(Routledge Companions) Alice Hall - The Routledge Companion To Literature and Disability-Routledge (2020) PDF

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THE ROUTLEDGE COMPANION TO

LITERATURE AND DISABILITY
The Routledge Companion to Literature and Disability brings together some of the most influen-
tial and important contemporary perspectives in this growing field. The book traces the history
of the field and locates literary disability studies in the wider context of activism and theory.
It introduces debates about definitions of disability and explores intersectional approaches in
which disability is understood in relation to gender, race, class, sexuality, nationality, and eth-
nicity. Divided broadly into sections according to literary genre, this is an important resource
for those interested in exploring and deepening their knowledge of the field of literature and
disability studies.
Alice Hall teaches in the Department of English and Related Literature at the University of
York, UK. She holds a PhD from the University of Cambridge and has previously worked at
the University of Nottingham and the University of Paris (III and VII). Alice is the author of
Disability and Modern Fiction: Faulkner, Morrison, Coetzee and the Nobel Prize for Literature (2012)
and Literature and Disability: Contemporary Critical Thought (2015).
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ROUTLEDGE COMPANIONS TO LITERATURE
Also available in this series:
The Routledge Companion to the Environmental Humanities

Edited by Ursula K. Heise, Jon Christensen and Michelle Niemann
The Routledge Companion to International Children’s Literature

Edited by John Stephens, with Celia Abicalil Belmiro, Alice Curry, Li Lifang and Yasmine S. Motawy
The Routledge Companion to Picturebooks

Edited by Bettina Kümmerling-Meibauer
The Routledge Companion to World Literature and World History

Edited by May Hawas
The Routledge Companion to Pakistani Anglophone Writing

Edited by Aroosa Kanwal and Saiyma Aslam
The Routledge Companion to Literature and Economics

Edited by Matt Seybold and Michelle Chihara
The Routledge Companion to Twenty-First Century Literary Fiction

Edited by Daniel O’Gorman and Robert Eaglestone
The Routledge Companion to Transnational American Studies

Edited by Nina Morgan, Alfred Hornung and Takayuki Tatsumi
The Routledge Companion to Victorian Literature

Edited by Dennis Denisoff and Talia Schaffer
The Routledge Companion to Health Humanities

Edited by Paul Crawford, Brian Brown and Andrea Charise
The Routledge Companion to Crime Fiction

Edited by Janice Allan, Jesper Gulddal, Stewart King and Andrew Pepper
The Routledge Companion to Literature and Trauma

Edited by Hanna Meretoja and Colin Davis
For more information on this series, please visit:

www.routledge.com/literature/series/RC4444
iii
THE ROUTLEDGE
COMPANION TO LITERATURE
AND DISABILITY
Edited by Alice Hall
iv
First published 2020
by Routledge
2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN
and by Routledge
52 Vanderbilt Avenue, New York, NY 10017
Routledge is an imprint of the Taylor & Francis Group, an informa business
© 2020 selection and editorial matter, Alice Hall; individual chapters,
the contributors
The right of Alice Hall to be identified as the author of the editorial material,
and of the authors for their individual chapters, has been asserted in accordance
with sections 77 and 78 of the Copyright, Designs and Patents Act 1988.
All rights reserved. No part of this book may be reprinted or reproduced or utilised
in any form or by any electronic, mechanical, or other means, now known or
hereafter invented, including photocopying and recording, or in any information
storage or retrieval system, without permission in writing from the publishers.
Trademark notice: Product or corporate names may be trademarks or registered trademarks,
and are used only for identification and explanation without intent to infringe.
British Library Cataloguing-in-Publication Data
A catalogue record for this book is available from the British Library
Library of Congress Cataloging-in-Publication Data
Names: Hall, Alice (Literature professor), editor.
Title: The Routledge companion to literature and disability/edited by Alice Hall.
Description: Abingdon, Oxon; New York, NY: Routledge, 2020. |
Includes bibliographical references and index.
Identifiers: LCCN 2019057593 | ISBN 9781138043602 (hardback) |
ISBN 9781315173047 (ebook)
Subjects: LCSH: Disabilities in literature.
Classification: LCC PN56.D553 R68 2020 |
DDC 809/.933561–dc23
LC record available at https://lccn.loc.gov/2019057593
ISBN: 978-1-138-04360-2  (hbk)
ISBN: 978-1-315-17304-7  (ebk)
Typeset in Bembo
by Newgen Publishing UK
v
CONTENTS
List of figures ix
List of contributors xi
Acknowledgements xvi
Introduction to The Routledge Companion to Literature and Disability 1

Alice Hall
PART I
New directions in the field 7
1 Disability in Indigenous literature 9

Siobhan Senier
2 Disability in black speculative fiction 21

Sami Schalk
3 t4t: toward a crip ethics of trans literary criticism 31

Cameron Awkward-Rich
4 Challenging phonocentrism: writing signs and bilingual Deaf literatures 43

Kristen Harmon
5 “Here there be monsters”: mapping novel representations of the

relationship between disability and monstrosity in recent graphic
narratives and comic books 57
Chris Foss
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Contents
6 Spectrality, strangeness, and stigmaphilia: Gothic and critical

disability studies 70
Sara Wasson
7 Contemporary horror and disability: adaptations and active readers 82

Petra Kuppers
PART II
Novels and short stories 95
8 From “changelings” to “libtards”: intellectual disability in the eighteenth

century and beyond 97
D. Christopher Gabbard
9 Crip gothic: affiliations of disability and queerness in Horace Walpole’s

The Castle of Otranto (1764) 109
Jason S. Farr
10 “Of wonderful use to everyone”: disability and the marriage plot in the

nineteenth-century novel 120
Clare Walker  Gore
11 Afro-modernism and black disability studies 132

Jess Waggoner
12 “What’s the matter with him?”: intellectual disability, Jewishness, and

stereotype in Bernard Malamud’s “Idiots First” 142
Howard Sklar
13 Metaphorical medicine: disability in Anglophone Indian fiction 156

Stephanie Yorke
14 Disability and contemporary literature: antinormative narratives

of embodiment 167
David T. Mitchell
PART III
Poetry 179
15 Poet and beggar: Edmund White’s Blindness 181

Vanessa Warne
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Contents
16 Deafness and modernism 193

Rebecca Sanchez
17 The “fury of loving joyfully”: Amelia Rosselli’s War Variations 203

Elizabeth Leake
18 Getting there: pain poetics and Canadian literature 212

Shane Neilson
19 Disability in contemporary poetry 224

Johanna Emeney
20 Disability poetry: testing the waters of definition 241

Michael Northen
PART IV
Drama 251
21 Canadian disability dramaturgies 253

Kirsty Johnston
22 Disability and the American stage musical 265

Samuel Yates
23 Of scapeghosts and men: Shane Meadows’ Dead Man’s Shoes and the

politics of learning disability 276
Anna Harpin
24 Disability, drama, and the problem of intersectional invisibility 290

Ann M. Fox
25 Puppets, players and the poetics of vulnerability: Hijinx’s Meet Fred and

new directions in the theatres of learning disability 303
Matt Hargrave
PART V
Life writing 315
26 Sex, death, and the welfare check: rhythms of disability and sexuality in

David Wojnarowicz’s Close to the Knives 317
Leon J. Hilton
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Contents
27 Disability narrative, embodied aesthetics and cross-media arts 327

Stella Bolaki
28 A grammar of touch: interdependencies of person, place, thing 343

Shannon Walters
29 Psychographics: graphic memoirs and psychiatric disability 353

Elizabeth J. Donaldson
30 Challenging the neurotypical: autism, contemporary literature, and

digital textualities 366
Hannah Tweed
Index 378
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ix
FIGURES
6.1 Deborah Padfield with Patrick Dixon from Deborah Padfield (2003) Perceptions
of Pain. Stockport: Dewi Lewis Publishing: p80. © Deborah Padfield,
reproduced by kind permission of Dewi Lewis. 77
6.2 Deborah Padfield with Nell Keddie from Deborah Padfield (2003) Perceptions
6.3 Deborah Padfield with Nell Keddie from Deborah Padfield (2003) Perceptions
12.1 Archetype of intellectual disability. 148
23.1 “Brotherly Doubles” in Dead Man’s Shoes, dir. Shane Meadows, Warp
Films (2004). 281
23.2 “Brotherly Doubles” in Dead Man’s Shoes, dir. Shane Meadows, Warp
Films (2004). 281
23.3 “Sonny” in Dead Man’s Shoes, dir. Shane Meadows, Warp Films (2004). 283
23.4 “Gypsy John” dead on the toilet in Dead Man’s Shoes, dir. Shane Meadows,
Warp Films (2004). 284
23.5 Murdered “Tuff ” stuffed in a suitcase in Dead Man’s Shoes, dir. Shane
Meadows, Warp Films (2004). 284
27.1 Alison Stewart, Fabricback Novel (2010). Image by Egidija Čiricaitė. 329
27.2 Deborah Humm, The Variance,Vagaries and Extreme Randomness of MS (2015).
Image by Egidija Čiricaitė. 332
27.3 HOAX My Lonely Heart. Writer: Ravi Thornton © 2014. Director
(theatre): Benji Reid. Director (film): John Grey. Stills credit: John Grey
© 2017. Actors: Christopher Tendai playing Rob, Danny Solomon playing
The Condition. Producer: Ziggy’s Wish Ltd. 336
27.4 HOAX Psychosis Blues. Page 39, First Edition. Page 35, Second Edition.
Author: Ravi Thornton © 2014. Illustrator: Karrie Fransman © 2014.
Chapter: A Desolate Spot. Publisher: Ziggy’s Wish Ltd. 338
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Figures
27.5 HOAX Our Right to Hope. Writer: Ravi Thornton © 2017. Co-writer:

Laura Harper. Illustrator: Andrew Chiu. Producer: Ziggy’s Wish Ltd. 339
29.1 Binky Brown, panel from page 2. Description: Binky walks down the sidewalk
past a car and says to himself, “At least nuthin’ bad happened to Mom!”
Meanwhile, in a thought bubble above his head, he imagines a car running
over his mother’s body and a loud “CRUNCH” sound. 355
29.2 Binky Brown, panel from page 7. Binky opens a door and sees a naked woman,
clutching at her breast, saying “Yurk Yokka Yokka Ig.” In the background a
nurse says, “Close that door, you!” 358
29.3 “Prisoner on the Hell Planet,” title panel. Description: a drawn hand holds a
photograph of Art Spiegelman as a child with his mother who is wearing a
bathing suit, captioned “Trojan Lake, N.Y., 1958.” Next to the photo, the
title text reads: “Prisoner on the Hell Planet: A Case History.” 359
29.4 Marbles, page 182. Description: Top of page reads, “From my diagnosis in
January 1998 until that point in March 2002, I had taken:” followed by
three sections illustrating Forney’s experiences with Klonopin, Lithium, and
Depakote. The next page, not included here, is a continuation that illustrates
Forney’s experiences with Celexa, Neurontin, and Zyprexa. 363
29.5 Rx, n.p. Description: Two sheep carrying briefcases walk into an office building
labeled Pfizer. A wolf wearing sheep’s clothing, also carrying a briefcase, follows.
At the top of the page, the title “Passing” appears in large letters. 364
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CONTRIBUTORS
Cameron Awkward-Rich is Assistant Professor in Women, Gender, Sexuality Studies at

the University of Massachusetts Amherst. His work can be found in Signs, American Quarterly,
Transgender Studies Quarterly and elsewhere. Also a poet, he is the author of two collections –
Dispatch (2019) and Sympathetic Little Monster (2016), which was a finalist for a Lambda
Literary award.
Stella Bolaki is Reader in American Literature and Medical Humanities in the School of
English at the University of Kent, UK. She is the author of Illness as Many Narratives: Arts,
Medicine and Culture (Edinburgh University Press, 2016). She has published widely in journals
such as Medical Humanities, Literature and Medicine, Journal of Literary & Cultural Disability Studies
and Mosaic. She is the director of Kent’s postgraduate programme in Medical Humanities.
Elizabeth J. Donaldson is Professor of English and Associate Dean at New York Institute
of Technology, where she teaches courses in American literature and directs the Medical
Humanities minor program. Her edited books include The Madwoman and the Blindman: Jane
Eyre, Discourse, Disability (2012) and Literatures of Madness: Disability Studies and Mental Health
(2018). She is currently at work on a monograph which focuses on collaborations and literary
exchanges among American writers and psychiatrists.
Johanna Emeney read English Literature and Oriental Studies at Cambridge. She went on to
teach senior school English literature in both England and her native New Zealand for twelve
years, and then gained her PhD at Massey University, Auckland, where she has worked as a
senior tutor in creative writing for nine years. Jo has published two collections of poetry (Apple
& Tree, Cape Catley, 2011, and Family History, Mākaro Press, 2017), as well as an academic book
called The Rise of Autobiographical Medical Poetry and the Medical Humanities (ibidem Press, 2018).
Jason S. Farr is Assistant Professor of English at Marquette University. His book, Novel
Bodies: Disability and Sexuality in Eighteenth-Century British Literature, was published by Bucknell
University Press in 2019. His research appears in venues such as Eighteenth-Century Fiction,
Journal for Early Modern Cultural Studies and The Eighteenth Century: Theory and Interpretation. His
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Contributors
public-facing writing on accessibility, disability and queer kinship can be found at The Chronicle
of Higher Education, Profession, The Rambling and elsewhere.
Chris Foss is Professor of English at the University of Mary Washington, where he specializes
in Nineteenth-Century British Literature, with a secondary emphasis on Disability Studies.
He served as the lead editor for Disability in Comic Books and Graphic Narratives, published by
Palgrave’s Literary Disability series in 2016, and is currently working on a new book pro-
ject tentatively entitled The Importance of Being Different: Intersectional Disability and Emotional
Response in Oscar Wilde’s Fairy Tales.
Ann M. Fox is Professor of English at Davidson College, where she specializes in modern and
contemporary drama, literary and cultural disability studies, and graphic medicine. A recipient
of multiple fellowships, her scholarship on disability and theater has been published widely; she
has also co-curated four disability-related visual arts exhibitions. Her current project is entitled
Adaptive Activism: How Disability Refigures the Cultural Landscape.
D. Christopher Gabbard is Professor of English at the University of North Florida, where

he teaches courses in British Enlightenment literature, critical disability studies, and creative
nonfiction. He is the author of A Life Beyond Reason: A Father’s Memoir (Beacon, 2019) and the
co-editor of A Cultural History of Disability in the Long Eighteenth Century (Bloomsbury, 2019).
He is editing a collection of critical essays focusing on representations of caregiving in literature
and popular media.
Clare Walker Gore read English at Selwyn College, Cambridge, where she wrote her PhD
thesis on disability in Victorian fiction. She currently holds a Junior Research Fellowship at
Trinity College, Cambridge, and her first book, Plotting Disability in the Nineteenth-Century
Novel, published in 2019 with Edinburgh University Press. She is currently pursuing a project
on life writing by and about female novelists in the nineteenth century.
Matt Hargrave is Senior Lecturer in Drama at Northumbria University, Newcastle Upon

Tyne. His overarching research interest is human vulnerability: how acts of performance
redefine the terms of engagement with vulnerability and establish new generative modes of
understanding. He is the author of Theatres of Learning Disability: Good, Bad or Plain Ugly?
(Palgrave, 2015) and is currently working on a project about the role of stand-up comedy
in mental health education.
Kristen Harmon is Professor of English at Gallaudet University, a bilingual ASL-English uni-

versity, in Washington, D.C. Born deaf and mainstreamed, Kristen immersed herself in the Deaf
community and learned American Sign Language (ASL) as a young adult. She has published
essays, short stories, and non-fiction, and she is co-editor of a series of books on Deaf American
prose, published at Gallaudet University Press.
Anna Harpin is Associate Professor of Theatre and Performance Studies at the University
of Warwick. Her research examines the cultural histories of madness and trauma. Her recent
publications include Madness, Art, and Society: Beyond Illness (Routledge, 2018) and ‘Broadmoor
Performed: A Theatrical Hospital’ in The Edinburgh Companion to the Critical Medical Humanities
(Edinburgh University Press, 2018). Alongside her academic work she works as a theatre writer
and director with her company, Idiot Child.
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Contributors
Leon J. Hilton is Assistant Professor of Theatre and Performance Studies at Brown University.
His work focuses on modern and contemporary theatre and performance, with particular
attention to the way these fields overlap with disability studies and neurodiversity, queer theory,
critical race studies and psychoanalysis. His research has been published in GLQ, Third Text,
African American Review, The Journal of Literary and Cultural Disability Studies and TDR/The
Drama Review.
Kirsty Johnston, Associate Professor in the University of British Columbia Department of

Theatre and Film, researches intersections between disability, theatre and performance. Her
books include Stage Turns: Canadian Disability Theatre (McGill- Queen’s University Press,
2012) and Recasting Modernism: Disability Theatre and Modern Drama (Bloomsbury, 2016). The
latter includes a critical section featuring the work of disability performance scholars/activists
Michael Davidson, Ann M. Fox, Terry Galloway, M. Shane Grant, Ben Gunter, Carrie Sandahl
and Jenny Sealey.
Petra Kuppers is a disability culture activist, a community performance artist, and a professor
at the University of Michigan. She leads The Olimpias, an international performance research
collective. Her most recent monograph, Theatre & Disability (2017), offers a snapshot of the field.
Her previous monographs engaged disability performance, medicine and contemporary arts,
and community performance. She is the author of a dark fantasy collection, Ice Bar (2018). Her
most recent poetry collection is the ecosomatic Gut Botany (2020).
Elizabeth Leake is Professor of Italian at Columbia University, where she teaches courses on
twentieth-century narrative, theatre and cinema. Her books include The Reinvention of Ignazio
Silone (2003), After Words: Suicide and Authorship in Twentieth-Century Italy (University of Toronto
Press, 2011) and Tex Willer: Un cowboy nell’Italia del dopoguerra (Il Mulino, 2018). With Piero
Garofalo and Dana Renga, she co-authored Internal Exile in Fascist Italy (Manchester University
Press, 2019).
David T. Mitchell is Professor of English at George Washington University, where he teaches

Disability Studies, Cultural Theory, and American Literature. With Sharon L. Snyder, he has
written and edited a number of books including The Body and Physical Difference: Discourses
of Disability (1997), Narrative Prosthesis: Disability and the Dependencies of Discourse (2000), The
Encyclopedia of Disability (vol. 5): A History of Disability in Primary Sources (2005) and Cultural
Locations of Disability (2006). His most recent book, The Biopolitics of Disability: Neoliberalism,
Ablenationalism, and Peripheral Embodiment (2015), analyzes crip/queer subcultures as social
spaces of differentiation for the construction of nonnormative identities.
Shane Neilson is a disabled physician and New Brunswicker who edits for Frog Hollow
Press and Gordon Hill Press. From 2010–2017, Shane published his Affect Trilogy with the
Porcupine’s Quill; Complete Physical, the first volume, was shortlisted for the Trillium Poetry
Prize, and Dysphoria, the third volume, won the Hamilton Arts Council Poetry Award. He is
the winner of SSHRC’s $50,000 “Talent Award” in 2018; in 2019, he won the Gold Medal
from McMaster University for his research in the field of disability studies. Finally, he is Poetry
Advisor for the CMAJ and takes great delight in soliciting disabled poets for publication.
Michael Northen edits Wordgathering, A Journal of Disability and Poetry and is co-editor of the
anthology Beauty Is a Verb: The New Poetry of Disability and the disability short fiction anthology,
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Contributors
The Right Way to Be Crippled and Naked. He is a founding member of the Disability Literature
Consortium. An educator for more than forty years, Northen has taught adults with physical
disabilities, women on public assistance, prisoners and rural and inner city children.
Rebecca Sanchez is Associate Professor of English and co-director of the Disability Studies
Program at Fordham University. Her first book, Deafening Modernism: Embodied Language and
Visual Poetics in American Literature, was published in 2015 with New York University Press
and in 2016 she co-edited the republication of Pauline Leader’s memoir And No Birds Sing
(Gallaudet University Press). She was a recipient of a 2015–2016 AAUW American fellowship,
and her work on disability, modernism and poetics has appeared in numerous journals and
edited collections.
Sami Schalk is Associate Professor of Gender & Women’s Studies at the University of
Wisconsin-Madison. Her research focuses on disability, race and gender in contemporary
American literature and culture. She is the author of Bodyminds Reimagined: (Dis)ability, Race &
Gender in Black Women’s Speculative Fiction (Duke University Press, 2018).
Siobhan Senier is Professor of English and Chair of Women’s and Gender Studies at the
University of New Hampshire. She is the editor of Dawnland Voices: An Anthology of Indigenous
Writing from New England (2014) and author of Sovereignty and Sustainability: Indigenous Literary
Stewardship in New England (2020). With Clare Barker, she edited the 2013 special issue of the
Journal of Literary and Cultural Disability Studies on “Disability and Indigenous Studies”.
Howard Sklar is Senior Lecturer in the Department of Languages at the University of Helsinki.
He is the author of The Art of Sympathy in Fiction: Forms of Ethical and Emotional Persuasion (John
Benjamins, 2013), as well as articles on the representation of intellectual disability in fiction in
Disability Research Today: International Perspectives (Routledge, 2015), and the Journal of Literary &
Cultural Disability Studies (2011), among other publications.
Hannah Tweed is a senior policy officer and researcher in the third sector. She supports work
to drive public service reform so that disabled people, people living with long-term conditions
and unpaid carers enjoy a high quality of life, underpinned by rights to independent living,
choice and control. Prior to her current role Hannah worked at the universities of York, Stirling,
Edinburgh and Glasgow. She obtained her PhD from the University of Glasgow in 2015.
Jess Waggoner is Postdoctoral Fellow in WGSS at the University of Houston, and will be
Assistant Professor at the University of Wisconsin-Madison, beginning Fall 2020. Waggoner’s
research draws together literary and cultural studies, feminist disability studies, queer/trans
theory, and critical race studies. Their work has appeared in the Journal of Modern Literature,
Journal of Literary and Cultural Disability Studies, Modernism/Modernity, Modern Fiction Studies and
Journal of Feminist Scholarship.
Shannon Walters is Associate Professor of English at Temple University, where she researches
and teaches in rhetoric and composition, disability studies and gender studies. She is the author
of Rhetorical Touch: Disability, Identification, Haptics (University of South Carolina Press, 2014).
Her work has appeared recently in PMLA, Research in the Teaching of English, Composition Forum
and the Journal of Literary & Cultural Disability Studies.
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Contributors
Vanessa Warne teaches and researches the nineteenth-century history of disability at the
University of Manitoba in Canada.
Sara Wasson is Lecturer in Gothic Studies at Lancaster University, and her research specialties
are critical medical humanities, science fiction and twentieth-and twenty-first-century Gothic.
Her books include the monograph Urban Gothic of the Second World War (Palgrave, 2010), Gothic
Science Fiction, 1980–2010 (Liverpool University Press, 2011), co-edited with Emily Alder, and
the monograph Transplantation Gothic (2020), forthcoming from Manchester University Press.
She leads the AHRC-funded research network “Translating Chronic Pain”.
Samuel Yates is Professorial Lecturer at George Washington University. His current book pro-
ject, Cripping Broadway, examines disability aesthetics and contemporary musical theater. Samuel
has received ASTR’s Helen Krich-Chinoy Dissertation Fellowship to support his research on
the relationship between triple-threat performers and disabled embodiment. Recent scholar-
ship can be found in Studies in Musical Theatre, The Matter of Disability (Michigan University
Press, 2019), and A Cultural History of Disability in the Modern Age (Bloomsbury, 2019).
Stephanie Yorke reads and writes. She lives in Montreal.
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newgenprepdf
ACKNOWLEDGEMENTS
My first thanks are to all of the contributors and to Mohammad Barangi for very generously
allowing us to use his artwork on the cover of this book. I am also extremely grateful to Polly
Dodson and Zoe Meyer at Routledge for all of their work in editing the book, and to Dr Marie
Allitt for her rigorous proofreading and comments.
Finally, I would like to thank Chris, Pete and Tom Hall and Josh, Lucy and George Freeman
for all of their help and wonderful support over the time it has taken to put this book together.
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1
INTRODUCTION TO THE
ROUTLEDGE COMPANION
TO LITERATURE AND
DISABILITY
Alice Hall
Making spaces
In his essay, “Crip Poetry, or How I Learned to Love My Limp,” Jim Ferris argues that:
Crip poetry carries in it the potential for…[a]‌radical transformation…[it has] the

potential to transform the world, to make the world in which we live roomier, not
only more transparent and known, but to make more space in the imagination, and
so in the culture, for the wide and startling variety of rich and fulfilling ways that real
people live and love, work and play in this world.
Ferris articulates his sense of the transformative potential of Crip poetry through spatial
metaphors: he wants to make the world “roomier” and create “more space” in the imagination.
As a poet and a critic, he is interested in the fine detail of writing and how it occupies physical
space, “marks that make a shape on the page,” but also the ways in which disability perspectives
can open up an expansive “cosmos of possible ontologies.” For Ferris, “to crip” is an active
imaginative and critical position.
Like Ferris’s essay, this collection sets out to make more room for disability perspectives and
to explore some of the spaces and places that they occupy in literature, culture and contem-
porary criticism. One of the pleasures of putting together a Routledge Companion is the unusual
scale and scope of it: the space it allows for the inclusion of analysis from a range of critical
perspectives, time periods and genres, by established and emerging voices in the field. The
collection as a whole is inspired by calls from Ferris and others to demonstrate the radically
transformative power that disability perspectives can have on the ways in which we think about
bodies, minds, practices of reading and forms of writing. This sense of possibility is frequently
articulated by students and scholars in the field. Michael Davidson describes the “edgy poten-
tial, the openness and even likelihood of transformation” in disability writing, and poetry in
particular (18). Tobin Siebers argues that although it is “sometimes seen from the outside as a
peripheral –as yet another sub-genre in a growing list of identity studies,” “disability theory in
fact has the potential to transform critical and cultural theory all over again” (3).
1
2
Alice Hall
In order to do this, critical disability perspectives must be given a place on curricula and
disabled writers, scholars and students need to be able to access to the physical spaces of schools,
universities, arts institutions and libraries. Simi Linton, in an autobiographical account of her life
as a writer and disability activist, highlights the importance of occupying spaces both in a physical
and a political sense; making oneself visible is, for Linton, a form of resistance: “We have come out,
not in those brown wool lap robes over our withered legs, or dark glasses over our pale eyes, but in
shorts and sandals…straightforward, unmasked, and unapologetic” (6). Laurie Clements Lambeth
develops these political and practical questions of access into a central metaphor in her poetry. For
Lambeth, poetry is a means of accessing imaginative spaces that would otherwise be closed off:
What is inaccessible to most readers offers me access to the world of words, to my

world, where poetic lines serve as a form of automatic doors, or elevators, or access-
ible parking spaces, ramps, lowered countertops. It invites me to experience it without
discomfort.
All of the works cited so far in this introduction share a striking sense of disability as an active
critical position, one from which a disabled subject might “act” or “theorize,” rather than
function merely as a passive object of research (Davis xvii). As Jina B. Kim puts it, this process is
about “shifting disability from noun –an identity one can occupy –to verb: a critical method-
ology.” In spatial terms, it is about opening up existing spaces but also imagining “a world newly
accessible because of alternative structures” (Chivers 884).
This collection takes up some of these challenges by engaging in fresh ways with key
cultural examples of disability representations from different periods and places, but also by
exploring disability as a critical methodology. This means, in some cases, exploring examples
where the text does not explicitly name a particular impairment or condition, but where dis-
ability structures the logic of the narrative or ways of seeing and knowing in the text. Rebecca
Sanchez’s chapter in this collection, for example, argues that:
One of the most exciting recent developments in literary disability studies has been
the movement to consider how non-normative embodiment, intellectual and psychi-
atric ways of being can operate not only as objects of study but as methodologies, as
epistemologies that shape our encounters with cultural texts regardless of the presence
of a clear and obvious link to disability. The idea of disability’s broad relevance to the
ways we engage with literature is not itself new. (193)
Her chapter explores “critical deafness” as an intersectional methodology and uses it to think
about examples of American Modernist poetry. Another chapter in the collection, Kirsty
Johnston’s piece on Canadian drama, engages with the Realwheels theatre production company
which aims “to create and produce performances that deepen the audiences’ understanding of
the disability experience. […] We tell stories in which disability itself is not the focus of conflict,
but rather forms the landscape upon which universal issues are debated onstage.” (257) In this
context, disability provides the essential backdrop for broader debates about rights and identities
that are enacted publicly.
Critical intersections and entanglements: the structure of the book

This collection seeks to showcase the diversity of contemporary critical writing about dis-
ability and to provide space for thinking through what the future of the field might be. This
2
3
Introduction
is reflected in the diverse forms of disability that are represented in the literary texts that have
been chosen, from D/deaf experience (in chapters by Sanchez and Kristen Harmon) to degen-
erative physical conditions (such as in Johanna Emeney’s chapter on contemporary poetry). In
some senses, the collection seeks to address areas that have been traditionally under-researched
in disability studies: for example, Jess Waggoner’s chapter on Afro-modernism highlights “the
whiteness of literary disability studies” and the contributions on intellectual and learning dis-
abilities from Matt Hargrave and Howard Sklar both challenge the tendency for scholarship to
focus on physical forms of disability. The collection also aims to demonstrate the depth and
richness of writing about disability through analysis of a spread of texts from different genres
and time periods, ranging from Chris Gabbard’s exploration of the origins of the novel, which
includes amongst others Jonathan Swift’s Gulliver’s Travels (1726/35), to David Mitchell and
Susan Snyder’s analysis of “the advent of alternative neoliberal narrative spaces” in contem-
porary fiction. The emphasis in the vast majority of the chapters is on Anglophone writing, as
is often the case in literary disability studies, but the collection does seek to show the global
nature of this “English” writing about disability, for example in Stephanie Yorke’s chapter on
Indian fiction and its postcolonial contexts. Also included are chapters on literatures not in
English, such as Elizabeth Leake’s contribution on Italian poet Amelia Rosselli. Contributors to
the collection are drawn from all over the world.
The book is divided into sections according to genre. This focus on genre is, in itself, an
attempt to address another area that is often overlooked in disability studies. The emphases on
representation in general, or on particular types of disability such as the “autism narrative,” can
sometimes flatten genre differences between quite different literary forms and divert attention
away from the ways in which individual texts adhere to, disrupt or play with the conventions
of their particular genre. Recognising the sophistication and complexity of how genre works
in many of these texts is, I argue, part of recognising the literary value of much writing about
disability and by people with disabilities. Alongside studies of race, gender and sexuality, dis-
ability studies can contribute to scholarship on so-called “minority identities,” but it is also key
to understanding the history of genres and the ways in which certain practices of reading and
writing have developed across time.
This collection gives roughly equal space to works from several different genres: novels and
short stories; poetry; drama; life writing. In this sense, it seeks to challenge the traditional hier-
archy of genres in which novels have been the primary focus of analysis for literary disability
studies critics. The structure of the book also gives parity to forms that might have received less
attention because of their popular appeal (such as the comics and graphic memoirs discussed
in chapters by Chris Foss and Elizabeth Donaldson) or because their novelty means that their
cultural value has not been endorsed by the literary establishment (such as the self-published
novella on Trans experience discussed in Cameron Awkward-Rich’s chapter or Hannah Tweed’s
analysis of “unmediated digital writing” in online forums about autism).
The structure of book is not, therefore, intended to draw strict lines between genres. In fact,
many of the chapters in this collection that address questions of genre directly are concerned
with the great potential of generic hybridity. For Chris Foss, the rich hybridity of the comic
genre is integral to its ongoing concern with representations of monstrosity. Leon Hilton’s
chapter looks at experimental life writing as a mode of existential protest: “Close to the Knives,”
he argues, “chafes against the genre conventions and expectations that have come to define the
memoir as a literary form” (317). Stella Bolaki’s chapter highlights how this hybridity can create
rich new forms and ways of thinking about autobiography: she is interesting in “mixed or cross-
media genres. These include artists’ books, textile art, comics and digital storytelling that also
blur the boundaries of art, activism and autobiography” (327). In many ways, Petra Kuppers’s
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Alice Hall
chapter in the opening section, which reflects upon “the recombitant pleasures of genre –what
working in a genre framework can mean, can add, and can subvert –stepping outside the box
and examining what is in it,” sets the tone for the collection as a whole (82).
The first section of this Routledge Companion provides space for the discussion of established
genres alongside emerging new forms. It sets up a series of conversations about the future of the
field that extend throughout the book. The opening section places literary critical perspectives
on Indigenous, Trans, Black and Deaf writing side by side. In doing so, it seeks to establish the
rich potential for conversations between literatures that explore different protest movements
and identities, but also to retain a model of “adjacent fields” (Siebers 1), rather than mapping one
directly onto another. Ann Fox’s chapter, in which she cites Eli Clare, provides a self-conscious
discussion of the possibilities and pitfalls of the intersectional model of identity favoured by
many contemporary disability studies critics: “[t]‌he layers are so tangled: gender folds into
disability, disability wraps around class, class strains against race, race snarls into sexuality, sexu-
ality hangs onto gender, all of it finally piling into our bodies” (Clare). In the opening section,
conversations about monstrosity and the Gothic connect chapters by Foss, Sara Wasson and
Petra Kuppers. While these chapters engage with the contemporary period, they also set up
questions that are addressed later on in the collection in relation to one of the earliest Gothic
novels, Horace Walpole’s The Castle of Otranto (1764).
This Routledge Companion to Literature and Disability therefore aims to give readers a sense of
the rich history of literary disability studies but also to engage them in current critical debates.
Sami Schalk’s description of her chapter, as not an “exhaustive catalog of representations,” but
rather a set of “tools to interpret these texts that remain simultaneously attentive to issues of
disability, race, and genre,” is a relevant and productive model for the approach adopted in the
collection as a whole (22). Through its various contributions, the book asks how disability
works as a cultural representation, a metaphor, a social relation, an epistemology and a method-
ology. Underpinning this are debates about the ethical value of literature and what we are doing
when we “do” disability criticism as active and engaged critics. Above all, this collection argues
that these debates are relevant and important to all of us.
The chapters that follow share a sense that literary and theoretical writing about disability
provides a fresh critical category, access to new forms of knowledge and a means of examining
the narratives through which we give shape and meaning to our lives. As Jim Ferris suggests in
a striking moment of direct address to readers:
This is a story about you, about your body in the world around you, about the edges
to these sacks of flesh, these bags of blood and bone, of meat and gristle, of lymph and
lyricism we all walk around in. Or don’t walk around in. (“Just Try”)
Works cited
Chivers, Sally. “Survival of the Fittest: CanLit and Disability.” Oxford Handbook to Canadian Literature,
edited by Cynthia Sugars. New York: Oxford University Press, 2016. www.oxfordhandbooks.com/
view/10.1093/oxfordhb/9780199941865.001.0001/oxfordhb-9780199941865-e-48, accessed 2
November 2019.
Clare, Eli. “Excerpt from: Digging Deep: Thinking about Privilege.” Eliclare.com, 2003. www.eliclare.com/
what-elioffers/lectures/privilege, accessed 4 November 2019.
Davidson, Michael. Concerto for the Left Hand. Ann Arbor: University of Michigan Press, 2008.
Davis, Lennard J. Bending Over Backwards: Disability, Dismodernism and Other Difficult Positions.
New York: New York University Press, 2002.
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Introduction
Ferris, Jim. “Crip Poetry, or How I Learned to Love My Limp”. Wordgathering. www.wordgathering.com/
past_issues/issue2/essay/ferris.html, accessed 2 November 2019.
———. “Just Try Having None.” Text and Performance Quarterly, vol.28, no.1, 2008. 10.1080/
10462930701754499, accessed 2 November 2019.
Kim, Jina B. “Towards a Crip-of-Color Critique: Thinking with Minich’s ‘Enabling Whom?’” Lateral,
vol.6, no.1, 2017. https://csalateral.org/issue/6-1/forum-alt-humanities-critical-disability-studies-
crip-of-color-critique-kim/, accessed 2 November 2019.
Lambeth, Laurie Clements. “Gaining Access.” MS Connection. 22 September 2014. www.msconnection.
org/Blog/September-2014/Gaining-Access, accessed 2 November 2019.
Linton, Simi. My Body Politic: A Memoir. Ann Arbor: University of Michigan Press, 2006.
Realwheels. Realwheels.ca. http://realwheels.ca./, accessed 2 November 2019.
Siebers, Tobin. Disability Theory. Ann Arbor: University of Michigan Press, 2008.
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PART I
New directions in the field

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1
DISABILITY IN INDIGENOUS
LITERATURE
Siobhan Senier
Bringing Native American and Indigenous Studies (NAIS) keywords to bear on the literary
study of disability, this chapter argues that Indigenous disability cannot be thought apart from
tribal sovereignty and land claims.1 Dialogue between NAIS and Disability Studies (DS) has
been somewhat reluctant or halting. Perhaps this is just part and parcel of the continued margin-
alization of both topics –of the fact that so many academic disciplines are still too white and/
or too ableist. NAIS’s reluctance to embrace Disability Studies might be understood in the con-
text of social-science approaches to the field: Indigenous people, after all, have been routinely
pathologized, subject to removal, cure, and “rehabilitation.” Disability Studies, for its part, might
conceivably be puzzled by a paucity of Native American literature foregrounding disability as a
category of identity or analysis, and by the seeming absence of what we might call Indigenous
disability cultures –legibly Indigenous and disabled performance arts, poetry, visual arts, and/
or social movements.
Just a few short years ago, Cherokee scholar Sean Kicummah Teuton also tried to stimulate
a dialogue between our two fields. He and other scholars working at the junction of these dis-
ciplines have made two major claims: (a) that Indigenous disability is produced by colonialism,
materially and discursively; and (b) that tribal communities have not necessarily Othered dis-
ability, historically or traditionally. I will review these arguments in greater depth in this chapter,
but want to note here that Teuton began his foundational essay with a compelling vignette: in
1990, disabled Lakota activists staged a sit-in at Pine Ridge tribal headquarters. They called
themselves “the Quad Squad,” and they were demanding the building be made accessible.Tribal
governments, as sovereign entities, are in fact exempt from Title 1 of the ADA; but poverty is
arguably the greatest obstacle to their efforts to improve accessibility in tribal built environ-
ments. Compounding the problem, Teuton adds, Native American tribes experience dispropor-
tionately high rates of disability, with an estimated one in four people experiencing some form
of impairment.
So the Quad Squad protest can hardly be an anomaly. Surely disability protests and activism
do happen on reservations and in rural tribal communities; and surely Indigenous people do par-
ticipate in more urban, mixed disability collectives and communities. This kind of activism and
disability expression, however, is not immediately apparent in literature written by Indigenous
people. It is not that characters with disabilities don’t exist. On the contrary, physically and
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Siobhan Senier
psychically wounded veterans appeared in many of the major novels of the Native American
Renaissance (1960s– 80s) by N. Scott Momaday (Kiowa), Leslie Marmon Silko (Laguna
Pueblo), and Louise Erdrich (Ojibwe). Characters living with addiction, amputations, and AIDS
appear in more recent fiction by Sherman Alexie (Spokane/Coeur d’Alene), Joseph Bruchac
(Abenaki), Patricia Grace (Māori), and Tomson Highway (Cree). Disability has also been the
subject of some Indigenous memoirs –most famously in The Broken Cord (1998), where
Michael Dorris (Modoc) writes about his son’s Fetal Alcohol Syndrome; and in Basil Johnston’s
(Ojibwe) Crazy Dave (1999), about his great-uncle who had Down’s Syndrome. Additionally, a
small but growing number of scholars have begun to examine disability in these texts, including
Clare Barker, Keely Byars-Nichols, G. Thomas Couser, Mary J. Couzelis, and Michelle Jarman.
But these are representations of disability by Indigenous authors who are not themselves
disabled, or who at least have not publicly identified as such. In what follows, I try to offer a
glimpse of an Indigenous disability literature canon –works authored by Indigenous people
who openly claim disability identities (or have had those thrust upon them) and who make dis-
ability a subject of their work. I argue that insofar as we might identify an Indigenous disability
aesthetic or poetics, we should see it as deeply rooted in tribal nationhood and land relations. My
discussion is grounded in terms elaborated in the important collection Native Studies Keywords
(2015), edited by Stephanie Nohelani Teves, Andrea Smith, and Michelle Raheja. These are
concepts that have long-standing importance in NAIS, and that continue to be refined and
contested by Indigenous scholars. They can help shed light on Indigenous disability literature,
and in turn be enriched by concepts from within Disability Studies.
Sovereignty and nation
At some level, every Indigenous text is arguably about sovereignty. When NAIS scholars
speak of sovereignty, they are invoking Indigenous peoples’ unique political and legal status.
In the United States, Native Americans are not “ethnic minorities” in the same way as African
Americans, Asian Americans, and other “hyphenated” groups, because they have specific ter-
ritorial claims and rights to self-government, many of which are enshrined and recognized in
federal and international law.Teves, Smith, and Raheja succinctly trace the development of sov-
ereignty as a critical concept in NAIS as an academic discipline, observing that while on the one
hand, it has prompted scholars to seek “to defend indigenous nationhood” first and foremost,
on the other hand it has also been limited or problematic, insofar as it depends on “recognition”
from the colonial state.
Thus, many Indigenous intellectuals now define sovereignty much more capaciously,
speaking, for example, of intellectual sovereignty, visual sovereignty, and rhetorical sover-
eignty –in short, of the rights of Indigenous people to have first voice and control over their
representations. One contributor to Native Studies Keywords, Leanne Betasamosake Simpson
(Mississauga Nishnaabeg), argues that sovereignty can be conceptualized and exercised out-
side of the framework of modern nation-states, as “authentic power coming from a generated
consensus and a respect for dissent rather than…from authoritarian power or power-over style
of governance” (19). Simpson and like-minded colleagues have led NAIS to be much more
concerned with liberation and intersectionality –“envisioning,” as Teves and colleagues put it,
“what sovereignty would look like if it were based on principles of justice for all peoples and
care for all of creation” (15).
We might say that Deaf Indian writers express intellectual sovereignty, for example, when
they argue for the primacy of American Indian Sign Language (AISL) over American Sign
Language (ASL), either as something that preceded the creation of ASL or as something more
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Disability in Indigenous literature
culturally appropriate and meaningful for them. Howard Busy (Mississippi Choctaw/Eastern
Cherokee) relates a story of Apache leaders traveling to Washington, D.C., for diplomatic nego-
tiations in 1872; when they came upon students from Gallaudet, he says, “soon the two groups
were signing to each other in combinations of American Sign Language and Indian signs” (42).
Historian Brenda Farnell suggests that “the situation was complex, to say the least”; that “what
mutual understanding was achieved was probably the result of explicit miming combined with
trial and error, rather than the use of either sign language. Both groups were already very skilled
in using the medium and no doubt rose to the occasion with creativity” (43). Farnell’s point is
that not all gestural languages (even all Indigenous gestural languages) are the same, or mutually
intelligible dialects; but it is also worth noting that what motivates Indigenous people to elevate
AISL over ASL is not necessarily a rejection of Deaf culture and identity. In cases where AISL is
still practiced by tribal members, some Indigenous activists find that it “is much easier and faster
to learn [than ASL, and] is more functional and might be appropriate in a rural or an isolated
family situation” (Lovern and Locust 103). Moreover, they may assert that “hand sign systems
specifically tie themselves to Earth” (Lovern and Locust 23). This insistence on tribally specific,
grounded disability practices can be seen as another way of asserting sovereignty.
In the collection Step into the Circle (2002), Busy and other Deaf Indians describe a disability
experience in which the desire for re-connection with tribal lands and tribal community is
paramount. Recounting the founding of the Intertribal Deaf Council in 1993, Walter P. Kelley
(Northern Cheyenne) recalls that organizers believed it critical to host the first conference on
Native land, so they chose Oklahoma City, mindful of that state’s history as an Indian territory.
Conference topics centered on Native heritage, language, and culture more than on Deaf issues
because so many participants “had to leave their native homes due to the lack of nearby educa-
tional and vocational services for deaf and hard of hearing people. They also indicated that they
had lost their Native American roots due to leaving home at an early age and growing up in the
‘Deaf World’ ” (Paris et al. 7). These writers do not discount the idea of Deaf Gain; but they do
suggest that it is perhaps more complex for Indigenous people to negotiate. While attendance
at a school like Gallaudet and the embrace of a distinct Deaf culture has been central to much
Deaf culture and pride, Indigenous people also bring with them long histories of removal from
their home communities precisely for purposes of education –education meant to assimilate
and exterminate them.
Thus, it might be just as important for Indigenous people to assert the Indianness of sign lan-
guage as it is to embrace sign language as a disability cultural practice. The editors of Step into
the Circle characterize AISL as “broader in meaning than ASL…made against the background
of the sky (toward nature), whereas ASL makes signs closer to the body. AISL can be read at a
much greater distance than ASL” (Paris et al. 37).This is not a claim that AISL is superior (many
Deaf Indians use both), only that it is distinct, and can be held up as a marker of sovereignty. Step
into the Circle does resonate with many Disability Studies tenets, including a resounding rejec-
tion of the notion of victimhood or cure: “in Indian Sign Language, we have no words for help
or rehabilitation. We can sign WORK-TOGETHER. Deaf Natives want partners, not saviors.
That’s the Traditional way –equality in the circle” (Paris et al. 39). AISL is now considered an
endangered language like other Indigenous languages; and, as Jeffrey Davis illustrates, it is now
the subject of language revitalization efforts, like those other languages.
Language revitalization is a critical practice in tribal nation (re)building; and tribal nation-
hood –“a term freighted with authority and…reflecting the political structure and organiza-
tional principles of Native social and cultural experience” (Teves et al. 157) –underwrites even
Indigenous texts that do not seem overtly political. Sherman Alexie, for instance, has never
made a secret of his childhood hydrocephaly, nor his alcoholism, but in his recent memoir, You
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Siobhan Senier
Don’t Have to Say You Love Me (2017), he “came out” as disabled: “I was officially diagnosed as
bipolar in 2010, but I think my first symptoms appeared when I was a child” (7). Alexie recounts
a childhood wracked by surgeries and stints to drain the fluid from his head; seizures and
medication (“I was a kindergartner on phenobarbital,” 7); nightmares and hallucinations; and
family violence. Personal though this story may be, Alexie returns again and again to a major
abrogation of tribal sovereignty that haunts his family and lurks behind illnesses and disabil-
ities: in the 1930s, the U.S. government built the Grand Coulee Dam on the Columbia River
in Washington State, territory traditionally inhabited by the Spokane and other tribes. The dam
destroyed salmon spawning grounds, in turn decimating not only a major source of sustenance
for the tribes but also their important burial and ceremonial sites. The loss of salmon has far-
reaching effects, contributing, as Alexie sees it, to his family’s vulnerability and illnesses, which
he calls “salmon-g rief ” (139).
My mother and father were members of the first generation of Interior Salish people
who lived entirely without wild salmon.
My mother and father, without wild salmon, were spiritual orphans.
My father was also orphaned by war and contagious disease.
My siblings and I were conceived, birthed, and nurtured by orphans –by the salmonless
and parentless and non-immune. (138–39)
Alexie’s mother, whom he believes to have been “an undiagnosed bipolar grandiose fabulist,”
tells him a story about once walking across the pre-dammed river on the backs of salmon. Alexie
thinks she’s lying, but he also thinks “it’s a lie in service of scientific and spiritual truth” –that
“the Grand Coulee Dam is an epic gravestone,” the site where his nation’s history and future
were “murdered” by a colonial government (133). In Alexie’s case, then, disability is not only
a product of colonialism, but the standpoint from which colonialism may be best understood.
Land
Indigenous sovereignty and nation are, therefore, inextricable from Indigenous land. Here again,
Indigenous people differ from other cultural minorities in their long-standing claims to par-
ticular geographic territories –claims enshrined in international law. The UN Declaration on
the Rights of Indigenous Peoples (UNDRIP), Article 25, asserts that “Indigenous peoples have
the right to maintain and strengthen their distinctive spiritual relationship with their tradition-
ally owned or otherwise occupied and used lands, territories, waters, and coastal seas and other
resources and to uphold their responsibilities to future generations in this regard” (United
Nations). Teves and her colleagues note that what is critical in this formulation of land claims is
not the “temporal framework of prior occupancy,” but rather the “spatial framework of radical
relationality to land” (67).
This radical relationality resonates with themes in Disability Studies, and also in Ecocriticism.
In this sense, Native American and Indigenous Studies and Disability Studies seem to be
heading toward some mutually informative kinds of inquiry, as each is dedicated to thinking
through notions of interdependence and reciprocity –both to analyze the ways that bodies
cannot be understood apart from their environments, and to imagine the ways that we might
make bodies more mutually interdependent with other bodies and with more progressively
constructed environments. Recent work on disability in the Global South, for instance, has
trained attention on how colonialism, poverty, and racism help produce disability, materially and
discursively. Scholars including Nirmala Erevelles, Shaun Grech, Helen Meekosha, and Karen
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Soldatic have shown that, on the most obvious level, cutting off access to traditional foods and
polluting waterways produces bodily impairment for Indigenous and poor people. As Grech
puts it, “the privatization of property, the introduction of an economic value on food, and the
exploitation of land beyond sustainable use meant environmental and land degradation, reduced
food availability and shifted age-old sustainable cultivation patterns, often leading to starvation
and consequently disease and impairment” (12).
Jen Meunier, an Autistic Algonquin Anishinabe writer and activist, uses her poetry to explore
this radical relationality to the land. In her contribution to the monumental new collection All
the Weight of Our Dreams: On Living Racialized Autism (2017), she inserts herself into current
discussions around neurodiversity as a critical form of biodiversity. She reappropriates and
redefines some of the clinical terms used to describe her own neuro-atypicality:
echolalalia
a language all its own, meaning understood in echoed
mirrors whose lean toward each other reflects the
common interdependence of living and unliving beings on
each other
stims
emotion as movement, movement as emotion. body
expressiveness in a language broader and deeper than the
linear word can convey; ceremony;
a means of calm and a physical translation of joy. (Brown et al. 430)
This is a disability poetics characterized, to quote Jim Ferris, by “a challenge to stereotypes

and an insistence on self-definition; foregrounding of the perspective of people with disabil-
ities; [and] an emphasis on embodiment, especially atypical embodiment” (Black et al. 22). Its
emphasis on embodiment not only exceeds notions of normalcy but also exceeds notions of
the human (for its witnessing of the “common interdependence of living and unliving beings”).
Meunier indigenizes her disability poetics, perhaps most notably through her invocation of
ceremony. Connecting the disabled poet to her ancestors and her home territory, ceremony is
one way of performing what Leanne Simpson has called one of the most radical and important
things that contemporary Indigenous people can do: “put our bodies on the land.” This is not
necessarily an ableist call. Historically and traditionally, of course, as we saw with Alexie, it was
vital for tribal communities to be able to convene, physically, in spiritually and economically
sustaining places. But in cases where disabled bodies might not be able to access traditional ter-
ritories and sacred spaces (or even for able-bodied people whose access to those places is now
cut off), poetry can also be a powerful form of remembering and creating such ceremonial
connections anew.
Meunier maintains a blog where she continues to ponder the relationships between broken
Indigenous bodies and broken Indigenous lands:
…I need my scars to be
the best thing you see about me
…
and I need to see every pipeline
shut down on the evening news
as a memorial to genocide
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Siobhan Senier
…I need
this water like I need this body,
these blown veins, this scarred body
and the land is my body is the land is
your body is the land, is nibi, is niiyaw (“September 16, 2017”)
Ojibwe has no single word for “body”; the stem “iiyaw” requires a prefix, such that “giiyaw”
means “your body” and “niiyaw” means “my body.” Meunier’s juxtaposition of this word with
“nibi,” the word for “water,” visually and sonically dismantles distinctions between “this body”
and the land, between individual addiction in the form of “these blown veins” and global
capital’s addiction to extractive industry in the form of pipelines. The poem lyricizes what
anthropologist Zoe Todd (Métis) describes as a millenia-old Indigenous philosophical orienta-
tion toward interconnected “legal theory, human-animal relations and multiple epistemologies/
ontologies” (14). For Indigenous writers, this interconnection surpasses the simple acknowledg-
ment of interdependence (“everything is connected”), to affective identification with the land,
and with other-than-humans.
For example, Cheryl Savageau (Abenaki) uses the term “crazywoods” to describe her
experiences with bipolar/manic depressive illness in her memoir, Out of the Crazywoods (2020).
“Crazywoods” is part metaphor, to be sure, one that enables Savageau to explore “those cre-
ative bursts/that episodic joy” that are one facet of bipolar experience: “there are brilliant
berries/in the crazywoods.” But her use of environmental images goes far beyond metaphor
into identification:
You have to be
a little bit
crazy
to live in the crazy
woods you have to
look through the eyes
of the old ones…
you have to greet
the wind you have to
throw back your head
and howl
We can read the word “crazy” as an intentional reclamation, a la Mad Pride. And we can read the
howling and the greeting of the wind as not just performance, but as deep identification with an
ecosystem that is part of Savageau’s northeastern homeland, an identification with ancestors and
with other-than-humans. This is more than quaint cliché: reading such passages intentionally,
with consideration for the intersections between Indigeneity and disability, we can situate them
as contributions to this emerging intersectional canon.
Colonialism
What abrogates Indigenous peoples’ sovereignty –their ability to care for, and be cared for
by, their lands –is, of course, colonialism. Many scholars in Native American and Indigenous
Studies prefer to speak of settler colonialism rather than “post-colonialism,” on the grounds that
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there is no “post” in colonization for Indigenous people. Following Patrick Wolfe, who has
described settler invasion as “a structure not an event” (2), Native American and Indigenous
Studies scholars have sought to underscore the ongoing structural violence of colonization.
In her book The Ecological Other (2013), ecocritic Sarah Jaquette Ray reads Native American
literature as a sustained critique of extractive, colonialist capitalism, precisely through what she
finds is its “trope of the disabled body” (84). Her identification of this trope opens up new pos-
sibilities for authors like Alexie, who have not previously been read as disabled. For instance,
even his earlier short story, “What You Pawn I Will Redeem,” attends to the interconnections
between disease and colonial violence. The story follows an alcoholic narrator through 24
hours in which he tries to raise money to reclaim his grandmother’s regalia from a pawn
shop, only to drink every dollar away as he earns it. Peppered throughout this apparently
pathological picaresque are references to the damage done to tribal lands and people: to the
Spokane Reservation’s uranium mine, which the narrator’s father believes gave his grandmother
cancer; to the presence of “three Aleut cousins,” drawn to Seattle in hopes of finding gainful
employment, now homeless; and indeed to the wholesale theft of Native cultural items like
the grandmother’s regalia. “I am living proof of the horrible damage colonialism has done to
us Skins,” the narrator says, “But I’m not going to let you know how scared I sometimes get of
history and its ways” (171). Alexie’s trademark humor and sarcasm have sometimes masked his
sharp critique of colonialism and the ways that it has sickened Native people and their lands.
We might say, then, that illness and disability are prevalent in Indigenous literature because
they are so prevalent in Indigenous communities; further, that disabled Indigenous writers are
revealing how illness and disability are direct products of colonial history. One of the most
sustained colonial traumas visited upon Indigenous people worldwide is the removal of chil-
dren from tribal communities, either through off-reservation boarding schools or systematic
out-adoption. Canada had the “Sixties Scoop,” during which tens of thousands of Aboriginal
children were taken from their parents and given to white middle-class families for adoption
or fostering. In the United States, the Indian Child Welfare Act was passed in 1978 to address a
similar, systemic removal of Native children from their families and tribal communities. These
adoptions were predicated on the ideology that Indigenous families were pathologically “unfit”
to care for their children, who could only be “saved” by removal. A further cruel outcome of
this practice was that many of the children were further traumatized by the experience. In
the 1990s, Carol Locust (Cherokee) conducted a study of Native American adults who had
experienced out-of-culture adoptions and concluded that the practice caused lasting psycho-
logical damage. Labeling this “split feather syndrome,” she found that her study participants
experienced overwhelmingly (1) the loss of Indian identity; (2) the loss of family, culture, heri-
tage, language, spiritual beliefs, tribal affiliation, and tribal ceremonial experiences; (3) growing
up feeling “different”; (4) experiencing discrimination; and (5) cognitive differences in learning
style. She identified a “reciprocal possessiveness of cultural identity” among her respondents, “a
defiant, almost fierce pride in being American Indian.” Some of these effects are explored in
Two Worlds (2012) and Called Home (2014), which anthologize personal memoirs and studies of
Native Americans who were adopted away from their Indigenous cultures.
In addition to trauma and split feather syndrome, boarding schools created devastating
physical illnesses. They ushered in massive epidemics of tuberculosis, for example. In her as-
told-to autobiography, Madonna Swan: A Lakota Woman’s Story (1991), Swan recounts how she
contracted the disease at a boarding school away from her home on the Cheyenne River
Reservation in South Dakota. She was institutionalized for many years at the Sioux Sanatorium
in Rapid City, subjected to forced rest, lung compression, and the surgical removal of one lung
and all of her ribs on one side, which left her disabled. Worse, tuberculosis carried a profound
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Siobhan Senier
stigma, and her tribal community initially shunned her upon her release from boarding school.
Her story suggests that not only did colonial institutions create her physical disability, but that
colonial ideologies also permeated the culture on her reservation, inducing her fellow tribal
members to construe disability as shameful or dangerous.
Blood
Indigenous people worldwide have been bedeviled by colonial ideas about “blood,” expressed
in bureaucratic formulas for reckoning their descent and identity. Teves and her colleagues
explain that, historically, “blood-
quantum laws were deployed to racialize Native peoples,
replacing Native senses of belonging and kinship, which varied across tribal communities before
the twentieth century” (200). Though colonial governmental policies vary from country to
country, many have this in common: the ideology of blood quantum helps administer and
manage populations that have long-standing claims to particular resources. If, for example, as
in the United States, a person needs a particular “percentage” of blood to qualify as “Native
American” and access particular resources (e.g., health care or educational scholarships), then
colonial governments can use historical realities like exogamy to show that there are fewer
Indians to make claims on resources. In other words, the idea of “blood purity” underwrites
Indigenous land and resource dispossession.
One question, then, is how tribal communities and individual authors push back against
these ideologies. Elissa Washuta, whose brilliant memoir, My Body Is a Book of Rules (2014),
documents her experiences with bipolar syndrome, is acutely aware of how both her Indian
identity and mental health have been managed and administered. She says,
When I tell people I’m Native, they often ask,“How much?” It seems to be a reflex… .
I don’t know why anyone cares to know my quantum, but I never want to be rude.
I am three-thirty-seconds Indian: one-sixteenth Cascade and one-thirty-second
Cowlitz. Since the Cascade tribe has been split into pieces, I am enrolled Cowlitz.
When the Cascade leaders were hanged, all the other Cascade Indians were rounded
up by Lieutenant Phil Sheridan, put on an island, and told that they would be shot if
they tried to leave.You know Sheridan because you’ve heard, “The only good Indian
is a dead Indian.” He was talking about me because he was talking about Indians like
my great-great-g reat-grandpa Tumalth, whom he hanged on March 28, 1856. (15)
For Washuta, there is a straight line running through her tribe’s and family’s traumatic history,
the ways that her Indian identity has been legislated, and the trauma to her own bodymind.
When she arrives at college, where she learns “that white boys don’t care if you’re legitimately
enrolled Cowlitz if they think you robbed their college education coffers of their hundred
thousand dollars they worked toward through countless hours holding a tuba on a high school
football field” (4), she starts binge drinking and starving herself:
…my body, never a temple, became a haunted house. I tried to reduce the number of
rooms I carried, shutting the doors on my love handles, narrowing the hallways of my
loose upper arms, and collapsing the great hall of my gut. If I made myself into a tiny
studio apartment, I reasoned, I might banish all the ghosts that clung to my bones. (5)
Hovering over the college experience, and her adult experience in the mental health system, are
sets of rules: warnings about the dangers of alcohol written on dorm hallway bulletin boards and
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medication bottles; report cards that document her academic work; and psychiatric reports that
chart her (non)compliance. Washuta’s is in many ways a bleak story. Just as blood quantum itself
“may be a tragically necessary condition for the survival and vitality of many individuals and
communities,” because it helps to defend them from fraudulent claims against limited resources
(Pauline Strong, qtd. in Teves 206), so too does Washuta describe medication that helps manage
her bipolar as a necessary evil: “my body is decaying as I let my brain marinate in trauma” (51).
And just as Native communities use constructs of blood and kinship in complex ways to their
own ends,Washuta uses her writing to reconstruct this historical kinship.Where Savageau writes
of her bipolar through identification with land and water, Washuta reimagines family:
The doctors keep asking about my family.They want to know who was bipolar before
me… . I imagine Tumalth, the twenty-five-year-old headman, in a psychiatrist’s office,
staring at his ankles, divulging his anxiety about the future. I hear Mary shaking a pill
bottle like a rattle. I can’t tell the doctors what they want to hear; we were without
diagnoses until I fell. Bipolar disorder has the clinical film of a white man’s inven-
tion… . There is no act of neurochemical balancing that can restore order to [our]
dismantled world. I do not think I was predestined for brokenness –this world of
ours has shown itself to have no sense of order to make such a feat possible –but I’m
learning to talk to the ancestors, listen for answers, stay awake in dreams, and let those
loved ones erase the muddy corners of my brain so I might learn all over again how
to know anything at all. (180)
Tradition and Indigenous epistemologies

Penelope Kelsey (Seneca descent) also uses notions of belonging and kinship to argue that the
Madonna Swan narrative, though marketed as a story of “perseverance,” can be read against the
grain of that form that is so problematic for Disability Studies: the overcoming narrative. To
Kelsey, Swan’s gradual acceptance back at Cheyenne River is less interesting for her individual
triumphs over her disability than for “that community’s progressive decolonization of its care of
the ill and disabled” (196). In this reading, the restoration of kinship bonds is a form of resistance,
both to colonization and to colonial constructions of disability. It is a way of reclaiming trad-
itional forms of social organization, and traditional epistemologies that produce very different
understandings of bodily and mental difference.
Mississauga Ojibwe actor Tristan Thunderbolt’s song “Broken Ears” follows a similar trajec-
tory to Kelsey’s interpretation of the Madonna Swan story.Thunderbolt, a graduate of Gallaudet,
writes from the point of view of a ten-year-old boy struggling to accept his deafness.
I have been to the reservation tent revivals to get my hearing back

God must not exist ‘cause I’m Deaf, forever
No healings, no sage, no feathers nor sweat lodges
Can help these broken ears of mine, ever. (34)
But this youthful despair is overturned by an elder who tells him “you do not need to hear it/
It’s in your heart, be proud,” and gives him the “tribal name of Broken Ears” (34). By the end of
the song, this moniker is a marker of pride and tribal belonging:
From the grave of my Chief who named me Broken Ears

Thanks for your wisdom, I know I have nothing to fear. (34)
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Siobhan Senier
In addition to striving to decolonize collective attitudes toward disability, there is some evidence
that tribes also devote their limited resources to trying to make their built environments more
accessible. Everett Soop, a political cartoonist from the Blood Reserve in Alberta, lived with
muscular dystrophy, and seems to have experienced considerable isolation –partly as a result of
his disability, and partly because of his years of contentious involvement in tribal politics. One
day in October of 1981, he seemed to hit the limits of his sardonic attacks on his fellow tribal
members:
On behalf of the handicapped people of the Blood Reserve, I asked for a handicap
bus and other services for these “Yearees” in the Year of the Disabled People. And what
does the council and chief do? They not only fulfilled my wishes, but gave suggestions
as to where we could get additional help. These despicable idiots deliberately insulted
me by trying to be human.
I was astounded by their extreme concern and with their undisguised display of
traditional values of generosity. I realized these were my people (that I did not vote for)
and they were actually and practically HUMAN!
Our chief and councilors have heard my feelings. They have made my heart soar
like an eagle. They proved that they have a heart –especially for the handicapped
people. This kind of gesture makes me feel so good that I don’t think I’ll ever do
another insulting cartoon about them –until next time. (119)
1981 was indeed declared “The International Year of Disabled Persons” by the United Nations.
Some people mocked the 1981 declaration as shallow, including, it would seem, Soop himself.
But his surprised reaction suggests that a local tribal government did use it as the occasion to
establish some policies that have in fact endured (Grinder S13).
As the Madonna Swan story indicates, tribal communities are not utopias, and disability
stigma is hardly unknown there. But even Swan recalls how more traditionally-minded elders
challenged colonial thinking: when Swan’s house was flagged with red tags to indicate that
someone inside had TB, her grandmother stormed over and tore the tags off the house, saying,
“She’s not bad –she’s going to get well!” (63). Some Indigenous intellectuals go so far as to say
that disability discrimination did not exist before settler colonialism. Lavonna Lovern contends
that “ ‘disability’ is created and perpetuated primarily according to Western constructs…[not] a
universal, but rather a product of Western ideology and colonization” (308). This claim is not
necessarily romantic stereotyping, nor does it preclude an acknowledgment of variation among
tribes. It does recognize, however, that precolonial societies saw fewer physical impairments
and diseases of the kinds that became common after European invasion, and that those soci-
eties did not necessarily construe disability as a category of otherness. Sean Teuton observes
that “in many oral traditions, disability is a paradoxical source of power” (581). He notes that
the Haudenosaunee Great Peacemaker, Dekanawida, had a speech impairment; that Tecumseh’s
brother, the Shawnee Prophet Tenskwatawa, was blind in one eye; and that the Cherokee scholar
Sequoyah had one leg shorter than the other. What Teuton is describing here are oral traditions
that, in some ways, effectively anticipated some of the insights of early Disability Studies –that
disability is a construct dependent on its context, and that it can in fact be a valued capacity.
The structure-not-event of colonialism, therefore, with its attendant attacks on Indigenous
sovereignty and Indigenous lands, has clearly worked to disable Indigenous bodies and nations.
At the same time, it seems clear that reconnection to traditional territories and to the cultures
that coevolved with those territories has allowed tribal communities to “accommodate” som-
atic and cognitive difference in powerful ways. Literature written by Indigenous veterans,
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including Philip Red Eagle, is demonstrating how traditional ceremonies can be more effective
methods of coping with PTSD than individualized treatments espoused by Western medicine.
As Gros Ventre psychologist Joseph Gone puts it, given that “the epidemic of dysfunction”
within some tribal communities has been the direct result of “the Euro-American disruption of
[tribal] interpersonal relationships,” “it stands to reason…that the return to right relationships
through revitalized ritual practice would be the most appropriate and effective of therapeutic
interventions” (296). With national and international attention currently trained on Indigenous
resurgence movements –on the highly visible protests against projects like the Dakota Access
Pipeline and the resultant violence against Indigenous bodies –this is a timely moment to intro-
duce Indigenous sovereignty and land claims into discussions of disability.
Note
1 The relatively recent designation “Native American and Indigenous Studies (NAIS)” aims to make space
for three disciplinary strands that have previously been in tension or contest: “tribal nation specificity,
Indigenous literary nationalism, and trans[national]-Indigenous methodologies” (2). I follow common
practices in this field by capitalizing “Indigenous” and using authors’ preferred spellings for their tribal
affiliations, indicated parenthetically after their surnames. Because of space constraints and my own
research focus, the article at hand focuses largely on Native North America.
Works cited
Alexie, Sherman. “What You Pawn I Will Redeem.” Ten Little Indians, Grove Press, 2003, pp.169–94. The
New Yorker, www.newyorker.com/magazine/2003/04/21/what-you-pawn-i-will-redeem.
———. You Don’t Have to Say You Love Me. Little, Brown and Company, 2017.
Barker, Clare. Postcolonial Fiction and Disability: Exceptional Children, Metaphor and Materiality. Palgrave
Macmillan, 2012.
Black, Sheila, et al., editors. Beauty Is a Verb: The New Poetry of Disability. Cinco Puntos Press, 2011.
Brown, Lydia, et al. All the Weight of Our Dreams: On Living Racialized Autism. Autism Women’s
Network, 2017.
Couser, G.Thomas. “Raising Adam: Ethnicity, Disability, and the Ethics of Life Writing in Michael Dorris’s
The Broken Cord.” Biography, vol.21, no.4, Fall 1998, pp.421–44.
Couzelis, Mary J. “‘Who We Was’: Creating Witnesses in Joseph Bruchac’s Hidden Roots.” Journal of Literary
and Cultural Disability Studies, vol.7, no.2, May 2013, pp.159–74.
Farnell, Brenda. Do You See What I Mean? Plains Indian Sign Talk and the Embodiment of Action. University of
Nebraska Press, 2009.
Gone, Joseph. “‘We Never Was Happy Living like a Whiteman’: Mental Health Disparities and the
Postcolonial Predicament in American Indian Communities.” American Journal of Community Psychology,
vol.40, 2007, pp.290–300.
Grech, Shaun, and Karen Soldatic. Disability in the Global South: The Critical Handbook. Springer, 2016.
Grinder, Barb. “Society Offers Services to Blood Disabled.” Windspeaker Magazine, vol.13, no.1,
1995, p.S13.
Kelsey, Penelope Myrtle. “Disability and Native North American Boarding School Narratives: Madonna
Swan and Sioux Sanitorium.” Journal of Literary & Cultural Disability Studies, vol.7, no.2, 2013,
pp.195–211.
Locust, Carol. “Split Feathers Study.” Pathways, vol.13, no.4, 1998.
Lovern, Lavonna. “Indigenous Perspectives on Difference: A Case for Inclusion.” Journal of Literary &
Cultural Disability Studies, vol.11, no.3, 2017, pp.303–20.
Lovern, Lavonna L., and Carol Locust. Native American Communities on Health and Disability: Borderland
Dialogues. Palgrave MacMillan, 2013.
Meunier, Jen. “September 16, 2017.” nerve in the curve. https://nerveinthecurve.wordpress.com/2017/09/
16/september-16-2017-after-the-water-walk/. Accessed September 21, 2019.
Paris, Damara Goff, et al. Step into the Circle: The Heartbeat of American Indian, Alaska Native, and First Nations
Deaf Communities. AGO Publications, 2002.
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Ray, Sarah Jaquette. The Ecological Other: Environmental Exclusion in American Culture. 2nd edition, University
of Arizona Press, 2013.
Red Eagle, Philip. Red Earth: A Vietnam Warrior’s Journey. Salt Publishing, 2007.
Savageau, Cheryl. Out of the Crazywoods. University of Nebraska Press, 2020.
Soop, Everett. I See My Tribe Is Still Behind Me! Glenbow Museum, 1990.
Teuton, Sean Kicummah.“Disability in the Indigenous Americas.” The World of Indigenous North America, ed.
Robert Warrior, Routledge, 2014, pp.569–93.
Teves, Stephanie Nohelani, et al., editors. Native Studies Keywords. University of Arizona Press, 2015.
Todd, Zoe. “An Indigenous Feminist’s Take On the Ontological Turn: ‘Ontology’ Is Just Another Word for
Colonialism.” Journal of Historical Sociology, vol.29, no.1, 2016, pp.4–22.
Thunderbolt,Tristan. “Broken Ears.” Introduction to American Deaf Culture, ed.Thomas K. Holcomb. Oxford
University Press, 2013, pp.24–25.
United Nations, Commission on Human Rights. United Nations Declaration on the Rights of Indigenous
Peoples. United Nations, 2007.
Washuta, Elissa. My Body Is a Book of Rules. Red Hen Press, 2014.
Wolfe, Patrick. Settler Colonialism and the Transformation of Anthropology: the Politics and Poetics of an Ethnographic
Event. Cassell, 1999.
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2
DISABILITY IN BLACK
SPECULATIVE FICTION
Sami Schalk
In her essay “Positive Obsession,” the late Octavia E. Butler, a black woman science fiction
writer with dyslexia, notes that she is often asked: “What good is science fiction to black
people?” (Bloodchild and Other Stories 134). In response, she writes:
What good is any literature to Black people? What good is science fiction’s thinking
about the present, the future and the past? What good is its tendency to warn or to
consider alternative ways of thinking and doing? What good is its examination of the
possible effects of science and technology, or social organization and political direc-
tion? At its best science fiction stimulates imagination and creativity. It gets reader
and writer off the beaten track, off the narrow, narrow footpath of what “everyone” is
saying, doing, thinking.
(Bloodchild and Other Stories 134–35)
In these rhetorical questions, Butler echoes what writers and scholars of science and specula-
tive fiction have consistently argued: that the unlimited possibilities of speculative fiction have
important liberatory potential for marginalized people (Barr; Kilgore; Lavender;Vint; Melzer).
Speculative fiction is an umbrella term for a collection of non-realist genres including science
fiction, fantasy, horror, magical realism, utopian and dystopian literature, alternative history,
futuristic fiction, and more. As Sandra Jackson and Julie E. Moody-Freeman write, “the primary
question posted by writers of speculative fiction is, what if?” (2). Using the term speculative
fiction allows for the inclusion of any non-realist texts that imaginatively grapple with questions
of “what if?” even if those texts do not include the science and technology foundational to the
more specific yet also more common category of science fiction.Writers from marginalized groups
in particular have used the genre of speculative fiction to imagine alternative pasts, presents, and
futures which can warn, teach, give hope, provide escape, or envision worlds without oppression
or without the identities upon which certain oppressions are based.
More specifically, this chapter focuses on black speculative fiction; that is, speculative fiction
written by authors of African descent, and the representation of disability within this area of
fiction. While the scholarship on disability in black speculative fiction is still relatively small and
emergent, the representations nonetheless exist, awaiting scholarly exploration by those con-
versant in the fields of disability studies, critical race theory, and literary criticism. This chapter,
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Sami Schalk
therefore, will provide overviews of the genre of black speculative fiction and the scholarship on
disability in speculative fiction. I will then bring these areas together to provide methodological
suggestions about how to approach analyzing disability and diverse bodyminds in black specu-
lative fiction. In this chapter I use term bodymind after Margaret Price. It is a feminist disability
studies concept that refers to the inextricability of mind and body which seeks to emphasize
how processes within and outside of our being impact one another in a myriad of unpredictable
ways that cannot be cleanly divided from one another. Finally, I demonstrate joining critical race
and disability studies approaches to analyzing speculative fiction in brief readings of example
texts. The intent of this chapter is less to provide an exhaustive catalog of representations of dis-
ability in black speculative fiction and more to offer the tools to interpret these texts in ways
that remain simultaneously attentive to issues of disability, race, and genre.
Black speculative fiction: an overview

Black speculative fiction is a robust genre that encompasses a wide range of texts in terms of
topics and aesthetics. While the bulk of black speculative fiction has been written since the
1970s, some of the earliest black speculative fiction was written in the early twentieth century,
such as W. E. B. DuBois’s 1920 short story “The Comet” about a white woman and black man
who may be the only survivors after a comet hits New York, and George Schuyler’s 1931 Black
No More, a satirical novel which represents the social and political chaos that ensues when a
black scientist develops the technology to make black people appear white. In each of these
early instances, some of the common themes in black speculative fiction are already present,
including imagining how racial identity and race relations change as environmental and social
contexts shift. A fundamental aspect of black speculative fiction is challenging the assumption
readers have about key social systems such as race, gender, sexuality, and disability. As Nalo
Hopkinson states in an interview:
If I were to write mimetic fiction, I’d be to some extent limited by what is known of
the world…However, in fantastical fiction, I can directly manipulate the metaphorical
structure of the story. I can create a science fictional world in which relative fatness
or slimness has about the same significance as eye color, but only persons under five
feet, five inches are considered beautiful…In other words, one of the things I can do
is to intervene in the readers’ assumptions by creating a world in which standards are
different.
(qtd in Nelson 100–01)
In speculative fiction authors morph social systems of power in imaginative, exciting, and
terrifying ways.
Historically, the genre of speculative fiction, especially futuristic science fiction, has imagined
worlds in which contemporary social categories no longer matter or no longer exist. However,
representations of these worlds often default to norms of whiteness, able-bodiedness, mascu-
linity, and heterosexuality. Rather than representing marginalized people or grappling with
the challenges of creating a world without racism, ableism, sexism, homophobia, and other
oppressions, many early writers of speculative fiction avoided current social issues by creating
new Others such as aliens, cyborgs, and robots which serve as indirect metaphorical stand-ins
for real-world marginalized groups. Writers of black speculative fiction have developed ways to
represent people of color and other minorities and grapple explicitly with issues of oppression.
These authors do this even as the genre of speculative fiction is often considered lesser,
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Disability in black speculative fiction
nonliterary, apolitical, juvenile, and escapist. Despite black literature’s tradition of realism, which
sought to use writing to improve the situation of black people via raising awareness and creating
positive representation, writers of black speculative fiction have consistently demonstrated the
incredible political and literary potential of the genre (Lubiano; Jarrett).
The social and political value of black speculative fiction is evident in some of the key
terms of the genre. These include Afrofuturism, a term coined by Mark Dery to designate black
representations of technology and futurity in a variety of media; or visionary fiction, a term
coined by Walidah Imarisha and adrienne maree brown to describe fiction that uses non-realism
to explore social issues in a way that centers marginalized people and exposes power inequity
with the intent of creating social and political change (Dery; brown; see also: Womack). Leading
writers discussed under these categories of Afrofuturism and black speculative or visionary
fiction include Octavia E. Butler, Samuel R. Delany, Nalo Hopkinson, Nnedi Okorafor, Nisi
Shawl, Steven Barnes, Tananarive Due, N. K. Jemisin, Andrea Hairston, Colson Whitehead,
and Toni Morrison. Further, Sheree Renée Thomas’s Dark Matter anthologies are important
collections of black speculative fiction across various historical periods. The political and social
impulses of much black speculative fiction is not, however, limited to racial concerns, but also
engages frequently with gender and sexuality and, increasingly, disability as well.
The role of disability in speculative fiction generally is an important, though sometimes
vexed, issue. While speculative fiction texts, particularly futuristic fiction, have often imagined
predominantly nondisabled worlds and futures in which disability is wholly prevented or cured
through advanced technology, several disability studies scholars have noted that the genre
seems nonetheless obsessed with disability and shifting embodiments (Bérubé “Disability and
Narrative” 568; Siebers 7; Kafer 20; Cheyne 148). Just as critical race scholars of speculative
fiction have noted how aliens and other non-realist beings raise issues of race even without the
presence of racialized humans, disability studies scholars have insisted that speculative fiction’s
engagement with changing bodyminds, technology (medical and otherwise), and new species is
very much about the concepts of disability and ability.
Research on disability and speculative fiction is still emergent. Nonetheless, the existing
disability studies scholarship on speculative fiction has been key in understanding how the
genre can reveal the social and contextual nature of disability; it also helps us to consider
how speculative fiction invites reader to imagine how disabled people might exist in the
future and alternative worlds (Allan; Vanderhooft; Moody; Arndt and Van Beuren; Newman-
Stille; Schalk Bodyminds). Given the burgeoning nature of this area of research, the body of
scholarship on disability in black speculative fiction specifically is understandably even smaller
and it is overwhelmingly focused on the work of Octavia E. Butler who almost consistently
wrote black disabled female protagonists (Shawl “Invisible Inks”; Obourn; Pickens; Curtis; or
Schalk Bodyminds; Schalk “Experience, Research, and Writing”; Schalk “Interpreting Disability
Metaphor and Race”). Black writers of speculative fiction often represent disability and typic-
ally do so in ways that must be analyzed in conjunction with issues of race. In the next section,
therefore, I offer two overarching and interrelated methods that are essential to analyzing dis-
ability in black speculative fiction: using disability studies as an analytical approach and reading
from an intersectional perspective.
Approaches to analyzing disability in black speculative fiction

In order to fully grapple with how disability appears in black speculative fiction, one must first
understand disability studies to be not an object-oriented area of study, but, as Julie Avril Minich
argues, a “mode of analysis” which “involves scrutinizing not bodily or mental impairments but
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Sami Schalk
the social norms that define particular attributes as impairments, as well as the social conditions
that concentrate stigmatized attributes in particular populations.” Understanding and using dis-
ability studies as a methodology allows scholars to focus on the social norms which produce (dis)
ability, the historically and culturally specific system of bodily, mental, emotional, and behavioral
norms which creates, ranks, and evaluates categories of disability and ability with real material
effects. (Dis)ability is an essential term to enacting this approach because it works as a parallel to
terms like race and gender while also conceptually allowing for the inclusion of issues of illness
and disease which may not necessarily fit within the legally or medically defined category of
disability as we currently understand it (Schalk “Critical Disability Studies”).
The inclusion of illness and disease within the (dis)ability system and within a disability
studies methodology is particularly important for those studying black speculative fiction and
work by marginalized writers in general because health disparities due to poverty, lack of access
to health care, and discrimination within medicine means that black and other people of color
are more likely to contract illnesses and diseases and more likely to experience secondary dis-
abling health effects as a result. One of the many themes of black speculative fiction, especially
Afrofuturist fiction, is how medical technologies and advancements may be used, misused, or
disproportionately available to some (white, wealthy, Western) populations over other (black,
brown, poor, Global South) populations.1 As a result, scholars seeking to be attentive to disability
and race must include illness, disease, and the ableist, racist, sexist, and classist activities of the
medical industrial complex within their understanding of the (dis)ability system.
By understanding disability studies as a method to analyze (dis)ability, scholars of specula-
tive fiction can better account for how disability is defined and redefined in non-realist worlds
where the expectations, possibilities, and limits of bodyminds are different from that in our
contemporary world. In particular, scholars of speculative fiction must be able to argue that dis-
ability is specifically defined within the worlds of the texts and explore why a character should
or should not be considered disabled. While some texts represent characters with realist disabil-
ities, such as Calamity’s two fused fingers in Nalo Hopkinson’s The New Moon’s Arms (2007),
the social meanings of these realist representations of disabilities are often shifted in speculative
fiction. In The New Moon’s Arms, Calamity is a “finder” and her fused fingers itch whenever
she has a menopausal hot flash, after which lost things suddenly appear out of nowhere. Her
disability, which has relatively little impact on her life otherwise, thus becomes tied to the
magical changes occurring in her bodymind. Other texts represent characters with non-realist
disabilities like Lauren Olamina’s hyperempathy in Octavia E. Butler’s Parable books, which
readers must learn about and understand wholly from the texts alone. In the Parable books,
hyperempathy is a congenital disease that causes people to feel the pain and pleasure of those
around them. To the nondisabled characters in the texts, hyperempathy is considered a delusion
by some and magic or extrasensory perception by others, but to the “sharers” who live with
the disease in this dystopian world, it is a mostly disabling condition that is best left undisclosed
except to trusted loved ones as this disability makes sharers especially vulnerable to attack and
abuse. Scholars interpreting disability in black speculative fiction must be able to recognize the
flexible definition of disability within each text and not assume that realist definitions of (dis)
ability will apply.
If we take seriously the argument that disability studies is a method rather than an object-
oriented area of study, then scholars of black speculative fiction must also look beyond disabled
characters alone. As Michael Bérubé argues “disability and ideas about disability can be and have
been put to use in fictional narratives in ways that go far beyond any specific rendering of any
disabled character or characters” (The Secret Life of Stories 2). These “deployments” of (dis)ability,
as Bérubé refers to them, are moments at which a text engages with concepts and themes of
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disability and ability even in the absence of an explicitly disabled character. This is important
in speculative fiction where fictional diseases, technologies, or events threaten to alter accepted
aspects and norms of human bodyminds and behavior, such as the encounters with aliens in
Butler’s Lilith’s Brood (2000) which produce new alien-human hybrid children and genetically
enhanced adult humans, or the technology in Nisi Shawl’s short stories “The Might Phin” and
“Deep End” which places the minds and memories of prisoners, many of whom are racialized
and/or disabled, into the cloned bodies of white, wealthy nondisabled individuals who want
their DNA propagated on a new planet. In each of these cases, issues of (dis)ability and race lie
at the heart of human concerns with these alterations to bodyminds.
The second major method for analyzing disability in black speculative fiction is to read
from an intersectional perspective. This perspective pays attention to not only how systems of
oppression intersect in the lives of individuals, but also how systems of oppression operate in
mutually constitutive ways. In other words, in addition to approaching (dis)ability as a system
of norms that is contextual and mutable within speculative fiction, scholars of black specu-
lative fiction must also grapple with how (dis)ability intersects and mutually constitutes race
as well.
An intersectional perspective is attuned to how multiple systems of privilege and
oppression operate in an individual’s life. In the case of interpreting fiction, therefore, one
must understand, for example, a gay black disabled man character experiences ableism, racism,
and homophobia alongside male privilege. This aspect of reading intersectionally operates
relatively similarly in realist and non-realist contexts, though scholars of speculative fiction
must maintain an awareness that race, (dis)ability, gender, and sexuality may be defamiliarized
or altered in a text and might, therefore, operate differently. Take, for example, N. K. Jemisin’s
Inheritance trilogy in which gods and godlings roam the mortal realm and magic exists. Here,
gods and godlings have no sex or gender, though they often choose gendered presentations
when in the mortal realm. In the second book, The Broken Kingdoms (2010), the main char-
acter, Oree, is described physically in a way most readers understand as black but, in the world
of the text, black and African are not existing racial terms: she is Maro. Further, Oree is blind,
but because she is descended from both mortals and gods, she can see magic, allowing her to
move easily in spaces where magic is being used. Throughout Jemisin’s series, therefore, cat-
egories of gender, race, and (dis)ability have different meanings than in our realist world. As
a result, it is important in black speculative fiction to read for how categories of oppression
intersect in the lives of character, but also to understand how such categories are defined
within the world of the text.
An intersectional perspective, however, is not only applicable to the specific experiences of
individual characters who live at the nexus of multiple oppressions. This approach also helps
account for the mutually constitutive nature of race and (dis)ability: the fact that discourses of
blackness and disability coproduce, reinforce, and support one another. The discursive relation-
ship of disability and blackness historically has been used to justify various forms of violence and
oppression, often under the paternalistic guise of medical or moral care and protection (Erevelles;
Baynton; Dolmage). For example, both ableism and racism operate together to produce ideas
around the need to contain certain populations through incarceration and institutionalization.
Recognizing how racism and ableism both operate within carceral logics, without ignoring or
erasing the specific histories of and differences between prisons versus psychiatric institutions,
is important for solidarity and coalition. In the context of speculative fiction, looking for and
dissecting the relationship of oppressions is of critical importance because non-realist elem-
ents can easily be read as metaphors and analogies for multiple real-world social concerns. An
example of this is the X-Men series in which mutants are ostracized and oppressed in various
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Sami Schalk
ways. Scholarship on the series has interpreted mutants as queer/gay, disabled, black, Jewish, and
more.2 But rather than attempting to definitively choose one real-world group that mutants
represent, it may be more productive to read the treatment and actions of mutants as emblematic
of the similarities and mutual constitutions of various oppressive ideologies. In analyzing (dis)
ability in black speculative fiction, it is important to elucidate how a non-realist aspect of a text
can stand in for multiple issues and thereby highlight the mutually constitutive relationship of
blackness and disability.
Nalo Hopkinson’s short story “Message in a Bottle” exemplifies the need for these two
approaches (disability studies as method and intersectionality) in analyzing representations of
disability in black speculative fiction. In the story, the narrator, Greg, provides brief vignettes
about his friend’s adopted child, Kamla, over several years. Kamla is a precocious black girl with
a very large head. Early in the story, Kamla is four years old and not growing physically. She is
diagnosed with Delayed Growth Syndrome (DGS) alongside thousands of other children, all
of whom appear several years younger than they are, but with full grown heads and incredibly
high intelligence. At the end of the story, Kamla, now a ten-year-old with the physical stature
of a six-year-old with an adult-sized head, reveals to Greg that she is actually from the future, a
clone sent back in time to acquire artifacts from the twentieth and twenty-first centuries. The
clones were sent back as toddlers because it was more efficient to do so. They were genetically
engineered to physically mature extremely slowly so that they can acquire their artifacts and live
long enough to make it to the future from which they came.
Throughout the story, issues of (dis)ability abound. First, Kamla’s situation exemplifies the
context-dependent nature of disability and the need to define (dis)ability within black specu-
lative fiction. In the present world of the text, Kamla is considered disabled because of her
delayed growth despite the fact that she is healthy, not in pain, and intelligent. She is subjected
to frequent medical tests and treatment. Further, she is described as having no friends and being
bullied at school for her large head and atypical speech and behavior which is perceived as
being too adult. At the end of the story, when another person with DGS –another clone from
the future –goes public with the truth, Kamla tells Greg, “They’re probably going to institu-
tionalise me. All of us” (Hopkinson “Message in a Bottle” 24). Here it is clear that whether she
hides the truth about who she is or admits it, Kamla will continue to be considered disabled in
her present world.
The perception of Kamla as disabled and people’s uncomfortable reactions to her cannot,
however, be separated from her status as a black woman/g irl. While the story is brief, one
can infer that race and gender impact Kamla’s experience of disability, that her blackness and
girlhood further shape why people are disturbed by her different appearance and mature speech
and behavior. Kamla tells Greg that “DGS people do get abused” and that after being sent to
Earth many “were never adopted, had to make [their] own way as street kids” (Hopkinson
“Message in a Bottle” 17, 20). While it is unclear if all of the clones sent back in time are
people of color, the disability and racialized aspects of childhood sexual abuse, difficulty in being
adopted, and being put out on the street without social support networks are evident in these
few details about people with DGS.
The disability and race parallels between the situation of the clones and real-world social
issues underscores the ways in which reading this story intersectionally means not just thinking
about Kamla’s particular identities, but also how the text gestures toward the mutually consti-
tutive nature of race and (dis)ability. For instance, Kamla was genetically engineered to have
a bodymind different from those in the future where she was born. She and the other clones
are literal experiments. She explains that only about four of every ten cloned eggs was viable
for implantation and only two-thirds of those implanted resulted in a living clone. Kamla
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explains that the clones were treated well, educated, and informed about what their creators
wanted from them. Each clone was allowed to back out, but this offer can hardly be read as a
free choice at all; instead, it alludes to histories of enslavement, medical experimentation, and
contemporary concerns about the ethics of genetic engineering. The clones were given two
options. One, go back in time as toddlers with young adult minds and grow up there, being
forever perceived as disabled while attempting to find and save artifacts for the future.Two, stay
in their own present (our future) and “opt to undergo surgical procedures to correct some of
the physical changes” which would allow the clones to “reach puberty normally and there-
after age like regular people” though they would “never achieve full adult height” and there
would “always be something a little bit odd about their features” (Hopkinson “Message in a
Bottle” 19). In either choice, the clones will be subject to intense medical scrutiny and likely
be perceived as disabled forever. Like many black speculative fictional texts, Nalo Hopkinson’s
“Message in a Bottle” engages a variety of social issues, particularly in regard to the ethics of
advances in medical technology, in direct connection to issues of race and (dis)ability. The
creation of the clones/DGS people for the purpose of salvaging historical artifacts is not a
direct parallel with slavery, but it certainly shares important power dynamics with the history
of African enslavement while also containing key ethical and moral concerns of disability
studies regarding eugenic projects like genetic engineering and other medical manipulations
of bodyminds to achieve particular social norms or needs. This brief reading of “Message in a
Bottle,” therefore, demonstrates the application of the two methods discussed above for ana-
lyzing disability in black speculative fiction: disability studies as a mode of analysis and reading
from an intersectional perspective.
Conclusion
Nisi Shawl writes, “Neither black nor disabled people have any reason to be enamored of the
status quo. As disabled black SF authors we have the opportunity to re-vision the dominant
culture’s narrative” (“Invisible Inks” 44). Black speculative fiction writers have frequently and
consistently challenged the status quo around a number of social issues. At this time, disability
in black speculative fiction is less an established area of research and more a topic with exciting
potential. Scholars of disability in black speculative fiction can use disability studies as a method
rather than an object-oriented area of study. This approach means understanding disability as
one part of a larger (dis)ability system which defines bodymind and behavioral norms, including
norms of health, illness, and disease, within particular historical and social contexts. In the
worlds of speculative fiction, this means being able to define how the (dis)ability system operates
within a text’s non-realist setting to define ability and disability. Second, intersectionality is an
essential critical approach for scholars of disability in black speculative fiction. In non-realist
texts this means tracing the connections between fictional oppressions, actions, and events and
real-world oppressions, actions, and events in ways that account for the intersecting and mutu-
ally constitutive nature of oppression. In other words, the representation of power dynamics in
speculative fiction may gesture toward multiple historical and contemporary social issues rather
than serving as a clear stand-in for a single group or issue. Black speculative fiction is a par-
ticularly powerful way of representing things well outside accepted reality while, at the same
time, keeping the representation deeply connected to the experience of black people and other
marginalized groups.
These two approaches to disability in black speculative fiction require being open to mul-
tiple creative interpretations which embrace the both/and, the neither/nor of non-realism.
Rather than being mere escapism (though the pleasure of escapism should not be discounted),
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Sami Schalk
black speculative fiction can be highly political and socially attuned, refusing to limit its repre-
sentational possibilities to our contemporary racist, ableist, sexist, homophobic, classist, coloni-
alist realities. The representation of disability within black speculative fiction is no exception,
providing exciting, strange, and important representations of race and (dis)ability that warrant
more attention and appreciation from readers and scholars alike.
Notes
1 See, for example, Butler’s Parable of the Sower and Parable of the Talents, Hopkinson’s Brown Girl in the Ring,
or Koyanagi’s Ascension.
2 I make a related argument about parallels of methods of oppression in Schalk, “Interpreting Disability
Metaphor and Race in Octavia E. Butler’s ‘the Evening and the Morning and the Night’.” For more
specifically on the various scholarly readings of X-Men, see Schalk “Resisting Erasure” or Miller.
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Barr, Marleen S. Afro- Future Females: Black Writers Chart Science Fiction’s Newest New- Wave Trajectory.
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Jackson, Sandra, and Julie E. Moody-Freeman. “The Black Imagination and the Genres: Science Fiction,
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Jarrett, Gene Andrew. Deans andTruants: Race and Realism in African American Literature. Philadelphia: University
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Jemisin, N. K. The Broken Kingdoms. Inheritance Trilogy. 1st ed. New York: Orbit, 2010.
Kafer, Alison. Feminist, Queer, Crip. Bloomington: Indiana University Press, 2013.
Kilgore, De Witt Douglas. Astrofuturism: Science, Race, and Visions of Utopia in Space. Philadelphia: University
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Koyanagi, Jacqueline. Ascension: A Tangled Axon Novel. Prime Books, 2013.
Lavender, Isiah. Race in American Science Fiction. Bloomington: Indiana University Press, 2011.
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3
t4t
Toward a crip ethics of trans literary criticism
The relationship between disability and transgender is uneven across time and space; these cat-
egories are alternately regarded as mutually exclusive, odd, or unfortunate co-travelers, and/
or one and the same. For example: in the United States prior to 1990, several trans people
had some, albeit quite limited, success pursuing employment discrimination claims as disabled
people using the Rehabilitation Act of 1973. However, these plaintiffs’ use of the Rehabilitation
Act –and a few conservative senators’ opposition to extending civil rights protections to trans
people and sexual minorities –shaped subsequent federal disability law insofar as it prompted
the carving out of “gender identity disorders” and “transvestites” exclusions in the Americans
with Disabilities Act, or ADA (Colker 22–68). While homosexuality and bisexuality were also
excluded from coverage on the grounds that they are not impairments, the cluster of cat-
egories excluded in Section 511b were seen as mental impairments, guided as the legislators
were by the American Psychological Association’s Diagnostic and Statistical Manual, or DSM.
Consequently, within the U.S. imaginary as contoured by federal law, trans moved from being
ambivalently included in disability to something much more contradictory. Namely, at the turn
of the twenty-first century, the ADA’s inclusion by means of exclusion refashioned trans into
a strange kind of object: an impairment that could not be considered a protectable disability.
While scholarship at the intersection of disability and transgender tends to focus on the law,
in what follows, I will argue that the historically uneven relationship between these two terms
is also evident in the critical bodies of scholarship that have arisen around them –trans studies
has had a great deal of trouble with disability and disability studies has had a great deal of trouble
with trans. To some extent, this mutual difficulty is surprising, given that the two fields share
a sensibility, arising from a shared history of capture by medical discourses and a subsequent
critical stance with respect to medical models. Just as there is a vast body of work that takes
disability as its object, but disability studies scholars do not recognize as disability studies, the
capture of gender variance by medicine has produced, and continues to produce, a vast body
of work that cannot be said to be trans studies. In both cases, the difference is one of method
and of ethical/political commitments: while medical and adjacent fields tend to approach dis-
ability and nonnormative arrangements of sex/gender as problems of individual bodyminds to
be understood, fixed, accommodated, and/or treated, critical trans and disability studies scholars
approach them as sites from which (and for which) to scrutinize “normative ideologies…with
the goal of producing knowledge in support of justice for people with stigmatized bodies and minds”
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(Minich). In short, trans and disability studies both emerged from a rejection of medical models,
which allowed for the transsexual or disabled person to emerge as a speaking subject with a
history who, thus reconceived, could illuminate the broader cultural work of dis/ability and the
binary sex/gender system. Certainly, trans and disability studies have since grown wildly from
this starting place, but it continues to shape habits of thought in both fields, in remarked and
unremarked ways.
Within trans studies, a strong rejection of the medical model has, somewhat paradoxic-
ally, hindered an alliance between trans and disability, a dynamic that is readily apparent in the
terms of decades-long debates about whether trans people ought to pursue discrimination cases
under disability law. In a document appended to the proceedings from the 1996 International
Conference on Transgender Law and Employment Policy, for example, Shannon Minter and
Phyllis Randolph Frye argue against “the disability rights model” in part because of a worry that
doing so would “perpetuat[e]‌…the stereotype that transgendered people are inherently unstable
or disturbed” and invest “mental health professionals with too much arbitrary and unchecked
power over [trans] lives” (Minter and Frye, A-2, A-1). That is, rather than allying with critical
disability scholars and activists to contest forms of control exerted over individuals designated
as sick, impaired, and/or mentally ill writ large, a significant strain of trans discourse has instead
positioned disability “as the ‘real’ limitation from which [trans people] much escape” (Mitchell
and Snyder 2). As it emerged from the historical mess of wider trans discourse, early transgender
studies was inevitably shaped by these ongoing debates.
As a result, and through the performance of “methodological distancing” that David Mitchell
and Sharon Snyder have argued mark the “discomforting” relationship between disability studies
and other minority fields, trans studies was arguably inaugurated as an academic field through
the disavowal of disability (2). Specifically, in each of what have been considered founding
moments of academic trans studies –the publication of Sandy Stone’s “The Empire Strikes
Back: A Posttranssexual Manifesto” (1992) and The Transgender Studies Reader (2006) –trans-
gender authority was produced through the disavowal of madness. Susan Stryker, for example,
introduces The Transgender Studies Reader with an anecdote in which she attended a conference
and then, “in a fog of righteous anger…leaned into the microphone on [her] side of the room
and said, interrupting, ‘I’m not sick’ ” (“(De)Subjugated Knowledges” 1). In its original context,
Stryker’s “I’m not sick” aimed to interrupt a line of thinking that sought to exclude trans people
from queer/feminist politics and knowledge production on the basis that they were “pro-
foundly psychopathological individuals who mutilated their bodies and believed in oppressive
gender stereotypes” (“DK” 1). In this context, “I’m not sick” functioned as a powerful speech
act that cleared the room, literally and figuratively, of those who would dismiss trans people’s
authority to “be taken seriously on our own terms” (Stryker “DK” 2). In turn, trans people and
knowledge’s being “taken seriously” was a precondition for the existence of what has become
transgender studies.
At the same time, if early trans scholars sometimes staked their claim to authority by
disavowing impairment, and thereby failing to consider disability as a critical vantage from
which to trouble medico-legal norms of cognition and emotion, then it is also true that some
foundational work in disability studies likewise secured its epistemic authority through similar
failures to consider trans as itself a critical vantage. For example: one truism in disability studies
is that disability is a uniquely unfixed social category, as any of us can find ourselves inhabiting
it. For this reason, disability has seemed a prime site from which to problematize a notion
of “the human” as Man–stable, autonomous, rational, and so on. Instead, thinking with dis-
ability prompts attention to the vulnerability, interdependency, and instability that charac-
terize all human embodiment and sociality. In the course of making such arguments, some
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t4t: toward a crip ethics
scholars invoke trans and/or intersex bodies to prove their point. Mitchell and Snyder argue, for
example, that precisely because of this characteristic instability, disability studies’ relationship to
other marginalized subject positions and knowledge projects can seem strange, given that “dis-
ability was the only ‘mark’ that could impinge upon each of the other categories” (x). Anyone
could become disabled, but “one could not become ‘female’ if marked ‘male’ (without radical
surgery)” (Mitchell and Snyder x). Here trans, glossed by “radical surgery,” becomes evidence
of the relative stability of gender: crossing the gender line is regarded as profoundly difficult,
whereas anyone can cross the ability line “at any time” (Mitchell and Snyder x). Alternatively, in
one of two pieces compiled in the fourth edition of The Disability Studies Reader to which an
index search for transsexual/transgender/trans will guide a reader, Lennard Davis mobilizes trans
to the opposite effect. Rather than presenting trans as evidence of gender’s relative fixity, Davis
recruits it as evidence of the increasing instability of (gender) identity in the course of an argu-
ment proposing that the instability of disability is not exceptional, but a usefully generalizable
condition of post-postmodernity (267).
At the turn of the century, trans tended to function in disability studies as a term that did
not contain its own politics, analytics, or people; rather, similar to the trans authority garnered
through the disavowal of sick, trans was a figure that could be invoked in contradictory ways in
order to make claims about the interpretative authority of disability. In turn, such invocations
make robust trans/crip coalitions more difficult to imagine and mirror Alison Kafer’s observa-
tion that “trans essayist and activist Eli Clare,” who authored the second piece indexed as trans
in the fourth edition of the Reader, “is widely cited in disability studies, but scholars usually treat
his writings on transphobia or on transgender experiences in general as an aside to his work
on disability (as if the two were not intimately, and often explicitly, intertwined)” (156). Indeed,
the rhetorical place of trans within this vision of disability studies is a telling answer to Kafer’s
questions: “Who is included or excluded in our political imaginaries?…Where does disability
studies see or recognize itself?” (153).
Reading disability/transgender
Trans and disability, as my sketch suggests, have failed to recognize themselves in each other, a
mutual failure of consideration that is symptomatic of single-issue thinking in general, but is also
quite strange, given the past and present coappearance of trans and disabled bodies in documents
like the ADA and the DSM; in spaces like the asylum, the freak show, and the clinic; and in
persistent binds resulting from having been made objects of medical knowledge. However, in
the last decade or so, activists and scholars have begun to theorize the intersections of disability
and transgender; in turn, disability and transgender studies are increasingly recognized as co-
travelers. While this work has largely been concerned with shared sites of activism, as well as
shared mechanisms of oppression, I’m going to turn here to consider one counterintuitive area
in which trans and disability might recognize themselves in the other: the shared sensibility with
which trans and disability studies scholars have approached the study of literature.
“Disability,” writes Michael Bérubé, “demands a story” (570). The demand for narratives
about and from disabled people (what happened to you?) is a pervasive feature of both the
everyday world –endless recounting of medical history, coerced conversations with well-
meaning strangers –and literary cultural production. As a device of characterization, evidence
of a mystery to be solved, a source of textual conflict, and so on,“disability,” Mitchell and Snyder
argue, “inaugurates the act of interpretation” and “calls a story into being” (6, 55). The trouble
for literary disability studies scholars, then, is not that there is a paucity of representations of
disability in dominant literature/culture; rather, the trouble is that disability seems “tethered to
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inciting the act of meaning-making itself,” which reinforces the everyday sense that disabilities
are signs to be interpreted, stand in for something other than themselves (Mitchell and Snyder
6). In turn, the disabled body as sign underlies much of the dehumanizing treatment of disabled
people throughout Anglo-American history –from the freak show to the eugenic imaginary –
and is at odds with recognizing the humanity, what Avery Gordon has called the “complex
personhood,” of disabled folks (4).
Literary and other cultural critics in trans studies face a similar problem, as trans, too,
demands a story. Although transgender is a relatively recent category, the phenomena of sex/
gender “crossing” and ambiguity are not. Thus, from Tiresias, to stories of enslaved persons’
cross-dressed flights for freedom, to Virginia Woolf ’s Orlando (1928), what we might now call
trans characters, practices, and plots abound (cf. Snorton 55–98). However, as Emma Heaney has
argued, since at least the mid-nineteenth century capture of gender variance by sexology, trans
has circulated as fundamentally figural, allegorical. The very fact that some people live “at odds”
with the sex they were assigned has been rendered –like other deemed-monstrous bodies –“an
enigma that invites investigation” (Heaney 5). Such investigations, in turn, promise to teach a
non-trans us about gender writ large, “demonstrating the contingency and constructedness of
gender through being positioned as privileged objects of inquiry” (Malatino 403). Today, the
abstraction of trans lives into figures of gender’s contingency or transgressive potential pervades
many discursive spheres –from the classroom, to the clinic, to the novel –and as scholars like
Vivian Namaste have argued, even trans-affirmative uses of the trans allegory necessarily capture
a flattened image of trans life, in which it is always about “challenging the sex/gender system,”
never about “the banality of buying some bread, of making photocopies, of getting your shoe
fixed” (Sex Change 25). In this way, trans is rendered figural through the assumption that a trans
person’s “very existence means something outside itself,” an assumption that works against the
ability to conceive of trans lives as actually lived (Heaney 6).
As a result of these protocols of reading trans and disabled bodies, scholars in both fields
have evinced the desire for, and tendency toward, what Bérubé calls “literalism, even cen-
sorious literalism” (570). Within trans studies, the desire for literalism has manifested in every-
thing from reading practices that urge us to suppose that trans-authored narratives might
transparently and “simply” communicate “what transsexuality feels like,” to disparagements
of “the field of literary criticism” altogether for “fanc[ying trans lives] to be merely sym-
bolic” (Prosser 69; Stryker “DK” 2; cf. Namaste “Tragic Misreadings”). Paralleling this slide
from collapsing the real and the representational into critiques of literary criticism writ large,
Bérubé has also pointed out that the habit within disability studies of critiquing figural uses of
disability for failing “to do justice to the actual lived experiences of people with disabilities”
seems, taken to its most extreme register, at odds “with the enterprise of professional literary
study, dedicated as so much of it is to the interpretation of the figural” (570).While this tension
has produced innovative scholarship within both fields that propose trans and/or crip practices
of reading and approaches to metaphor, this shared status as deeply and problematically linked
to the figural is one window into the function of much of the literature that is self-consciously
trans and/or crip. For example, we might understand the proliferation of trans and disability
life writing within this frame, as it is a form that fleshes metaphor out, replaces a figure with a
complex person. Additionally, we might understand the contemporary prominence of poetry
within trans and disability culture as having to do with poetry’s status as a mode more or less
made of the figural. For persons who have been made into figures, poetry is an ideal site to
insist that “the always overdetermined metaphoric uses of disability [and transgender] efface
and distort the lived experiences of people” and to turn these metaphoric uses inside-out
(Garland-Thomson “Feminist Disability Studies” 1565).
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But the problem with disability metaphors and trans allegories is not only the emptying out
of lived experience; it’s also a problem of the ordering of narrative, of time. That is, trans bodies
are not only asked to bear the burden of allegorizing gender. Rather, as bodies linked to the very
idea of transition, trans protagonists often also function as figures for the post-modern/post-
colonial/globalized world and its discontents. This linking of individual narratives of transition
to world-historical ones underlies Jack Halberstam’s observation that “the transgender body
has emerged as futurity itself, a kind of fulfillment of post-modern promises of gender flexi-
bility” (18).While Halberstam understands this figuration of gender-flexibility-as-futurity to be
deeply contradictory insofar as it promises liberation while precisely imitating the constraining
demands of neoliberalism, to live out this figuration means inhabiting a deeply contradictory
temporality, embodying “futurity itself ” in present tense. Indeed, one of the consequences of
the construction of trans as futurity is that trans people can be, and often are, understood as
perpetually new inventions. Thus cut off from the past, trans easily comes to represent a future
that can be warded off –in the temporal logic of conservative legislation as well as in some past
and present lesbian feminist speculative fiction (cf. Salah 212–15) –rather than a present reality.
Somewhat paradoxically, then, the figuration of trans-as-futurity can make more difficult the
work guaranteeing a future for trans people.
In a related temporal bind, disability is persistently linked to the present imperfect, in the
grammatical sense of “an uncompleted action taking place at the present time,” as well as the
resonant sense of the flawed present (OED). As Alison Kafer argues, “the idea that a future
with disability is a future no one wants” is presented as a self-evident statement in dominant
cultural imaginaries, ranging from individual narratives of overcoming disability, to biomedical
discourses of cure or preemption, to speculative discourses of human perfectibility (2). Such
discourses rely on a notion of disability as a present-tense individual (or society-wide) problem
to be resolved; for this reason, disability cannot exist in the “good” futures these projects imagine
because a future with disability is “a future that bears too many traces of the ills of the present”
(2). We might understand this writing of disability in the present imperfect as adhering to a
particular, and particularly dominant, narrative logic: if an unruly body is often the impetus for
narration, then many plots –literary and otherwise –are moved along by the desire to resolve
the “problem,” to get that body under control. Davis has gone so far to suggest that such “nor-
malizing devices of plot [that] bring characters back into the norms of society” is but one of
several elements of the modern novel that make it an inherently ableist form, while scholars
as different as Sandy Stone and Bernice Hausman were likewise concerned that transsexual
autobiographies’ tendency to work toward a resolution of body and mind necessarily upholds
normative constructions of sex/gender (Davis “Introduction” 12; cf. Stone 159; Hausman 346–
347). These are critical habits of thought that emphasize the present imperfect of disability vs.
the looming futurity of trans to be held at bay.
This trouble with time has, in turn, produced speculative fiction as a potent site of trans/
crip cultural production and critique, both because it is a mode of imagining “escape[s]‌from
the current world” and alternate possibilities for trans and disabled life and because it invites
the reordering of time by sci-fi devices (time machines) and narrative devices (expanded time
frames, apocalyptic disruptions) (Fitzpatrick and Plett 440). In the following section, I’m going
to depart from the rhetorical mode of analogy that has so far structured my overview of the
field –and, indeed, marks much of the way trans and disability are thought together –by asking
a different kind of question. Not, “how is trans like disability (and vice versa)” but rather, “what
might being oriented by disability studies direct us, as trans literary critics, to do?” Although
there is not space, here, to arrive at an answer, I’ll reflect on the question by turning to just such
a piece of speculative fiction, Infect Your Friends and Loved Ones (2016), a self-published novella
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written by Torrey Peters, which both exemplifies and allegorizes the status of trans literature in
the twenty-first century.
Infect Your Friends and Loved Ones

Like much speculative fiction, InfectYour Friends and Loved Ones is propelled by a thought experi-
ment, one that makes a metaphor literal by fleshing out a habit of speech. What if, Peters asks,
transness were literally a sickness, a contagion, as various anti-trans contingents claim? To answer
this question, Peters –via her trans women characters –invents a genetically-modified superbug
that eventually renders everyone in the world unable to produce their own sex hormones,
dependent on exogenous ones, so in a “trans” position in the bioeconomy. Focalized through an
unnamed trans woman, Infect Your Friends alternates between three time frames –years before,
years after, and the day of the bug’s release –in order to tell a story about a failure of care
between two trans women amidst the society-wide failure to care for trans women. These
failures of care compound to produce a narrative animated by what Susan Stryker calls “trans-
gender rage,” a structure of feeling aimed, at once, at the impossible destruction of the world
and the necessary transformation of the self. As such, “transgender rage furnishes a means for
disidentification with compulsorily assigned subject positions. It makes the transition from one
gendered subject position to another” from, potentially, any subject position to another, “pos-
sible by using the impossibility of complete subjective foreclosure to organize an outside force
as an inside drive…Through the operation of rage, the stigma itself becomes the source of trans-
formative power” (Stryker “My Words” 249). In Infect Your Friends transgender rage plays out
these destructive aims and ameliorative possibilities at the scale of the social; Peters’ characters
respond to the “necessity of existing in external circumstances that work against [trans] survival”
by literally destroying the order of things, in the shadow of which emerges a partial, tentative
world organized by other ethics (Stryker “My Words” 244).
Infect Your Friends centers on the relationship between the unnamed protagonist and another
trans woman named Lexi, who have very little in common aside from being trans. Before her
transition, the protagonist was living out an ordinary, liberal ideal: she lived with her long-
term girlfriend, had a grandmother who passed down wealth, and was getting a PhD from
Dartmouth. Transition prompts this world’s withdrawal from her: her girlfriend will no longer
touch her, her parents vanish from her story, she drops out of school. The trouble is that, like
every melancholic transsexual before her, she is still attached to this order of things, she does
not know what else she might be. And so she moves to Seattle to live out a fantasy of a different
version of the normative good life, playing at being “a rich dude’s housewife,” living rent-free in
said rich dude’s spare apartment in exchange for sex “for about two hours, three times a month”
(33, 34). These are wildly different life arrangements, but Peters’ placing them side-by-side, the
latter as compensation for the loss of the former, suggests that logic of the latter (“the good life”
in exchange for living at the whim of another’s desire) is really only an iteration of the logic
of the former (“the good life” in exchange for living within the circumscribed, naturalized
order). But if the protagonist is willing to circumscribe her agency and her affect in order to
remain partially, tentatively attached to the terms of her former life, then Lexi does precisely the
opposite. Rather than remaking herself to fit the terms of the world, everywhere Lexi goes she
attempts to remake the world to fit her self; she is the embodiment of transgender rage. Like
Frankenstein’s monster, she is deeply scarred, making visible the damage that has occurred in
order for her to exist. Likewise, the houses she inhabits are described as in a state of abjection –
the spaces she makes are variously described as “falling down,” “on the edge,” “marred” (16, 21).
Though the two become friends, perhaps even lovers, after arranging a meeting on Craigslist,
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Lexi’s method of living is disgusting to the protagonist: she is at once “fascinated and repelled”
(23). Sianne Ngai’s gloss of Kant’s definition of disgust describes well the pair’s dynamic: “what
makes [Lexi] abhorrent is precisely [her] outrageous claim for desirability. The disgusting seems
to say, ‘You want me,’ imposing [herself] on the [narrator] as something to be mingled with and
perhaps even enjoyed” (Ngai 335). However, the definite rejection of Lexi that the narrator’s
disgust should produce is held off by various forms of proximity (categorical, geographical,
emotional) between the two. Plainly, they are both trans and lonely. Eventually, though, after
Lexi follows the narrator to Seattle, the two have a falling out around their divergent priorities.
Lexi sets out to build a life with other trans women in Seattle while the narrator continues to
fold herself into the cis logics of the world.
In several ways, Infect Your Friends reverses the trans disavowal of disability that I identified
above in order to offer a cripped trans narrative. Briefly, I understand crip as both a mode of
critique and a gesture toward doing otherwise. As a mode of critique, cripping trans involves,
following Carrie Sandahl, “spinning [the narrative habits of trans discourse] to reveal able-
bodied” and able-minded “assumptions and exclusionary effects” (37). At the same time, to crip,
like to queer, is not only to point out and reject exclusionary assumptions, but also to inhabit,
somewhat extravagantly, the debased position in order to understand what politics, ethics, might
look like, from that perspective. In these terms, Infect Your Friends is a cripped trans narrative in
two, interrelated ways. First, Peters employs what Alexandre Barile has termed “a composite
model of transness,” which, following similar propositions in disability studies, understands trans
suffering as emerging both from the cisgenderist organization of society and “the debilitating
aspects of transness” –dysphoria, post-surgical pain, etc. –that would likely persist even in other
worlds (71, 67). In Peters’ novella, that is, transfeminine embodiment is a distinctly impaired
kind of bodymind, one marked by physical scarring, ungainly bodily comportment, and unruly
post-traumatic affect. But, while this form of trans embodiment is partially produced by dis-
abling social conditions, the very conceit of the novella undermines a purely social model of
trans suffering since, far from being resolved by a new social organization, trans debility comes
to be a defining condition of all human life. Ungainliness, instability, and scarring are central
to, never disavowed from, Infect Your Friends’ image of trans. This is the second way that Infect
Your Friends crips trans: through the narrator and Lexi, Peters stages an encounter between two
strategies of trans living and politics, one which strives to hide its difference in order to meet
the world on its terms and one which displays its scars in order to insist on a different world.
In Alison Kafer’s words, this latter image of trans politics is “a politics of crip futurity” insofar as
it both imagines disability in the future and also understands disability as providing a form of
knowledge that might help shape what that future should be (3). Indeed, eventually, after being
routinely faced with external circumstances that work against her own survival, the narrator,
too, comes to embody trans rage, to be sick and scarred, and it is this transformation that ushers
in the new world.
The novella thus ends, and the world in the novella thus ends, with a transformation of the
narrator’s affect from melancholia to rage: she fully withdraws her attachment to this world,
cannot any longer bear to let it go on. While the narrator, newly infected by Lexi with the
world-ending pathogen, has the power to utterly rearrange the social order, Peters, as her author
and her double, also takes up the imperative of the novella’s title. That is, the widespread failure
to care for trans women is not only represented within the plot, but also shapes the literary
marketplace in which the novella emerged. Just as the narrator finds herself moved from an
authorized space of literary/cultural production upon her transition, Peters is a graduate of
one of the most authorizing literary institutions (Iowa Writer’s Workshop), but was prompted
to self-publish her work because, as she puts it, “the publishing industry doesn’t serve trans
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women” (75). In an interview, Peters elaborates that self-publication allows her to participate in
the literary economy in a way that reflects her primary, imagined audience –other trans woman
(“(Trans) Love”). Only outside of authorized spaces of literary production has Peters felt she is
able to tell stories in a way that accurately captures the mess of trans lives, ones that might be
emotionally resonant to a trans audience but not necessarily a cis one. Further, self-publication
allows her to distribute her work on a sliding scale, making trans lit accessible to a dispropor-
tionally impoverished trans population.
InfectYour Friends, then, both exemplifies and allegorizes the present status of trans lit. Like her
characters, Peters finds herself pushed into informal economies, having gathered tools (training,
networks, genetically modified pathogens) from authorized and authorizing institutions to be
used for her own purposes. And so, just as the novella spirals toward a theory of how a trans
woman might “relate with other trans women in ways that don’t feel so fraught that [their]
anger might end the world,” Peters’ publication method likewise spirals toward a theory of less
fraught ways of producing and circulating art, one that can imagine a trans woman as its ideal
audience (Peters “Uncut”). Both the object and the method ask: given the catastrophe of this
world, what would it mean to produce a world for one another, to care?
t4t
Care is a concept that spans the material and the affective. It is both a form of labor and an atti-
tude that one takes up with respect to another. Because it is often assumed that, in order for the
labor of care to be performed well, it must be accompanied by a genuine caring affect, care as
an ethical demand or transparent good is complicated along gendered and racial lines. Because
they have historically done the (low-paid and unpaid) labor of care, women and racialized
people of all genders have been, at various historical moments, constructed as naturally more
caring which, in turn, is used to reify this unequal distribution of labor, power, and capital.
However, on the other side of what Nirmala Erevelles has called “the dialectic of care,” care is
also a fraught concept within disability studies (194). Without rehashing the whole debate, it’s
sufficient to know that care is fraught because of the long history of violence against disabled
populations that has been legitimized through the idiom of “care.” That is, the perception of
disabled people as dependent on the care of others has been central to ongoing forms of exclu-
sion, violence, and denial of bodily autonomy. At the same time, the reality that some disabled
people are dependent on the care of others has prompted a compelling line of thinking about
how disability –precisely because it is at the heart of both the necessity and potential violence
of care –provides a potent site from which to reconceptualize ethical models of care. This
conversation about care has only recently been taken up by trans studies, though conversations
about healthcare, community building in light of trans trauma, transgender children’s bodily
autonomy, and so forth, would benefit from thinking rigorously about the ethics of care (cf.
Marvin). What ought care look like between doctors and trans patients, between parents and
trans children, between trans people ourselves? How, given unequal distributions of power and
resources –as well as the effects of these disabling conditions –might we relate to each other
in ways that “don’t feel so fraught”?
In the shadow of the end of the world, and the ongoing apocalypse of the present, Infect Your
Friends proposes the ethic of “t4t” as one answer to these questions about intracommunity care.
Recycled from Craigslist personals lingo, t4t means, simply, trans for trans. Online, t4t tends to
denote an erotic orientation or practice, but in Peters’ novella it also becomes an ethos around
which a group of trans women organize themselves in the post-contagion world where, other-
wise, the notion of community has utterly broken down. As an organizing principle, t4t works
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because no one expects it to produce a utopian form: when the narrator exclaims, “That sounds
like some kind of trans girl utopia,” she’s met with laughter:
Please.You’ve met a trans woman before, right? Do you think the words trans women
and utopia ever go together in the same sentence?…We aim high, trying to love each
other and then we take what we can get.We settle for looking out for each other. And
even if we don’t all love each other, we mostly all respect each other. (54)
The incredulous rejection of the idea of a trans girl utopia ought to be read as commentary on
the way transgender bodies have historically been used as a mark of dystopia or utopia gone
awry, but also as a sincere recognition of human limits. Further, despite the language of “love”
and “respect,” t4t does not only refer to the fulfillment of affective needs. In fact, while Infect
Your Friends closes with the narrator’s trans rage ending the world, it opens with her cultivating
the skills necessary to steal and raise hormone-producing pigs, to do “T4T for real. [Provide]
Hormones for the girls” (67). Love and respect turn out to mean committing to the redistribution
of material resources in order to commit oneself to the total well-being of another. This defin-
ition of caring, which solicits us not despite but because of our own and others’ limitations, is
deeply resonant of Margaret Price’s crip gloss of care: “care means moving together and being
limited together” (279).
While Peters insists that Infect Your Friends is motivated by the present desire for more eth-
ical transfeminine community forms, it is striking that enacting t4t “for real” seems to require
the end of the world, an utter reorganization of interpersonal, social, and economic logics. But,
if this is a story also about the status of trans lit, then I’d like to conclude by suggesting that,
while turning to this novella for models of ethical community forms is impractical at best, it
is instructive for thinking about ethical ways of doing the labor of literary criticism. Briefly, in
the second decade of the twenty-first century, small independent presses, journals, and online
platforms that allow authors like Peters to distribute work outside of the press model, are
making something called “trans lit” possible. At the same time, trans literary criticism is in its
fledgling form, and there are many questions about how the field ought to proceed, about what
might constitute the trans literary archive. Or, as Alexander Eastwood has put it, while trans
studies is, we’re told, flourishing, it “has yet to flourish in literary contexts” (593).
For Eastwood, this discrepancy is the product of a methodological mismatch –whereas con-
temporary literary criticisms tend to privilege the reader as the location of meaning-making,
caring for trans people requires a resistance to the trans allegory and a commitment to inter-
pretative contexts in which trans people can determine (or, at least, meaningfully guide) how
we are to be read. If this is a methodological problem, it’s no surprise that Eastwood offers a
methodological solution. He proposes that trans literary critics and trans bookworms of all sorts
read not for identity but for resonance, looking not to excavate trans characters where there may
be none, but instead “trac[ing] how certain problems, ideas, strategies, or aesthetics that structure
contemporary experiences of transsexuality find expression in literary history” (Eastwood 595).
Impatient with the limited trans literary archive, Eastwood prioritizes trans readers and practices
of reading over trans texts.
In light of the problem of trans allegory, Eastwood’s turn to trans reading does more than
grant trans lit crit a vast archive: it also insists on the reality of trans life. Transness, in his
account, is not a sign to be read but rather a position from which to read. But, in making
this turn, Eastwood continues an unremarked on habit of trans literary criticism, insofar as he
turns us away from the archive of trans creative production that is ever-expanding in all tem-
poral directions. Indeed, from its oft-claimed inauguration in Sandy Stone’s “The Empire Strikes
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Back,” trans studies has arguably approached trans representation in general –and text-based
representation in particular –driven by the critical affects of suspicion and shame. For example,
though it is much more than this, Stone’s essay can be read as an apologetic explanation for the
(political) limits of actually existing trans autobiographies, an apology which hopes to bring into
existence new trans genres more adequate to Stone’s radical desires. Nearly two decades later,
Eastwood too narrates his impatience with the trans literary archive, so finds himself returning
to Stone’s foundational question and turning it inside-out: “How can the transsexual speak?”
becomes “how, then, might the transsexual read?” (Stone 164; Eastwood 592). Both are vital
questions, but both also side-step actually existing trans lit: Stone holds out hope for a future
object that will be adequate to her desires while Eastwood develops a practice of reading that
will make potentially any object able to fill the trans desire for history, making nearly any text
“our own” (duCille 33).
Notably, Eastwood, too, presents his argument as enabling a form of care. In particular, he
suggests that reading for resonance “enables strange kinships between readers and texts, kinships
that act as salves” for the melancholic trans reader, like Peters’ protagonist (602). The salve of
resonant reading, then, is offered as a technology of self-care, one that might fill the real, affective
need to see oneself as a viable subject in this world. However, in the hope of fulfilling the emo-
tional needs of the self, resonant reading might actually encourage trans critics to turn away
from the emotional and material needs of a wider trans we composed of authors, texts, presses,
students, and so forth. Of course, I am not arguing that trans lit crit should –or even could –
solely focus on trans-authored work; rather, that eschewing “identity” altogether as a rubric
for determining how the intellectual/emotional resources of academic trans lit crit are to be
distributed, we risk leaving the largely un-or low-paid labor of trans lit’s care almost entirely to
those of us whose labor and living is even more precarious.
My earlier gesture to Ann duCille’s retrospective on black feminist criticism is meant to indi-
cate that these anxieties about literature of “our own” are certainly not peculiar to trans studies;
however, they are unfolding in the present tense and alongside an unprecedented consolidation
of something called trans lit. Given this context, I would like to ask a third question: if “care
means moving together and being limited together,” then what might it mean for trans literary
critics to approach their objects not with suspicion nor impatience, but with critical care?
Understanding t4t as a crip ethics of trans lit crit, in particular, might loosen this requirement
that our objects meet all of our (political, personal, aesthetic) needs; instead, it might prompt us
to consider ourselves in an unsteady, uneven, but nonetheless reciprocal relation. Further, just
as disability theory prompts us to regard the limits of a bodymind in relation to the environ-
ment that may or may not “sustain the shape and function of the body that enters it,” we might
ask, for example, “What do the limitations of this object tell us about the shape of the world
in which it exists?” (Garland-Thomson “Misfits” 594). That is, although we speak intuitively of
the lives of books, as critics we tend to underplay our role in sustaining those lives through our
forms of attention. But literary criticism –“unproductive,” sustaining labor that it is –is, or can
be, a form of care work, both for better and for worse.Texts too require care, both the affect and
the labor; they need, in short, the care work of literary criticism.
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Peters, Torrey. Infect Your Friends and Loved Ones. Self-published, CreateSpace, 2016.
———. “(Trans) Love and Other Scars,” interview by Kai Cheng Thom. Autostraddle, February 20, 2017,
www.autostraddle.com/trans-love-and-other-scars-an-interview-with-torreypeters-author-of-
infect-your-friends-and-loved-ones-369764. Accessed February 12, 2018.
———.“The Autostraddle Interview, Uncut,” by Kai Cheng Thom. Torrey Peters, February 21, 2017, www.
torreypeters.com/2017/02/21/the-autostraddle-interview. Accessed February 12, 2018.
“present, adj. and adv.” OED Online, Oxford University Press, January 2018, www.oed.com/view/Entry/
150679. Accessed February 13, 2018.
Price, Margaret. “The Bodymind Problem and the Possibilities of Pain.” Hypatia vol. 30, no. 1, 2015, pp.
268–284.
Prosser, Jay. Second Skins: The Body Narratives of Transsexuality. Columbia University Press, 1998.
Salah, Trish. “Backlash to the Future: Screening Transsexuality as Fundamentalism.” TOPIA vol. 25, 2011,
pp. 212–222.
Sandahl, Carrie. “Queering the Crip or Cripping the Queer: Intersections of Queer and Crip Identities in
Solo Autobiographical Performance.” GLQ: A Journal of Lesbian and Gay Studies vol. 9, no. 1–2, 2003,
pp.  25–56.
Snorton, C. Riley. Black on Both Sides: A Racial History of Trans Identity. University of Minnesota Press, 2017.
Stone, Sandy. “The Empire Strikes Back: A Posttransexual Manifesto.” Camera Obscura: Feminism, Culture,
and Media Studies vol. 10, no. 3, 1992, 150–176.
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Stryker, Susan.“My Words to Victor Frankenstein above the Village of Chamounix: Performing Transgender
Rage.” GLQ: A Journal of Lesbian and Gay Studies vol. 1, no. 3, 1994, pp. 237–254.
———. “(De)Subjugated Knowledges: An Introduction to Transgender Studies.” In The Transgender Studies
Reader, edited by Susan Stryker and Stephen Whittle. Routledge, 2006, pp. 1–17.
For more at the intersection of disability/transgender, see also:

Adams, Rachel. Sideshow U.S.A: Freaks and the American Cultural Imagination. University of Chicago
Press, 2001.
Barry, Kevin M. “Disabilityqueer: Federal Disability Rights Protection for Transgender People.” Yale
Human Rights and Development Journal vol. 16, no. 1, 2013, pp. 1–50.
Clare, Eli. “Body Shame, Body Pride: Lessons from the Disability Rights Movement,” in The Transgender
Studies Reader 2, edited by Susan Stryker and Aren Aizura. Routledge, 2013, pp. 261–265.
Gorton, R. Nick. “Transgender as Mental Illness: Nosology, Social Justice, and the Tarnished Golden
Mean.” The Transgender Studies Reader 2, edited by Susan Stryker and Aren Z. Aizura. Routledge, 2013,
pp. 644–652.
Mog, Ashley, and Amanda Lock Swarr. “Threads of Commonality in Transgender and Disability Studies.”
Disability Studies Quarterly vol. 28, no. 4, 2008, http://dsqsds.org/article/view/152/152.
Puar, Jasbir. “Bodies with New Organs: Becoming Trans, Becoming Disabled.” Social Text vol. 33, no. 3,
2015, pp. 45–73.
Sears, Clare.“Electric Brilliancy: Cross-dressing Law and Freak Show Displays in Nineteenth-Century San
Francisco.” In The Transgender Studies Reader 2, edited by Susan Stryker and Aren Z. Aizura. Routledge,
2013, pp. 554–564.
Serlin, David. Replaceable You: Engineering the Body in Postwar America. University of Chicago Press, 2004.
West, Issac. Tranforming Citizenships: Transgender Articulations of the Law. New York University Press, 2014.
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4
CHALLENGING
PHONOCENTRISM
Writing signs and bilingual Deaf literatures
Kristen Harmon
What is Deaf literature? How can written literary works be deaf? Many readers of English texts
may never have asked themselves questions like these about reading and writing: how can
written literature –a poem, play, short story, novel, or other creative forms –be Deaf (and
signing)? How can it have been hearing (and speaking) to begin with? Many readers of literature
likely already know about groupings of literature related to identity, history, experience, even
language: Latino/a literature, GLBTQ+ literature, Women’s literature, literatures of the African
diaspora, and so on. Maybe readers and students already know about American Sign Language
(ASL) performances, but those are filmed texts using video and digital technology. Deaf litera-
ture, in print, is something else altogether. Or is it?
Writing and reading, as solitary, “quiet,” activities do not, at first glance, lend themselves to
discussions of audition, language, and hearing status. But like other bilingual or multilingual
literatures, Deaf literature and the literature of sign language peoples –as written by those
who are fluent in a signed language, regardless of hearing status, as in the case of adult chil-
dren of deaf adults (CODAs) –have the potential to make us think twice about the norms and
conventions of English literature and writing.The multiple literacies of bilingual or multilingual
Deaf people are uniquely embodied and intertextual in ways that highlight assumptions about
human languages and expose the phonocentric underpinnings of how we talk about language
and textuality in written literature. Phonocentrism is the assertion that “the primacy of speech
and phonetic writing in language is not a ‘natural’ human attribute, but the result of a metaphys-
ical and historical prejudice” (Bauman, “Listening” para. 1). After all, one of the “foundational
ableist myths of our society [is that] the norm for humans is to speak and hear” (qtd. in Esmail,
Reading Victorian Deafness 4).
Thanks to the increased representation of Deaf, signing, characters in popular culture, media,
and literature, contemporary readers will likely bring to their reading of Deaf literature a more
contextualized and nuanced understanding of deafness in relation to sign language. Many people
understand that some deaf people “speak” sign language; others may know a little more: that
signed languages are a core component of identity and cultural affiliation for many Deaf people
in English-using cultures and nations. In describing deaf, Deaf, and hard of hearing people,
the use of the lowercase in the descriptor, “deaf,” generally refers to only the sensory status of
deafness, and the use of the uppercase, as in Deaf, denotes those who are signers and members
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Kristen Harmon
of the Deaf community, a sociolinguistic community. Deaf writers are necessarily bilingual, at
minimum.
This chapter argues that Deaf literary and creative writing poses a challenge to the
phonocentric norms of English language literature, and indeed, of many Western literatures.
Study of writing strategies from historical and contemporary Deaf bilingual ASL-English authors
show that they have found ways to highlight, challenge, and subvert pervasive phonocentrism.
English literature does not have to be oral/aurally-based; indeed, rather than a constant display
of “hearing loss,” instead, contemporary Deaf writers show the concept of “Deaf gain” –the
flipside of this binary –in action. Deaf gain is the idea that sensory, linguistic, physical, and cog-
nitive differences can have intellectual, creative, and cultural benefits; indeed, such differences
are vital to humanity and human creative endeavors (Bauman and Murray xv).
Deaf and sign language literatures are not simply one thing or another; they are multifaceted,
changeable, and contested. Clearly, the canon of Deaf literature is developed by people who use
sign language; hearing status may vary, but the most common feature is the shared sociocul-
tural linguistic community of sign language speakers. Generally, sign language literatures can be
described as the literary, creative, and verbal arts forms of a particular sign language community.
Currently, there is no firm definition of what constitutes Deaf literature, though in recent years
there has been the emergence of a loose consensus in Deaf Studies that, broadly, deaf litera-
ture is distinct from sign language literary and creative forms; as such, deaf literature consists of
written works by and about deaf people (Donne 660). Sign language literatures, in contrast, are
those linguistically-and culturally-determined verbal arts/non-spoken oral traditions that are
performed and recorded in visual media, as in American Sign Language poetry, number stories,
ABC stories, narratives, and so on; these are examples of what Benjamin Bahan calls “face-to-
face tradition” (Bahan 22). Some scholars, however, use “Deaf literature” –describing bilingual
writers who are also members of the DEAF-WORLD –as an umbrella term for both written
and signed creative works, including verbal arts/oral traditions (Peters 3). Other scholars note
the hybrid nature of many written works by sign language peoples; their written texts incorp-
orate features of signed languages and verbal arts traditions, and as such, “Deaf lit.” occupies a
complex and creative middle ground between signed and written languages (Holcomb 134).
The idea of a literature canon is similarly flexible, but still determined by culturally-determined
parameters. This chapter addresses the written literature of Deaf writers who are fluent in
American Sign Language and who are writing in English. As bilinguals or multilinguals, Deaf
and signing writers incorporate features from both signed and spoken/written languages.
Deafness and hearing loss is not that unusual, despite the often-stereotyped characteriza-
tion of deaf people in visual and print media as being completely isolated or significantly
marginalized. It is estimated that, currently, two to three out of every 1,000 babies are born
with some level of hearing loss, and that overall numbers of deaf and hard of hearing people in
the United States are around 27.7 million (“Quick Statistics about Hearing”). However, most
deaf and hard of hearing people do not sign. Ironically, though, American Sign Language is the
third most studied language in colleges and universities across the United States, coming just
behind Spanish and French (Goldberg, Looney, and Lusin 2). Despite the popularity of ASL for
hearing language students, the number of native and fluent signers within the deaf population
is small; estimates for members of the DEAF-WORLD, the sociocultural community of signers
in the United States, range from 250,000 to 500,000 (Mitchell, Young, Bachleda, & Karchmer
318). The DEAF-WORLD is a gloss, or a loose translation, on the American Sign Language
phrase that means the shared culture, language, knowledge, traditions, networks, and commu-
nity of sign language peoples; because of the focus on relationships between signers who are
spread throughout the United States –and the world –and who can communicate “face to
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Challenging phonocentrism
face” through visual technology, it is not limited to a region (Bahan, Lane, and Hoffmeister,
chapter 1). The DEAF-WORLD is, in written English and in mainstream visual media, often
portrayed as being in contact –and conflict –with its analogue, the HEARING-WORLD.
Signed languages are human languages in their own right; as with spoken languages, signed
languages have their own unique linguistic structure, complete with all of the expected struc-
tural features of human languages: phonology, morphology, grammar, and so on. They are not
manually-coded forms of English or other spoken languages. Emerging as they do from a
community of language users over time, signed languages are specific to their community of
users; there is no single or universal sign language, as such. There is, instead, American Sign
Language (ASL), Langue des Signes Française (LSF), British Sign Language (BSL), Japanese Sign
Language, Kenyan Sign Language, Ukrainian Sign Language, Kolkata Sign Language, among
others. However, there is a limited-lexicon, agreed-upon, pidgin system of signs from different
countries called International Sign (IS), typically used for international meetings of Deaf people,
but IS is not a substitute for a full-fledged sign language.
In many ways, deafness, speech, sign language, and written literature are contact zones; a
helpful starting point for this discussion on deafness and literature is the idea of the “hearing
line,” or what Christopher Krentz calls the “invisible boundary separating deaf and hearing
people” (Krentz, Writing 2). Literature is one of the mechanisms for enforcing or for subverting
the norms of the hearing line; indeed, reading and writing provide a kind of “meeting ground…
between deaf and hearing people, a place where differences may recede and binaries may be
transcended” (Krentz, Writing 16). Rachel Mazique and Julie Minich propose the idea of there
being “literatures of the ‘hearing line,’ ” or what as the multiple texts and representations that
demarcate and reinforce the hearing line (Mazique, personal correspondence). Many of the
works discussed in this chapter are, in effect, “literatures of the hearing line.”
“The hearing line” in literature

Before the 1860s in the United States, deafness was most commonly understood as an “affliction,”
and many, including Thomas Hopkins Gallaudet, an early and deeply influential advocate for
Deaf education in America, learned signs for the purposes of bringing Christianity and the
gospel to “isolated” Deaf people (Baynton 15, 18). After the end of the Civil War in the 1860s,
however, a shift towards the development of a national identity in the face of resistance towards
“foreignness” and fears related to immigration led to the rise of assimilation through means of
oralism, or the exclusive use of spoken language in deaf education, as opposed to manualism,
or the use of signs (Baynton 16, 29). From the 1880s onwards, an active campaign to suppress
sign language in favor of oralism was perpetuated through linguistic Darwinism and unfounded
eugenic fears of a “deaf variety of the human race” (despite the fact that the overwhelming
percentage of deaf people are born to hearing people) (Baynton 31, 37, 40). At the turn of the
century, in 1899, sign language was denigrated as being subhuman and animalistic: “these signs
can no more be called a language than the different movements of a dog’s tail and ears which
indicate his feelings” (Baynton 53).
Written as angels, outcasts, brutes, or otherwise existential and allegorical figures, deaf
characters in nineteenth-and twentieth-century Western literature –as written by non-deaf,
non-signing, authors –often marginalized or idealized deafness in ways that revealed cultural
attitudes more than actual deaf lives. “Everywhere, even in Paris, in the most advanced civiliza-
tion,” the narrator of French writer Alfred de Musset’s story, “Pierre and Camille” (1844) tells
us, “deaf mutes were looked upon as a kind of being separate from the rest of humanity, stamped
with the seal of the wrath of Providence” (Batson and Bergman 13). Ranging from idealized,
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Kristen Harmon
beautiful, silent virgins [de Musset’s Camille, Wilkie Collins’s Madonna in Hide and Seek (1854),
Charles Dickens’s Sophy in Doctor Marigold (1865)] to the brutish yet noble savage Gerasim in
Ivan Turgenev’s short story, “MuMu” (1854), to the highly allegorical treatment of deafness in
“Talking Horse,” written by Bernard Malamud (1973), to the extreme naivete of Eudora Welty’s
deaf couple who have missed their train in “The Key” (1941), canonical and popular Western
literature contains a fair number of representations of deafness. As with disability, once one
starts looking, disability –and by extension here, deafness –is more present and prevalent than
one would assume (Garland-Thomson para. 7).Yet often, these portrayals of deafness are highly
symbolic, stylized, idealized, or dehumanizing. In these works of literature, when juxtaposed
with hearing and speaking protagonists and characters, deaf and signing people often are shown
to be deficient, or lacking, in comparison. Such a persistent portrayal is an indication of what
is known as audism, or the “hearing way of dominating, restructuring, and exercising authority
over the deaf community…[in ways that also involve] the historical pathologization of the
deaf body and the normalizing practices of institutions designed to ‘help restore the deaf to
humanity’ ” (qtd. in Bauman, “Listening”).
For Deaf writers and poets, writing became a strategy to assert the importance of signed
languages while also acknowledging and countering assumptions about what deaf writers and
poets could or couldn’t do in comparison with their hearing peers. Early attempts at creative,
literary works generally took the form of conventional verse poetry or nonfiction autobio-
graphical pieces. Nineteenth-century deaf poets, keenly aware of the cultural link between
orality and poetry, especially in relation to formal features such as rhyme and meter, tried to
acknowledge cultural beliefs about the primacy of sound for poetry while also writing in ways
that demonstrated their desire to “sever hearing ability from poetic ability” (Esmail, “Perchance
My Hand May Touch the Lyre” 509). With the exception of Deaf writer John Burnet’s short
story, “The Orphan Mute” (1835), most early deaf creative writers who published their work
were concerned with political purposes or with readership and their choice of the nonfiction
and poetic genres reflected that. As Christopher Krentz puts it, the “written word” had a
complicated role for these early deaf Americans; “[w]‌r iting served as a bridge between deaf and
hearing people, giving deaf Americans a means to demonstrate their reason and humanity to the
hearing majority” (A Mighty Change xii).
Compelled to defend deaf writers and poets, Gallaudet College president Edward Miner
Gallaudet, son of one of the two co-founders of the American School for the Deaf (1817),
Thomas Hopkins Gallaudet, wrote in Harper’s in 1884 that “[i]‌t is no easy matter, if indeed
it be at all possible, for those of us who possess the sense of hearing to place ourselves in the
position of those who dwell for a lifetime in a world of silence…And yet the interesting fact
appears that the deaf, in no inconsiderable numbers, have essayed to mount on the wing of
poetic expression” (87). This assumption about Deaf writers and poets as forever aspirational
but doomed to fail because of the overweening auditory nature of poetry continues on into the
contemporary era; in 2009, DeafBlind poet John Lee Clark wrote that “[t]he Deaf poet is no
oxymoron, but one might think so, given the popular understanding that poetry has sound and
voice at its heart” (1). Clark, like other Deaf poets, relies on other central aspects of poetry: sense
details, imagery, and rhythm, an aspect of language that crosses modality; rhythm can be written,
spoken, signed.
Conventional thinking about the auditory requirements of literary writing was not limited
to poetry; Edna Edith Sayers argues that the dearth of deaf characters and writers is a function
of how literature works: stories are told or narrated through spoken and heard dialogue (1).This
phonocentric underpinning of English literature, in conjunction with the stigma surrounding
disability in general and deafness in particular, meant that deafness in literature tended to follow
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along fairly similar narrative trajectories. As written by hearing, non-signing authors, histor-
ically, deafness was usually the appearance of an anomaly, with deafened ears and a (typically)
“silenced” tongue as stigmatized sites of difference and knowledge production, however sympa-
thetically portrayed. Wilkie Collins’s portrayal of the deaf and non-speaking heroine, Madonna,
in Hide and Seek (1854), is a fair exemplar of this sort of characterization: “[t]‌he keenest obser-
vers, beholding [the young deaf woman, Madonna] as she at present appears, would detect
nothing in her face or figure, her manner or her costume, in the slightest degree suggestive of
impenetrable mystery, or incurable misfortunate. And yet, she happens to the be the only person
in Mr. Blyth’s household…whose ‘case’ is always compassionately designated as ‘a sad one’ ” (48).
If “hearingness” is the assumed nature of a written work, then the mere presence of deafness
and disability is often a disrupting moment in the narrative that then must be addressed, or as a
problem to be solved; as David Mitchell and Sharon Snyder note, “disability serves as an inter-
ruptive force that confronts cultural truisms…disability acts as a metaphor and fleshly example
of the body’s unruly resistance to the cultural desire to ‘enforce normalcy’ ” (48). The predom-
inant concern here with these historical pieces is with the answer to the repeated, implied,
ideological question: What are you if you can’t hear? Can you even exist as a fully human being in
this, the heard world? These questions abounded despite the insistence by Deaf people themselves
that they flourished with sign language. Well-regarded Deaf journalist, poet, and writer Laura
Redden Searing (who often published under her pseudonym, Howard Glydon) wrote, in 1858,
that “[s]igns are the natural language of the mute. Writing may be used in his intercourse with
others, but when conversing with those who are, like himself…you will always find that he
prefers signs to every other mode of intercourse” (Krentz, A Mighty Change xxiii).
Even though so many early representations of deaf people and of sign language were dehu-
manizing and limiting, bilingual Deaf people wanted to read, and thereby see, themselves in
English literature. In 1848, American deaf education publications reviewed the few available
works by deaf authors and poets writing in English (Burnet 179;“Poetry” 14–15). Later, in 1893,
1894, and 1916, discussions of “the deaf in literature,” as published by both deaf and hearing
authors, appeared in American Deaf publications (I.V.J., “The Deaf in Literature” 3; “The Deaf
in Literature” 79–80;Terry 53–55). As noteworthy and rare sightings, these appearances, in print,
of deaf characters were largely celebrated by readers and writers in Deaf community periodicals
(known as “the silent press” or “the Little Paper Family”) except when hearing authors gave
deaf characters subhuman, superhuman, or otherworldly qualities. “In all these stories and
poems [by hearing authors],” writes reviewer I.V.J., in The Silent Worker in 1893, “there is a halo
of sympathy thrown around them –no mute ever appears as a villain” (3).
Later, the same reviewer, I.V.J., wrote in 1899 that “[s]‌uch well known [hearing] writers as
Sir Walter Scott, [Charles] Dickens, Wilkie Collins, Hall Caine, Mrs. E. S. Phelps Ward, and a
few others, have introduced [‘deaf-mute1 heroes and heroines’] into their stories or novels, but
while picturing them with tenderness, and pathos, there has always been something lacking; we
will call it local color for want of a better phrase” (105). The lack of “local color” –or nuance,
complexity, and multidimensionality of deaf characters, language, community, and context is an
old problem in literature.
Concerned about the power of false ideas about deafness and Deaf people in literature, in
1916, Deaf writer and poet Howard L. Terry reported to the National Association of the Deaf
that “there will always be something for this [literary] bureau to look after” and that letters to
protest egregious representations of deaf people in print had been written to all the “leading
magazines” and to famous writers of that era (54). In response, he reports, replies from writers
Jack London and Mary Roberts Rinehart (the “American Agatha Christie”) have “invariably
been…that the deaf themselves should write about the deaf ” (54). Easier said than done, as
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Kristen Harmon
Terry, and contemporary writer and poet John Lee Clark, noted, in relation to the difficulties
of publishing (Clark xiv). Little wonder, then, that so many Deaf readers and writers –then and
now –say that English literature doesn’t feel like us.
Phonocentric norms and the disconstruction of sign language

However, audition does not always have to be the norm even for “hearing” people, and a his-
torical illustration of a national social shift toward audition is revealing of this often unconscious
phonocentric bias for English readers and writers. In the 1930s, American Deaf painter, writer,
and silent film actor Albert Ballin argued that the arrival of sound film, or “Talkies,” would
be short-lived after sound-enthralled viewers realized that spoken dialogue slowed down the
pace of a film; hearing people would soon tire, he predicted, of the “incessant clatter” (76).
Prior to that time, both hearing and deaf people had flocked to the theaters for “silent films”;
in addition to the use of short and readable subtitles, reliance on gesture, pantomime, and
telling facial expressions made this medium appealing. Ballin wrote that watching a good silent
film lingered in the memory like a good book: it did not “scream” (76). Similarly, Rebecca
Sanchez has argued, silent films, and one in particular, Charlie Chaplin’s The Great Dictator
(1940), “associated the fetishization of verbal speech within the context of fascist propaganda
with the film industry’s movement from silent to spoken dialogue pictures…at the center of the
film is a consideration of the implications of the assumption of verbal language’s superiority as
a means of expression” (155–156).
Extrapolating from and extending Jacques Derrida’s work on phonocentrism, Deaf Studies
scholar H.-Dirksen Bauman argues that the crucial and arbitrary alignment of voice and being or
power has led to a “ ‘disconstruction of [sign] language,’ in which the category has been formed
within a fundamental lack of awareness of the full human potential for language” (“Listening”).
Bauman writes, “signed languages are not aberrations, nor mere supplements to speech; they
take the form of one human language modality among others, equal to speech. In short, to sign
is human” (emphasis in original) (“On the Disconstruction” 127–128). The situation for Deaf
writers shifted in the 1960s, with the rather late “discovery” by a hearing linguist that American
Sign Language was indeed a full-fledged human language and not just “the signs,” or a manu-
ally coded system; “deaf people began organizing as a social movement, challenging the idea
that they were impaired and defining themselves increasingly as a linguistic minority, using the
model of ethnicity” (Shakespeare and Watson 548).
Even so, the linking of audition and voice with power and being meant that even before pen
hit paper, Deaf creative arts in English were already laden with the baggage of over 130 years of
resolutions, proclamations, and recommendations. In 1880, educators of the deaf converged in
Milan to review and discuss methods of instruction; attendees argued about which was a more
effective method of instruction and learning: speech alone or “manualism,” or sign language. At
this conference, the following resolution was adopted, a resolution that reverberates even to this
day: “The Convention, considering the incontestable superiority of speech over signs, (1) for
restoring deaf-mutes to social life, (2) for giving them greater facility of language, declares that
the method of articulation should have the preference over that of signs in the instruction and
education of the deaf and dumb” (qtd. in Gallaudet, “The Milan Convention” 5–6). Shortly
after, in 1884, Alexander Graham Bell wrote in Memoir upon the Formation of a Deaf Variety of
the Human Race, that “deaf-mutes think in the gesture language, and English is apt to remain
a foreign tongue. They can communicate with hearing persons by writing, but they often
write in broken English, as a foreigner would speak. They think in gestures, and often trans-
late into written English with the idioms of the sign language” (42). Bell wrote this “memoir”
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to discourage intermarriage between Deaf individuals even though the great majority (over
90 percent) are born to hearing parents, not deaf parents. Then much later, after the passage
of the Public Law 94–142, also known as the Individuals with Disabilities Education Act, in
1975, many deaf and hard of hearing children who would have otherwise attended residential
or day programs for the deaf, where –by and large –sign language was used for instruction and
socialization, ended up going to “mainstreaming” schools where spoken language was the norm.
Breaking English: reclaiming and remaking literature

Despite the fact that Deaf writers are necessarily bilingual and demonstrate many characteristics
of bilinguals in their writing for different purposes, Deaf writing was then and is still sometimes
described as broken English. Deaf novelist Douglas Bullard, believed to be the first writer of a
“Deaf culture” novel, Islay (1986), wrote, “Us deaf communicate by the eye of course, and this
creates a thought process wildly different than that processed by the ear. What looks right to
the ear does not necessarily look right to the eye. Many deaf people process language along the
lines of ASL, and when they write, the syntax reflects this thought process” (“Deaf English” 12).
Resisting this characterization, some contemporary Deaf creative writers are experimenting
with textual, linguistic, syntactic, and rhetorical strategies as a way of conveying and writing
a Deaf life; “Deaf English,” in turn, becomes an innovative and creative interrogation of both
English and English literature.
Cynthia Peters calls Bullard’s Islay the first book-length piece of creative writing to focus
on Deaf culture and bilingualism (122). In this novel, an episodic tale of an attempt to estab-
lish a separatist Deaf state, Bullard presents a glossed version of ASL that is not quite ASL, nor
is it English. Bullard initially begins with code-switching between Standard English and ASL
glossing, and slowly moves toward more use of ASL gloss and “TTY talk” as the reader learns
how to “read” the new form. TTY “talk” is the patois that emerged for users of teletypewriters.
In doing so, Bullard outlines a new possible reality in print. Lyson Sulla, the Deaf protagonist,
has a dream of a Deaf state within the Union. He tells his wife,
You know that Laurent Clerc [a real-life French Deaf teacher who traveled to America
with Thomas Hopkins Gallaudet to establish America’s first school for the deaf
in 1817] had same dream! Himself greatest deaf in history, started Golden Age for deaf there,
France. Then brought sign here America; almost started Golden Age for us deaf, but hearing
oralism frustrated him, broke up deaf cooperation and almost destroyed Sign Language.That why
Clerc liked idea for deaf gathering into one state where deaf itself normal!
(Bullard, Islay 6–7; italics in original)
Tellingly, as part of the back story, two competing histories of the island, Islay, are presented.The
first is its national (American) history as “an unwanted orphan shifted back and forth across the
River American, its parentage and legitimacy denied” until a Civil War veteran claimed it for
the Union (Bullard, Islay 5). The strategy of inserting “contesting narratives,” a “re-writing” of
history, is an important part of the process of discursive resistance (Ashcroft 102). Islay has been
feted as the “first ASL novel,” and one that plays “the conventions of mainstream literature off
those [of] vernacular ASL storytelling” (Peters 140). Through Bullard’s text a distinctly bilingual
Deaf literature becomes possible.
While Bullard’s Islay follows the structural conventions of the novel, genre doesn’t always
translate in the intersection between English and ASL; sign language “face-to-face” literatures
contain many genres that don’t readily show up in English, such as number stories, ABC stories,
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Kristen Harmon
“visual vernacular” or VV storytelling, and so on. And visual vernacular is already itself a hybrid
form, combining poetry and narrative techniques with heavy use of depiction and classifiers.
To speak or use a certain language “means above all to assume a culture, to support the weight
of a civilization” (Fanon 17–18). In such a setting, the notion of a “Deaf literature” in English
is interestingly complicated. In addition to what is already noted here about hearing status, lan-
guage use, and Deaf identity, do conventions of English literary craft matter in the same way?
After all, notions of what constitutes “literary,” “art,” and “universal” are constructed values,
embedded within a particular ideological culture. Can other kinds of less overtly “literary”
expressions of Deaf worldviews and experiences qualify, such as personal narratives, a predom-
inant and necessary genre in many Deaf publications? What about those stories or poems that
are transliterated exactly as signed? Are these literary? Who are these being written for? About
who? By whom?
Vexing the print page

The Deaf writer’s relationship with the printed page has always been vexed. Deaf writer and
journalist Tom Willard, in a satirical nonfiction piece from 1993, “How to Write Like a Hearing
Reporter,” skewers common and stereotyped portrayals of Deaf people in print media. In an
observation of how “hearing reporters write about deaf people,” Willard proposes this set of
discursive co-constructions based on his reading history in English:
Let’s start with the headline. There are two words that must appear in every headline.
One is “silence” (or “silent”). For example:
Sounds of Silence
Silent Courage
The Silent World of Joe Jordan
The other word is “signs”:
Signs of Confusion
A Good Sign
Theater Signs
If you want to go all the way, you can combine the two:
Signs of Silence.
(Harmon and Nelson 38; boldface in original)
“Another tip,”Willard writes, “when writing about deaf people, it is permissible to refer to them
by their first name throughout the article, as if they were children. One last tip…Don’t [write
about deaf people] often. Your community may be filled with interesting deaf people doing
newsworthy things, but who cares? Once a year is enough” (Harmon and Nelson 39).
Deaf poet and writer Abiola Haroun’s 2012 alliterative shape poem, “DEAF- INISM,”
also suggests that readings of deafness are already overdetermined, even overwrought with
pathologized, phonocentric, narratives:
Open dictionary:
Dumb
Disabled
Destitute
Deprived
Dunce
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Say what?
Flip page:
Docile
Dependent
Dysfunctional
Dull
Dweeb
Close Dictionary.
Perform self-check.
Ha! (Harmon and Nelson 132)
Haroun’s rereading of the connotations surrounding the word “deaf,” and assertion of inde-
pendence from these, quite literally reverses the reading process; if the separation of the “deaf
synonyms” on the page are meant to resemble the pages of a book, then the reader is made to
read backwards. The back of the page is read before the front of the page.
Deaf writing –and reading –is never simply just that; production and reception is intim-
ately tied up with the politics of language, cultural capital, and identity. Little wonder, then,
that over time, Deaf writers like Bullard began to see Standard English and the conventions of
written literature as being less than satisfactory for their purposes. Skilled Deaf writers often
find themselves patronized and the target of exceptionalism. Even now, when a Deaf person
writes, with ease and flair in English, she or he is conscious of the fact that the writing itself will
garner attention largely or partially based upon the writer’s hearing status. As Deaf writer and
blogger Allison Polk wrote in a humorous piece advocating against the overuse of videophones,
“But you know what? I’m a freakin’ good typist. Me know spelling and big words and how to
use commas, yes, me good. So to hell with it” (“Top 5 Reasons to Hate Vping” para. 5). A lit-
eral reading of Polk’s commentary might consider this an intentional use of “bad English” in a
reflection of the alternately disarming and forthright quality of contemporary bloggers. Others
would consider this an innovative use of transliteration and an interesting comment upon the
politics of English use when a visual alternative is available. Another possible interpretation is
that it is simply a funny and Deaf-centered observation on the social awkwardness that the tech-
nology of constant visual contact –always being “on” and visible –entails. Still others would
question or at least consider Polk’s deliberate decision to write contact or pidgin English when
she is clearly highly skilled in written English. When a bilingual Deaf writer produces a text in
English that requires cultural and linguistic knowledge from a different language, this presents
the outlines of a possible and radical counter-discursive “theory” of a particularly Deaf, and
bilingual, literature.
Theory and praxis of writing ASL in English literature

How might American Sign Language infuse English literature? As a reflection of the lived
experiences of bilinguals or multilinguals, Deaf literature in English often comes up against
the limits of translation and challenges with encoding of signs on the page. Some Deaf writers
have argued that writing should feel as smooth as possible to the reader of English, regardless
of hearing and language status. Some Deaf readers have also noted that the need to explain or
“translate” back and forth while reading can be distracting (Harmon, “Writing Deaf ” 205). In
the latter case, is it possible in a theory of Deaf literature to have writing that simply swaps out
hearing characters with Deaf lives as the defining characteristic, presented through writing that
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Kristen Harmon
is otherwise indistinguishable from writing by hearing authors, even complete with spoken
language dialogue tags?
A conventionalized presentation does have the effect of “normalizing” Deaf characters
(though the norm is still potentially still a phonocentric one). Readers are not jarred into a rec-
ognition that these characters are DEAF and that they use a different language; writers of these
kinds of pieces argue that these are simply human lives, and the reading of these lives should
be as smoothly presented as possible; the reader (presumed hearing) is invited gently into these
worlds and so becomes intimately involved in ways that might not be possible in the pieces
that insist upon separatism, or at the very least, an assertion of independence. These and other
questions go to the heart of what it means to write English while deaf.
ASL includes fingerspelling, a 1:1 manual representation of each letter in the English
language alphabet, and fingerspelling is, in fact, some of the few fully borrowed features
from English text in ASL. However, the situation is different with signs and sign phrases.
In English, quotations of signs are always less than translated; there really is no satisfactory
way to translate, transcribe, or even transliterate fluent sign language –a visual, kinesthetic/
tactile, depictive, highly compressed, and spatial language –into a linear coding system based
upon spoken languages and audition. Even the use of English glosses on sign language, such
as DEAF-WORLD, necessarily removes grammatical and depictive elements shown in the
face, hands, and body. There is currently a movement toward Sign Writing, or a separate
writing system, si5s, but as with written English, sign writers and readers need to know the
language being transliterated into visual, textual, symbols. As of now, the numbers of “sign
writers” and si5s writers is small and still does not yet manage to convey the richness of sign
language.
On her thoughts about writing, Deaf writer and English teacher Sara Stallard uses a loose
English gloss, or translation, to convey her ideas:
Know how when chat with other writers deaf same me, discuss how put down way
of communicating, like “she said” or “she signed.” Feel awkward to put ASL in English
frame. Both language very different. Translate ASL in English always hard, take ASL
hand, squeeze, drip out left only idea, finish, idea fluff into English, end up lose active
expression its ASL. (220)
Deaf writers use a variety of typographical, syntactic, and other techniques to convey the insep-
arability of Deaf identity, life, and language. The result is to make Deaf lit. feel strange or for-
eign for a hearing reader used to audition-oriented norms, but “home” for a Deaf reader. Deaf
English is shaped by its interactions with the “hearing line” and with Standard English, as
written and spoken.
Taken as a whole, contemporary Deaf writers are experimenting with a number of syntactic
devices to better convey the seamlessness of ASL in a Deaf life. Many dispense with quotation
marks altogether, preferring instead to present ASL as a non-spoken language by means of
aligning closer to thought through the use of italics, dashes to set off each line of ASL dialogue,
the use of lowercase and other stylistic, typographical, or punctuation features. Writers like
Allison Polk intentionally use both code-switching and typographical features to emphasize
ASL, as dialogue in an otherwise narrated scenario, in English, but the fact of Deaf lives is never
explained or addressed; they simply are. In “Dandelion” (2012), Polk’s protagonist talks with her
child, also Deaf: “WRONG-WRONG? SAD YOU?” (294). Code-switching, or the alternation
of two different languages, is a common feature in contemporary fiction by bilingual or multi-
cultural hearing writers.
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English language glosses from ASL is another common strategy. Poet, writer, and publisher
Raymond Luczak’s “Poster Child” (2012) is told solely as a vernacular transcription through
gloss for both sign and fingerspelling, and the glossing of ASL reinforces the theme of this flash
fiction in dialogue form:
Me-accused kidnapping? What-for-for?…

All-r ight, all-r ight. Me-tell-you explain again two-days-ago. Me-work principal
office same-same when someone-walk-up-to-me girl short-cute-cute, age six, maybe
eight. Saw her around before, but name blank-mind that time. No one in office, just-
the-two-of-us. R-e-c-e-s-s time, you-know?
Ask-her, “Help  need?”
Ask-me, “Need kid you-need?”
“Have kids finish. Why?”
“Mom-Dad don’t-want.”
Mind-blocked. Girl herself young. “Unh –  why?”
“Me-sit home watch open-lips-like-clown-stupid at me, me wish in school already.”
“Sorry. Maybe parents learn signs will.”
“They-don’t-care.”
“Dorm supervisor who?”
“Doris-Davies.”
“Discuss two-of-us will, figure-out do-do. Go play.”
Her-gone, mind-blocked still. Couldn’t focus work. Give-up, search Doris-Davies,
not there, came back office, continue working. Mind-obsessed girl still, but continued
working. Found Doris-Davies dorm; found her upset. Girl disappeared-from-surface.
Everyone looked-looked. That all information me-have girl.
Me-take her? Silly you. Of-course not. Afford take-care kids can’t.
W-h-a-t?
Me-take her not. Understand?
My house? No way. Go-there can’t. My house, not yours.
That poster up-there smart. Pretty. Awful, awful gone. Wish instant adopt could.
Then safe for sure.You-know? (95)
Only through ASL is the Deaf child recognized, owned, brought up from below the “surface.”
Here, the use of ASL is inseparable from the plight of the missing, overlooked child. The horror
of this story is only possible in ASL: parents who can’t be bothered to learn how to communi-
cate with their deaf child, effectively disowned and never safe.
Other Deaf writers and poets incorporate ASL sign gloss, but use these in such a way as to
reveal a Deaf sensibility rather than focusing on the jarring quality of such direct, and yet still
limited, transliterations. Deaf writer and blogger Joseph Santini, for example, uses sign gloss in
an innovative way in his short story, “Lytopedia” (2012), a tale with post-apocalyptic overtones,
about persecution of ASL users and Deaf families. All ASL dialogue is conveyed in italics, with
commas punctuating phrases; name signs are glossed, in lowercase, with no spacing between
the words. In this story, the protagonist describes her sleeping mother and sister, resting in the
aftermath of a chase: “handovermouth and brushedcheek curled cat-like near the meeting roots of
a red-barked tree” (Santini 265). This use of italics and near-English glossing has the effect of
bringing the narration closer to the protagonist’s thoughts.
Interlanguage, a common term in the teaching of English as a second language, provides a
productive perspective on Deaf writing; fusing together linguistic elements or structures of two
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Kristen Harmon
languages can be read as a sign that the writer is making an English as a Second Language “error”
in the text, but some writers use these seemingly ESL issues as a way to convey both “voice” and
character. In “Holding Up” (2012), Deaf writer Pamela Wright incorporates both ASL glossing,
though mostly translated, some ASL syntax, and “TTY talk” (TTY is an abbreviation for “text
telephone for the deaf,” a common mode of long-distance communication well before text
messaging and pagers). In one such conversation with the young protagonist, who is pregnant
and unsure if she should keep the baby, Wright uses interlanguage for her interlocutor in order
to convey his writerly “voice” and his perspective on her situation and what she “should do”: “I
saw you over lynns house you look mad you go home drive past me you not say hi to me that
is ok i not mad at you lynn told me sara talk about rumor with jim v and billy i know you nice
girl i not believe jim v and billy they make up story i get so mad!!!!!!” (178). Anyone who has
ever sent a text message will be intimately familiar with some of the conventions of spelling and
capitalization in “TTY talk,” but some of the syntax echoes ASL syntax.
“Syntactic fusion” is closer to what is happening with the ASL dialogue in Wright’s “Holding
Up”: the protagonist tells her friend about her embarrassment, and her friend replies, “ ‘So! So!
Give them talk! Let them give your name shine! Baby will come!’ Her eyes shone with glee.
‘Baby will beautiful!’ ” (Wright 175). Here, syntactic fusion gives the reader a sense of the ver-
nacular being used. By inserting using ASL glosses, code-switching, vernacular transcriptions,
and syntactic fusion, these writers are opening up a gap between the Deaf writer and the
presumed hearing reader.This gap is important for recognizing and subverting the phonocentric
norms of literature and writing.
Deaf writers are also “re-writing” canonical works, and in doing so, are “talking back” to
the ideological constructs that frame or exclude differences of various kinds. Both playwright
Gilbert Eastman and ASL performance artist Rosa Lee Timm have chosen George Bernard
Shaw’s “Pygmalion” (1913) as the object of their protest against the utter “Englishness” of this
piece. “Pygmalion: A Romance in Five Acts” is one of George Bernard Shaw’s most popular
plays; it is the story of two upper-crust bachelor linguists who decide to take on a penniless
young woman who speaks with what they see as a “dreadful” Cockney accent.They train her in
proper speech and manners, and after some time, she is able to “pass” for upper class. In Gilbert
Eastman’s retelling, the play “Sign Me Alice,” the “experimental” and implied brutality of such
an exercise are emphasized. Alice, the protagonist, is fluent in ASL, and Dr. Zeno, the stand-in
for the Henry Higgins character, trains her in “U.S.E.” or “Using Signed English,” a satirical riff
on Signing Exact English. Alice, at the pivotal moment, realizes, “In my heart, Sign real mine…
Yes, I sign English to you, but I feel more comfortable with my Sign. Nothing can change
me…U.S.E. has nothing to do with being a lady. A lady can use sign” (88–89).
Timm presents her re-writing through a humorous lens in a comedic performance; in “My
Deaf Lady,” her Henry Higgins is fully fluent in ASL and is shocked and appalled by his protégé’s
unclear and stumbling use of Signed English, complete with initialized signs. After a humorous
time-lapse of their training, the Henry Higgins figure asks the Eliza Doolittle stand-in, “But just
try to imagine yourself a fluent ASL user. Imagine being able to express all of your thoughts in
a beautiful language with signs for which there is no ASL equivalent” (Timm). Such re-writing
is a particularly powerful act, for only by seizing the text and inserting oneself into the hege-
monic narrative can one deconstruct binaries concerning power, language, place, and culture.To
write and read the lives of bilingual Deaf people on the printed page is an act of translation, of
embodied literacies in motion: always shifting, conditional, and negotiated.
By attending to how language is conveyed –and the ways that norms, conventions, and
expectations restrict possibilities –writers and readers, regardless of hearing status, can take a
lesson from Deaf writers. Over the last 175 years, Deaf writers have written with and against the
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grain of Standard English; their writing reveals a range of textual and linguistic strategies, and
taken as a whole, these works suggest an engagement with, a laying bare of, and a resistance to
the ideology of phonocentric privileging norms.
Note
1 In nineteenth-century publications, the term “deaf and dumb,” and then “deaf mute,” was used to
describe deaf and signing non-speakers. “Mute” has fallen out of widespread use as more Deaf people
have argued that they “speak” sign language.
Works cited
Ashcroft, Bill. Post-colonial Transformation. New York: Routledge, 2001.
Bahan, Benjamin. “Face-to-Face Tradition in the American Deaf Community: Dynamics of the Teller, the
Tale, and the Audience.” In Signing the Body Poetic: Essays on American Sign Language Literature. Eds. H.
Dirksen Bauman, Jennifer L. Nelson, and Heidi M. Rose. Berkeley, CA: University of California Press,
2006,  21–50.
Bahan, Benjamin, Harlan Lane, and Robert Hoffmeister. A Journey into the Deaf World. San Diego,
CA: DawnSign Press, 1996.
Ballin, Albert. The Deaf Mute Howls. Introduction by Douglas C. Baynton. Washington, D.C.: Gallaudet
Batson,Trent, and Eugene Bergman. Angels and Outcasts: An Anthology of Deaf Characters in Literature. 3rd ed.
Washington, D.C.: Gallaudet University Press, 1985.
Bauman, H-Dirksen. “Listening to Phonocentrism with Deaf Eyes: Derrida’s Mute Philosophy of (Sign)
Language.” Philosophy of Disability 9.1 (2008).
———. “On the Disconstruction of (Sign) Language in the Western Tradition: A Deaf Reading of Plato’s
Cratylus.” In OpenYour Eyes: Deaf Studies Talking. Ed. H-Dirksen Bauman. Minneapolis, MN: University
of Minnesota Press, 2008, 127–145.
Bauman, H-Dirksen, and Joseph Murray. Deaf Gain: Raising the Stakes for Humanity. St. Paul, MN: University
of Minnesota Press, 2014.
Baynton, Douglas C. Forbidden Signs: American Culture and the Campaign against Sign Language.
Chicago: University of Chicago Press, 1996.
Bell, Alexander Graham. Memoir upon the Formation of a Deaf Variety of the Human Race. Washington,
D.C.: National Academy of Sciences, 1884.
Bullard, Douglas. Islay: A Novel. Silver Spring, MD: T.J. Publishers, 1986.
———. “Deaf English.” Clerc Scar 5.6 (2009). Online.
Burnet, John R. “Education of the Deaf and Dumb in New Jersey.” American Annals of the Deaf and Dumb
1.3 (April 1848): 177–181.
Clark, John Lee. “Editor’s Note.” Deaf American Poetry. Washington, D.C.: Gallaudet University Press, 2009.
Collins, Wilkie. Hide and Seek. Ed. Catherine Peters. Oxford: Oxford University Press, 1993.
Donne, Vicki. “Deaf Characters in Literature.” In The SAGE Deaf Studies Encyclopedia. Eds. Genie Gertz
and Patrick Boudrealt. Thousand Oaks, CA: SAGE Publications, 2016, 660–663.
Eastman, Gilbert. Two Deaf Plays: Sign Me Alice & Laurent Clerc: A Profile. San Diego, CA: Dawn Sign
Press, 1974.
Esmail, Jennifer. “‘Perchance My Hand May Touch the Lyre’: Orality and Textuality in Nineteenth-
Century Deaf Poetry.” Victorian Poetry 49.4 (Dec. 2011): 509–534.
———. Reading Victorian Deafness: Signs and Sounds of Victorian Literature and Culture. Athens, OH: Ohio
Fanon, Franz. Black Skin,White Masks. Transl. Charles Lam Markmann. New York: Grove Press, 1967.
Gallaudet, Edward Miner.“The Milan Convention.” American Annals of the Deaf and Dumb 26.1 (1881): 1–16.
———. “Poetry of the Deaf.” Reprint of original Harper’s Magazine March 1884 in American Annals of
the Deaf 29 (July 1884): 200–222. In Education of Deaf Children: Evidence of Edward Miner Gallaudet and
Alexander Graham Bell. Ed. Joseph C. Gordon. Washington, D.C.: Volta Bureau, 1892, 87–93.
Garland-Thomson, Rosemarie. “Becoming Disabled.” The New York Times, Aug. 19, 2016, Sunday Review.
Online.
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Goldberg, David, Dennis Looney, and Natalia Lusin. “Enrollments in Languages Other Than English in
United States Institutions of Higher Education, Fall 2013.” Modern Language Association. Feb. 2015.
https://apps.mla.org/pdf/2013_enrollment_survey.pdf.
Harmon, Kristen. “Writing Deaf: Textualizing Deaf Literature.” Sign Language Studies 7.2 (Winter
2007): 200–207.
Harmon, Kristen, and Jennifer Nelson. Deaf American Prose: 1980–2010. Washington, D.C.: Gallaudet
Haroun, Abiola. “DEAF-inism.” In Deaf American Prose: 1980–2010. Eds. Kristen Harmon and Jennifer
Nelson. Washington, D.C.: Gallaudet University Press, 2012, 132.
Holcomb, Thomas K. Introduction to American Deaf Culture. New York: Oxford University Press, 2012.
I.V.J. “The Deaf in Literature.” The Silent Worker 6.4 (Dec. 1893): 3.
———. “The Deaf Girl Next Door, or Marjory’s Life Work, by Helen Marion Burnside.” The Silent Worker
11.7 (1899): 105.
Krentz, Christopher. A Mighty Change: An Anthology of Deaf American Writing: 1816–1864. Washington,
D.C.: Gallaudet University Press, 2000.
———. Writing Deafness: The Hearing Line in Nineteenth- Century American Literature. Chapel Hill,
NC: University of North Carolina Press, 2007.
Luczak, Raymond. “Poster Child (Told in American Sign Language Gloss).” Deaf American Prose: 1980–
2010. Eds. Kristen Harmon and Jennifer Nelson. Washington, D.C.: Gallaudet University Press,
2012,  95–97.
Mazique, Rachel. Personal correspondence, Dec. 18, 2017.
Mitchell, David T., and Sharon L. Snyder. Narrative Prosthesis: Disability and the Dependencies of Discourse. Ann
Arbor, MI: University of Michigan Press, 2000.
Mitchell, Ross, Travas Young, Bellamie Bachleda, and Michael Karchmer. “How Many People Use ASL in
the United States? Why Estimates Need Updating.” Sign Language Studies 6.3 (2006): 306–335.
National Institute on Deafness and Other Communication Disorders. National Institutes of Health.
“Quick Statistics about Hearing.” U.S. Department of Health and Human Services. Dec. 15, 2016.
www.nidcd.nih.gov/health/statistics/quick-statistics-hearing.
Peters, Cynthia. Deaf American Literature: From Carnival to the Canon.Washington, D.C.: Gallaudet University
Press, 2000.
Polk, Allison. “Top 5 Reasons to Hate vPing.” Feb. 18, 2009. Blog. https://queenalpo.typepad.com/.
———. “Dandelion.” Deaf American Prose: 1980–2010. Eds. Kristen Harmon and Jennifer Nelson.
Washington, D.C.: Gallaudet University Press, 2012, 293–300.
Sanchez, Rebecca. “Rejecting the Talkies: Charlie Chaplin’s Language Politics and the Future of Deaf
Studies in the Humanities.” In Innovations in Deaf Studies: The Role of Deaf Scholars. Eds. Annelies
Kusters, Maartje DeMeulder, and Dai O’Brien. Oxford: Oxford University Press, 2017, 151–166.
Santini, Joseph. “Lytopedia.” Deaf American Prose: 1980–2010. Eds. Kristen Harmon and Jennifer Nelson.
Washington, D.C.: Gallaudet University Press, 2012, 265–276.
Sayers, Edna Edith. Outcasts and Angels: The New Anthology of Deaf Characters in Literature. Washington,
D.C.: Gallaudet University Press, 2012.
Shakespeare, Tom, and Nick Watson. “Making the Difference: Disability, Politics, and Recognition.” In
The Handbook of Disability Studies. Eds. Gary L. Albrecht, Katherine D. Seelman, and Michael Bury.
Thousand Oaks, CA: Sage Publications, 2001, 546–564.
Stallard, Sara. “What That ASL Dialect?” Deaf American Prose: 1980–2010. Eds. Kristen Harmon and
Jennifer Nelson. Washington, D.C.: Gallaudet University Press, 2012, 220–223.
Terry, Howard L. “Report of the Literary Bureau.” Proceedings of the Eleventh (Special) Convention of the
National Association of the Deaf. Kansas City, MO: Walkenhorst Printing Co., 1916.
“The Deaf in Literature.” In American Annals of the Deaf and Dumb 39 (1894): 79–80.
“The Poetry of the Deaf and Dumb.” American Annals of the Deaf and Dumb. Reprint of vol. 1 (1848) in
Supplement to the American Annals of the Deaf and Dumb 23.3 (1878): 14–15.
Timm, Rosa Lee. “My Deaf Lady.” The Rosa Lee Show. Oct. 14, 2006. Video. www.youtube.com/
watch?v=OrDMkmYdnlQ.
Willard, Tom. “How to Write Like a Hearing Reporter.” In Deaf American Prose: 1980–2010. Eds. Kristen
Harmon and Jennifer Nelson. Washington, D.C.: Gallaudet University Press 2012, 51–52.
Wright, Pamela. “Holding Up.” Deaf American Prose: 1980–2010. Eds. Kristen Harmon and Jennifer
Nelson. Washington, D.C.: Gallaudet University Press, 2012, 171–181.
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5
“HERE THERE BE MONSTERS”
Mapping novel representations of the relationship
between disability and monstrosity in recent
graphic narratives and comic books
Chris Foss
From the Golden Age of Comic Books (with its monstrous supervillains such as the Joker and
Red Skull) to our contemporary moment (in between the August 2019 publication of Marvel
Monsters #1 and the 2020 release of the new animated web television series Monsters at Work),
it is impossible to imagine sketching the history of English-language comics without recourse
to a comprehensive consideration of monstrosity. Monsters, of course, have maintained a ubi-
quitous presence within the human imagination and its literary expressions since ancient times.
For some, there is a visceral thrill, even genuine fun, in the sense of danger that accompanies a
potential encounter with the monstrous; for others, however, the terror usually associated with
these figures and the evil they stereotypically represent is decidedly traumatic and merits horror,
if not hatred.
Unfortunately, there is a long-standing disturbing history of pejorative associations of dis-
ability with monstrosity. Counternarratives have, of course, persisted all along as sites of resist-
ance to traditional templates and their problematic couplings of monstrosity and disability, but
arguably such revisionist takes have become increasingly prevalent and powerful since the last
part of the twentieth century as disability rights activism and disability studies scholarship have
encouraged more progressive understandings of disability, including reimagining its association
with the monstrous. Given the fundamental role monsters play within the genre, comics offers
plenty of fertile ground for critical assessments of any potential advances in this regard. Such a
focus is especially engaging in that, as Katherine Shaeffer and Spencer Chalifour have observed,
“Comics are monstrous themselves. Their very hybrid nature (text fused with image) makes
them so. The discourse surrounding comics…calls our attention to their very visible seams….
Comics are a veritable Frankenstein’s monster of verbal/visual media, and they can show us
monsters in glorious detail and vibrant color.”
Three recent comics texts each present an instructive range of ambiguous, disabling, but
above all enabling possibilities where the nexus of disability and monstrosity is concerned: the
highly praised comics collections Monstress [Volumes One and Two] by Marjorie Liu and Sana
Takeda (2016–17), the much ballyhooed debut graphic novel My Favorite Thing Is Monsters
[Book One] by Emil Ferris (2017), and the unheralded four-page Monster Girl comic by Helene
Fischer (2017). These texts offer an illuminating starting point for the further exploration of
the metaphorical assumptions about disability and monstrosity with which they engage, all the
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while reaffirming the crucial role of the genre’s own hybridity in foregrounding such consid-
erations. That is, the location of the monstrous body in this particular textual format offers a
range of diverse possibilities for both reinforcing and exploding the normative borders that have
been constructed to define what is monstrous as dangerous/deformed/diseased. What is more,
these texts encourage an intersectional approach to how multiple other facets of the monstrous
(such as class-based/socioeconomic, ethnic/racial, and gendered/sexual aspects) overlap with
disabled monstrosity and together blur, cross, deconstruct, and/or erase numerous lines along
their various borders around the human.
As Rosemarie Garland-Thomson has asserted, “figures of hybridity and excess such as
monsters, grotesques, and cyborgs” often are presented so as “to suggest their transgressive
potential” (“Integrating” 338), but for her one must insistently acknowledge their tendency
to “eras[e]‌real disabled bodies from the history of these terms compromises the very critique
they intend to launch and misses an opportunity to use disability as a feminist critical category”
(“Integrating” 338). Indeed, as Tobin Siebers cautions, “It is easy to mythologize disability as an
advantage. Disabled bodies are so unusual and bend the rules of representation to such extremes
that they must mean something extraordinary” (“Disability in Theory” 744–45). For Siebers,
“the political struggle of people with disabilities…requires a realistic conception of the disabled
body” that “resist[s] the temptation to describe the disabled body as either power laden or as a
weapon of resistance” (“Disability in Theory” 745). Representations of monster-human hybrids
in comics may hardly be expected to offer the sort of realism Garland-Thomson and Siebers
privilege, and the genre itself has also been prone to promulgating the supercrip.Yet, in the three
texts at issue here, only Monstress actually features a depiction of its protagonist’s disabled body
“as either power laden or as a weapon of resistance” –and her complicated case merits con-
siderable qualification, if not full reevaluation of the applicability of the label, following Sami
Schalk’s critical interrogation of stereotypical conceptions of the supercrip. All three “raced and
gendered” (Garland-Thomson, “Integrating” 337) protagonists are more aligned with freaks
like Saartje Bartmann’s Hottentot Venus persona than they are with supercrips such as Barbara
Gordon’s Oracle persona, and a large part of their truly transgressive potential is embodied in
their not merely monstrous but diverse bodies.
According to Leonard Cassuto, freaks “straddle the unstable boundary of the socially
delimited property marked ‘human’ –and as such, freaks physically threaten…the integrity of
that boundary” (87). For Garland-Thomson, the liminal and/or hybrid figure of the freak is
fundamentally intersectional in its construction, and as such needs to be considered alongside
“figures like the mulatto, the primitive, the queer, and the lady” (Extraordinary 5). In the case
of Julia Pastrana, for example, “race, gender, disability, and sexuality augmented one another…
to produce a spectacle of embodied otherness…” (Garland- Thomson, “Integrating” 338).
Intersectionality –“the idea that analyses of social oppression take account of overlapping iden-
tities based on race, gender, sexuality, class, and disability” (Siebers, “Disability and the Theory”
291) –suffuses so much of the most cutting-edge work in disability studies over the past
decade: Nirmala Erevelles’s Disability and Difference in Global Contexts (2011); Alison Kafer’s
Feminist, Queer, Crip (2013); Robert McRuer and Anna Mollow’s Sex and Disability (2015);
David T. Mitchell and Sharon L. Snyder’s The Biopolitics of Disability (2015); Jasbir K. Puar’s The
Right to Maim (2017); and so on. It is an absolutely essential element of contemporary disability
studies in general and to this crip reading in particular, which aims (following Kafer) “to address
how disability is figured in and through…other categories of difference” such as “gender, race,
class, and sexuality” (17). Kafer’s intersectional tour de force seeks “to carve out a place on the
theoretical/political map where feminist/queer/crip can feed and inform each other,” with the
hope that “this imagining [will] generate more such imaginings, such that the nodes on the map
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and the map itself multiply, proliferate, regenerate,” as there is “need” for “multiple iterations of
crip theory” (18). This chapter, in its mapping these three novel representations of the relation-
ship between disability and monstrosity in recent graphic narratives and comic books, charts a
course for one of these new nodes while encouraging rather than eschewing a befittingly mon-
strous proliferation of even more (re)generative intersectional crip aesthetics.
Liu and Takeda’s Monstress is a complex representation of monstrous disability, a thoroughly
intersectional version involving both body and mind. Liu’s complicated love for her disabled
hero and Takeda’s gorgeous illustrations invoking Art Deco and gekiga aesthetics draw readers
in through a sympathetic appeal rather than an objectionable othering, even as Liu’s lack of a
self-consciously progressive employment of disability still allows stereotypes to persist. From
the very first scene, Liu positions her readers to reject others’ pejorative attitudes toward her
protagonist’s difference. Maika Halfwolf, naked and in chains, is about to be auctioned off
into some sort of personal slavery. Though the 17-year-old has a “fully human appearance”
(1.5), she is an Arcanic –a halfbreed race in this fantasy world setting born of intermixing
between humans and Ancients (anthropomorphic animal beings whose magical powers led to
their almost god-like supremacy long ago).1 Halfwolf ’s contemporary world is a divided one,
currently in a period of uneasy stalemate after a devastating war between the human Federation
and various Arcanic powers, and her purposeful entrance into Federation territory has led to her
captivity. Her halfbreed status in and of itself colors how the human buyers see her, her “wild
beauty” (1.6), as the seller describes it, notwithstanding. On the way to delivering her to her
new owner, this seller, speaking with undisguised disgust, tells Maika, “You are a slave, an animal
piece of shit on the wrong side of the wall. If there weren’t a stalemate in the war, there wouldn’t
even be a wall and all of you inhuman freaks would be in chains” (1.10).
Halfwolf ’s positioning as a mixed-race freak represents a construction of difference that may
be glossed as a marker of disabled identity. Given the aforementioned inextricable connection
between freakery and disability –a connection that historically has relied upon the interrelated
concerns of ableism, ethnocentrism, and racism –Maika’s stigmatized racial difference as an
Arcanic opens up some generative possibilities for intersectional articulation with representations
of disability. Significantly, however, the buyers’ reaction to her difference is not only attuned to
her race; it is also influenced by the brand of an eye-like symbol in the middle of her chest and
by her left arm –or, rather, her stump, with its missing forearm and hand. One of the buyers
pipes up, “And her missing arm? That brand?…she’s deformed” (1.6). Intriguingly, the seller
replies, “Yes, it’s unsightly. Not that most of you have all your limbs. The war took its toll on
both sides” (1.6). She insinuates Halfwolf ’s “missing arm” is not only “unsightly” but unnatural,
yet at the same time she normalizes it by implying the rest of the room bears their own fair share
of battle scars. Still, these physical characteristics mark Maika’s difference as disgusting deformity,
which when combined with her ‘halfbreed’ status, cements her association with monstrosity.
The missing arm, in particular, is central to both Halfwolf ’s person and her story.
As the rest of the series develops, it is in fact this arm that predominantly signifies Maika’s
status as a monstrous body, and even as it is a mysterious source of power, the seemingly uncon-
tainable violence associated with this power (a violence Halfwolf not only is unable to control
but further is subject to herself) ensures Liu’s representation does not fall prey to the many
problematic aspects of the supercrip stereotype. Whether passed on down from an ancestor’s
blood, somehow engineered by her mother, or through a combination of those two, Maika
has a monstrum living inside of her, and this monstrum is an increasingly conscious and active
presence within her. The monstra are viewed as the stuff of legend, ravenous Old Gods bent
on consuming all of the known world; the lore of the Ancients told of a war predating human
and Arcanic memory in which they destroyed and/or exiled all of the monstra to a nebulous
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dimension called the Shadow Plains. One of Halfwolf ’s ancestors, the Shaman Empress, the
most powerful Arcanic ever, was rumored to have discovered how to release exiled monstra in
an attempt to harness their power by somehow incorporating one of them into her own body.
It is this very same monstrum that, unknown to all, now resides with Maika, and it is from out
of her stump that the monstrum manifests itself in bodily form and wreaks havoc.
Takeda reworks the traditional trappings of the Japanese monsters known as kaiju by deciding
to incorporate Maika’s monstrum as a part of her rather than a separate physical entity (Liu,
“Action”). This is a crucial feature of the text’s representation of disability. It allows Halfwolf ’s
relationship to her monstrum to be staged not (merely) as a conflict between self and other, but
potentially much more powerfully as an inner dialogue within (if not with) herself. Liu thereby
simultaneously invokes both visible and invisible disability, which invites readers to interrogate
stale assumptions about disability born out of a variety of interrelated binaries such as self/other,
inner/outer, and human/monster. At the same time, the notion that Halfwolf ’s monstrosity is
better understood as an inner conflict appears only tenuously supported, especially as she is only
beginning to approximate what the monstrum’s presence within her might mean. After all, as
her own surname constantly reminds readers, hybridity does not necessarily mean that binaries
are collapsed between two distinct, if intermixed, halves. Surely for most if not all readers, at
least at this stage, the two seem more like distinct biological organisms bound together through
a symbiotic relationship. There is some suggestion that this particular monstrum actually is
responsible for the stalemate between human and Arcanic, the source of the still unexplained
annihilation of all but a small handful of those present at the last major battle (one of whom
was the 14-year-old Maika). Now that it is waking again, it does save her at crucial moments
by destroying those threatening her, but it also attempts to more randomly assert itself in order
to appease its voracious appetite through brutal killings. Any supercrip tendencies aside, Liu’s
apparent uncritical linkage between disability, monstrosity, and violence is disconcerting, on
multiple levels.
If Halfwolf ’s mixed-race status plays a key role in problematizing any facile or final cordoning
off of such dangerous monstrosity, the hybridity of the comics genre works in conjunction with
this by reinforcing the fundamentally intersectional aspects to her complex, multifarious iden-
tity. Takeda needs no words to convey Maika’s mixture of confusion, fear, and surprise as she
witnesses the monstrum beginning to emerge from her stump (1.94).The uncertain relationship
between the two is further foregrounded specifically through the combination of image and
text, such as the scene shortly after the above emergence when the monstrum pulls itself back
into her arm (1.100). Halfwolf is clearly awake and aware, but her lack of control is conveyed
through her silence, as the only speech bubbles on the page belong to the monstrum. At least
initially, Maika hates both its presence within her and the notion that its presence suggests she is
a monstress herself. She frequently threatens the monstrum, questioning what it is doing inside
of her, telling it to get out of her, and announcing she will cut it out of her if she has to do so.
She adamantly insists, “I’m not a monster” (1.69).
Yet at various points readers are instead very much encouraged to see the two as both
psychically linked and physically conjoined. For instance, as Takeda’s illustrations visually clarify,
Maika’s brand, with its eye, actually is a visible sign of her link to the monstrum, as one specific
splash page in particular suggests –with the eye of the monstrum appearing above Halfwolf ’s
head, her hair and its fur/feathers/tentacles completely intertwined and in places completely
indistinguishable, so that it is difficult to say where the one body ends and the other begins
(1.63). Or, perhaps even more dramatically, in the panel from the same scene in which Maika
tells herself she is not a monster, readers are confronted with a close-up of Halfwolf ’s eye staring
at them, the rest of her face otherwise completely covered by her disheveled hair. Not only is
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the image strikingly reminiscent of the monstrum’s eye and tentacles, but the only words in
the panel are a monstrum thought bubble positioned so as to seemingly emanate right from
the corner of Maika’s eye (1.68). It is such visual depictions of their connection that further
encourage readers to reserve judgment on precisely where they should be drawing the line
between girl and monster, such as when in one panel Halfwolf is taken aback by the violent
excess of the monstrum’s enjoyment of its release from within her, but then in the next panel
the Inquisitrix dispatched to recapture Maika disgustingly calls Halfwolf a “demon” (1.97). This
provocative blurring of boundaries suggested by the interplay of graphic and textual elements
is, in other words, a crucial component to the work’s potential (re)imagining of the nexus of
disability and monstrosity.
It is perhaps not surprising, then, that in Volume Two Maika eases into an uneasy truce
with her monstrum as they not only experience increasing access to one another’s thoughts
and memories but actually strike up something of an inner conversation. She learns that the
monstrum has a name, Zinn, and is similarly attempting to remember the past in order to
understand the present. Zinn relives snippets of conversation with his sister-brother Hajin, as
they debated whether to end their exile to the Shadow Plains (a banishment they had accepted
so they “would not become murderers” [2.103] and thereby avoid the destruction of the known
world). Zinn recalls callously remarking, “The creatures who inhabit this world are insignifi-
cant, unworthy of our beneficence” (2.103). Crucially, Zinn now regretfully observes, regarding
that comment, “I was a fool” (2.103). All the more significantly, Zinn is able to access this past
seemingly only through his connection to Halfwolf, as their memories appear intertwined on
a fascinating page of panels visually and verbally depicting a reflective and even sensitive Zinn,
at times almost humanoid in appearance, being led by the hand into the light of his long-ago
memories by a version of Maika when she was a little girl (2.92).
While details are still few by the end of Volume Two, it seems Zinn ended up betraying Hajin,
either killing her or causing her death. But his current self-questioning suggests his potential
for growth. Near the end of Volume Two, during a mortal showdown with a hidden surviving
Ancient, Lord Rohar the Insatiable (also known as the Blood Fox), Zinn hears the words of
both his sister-brother and his beloved Shaman Empress encouraging him. The former warns
him, “Your arrogance will only lead to suffering…and war…You must wake up…You must
open your mind”; the latter, “Do not stop becoming someone new…Move forward always”
(2.130). Zinn worries, “What I am…cannot truly change,” and the Blood Fox attempts to
seize on his doubts while simultaneously trying to tricking Maika into siding with the Ancient
over the Old God: “The monster wishes to cast the greatest illusion of all. That it is one of us”
(2.131). The Blood Fox here performs a double othering, ostensibly excluding the monster
from a connection he insists Maika shares with him (“us”) when in reality he rejects her as a
“repulsive mongrel” (2.131).
It remains uncertain where the series will go, but it seems Maika must embrace her partner-
ship with Zinn (and, thereby, accept her identity as the titular Monstress). Liu has described the
story as Halfwolf ’s journey to “relearn what it is to be human,” a journey during which “Maika
is going to discover her humanity through this monster, and the monster is going to discover
itself as well” (“Marjorie”). This reciprocity is essential, especially as Liu conceives of Halfwolf ’s
lived experience of disability, her “psychic wounds” as well as her “physical ones,” pejoratively
as examples of her brokenness, of how “monstrousness…deforms people –how it deforms their
psyches, how it deforms their bodies and how it deforms worlds” (“Marjorie”). At the start of
Volume Two, Maika remembers her mother telling her, “The world breaks us all. But strength
can flow from those broken places” (2.8). Maika’s seems to be a world in which brokenness,
impurity, hybridity, difference have the chance to be reconceived, as shows of strength rather
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than of weakness or defectiveness. Liu’s primary foci where Halfwolf ’s intersectional identity
is concerned are race and gender, not disability. Still, granting the more fundamental roles of
gender and race, Maika’s experience is also profoundly impacted by disability, and not just her
missing arm; indeed, the challenge of living with post-traumatic stress, along with the psychic
struggle/connection with her inner “monster,” are, arguably, central aspects of her character.
Thus, even though there isn’t much evidence that Liu set out to offer readers a strong disabled
protagonist, the text nonetheless provides such a character, a complex embodiment of the nexus
of monstrosity and disability.
Like Monstress, Ferris’s My Favorite Thing Is Monsters productively fosters an awareness of
the generative intersectionality between disability and other identity categories while vitally
moving toward a more quotidian context for the lived experience of these aspects of identity.
The main markers of difference that Ferris is concerned with are class and sexuality. Surprisingly,
disability is not as explicitly represented as in Liu’s Monstress, even though Ferris was disabled
as a child. She describes herself as experiencing “years of extreme pain” owing to severe scoli-
osis until corrective surgery when she was ten (Ferris, “The Holocaust”). Further, perhaps not
uncoincidentally, Ferris was recovering from extensive paralysis in the wake of encephalitis and
meningitis when she started this project. It is hard, then, given both these biographical details
and the long history of monstrosity as a popular means of representing disability, not to read
Ferris’s conception of monstrosity as a stand-in for disability. Indeed, even without an explicit
framing of disability as monstrosity, MFTIM already has staked a claim to being one of the
genre’s most important representations of disability.
A large part of what has made this book such a runaway success is the extent to which its
art trades off of the aesthetic of classic horror films and pulp monster magazines, capturing
their appeal for younger audiences in particular. In fact, throughout the graphic novel, Ferris
features 25 full-color splash pages purporting to be the cover of one of the protagonist’s mags
(with titles like Arcane, Dread, Ghastly, Ghoulish, Horrific, and Terror). In one example, Robotic
Hybrids of Zombieland, the monsters gracing this particular cover draw upon popular stereo-
types of the developmentally disabled, psych ward patients, and people with facial “deformities,”
thereby subtly creating a haunting underlying human presence within these ostensibly inhuman
creatures, even as their status as robotic hybrids on another level further distances them from
any genuine articulation with the human (207).This complex effect replicates the text’s broader
engagement with the popular tradition of monsters that are often somehow sympathetic even
as they are first and foremost so frightful.
Ferris’s literary representation of monstrosity primarily revolves around her protagonist –
who sees herself as a monster, who wishes she was a monster, and who is drawn as a monster –
ten-year-old Karen Reyes. As such, even though this little monster goes around in makeshift
detective garb as she tries to piece together a couple of potentially terrible mysteries, Ferris’s
lovingly tongue-in-cheek evocation of the noir and horror genres actually moves readers closer
to a more realistic consideration of the lived experience of disability than Liu’s magical hybrid-
warrior in Monstress. One might not suspect this to be the case, however, when Ferris’s narrative
opens with Karen dreaming that she is transforming into a werewolf as her neighbors form a
mob to kill the source of the horrible howls they hear. Not only do they spew angry threats
against the “freak” (8)/“monster” (10) they seek, the mob members are scary in their own right
owing to the exaggerated way in which Ferris draws their faces, even as they are simultaneously
mocked through little details like some of them wielding spatulas, phones, and suitcases in add-
ition to baseball bats and torches (13–14). Karen wakes as she is about to be shot, and although
she is no longer the large, imposing werewolf from her dream, her actual appearance is nonethe-
less as a little human-werewolf hybrid, very furry, with sharp teeth and clawed feet.
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During her days, Ferris’s little monster- g irl is subject to incessant name- calling at
school: crazy, creep, dirty, disgusting, dog, dumb, freak, gross, hillbilly, idiot, loser, sicko, stinky,
stupid, ugly, weirdo, to name a few. Some of these slurs rely on the long history of animality
being attributed not only to women and the indigenous but to the disabled as well, a problem
taken up by Sunaura Taylor in her critical articulation of animal studies and disability studies,
Beasts of Burden (2017). As many of these epithets suggest, though, she is teased in large part
because she is poor. Karen lives in a small basement apartment with her single mom and her
adult brother, Deeze. Her (imaginary) friend Sandy –a coalminer’s daughter who “looks pale”
and is “always hungry” because she is “skin and bones” (96) –embodies her anxieties about
class and poverty. Karen is definitely aware of how others judge her by her socioeconomic status.
At the same time, given the fact that Ferris based Karen’s character on her own childhood, a
disability studies approach to this monstrous body understands particular labels such as “freak”
and “ugly” as reflecting a more dramatic physical difference than just the sort of “dirty” and
“stinky” appearance bullies might attribute to an underprivileged background. While none of
the illustrations present Karen as having a hunched back or spinal curve or uneven legs, Karen’s
identification as a werewolf, especially during the aforementioned transformation scene, evokes
the pain Ferris experienced before, as well as after, corrective surgery.
The intersectionality of Ferris’s representation of monstrosity extends beyond the all-too-
often overlapping difficulties of disability and poverty, however. For one, Karen’s adoption of
an alternative, even celebratory conception of hers as a monstrous body directly relates to
the fact that she likes girls. She is in love with her friend Missy, whom she used to bond
with over monster fandom until Missy’s wealthy mother ended their friendship because she
disapproved of Karen’s poverty. Whenever Karen pictures them together in a romantic light,
she is a werewolf and Missy is a vampire. The connection between sexual difference and mon-
strosity is strengthened through a classmate who befriends Karen: Franklin, a man-size boy
with severe facial scarring, the comic’s Frankenstein character. Karen and Franklin, who is gay,
bond in part because they both face derision over their monstrous bodies (and their monstrous
nonnormative desire). For instance, on the night of Martin Luther King Jr.’s assassination, a
well-dressed African-American gentleman verbally assaults the two kids instead of providing the
distraught Franklin with the sympathy he is seeking: “Freaks and queers don’t have any place
near decent men and women!” (282). Franklin and Karen face rejection both for how they look
and how they love.
The Franklin plotline further reinforces disabled monstrosity’s intersectionality with race/
ethnicity, for Karen’s conception of her monstrosity is also connected to her family’s mixed-race
background. Her father was Mexican and her mother part Appalachian Irish and part Native
American. Race is central to the representations of monstrosity offered throughout the book’s
second main plotline, the story of Karen’s recently deceased neighbor, Anka Silverberg. Anka,
who experienced a number of mental health issues throughout her life, was a Holocaust sur-
vivor. Her life in Germany –first as she grows up in the brothel where her emotionally unstable
mother worked, then as she finds herself from a young age entrapped in sex work, and lastly
as she experiences deportation to one of the camps –was a real-life horror story. Significantly,
Anka is never demonized for her struggles, but is represented in a thoroughly sympathetic light;
as her husband insists during his defence of her to Karen, “After so many years of her admit-
tedly odd…uh…behavior, it would be understandable if you’d concluded that…Anka was…
mad…but in truth Anka was an unconventional hero…” (137). Indeed, Anka’s life story, so
profoundly impacted by both race and disability, plays a central role in Karen’s developing dis-
tinction between good monsters like her werewolves and vampires and bad monsters such as
Nazis and rapists.
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In a terrible scene in which Karen is only seconds away from being gang raped for being a
“freak” (246), she thinks of Anka. She says,“Right that minute I knew the bullies wanted to hurt
my soul in a way that they hoped would turn my body into a coffin” (243). “In that sweaty
panicky moment,” she continues, “I saw that using that way to drive a spirit towards death was
the act of a bad, weak, soul-ugly monster,” and then she hears Anka whispering in her ear, “Nazi,
Nazi, Nazi. A Nazi is a person who chooses to not see anything that would keep them from
being cruel” (243). A group of boys have been harassing her on a daily basis, spitting on her and
calling her names. As her notebook drawings of a werewolf dismembering these bullies reveal,
her self-identification as a monster is in part a direct response to the disempowerment she feels
as an object of ridicule. To the would-be rapists, who see her body as a “pile of crap” (246),
this violent act is about hurting and humiliating her, but luckily, with Anka’s voice telling her
to resist and fight, she is able to delay them just enough for help to arrive. She kicks the lead
attacker in the groin, bloodies his nose, and then Franklin arrives to run them all off just as they
have regrouped to assault her once again.
Karen’s insight here regarding the idea of bad monsters anticipates the focus of the book’s
final scenes, particularly a flashback Karen has to her thoughts about a poster Deeze used to have
in his room depicting demons tormenting a helpless victim. She relates, “Back then I already
knew I wanted to be a monster…But looking at that poster I knew there were good monsters
and bad ones…” (367). “The bad monsters,” she continues, “want the world to look the way
they want it to.They need people to be afraid” (368).While the good monsters “live in their lair
and mostly mind their own biz,” only “sometimes giv[ing] somebody a[n]‌[unintended] fright
because they’re weird looking and fangy…a fact that is beyond their control,” the bad monsters
“are all about control…They want the whole world to be scared so that bad monsters can call
the shots” (368). It is possible that some will view Karen’s monstrosity as merely a childhood
fantasy, an escapism she needs to outgrow with age. And, in fact, in a sad scene in the wake of
their mother’s death, a drunk Deeze seems to be trying to push her to grow up through pre-
cisely such an acknowledgment, when he stands her in front of a mirror and makes her look at
her reflection. He tells her she is “a girl! Not Larry Talbot three quarters the way to being the
fucking wolfman” (355). Significantly, for the only time in the whole book, Karen’s face in this
panel is fully human –no fur, no fangs. But Deeze seems to realize this attempt to strip her of
the monstrosity she relies on for empowerment is misguided –for, just a little bit later, when he
begins to broach the subject again, saying, “You do realize that I’ve been humoring you about
monsters…Monsters are not real…” he looks at her, hesitates, and backtracks, “er uh, real…
really smart enough to understand…what an absolutely wonderful monster you’d make” (370).
As one might expect, the pain of losing her mother leads to a lot of questions for Karen, and
in the book’s final scene she recounts a dream she had in which Anka and Saint Christopher the
Werewolf Saint were arguing, with the latter urging Karen to seek vengeance on her beloved
monsters for not saving her mom (charging them with refusing to allow her to live on as one
of the undead like them). She lashes out and violently destroys their own undead lives, one by
one. Afterwards, Karen feels “more hollow than ever before” (402), and as she listens to the
werewolf ’s dying words readers realize that in attacking her monsters she was actually attacking
herself. Ferris communicates this both visually as we watch the expiring werewolf morph into
Karen and verbally when the werewolf (now looking exactly like her) tells Karen, “I should
have gone into her room…I cared but I was kind of…freaked…it hurt to see how different she
looked” (403).
Early on, Karen counters the circular reasoning she hears from others, positing, “Because
monsters couldn’t possibly be real, then they’re not real” (17). According to Karen, “The dic-
tionary says the word monster comes from the Latin word ‘monstrum’ which means ‘to show’
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(like to deMONSTRate)” (17). “The truth is that there are a lot of things,” she elaborates, “we
don’t see everyday that are right under our noses –like germs and electricity and just maybe –
monsters are right under our noses too” (17). MFTIM demonstrates that Karen’s distinc-
tion between good monsters and bad monsters is an absolutely vital one as it allows readers
to conceive of Karen’s monster identity as an empowering ownership of what amounts to an
intersectional crip aesthetic, informed not only by disability but also by overlapping aspects of
class, ethnicity/race, gender, and sexuality. Ferris’s reclaiming of the monstrous body reassigns
traditionally pejorative meaning to a new, celebratory context while still preserving/reserving
the long-standing negative connotations for more appropriate designees whose monstrosity is
not based upon disability whatsoever.
For all its rich intersectionality, MFTIM’s progressive reimagining of the monstrous body
only goes so far in that Karen is never explicitly identified as a person with a disability. For all
the well-deserved accolades that have greeted Liu’s and Ferris’s works, a humble comic by an
unknown artist most fully realizes the transformative impact of a crip reappropriation of mon-
strosity. Helene Fischer’s Monster Girl features an autistic artist’s rendering of an autistic protag-
onist. It is important not merely as a literary representation of disabled monstrosity by a person
with a disability, but also as a representation that is explicitly engaged in illuminating the lived
experience of disability. It is also accessible to blind/visually impaired readers –the version in
the electronic edition of All the Weight of Our Dreams (2017) provides image descriptions via
ALT text for each panel. Happily, the print version provides these same descriptions in a tran-
script immediately following the comic, offering yet another layer to the multimodal combin-
ation of image and text.
On the cover page, Fischer’s protagonist “stands with her back to the viewer in an empty,
seemingly endless room” (259).The emptiness is not suggestive of vacancy, however, but instead
gives “a feeling of open space,” particularly in conjunction with the brightness of Krissy Baxter’s
coloring (259). Monster Girl herself has “bright red skin, two horns coming from dark hair
done in two braids, and clawed hands,” plus “a little forked tail” (259). The caption reads, “I’m a
monster girl” (255). In the first panel of the second page, though, Monster Girl “is now a human
girl, with tan skin…hearing aids, and sad brown eyes” (259). The darker coloring of this panel
is intended to convey “isolation and muted emotion” (259), in conjunction with the caption
which reads, “I’m not a real monster” (256). The next two panels (which confirm a pattern of
alternating between monster and human versions of Fischer’s protagonist) further the idea of
her monstrosity as a social construction. In the first, Monster Girl is staring at her clawed hands,
below the caption, “They just think I am” (256), implying her sadness stems from how others
see her, not from her own identity. Monster Girl clearly experiences this judgment as frustrating
and perplexing, which in turn leads to anger and/or self-doubt, as she is next drawn with
clenched fists below the caption, “Am I?” (256).
Significantly, as if in answer, the second row of panels shifts the sense of her monstrosity
back toward that conveyed by the cover, with Monster Girl now drawn among “a huge
crowd of people with indistinguishable faces” (260). There are in fact other monster shapes,
but she doesn’t notice them. As the caption suggests, she is focused on her feeling of being
“surround[ed]” by “dull cut outs of the same gaping face” (256). Intriguingly, in the left-hand
panel, she is not facing the others but staring back directly at the readers with an expression that
might be variously interpreted as communicating her unhappiness with the situation, checking
to see if readers are following her into the crowd, challenging readers to do something about
the situation, or even indicating she holds readers as partly to blame for her predicament. The
“dull cut outs,” the caption continues on, both in the bottom corner and then on into the next
panel’s caption, are “repeated” –repeated, as the right-hand panel caption insists, “again and
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again and again and again and” (256). These panels subtly valorize autistic experience, with
the bright colors and openness conveying a rich autistic sensory interaction with a world that
goes far beyond a more limited focus only on other people. Moreover, neurotypical lives are
the ones cast as empty and boring (“gaping” and “dull”), as narrow and patterned (“same” and
“repeated”) –a powerful inversion of standard assumptions about autistic lives. The transcript
for Panel 5 provides yet another layer to the hybridity of humanity and monstrosity in that for
the first time Fischer’s protagonist, when drawn without her monster features, is referred to, not
as Monster Girl, but as “Human Girl” (260).
Fischer then depicts Monster Girl alone again, sitting in a therapist’s office, in a setting sug-
gestive of both of the competing versions of autistic experience, “open space and isolation”
(260). The first half of the caption states, “They have a name for my kind –for us monsters,” a
name the second half plainly provides: “They call it autism” (256). This explicit identification
of monstrosity with disability is crucial, as until then (other than the mention of hearing aids),
there has been no explanation for what makes Monster Girl feel so different, so monstrous.
Some may have assumed it was her gender; others visually may have determined it was her eth-
nicity. The explicit assertion of autism as the type of monstrosity being referred to here suggests
the potential intersectionality of disability with racial-or gender-based difference, but, above all,
allows for an assertion of autistic identity (“my kind”) and solidarity (“us monsters”) in place
of neurotypical othering (in which “monsters” are her “kind” only because neurotypicals have
labeled them as such).
Even so, some decided ambiguity remains. Given that in the transcript Fischer has just raised
the possibility that her protagonist has a bifurcated identity, one might wonder, is she some-
times Monster Girl and at other moments Human Girl? Must she always be either one or the
other, the descriptor determined merely by how she sees herself or is seen by others in any
given moment, or can she be both at the same time, regardless of the adjective employed?
Might Fischer instead be suggesting the operative binary facing her protagonist is (nonautistic)
human/(autistic) monster? That is, is Monster Girl code for Autistic Girl? Obviously, one is not
autistic only in particular places, or at particular times, even if one’s behavior and/or appearance
may suggest otherwise, so does this mean the protagonist is always monster and human, never
just one or the other, in spite of the binary? The transcript for the first four panels on page 3
continues the alternation between the identifications of Human Girl and Monster Girl. The
captions on this page visually serve to encourage readers to consider the identities of Monster
Girl and Human Girl as interrelated by appearing in boxes straddling across multiple panels for
the first time. Fischer’s protagonist relates that her parents say she is just “un poco diferente”
(the Spanish reinforcing the intersectionality of her difference with ethnicity), but then clarifies
through the next caption (also straddling two panels), “I’m told by everyone else I’m a freak”
(257). Strikingly, the word “freak” appears below a drawing of Human Girl, not Monster Girl.
The transcript for this panel contains the third reference to the girl clenching her hands, but
significantly this is the first time the response is attributed to Human Girl, a small detail but with
big implications for Fischer’s blurring the binary’s lines, requiring readers to revise their take on
the previous references if they understood the clenching to be a sign of autistic monstrosity.This
deconstruction continues visually as well, with the captions in the second row of three panels
now extending out beyond both edges of the primary panel on which they are placed (with
the middle caption straddling parts of all three). Fischer moves even further toward the erasure
of the line between monster and human, between autistic and non-autistic, in the transcript.
For example, in the page’s fourth panel she breaks her alternating labeling pattern, dropping the
Human Girl name and calling the protagonist Monster Girl even though she is drawn without
her physical traits of monstrosity in that panel: according to the transcript, “Monster Girl is
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human again” (261). Powerfully, Fischer then depicts Monster Girl as crying, expressing an
emotion that stereotypically one does not associate with monsters.
In the final two panels of page 3, the comic only deepens the complexity of the questions
about her identity. In Panel 7, Monster Girl asserts, “My identity intersects in ways they don’t
understand,” and in Panel 8 Human Girl elaborates, “And I’m a monster for it. Am I?” (257).
Significantly, Fischer returns in the transcript to calling her Human Girl in the second of the
panels, at a stage in the narrative when the distinction between being a monster girl and a
human girl now has been undermined.The first part of the caption reinforces the weakening of
the binary, as Human Girl seems to be embracing her identity as a monster. Fischer’s protagonist
is still in the process of searching for answers, however, as she immediately qualifies her assertion
she is a monster by asking for the second time, “Am I?”The visuals would seem to suggest she is
both at once, since in Panel 7 Fischer has drawn a generic shadow shape behind Monster Girl,
but in Panel 8 Human Girl’s shadow has horns. Interestingly, the captions for these panels return
to a self-contained format, at the very moment when the bodies and shadows are so noticeably
crossing boundaries. Even more significantly, in Panel 7 Fischer breaks for the first time the
pattern of the first 13 panels, alternating between monster and human depictions of the protag-
onist in the drawing. Even though she was visually Monster Girl in Panel 6, she is so again in 7,
while reader expectations entail they should be seeing her human version. As the comic shifts
onto the last page, then, this reversal of the pattern seems to further corroborate the idea that
Fischer’s protagonist is both monster and human.
The caption at the very top of the first panel of the last page reinforces the notion that
the primary aspect of her intersectional identity (as both Monster Girl and Human Girl) is
her autism. It further insists that it is this disability that qualifies her as a monster. The caption
acknowledges, “Developmental disabilities are scary to people who don’t have them” (258).
Visually, though, Fischer has stepped back into the original pattern, and thus significantly it
is not Monster Girl but Human Girl readers see as the visual representation of what is osten-
sibly so scary, so monstrous. This humanization of the ostensibly monstrous disability is then
augmented by the second half of the caption, inverting the dynamic of who should be scared
of whom, with Human Girl confessing, “But if they are scared, I’m terrified” (258). Precisely at
this moment of vulnerability, Monster Girl sees another monster for the first time. Up until this
point, Fischer’s protagonist has been alone throughout the whole comic, never having spoken
to or interacted with any other person, seemingly so isolated or ostracized from everyone else
all around her that any other people pictured have been drawn in the same style as the afore-
mentioned “dull cut outs” with “indistinguishable faces.” Now, however, one of these outline
shapes has come into focus for her, and she sees a girl with “blue scaly skin” who is “muttering
to herself ” (262). The caption captures her important realization: “I am not the only ‘monster’
out there” (258).
Fischer’s decision to place the word “monster” in quotation marks for the first and only
time foregrounds the constructed nature of the category, but does not prevent such so-called
monsters from appropriating this construction as an empowering identity marker and as a
means of establishing welcome relationships. Indeed, the next caption reads, “We just have to
find each other” (258), while Human Girl, “pulling her headphones off, gets the attention” of
an African-American girl “wearing the same clothes as the blue monster girl from the previous
panel” (262). The transcript for the following panel explicitly confirms this arc toward shared
monstrosity as a means of fostering connection. The new monster, now officially christened
Blue Scaly Girl, “looks sideways at Monster Girl who waves,” and happily “there is a feeling of
immediate solidarity and understanding between the two girls” (263). Fischer visually signals
the significant shift taking place by (also for the first and only time) providing a slant rather than
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Chris Foss
a vertical gutter between panels in the same tier. The caption, returning to the notion of scared
rather than scary monsters, reads, “Then we can be scared together” (258).
Intriguingly, right after the word “together,” the next panel features a close-up of Blue
Scaly Girl smiling, the only panel in which Fischer’s protagonist does not appear. The image is
a powerful one, requiring readers to expand their view of the comic’s focus only on Monster
Girl’s perspective, reinforced by the lack of any caption (which are used to convey Monster
Girl’s thoughts), making it the first panel without any text. What is more, this close-up on the
new character visually positions readers in Monster Girl’s place, as the object of Blue Scaly Girl’s
gaze and as the one gazing back at Blue Scaly Girl, inviting a novel and potentially revolutionary
identification with Monster Girl’s subject position (instead of always looking at her). Fischer
also indicates the panel’s importance through a second (and last) disruption to the pattern of
alternating monster and human depictions, which the first three panels featuring the two girls
had (re)established. Then, in the penultimate panel, “The two girls (human again) link hands”
(263). Compellingly, though, the final panel’s description reads, “The two girls (monsters now)
walk through the park, holding hands” (263). Fischer’s decision to end not with characters
who have shed monstrosity for humanity but rather who have found connection through their
shared monstrosity speaks volumes.
The penultimate panel, as in the preceding one depicting Blue Scaly Girl’s face, lets the
image of their joined hands do all the talking, without a caption. With the final panel, though,
readers are returned to the protagonist’s commentary with the caption, “And maybe one day,
not at all” (258). Powerfully, the caption does not express a wish to one day no longer be
monsters –their shared hope is, rather, not to have to be scared.Visually, the image reinforces the
positivity and the optimism of the story’s arc, its foreground consisting of dark outlines of trees
and bushes the girls are leaving behind.They face away from readers and toward the open space
of the path in front of them, an even more effective graphic rendition of “the feeling of open
space” than the cover page, with the latter’s encroaching darkness here replaced by horizon and
sky, beckoning the two companions toward a shared, not scared, future.
Monstress, My Favorite Thing Is Monsters, and Monster Girl each offer a complex tapestry of
the nexus of disability and monstrosity, suggesting various enabling possibilities for a crip re-
visioning of disabled monstrosity that incorporates the insights of an inclusive intersectionality.
They embody the particularly promising potential such a hybrid genre holds for the decon-
struction of traditional templates and the (re)construction of empowering alternatives to mon-
strosity. All three suggest the extent to which the approach to places and spaces labeled with
“Here There Be Monsters” may productively produce excitement and empathy instead of
hatred and horror.
Note
1 All uses of boldface in direct quotations are original to the primary texts, not my own emphasis.
Works cited
Cassuto, Leonard. “Freak.” In Keywords for Disability Studies. Eds. Rachel Adams, Benjamin Reiss, and David
Serlin. New York: New York University Press, 2015, 85–88.
Erevelles, Nirmala. Disability and Difference in Global Contexts: Enabling a Transformative Body Politic.
New York: Palgrave Macmillan, 2011.
Ferris, Emil. “The Holocaust, Art, Chicago & Sickness.” Interview by Hillary Brown. Paste, February 23,
2017. Accessed September 5, 2018.
———. My Favorite Thing Is Monsters [Book One]. Seattle, WA: Fantagraphic Books, 2017.
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Fischer, Helene. Monster Girl. In All the Weight of Our Dreams: On Living Racialized Autism. Eds. Lydia X. Z.
Brown, E. Ashkenazy, and Morénike Giwa Onaiwu. Lincoln, NE: DragonBee P, 2017.
Garland-Thomson, Rosemarie. Extraordinary Bodies: Figuring Physical Disability in American Culture and
Literature. New York: Columbia University Press, 1997.
———. “Integrating Disability,Transforming Feminist Theory.” In The Disability Studies Reader, 4th ed. Ed.
Lennard Davis. New York: Routledge, 2013, 333–53.
Kafer, Alison. Feminist, Queer, Crip. Bloomington, IN: Indiana University Press, 2013.
Liu, Marjorie. “Action at a Distance.” Interview by Brigid Alverson. Comic News, November 8, 2016.
Accessed September 5, 2018.
———. “Marjorie Liu Raises Dark Questions.” Interview by Robert Tutton. Paste, November 4, 2015.
Accessed September 5, 2018.
———. Monstress,Volumes One and Two. Illus. Sana Takeda. Berkeley, CA: ImageComics, 2016–17.
McRuer, Robert, and Anna Mollow, eds. Sex and Disability. Durham, NC: Duke University Press, 2015.
Mitchell, David T., and Sharon L. Snyder. The Biopolitics of Disability: Neoliberalism, Ablenationalism, and
Peripheral Embodiment. Ann Arbor, MI: University of Michigan Press, 2015.
Puar, Jasbir K. The Right to Maim: Debility, Capacity, Disability. Durham, NC: Duke University Press, 2017.
Schalk, Sami.“Reevaluating the Supercrip.” Journal of Literary & Cultural Disability Studies 10.1 (2016): 71–86.
Shaeffer, Katherine, and Spencer Chalifour. “Introduction.” ImageTexT 8.1 (2015): n. pag. Dept. of English,
University of Florida. Accessed September 5, 2018.
Siebers, Tobin. “Disability and the Theory of Complex Embodiment—For Identity Politics in a New
Register.” The Disability Studies Reader, 4th ed. Ed. Lennard Davis. New York: Routledge, 2013, 278–97.
———. “Disability in Theory: From Social Constructionism to the New Realism of the Body.” American
Literary History 13.4 (2001): 737–54.
Taylor, Sunaura. Beasts of Burden: Animal and Disability Liberation. New York: The New Press, 2017.
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6
SPECTRALITY, STRANGENESS,
AND STIGMAPHILIA
Gothic and critical disability studies
Sara Wasson
Let us not mince words: representations of disability in Gothic literature have most often been
toxic, limiting, and corrosive. How, then, might there be a case for resurrecting the term as
of potential value in the discourse of critical disability studies? In this chapter, I describe the
ongoing dangers of Gothic in disability representation, but also argue that in some cases, a
Gothic mode of representation can be used to effectively indict suffering ensuing from social
and environmental maladaptation. Furthermore, I suggest that a representational mode preoccu-
pied with suffering and estrangement can mesh with increasing scholarly interest in recognising
the affective complexity of disability experience, complicating the division between disability
and impairment, and contemplating the disorienting temporal structures that can characterise
experience within maladaptive environments. I will close by briefly illustrating my argument
with reference to texts that use Gothic conventions and intertextualities to explore disability,
social exclusion, and impairment. In the process, I will explore the concept of stigmaphilia, in
two registers, and I will propose the concept “stigmaphilia in a minor key.” This chapter makes
a case for the value of the sad, the strange, and the spectral.1
The perils of a Gothic mode in disability representation

Since the eighteenth century, Gothic can at times be understood less as a genre than a mode
occupying other literary genres (Botting 14). While a challenge to define, the texts typically
brought under this catholic critical umbrella tend to share characteristic qualities of emotion,
time, and space. The emotions its protagonists typically feel include horror, terror, paranoia,
and melancholy (Smith 84; Punter 184; Botting 3). Readers have a different response (see
Spooner and Jones), so my comments here apply to the intra-textual worlds engendered by the
fictions. Within these textual worlds, fraught emotion colours the experience of both space and
time. Gothic often features claustrophobic spaces of confinement, febrile distortions of time,
and ancient –even supernatural –threat. Protagonists are frequently vulnerable, distressed, and
struggling within cryptic and hostile conditions. It is immediately clear, then, that such a mode
poses multiple dangers for disability representation. I will review three: a preoccupation with
protagonists enduring misery and isolation; traditions of depicting unconventional bodies and
minds in terms of monstrosity; and the way the mode lends itself to a narrative of an individual
fallen into misfortune.
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Spectrality, strangeness, and stigmaphilia
Firstly, Gothic’s emphasis on anguish is directly counter to core tenets of disability studies.
Disability studies often emphasises the need to differentiate disability and impairment.A medicalised
view of disability defines it in terms of somatic, cognitive, or emotional impairment of function,
seeing the cause of disability in terms of an individual’s flawed body or mind to be cured or
managed through medical intervention. The social model of disability, by contrast, understands
disability as a function of a stigmatising society and a maladapted environment (Oliver). Disability
is not the same thing as impairment, and neither should mean misery or isolation.There is urgent
political necessity to refuse despairing representations of disability (Davis; Finger; Linton; Siebers;
Garland-Thomson, Extraordinary Bodies; Couser, Recovering Bodies). Bill Hughes, for example,
justly condemns the “personal tragedy” framing of disability, in which “disabled people are cast as
‘unfortunates’… in the dark throes of great suffering,” in a state of “ruin, a blighted life” (70–71).
Such negativity facilitates continued marginalisation of people living with disability, in that it
positions disability as a consequence of personal misfortune to be remedied by medicalised cures
and paternalistic charity instead of being remedied by making environments more accessible and
society less exclusionary. Even more dangerously, a life of suffering is sometimes seen as devalued
life not worth living –and perhaps one that should be taken away, as contemporary debates
over euthanasia make disturbingly clear (Finger; Overboe; Torrell; Siebers). There continues to
be an urgent need for narratives of disability experience to, as G. Thomas Couser says, “counter
the too often moralizing, objectifying, pathologizing, and marginalizing representations of dis-
ability in contemporary culture” (“Disability” 606). Indeed, Rosemarie Garland-Thomson argues
for “seeing disabled bodies…as extraordinary rather than abnormal,” and celebrates literature
that hails disability in affirmative ways (Extraordinary Bodies 137, 108). The term “disability gain”
denotes the way that at times, “conditions of impairment are regarded not as limiting or crippling
but as enabling new epistemological and political forms” (Davidson, “Cripping Consensus” 433).
In its relentless interest in fear and distress, Gothic seems diametrically opposed to the important
political goal of countering negative representations of disability.
Secondly, many Gothic texts abound in ideologically poisonous representations of som-
atic or cognitive variation in terms of monstrosity. The term is etymologically rooted in the
words monstrare (to show) and monere (to warn), and somatically divergent bodies have been
read symbolically since ancient times, as signs of divine warning, markers of warped maternal
imagination, or the outward signifier of a flawed genetic code, and more (Shildrick, Embodying
the Monster; Garland-Thomson, “From Wonder to Error”). Diverse though these meanings may
be, the term “monster” has rarely had positive connotations. Furthermore, the symbolic rep-
ertoire “monster” accretes in any era can be read as a subset of the toxic narrative devices of
“discursive dependency” and “narrative prosthesis,” identified by David Mitchell and Sharon
Snyder, in which disabled characters are used as plot catalysts and metaphorical shorthand for
narratives that ultimately support a non-disabled imaginary, eliding the ways disability is socially
manufactured and diminishing the experience of people living with disability. Even when such
symbolic substitution may seem less hostile –for example, making a particular disability sym-
bolic of a state of social precarity, rather than evil –it remains highly problematic to recruit
disabled bodies to such symbolic labours. As Michael Davidson warns,
cultural forms depend on a putatively normal body to reinforce regimes of national,

racial and sexual normalcy while using the person with a cognitive or physical impair-
ment as a metaphor for the queer, subaltern, or marginal. …permitting dominant
social structures to be written on the body of a person who is politely asked to step
offstage once the metaphoric exchange is made.
(“Concerto” 615)
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Sara Wasson
Such symbolic moves erase the social complexity of the lived experience of disability or illness,
and reduce people with disability to figures to bolster a non-disabled imaginary. Without
question, these representations have risks. It has been suggested that demonising representations
of disability and monstrosity might be partially detoxified through readerly self-awareness of
Gothic as a fantastical and non-realist mode (Anolik 186). In response to that defence, how-
ever, I echo Marie Mulvey-Roberts’s cautionary question: “how hermetic is the Gothic con-
tainer?…The Gothic monster has been a rallying point for cultural, nationalist or religious
hegemonies, seldom aware of how they too participate in the creation of monstrosity” (3–4). I,
too, would suggest that when Gothic is used as narrative prosthesis, in particular, no degree of
critical awareness can wholly purge it of representational risks. In other words, I am not trying
to recuperate all Gothic writing.
Gothic’s characteristic preoccupation with narratives of injury, deterioration, fall, and exile
is a third significant problem for conjunctions of Gothic and disability representation. Such
tropes are common in illness narration and have long been explored by medical humanities in
terms of heroic effort to find meaning in illness and build a new coherence from a life pur-
portedly “shattered” by illness (Charon 1898; cf. Frank; Hawkins), although scholars are increas-
ingly challenging the valorisation of “coherence” (Hyvarinen et al.; Woods; Whitehead; Wasson,
“Creative Manifesto” and “Before Narrative”). Disability studies, in turn, has long resisted these
tropes of interrupted life, spurning the rehabilitative arc that accompanies that framing meta-
phor and questioning the assumption that a state of disability is an unnatural one that must be
recuperated and corrected (Overboe 275). Images of illness as exile, of people rendered ghostly
by affliction, and mourning for a pre-illness self, can imply that illness or disability are unnatural
interruptions to the story of a “normal” body.There are multiple flaws in the interruption trope.
It bolsters the dangerous illusion that there is a clear binary between disability/non-disability,
failing to recognise not only that health and “autonomy” are temporary and provisional for all of
us, but also that the binary of ability/disability is inevitably an unstable one (Goodley; Shildrick,
“Critical Disability Studies”). The trope also sets a false binary between a near-perfect prelap-
sarian state and an anguished fall after the catalytic event, and leaves no space for considering
congenital impairments over acquired. Most dangerous of all, as a narrative structure it implictly
endorses the notion that disability is synonymous with devastation and is a function of an
impaired individual body and mind, rather than a maladaptive environment that must be under-
stood intersectionally. Given these many conflicts, it may seem perverse to consider any value of
conjoining a Gothic mode and the representation of lived experience of people with disability.
Yet for the rest of this chapter I will try to make a case for exactly that.
Stigmaphilia in a minor key: uses of the Gothic

The term “stigmaphilia” gained currency in the early years of queer theory, when Michael
Warner used the term to describe a defiant embrace of a stigmatised position without acceding
to pressures to make that position more conventional, “finding a commonality with those who
suffer from stigma, and in this alternative realm to value the very things that the rest of the world
despises” (43).The work of Warner, Eve Sedgwick, Judith Butler, and others sought to recuperate
the abject, taking stigma as a starting point for subversive, collective political action. Sedgwick
and others use “queer” rather than “gay and lesbian” partially to denote how these moves are
not only about resisting stigmatised alienation as an endpoint, but actually marshalling it for
transformative action; not only converting shame to pride, in other words, but also challenging
normative social assumptions around monogamy and reproductive futurity, for example. This
process is not about desiring stigma per se, but rather about occupying stigmatised positions in
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the spirit of transformation, creative new solidarities, and subversive joy. Sedgwick, for example,
observes that stigmatised queer experience is “a near-inexhaustible source of transformational
energy,” with “experimental, creative, performative force” (609; cf. Butler). As Heather Love says,
with some ambivalence, “Although Sedgwick contrasts queer politics to blandly affirmative gay
politics, her own discussion of the term ‘queer’ rests on an ‘affirmative reclamation’ ” (106), as
such, this work is about “transforming the base material of social abjection into the gold of pol-
itical agency” (18). More recently, a similar alchemy is invoked in contemporary “crip theory”
(McRuer 35–36; cf. Chen et al.), which adopts queer theory’s deconstructive strategies and
stigmaphilic solidarity in the service of challenging not only social conventions but also dis-
ability studies’ own orthodoxies.
Yet this defiant alchemy may at times require a forgetting. As Love warns, “The premium
on strategic response in queer studies” (and I would add, some strands of disability studies) “has
meant that the painful and traumatic dimensions…have been minimised or disavowed” (3–4).
She continues:
I am concerned that queer studies, in its haste to refunction such experiences, may not
be adequately reckoning with their powerful legacies.Turning away from past degrad-
ation to a present or future affirmation means ignoring the past as past; it also makes it
harder to see the persistence of the past in the present. (19)
While respecting how affirmative approaches are of enormous value, Love argues that we must
not let suffering be forgotten within these labours: we need “a politics that allows for damage”
(162). Anything less than that means forgetting that suffering is not just personal, but histor-
ical and social; that trauma, for example, is not just a personal experience but also “a name for
experiences of socially situated political violence” which continues to reverberate in the present
(Cvetkovich 3). Sara Ahmed warns:
Ethics cannot be about moving beyond pain…without imposing new forms of

suffering on those who do not or cannot move in this way…These histories have not
gone: we would be letting go of that which persists in the present. To let go would be
to keep those histories present. (216–17)
At times, an affirmative imperative can lead to a state which Deborah Steinberg has, in a different
context, called the “I estranged” (123), a profound denial of the reality that loss, grief, and mys-
tery can be part of disability or chronic illness experience.
So in discussing Gothic in representations of disability with illness, I propose the concept of
“stigmaphilia in a minor key.” This is not a counter-definition to the transformative processes
McRuer, Warner, and Sedgwick celebrate, but is rather a shift in emphasis, in register. In its
minor key, stigmaphilia is oriented less towards the telos of transformation, and more towards
the initial stage of dwelling with distress. The musical metaphor invokes the way that music in
a minor key connotes sadness, grief, and a dying fall. I suggest such stigmaphilia in a minor key
can describe a writerly affiliation, a writing craft that deliberately draws close to the textures of
pain, shame, and wounds, both stigma and stigmata. It can also describe readerly positions, such
as Love’s own queer historiography. I find stigmaphilia in a minor key in a wide range of con-
temporary writers of poetry and prose, including Danielle Pafunda, Leslie Jamison, Christine
Friedlander, Johanna Hedva, and Sonya Huber. While all these writers differ in important ways,
each at times uses an anguished, claustrophobic, and tortured register to offer a kind of night-
mare realism, an accurate comment on the effects of intersectional structural marginalisation
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Sara Wasson
and/or impairment. As I say elsewhere, there is value in capturing the affective labour of endur-
ance, understanding “the present as not yet an event but rather a suspended impasse, a waiting
and reaching, within a…particular…social and medical milieu” (“Before Narrative” 5). In
valuing the initial dwelling with the image of wound, of unfinished injury (including from
socially inflicted suffering), I am arguing here that valuable work is done by representations of
time frozen and interrupted, images of impasse, stasis, and repetition.
In the context of disability representation, making space for dwelling on particular kinds of
disorienting subjective horror can be important in two ways. Gothic’s preoccupation with dis-
tress can itself be a useful counter to forms of positivity that can lead to excluding some people’s
experience of disability and chronic illness. Furthermore, since the Gothic is characterised by
specific idiosyncracies of space and time, it can be deployed as a highly situated mode indicting
particular maladaptive environments and the suffering which these spawn.
Disability studies has a deep investment in speaking of impairment in ways that are either
neutral or positive, and of focusing on the causes of suffering as social rather than personal.
A clear distinction between impairment and disability is central to the social model so influ-
ential in founding texts of disability studies (Oliver). Yet it is increasingly recognised that
if bodily impairment and suffering are elided from disability studies, then certain people’s
experience will also be marginalised. Liz Crow was one of the first to make this argument,
warning that while the social model has transformed and indeed saved lives, the orthodoxy
of disability positivity can lead to dangerous erasures of people with particular experiences
of impairment:
The experience of impairment is not always irrelevant, neutral or positive. …Many of

us remain frustrated and disheartened by pain, fatigue, depression and chronic illness,
including the way they prevent us from realizing our potential or railing fully against
disability…we mourn past activities that are no longer possible for us. (4–5)
Similarly, Susan Wendell affirms the social model’s refusal to equate disability and illness, yet
warns that the two categories may overlap for some people in ways that require us to recognise
impairment in terms that may well be negative, and illness and disability can coexist. Wendell
differentiates “healthy” and “unhealthy disabled,” and describes multiple kinds of alienation that
can develop between the two groups. People living with disability and chronic illness may
be engaged with medical treatment, may wish for medical cure, or may have disabilities that
are unpredictable and invisible, and may thus be seen as less credible –not only by healthcare
practitioners, but also by fellow disability activists. People with disabling chronic illness can feel
enormous pressure to deny suffering, impairment, and grief. Efforts to nuance the social model
with recognition of embodiment have continued. Alison Kafer’s “political–relational model,”
for example, echoes the social model in the way it continues to see the disability as caused by
maladaptive environments and a stigmatising society, yet resists a sharp distinction between
impairment and disability, understanding both impairment and disability as social and refusing to
erase “the lived realities of impairment,” including the possibility of mourning (6–7). Similarly,
Margrit Shildrick describes critical disability studies as emphasising “a new focus on the signifi-
cance of embodiment; an awareness of the workings of the cultural imaginary; a deconstruction
of binary thought in favour of the fluidity of all categories; and a recognition that emotion and
affect are as important as the material aspects of life” (“Critical Disability Studies” 32). Drawing
on queer theory and other theoretical traditions inflected by post-structuralism, approaches
such as these share an interest in deconstructing binaries characteristic of ableist and of disability
studies discourse, while remaining committed to social reform.
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Within a purely social model of disability, distress about impairment may be read as false
consciousness, as a person failing to understand that their distress is not due to the impairment
but rather to a hostile and stigmatising environment and psycho-emotional disablism, leading to
internalised stigma.Without a doubt, this is a common reality.Yet seeing all such distress as “false
consciousness” would be highly problematic, in that it would explicitly delegitimate the lived
experience of particular people who are already highly marginalised. This is particularly salient
in the case when disability coincides with chronic and invisible illness. Havi Carel and Ian James
Kidd observe that many such patients already undergo “epistemic injustice” in healthcare, being
seen as non-credible sources with regard to their own condition (529). With some people’s
distress already marginalised in this way within medicalised frameworks, it is a bitter twist
if disability studies discourses repeat that erasure. At such moments, a mandatory positivity
within disability discourse would inadvertently reinforce a damaging element of medicalised
care cultures. Any such parallel is of course deeply ironic, since the positivity of disability studies
is necessary specifically to resist medicalisation of impairment.Yet the fact remains that positivity
is also central to the idealised affective proprieties of neoliberal patienthood, which involves
particular affective imperatives for the ill. A “positive attitude,” ranging from faith in a cure to
positivity in daily self-management, is held up as both enhancing health and morally laudable
(Jain; Ehrenreich; Steinberg; Wasson, “Before Narrative”). While such affective discipline can be
helpful for many, at times its price can be estrangement from the “surreal” registers of the body,
in Nancy Miller’s phrase, in which we may doubt our experiences and feel required to suppress
distress (208–9).
These texts are not only valuable for the way in which they flout the positivity imperative
that continues to (rightly) characterise much disability studies analysis.They can also be effective
in communicating social injustice. Since the Gothic is characterised by confined spaces and
disjointed temporality, it can actually be deployed as a highly situated mode lending itself well to
indictments of specific maladaptive environments and the suffering they spawn. The disjointed
temporalities of a Gothic mode can be apposite for temporalities that can characterise disability
and chronic illness, and Gothic representations of claustrophobia and confinement can be apt
spatial tropes for describing experiences as mobility restriction in insufficiently adapted built
environments, or being immured in Kafkaesque systems for verifying welfare eligibility under
neoliberal austerity protocols, or the experience of being contained –even surgically reshaped –
within medicalised frameworks of care that pathologise difference.
Vampires, live burial, and flesh-made cloth

Next, I will briefly discuss several texts which deploy a constellation of Gothic tropes and a
preoccupation with impasse and strange movement in time. In such cases, the Gothic triad of
confined space, disjointed temporality, and distressing emotion is deployed here not (only) to
express hidden anxieties of a culture, that traditional anxiety model of Gothic criticism, but
rather as a productive and speculative mode, formulating visions of the human and social (dis)
connection (Hurley 6; Wasson, Transplantation Gothic).
Ellen Samuels draws on imagery of the living dead to describe her experience of living with
the genetic condition Ehlers-Danlos syndrome, in which the collagen throughout her body
is fragile, affecting all her organs, tissues, skin, giving rise to permanent pain and an unnatural
appearance of youth. She is a disability studies scholar, and she challenges the imperative to
celebrate that continues to be an important strand of disability studies rhetoric. In particular,
she wishes to explore the temporal aspects of her experience of both disability and of suffering,
and she does this by glossing six negative dimensions of “crip time.” “Crip time” has become a
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precious and familiar term among many of us living with disability.The term originated within
disability communities to describe the way things take longer with disability due to disablist
barriers, impairment, and other obstacles. The term has also taken on an additional dimension,
to challenge assumptions around accelerated society and normative futurity (Kafer). Samuels
cherishes these transformative meanings of crip time, but also wishes to speak of the more dif-
ficult aspects of time, as she lives it. To that end, she offers supplementary definitions: crip time
is “time travel,” “grief time,” “broken time,” “sick time”, “writing time,” and “vampire time.” As
part of her challenge to affective propriety, she implies an identification with an iconic Gothic
monster.
While the monster trope has almost always been used to radically “other” people in deni-
grating ways, it has occasionally been used to more positive ends, particularly in the first person.
Garland-Thomson, for example, takes this stance when she writes, “Those of us who have been
known since antiquity as ‘monsters’ and more recently as ‘freaks’ defy the ordinary and mock
the predictable, exciting both anxiety and speculation among our more banal brethren” (“From
Wonder to Error” 1). Here, Garland-Thomson celebrates somatic and cognitive uniqueness
from a position of agency. Yet Samuels’s essay uses a monster trope not to celebrate, but to
mourn. Samuels writes that she inhabits:
vampire time…the time of late nights and unconscious days, of life schedules lived out
of sync with the waking, quotidian world. It means that sometimes the body confines
us to a coffin, the boundary between life and death blurred with no end in sight. Like
Buffy’s Angel and True Blood’s Bill, we live out of time, watching others’ lives continue
like clockwork while we lurk in the shadows. And like them, we can look deceptively,
painfully young even while we age, weary to our bones. (para. 25–28)
Here, intertextualities of popular Gothic and images of atavistic monstrosity combine to convey
a present, past, and future made unstable, in temporal disjunctures of impasse, freezing, repe-
tition, and curse. In Samuels’s prose, the characteristic spaces and temporalities of Gothic are
bent to describing body as dungeon, and time as living death. This is stigmaphilia in a minor
key, representing agony without moving too quickly to emphasise its transformative potential.
My next examples come from Deborah Padfield’s collection of short prose reflections
from people living with chronic pain, often alongside disability. The prose appears alongside
photographs co-created with Deborah Padfield. I will consider several excerpts that draw vari-
ously on the tropes of live burial, a body transforming into cloth, and a self becoming spectral.
Almost invariably showing glimpses of partial bodies or objects suspended in a black field, these
images communicate fragility, isolation, and grief.Yet these extracts do not inevitably call forth
“personal tragedy” interpretations of an individual disabled due to bodily impairment, but also
describe social isolation within maladaptive environments.
Contributors Stephen Dwoskin and Patrick Dixon draw on the image of live burial in
concrete to describe their experience of physical pain, their social isolation, and their deep dis-
tress (Figure 6.1). At first, the trope of live burial is deployed to describe physical experience.
Dwoskin says his condition feels like “cement being poured down my throat and filling up my
body and I can’t stop it,” and Patrick Dixon uses the metaphor to describe radical limitations to
movement: “slowly it sets and then you cannot move” (Padfield 108, 81).Yet for both, the meta-
phor of live burial rapidly morphs to convey not only a physical experience, but also a social
plight. Dixon suggests, for example, that his concrete imagery also stem from living in a city
ill-adapted for mobility: “It is as though the buildings are closing in, like the density of mixed
concrete pouring. The density is not liquid, but solid” (108). Ultimately, the trope of live burial
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Figure 6.1 Deborah Padfield with Patrick Dixon from Deborah Padfield (2003) Perceptions of Pain.
Stockport: Dewi Lewis Publishing: p80. © Deborah Padfield, reproduced by kind permission of
Dewi Lewis.
comes to signify social exclusion. Dixon continues, “I was trapped in a black isolated space –
no one could be in it with me… .That cement suit is me” (108). These are funereal structures,
marmoreal, but they describe not an ending, but an ongoing state of impasse and stasis. The
Gothic imagery not only communicates distress, but captures the affective toil of enduring an
insufficiently accommodating space and society.
Nell Keddie and Padfield co-create several images to communicate Keddie’s experience of
living with pain from a crushed lumbar spine, facial pain, and disturbed sensation. She describes
her back pain in terms of shadows and broken glass (Figure 6.2): “Glass breaks. …Can you
pick it up, piece it together again? Leaving it there is terrible. Glass is very difficult to put back
together again” (118). Keddie is not despairing, and is fortified by turning her pain experience
into creative work. Yet despite her readiness for transformation, her words and images do not
wholly forsake the place of pain. This, too, is stigmaphilia in a minor key. Overlaying images
of Keddie’s body with shadows and fractured glass, Padfield and Keddie communicate invis-
ible injury, marked on her skin in traces of light and shadow. As her image sequence progresses,
the fragmented glass fractures even more minutely, multiplies and spreads, ultimately obscuring
much of her flesh.
To communicate her experience of facial pain and disturbed sensation, Keddie represents
her skin and subdermal tissue as dead or unnaturally transformed (Figure 6.3): “it is as though
I can’t feel the flesh properly, as though it were not alive…as though it had gone dead…It’s
very deep, not just the surface. It is as if had turned to cloth” (113). She frames her body here
in Gothic terms of (un)death and inhuman transformation, her back broken like glass, her
face partially dead, her skin turned to cloth. These metaphors powerfully convey her sense of
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Sara Wasson
Figure 6.2 Deborah Padfield with Nell Keddie from Deborah Padfield (2003) Perceptions of Pain.
Dewi Lewis.
estrangement from her own body. Yet her imagery also achieves something else, for she looks
back at us from within the image. In Staring (2009), Garland-Thomson describes the inter-
section of stare and starer as a complex dynamic within which the staree is not passive, but
an agent, with a potential multitude of strategies for choreographing the encounter. Keddie’s
image conveys some of this agency on the page in her direct gaze back to the camera.Yet the
twist in Keddie’s image is that her image modification has placed one of her own eyes within
the Gothicised cloth-space of her face. As such, she gazes back at the viewer from within
a wound, an impairment, which she has chosen to make visible. In other words, this digit-
ally manipulated image confronts us from her position within that impairment. She claims
our gaze, confronting us from her felt position, and from within the ways her life has been
affected not only by the bodily change she experienced but by the social environment which
has shaped how that bodily change has come to restrict her. She stares out from within the
changed flesh. Her gaze claims recognition of both her suffering and her agency, but without
erasing the pain. This is stigmaphilia in a minor key.
In closing, a thought about ghosts. Disability studies criticism has a tradition of invoking
spectres to describe scholarly transgression and power. As McRuer observes,
some of our most cherished theses demonstrate how invested we are in haunting. …
Absences that are somehow preternaturally present…academics startled by us or
refusing to acknowledge our existence –we like, in short, to do the haunting. (199–200)
Yet like any human endeavour, disability studies is also, inevitably, haunted, in the sense that past
human suffering shapes it in ways that cannot fully be witnessed or seen and yet which continue
to be highly salient in the present. This is one of the senses in which Jacques Derrida speaks of
ghosts, in his call for us to be willing to be haunted.
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Figure 6.3 Deborah Padfield with Nell Keddie from Deborah Padfield (2003) Perceptions of Pain.
Dewi Lewis.
No justice…seems possible or thinkable without the principle of some responsibility,

beyond all living present, within that which disjoins the living present, before the
ghosts of those who are not yet born or who are already dead, be they victims of wars,
political or other kinds of violence…
(Specters xix)
Derrida insists that this work must always be understood as both impossible and incomplete,
an imaginative movement that is simultaneously yearning without colonising, a move which
does not cease reaching for the other, yet simultaneously “leaves the other alone, outside, over
there, in his death, outside of us” (Mémoires 35). In his epilogue to Crip Theory, McRuer recruits
Derrida to his closing call for us to imagine a celebratory transgressive futurity, one in which
crip and queer lives are no longer constrained or limited by normativities (208). I wholeheart-
edly echo this call.Yet what is downplayed in that epilogue is the grief that remains at the heart
of Derrida’s model of spectrality (cf. Harrison; Wasson, Urban Gothic 159–62). Such emotion
continues to sit uneasily with much work of disability studies, both past and present.
Disability and illness are not the same thing, and neither inevitably involves suffering. But
sometimes they do coincide, and we need to continue to foster critical frameworks that can
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recognise and respond to the subtleties of those conjunctions. Gothic textual devices and inter-
textualities can support efforts to problematise divisions between disability and impairment,
and to critique elements of the care context that characterise the experience of many people
with disability and chronic illness. Gothic’s negativity can communicate damage wrought by
structural exclusions afflicting those with disability or chronic illness, including the institutional
contexts that find one’s experience unintelligible and the economic pressures that render life
precarious, and it can transgress established discourses of sanctioned affect in disability represen-
tation, without eliding the still-present “ruined state of the social world” (Love 27). That is
stigmaphilia in a minor key. Distress can be read not in terms of moral failure or personal
tragedy, but as a social index to a wider exclusionary biopolitical environment. For many are
indeed rendered spectral, strange, or sad.
Note
1 This research was supported by the Arts and Humanities Research Council (grant number AH/P015085/
1), as part of the research network “Translating Chronic Pain.” I would also like to thank the University
Santiago de Compostela in Spain, where part of this chapter was presented as a plenary address at the
“Discourse of Identity II” conference in June 2016, and Manchester Metropolitan University, where
part of this paper was presented as an invited talk.
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7
CONTEMPORARY HORROR
AND DISABILITY
Adaptations and active readers
Petra Kuppers
This chapter engages with disability-focused writing with an emphasis on the recombinant
pleasures of genre –what working in a genre framework can mean, can add, and can subvert –
stepping outside the box and examining what is in it. The argument will focus less on well-
rehearsed arguments about the conservatism of horror’s examination and fear of otherness, or
of Gothic returns of repressed fears. Instead this chapter investigates how contemporary horror
texts adapt and play with old stereotypes of disability (as well as colonialism, race, and gender),
in experimental ways.
Science Fiction/ fantasy/

horror can do that kind of disorientating shifting with
anything: politics, culture, race, power, sex, sexuality, gender. That’s the stuff I find
interesting. It’s in the nature of the genre to allow one to step outside the box and
examine what’s in it and think about what might be excluded and why. Any lit-
erature can do that; it’s just a particular hallmark of fantastical literature. –Nalo
Hopkinson, 2005.
(quoted in Simpson 96)
Many disabled people write horror, although few are systematically collected under that cat-
egory. While there are anthologies of disabled people writing science fiction (see Allan and
al-Ayad), the even more specialized niche of horror holds no such collection at this point.
Personally, I see disabled horror, fantasy, and sci-fi writers regularly at national conventions
(as I am one of these writers). My anecdotal experience and fieldwork suggests that a good
percentage of genre writers are disabled or speak about disability experiences when they dis-
cuss their working methods, many more than at literary-focused events. In 2018, for example,
WisCon, the feminist science fiction convention held annually in Madison, Wisconsin, had at
least four panels dedicated to facets of disability, a much larger percentage of this small conven-
tion than the equivalent figures at AWP, the Associated Writing Program’s conference, the main
literary creative writing event in the US.
So while disabled people most certainly write and read horror, there is at this moment
no substantive body of work that focuses on what the literary genre of horror does for, with,
and about disability.1 Classic horror has created disability stereotypes that the disability culture
movement pushes against: from the film Psycho (1960) to the various productions of Frankenstein
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Contemporary horror and disability
(initial book 1818, the first movie 1931), from evil wheelchair users to poor innocent blind
victims. Kathryn Allan sums up what a core mode of disability studies’ engagement with genre
writing has been: to catalogue the use of disability as a characterization or a narrative device.
She argues that:
When people with disabilities are turned into props and tropes (or left out completely)
in narratives of a collective human future, it is imperative that SF scholars begin to call
out –as we do for instances of racism, sexism, classism, and homophobia –outdated,
humiliating, and harmful images of disability.
This chapter acknowledges the importance of monitoring the social progress of genre material,
but its theoretical focus lies with the progressive and interesting contemporary uses of dis-
ability in horror. This chapter focuses on the kind of genre work that kicks Nalo Hopkinson’s
box down and wheels over it. If the science fiction genre is concerned with futurities, horror
pleasures rely on intensity and stimulation. To parse out who is actually alive at the end of a
horror genre product might not always be the best guide to that intensity. I focus less on horror’s
narrative plotting of disability, and more on the accumulation of sense and thrill at the site of
disability plot points.
In particular, this chapter investigates adaptations in horror genre spaces: repetitions with a
difference, surface play with plot elements that engage with or overshadow the deep psychology of
realist writing. Adaptation is central to cultural pleasures: books, dramatic texts, films, often take up
earlier storylines and play with them, twist them, subvert them, or add to them. So in the texts I am
looking at in this chapter, older discursive structures become fodder for new meanings: monsters,
asylums, lesbian vampires, and Victorian transgressive sexualities enter into play.
I am interested in aspects of genre writing –communal writing, writing-on, play with
topoi –the kind of textual productions that restructure and reinvent familiar themes and topics.
With this, my argument aligns with theorized notions of disability as it appears in dis/connects,
missed translations, and trajectories of precarity, not in essential, “authentic” disabled experience
grounded in realistic representation. My argument points to the value of non-realist embodi-
ment and enmindment (two terms that point to the process-based and interactive character of
how we come to feel ourselves as bodies and as minds). In the horror genre, states of difference
can exceed or subvert what is known and “realistic” about disability and its boxes. Horror, with
its visceral appeal to affect and sensation, is a fruitful basis from which to engage in a seduction
toward non-realist othernesses as intriguing and enriching ways of being in (this or other) worlds.
This chapter is also part of a long lineage of thinking about genre and commerce within
writerly production. Following in a line of argument from Northrop Frye to Michel Foucault,
copyright scholar Mark Rose observes, “authors do not really create in any literal sense, but
rather produce texts through complex processes of adaptation and transformation” (8). Within
Roland Barthes’s framework of dispersed literary agency, the reader is the assemblage point
where multiple cultural influences coalesce:
The reader is the space on which all the quotations that make up a writing are
inscribed without any of them being lost; a text’s unity lies not in its origin but in its
destination. (148)
This chapter analyzes several key examples in detail, including a shadow puppet show at the
Dreamland Theater,Victor LaValle’s The Devil in Silver (2012), Cherie Priest’s Maplecroft (2014),
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Petra Kuppers
and Matthea Harvey and Ann Jean Porter’s Of Lamb (2011), to argue that writers and readers
consciously employ hybridity and reinvention in order to engage in genre play. As part of this,
authors and readers can co-create commentary on histories of exclusion, on agentic reclaiming
of violent, racist, ableist, misogynist, and homophobic material, adapting them to new ends.
Cthulhu and Crip Time: Dreamland Theater:

“The Language of Time” (2017)
On First Fridays, my small home city of Ypsilanti, Michigan, shares community music, galleries,
and shows in the downtown area. In July 2017, one of these shows was a partnership between
our small experimental puppet theater, the Dreamland Theater, and the Full Circle Community
Center, a local drop-in center for people living with mental illness. For this show, interviewers
for the project had visited with Full Circle and collected people’s stories to reshape them
as puppet sketches. The puppeteer organizers described their project’s intention as raising
awareness of a community that is often ostracized due to social stigma.
“The Language of Time” was the most surreal and experimental piece of the evening, mixing
the puppeteer’s aesthetic of Cthulhu-like monsters with a crip time narrative of nonlinear sen-
sory immediacy. Cthulhu is a cosmic monster created by writer H. P. Lovecraft. Lovecraft was
a racist and misogynist, and it shows loud and clear in his writings. So why do his figures get
recycled and adapted so much? Cthulhu first appeared in the short story “The Call of Cthulhu,”
published in the American pulp magazine Weird Tales in 1928. He is part of a strange cosmology,
usually referred to as Mythos, in which ancient alien gods bring interdimensional madness to
Earth: humans are strangely drawn to this way out of human words, but go mad when they
open up portals for Cthulhu. Ever since Lovecraft first wrote about the entity, authors and artists
from Stephen King to Guillermo del Toro have taken up Mythos figures –something about this
particular flavor of speculative nonhuman otherness has proven remarkably seductive over the
years, and so seems the act of writing-on, of co-creating a mythological universe across time.
In Lovecraftian words, madness is not redemptive or offers new insights into the here and
now. Cosmic madness is not the same as the romantic “madness as seer” topos so often employed
in fiction. And yet, Cthulhu madness is a form of escape, a response to the sudden opening
of confining reality toward something else. We are in a world of overwhelming dimensions,
fever or drug dreams, grandiose and colorful, swirling and moving at light speed. Whatever
Lovecraft thought he was doing in creating these monsters, he offered up a smorgasbord
of delights to contemporary writers, who gladly enter into the supposedly abject spaces of
Cthulhu’s minions: “the others,” i.e. immigrants, racialialized others, the poor. These openings
into established (racist, sexist, homophobic, abelist, classist) reality are the most seductive pull of
the Lovecraftian universe.
Crip Time is a phenomenon out of disability culture. It emerged as a communally used
term in line with many other non-modernist, nonwhite, not-center forms of temporality. In
the particular lineage I cite when tracking down a print-origin, I attribute the term to Anne
McDonald, a non-speaking disabled woman who used facilitated communication to get out
of a nursing home in the 1980s, eventually earn a degree, and become a leading part of the
Australian disability culture scene. She writes about Crip Time:
I live life in slow motion. The world I live in is one where my thoughts are as quick
as anyone’s, my movements are weak and erratic, and my talk is slower than a snail
in quicksand. I have cerebral palsy, I can’t walk or talk, I use an alphabet board, and
I communicate at the rate of 450 words an hour compared to your 150 words in a
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minute –twenty times as slow. A slow world would be my heaven. I am forced to live
in your world, a fast hard one. If slow rays flew from me I would be able to live in this
world. I need to speed up, or you need to slow down.
Crip Time has become a generative principle for many who think about nonnormative
temporalities, to the point where the term has taken off from its grounding in a particular
woman’s disabled specificity and enforced incarceration toward much more generalized
theorizations. This chapter’s engagement with horror and disability shifts the emphasis back
onto the horizon of institutionalization, and the specifics and non-general ways of being
that we as disabled people bring to the world, yet without claiming authenticity, truth in
individual storytelling.
One of the reasons why Crip Time has become so resonant for so many writers in disability
studies is its seductiveness: almost anybody in disability worlds can experience something of the
slowing or morphing of time in pain, exclusion, or isolation. To have a term for this shifting,
this difference from the norm, is a beautiful, unifying, community-building mechanism. Anne
McDonald was originally institutionalized, dehumanized, in a deeply abject place of being
denied agency.
There’s echo and communal memory, beyond individual lives and their specificity. There’s
a near mythic group identity available here, when the consensus world (and, for instance, its
regularized worktime regime) grates against disabled ways of being. So using Crip Time as a
genre convention makes sense: it holds deep resonance, and yet can be adapted in multiple ways.
The nexus of speculative horror worlding and Crip Time’s phenomenal perception allows for a
way to theorize this opening into impersonal embodiment and enmindment.
Back to the puppet show. The guarantor for communication in “The Language of Time”
is not personal realist autobiography, told by an authentic or authorized individual. Instead,
the guarantor for communication is genre play: the familiarity of tropes that connect to other
tropes, such as Cthulhu-informed imagery, the set-pieces of “being oppressed in the classroom,”
“spaceship imagery,” or “dragon stories.” These are all genre conventions, and the storytelling
puppeteer group transformed the highly individual and idiosyncratic story of the Full Circle
user into an amalgamation of unknowability and recognizability. Without “telling too much,”
there was access. In this context, genre operates as a mixing of familiar and new elements.
Although I visited with the Full Circle Community Center, I did not meet the woman
whose narrative was shared here. But community members described her as someone with
traumatic brain injury, telling a dense story of ant poison, falling down stairs, potential parental
abuse, exclusionary experiences at school, and frightening encounters with doctors. Many of
these story elements emerged in the mainly wordless show. Animal/human/monsters appeared
on the backlit screen. A dragon/snake entered, intentions unclear, but large, detailed, beau-
tiful, with cut-outs and intricate framing: a rest for the eye, rather than a narrative motor. In
another moment, the small multiple-eyed heroine was lost in a puzzle piece forest, something
that to members of disability culture can read like a comment on Autism Speaks iconography
of missing puzzle pieces, presenting autistics as damaged people. Here, instead, the heroine’s
shadow puppet was caught in normative puzzle worlds, walking through the forest without a fit,
imprisoned by puzzle pieces. But mobility returned, in the shape of flying pigs with translucent
ears/wings. They accompanied the emergence of Cthuthlu: a big-headed creature with mul-
tiple eyes and octopus tentacles, quite recognizable to genre-fans of Lovecraftian horror. Escape
was at hand: the pigs and the heroine run into a flying saucer spaceship, and take off.
Patrick Elkins, the puppeteer, described his experiences working with the woman’s narrative
to me: how he first heard the interview about her life, and how he was captured by the sense
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of time developed here, out of normal time frames. He didn’t use the term “Crip Time,” but
when I offered it, he found the concept a fitting one: traumatic brain injury and mental health
difference as a different form of living in time, telling stories, sharing circles and lines. He also
told me that he met the drop-in user later, and that she had seen his adaptation of her story, and
enjoyed the silhouette narration.
When I watched “The Language of Time,” I did not see a woman’s authentic experience,
narrated in realist terms, then transformed more or less faithfully into shadow puppets, then
received by me with my mind full of Cthulhu and Crip Time. The puppets left authentic
grounding behind, but without denying the pain of institution. Coherences emerged, an
escape narrative, a trajectory away from the certainties of this world. There might be a star-
ship. There might be pig helpers. This is the delicious narrative I choose to take away from
this show, and from this particular engagement of puppetry horror with disability. Cthulhu
is well up for crip reclamation. In the weft spun by the Dreamland Theater’s engagement
with non-realist embodiment and enmindment, horror adaptations offered disability an open
field of associations, not just the often depressing realities. The puppetry show’s adaptation
of familiar motives, from Cthulhu and flying pigs to puzzle pieces, allowed for a sense of a
woman’s lived experience, without the constraints of realism, linear storytelling, or empath-
etic identification.
New entrances into the asylum: Victor LaValle’s The Devil in Silver (2012)

My next example of horror and disability shifts from life-writing discourses of authenticity,
surrealist engagements, and impersonal embodiment to the remediation of a particular topos of
horror literature: the asylum or the psychiatric institution. In this example of genre manipula-
tion, African-American author Victor Lavalle creates literary fiction that is consciously aware of
its meta play with language and convention.
In the novella The Ballad of Black Tom (2016), LaValle takes one of Lovecraft’s most overtly
racist stories, The Horror of Red Hook (1927), and transposes it, reversing the gaze. Where
Lovecraft had Harlem as the site of horror and black/foreign threat, with white Brooklyn and
Chelsea as the threatened centers, now an African-American narrator and musician tells of the
racist and dangerous world he encounters once he leaves his home in Harlem in the 1920s –
white people, and white police in particular, are the violent and unpredictable enemy, not
the madness-inducing thing on the threshold, the Mythos creature. This kind of imposition
and mirroring of space also occurs in LaValle’s asylum novel, The Devil in Silver (2012), where
police violence is also at work. We first encounter the protagonist of the novel on a threshold,
in the moment of entrance. Pepper, the white working-class protagonist, is becoming a mental
patient, delivered by police to an inscrutable maze, an asylum. At the entrance to the asylum,
status shifts: Pepper goes from being someone with rights, a key, access to YouTube and phones
to someone drugged, labeled, whose every utterance becomes a symptom. The staff change,
too as they work in the hospital –no one escapes the inhumane regime of the institution. Over
the course of the novel, the dangers of neglect and institutional violence are at least as real as
the story’s monster.
Adaptation and recycling of narratives are central to the novel’s form and audience address.
In disability scholar Michelle Jarman’s engagement with the novel, she excavates a haunting
encoded in numerical patterns. She describes a particular scene from LaValle’s text in which
police storm the asylum which is, at that moment, in violent upheaval, and end up shooting
Kofi, a Guinean immigrant: “The rest (of the police officers) fired on the crazed man. Then
the cops fired forty-one shots. The assailant was hit nineteen times” (210). Jarman argues that:
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The specific details, forty-one shots, hit nineteen times, directly reference the infamous
police shooting of Amadou Diallo, an unarmed West African man who was gunned
down in the doorway of his Bronx apartment in 1999. (166)
Jarman’s link to this murder provides a ghostly, haunted terrain (what she calls “reanima-
tion,” staying firmly in the territory of the horror genre). This terrain marks racialized (police)
violence’s deep time strata as an undercurrent of New Hyde, the asylum of the story. Jarman
analyzes this coded genre-play through a lens of alliances and recognition of parallels:
LaValle’s reanimation of Diallo’s shooting implies that the coercive, violent logics, so
easily concealed in the confines of the locked ward, are mirrored and active on the
street. …Pepper realizes anyone in the asylum could be produced as demonic. This
realization reorients him toward the other inmates, not through identification but crip
affiliation. (167)
This reorientation, Jarman argues, presents the white narrator of the novel with an opportunity
to unlearn his white masculinity, and to find his way to “relational resistance,” in allegiance and
friendship with other inmates, even in the absence of identification.
Building on Jarman’s insight, I want to engage with another aspect of the novel’s play with
horror conventions: the use of an unreliable narrator, and its effects on authentic representation
and narrative trust. LaValle’s novel presents readers with unreliable narrators, with undecidable
states of consciousness. To use the parlance of a classic novel set in an asylum, Ken Kesey’s One
Flew Over the Cuckoo’s Nest (1962), here the “chronics” are engaged in storytelling, not the vol-
untary admittances. Everybody with narrative weight in LaValle’s story is on the closed ward
against their will, under observation, drugged, in restraint, under lock and key.
Pepper, a thirty-something white working-class character, is the main focal point of the
third-person narrative. As he finds out, all stories are shaped by differences between internal
and external worlds, and his own way of seeing himself becomes fragile, unreliable. Stilled
by Haldol and lithium, hazed and eventually physically restrained, he lives in an involuntary
holding pattern. In this set of forces, he finds a way of finding a place for himself, in between
entrances and exits, in between walls and staircases, on the other side of locks. LaValle employs
the genre conventions of gothic asylum novels, making it unclear who is “mad” and who is
not. Adapting these conventions, LaValle shifts the moments of intensity from horror gore and
angsty revalations of the relative madness status of actors. Instead, he offers readers a social field
of and feel for the “relational resistances” Jarman discusses: while the relative in/sanity status
of all involved is unclear, the protagonist reaches out and makes temporary, context-specific
allegiances. Characters operate in obscurity but with agency. At first, readers may be inclined
to trust Pepper’s self-narration too much, and assume that the presence of a character who was
“normal,” or a “normate,” in a mental health institution was a police error. But on further exam-
ination, it becomes clear that all characters in this novel are touched by a profound and complex
self-knowledge. Pepper shifts, he becomes more interesting as he becomes less reliable. Readers
find out that his ex-g irlfriend did not see him as the kind benefactor and guardian he perceived
himself to be: he might well be a bully, violently erupting too quickly.
Following the labyrinth of the asylum’s maze to its heart, readers encounter a stairwell with
dismantled stairs, an austerity-diminished forgotten prison, in which the Devil dwells: either a
neglected son, a Bison-headed mythical creature, or a killer. The Devil in Silver is a horror story
with werewolf elements, but the locus of real cruelty is somewhere between the Kafkaesque
machine of governmental neglect and the everyday dismissal of humanity that characterizes
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institutionalized mindsets. Madness, per se, is not the threat, and, with access to appropriate
medication and regimes, people diagnosed with various kinds of mental health difference can
be seen to flourish.
One of the inmates, Xiu, or “Sue,” a Chinese woman brought into the asylum due to immi-
gration policing and a lack of access to the lithium that she requires, miraculously finds access
to the outside. She is reunited with her sister, with help, love, a regulated life, and access to her
medication. So she thrives. Balance is possible. Likewise, a second character, Looshia, a young
black woman, finds her way out, against all odds and against realist conventions: who needs
them? Certainly not characters in revolt against racist and ableist conventions. Genre narratives
can open up new escape paths, and new allegiances between characters.
Literary resources are key to helping disability culture members be connected to an
inhospitable world, but even though I teach the topic often, I have found few literary texts
that use speculative means to approach the asylum as anything but a site of horror and con-
striction. While LaValle’s text offers these tropes, as well as well-rehearsed spatial narratives
of the asylum as a place of hiding holes, gothic parallel worlds, and architectural secrets, he
also offers respect and friendship for mad people –they are not the foil for his narrative, but
the agents of change and shifting thresholds. The conventions of mad house narratives and
the employment of unreliable narrators make identification complicated and challenging.
That undecidability is the core pleasure of the book’s audience address and engagement of
disability. In The Devil in Silver, literary engagement with the crafts of viewpoint creates a
new perspective on the horror site of the asylum.
Horror hackery: Cherie Priest’s Maplecroft (2014)

The next example of horror and disability engages with the mainstream of genre fiction, out-
side the self-conscious literary realm. Here readers can find the lesbian, and the crip, all steamy
in a fast and furious narrative push that sustains itself over multiple books, a common feature of
genre literature. In my argument here, I want to bring out how different textual consumption
patterns can offer openings for disabled (and queer) readers, for the kind of active reading strat-
egies that have been at the heart of feminist engagement with literature, claiming ground by
reading for pleasure and survival, even in compromised patriarchal frameworks of production
and consumption.
In Maplecroft: The Borden Dispatches #1 (2014) US novelist Cherie Priest remediates
a celebrated murder case, Lizzie Borden and her murdered family in 1892 in Fall River,
Massachusetts. The murder site is not far from Lovecraft’s Rhode Island, and many Lovecraftian
elements appear in Priest’s novel, like morphing land/sea creatures and “unnatural desires.”
Interest in the historical figure of Borden as potential axe murderer has never really abated, and
even during the time of my construction of this essay, an internet meme based on her circulated
in my social media world. The meme from July 2017 presents a black square with white letters,
spelling out: “Do not accept a request from Lizzie Borden. You will get hacked” (I cannot
trace an origin point: that’s the point of memes). This meme plays on the multiple meanings
of hacking: hacking with an axe, and the internet-related practice of hacking into an account,
taking it over. As a meme, this Lizzie Borden tile plays into the trope of violence and personal
erasure in the ambivalent encounter-space of social media. These tropes, violence and (gen-
dered) erasure, are also at work in Priest’s novel, taking over an old murder story.
In the Priest novel, we read this delicate description of Lizzie Borden’s sensorium, her per-
spective on tiny gills, knife slits, bodily openings, very differently coded from “hacked to pieces.”
These openings are on the white neck of a lesbian adventuress actress, lover of Lizzie Borden:
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“What was that…?” I asked quietly, holding her chin aside, stretching her neck.
There: a small slit of skin, fluttering. As light as if it’d been cut with a razor, a tiny
fillet of flesh that wrinkled when I touched it. I felt the two more horizontal flaps
before I saw them. That made three altogether, with the start of a fourth, not quite as
long. …All of them sucked shut against her throat, lying so flat that if I hadn’t known
they were present, I would’ve never noticed them. I tried to touch them again, but
felt almost nothing.The faint texture of paper cuts, or maybe the delicate, almost-not-
even-there-ness of a small fish’s fins. (Priest 315)
Queerness and disability mix intriguingly in this post-Lovecraftian pastiche. “Fillet of flesh”
speak to consumption, to eating, certainly a possibility in this New England world in which
fishing is a subsistence economy. “Razor” and “cut” –the axe and what it stands for, mutilation
and murder –are not far away from this reference field, but they are coded differently, with a
different kind of trans-body status. The not-quite-there-ness of the delicate touch chimes well
with the status that lesbianism is afforded in this novel, set in 1895 –the novel bosom-heaves
with references to loves that dare not say their name.
Writing and seeing emerge as connecting techniques in multiple ways. There are various
author figures in this mainly epistolary novel (echoing both Bram Stoker’s Dracula’s set-up,
and the structure of many Lovecraftian stories, where scientists record their findings in field
notebooks). Not seeing things right in front of one’s face is a feature of this particular Victorian
world. The secretive framework within which the two Borden sisters build their lives relies
on leaving well enough alone, not touching tender stuff, keeping one’s self to one’s self. Their
neighbor, Doctor Owen, once alerted to Lizzie’s lover, isn’t particularly scandalized by the les-
bian love between Nance O’Neill and Lizzie Borden, but he is also highly aware of the invisible
nature of their relationship, invisible by social need, and invisible also by self-imposed emotional
maintenance, the need for keeping it together. Emma, Lizzie’s disabled sister, has to vie with
Nance for Lizzie’s time and affection, and has little patience for their erotic shenanigans. Emma
is also leading a gender-related double life: although highly consumptive and near dead with
coughing fits and fatigue (all very sensuously described, full of Crip Time moments), she finds
a sphere of influence for herself. She has taken on a male persona, Dr. E. A. Jackson, and, as this
male authority, authors marine-biology texts and corresponds with men from all kinds of uni-
versities.This cross-gendered traffic in knowledge eventually brings destruction to the women’s
household, though –the tenderness of in-between stages, from lesbian love to male imperson-
ation, cannot withstand the blow of the axe. There is no happy ending here for tender bodies
gasping for air.Words and descriptions accumulate at the crossing points, at open cauldrons (one
full of acids in the cellar, one full of sex in the upstairs bedroom). Shape-shifting also feeds the
repeated description of the townspeople’s physical and mental “symptoms,” the novel’s nod to
the rise of historico-medical thrillers, laying out early experiments with tetanus viruses, a plot-
point of the book.
In the genre of the fantastic, this novel, like many of its Lovecraftian wayfarers, seems less
interested in just boiling the story along, but in stringing together pearls of description, generic
situations polished and shined with loving detail and sensuous wrapping. To sum up the story
as “the crip gets no love and the lesbo dies,” while accurate, does not do justice to the novel’s
shape, and the intensity of the tender set-pieces. Pure narrative analysis does not always provide
the right answer about emotional identification points and emphasis of a genre text’s universe.
As a genre novel, this book offers plenty of opportunity for what literary critics used to call
“escapism” –imagining (lesbian) romance or active (murderous) women, the thrill and for-
bidden pleasures of women’s romance consumption. Refiguring these consumptions into active
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reading strategies, and writers as collaborators in offering these gems of hacked pleasure, allows
for a more nuanced investigation of the uses horror can be put to.
When literary critic Janice Radway interviewed women about their romance reading
practices in the 1980s, she opened up reader-response territory to thinking about the active
pleasures of women compensating for a lack of agency in their lives. But she was also suspicious
of where this might lead: “the vicarious pleasure offered by romantic fiction finally may be sat-
isfying enough to forestall the need for more substantial change in the reader’s life” (118).These
issues directly impact disability and genre reading (and writing). In this analysis of Maplecroft,
I offered a pathway through a fast-moving popular culture book that traces my own reading
pleasures, as a queer disabled active reader lingering over what she wants, in a woman-authored
text that quite explicitly offers entry points for these pleasures, fully aware of the formulaic con-
nective dots of genre writing. Non-realist forms of embodiment offer anchor points for those of
us whose bodies and minds have been denigrated, put beyond the pleasure-pale by mainstream
representation. Horror and its intensities can provide rich ground for pleasure-adaptation, as one
does not have to figure out how these intense creatures make a life in the “real” world. We’ll
just hack our way in.
Erasure pleasures: Matthea Harvey and Amy Jean Porter’s Of Lamb (2011)

To close my argument about horror’s capacious disability engagement through adaption, I’ll
focus on a very different text, of a more experimental lineage. Of Lamb (2011), by Matthea
Harvey and Amy Jean Porter, uses erasure procedures on a historical text, A Portrait of Charles
Lamb (1983) by Lord David Cecil, combining the resulting text with paintings to create a subtle
experimental entry into the disability horror genre.
Essayist Charles Lamb lived with his sister Mary, who murdered her mother and wounded
her father in an unexplained attack in 1796. She was never prosecuted, but lived in an asylum
before being reintroduced to Charles’s household. Charles himself also struggled with mental
health difference, including alcoholism, as well as other disabilities, referenced as “a limp” and
“stuttering” in various accounts. The two stayed connected throughout their lives, collaborated
on successful children’s literary material in their own right, and socialized with famous literary
figures, including Mary Shelley, the Wordsworths, and others.
Poet Matthea Harvey uses Cecil’s twentieth-century biography of Charles, with its frequent
mentions of Mary and Lamb, and mashes the story with a well-known nineteenth-century
nursery rhyme, “Mary Had a Little Lamb,” by Sarah Josepha Hale, which tells the story of
Mary Sawyer bringing her lamb to school. Visual artist Amy Jean Porter painted images to go
with the single-sentence pages, creating a psychedelic flowing surrealist landscape around a
strange lamb: not a cuddly fluffy one, but one that looks wise and haunted. The graphic novel
proceeds by building elaborate composite images. Plants twine around Mary, the only named
human depicted, and Lamb, a sheep more than a symbol of either innocence or suffering (in the
Christian tradition). Lamb is not really cute –the animal has a facial structure more akin to an
adult sheep.The two figures develop their close relationship, full of sexual innuendo and pubes-
cent longings, with Victorian imagery of excess and shrouding: “They pin’d and hungr’d after
bod-ily joy,” reads one entry from this unpaginated book, with a heart of white hedge-roses
framing a male and female putty (prepubescent nudes with blond curly hair). At the bottom of
the image, much smaller, is Mary, in trousers, arms behind her back, and Lamb, looking curious
for what is to come.
Multiple genre memories are referenced in this image: from size-shifting Alice in Wonderland
(1865) to references of flocked wallpaper and its associations with repressed femininity. The
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book shares territory with the sexualized graphic scenes of Lost Girls, an iconic graphic novel
(initial chapters were released in 1991, with the text acquiring cult status and various editions in
the 1990s and 2000s). In Lost Girls, writer Alan Moore and illustrator Melinda Gebbie remediate
Alice in Wonderland, Peter Pan (1904), and The Wizard of Oz (1900), depicting scenes in which the
heroines meet to discuss their sexual lives and sexual abuse narratives.
In Of Lamb, the page that faces the dancing putty figures has only an abstract graphic back-
ground with the words “Who would not be curious to see the pictures?” written above it.
Bestial conjoinments, potential incestuous longing (between brother and sister, Charles and
Mary) and cross-species sexuality have no visual equivalent in the pages.This page functions like
a bedroom curtain, a common visual device in early cinema, drawing the curtains on the just
married couple. On the next page, the words “Mary and Lamb inter--twined” are transected
by the legs of the upright standing Lamb. On his back rides Mary, a long strand of material in
their respective mouths. The two strands, or twine, or ribbons, write out “Mary” and “Lamb”
above them, woven through each other (potentially referencing Mary Lamb’s sowing business,
or handfastening symbols of ribbons wrapped around the partners). The Lamb’s blue ear frames
one half of Mary’s face, and her legs are blue, the color of Lamb’s fleece, while the blush on
Mary’s cheeks is visually repeated on Lamb’s ears. The two creatures merge visually, and in their
linguistic representation.
After this uncanny mélange of erotic allusion and animal/human imagery, Lamb’s story
becomes darker, and the story that emerges speaks of pubescent angst about becoming an adult,
about anxieties about ego boundaries, and latent violence emerging.Various interpretations are
possible, given the nonlinear form of narration. Thus, the sentences on various pages read, “For
Lamb, white-faced, fettered, time was full of time.” “Lamb imagined the story of a lamb made
human.” “He was, to use his own phrase, half a man.” “A quarrel began the trouble.” “Lamb,
eyes shut, ran backwards.” And “His anxiety/a glittering chandelier/rusting in his mind.” This
deterioration of happiness and togetherness stretches over multiple pages, aligned with winter
nature imagery, and crescendos with a leave-taking. Images of transport (airplanes, coffins sailing
on water, rushing water, a carpet flowing down a staircase) prefigure separation.
Seasons, the thorns of prickly plants, the silhouette of a dinosaur: images and poetry alike
capture psychic shifts, and overwhelm the reader with an excess of imagery. The murder and
the asylum (as both Charles Lamb and Mary Lamb were hospitalized for mental health reasons)
are only obliquely referenced in these pages, even more shrouded than the fantastical human/
animal intercourse. There are references to “six weeks/in a madhouse.” Also, “I bit/my shadow/
and Mary.” And: “Haunted Lamb/sung out/shut the door, /allow me to see/organs once
more.” Later, in the description of Lamb’s reacquaintance with society, the book presents two
praying mantises, uncannily eating a winged creature between them, with the words “Face-to-
face/they ate” above, surrounded by a frame of yellow pears on tree branches.
In the last section of the book, the narrative shifts to Mary’s madness, or nervous breakdown,
and the images in this section are less nature-focused, and reference more urban (London) envir-
onments, with various architectural creations, gridded windows, and gothic churches domin-
ating the visuals. The terror of uncanny eating appears again: “Should I tell you/I watched her
eating/a bit of cold mutton/in our kitchen?” Lamb and Mary are separated here by a window,
a yellow outdoors looking in on a cooler, blue interior, with a skirted piano shape squashing
Mary, who is eating a pink “lamb-on-a-stick,” like an ice-lolly.
Mergings, anxieties, and violence all shape the different separation madnesses of Lamb and
Mary. The actual killings are not directly referenced; instead, readers witness two creatures
who are different holding each other as they pass through transformation and depression.
Remediation shapes the book’s materiality, in particular in the act of erasure. Harvey blanks out
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many of the biography’s sentences to leave a handful of words per page, and then arranges them
in careful composition with the graphic offerings. This materiality of storytelling excavates
what is unspoken, and points to the historical narrative that consists of cutting in very different
ways. Every word of the original biography, a historical glimpse into an actual historical figure,
is carefully hand-crafted, either erased or saved, and the poet rearranges, makes new, or covers
up. The act of creation is a palimpsest: it both denies and makes visible the erasures of history,
the invisibility of mad people, the constrained lives of women, the invisibility of murder victims
outsides their murderers’ narratives, and the asylum as a cut-out from society. Adaptation here
becomes an act of eating up, chewing, and changing. The horror/pleasure of Of Lamb is in its
surrealist uncovering of violence, and its play with juxtaposition. Readers become implicated
in peering behind curtains, becoming active tracers of connections and alluded reference fields.
Conclusion
In these pages, horror and writing engage at sites of disability, exposing curious and unfamiliar
shapes, combining old stereotypes and tropes into alignments that show the labor of creative
practice. The resulting readings do not offer psychological realism, or a claim to authenticity
grounded in an identity politics. Instead, a genre-based recombinant logic of hide and seek is
at play.
My local Ypsilanti puppetry show used adaptation to allow an unclear/unknowable life
narration to emerge in associations and surrealist imagery.Victor LaValle’s take on the asylum-
adapted conventions around madness and unreliable narrators shows how allegiances can be
made even in the absence of firm handles on other people. Priest’s lesbian crip scenes offered
ways of feeling one’s self sensually into remediated Lovecraftian nonhumans. Matthea Harvey
and Amy Jean Porter worked together to deconstruct existing texts, adapting them into non-
narrative collages of horror tropes grounded in actual lives. Both Priest’s popular novel and
Of Lamb’s experimental text emerge from historical events, but their respective effects are
very different: adaptations here have different horror ends, one more aligned with the genre-
reader’s pleasure seeking, one with an active reader’s excavation of uncanny openings and border
crossings. In all cases, the reader is the site of assembly: intensities emerge where reading desires
and textual offerings intersect.
Horror is an intensification machine, not only a narrative path. All of the disparate texts
I survey here align on this point: real lived disability as a secure and shared storyline is
emphatically not the point of the story. Instead, and deliciously, disability becomes a place
where violence and agencies can try out new forms of interplay, with death, sex, and flying
pigs along the way.
Note
1 For some work on other genres, see, for science fiction, the authors collected in Allan, 2013, or Schalk,
2018, for work on romance fiction, Cheyne, 2013. Existing engagement with horror and disability tends
to focus on films, see for instance Hall, 2016, on Edward Scissorhands, or Angela Smith, 2012, on 1930s
horror films.
Works cited
Allan, Kathryn (ed.). Disability in Science Fiction: Representations of Technology as Cure. New York: Palgrave
Macmillan, 2013. Unpaginated e-book.
Allan, Kathryn, and Djibril al-Ayad. Accessing the Future. Futurefire.net Publishing, 2015.
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Barthes, Roland. “Death of the Author,” in Image-Music-Text. Trans. Stephen Heath. New York: Hill and
Wang, 1978, pp. 142–147.
Cheyne, Ria. “Disability Studies Reads the Romance.” Journal of Literary and Cultural Disability Studies,
vol.7, no.1 (2013), pp. 37–52.
Hall, Melinda. “Horrible Heroes: Liberating Alternative Visions of Disability in Horror.” Disability Studies
Quarterly, vol. 6, no.1, 2016, e-publication.
Harvey, Matthea, and Amy Jean Porter. Of Lamb. New York: McSweeney Books, 2011. Unpaginated.
Jarman, Michelle. “Race and Disability in US Literature,” in The Cambridge Companion to Disability and
Literature. Eds. Clare Barker and Stuart Murray. Cambridge and New York: Cambridge University
Press, 2017, pp. 155–169.
LaValle,Victor. The Devil in Silver. New York: Spiegel and Grau, 2012.
———. The Ballad of Black Tom. New York: Tor, 2016.
McDonald, Anne. “Crip Time.” Anne McDonald Centre, www.annemcdonaldcentre.org.au/crip-time.
Accessed April 2018.
Priest, Cherie. Maplecroft: The Borden Dispatches #1. New York: ROC/Penguin, 2014.
Radway, Janice. Reading the Romance. North Carolina: The University of North Carolina Press, 1984.
Rose, Mark. Authors and Owners: The Invention of Copyright. Cambridge, MA: Harvard University Press,  1993.
Schalk, Sami. Bodyminds Reimagined: (Dis)ability, Race, and Gender in Black Women’s Speculative Fiction.
Durham, NC: Duke University Press, 2018.
Simpson, Hyacinth M. “Fantastic Alternatives: Journeys into the Imagination: A Conversation with Nalo
Hopkinson.” Journal of West Indian Literature, vol.14, 2005, pp. 96–112.
Smith, Angela. Horror Progeny: Disability, Eugenics, and Classic Horror Cinema. New York: Columbia
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PART II
Novels and short stories

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8
FROM “CHANGELINGS”
TO “LIBTARDS”
Intellectual disability in the eighteenth
century and beyond
The word “idiot” serves a powerful rhetorical function. This is the term we must use when
speaking about a person with intellectual and developmental disabilities (IDD) in the long
eighteenth century, although it is an imperfect fit. It circulates today as a ubiquitous slur, one that
is considered socially acceptable in many quarters. Calling someone an “idiot” (or a synonym)
frequently serves the triple purposes of silencing, delegitimizing, and dehumanizing. To insult
someone’s intelligence in this way is “to go for the jugular” because most of us think of ourselves
as being smart. Ridicule regarding a lack of cognitive fitness is particularly potent in the political
sphere. In the United States, some conservatives refer to progressives as “libtards” –a portman-
teau word obviously combining “liberal” and “retard.” On the other side, the left-leaning and
widely syndicated cartoonist Rall followed the 2004 re-election of George W. Bush with a strip
lampooning him and his conservative supporters as delayed learners. Polemical invective of this
sort implicitly calls upon opponents to return to private life and shut up because their poor
mental function disqualifies them from participating in public affairs.
Ad hominem political attack citing low intelligence, while certainly an old practice, is one
that gained traction at a particular point in history, and that point is roughly the time of the
philosopher John Locke. During the final decades of the seventeenth century, “changeling” was
a term carrying connotations roughly akin to “idiot,”1 and, according to social historian C. F.
Goodey, Locke himself partook in this rhetorical practice, often leaving “his reader to infer [that
his] conservative [Tory] opponents too are changelings” (324). Prior to Locke, the term “idiot”
was not as intensely pejorative as it would become. Calling someone an idiot carried less sting;
condemning someone for cowardice, dishonor, or damnation wounded more deeply. This was
so because, in matters of early modern identity, possessing intelligence mattered less than having
honor or a prospect of an afterlife in heaven. To trace how “idiot” developed into a harshly
uncomplimentary expression, this chapter will explore two interrelated developments, the rise
of the intelligence society and the progression of secular demonization as a socially acceptable
response to the cognitively “other.” A number of literary texts in the long eighteenth century
both fashioned and reflected these developments, and in this regard the current chapter will
examine aspects of William Wycherley’s comedy The Country Wife (1675); Daniel Defoe’s trea-
tise on Peter the Wild Boy, Mere Nature Delineated (1726); and Frances Burney’s novel Camilla
(1796). This chapter also will look at two texts that called these interrelated developments into
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question, Anne Finch’s poem “The Introduction” (1713) and Jonathan Swift’s satire Gulliver’s
Travels (1726/35).
Status idiocy and functional idiocy

Critical disability studies challenges us to uncover what was at stake with regard to the concept
of idiocy and to identify the purposes it served in the cultural imagination. At one time the
words “idiocy” and “idiot” together were associated with two distinct categories of meaning,
both of which entered the English language at the beginning of the fifteenth century, although
each had a separate prehistory going back to ancient times.
Looking in the Oxford English Dictionary, we find that the first sense of “idiocy” has to do
with status and is one no longer in use, having fallen out of circulation by the nineteenth cen-
tury.This signification involves social status: an idiot according to this definition was determined
to be so by his or her place in society. An idiot according to this meaning would be a private
person who was unskilled, uneducated, and/or unsophisticated and whose mental shortcoming
would be understood as ignorance (“Idiot” n.1., a, b, & c). This understanding of the term
had its roots in ancient Greek, with the original term designating a private citizen as opposed
to a public official. In Latin, “idiota” took on the meanings of “uneducated,” “ignorant,” and
“common” (“idiota”). A vestige of this first sense of “idiot” remains in William Shakespeare’s
Macbeth (1606): the titular character speaks of “a tale /Told by an idiot, full of sound and fury, /
Signifying nothing” (5.5.29–31).The “idiot” here refers to a person lacking professional training
or skill, perhaps an apprentice actor (Jarrett and Goodey 123). When Samuel Johnson in his
1755 Dictionary defined “idiocy” simply as a “want of understanding,” he was invoking this
first denotation. “Idiot” and “idiocy” were often used to speak about unskilled workers, land-
less laborers, laymen, and servants. Status idiocy carried with it the late medieval idea that the
broad population of illiterate and poor constituted an idiotic mass (Jarrett and Goodey 127).
The laboring poor of the countryside were often described in this way, a meaning that Marx
and Engels perpetuate in their phrase “the idiocy of rural life” (Tucker 477).
The second sense of “idiocy” is functional idiocy, and the word still circulates with this
meaning, although it is not considered acceptable. This has to do with a hopeless and pro-
found inability to navigate the world due to mental processing flaws, an inherent constitutional
inability to carry out basic life-supporting activities (“Idiot” n.2., a & b). This sense has roots in
the jurisprudence of the Middle Ages: G. E. Berrios writes that, in medieval court records, this
sort of idiocy was “associated with qualifiers such as congenital and irreversible” and concerned
fitness to inherit property (226).2 While it is true that this sense conveyed an abject air, confu-
sion swirled around the condition for which it stood. At the start of the long eighteenth century,
functional idiocy was not infrequently attributed to individuals living with impairments that
today would not be associated with congenital or acquired poor intellectual processing. For
example, Simon Jarrett and C. F. Goodey write that the “most extreme and enduring image
of the [functional] idiot body and its incontinence was the gaping, driveling mouth” (128).
A “driveling mouth” actually indicates something different: it has to do with the spasticity
brought about by cerebral palsy, a condition not always accompanied by cognitive impairment.
However, because cerebral palsy itself would not be named and studied until the early 1800s, it
was conflated in earlier times with functional idiocy. Similarly, those who were born blind or
deaf were generally thought to be functional idiots, although with the spread of Enlightenment
ideas these stereotypes underwent reexamination (Tunstall 79–80; Lindgren 98–102).
A striking example of lumping an unrelated impairment together with functional idiocy
is the case of Samuel Johnson, who apparently lived with Tourette syndrome, a condition not
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From “changelings” to “libtards”
identified during his lifetime (Davis 55). Johnson’s initial biographer, James Boswell, records that
the first time the painter William Hogarth met Johnson, in 1739, he saw a man “shaking his head
and rolling himself about in a strange, ridiculous manner,” and concluded that Johnson “was an
ideot, whom his relations had put under the care of Mr. [Samuel] Richardson” (255). Hogarth’s
opinion instantly changed, however; as soon as Johnson started speaking he “displayed such a
power of eloquence, that Hogarth looked at him with astonishment, and actually imagined that
this ideot had been at the moment inspired” (255). When Hogarth observed Johnson for the
first time and took him to be an “ideot,” the former mistook the latter’s Tourette syndrome to
be an abject form of idiocy. While Johnson –as well as the blind, deaf, and spastic –over time
would be cleared of the automatic charge of functional idiocy, the charge itself would gain
potency as an aspersion indicating extreme social worthlessness.
The intelligence society

By the middle of the eighteenth century, idiocy in the sense of functionality was supplanting the
meaning associated with status. It is one of the contentions of this chapter that Britain’s trans-
formation from a feudal to an emerging capitalist economy promoted the currency of “idiot”
and “idiocy” in the second sense.The impetus behind this though was more than just economic.
The rise of the new economic order was interconnected with the advent of the public sphere,
which itself was integral to a far reaching social and cultural development, the Enlightenment.
A component of the Enlightenment was the ascendance of what Goodey calls the intelligence
society. In A History of Intelligence (2011), Goodey maps out how, from the late medieval period
to the late seventeenth century, the individual’s perceived possession of intelligence rose in social
value vis-à-vis traditional status-bidding claims such as those linked with honor and lineage
(aristocratic noble birth) and with one’s state of grace –the prospect of religious salvation (103–
24, 151–78, 313–46). Along with the slow but steady transition into modernity, intelligence
began to matter more and more with regard to how power was distributed. Goodey does not
use the word “meritocracy,” but it could be argued that the origins of the intelligence society
served as the basis of democratic meritocracy, which is grounded in the ideology that the “best
and the brightest” should rise to the top of society and make the major political decisions.While
this transformation spanned beyond economic concerns, it strongly manifested itself in the
world of commerce. The late seventeenth century was the period of emerging capitalism, and
the growing bourgeoisie –merchants, international traders, and stock jobbers –were increas-
ingly pointing to their own wealth acquisition as a sign of their superior intelligence. This def-
inition of intelligence in effect allowed a larger pool of European males access to cultural (and
literal) capital, but it was strategically developed to deny other people access to power.
For the embryonic intelligence society to establish its raison d’être, it needed an “other”
against which to define itself, and this “other” was the real or imagined cognitively deficient
person: the idiot, changeling, simpleton, or natural fool. Goodey contends that our contem-
porary concept of intellectual and developmental disabilities began to take shape at precisely
the same historical moment that intelligence as a mode of social status bidding was becoming
evident; the two concepts –intelligence and intellectual disability –were “mutually reinforcing”
(1). Intelligence, Goodey argues, cannot be accepted as an unequivocal social good without
the existence of a presumed intellectually deficient other, with the latter serving as a foil illus-
trating the superior value of the former (1–2). This mutual reinforcement provided a platform
for “cognitive ableism,” which Licia Carlson defines as “a prejudice or attitude of bias in favor
of the interests of individuals who possess certain cognitive abilities (or the potential for them)
against those who are believed not to actually or potentially possess them” (140). With the
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gradual restructuring of society in the direction of privileging intelligence, cognitive ableism

became pervasive.
Accompanying the elevation of the intelligence society were two questions: who was human?
and who or what was an enemy of the human? The first question had to do with human iden-
tity: what made humans human? As Felicity Nussbaum observes of the long eighteenth cen-
tury, “the emerging standards of what it means to be human…are increasingly articulated”
(2). The late seventeenth century in particular was a period in which the notion that “the
cognitive ability of our minds [a]‌s a defining quality of our species” was just becoming dom-
inant (Martensen 144). In an era consumed by questions of the human, the idiot was viewed as
marking a boundary in the cultural imagination between human and animal. The figure of the
idiot was mobilized to demarcate the separation between a human “us” and a bestial “them.”
The second sense of “idiot” –functional idiocy –as it developed and was utilized over time,
additionally had to do with the repurposing of older methods of societal exclusion, of turning
opponents and members of an outgroup into pariahs. Old demons were being switched for new
ones. Belief in the devil was going out of fashion among the educated elite (Muchembled 4,
171; Goodey 268), and the target of scapegoating and demonizing began shifting, with a new
victim replacing the old: the functional idiot. In pre-modern times, a person or group would
mark someone as a pariah by literally “demonizing” the individual, accusing the person of not
being fully human because he or she was possessed –the devil had inhabited his or her body.
With the new order, those with diminished mental capacity were taken to be not fully human
because intelligence was more and more being recognized as a defining feature of the human.
Consequently, where once the accusation of devil possession had served religiously oriented
people as cause for a person’s ostracism, a new form of expulsion started taking its place, which
will be called here (for want of a better phrase) “secular demonizing.” With an emergent cog-
nitive ableism informing this stigmatizing process, idiocy became “the master trope of human
disqualification” (Mitchell and Snyder 3). In summary, as intelligence rose as a vehicle for social-
status bidding, people who were considered to be mentally deficient found themselves relegated
to the bottom of society. Such individuals were compared to brutes,“animals with human form”
(La Mettrie 38).This has remained true into the present day: people with intellectual and devel-
opmental disabilities continue to be, in Martin Halliwell’s phrase, the “degree zero of humanity”
(51), or, in Janet Lyon’s, “the lowest rung.”
An early surfacing of the secular demonizing trope can be glimpsed in William Wycherley’s
1675 Restoration comedy The Country Wife. At the beginning of Act Two, Alithea and Sparkish,
who are engaged, take part in a dialogue in which the former relays what Harcourt, who is also
present in the scene, has said about Sparkish. According to Alithea’s report, Harcourt had earlier
slandered Sparkish as “a senseless, driveling idiot” (2.1; 21). Because the audience recognizes that
Sparkish is at worst an intellectually shallow man, Harcourt’s characterization seems excessive.
If Harcourt had impugned the character of Sparkish to Alithea solely on the basis of her fiancé
being a status idiot, that is, a man who was out of his league with regard to pursuing her and
so should withdraw his affections, his message would have been sufficiently clear. He would
have been telling Sparkish (indirectly through Alithea) that he should retire to a private sphere
appropriate for a shallow-minded man. His use of the word “idiot” would call to mind status
idiocy. However, he chose not to stop at categorizing him as such, instead using the modifying
adjective “driveling.” This overstates the case, placing Sparkish squarely in the class of functional
idiots. Without doubt he employs the hyperbolic visual description of Sparkish as a drooling
imbecile to besmirch his romantic rival, but this caricature raises an interesting question: why
resort to such a heavy handed affront? Why must Sparkish’s idiocy be of the abject rather than
the private kind? The answer has to do with the fact that The Country Wife is a comedy of
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wit (intelligence), and in it we witness in microcosm an intelligence society establishing the

standards for who is to be included and excluded. In such a setting, a mocking gibe about a rival
not having any intelligence whatsoever is the most cutting remark that can possibly be made.
Harcourt intends to drive Sparkish off the stage in this comedy of intelligence by reducing him
to the cognitively “other.”
Harcourt’s choice of words illustrates the coming trend: as intelligence begins to vie with
the traditional status-bidding claims of lineage and salvation, accusations of mental incompe-
tence (such as that made by Harcourt against Sparkish) come to serve the objective of ejecting
targeted individuals (the Sparkishes of the world) from public space (in this case, from Alithea’s
affections). This brief exchange in Act Two forces us to speculate that the first sense of “idiocy”
(status) may have dropped out of circulation over time because the second sense of “idiocy”
(function) subsumed it. Slowly but surely the second sense may have started to signify both pri-
vate status and mental deficiency, with the suggestion being that cognitively impaired people
should hide themselves in the private sphere: they should not come out into the open and
attempt to participate in public affairs. If this speculation has merit, we can read Harcourt’s
vitriol as conveying the double-barreled insinuation that the addressee of such a slight was cog-
nitively deficient and that he should withdraw from public view.
This implication of Harcourt’s word “driveling” comes fully into the open in John Locke’s
1689 An Essay concerning Human Understanding. Locke’s philosophy regarding how the mind
works helped establish a normative standard of human mental ability, leaving anything falling
below this standard to be construed as a diminishment of fully human status (Simplican 25–46).
As such, it is a text in which the secular demonizing of the cognitively “other” is particularly
pronounced. In fact, Locke is the philosopher who poured accelerant on the idea of functional
idiocy: he greatly contributed to turning “idiot” into a vehicle for nasty verbal abuse, doing
so by frequently and derogatorily referencing the idiot’s close linguistic kin –the change-
ling. The changeling in Locke’s writing is a humanoid entity with an abysmally slow cog-
nitive process: the “drivelling,” unintelligent, intractable changeling exhibits “a defect in the
mind” and so serves as the perfect illustration of functional idiocy at its nadir (4.4.16; 571–72;
emphasis added).3 In Locke’s view, the changeling is subhuman, and, as such, instantiates the
cognitive “other,” an entity so low in standing that perhaps it ought to be obliterated ((3.6.27;
454–455) 454–55). Paul de Man notes that the way Locke presents the changeling figure
becomes “powerfully coercive since it generates…the ethical pressure of such questions as ‘to
kill or not to kill’ ” (40). This is to say that Lockean rhetoric centering around changelings
becomes so provocative that the question arises as to whether they should even be allowed to
live. Locke himself implicitly recruits the changeling figure for his polemics, for he “leaves his
reader to infer [that his] conservative opponents too are changelings” (Goodey 324).4
Daniel Defoe’s Mere Nature Delineated and Frances Burney’s Camilla

Locke’s Essay greatly influenced Daniel Defoe, who produced a detailed description of a func-
tional idiot in the 1726 treatise Mere Nature Delineated: Or, A Body without a Soul, a text in which
he takes Peter the Wild Boy for his subject. In 1725, an illiterate and non-speaking homeless
boy found living in a German forest was brought on the king’s order to the London court.
The incongruity of this supposedly wild youth in such a polite environment aroused curiosity,
comment, speculation, and amusement. In fact,“Peter’s presence in England was, as one observer
put it, ‘more remarkable than the discovery of Uranus’ ” (Candland 10–11). Peter created a sen-
sation because he was thought to be an exemplar of a wild child living in a “state of nature” –a
“natural man” found not overseas but in the heart of Europe. Seventy years later, Dr. Jean-Marc
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Itard would become famous for his efforts to train Victor, the Wild Boy of Aveyron, a process
that later came to be understood as a founding moment in the history of exceptional education.
Peter, though, was an important precursor. His education was entrusted to the queen’s physician,
Dr. John Arbuthnot (a member of the Scriblerus Club), who, in contrast to Itard, kept no notes.
A half-dozen tracts, mainly satires, soon appeared, and in the middle of 1726 Defoe published a
book-length assessment. Defoe “was unusual in taking the case seriously –his contemporaries
plainly regarded Peter as, first and foremost, a joke” (Newton 42–43). Defoe spends most of the
piece satirizing not Peter but various sectors of society, particularly the learned, who believed
they saw in the boy an instance of a human being living in a state of nature. Defoe begins his
examination by stating his doubt that a naked adolescent could survive a week in the bitterly
cold German forests, and he ultimately determines that Peter was a functional idiot abandoned
by his family. The boy’s failure to notice when he soiled his breeches indicated he was not the
exemplar many believed him to be. Swift was particularly skeptical; after meeting Peter him-
self, he dryly observed, “I can hardly think him wild in the Sense they report him” (qtd. in
Novak 139).
After meeting with the boy on several occasions, Defoe came to believe that Peter would
never be able to speak, and this factor made all the difference; in this he was following the
spirit of the age. As James Berger observes, the “impulse in Locke, Condillac, and other
Enlightenment thinkers –quite evident in most philosophical responses to wild children and
what today is known as IDD –was to regard language and socialization as the primary, or even
the sole, determinants in subjectivity” (33). Speaking coherent language was the surest sign in
eighteenth-century Enlightenment culture of full human status, and Peter, being nonverbal,
fell short in this regard. Unlike Shakespeare’s Caliban in The Tempest (1611), Peter could not so
much as learn to curse. In Defoe’s estimation, he was at best a failed Friday, the native islander
in the novel Robinson Crusoe (1719), who is taught to speak English (Calder 150–52, 167). The
title and subtitle Defoe selected for his 1726 treatise therefore are telling: Peter was “A Body
without a Soul.” At best, he was “Mere Nature,” and these choices indicate an alteration from
Defoe’s earlier thinking, for in his 1697 Essay on Projects he had rejected “the notion that ‘fools’
have no soul” (Stainton 24). But by 1726, his views had changed, perhaps under the influence of
Locke’s Essay: while he pities the boy and argues that he should be treated humanely, he seems
to have embraced a secular-demonizing view of mental deficiency, concluding that Peter was a
quasi-human figure, not a full member of the human race.
Locke’s influence as well as the tendency to engage in secular demonizing can also be
detected in Frances Burney’s 1796 novel Camilla. The titular hero’s sister, Eugenia, is beloved
by her family for her intelligence and sweetness. Through accident and illness her face and
body have been disfigured and deformed, but because the family has concealed the extent of
this aesthetic damage, she has remained unaware of this. When Eugenia eventually finds out,
she falls into a depression. Attempting to see what “reason could urge” (310), her father takes
her, in what amounts to a freak-show presentation, to view the spectacle of a young woman,
the Beautiful Idiot. Among other things, the Beautiful Idiot drools: “The slaver driveled unre-
strained from her mouth, rendering utterly disgusting a chin that a statuary might have wished
to model” (309). Eugenia quickly discerns that the young woman is miserable, one minute
throwing herself to the ground and sobbing, the next rising and bursting “into a fit of loud,
shrill, and discordant laughter” (307). She subsequently strikes “her head with both her hands,
making a noise that resembled nothing human” (310). Afterward Eugenia says, “O, my father!…
Did you lead me thither purposely to display to me her shocking imbecility?” (310).
This scene featuring the Beautiful Idiot should be read in light of the work of the moral
philosopher Lord Shaftesbury (Anthony Ashley Cooper). Writing many decades earlier, he
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contended that appealing exterior physical qualities may make an individual attractive but
that appearance was not enough: intelligence also had to be present. Just when we think we
are appreciating a person’s beauty, he argued, we are really admiring “a mysterious expression
and a kind of shadow of something inward in the temper” (qtd. in Joshua 56). Following this
understanding, people with intellectual impairments thus could never be beautiful.Their exclu-
sion from the realm of the aesthetically pleasing, according to Shaftesbury, had to do with their
lack of a moral sense. Being able to practice virtue requires “a knowledge of right and wrong”
and “a use of reason sufficient to secure a right application of the affections” (qtd. in Kelleher
79). Paul Kelleher sums up Shaftesbury’s thinking as follows: “[w]‌ithout enough reason, there is
no access to the experience of moral beauty; without the ability to perceive the moral beauty of
another’s (or one’s own) thoughts, affections, or actions, no virtue is possible” (79). Shaftesbury’s
conclusion was that, no matter how appealing his or her looks, an idiot must be considered hid-
eous: “All which is void of mind is horrid” (qtd. in Joshua 56). The Beautiful Idiot to whom
Eugenia is exposed epitomizes just this sort of “horrid” mental deformity, and Kelleher argues
that such deformed figures as this young woman served an ideological purpose: the rhetoric
of deformity “makes possible the articulation of moral systems as such” (72). The deformed –
whether in body or mind –provided a foundation for an ableist understanding of what living a
moral life entailed. The Beautiful Idiot would be incapable of living a moral life and, therefore,
was shut out from membership in the human race. Eugenia grasps the point of the lesson: after
viewing the freak spectacle she acquiesces, and her father praises her for seeing “that beauty,
without mind, is more dreadful than any deformity” (311). We as readers can infer from the
scene that Burney shared the father’s and Eugenia’s antipathy toward the Beautiful Idiot and
people like her. When this character strikes herself and makes “a noise that resembled nothing
human” (310), a reader gains the sense that she is not human.
Functional idiocy: gender and race

Locke’s changeling designation captures a broad spectrum of people, sweeping in various sub-
altern populations and all those with human shape who were presumed to lack the ability to
think abstractly. In short, “an assortment of marginalized groups…are stigmatized because of
their [supposedly] diminished human faculties” (Simplican 28). As a result, even as the intelli-
gence society was gradually changing the groups of people in power (from clerics and aristocrats
to members of the bourgeoisie), it was, in terms of race and gender, reinscribing the older power
dynamics.
Anne Finch’s “The Introduction” (composed probably in the late 1690s but not published
until 1713) contains a set of lines railing against the widespread assumption of female mental
incapacity. Since the time of Aristotle, females had been deemed to be intellectually deficient due
to their sex’s physiological constraints (Smith 467–78), and this view carried forward into the
eighteenth century (McDonagh 102–12). Finch directly refers to this supposition in these lines:
How are we fall’n, fall’n by mistaken rules?

And education’s, more than nature’s fools,
Debarred from all improvements of the mind,
And to be dull, expected and designed. (51–54)
Finch’s phrase “nature’s fools” is key because it goes directly to the issue of functional idiocy.
The common assumption was that women were born with a dispositional intellectual inad-
equacy (nature’s fools), one that rendered them cognitively impaired, making all women
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functional idiots as a matter of the ordinary course of things. Finch counters that this supposed
innate mental inferiority stemmed rather from the structural inequality inherent in patriarchy.
She protests that females are, if idiots at all, status idiots (“education’s…fools”) because social
structures have forced them to be so. Finch’s point here is that educational opportunities should
be opened to women so that they would no longer be idiots in either sense of the word. In her
view, women had not yet benefited from the newly emerging intelligence society because they
were not being allowed to join it. Finch’s protest poem indicates that, instead of casting aside
the Aristotelian notion of women’s native intellectual inferiority, the new intelligence-driven
regime was merely reinscribing existing hierarchies in order to maintain status-quo power
dynamics.
In a similar way, people of color were also presumed to be functional idiots. In Defoe’s 1723
novel Colonel Jack, an exchange takes place between Colonel Jack and a slave master in which
the former advises the latter to moderate his harsh management of African slaves (185). When
the slave master responds that kindness is lost on “Negroes” (185), Jack replies:
“It may be true, sir, that there may be found here and there a Negro of a senceless,
stupid, sordid Disposition, perfectly Untractable, undocible, and incapable of due
Impressions; especially incapable of the Generosity of Principle which I am speaking
of…if such a Refractory, undocible Fellow comes in our way, he must be dealt with
first by the smooth ways, to Try him [kindness], then by the Violent way to Break his
Temper, as they Break a Horse…” (185–86)
The racialized category of “savage” inherent in the passage’s language follows closely Locke’s
description of changelings, indicating that Locke and Defoe were tapping into a common dis-
cursive thread. The slave master lumps all “Negroes” into Locke’s classification of changeling,
while Jack, who, apprehending that Africans are “less than fully human,” is not nearly as dog-
matic as his interlocutor. Neither character, however, entertains the possibility that Africans’
incorrigibility may stem not from any supposed innate mental inferiority but from the struc-
tural inequality inherent in the condition of slavery. Thus, while the emergence of intelligence
society facilitated dramatic social change, the construct of intelligence was strategically defined
to exclude nonwhite people.
Lemuel Gulliver, cognitive ableist par excellence

In a 1725 letter to Pope, Swift protests against the “falsity of that definition animal rationale,”
redefining the human as “rationis capax,” an animal capable of reason (“To Alexander Pope”
3.103). Rationality occurs in humans only from time to time and, even then, only for brief bursts.
His formulation implicitly challenges Lockean epistemology, the emerging Enlightenment dis-
course of the perfectibility of “Man,” and the raison d’être of the intelligence society. Expanding
upon this line of thinking is Part Four of his Gulliver’s Travels. As has been argued elsewhere,
one would think that the secular demonizing of idiots that begins in earnest with the rise of
the intelligence society would find its most scathing expression in the portrayal of the Yahoos –
humanoids lacking the ability to reason. However, Swift, in a surprising move, turns the tables
by demonizing the demonizer, making the book’s self-proclaimed intelligent protagonist and
aspirant to the intelligence society, Lemuel Gulliver, the butt of the satire.
Gulliver reveals himself to be a cognitive ableist par excellence in his dealings with the
Yahoos. His secular demonization of them could not be more intense, and the heatedness of his
rejection of the Yahoos raises the question of whether they should be considered less than fully
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human in the same manner that Locke categorized changelings as not being fully human. Part
Four resists definitively answering the question of whether the Yahoos are animal or human; it
is constructed rather to force readers to confront the cognitive “other” in the Yahoo and then
ask themselves what they would do if they found themselves in such an ethically charged but
uncertain situation.The fully grown Yahoos exist –at least in a Lockean view –at the interstices
of animal and human. And yet, this very subject –the Lockean view –is what comes into
question in Part Four.
Throughout the text Gulliver presents himself as one of the new, enlightened men, a pro-
ponent of empirical science, and someone who prides himself on his intellect. However, he
cannot be taken at face value: Dennis Todd describes him as “[l]‌iteral-minded and superficial,”
someone who “travels through the world like the stereotypical tourist, staring at everything
and seeing nothing” (150). As such, Gulliver becomes the satire’s principal butt: for the dur-
ation he manifests an intellectual narcissism that epitomizes cognitive ableism. As a character
whose hubris involves intelligence, he sees in the Yahoos everything he wishes to define him-
self against. This is possible because the Yahoos differ just enough from the typical human form
for Gulliver to not be able to recognize their humanity. Later, however, under the coaxing
of his Houyhnhnm “master,” Gulliver is forced to acknowledge that he himself possesses the
same shape as the typical Yahoo (4.3, 200). He thus finds himself trapped in a Yahoo body but
yearning to join the Houyhnhnms –the cognitively developed, reasonable, and sophisticated
beings of the island. The Houyhnhnm community he wishes to join is, in fact, an intelligence
society: the Houyhnhnms could be said to epitomize the intelligence society Goodey describes.
In order to be admitted, Gulliver learns to speak Houyhnhnm and mimic both their virtues
and even their gait. But if he is to become a full member, he too must bid for social status on
the basis of intelligence, and this he cannot do. Smart in some respects, such as those involving
imitation, Gulliver is not so in others. Paradoxically, then, the more that Gulliver attempts to
emulate the Houyhnhnms, the more he thinks like a Yahoo. Having no way to join them, he
finds himself relegated to occupying the fringe of this elite society. Even so, he persists in his
attempts, and the only way he can succeed in joining is in the worst possible way, by becoming
an oxymoronic “wonderful Yahoo” –a self-admitted freak (4.3, 199; 4.9, 229).
Tolerating none of Gulliver’s ridiculous mimicry, the Houyhnhnms vote to expel him from
the island, and so he must build a boat. It is in construction of it that the killing of Yahoos can
be inferred because he employs their skins to make the sails. His tone is so casual about the
acquisition of skins that it becomes evident that he neither thinks about what he is doing, nor
knows how to think about the ethical issues that using the skins raises. This failure to grasp
what is at stake brings into the foreground a central irony of Part Four, namely, that of the
individual who aspires to join the intelligence society but who does not know how to think,
at least when it comes to thinking about ethics. This falls into line with Swift’s overall cri-
tique in the Travels: figures like Locke and Isaac Newton had established and popularized ideas
that moved society toward privileging factual knowledge and scientific progression but not
toward achieving greater moral understanding (Kiernan 711). As the butt of the satire, Gulliver
is rendered by Swift in such a way as to epitomize this lack.
There is much more evidence to examine with regard to the way that Gulliver’s thinking
process falls short. Gulliver is quick to engage in the secular demonization of the changeling
Yahoos yet is inept at either making connections or understanding the meaning of what he
does. Swift’s characterization of him draws attention to a fundamental weakness inherent in the
intelligence society’s method of bidding for status. If its raison d’être was confidence that human
intelligence was the highest social value, and yet this intelligence was value-free, that is, oblivious
of ethics –ignorant regarding what to value –then what capacity could it possess for sorting
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through thorny moral challenges such as the one Gulliver confronts when he meets the Yahoos?
In Gulliver’s Travels, members of the intelligence society do not have a mechanism for thinking
ethically about how to treat people who do not like look or think like them. Most importantly,
by presenting the protagonist as a cognitive ableist who himself turns out to be a less-than-able
thinker, the text calls attention to a flaw in intelligence-society ideology: the radical divergence
between a person’s assessment of his or her own mental powers and the actual acuity of those
powers as others perceive them. Ultimately, Gulliver’s Travels calls upon readers to stop short
of making sweeping generalizations of the kind the protagonist makes and instead exercise, in
Ralph Savarese’s phrase, “an interpretive humility in the face of the cognitively ‘other’ ” (424).
Notes
1 Idiots, natural fools, changelings, and related terms have little to do with our contemporary understandings
of IDD because, for the most part, the medical gaze was only beginning to form in the long eighteenth
century. To go searching in the archive for figures and characters instantiating states of cognitive diffe-
rence would be, to employ a telling pun, a fool’s errand (McDonagh, Goodey, and Stainton 1–5).
2 See Neugebauer about idiots in medieval law.
3 Simplican maintains that Locke “exploits the indeterminacy between changelings and idiots, as their
ignorance exemplifies the universal limits of human understanding and the outer limits of what is rec-
ognizably human” (36). For more regarding the intricacies of Locke’s use of changeling as opposed to idiot,
natural fool, and related terms, see McDonagh, Goodey, and Stainton 3.
4 For more on Locke, changelings, and idiocy, see Goodey 313–46; Simplican 25–46; and Gabbard 108–11.
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Defoe, Daniel. Colonel Jack. Blackmask Online, 2002, www.public-library.uk/ebooks/23/14.pdf. Accessed
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9
CRIP GOTHIC
Affiliations of disability and queerness in Horace
Walpole’s The Castle of Otranto (1764)
Jason S. Farr
This chapter examines Horace Walpole’s use of nonnormative bodies in his gothic masterpiece,
The Castle of Otranto (1764), to advance a long literary history of crip and queer affiliations. In
what follows, I explore how widespread fears tied to the specters of disability and queerness
shape eighteenth-century family life and the early gothic mode in Britain. Alison Kafer, Robert
McRuer, and Carrie Sandahl, among others, have explored the subversive intersections of dis-
ability and queerness in more recent forms of cultural production –in art, literature, film,
popular culture, and activism. In The Biopolitics of Disability: Neoliberalism, Ablenationalism, and
Peripheral Embodiment (2015), David T. Mitchell and Sharon L. Snyder distill one of the prevailing
assumptions that undergirds this vibrant line of inquiry, arguing that “all bodies identified as
excessively deviant are queer in the sense that they represent discordant functionalities and
outlaw sexualities” (3). For Mitchell and Snyder, the queerness of variable bodies is expressed
through subversive sexual practices, and in public spaces, where people with disabilities unsettle
the ableist gaze through unanticipated movements. They further argue that the social exclusion
of “crip/queer forms of embodiment” occurs in the late nineteenth century, as a consequence
of sexual prohibition within biopolitics (3).
While I concur that biopolitics and the implementation of sexual taboos play vital roles in
consolidating crip and queer embodiment, I argue that there is a longer cultural history at work
here. During the eighteenth century, for instance, impaired, ill, and otherwise variable bodies are
often represented as obstacles to cross-sex desire, romance, and reproduction. In these narratives,
a healthy constitution and appearance are regarded as crucial for fostering heterosexual bonds,
while physical difference often signals nonstandard sexual desire. When read with attention to
the nonnormative bodies and queer desires depicted within their pages, eighteenth-century
novels offer insights into how deeply embedded and intertwined emerging conceptions of
heteronormativity and able-bodiedness are in the British and Western traditions. Novels, with
their focus on ongoing conflicts between embodied self and society, enable insights into the
many ideological incongruities inherent in systems that privilege certain bodies and desires over
others. Several authors from the period penned critiques of normative embodiment and desire,
and even conceived of alternative social orders that reworked the status quo. For instance, in
Millenium Hall (1762), Sarah Scott depicts women’s sapphic bonds and extraordinary bodies as
foundational for the reorganization of British society. Taken together, disability and queerness
anchor Scott’s utopian vision.
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Jason S. Farr
Though a far cry from the utopian premise of Scott’s nearly contemporaneous novel, Horace
Walpole’s The Castle of Otranto (1764) also situates disability and queerness as sources of troub-
ling, persistent tension for genteel and aristocratic British society. Along with Scott, Walpole
critiques dominant social systems in which the degradation of women and people with dis-
abilities are taken as a matter of course. The Castle of Otranto highlights these systems’ reliance
upon three discursive formations, through which we may perceive emerging constructions of
heteronormativity and able-bodiedness in the Enlightenment: the system of primogeniture,
early theories of degeneracy, and the culture of libertinism. These legal, scientific, and political
structures rely upon the mutual constitution of disability and queerness. Walpole exploits cul-
tural anxieties tied to these systems through key plot developments that lead to the novel’s cli-
mactic “castatrophe,” in which father murders daughter, a family’s unjust dynasty collapses, and
order seems to be restored to the many unruly excesses that appear throughout the narrative
(6). Beyond the plot device that queerness and disability represent within the narrative, Walpole
levels a critique at the very systems that rely upon normative embodiment and desire. In this
sense, Walpole’s envisioning of the gothic is not only amenable to queer subject formation, as
George Haggerty has argued: we might also think about the novel as crip for the way that it
situates impairment as the critical, resilient center of narrative that haunts healthy, able bodies.1
Though Conrad, the “sickly” heir to the throne of Otranto, dies on the second page, he is key
for understanding how queerness and disability disturb the promises of reproductive futurity.
Walpole’s portrayal of Conrad’s haunting presence underscores the lingering violence that
heteronormative codes impose upon individual bodies, and reveals that the idea of health (still
in its nascent modern formulation in the eighteenth century) is an elusive fantasy.2 Disability
carries greater weight than mere plot catalyst in Walpole’s novel; it is, rather, that to which the
narrative gestures as an inevitable state of the body and mind. Through close attention to asso-
ciations of chronic illness and queerness, this chapter demonstrates the considerable role that
impairment plays in in the early British gothic genre and in the literary history of sexuality.
The system of primogeniture and Conrad’s chronic illness

The instability which pervades the system of primogeniture constitutes much of the family
drama in The Castle of Otranto. This system, in which the eldest son inherits a landed family’s
estate unencumbered, depends entirely upon the notion of healthy young men and women
who merge family interests through alliance marriage, socially sanctioned sexual practice, repro-
duction, and effective child-rearing, all so that the next generation can repeat this well-trodden
pattern. Through these seemingly inviolable principles, elite, landed families could sustain their
interests from generation to generation. In novels such as Pride and Prejudice (1813) and Mansfield
Park (1814), Jane Austen portrays the difficulties of such a legal framework for young women,
who are vulnerable in this exacting, male-centered arrangement. However, the Jane Bennets
and Fanny Prices of Austen’s fiction are not the only characters exposed to the precarious
conditions of patrilineal succession. Walpole also explores the demanding social pressures of
reproductive futurity by creating a male character in Conrad whose ostensible sexual impotence
threatens to overturn succession and property inheritance.
Throughout Walpole’s novel –widely considered the first in the British gothic tradition –
queerness and disability haunt the tyrant Manfred, who ultimately cannot sustain his lineage
due to their very persistence. In the narrative’s first pages, Manfred’s only son, Conrad, is bound
to marry Isabella, the daughter of a rival aristocrat, to consolidate Manfred’s already precarious
status as ruler of Otranto. However, young Conrad –“a homely youth, sickly, and of no prom-
ising disposition” –suffers from an unnamed chronic illness, and the impending nuptials are
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Crip gothic
delayed until his “infirm state of health would permit” the ceremony (17). Despite Manfred’s
wife Hippolita’s anxieties pertaining to their son Conrad’s various bodily impairments, Manfred
is eager to establish the union because he is consumed by an obsessive desire to preserve his reign
through the reproductive extension of his family line, and to live down the ancient prophesy
“That the castle and lordship of Otranto should pass from the present family, whenever the
real owner should be grown too large to inhabit it” (17). When the much-anticipated marriage
is about to occur, however, Conrad is found “dashed to pieces” by a mysterious, “enormous”
knight’s helmet, an overdetermined symbol of archaic male virility that crushes him beneath
its unbearable weight (18). It is soon revealed by an unknown peasant (who turns out to be
Theodore, the rightful prince) that the helmet belongs to the statue of a prince from former
times, Alfonso the Good, whose massive, armored resemblance is housed nearby, at the Church
of St. Nicolas.The helmet’s “miraculous” decimation of Conrad is suggestive of the illegitimacy
of Manfred’s claim to the principality, driving Manfred into a frenzied set of senseless, despotic
actions to uphold his status as sovereign (20). Conrad is a central figure for the British gothic
genre generally. His “disfigured corpse,” Haggerty argues, becomes “central to the formation
of subjectivity in gothic fiction” for the way that it connotes an “erotics of loss” (24). I would
add that, in addition to the loss connoted by Conrad’s queerness, Conrad’s impairment is at the
center of Walpole’s work. Conrad is, after all, chronically ill, and his bloody annihilation under
the weight of the armor’s monstrous masculinity sets in motion Manfred’s tyranny, including
his incestuous lusting after, and sexual violence toward, Isabella. Conrad is not just a peripheral
character who is eradicated on the very first pages of the novel; he is the queer, disabled catalyst
of the plot, and by extension, of the early British gothic genre.
Conrad’s untimely death creates the major conflict of the narrative: with no male heirs to
whom he could pass his ancestor Ricardo’s ill-gotten monarchical claim, Manfred decides to
divorce Hippolita and marry Isabella himself. As Manfred makes his case to Isabella for their
union, he urges her to forget her now deceased fiancée Conrad in the following terms:
[h]‌e was a sickly, puny child, and Heaven has perhaps taken him away, that I might
not trust the honours of my house on so frail a foundation. The line of Manfred calls
for numerous supports. My foolish fondness for that boy blinded the eyes of my pru-
dence –but it is better as it is. I hope, in a few years, to have reason to rejoice at the
death of Conrad…Instead of a sickly boy, you shall have a husband in the prime of
his age, who will know how to value your beauties, and who may expect a numerous
offspring. (23–24)
Through Manfred’s audacious and heartless justification for marriage to Isabella, Walpole
elucidates a deeply engrained system of thought that stigmatizes disabled people as weak, as
anomalous, as lesser than. Manfred assumes here the status of “normate,” which as Rosemarie
Garland-Thomson argues, is a social identity in which an able-bodied man assumes a place of
privilege and power based on his blatant marginalization of physical, sensory, or intellectual diffe-
rence (8–9). In identifying his “fondness” for Conrad as that which “blinded his eyes,” Manfred
articulates his baseness through ableist language meant to capture his own temporary inability to
“see” the truth of his stymied lineage (23). It might seem as though Walpole abides by the logic
that sustains the normate by eliminating Conrad so early on in the narrative, excluding for-
ever the possibility that Manfred’s succession might be passed down through his son. However,
Manfred represents the normate’s unforgiving principles and limiting logics, which Walpole
critiques by exposing Manfred’s delirious and desperate attempts to secure authority through
his unrelenting authoritarianism. By establishing Manfred’s partiality for able-bodiedness, even
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Jason S. Farr
at the expense of the memory of a recently deceased and beloved son, Walpole shows that such
values contaminate familial relations. Within this framework, the likes of Conrad are perceived
to be better dead than alive because impairment is thought of as a fate worse than death. Death,
however, cannot and does not eradicate the specter of disability in the narrative.
The above passage also reveals that Conrad is sexually suspect. Because, as Manfred implies,
Conrad does not know how to “value” the “beauties” of Isabella, he has no place in the
courtship drama. The “frail foundation” that Manfred identifies refers to Conrad’s incapacity
to produce a healthy male heir to continue the family line. In other words, it is because he is
chronically ill that Conrad is also queer; he stands outside of the normative frameworks of het-
erosexual desire and patrilineal succession due to his “sickly” constitution. Manfred’s invoking
of Conrad’s infertility as he attempts to exercise authority over Isabella’s body indicates that
heteronormativity and ableism are his foremost rhetorical strategies to enact unbridled patri-
archal domination. Manfred’s conceptualization of male health as a vital factor for successful
procreation indicates a moment of rhetorical clarity in the midst of the unhinged disorder to
which he has succumbed in the wake of his son’s demise. Questions would of course surround
Manfred’s own “foundation”: after all, he and Hippolita have only given birth to two children,
one of whom is chronically ill. Through the characterization of Conrad’s queerness, and the
desperate measures that Manfred takes as a result of his own reproductive ineptitude, Walpole
draws attention to the consternation surrounding variably-embodied male heirs who bear the
burden of continuing the family line. Though Conrad’s debilitating illness might seem to serve
as an intergenerational reflection of his father’s moral deformity and the family’s fragile, unjust
claim, it becomes the means by which Walpole reveals Manfred’s hard-heartedness and vicious
inclinations. The system of primogeniture, which operates under the coordinates of health and
heterosexuality, is thus shown to perpetuate violence when its narrow script is unsettled. This
disruption of heterosexual reproduction is also the narrative tension that Walpole dramatizes to
heighten the horror of the narrative.
The plot tension of Walpole’s gothic tale inheres not only in the impaired body of Conrad,
but also in a system that prescribes normative embodiment and heterosexual desire as buttressing
authority across generations. During the eighteenth century in Britain, the shift away from an
emphasis on monarchical rule to that of a parliamentary one might seem to entail a move
away from the fundamental practice of primogeniture for elite families. However, the Glorious
Revolution of 1688, a key moment that would appear to mark such a shift (in which Parliament
opted for James II’s daughter over his eldest son as ruler), did not eradicate the public’s obses-
sion with the procreative practices of its rulers, as Lisa Forman Cody has shown. Even after the
Glorious Revolution of 1688, which seemed to bring about a new era of Lockean political
reason that triumphed over the primacy of bloodlines, the familial and procreative practices
of British rulers continued to occupy public discourse, and, as we can see in The Castle of
Otranto, literature (Cody 6). Though they generally consolidate the cultural values of emer-
gent middle classes, eighteenth-century novels also participate in what Nancy Armstrong calls
a “panoptical conception” of domesticity that sustain the principles of primogeniture, and
include representations of aristocratic privilege such as that which is depicted in The Castle
of Otranto (130). In fact, one of the novel’s greatest mysteries, which is not revealed until the
final pages, is that the apprehensions provoked by Conrad’s compromised virility are intensi-
fied by Manfred’s desperate but ultimately futile attempts to avoid the fulfillment of an ancient
prophecy, that his ancestor, Ricardo’s “posterity should reign in Otranto…as long as issue male
from Ricardo’s loins should remain to enjoy it” (104).The prophecy only heightens the urgency
of reproduction, and in his absolutist adherence to this social obligation, Manfred becomes the
basest of villains: he seeks to divorce Hippolita; he offers his daughter, Matilda, to Frederic in
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exchange for union with Isabella; and finally, when his temper reaches its zenith, he murders
his only remaining child, Matilda, in cold blood in the Church of St. Nicolas. At the heart of
these narrative conflicts is the inherent problem of compulsory heterosexuality and health that
undergirds the system of primogeniture. It is because of the absolutely entrenched nature of
primogeniture that Manfred seeks in vain to step in as able-bodied replacement for Conrad’s
heterosexual failure. Conrad’s body is a threat to the established order of the castle, but as we
finally discover at the end of the narrative, his fate had already been sealed long before his
birth. Disability and queerness thus serve as the foremost threats to the continuity of the state,
according to Walpole’s narrative.
Despite the spectacular way that he is decimated by the oversized rendering of Alfred the
Good’s masculinity, Conrad’s presence is never eradicated from the plot, and in this we observe
his crip haunting of heteronormativity. Given this inauspicious ending for Conrad, a yawning
chasm would seem to divide him from the other male characters in the novel. While Manfred,
“in the prime of his age” and seemingly of a vigorous body, discourses at length about his rule,
and Theodore –valiant, robust, and handsome –articulates his righteous resistance to Manfred,
Conrad never actually speaks (24). However, Conrad haunts the present tense of the narrative
until the ending, when Theodore finally becomes the rightful prince of Otranto. At two points
in the novel especially, Conrad’s crip hauntings disrupt exchanges between Theodore and his
potential romantic interests, Isabella and Matilda, who believe that the eerie sounds and visions
they confront are attributable to Conrad’s ghost. In Matilda’s case, unfamiliar noises interrupt a
conversation between her and her servant, Bianca, about her romantic prospects with Theodore:
“Blessed Mary!” said Bianca, starting, “there it is again! Dear Madam, do you hear
nothing? this castle is certainly haunted!”
“Peace!” said Matilda, “and listen! I did think I heard a voice –but it must be
fancy: your terrors, I suppose, have infected me.”
“Indeed! indeed! Madam,” said Bianca, half-weeping with agony, “I am sure I heard
a voice.”
“Does anybody lie in the chamber beneath?” said the Princess.
“Nobody has dared to lie there,” answered Bianca, “since the great astrologer, that
was your brother’s tutor, drowned himself. For certain, Madam, his ghost and the
young Prince’s are now met in the chamber below –for Heaven’s sake let us fly to
your mother’s apartment!” (39–40)
In this stilted conversation between Matilda and Bianca, terror is couched as infection, which
Matilda imagines to have passed from Bianca to herself. The source of said infectious terror is
initially attributed to Conrad, whose ghost, Bianca supposes, mingles with that of his deceased
tutor. Their ghostly cohabitation in the chamber below is suggestive of a pederastic relationship
that haunts Bianca’s heteronormative fantasy and disrupts her attempts to instigate a romance
between Matilda and Theodore. In the end, the noises stem not from homophile ghosts, but
from Theodore. Bianca and Matilda’s conflation of Conrad with Theodore suggests that Conrad
is Theodore’s ghostly double.
A very similar misunderstanding occurs as Isabella flees Manfred and encounters Theodore
in the castle’s underground passages. When she initially senses Theodore’s presence, Isabella
wrongly supposes that he is “the ghost of her betrothed Conrad,” only to soon be disabused of
her misperception (28). During her frightening escape from Manfred, Isabella is haunted by the
injunction to marry someone that she does not love. Once again, Conrad’s ghost functions as a
double to Theodore, in the way that the doppelganger, for Freud, represents the projection of
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repressed desires and traumatic fears imposed by social taboos (219–253). Conrad and Theodore
seem far from one another in terms of their physical constitutions, but their proximity to one
another in these passages reveals something about the temporary nature of corporeal vigor.
By portraying this uncanny crip troubling of the masculine ideal, Walpole implies that, despite
what measures might be taken, disability inevitably endures in the context of heterosexual,
able-bodied courtship. Walpole’s narrative reveals that ongoing preoccupations with chronic
illness, physical difference, and sexual dysfunction are the stuff of recurring heteronormative
nightmares.
And indeed, this is the case if we look to the ending of The Castle of Otranto as a circular cul-
mination of the narrative. In the final pages,Theodore, previously the intrepid hero, has become
permanently depressive. He finds in his new wife, Isabella, “one with whom he could forever
indulge the melancholy that had taken possession of his soul” due to his beloved Matilda’s
death at the hands of Manfred (105). Given Conrad’s lingering presence, physical disability is
not eliminated until the novel’s end, only to be supplanted by the psychological variance of
Theodore, who will never come to terms with Matilda’s untimely demise. In this sense, Alfred
the Good’s past haunts the present tense of Manfred’s unjust rule in the same way that Conrad’s
chronically sick body troubles the masculine vigor of Manfred and Theodore.There is no “hap-
pily ever after,” as the gothic teaches us, even for the likes of Theodore, who would seem to
have it all in a corporeal sense. Disability becomes one of the persistent and circular elements of
Walpole’s narrative –evident from the very start, and despite a number of events which would
seem to subdue it, still evident at the end. Melancholia is, admittedly, a very different discursive
and lived experience from the chronic illness that Conrad possesses, but in a parallel fashion,
these two forms of impairment function as symptomatic markers of aristocratic privilege and
insularity. Far from offering resolutions for embodied and psychological variability, The Castle
of Otranto divulges that these states are inevitable qualities of the human experience, that they
accompany the just and the unjust in equally insistent ways. The reader is left to imagine what
the future might hold for Theodore and Isabella: will their marriage, like that of Manfred and
Hippolita, be disturbed by a complex negotiation of the imperatives of primogeniture for the
extension of their family line? And just what does impairment signify in the context of procre-
ation in this period?
Degeneracy in the eighteenth century

Besides exposing the central significance of heteronormativity and able-bodiedness for the
system of primogeniture, Walpole’s excision of Conrad from the first pages of The Castle of
Otranto belies an enduring cultural assumption, that disability is thought to render one incap-
able of engaging in procreative heterosexuality. When Manfred tells Isabella that his line “calls
for numerous supports” he may as well be talking about heterosexuality itself, which relies
on an array of ideological stakes –ranging from courtship rituals, to gender performativity,
and from sentiment to standard sexual intercourse –to sustain itself as the ultimate source of
moral sensibility.3 In the eighteenth century, disability complicates heterosexuality, for, as the-
ories of degeneracy stipulated, it raises the possibility that the propagation of future generations
might be compromised. As The Castle of Otranto makes clear, Enlightenment-era apprehensions
surrounding variably-embodied people sometimes involved their ability to bear healthy children.
Fears about disabled people engaging in procreative sexual intercourse –the idea, especially, that
this would bring about degeneracy in future generations –underscore the indissoluble character
of disability and sexuality in eighteenth-century Britain, a full century before Francis Galton
coined the term “eugenics.” In The History of Sexuality, Volume One: An Introduction (1990),
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Michel Foucault identifies the emergence of eugenics and psychoanalysis as two “innovations
in the technology of sex” in the latter half of the nineteenth century, which, together, helped
to forge modern sexuality:
[t]‌he theory of “degenerescence” made it possible for [psychoanalysis and eugenics] to

perpetually refer back to one another; it explained how a heredity that was burdened
with various maladies (it made little difference whether these were organic, functional,
or psychical) ended by producing a sexual pervert (look into the genealogy of an
exhibitionist or a homosexual: you will find a hemiplegic ancestor, a phthisic parent,
or an uncle afflicted with senile dementia); but it went on to explain how a sexual
perversion resulted in the depletion of one’s line of descent –rickets in the children,
the sterility of future generations.The series composed of perversion-heredity-degen-
erescence formed the solid nucleus of the new technologies of sex. (118)
As Foucault argues here, the linkage between bodies and desires coalesce around emerging the-
ories of eugenics and psychoanalysis, for “perverse” sexual practices were perceived to result in
the degeneration of a family’s lineage. If perversity occurs, degeneracy follows; if people with
physical or cognitive disabilities reproduce, they give birth to perverts, or so scientists argued.
Foucault establishes this mutually sustaining set of principles as central to what he terms “the
deployment of sexuality,” a system of sexuality which gradually supplants the “deployment of
alliance” from the eighteenth century onward. He characterizes this shift as one in which laws
and customs that prohibit certain sexual practices (the deployment of alliance) are supplanted by
an “intensification of the body –with its exploitation as an object of knowledge and an element
in relations of power” (107). For Foucault, the establishment of eugenics and psychoanalysis
epitomize this new approach to the body, in which science links perversion with degeneracy. In
this way, heterosexuality is established discursively as a system that is, in its ideal form, devoid of
physical or cognitive impairment.
Theories of degeneracy, however, did not emerge suddenly with Freud or Galton. We may
look back to the eighteenth century to see evidence of its prehistory. One mid-eighteenth-
century tract, for example, allows us to envision contemporaneous ideas about sex and degen-
eracy.This work, an English translation from a 1655 advice book called Callipedie by the French
doctor and poet, Claude Quillet, imagines a future free of deformity and illness as an achievable
goal for young partners in marriage. In his standardization of unruly desires and bodies, Quillet
counsels newlyweds on how to have “healthy and beautiful Offspring,” which he argues, “is
not only the highest Pleasure and Honour to Parents, but of great Importance to Mankind in
general” (preface). In the opening lines to Advice to New-Married Persons: Or, The Art of Having
Beautiful Children (1750) (which is the English translation of Quillet’s work), Quillet comments
upon the importance of the rites and customs of the marital bed for establishing this perfect
future:
The muse instructive shall their Offspring grace,

And form the future Honours of their Race:
Beauty the long successive Line shall crown,
And no deform’d unsightly Birth be known. (2)
The imperative of heterosexual reproductive futurity that is apparent in these lines speaks to
the legal custom of patrilineal succession. Quillet explains to young husbands and wives how to
avoid giving birth to the “misshapen breed” that would dilute the “purity” of their lineage (34).
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Jason S. Farr
While beauty is adorned with a crown, the ultimate symbol of triumph and rule, the “unsightly
Birth” is, like Conrad, eliminated and thereby deemed a nonsubject.Thus, any “deformed” birth
becomes a manifestation of procreative failure. Conrad, with his chronic illness, is a literary
representation of such ableist thinking: he stands in for the degeneracy of Manfred’s lineage
as a symptom of Manfred’s perverse inclinations. With such an investment in certain forms
of embodiment and health made manifest, Quillet imagines a future in which disability has
disappeared due to the wholesome reproductive practices of young, beautiful couples.This tract
thus advances the notion that the “race” of various families could be perfected by rooting out
“unsightly” bodies if sexual partners avoid unsightly bodies as partners, and if they adhere to
certain principles.To do heterosexuality correctly, in other words, is to eradicate deformity.This
line of thought, as Foucault would argue, is indicative of larger cultural forces that policed sex,
“that is, not through the rigor of a taboo, but the necessity of regulating sex through useful and
public discourses” (25). Ann Laura Stoler claims that the sort of thinking embedded in this tract
foreshadows modern forms of racism, in that it merges middle-class domesticity, sexuality, and
“regular” forms of embodiment into a productive discourse that would eventually culminate
in a scientific vision that “undesirables,” in terms of race and/or disability, could be eradicated
from human populations (125). Such a racist, ableist envisioning of heterosexuality serves as one
of the baseline assumptions that Walpole dramatizes to maximum effect.
Libertinism and disability

Beyond encompassing the system of primogeniture and emergent theories of degeneracy, The
Castle of Otranto also critiques the culture of libertinism, another system that brings together dis-
ability and sexuality in the eighteenth century. While earlier novels and literary works examine
the libertine’s reform –perhaps most notably, in Samuel Richardson’s Pamela (1740) – Walpole’s
work capitalizes on the notion of the unreformed aristocratic man who gives way to his animal
spirits and uses his sexuality as a tool to dominate and exploit those beneath him. Manfred’s base
villainy and lurid desire establish him as such a memorable monster. One may examine this in
his unabashed pursuit of Isabella, whom he sexually terrorizes for the purposes of strengthening
his political power. As I have argued elsewhere, libertine sexuality is marked by a mobiliza-
tion of political and sexual ascendancy through the complex negotiation of corporeal vigor
(Farr 96–118). In this milieu, there is often a dismissal of physically disabled women as sexu-
ally impenetrable, and an emasculation of disabled men due to the perception that they are
incapable of active sexual penetration. In the context of libertine embodiment, able-bodiedness
serves as linchpin for the dominant sexual posturing of libertine men, but also renders them
vulnerable to sexual dysfunction, a kind of temporary disability that muddles the boundary
between masculinity and emasculation, ability and disability. This is observable in John Wilmot,
Earl of Rochester’s “The Imperfect Enjoyment,” in which the male speaker is forced to con-
front the question of his own virility. After prematurely ejaculating with his lover Corinna,
the speaker is thereafter unable to get an erection. Sexual dysfunction defines the poem and
serves as a reminder of the vulnerability of not only the libertine’s sexual dominance, but of
his political ascendancy, for the two are resolutely conjoined in the culture of libertinism.4 This
is the case until the very end of the poem, at which point the speaker concedes that there are
“ten thousand abler pricks” that could potentially make up for his loss (15–17). The notion
that an unnamed substitute penis will please Corinna, who remains unfulfilled, frustrated, and
subordinate, ultimately restores the order of male dominance that the poem comes so close to
undermining.
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Such negotiation of desire and embodiment are at work in another Restoration text,
William Wycherley’s The Country Wife (1775). Horner, the play’s rake-hero, is driven to
cuckold men, which, as Eve Sedgwick argues, is his primary motive, establishing the sig-
nificance of male homosocial bonding for perpetuating the “traffic in women” and gen-
erating the play’s plot (49–66). He is aided in these endeavors by feigning a case of the
syphilis that he is supposed to have contracted while gallivanting about in France. Once the
physician Quack’s reports spread of Horner’s impotence –that he is “as bad as a eunuch” –
Horner hopes to have free access to the women of the town (4). His scheme ends up
working. Horner has a dalliance with Lady Fidget, whose husband, Sir Jasper, seems utterly
unconcerned about the sexual threat posed by a man who has contracted a sexually trans-
mitted infection, during the memorable “China scene.” When Sir Jasper walks in on Lady
Fidget and Horner with their arms about each other, Lady Fidget is able to pass it off
as an innocent game of tickling. What is more, Horner and Lady Fidget continue their
sexual frolicking in Sir Jasper’s presence, behind a closed bedroom door (56). Through his
successful performance of disease, Horner becomes the virile rake-hero of the play, and
true to Restoration court culture, enjoys his sexuality without having to marry in the end.
In this case, the performance of disease –of eunuchism –grants the libertine the grati-
fication of his animal spirits. Thus, libertinism is defined in part by one’s negotiation of
ability and disability, or of health and illness, in the context of sexuality, further reinforcing
how absolutely interconnected disability and sexuality are in the Restoration, and in the
century to follow. Walpole, writing nearly 100 years later, imagines a very different kind
of male sexual dominance, in which politically ascendant men come to embody the hor-
rific impulses of unrestrained libido and appetite for power. Walpole is able to capitalize
on cultural apprehensions about procreation, succession, and sexual excess –all through
the ideology of ability –in order to establish a tale of horror that struck a chord with
eighteenth-century readers, and that set the tone for a new generations of writers such as
Ann Radcliffe, Matthew G. Lewis, and Charlotte Dacre.
Conclusion
In The Castle of Otranto, Horace Walpole exploits cultural anxieties tied to the system of primo-
geniture, theories of degeneracy, and the culture of libertinism to create a suspenseful tale of
horror that has resonated with readers since its publication. Part of the novel’s lasting influence
derives from its engagement with discourses of embodiment deemed vital for the advance-
ment of the British nation. As a ghostly presence from the past that haunts the prospective
heterosexual romances of Walpole’s novel, Conrad reminds us of the critical light that phys-
ical difference shines on the normate. Through Conrad and his double, the “forever” melan-
cholic Theodore,Walpole reveals that disability is an inevitable facet of human existence despite
efforts from the likes of Manfred and, in another context, Claude Quillet, to eradicate it (105).
Though many novels from the eighteenth century establish healthy marriages as their reso-
lution, the coordination of heterosexual marriage and health prove illusory in The Castle of
Otranto. In Walpole’s gothic tale, disability and queerness disturb social systems that subordinate
and exclude an array of bodies and desires through the guise of rationality. We may understand
Conrad’s lingering presence in The Castle of Otranto as crip reworking of these systems and of
the able-bodied, heterosexual futures they promulgate. Walpole’s novel and the gothic genre
he helped to define enjoy enduring cultural resonance due in large part to the nonnormative
bodies that repeatedly and successfully subvert normalcy.5
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Jason S. Farr
Notes
1 The title of this essay is inspired by George Haggerty’s Queer Gothic (Urbana-Champagne: University of
Illinois Press, 2006).To read more about how physical difference figures in gothic novels from the eight-
eenth and nineteenth centuries, see Ruth Bienstock Anolik’s collection of essays, Demons of the Body and
Mind: Essays on Disability in Gothic Literature (Jefferson, North Carolina: McFarland, 2010).
2 Christopher Lawrence argues that modern British notions of “health” are historically tied to
Industrialization-era medical practices, such as surgical intervention, which mark the shift from humoral
to biomedical theories of the body. See Lawrence, Medicine in the Making of Modern Britain (London and
New York: Routledge, 1994), 62.
3 Paul Kelleher discusses sentiment’s role in constituting heterosexual love as moral imperative. See
Kelleher, Making Love: Sentiment and Sexuality in Eighteenth-Century Literature.
4 My reading of Rochester has been informed to some extent by Melissa E. Sanchez’s “Libertinism
and Romance in Rochester’s Poetry” and Harold Weber’s The Restoration Rake-Hero: Transformations in
Sexual Understanding in Seventeenth-Century England.
5 Portions of this essay previously appeared in “Introduction: Disability and the Literary History of
Sexuality,” in Novel Bodies: Disability and Sexuality in Eighteenth-Century British Literature, by Jason S. Farr
(Bucknell University Press, 2019).
Works cited
Anolik, Ruth Bienstock. Demons of the Body and Mind: Essays on Disability in Gothic Literature. 1st ed.
McFarland, 2010.
Armstrong, Nancy. Desire and Domestic Fiction: A Political History of the Novel. Oxford University Press, 1990.
Austen, Jane. Mansfield Park. Edited by James Kinsley. Oxford University Press, 2003.
———. Pride and Prejudice. Edited by James Kinsley. Oxford University Press, 2004.
Cody, Lisa Forman. Birthing the Nation: Sex, Science, and the Conception of Eighteenth-Century Britons. Oxford
Farr, Jason S. “Libertine Sexuality and Queer-Crip Embodiment in Eighteenth-Century Britain.” Journal
for Early Modern Cultural Studies, vol. 16, no. 4, 2016, pp. 96–118.
Foucault, Michel. The History of Sexuality,Vol. 1: An Introduction. Reissue ed.Vintage, 1990.
Freud, Sigmund. “The ‘Uncanny.’” An Infantile Neurosis and Other Works. Hogarth Press, 1986, pp. 219–253.
Literature. New York University Press, 1996.
Haggerty, George. Queer Gothic. University of Illinois Press, 2006.
Kelleher, Paul. Making Love: Sentiment and Sexuality in Eighteenth- Century British Literature. Bucknell
Lawrence, Christopher. Medicine in the Making of Modern Britain, 1700–1920. Routledge, 1994.
McMillin, Scott, editor. Restoration and Eighteenth-Century Comedy. 2nd ed.W.W. Norton & Company, 1997.
McRuer, Robert. Crip Theory: Cultural Signs of Queerness and Disability. New York University Press, 2006.
Mitchell, David T., and Sharon L. Snyder. The Biopolitics of Disability: Neoliberalism, Ablenationalism, and
Peripheral Embodiment. University of Michigan Press, 2015.
Quillet, Claude. Advice to New-Married Persons: Or,The Art of Having Beautiful Children. London, 1750.
Richardson, Samuel. Pamela. Edited by Thomas Keymer and Alice Wakely. Oxford Univerity Press, 2004.
Sanchez, Melissa E. “Libertinism and Romance in Rochester’s Poetry.” Eighteenth-Century Studies, vol. 38,
no. 3, 2005, pp. 441–459.
Sandahl, Carrie. “Queering the Crip or Cripping the Queer? Intersections of Queer and Crip Identities
in Solo Autobiographical Performance.” GLQ: A Journal of Lesbian and Gay Studies, vol. 9, no. 1, Apr.
2003, pp. 25–56.
Scott, Sarah. Millenium Hall. Edited by Gary Kelley. Broadview Press, 1995.
Sedgwick, Eve Kosofsky. Between Men: English Literature and Male Homosocial Desire. Columbia University
Press, 1992.
Stoler, Ann Laura. Race and the Education of Desire: Foucault’s History of Sexuality and the Colonial Order of
Things. Duke University Press, 1995.
Walpole, Horace. The Castle of Otranto: A Gothic Story. Edited by Nick Groom. 3rd ed. Oxford University
Press, 2014.
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Weber, Harold. The Restoration Rake-Hero: Transformations in Sexual Understanding in Seventeenth-Century

England. University of Wisconsin Press, 1986.
Wilmot, John, Earl of Rochester. Selected Works. Edited by H. Frank Ellis. Penguin Classics, 2004.
Wycherley, William. The Country Wife. In Restoration and Eighteenth-Century Comedy. Edited by Scott
McMillin. Norton Critical Editions, 1997, pp. 3–78.
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10
“OF WONDERFUL USE
TO EVERYONE”
Disability and the marriage plot in the
nineteenth-century  novel
Clare Walker Gore
It is a truth universally acknowledged that a disabled character in a Victorian novel must remain
in want of a wife (or husband). Although disabled characters are to be found across the field
of Victorian fiction, occupying roles ranging from the comic to the tragic, from the villainous
to the saintly, and from the peripheral to the privileged, they are only very, very rarely allowed
to star in their own marriage plots. Indeed, their exclusion from the marriage plot might be
taken as the clearest possible example of how disabled characters are disabled as characters in
the Victorian novel, their ability to act in this plot-line starkly curtailed by their membership of
a stigmatised identity category.
This taboo cannot be explained away by any simple equation between purportedly realist
fiction and historical reality: it is clear that in the real world, then as now, disabled people regu-
larly married. Prejudice may well have complicated their love lives, but it certainly did not make
marriage impossible: many if not most of the most prominent disabled individuals in the nine-
teenth century were married, including Henry Fawcett (who was blind), Arthur Macmurrough
Kavanagh (who was limbless), John Kitto (who was profoundly deaf), and Elizabeth Barrett
Browning (who suffered chronic pain and was periodically unable to walk). Characters in
novels who share these same disabilities, however, are almost always depicted as unable to marry.
Tellingly, the reaction of contemporary critics to plot lines in which disabled characters did
marry suggests that, rather than finding this prospect unrealistic, they found it unseemly. When
Wilkie Collins brought his blind heroine’s marriage plot to an unusually happy ending in Poor
Miss Finch (1872), for example, a critic writing in The Saturday Review that same year objected
that while he had “little doubt that Mr. Wilkie Collins has made his blind girl more faithful to
nature in thought, act, and speech than Lord Lytton’s Nydia”,1 such realism was undesirable: “it
seems to us that an infirmity like blindness should chill the passions to a temperature in which
it would be impossible for love to spring up” (“Poor Miss Finch” 282, 283; emphasis added). It is
beyond the scope of this essay to explore fully the complex of anxieties which might have lain
behind this critic’s unexplained preference for unhappy celibacy over matrimony as a narrative
fate for disabled characters, but it seems reasonable to assume that it was rooted in fears about
heredity and its mysterious workings (might disabled parents transmit their disabilities to their
offspring?), economic productivity and “unfitness” (should those unfit to compete in the cap-
italist marketplace be allowed to participate in the marriage market?), the instability of gender
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Disability and the marriage plot
(were men feminised by disability, and could feminised men be sexually attractive to women?),
and much more besides.2
What I want to examine in this chapter is not so much the causes as the consequences of this
unwillingness on the part of nineteenth-century novelists and readers to see disabled characters
starring in their own marriage plots. Far from shutting them out altogether from the marriage
plot, their exclusion from what we might call the central role –that of the successful suitor
or successfully-sought beloved –actually enables them to act more effectively in ancillary and
supporting roles. When you begin to look for them, you realise that disabled characters are cru-
cial actors in a plethora of nineteenth-century marriage plots, and that their work as midwives
to other people’s marriages depends upon their disabled identity in a variety of different ways.
An identity rooted in dysfunction –what the OED defines as being “[r]‌endered incapable of
action or use; incapacitated; taken out of service” (“Disabled, Adj. and N.”) –actually enables
these characters to perform certain essential narrative roles. Once we recognise the narrative
utility of disability, it is far easier to understand why these supposedly “incapacitated” characters
are cast in so many plots, marriage plots included.
In his compelling analysis of what he calls the “character-system” of nineteenth-century
fiction, Alex Woloch suggests that minor characters are the “proletariat” of the novel, performing
essential narrative labour without enjoying the narrative rewards allotted to the privileged,
major characters (14, 27). I am similarly suggesting that disabled characters are the worker bees
of the marriage plot, labouring without reward, and in many cases able to perform this labour
precisely because they are always already excluded from the possibility of reward (that is, from
taking the place of the hero or heroine and marrying the protagonist themselves). In what
remains of this chapter, I will outline three of the paradigms by which disabled characters grease
the wheels of the marriage plot, and the ways in which their ability to perform this particular
narrative work is dependent upon their disabled identity, as the text constructs it. In each case,
I will also offer an example in which this paradigm is subverted or troubled. The conventions
surrounding the representation of disabled characters enabled authors to thicken the problems
of their plots, as well as to cut through them: as we shall see, as often as they found ways to
put disabled characters to work in the service of the marriage plot, novelists seem to have been
unable to resist creating rebellious disabled characters who struggled against the plot role they
were assigned.
The queer go-between

In this first paradigm, the able-bodied hero’s disabled friend rights the temporarily derailed
marriage plot by drawing on the skills he has developed as a result of his feminised gender iden-
tity. Confined to the domestic sphere, the disabled friend has both the ability and the licence to
say and do things which are impossible for the hero constrained by a more rigid code of mascu-
linity. This enables him to resolve the tensions and misunderstandings clogging up the marriage
plot, and to mediate between hero and heroine.
One of the clearest instances of a disabled character who puts his fluid gender identity to
work in the service of the marriage plot in this way is Phineas Fletcher, the narrator of Dinah
Mulock Craik’s bestselling John Halifax, Gentleman (1856). Phineas Fletcher, affluent tradesman’s
son, and John Halifax, destitute orphan, are brought together in the first chapter by Phineas’s
need for physical assistance, and John’s ability to supply it. Having volunteered to help frail
Phineas home, John “safely and carefully” carries him up the stairs, “turn[ing] it into a jest so as
not to hurt” Phineas’s feelings, displaying a combination of physical strength and gentle kindness
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Clare Walker Gore
which completely captivates Phineas: “My heart cried after him with an irrepressible cry. What
I said I do not remember, but it caused him to return” (15). This initially one-sided relation-
ship soon becomes one of mutual aid; John continues to offer Phineas physical assistance and
emotional support, but in turn Phineas helps John to establish himself in the world. Not only
Phineas’s advocacy but his disability is essential to John’s first steps on the ladder which leads
to his eventual prosperity, since it is only because Phineas is too frail to take over the family
business that his father looks to John for an heir.
Phineas also performs a less tangible service for John, aiding him in his quest to be recognised
as a “gentleman” not only in terms of advancing his worldly position, but in terms of his
developing his character. As Mary Klages points out, Phineas acts as “the object that can dem-
onstrate and strengthen Halifax’s compassionate capacities…in order to establish that Halifax’s
claim to gentility is based first and foremost on his inextinguishable reservoir of tenderness and
fellow-feeling” (67). As the opening scene suggests, Phineas’s need for care and John’s answering
tenderness allay what Karen Bourrier identifies as “Victorian anxieties that the self-made man
is an uncaring social climber who is only interested in getting on in a narrowly material sense”
(63). John’s relationship with Phineas can be understood as a kind of dry run for marriage, in
which John is able to practise acting as a gentle man, before he becomes a “gentleman” and
marries for real. As Phineas happily reflects when John shields him from being jostled by crowds
when they visit the theatre together, “[i]‌f I had been a woman, and the woman that he loved, he
could not have been more tender over my weakness” (65).
As this formulation indicates, Phineas explicitly understands his disability as feminising, and he
explains his own inability to marry primarily in these terms. Before stating that “one…stricken
with hereditary disease, ought never to seek to perpetuate it by marriage”, he tells us that his
“character was too feeble and womanish to be likely to win any woman’s reverence or love”,
reiterating the distinction he has already made between his gender identity and John’s: “One June
morning I woke to the consciousness that I was twenty years old, and that John Halifax was –a
man; the difference between us being precisely as I have expressed it” (52–3). This assertion of
his own femininity (or at least androgyny) might prompt the reader to wonder whether Phineas
might in fact take the place of the heroine in the marriage plot, and their relationship become
less a preparation than a substitute for marriage.The scenes in which John and Phineas exchange
loving looks and silent embraces are certainly the most passionate in the book, and lead Talia
Schaffer to think of their relationship as a “quasi-marital partnership” and Holly Furneaux to
see it as a source of “this novel’s queer creativity” (Schaffer 171, 117). At least one contemporary
critic was perturbed by this aspect of Phineas’s characterisation: R. H. Hutton complained that
“[d]‌uring the early part of the tale, it is difficult to suppress a fear that Phineas Fletcher will fall
hopelessly in love with John Halifax, so hard is it to remember that Phineas is of the male sex”
(475). As if anticipating exactly this “perplexity” (Hutton 475), however, Craik speedily provides
John with a female love interest and marries him off before his twenty-first birthday. Moreover,
she puts Phineas’s femininity to work in the service of this marriage plot, having him act as medi-
ator between taciturn John and his modest beloved, Ursula.
Craik’s construction of ideal masculinity and femininity, personified by her hero and heroine,
makes it surprisingly difficult for her to bring about a marriage between them. When they are
thrown together in the same house, situations which should provide perfect opportunities for
romance are repeatedly defused by John’s chivalrous determination not to embarrass Ursula, and
her combination of naïve unconsciousness and perfect modesty. When Ursula does finally per-
ceive the sexual tension between herself and John, she absents herself from his company, behav-
iour of which John wholeheartedly approves. Although it is ostensibly their inequality in social
status which complicates their romance, the real source of the difficulty seems to be that Ursula
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is too womanly to encourage John to speak, and John too manly to do so; as Karen Bourrier puts
it, “John’s tremendous self-restraint threatens to bar him from the marriage plot precisely because
he cannot step outside his manly taciturnity to woo his wife” (71). As a man who is at one point
likened to “our own silent Severn” (225), John may have all the qualities of an ideal husband, but
lacks the wherewithal to become one. Eventually, he falls into a decline, becoming literally love-
sick, but since he is too stoical to make Ursula aware that he is ill, this is hardly helpful.
Fortunately, John and Ursula have a matchmaking go-between in Phineas, who, not sharing
John’s commitment to gentlemanly silence, decides to save John’s life by going to see Ursula
and telling her of John’s feelings. Indeed, this may be the real purpose of John’s illness in plot
terms: up until this point, Phineas has been keen to delay John’s marriage and so preserve the
exclusivity of their relationship, but the prospect of losing John altogether drives him to pro-
mote the match. Ursula’s response to Phineas’s appeal is, characteristically, wordless, but her
“deep, soft” blush (184) shows that she has understood, and by the end of the chapter, she is
engaged to John. These inarticulate lovers, who “did not speak, but only clasped hands” (189),
are scarcely more communicative after Phineas’s intervention: John never does declare his
love in so many words, while Ursula communicates her feelings simply by giving a “low, faint
cry” on being told that he plans to emigrate (190). Craik seems to see this silence as a cru-
cial part of their idealised relationship, in which John does not relax his reserve nor Ursula
compromise her modesty, staging multiple scenes in which the couple separately refuse to
articulate their feelings to others. She is able to bring their unspoken passion to a point from
which it can be taken as read, however, only because she has in Phineas an interpreter, who as
a “womanish” go-between is capable of being more explicit than the ideally feminine Ursula
and less restrained than the ideally masculine John. What Sally Mitchell identifies as the medi-
ating role of the invalid narrator, who “bridges the separate spheres of woman and man”
(47), turns out to make him as invaluable to the marriage plot as he is in making John the
“Gentleman” of the novel’s title.
In Charlotte M. Yonge’s The Heir of Redclyffe (1853) –another bestseller which made its
author’s name –a similar role is played by Charles Edmonstone, brother of the heroine Amy
and cousin and close friend to the hero, Guy. Confined to the domestic sphere and feminised
by invalidism, Charles has a weakness for impulsive speech, which he puts to good use when
Guy is falsely accused of gambling and his relationship to Amy broken off. Guy is prevented by
his code of honour from revealing the real reasons behind his actions; suffering from no such
constraints, Charles is able to make enquiries. When he questions the marplot Philip about the
accusations against Guy, he makes full use of the licence his ill health affords him:
Philip could not set Charles down in his present state, and was obliged to submit to
a cross-examination, in which he showed no abatement of his natural acuteness, and
unsparing as he always was, laid himself under no restraint at all. Philip was compelled
to give a full history of his researches; and if he had afforded no triumph to Guy,
Charles revenged him.
(Yonge 206)
Although Charles, unlike Phineas, is unable immediately to bring the lovers together, he does
give voice to the reader’s hope for a happy ending to the temporarily thwarted marriage plot,
and, when the lovers are reunited, provide them with opportunities to be together through
chaperoning them. After Guy’s death, Charles becomes the widowed Amy’s life-companion and
guardian to her fatherless daughter, making himself, as Amy puts it, “ ‘of wonderful use to every
one” ’  (463).
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Even busier in making himself “of wonderful use” is Wilkie Collins’s Ezra Jennings in The
Moonstone (1868), the mixed-race doctor’s assistant, who suffers from a painful “internal com-
plaint” and consequent addiction to opium, and is, in his own words, one of those “ ‘men [who]
are born with female constitutions’ ” (369). This description not only serves to highlight the
romantic intensity of his feelings for the hero, Franklin Blake, but also indicates why he is able
to right Franklin’s marred marriage plot when the bluff detective, Sergeant Cuff, cannot. Using
his feminine sensitivity and receptiveness, Jennings manages to interpret the ramblings of the
feverish Mr Candy, working out that Franklin was dosed with opium on the night when the
moonstone was stolen. He then persuades Franklin to be drugged once more so he can re-enact
the theft, observed by witnesses. Like Phineas and (to a lesser extent) like Charles, Ezra brokers
a marriage which will exclude himself, putting the very femininity which shuts him out of the
marriage plot to work in the service of the marriageable but sadly inarticulate hero.
A tragic twist on this plot line is offered by George Eliot in The Mill on the Floss (1860). Her
disabled anti-hero Philip Wakem, “half-feminine in sensitiveness” (331), has much in common
with Craik’s “womanish” Phineas Fletcher, and Karen Bourrier reads Philip’s mutually antag-
onistic relationship with athletic, unreflecting Tom Tulliver as a kind of writing-back to Craik’s
idealised portrayal of Phineas and John’s relationship (76). His relationship with Maggie, how-
ever, also revisits and reverses Craik’s plotting of Phineas and Ursula’s relationship. Rather than
forming a passionate attachment to another man, and then promoting his marriage to the
heroine –as do Phineas, Charles and Ezra –feminised Philip longs to be cast as the heroine’s
lover himself, and takes advantage of what Phineas calls the “sisterly trust and sisterly kindness”
(Craik 131) with which she treats him, as a man beyond the pale of ordinary propriety, in
order to make love to her. The tragedy of Philip’s position, as Eliot portrays it, is that although
he is uniquely capable of sympathising with our frustrated heroine, because as a disabled man
he shares so many of her experiences as a woman in patriarchal society, he is totally unable to
awaken her sexual desire, on account of the very disability that makes them in other ways so
compatible. Maggie’s inability to feel desire towards Philip is repeatedly linked to his physical
frailty and associated femininity, for example when she “stoop[s]‌her tall head to kiss the pale
face that was full of pleading, timid love –like a woman’s”, and is conscious of “sacrifice” rather
than ecstasy (Eliot, The Mill on the Floss 337). She is disastrously drawn instead to the handsome,
able-bodied Stephen Guest. There is no mystery as to his appeal, which is shown to be rooted
in the “strength” of his “firm arm”, a kind of strength which, the narrator tells us, is “strangely
winning to most women…meet[ing] a continual want of the imagination” (408).
What makes The Mill on the Floss so powerfully painful is that Maggie’s “natural” desire
for handsome Stephen pulls her away from the “ ‘pity and faithfulness and memory’ ” which
Maggie herself insists “ ‘are natural too’ ” (457). Committed to Christian ethics but living in a
modern world governed not by Providence but by the laws of natural selection, Maggie is torn
between these two senses of the “natural”. Our wish that it were possible for her to love Philip
is made inextricable from our wish for a return to a world of happy endings, in which realist
and providential plotting did not pull away from one another. Eliot’s recasting of the queer
go-between as a tragic figure enables him to embody her tragic sense of reality: this rebellious
queer go-between plays as essential a role through his complication of his novel’s marriage plot
as Phineas, Charles and Ezra play through facilitating the marriage plots of theirs.
The healing storyteller

The figure of the healing storyteller has much in common with the queer go-between, but their
power to aid others’ marriage plots is rooted less in the fluidity of their gender identity than in
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their superior powers of naming and narration, which are linked to their disability. Dickens’s
Jenny Wren in Our Mutual Friend (1865), for example, is depicted as enjoying privileged access
to an imaginative realm through her experience of chronic pain. As “ ‘a little child’ ” unable to
play with other children, Jenny recounts how she used to “ ‘see’ ” children “ ‘in white dresses…
in long bright slanting rows…[who] swept about me and took me up and made me light’ ”
(Dickens, Our Mutual Friend 239). She is still “ecstatic” when she remembers these visions, and
her powers of imagination have not waned: she now “ ‘smell[s]‌flowers’ ” as she works, although
as she says, “ ‘this is not a flowery neighbourhood’ ” (239). Jenny is not merely a fantasist, how-
ever; the sustenance she draws from these moments of imaginative escape and transformation
enable her to face the reality of her circumstances, and to name them. She names her father, for
example, her “child” –usually her “ ‘troublesome bad child’ ” (240) –in order to call attention
to the reversal of their roles. Where Dickens’s other abused daughters, from Agnes Wickfield to
Little Dorrit, suffer parental neglect and abuse in silence, Jenny forces others to acknowledge the
reality of her relationship with her alcoholic, dependent father, whom she financially supports
and attempts to care for, by the name she gives him. She also names herself, both “bestow[ing]
upon herself the appellation of Jenny Wren”, a character associated in nursery rhyme with both
sickness and with healing, and that of “ ‘the person of the house’ ”, making clear her entitlement
to respect as the breadwinner and head of the household (333, 222). Jenny’s power of story-
telling is such that she sometimes seems a kind of avatar for her author himself; as Hilary Schor
points out, “she fictionalises in much the way Dickens does…Like Dickens, she turns horror
into comic relief and unexpected blessing” (201).
This power of naming enables Jenny to rescue Lizzie Hexham from the prospect of ruin
or heartbreak, rewriting what seems to be the seduction narrative of her relationship with the
middle-class Eugene Wrayburn as a marriage plot. Jenny has already used her powers as a story-
teller to draw from Lizzie a confession of her love for Eugene, persuading Lizzie to imagine her-
self in the position of a wealthy lady so that she is free to articulate her heart’s desire (Dickens,
Our Mutual Friend 349). As Helena Michie observes, Jenny perceives “both pain and desire in
Lizzie”, and in enabling her to tell her story in fantastic form, “begins to construct a self, a ‘lady,’
a ‘wife,’ for her at their intersection” (211). Jenny’s own experience of physical pain enables her
both to sympathise with Lizzie’s sorrow, and to alleviate it through her hyper-effective nursing
of Eugene when he lies at death’s door after being attacked by his jealous rival for Lizzie’s hand.
Because he remembers her ability to transcend physical pain through “fancy”, Eugene sends for
Jenny, and her unparalleled sensitivity and intuitiveness as a nurse enable her to act “as an inter-
preter between this sentient world and the insensible man” (737, 739). While half-conscious,
Eugene keeps repeating “one word, Lizzie…in a hurried and impatient manner, with the misery
of a disturbed mind”; as he comes to, apparently feeling himself on the point of death, he begs
his friend Lightwood to “ ‘[h]‌old [him] here…Stop [him] wandering away’ ” (240). Lightwood
desperately appeals to Jenny to “ ‘only give [him] the right word!’ ”, which she duly does. The
word, it transpires, is “wife”. By naming Eugene’s unnamed desire as the desire to marry Lizzie,
rather than seduce her, Jenny effectively authors their marriage plot: Eugene seizes on the idea,
marries Lizzie and duly recovers. In this whispered exchange we are, as Melissa Free explains,
shown Jenny in the act of “transforming the working girl into a lady and wife –and in so doing
sacrificing her beloved Lizzie to Eugene” (269).
As Free highlights here, Jenny suffers considerable loss in authoring Lizzie’s marriage plot.
Throughout the novel, Jenny has fantasised about a future husband who would take Lizzie’s
place as her companion and assistant, whilst lamenting his inevitable inferiority to Lizzie her-
self; when she is supplied with a love interest in the physically strong but slow-witted Sloppy,
both her fantasy and her fear seem to be realised. Yet if there is an element of loss in Jenny’s
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narrative trajectory, and if she is forced to some extent to work against her own interests, she
is yet a powerful figure, able to take up more space as the “person of the house” and author of
her own story than many of Dickens’s female characters are allowed. In her self-assertiveness
and sharp wit, she resembles Anthony Trollope’s Madeline Neroni in Barchester Towers (1857) –a
very different kind of character, but one who also uses her power as a storyteller in the service
of the marriage plot.
The once excessively mobile Madeline chooses never to appear in public except recumbent
on her couch, after the husband she had “no alternative” but to marry has caused irreparable
injury to one of her legs through his “violence” (Trollope 75–6). A fallen woman in both
senses, Madeline is anything but repentant, arriving in Barchester determined “to have parsons
at her feet” (86). She successfully uses her powers as a storyteller to mesmerise the clergymen
of Barchester, inviting them to sit on the corner of her sofa and hear her “ ‘sad story’ ” (98).
Through these performances, Madeline effectively overwrites her identity as a fallen woman –
what her arch-enemy Mrs Proudie calls “ ‘an intriguing Italian woman, half wife and half not!’ ”
(104) –with her disabled identity, casting herself as the helpless, angelic invalid familiar to
readers from other novels. Like Jenny, Madeline names herself (“How she had come to con-
coct such a name for herself it would be difficult to explain”) and does this so successfully that
the Bishop takes her for a visiting noblewoman rather than “the daughter of one of his own
prebendaries” (77, 101). Also like Jenny, she shows up the pretensions of the upstart men she
encounters, most notably the oleaginous Obadiah Slope. Enjoyably subversive as Madeline’s
storytelling is, however, she ultimately uses her narrative powers in the service of the marriage
plot, bringing together sweet Eleanor Bold and worthy Mr Arabin, interpreting their motives
to one another and inspiring each, respectively, to make and to accept a proposal of marriage.
In her dealings with both of them, she claims the privileges of an invalid in speaking freely
on ordinarily taboo subjects, and uses the patter she has perfected in telling her “sad story” to
“soften” Eleanor up (206).
Wilkie Collins creates a similarly likeable but considerably more wicked storyteller in his
legless villain, Miserrimus Dexter, in The Law and the Lady (1875). I call him a villain because he
works against the plot’s legitimate design, pretending to aid our detective heroine Valeria in her
quest to clear her husband of suspicion of his first wife’s murder, and all the time concealing his
knowledge of what really happened because he wants the hapless Eustace to suffer. However,
the reader is not encouraged to feel any straightforward kind of antipathy towards Miserrimus.
Certainly, his disability is sensationalised in such a way that he is made to seem both more
and less than human, his leglessness a kind of monstrosity and his wheelchair use terrifying,
rendering him a “fantastic and frightful apparition, man and machinery blended in one –the
new Centaur, half man, half chair” (206).Yet the mischievous pleasure he takes in his power to
shock others makes him the most entertaining character in the novel. In the scene just quoted,
he is amusing himself by a private theatrical performance, in which he casts himself as great
characters from history, and once he is aware of Valeria’s interest in him, his performances only
become more extraordinary. Whenever he receives Valeria at his gothic mansion, which he has
effectively turned into a theatrical set, furnishing it with the tanned skin of a French marquis
and a (literal) skeleton in the closet, among other curiosities, he holds her rapt with the stories he
tells, and what Valeria’s censorious mother-in-law calls the “show [he makes] of himself ” (218).
In addition to the entertainment they offer both heroine and reader, these performances
also amount to a commentary on Valeria’s own struggles and the unspoken injustices of the
marriage plot she has entered into. Dressed in pink silk, adorned with bracelets and skilfully
practising the arts of embroidery and gourmet cookery, Miserrimus refuses to abide by the
gendered code of behaviour which assertive Valeria struggles to live by. In his exaggerated
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claims of male superiority, he holds up a mirror to the absurdity of Valeria’s own determin-
ation to keep up the fiction of her weak-willed husband Eustace’s authority over her, and in
his passionate admiration for Eustace’s supposedly ugly first wife, he challenges the supposed
objectivity of the beauty standards to which Valeria clings. In his passionate overtures to Valeria
herself, Miserrimus can be read as upending the expectations attached not only to the role of
the healing storyteller, but also to that of the queer go-between: having subverted gender codes
with his choice of feminine costume, adornment and leisure activities, he then aggressively acts
on the heterosexual desires the queer disabled character is assumed to be without, and works
against the marriage plot he is expected to promote.
In the end, Miserrimus falls silent whilst he is trying to tell one last story, a narrative in
which his love for Eustace’s first wife was returned rather than unrequited, in which she was
murdered by her perfidious maid rather than committing suicide because Miserrimus showed
her the diary in which Eustace expressed his aversion towards her, and in which he him-
self is guiltless of her death. Miserrimus never gets to the end of this final story, struck dumb
by the “latent insanity” which Valeria sees as his “Nemesis” (281, 346). Yet he does succeed,
I think, in tempering our satisfaction at Valeria’s success in solving the mystery and righting her
derailed marriage plot. The vividness with which he has communicated his love for the first
Mrs Macallan makes it difficult for us to take unalloyed pleasure in the triumph of the second,
so that when Valeria weeps at the novel’s ending, thinking of “those other wives” less fortunate
than herself, we are bound to think of Miserrimus’s beloved Sara, the less-loved first wife of the
graceless Eustace (399). Right up to the point when he loses his mind, Miserrimus tries to exert
control over the narrative, and although he fails in this, he does succeed in providing a kind of
counter-narrative, which is sufficiently compelling to prevent either Valeria or the reader from
fully assenting to the narrative order restored by the novel’s conclusion.
The angel with a legacy

In this paradigm, the selflessness, generosity and spirituality imputed to the invalid approaching
death is used to facilitate the marriage of the surviving hero and heroine. The angel with a
legacy typically gifts the able-bodied characters whatever they need to marry, in material, moral
or narrative terms, and then clears the stage by dying. Dickens’s Smike in Nicholas Nickleby
(1838), for example, effectively prepares Nicholas for his eventual marriage to Madeline Bray
by acting as the wife-substitute who develops his emotional sensitivity and capacity for tender-
ness and care, but at the point when he might impede the neat conclusion of both Nicholas
and Kate Nickleby’s marriage plots (by getting in Nicholas’s way, and being in love with Kate
himself, respectively), he helpfully succumbs to consumption and dies. Moreover, Smike’s death
proves the undoing of his villainous father, Ralph, who commits suicide when he learns that his
son did not die in childhood but endured years of suffering at the hands of his own accomplice,
Squeers, and is now beyond the reach of restitution. In a sense, Ralph’s destruction is Smike’s
last gift to his beloved Nicholas, and one which definitively clears his hitherto much-obstructed
path to marriage.
Thinking of Smike as an angel with a legacy draws attention to the narrative work performed
by this apparently passive character, alerting us to the ways that his neediness and his frailty actu-
ally help Nicholas to achieve the marriage and maturity that, together, mark the successful con-
clusion of his Bildungsroman. A very different character who performs a strikingly similar plot
role is Charlotte Yonge’s Felix Underwood in The Pillars of the House (1873). His convenient
contraction of consumption clears the way for his brother Lancelot’s marriage plot: Gertrude
Underwood is too much taken with the perfections of Felix ever to notice the charms of his
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more prosaic younger brother until after Felix’s death, when she transfers her affections to
Lancelot, whose happiness therefore seems a legacy from his ever-beneficent eldest brother.
Competent Felix is unlike Smike in every way, except for the fact that his frail body ultimately
functions as the sign of his otherworldliness, and his timely departure from a world he seems too
good for smooths the way for his beloved companion’s marital happiness.
George Eliot engages with this paradigm in an especially fascinating way in her final novel,
Daniel Deronda (1876), which contains a pair of terminally ill characters who relate to their
plot role as angels with legacies in diametrically opposing ways. Her visionary, consumptive
Mordecai plays the role of disabled angel with a legacy to perfection: his death is made coex-
tensive with the hero’s marriage to the heroine (his sister Mirah), while his terminal illness is
the necessary condition for Daniel’s inheritance of his epic mission to lead the Jewish people
to their homeland. It is because Mordecai is terminally ill that he seeks what he calls “a more-
executive self ” to fulfil his Zionist mission, “a man who would have all the elements neces-
sary for sympathy with him, but in an embodiment unlike his own” (405–6). Until he meets
Mordecai, Daniel has all the qualities needed by a novelistic hero –he is handsome, able, wealthy
and good –but has not yet found a plot in which he can star; as the narrator tells us, his “too
reflective and diffusive sympathy was in danger of paralysing him in that indignation against
wrong and that selectness of fellowship which are the conditions of moral force”, so that “what
he longed for was either some external event, or some inward light, that would urge him into
a definite line of action, and compress his wandering energy” (308). The longed-for “external
event” is provided by his meeting with Mordecai, whose “yearning for transmission” (405) is in
turn answered by his meeting with Daniel, who is, as Oliver Lovesey points out, “recognized as
Mordecai’s executive self partly as he represents a eugenicist’s ideal” (509). Although good health
may be the last thing anyone remembers about Daniel, it is in fact a vital qualification for his
newfound role as Mordecai’s spiritual heir.
Daniel’s marriage to Mirah is a similarly forgettable aspect of Daniel Deronda: mention of
the marriage plot in relation to this novel is more likely to conjure Gwendolen’s memorably
miserable marriage to Grandcourt, or her dreadful disappointment when she realises that Daniel
is not going to ask her to marry him, and stretches out her arms with the “smothered” cry “ ‘I
am forsaken!’ ” (690).Yet Daniel’s marriage to Mirah is an essential part of his assumption of the
role of Jewish patriarch and leader; with the ideally feminine, deeply pious and spotlessly pure
(in both moral and racial senses) Mirah by his side, he will truly be “the grandson [his grand-
father] wanted” (568), transmitting his intellectual, spiritual and ethnic inheritance to the next
generation of Derondas through his (presumably fruitful) marriage to the perfect Jewish wife.
Although Daniel meets Mirah before Mordecai, he feels unable to declare his feelings while she
is dependent upon him; it is not until she is restored to her brother’s care that he is able to pro-
pose to her, and their shared relationship with Mordecai sets the seal on their relationship.Their
marriage, in fact, is more likely to strike the reader as the physical manifestation of Daniel’s
spiritual union with Mordecai, what Mordecai calls “ ‘the marriage of [their] souls’ ” (643), than
a consummation devoutly to be wished for its own sake. The passion that throbs through the
novel’s final chapter arises not from Daniel and Mirah’s desire to be together, which is formally
recognised in their wedding, but from Mordecai’s desire to leave his own soul to Daniel as a
kind of spiritual inheritance, a desire that is realised as he dies on the last page of the novel:
“Death is coming to me as the divine kiss which is both parting and reunion –which
takes me from your bodily eyes and gives me full presence in your soul.Where though
goest, Daniel, I shall go. Is it not begun? Have I not breathed my soul into you? We
shall live together.” (695)
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Mordecai treats his own soul, here, as something he can gift to Daniel, along with the role of
Zionist leader. Both these gifts are dependent upon his own death, and so, too, is Daniel’s unen-
cumbered journey to the East to start a new life with Mirah. To put it bluntly, the novel needs
Mordecai to die, so that Daniel can come into his inheritance –and, like a true angel with a
legacy, Mordecai shows no resentment whatsoever at this state of affairs, longing for his own
death so that Daniel can make a start.
Eliot includes another disabled character in Daniel Deronda who plays an analogous
role: Daniel’s mother, Leonora Alcharisi, who leaves Daniel what Mordecai calls “ ‘the sacred
inheritance of the Jew’ ” (428) when she reveals his Jewish parentage and gives him the chest of
books and papers which constitute his intellectual and spiritual inheritance. As Daniel gratefully
tells her, she has “ ‘restored [him] to [his] inheritance’ ” (567) –and also, of course, made possible
his marriage plot, since Mirah has made it clear that she will never marry outside the Jewish
faith.Yet Leonora rails against her part in leaving Daniel this legacy, explaining that she does not
“ ‘consent’ ” but only “ ‘obey[s]‌something tyrannic’ ” (541). She plays the role of legator against
her deepest wishes, and only because she has been weakened by physical illness to the point that
she can no longer resist her father’s spirit. As she explains to Daniel: “ ‘it is as if the life I have
chosen to live, all thoughts, all will, forsook me and left me alone in spots of memory, and I can’t
get away: my pain seems to keep me there…when my strength goes, some other right forces
itself upon me like iron in an inexorable hand’ ” (545).
Whereas for Mordecai the spiritual porousness which makes him a conduit for Daniel’s
spiritual inheritance is the ultimate compensation for bodily suffering and imminent death,
for Leonora it represents a nightmarish defeat of her will; she has become, she laments, the
“ ‘makeshift link’ ” her father always wanted to make her in a chain of inheritance (541). Unlike
Mordecai, Leonora has no wish to lose herself in the wider current of her people’s national
destiny: all her life, she tells Daniel, she has wanted “ ‘to live out the life that was in [her], and
not to be hampered by other lives’ ” (536–7). Although disability forces Leonora to acquiesce to
her role in the epic plot of her people’s national destiny, she resists this role to the last, voicing a
memorable protest against the use the novel’s plot makes of her.
When Henry James revisited the plots of Daniel Deronda in The Portrait of a Lady (1881), he
would collapse together the figures of Mordecai and Leonora in his consumptive legator Ralph
Touchett, a character whose material legacy to the heroine has mixed motives and disastrous
results, and yet whose moral legacy, imparted on his deathbed –“ ‘if you’ve been hated you’ve
also been loved’ ” (569) –proves redemptive. The figure of the angel with a legacy re-emerges
in his late phase in the figure of Milly Theale, the terminally ill heiress whose fortune proves
an irresistible temptation to those around her, who attempt to wrest it from her rather than
passively waiting for her to leave it to them after her death. Whether the legacy she eventu-
ally leaves Merton Densher, in spite of his perfidy, is still charged with redemptive power, is
a question that readers of The Wings of the Dove (1902) must, painfully, decide for themselves.
The uncertain success of the disability plot provides a fittingly ambiguous ending to this proto-
modernist novel in which Victorian plots, like Milly herself, are powerfully attractive, but seem
unable to survive in the modern world.
Conclusion
An essay of this length is necessarily suggestive, rather than exhaustive, and I have sketched here
only a few of the ways in which disabled characters relate to the marriage plot in Victorian
novels. My hope, however, is that even an excursion as brief as this one across the field of
Victorian fiction, plotting disabled characters in relation to particular plot lines, makes visible
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the vital part they play in keeping the wheels of plot turning. When we can clearly see the
dependence of able-bodied characters on the work performed by their disabled companions,
the absurdity of attributing disability in the dictionary’s second sense of the word (“an inability
to function”) to those who are “disabled” in the first (“having a physical or mental condition
which limits activity, movement, sensations, etc.”), becomes evident (“Disabled, Adj. and N.”).
As the space between these two senses of the word “disability” is revealed as a yawning gulf, my
hope is that, as readers, we will become ever more attuned to the work being done by disabled
characters and by the dis/ability system itself, and thereby become ever more sceptical of its
distorting categories, and ever more alive to the contradictions, the complexities and the cap-
abilities that it works to conceal.
Notes
1 A reference to Edward Bulwer-Lytton’s 1834 novel The Last Days of Pompeii, in which the blind Nydia
is driven to suicide by the pain of unrequited love.
2 For a more detailed discussion of these issues, see Martha Stoddard Holmes,“Marital Melodramas: Disabled
Women and Victorian Marriage Plots”, Fictions of Affliction, pp. 34–72.
Works cited
Bourrier, Karen. The Measure of Manliness: Disability and Masculinity in the Mid- Victorian Novel. Ann
Arbor: University of Michigan Press, 2015.
Bulwer-Lytton, Edward. The Last Days of Pompeii. London: Richard Bentley, 1834.
Collins, Wilkie. The Law and the Lady. Oxford: Oxford University Press, 2008.
———. The Moonstone. Oxford: Oxford University Press, 2008.
Craik, Dinah Maria Mulock. John Halifax, Gentleman. Stroud: Nonsuch, 2005.
Dickens, Charles. Our Mutual Friend. Oxford: Oxford University Press, 2008.
———. Nicholas Nickleby. Oxford: Oxford University Press, 2008.
“Disabled, Adj. and N.”. OED Online. Oxford English Dictionary. Web. 4 October 2019.
Eliot, George. Daniel Deronda. Oxford: Oxford University Press, 2009.
———. The Mill on the Floss. New ed. Oxford: Oxford University Press, 2008.
Free, Melissa. “Freaks That Matter: The Doll’s Dressmaker, the Doctor’s Assistant, and the Limits
of Difference”. Victorian Freaks: The Social Context of Freakery in Britain. Ed. Marlene Tromp.
Columbus: Ohio State University Press, 2008, 259–82.
Furneaux, Holly. “Negotiating the Gentle-Man: Male Nursing and Class Conflict in the ‘High’Victorian
Period”. Conflict and Difference in Nineteenth-Century Literature. Ed. Dinah Birch and Mark Llewellyn.
Basingstoke: Palgrave Macmillan, 2010, 109–25.
Holmes, Martha Stoddard. “Marital Melodramas: Disabled Women and Victorian Marriage Plots”. Fictions
of Affliction: Physical Disability in Victorian Culture. Ann Arbor: University of Michigan Press, 2004, 34–72.
Hutton, Richard Holt. “Novels by the Authoress of ‘John Halifax, Gentleman’”. North British Review 29.58
(1858): 466–81.
James, Henry. The Portrait of a Lady. Oxford: Oxford University Press, 2009.
———. The Wings of the Dove. Oxford: Oxford University Press, 2009.
Klages, Mary. Woeful Afflictions: Disability and Sentimentality in Victorian America. Philadelphia: University of
Pennsylvania Press, 1999.
Lovesey, Oliver. “The Other Woman in ‘Daniel Deronda’”. Studies in the Novel 30.4 (1998): 505–20.
Michie, Helena. “‘Who Is This in Pain?’: Scarring, Disfigurement, and Female Identity in ‘Bleak House’
and ‘Our Mutual Friend’”. NOVEL: A Forum on Fiction 22.2 (1989): 199–212.
Mitchell, Sally. Dinah Mulock Craik. Boston: Twayne Publishers, 1983.
“Poor Miss Finch”. Saturday Review of Politics, Literature, Science and Art 33.853 (1872): 282–3.
Schaffer, Talia. Romance’s Rival: Familiar Marriage in Victorian Fiction. New York: Oxford University
Press, 2016.
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Schor, Hilary M. Dickens and the Daughter of the House. Cambridge: Cambridge University Press, 1999.
Trollope, Anthony. Barchester Towers. Oxford: Oxford University Press, 2008.
Woloch, Alex. The One Vs. the Many: Minor Characters and the Space of the Protagonist in the Novel.
Princeton: Princeton University Press, 2003.
Yonge, Charlotte M. The Heir of Redclyffe. London: Macmillan, 1888.
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11
AFRO-MODERNISM AND
BLACK DISABILITY STUDIES
Jess Waggoner
Introduction
Afro-modernism, as a broader and more geographically and temporally expansive alternative
to “the Harlem Renaissance,” can be understood as black experimental artistic protest of Jim
Crow-era segregation logics. Housing, employment, and educational segregation and discrim-
ination are among the innumerable inequities addressed by Afro-modernism. However, schol-
arship frequently overlooks protests against eugenic thought and Jim Crow medical segregation
and the ways in which this influenced Afro-modernist engagements with disability and illness.
This chapter will first provide historical background on the relationship between blackness and
disability before the mid-century, and then turn to Langston Hughes’s short story collection
The Ways of White Folks (1934) to discuss the myriad ways Afro-modernist authors represented
and interrogated disability. I close with a brief discussion of Afro-modernist artistic engagements
with psychiatric reform.1
From some perspectives, Afro-modernism was an artistic and cultural demonstration of black
value that countered assertions of black civic unfitness. However, while W.E.B. Du Bois and
his contemporaries focused on the necessity of uplift as anti-racist discourse, authors such as
Langston Hughes, Wallace Thurman, and Zora Neale Hurston used their artistic production
to trouble the imperatives of respectability politics, in part by offering humanizing accounts of
black disability, illness, sexuality, and poverty (Waggoner 508).
Heeding Christopher Bell’s call to end the reign of “white disability studies,” black disability
studies turns to the eras of enslavement and eugenics to account for the present absence of
disability in black cultural production. Disability historian Douglas Baynton argues that “dis-
ability arguments” were frequently used as “justifications of slavery…and of other forms of
unequal relations between white and black Americans after slavery’s demise” (37). This resulted
in what Jennifer James identifies as a pervasive “desire to enact ‘damage control’ by policing
and correcting politically detrimental representations of blackness” (137). If the attribution of
disability to black bodies and minds became a justification for violence, then the task of black
leaders was to disentangle blackness and disablement and render blackness as healthy, productive,
and deserving of civic inclusion. While some leaders rejected the ways in which blackness had
become analogous with disability, others such as W.E.B. Du Bois, Elmer Carter, and Kelly Miller
maintained a eugenic belief in degeneracy across white and black populations. In the June 1932
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issue of Birth Control Review, for example, Miller and Carter evoked an ill, degenerate “under-
class” that placed the achievements of the black elite into high relief (Du Bois, “Black Folk and
Birth Control,” 169–173).
This underclass, some argued, existed in both black and white communities. Many Afro-
modernists adopted similar modes of eugenic thought to render dysgenic whiteness.The white,
mentally disabled, and violent Earl in Hurston’s Seraph on the Suwanee (1948); the wealthy, blind
Mrs. Dalton in Richard Wright’s Native Son (1940); and, as I will explore here, the black and
white disability woven throughout Hughes’s The Ways of White Folks –all testify to the powerful
hold of eugenic thought and its perceived ability to be used as what I have termed elsewhere
“eugenic anti-racism” (Waggoner 509).
Medical segregation
Despite the discourses that encouraged African Americans to create distance from disability’s
connotations of civic unfitness, the social realities of violence, trauma, and health disparities
within African American communities generated a parallel discourse that urgently drove leaders
and artists to address these issues. In a 1902 Atlantic Monthly essay, “Of the Training of Black
Men,” Du Bois points to the educational and professional gaps that keep African Americans
from accessing basic needs:
In the professions, college men are…healing and preventing the devastations of dis-
ease…All this is needful work. Who would do it if Negroes did not? How could
Negroes do it if they were not trained carefully for it? If white people need colleges
to furnish teachers, ministers, lawyers, and doctors, do black people need nothing of
the sort?” (295)
Du Bois sought change from the “higher training” of the middle and upper classes. At times in
his early career he was inclined to see the lower classes –not taking precautions against illness
and using folk methods for healing instead of official medical care –as a partial engine of the
continued health disparities that he believed trained black doctors would assuage.
The hesitancy to seek medical care and its frequent economic and geographical impossibility
was spurred by years of medical distrust (cf. Washington and Smith). Instances such as the pro-
liferation of scientific racism as a means of justifying enslavement, painful procedures enforced
on black enslaved women by J. Marion Sims for early gynecological research, and the cruelty
of the Tuskegee experiments all generated a justifiable black distrust of medical treatment and
scientific research.
While Zora Neale Hurston’s “My Most Humiliating Jim Crow Experience” (1944) discusses
her harrowing encounter with a whites-only doctor’s office, Langston Hughes’s short essay “On
Human Loneliness” (1944) describes a more abstract scene of human alienation incited by med-
ical scenes of dentists’ and doctors’ offices. Hughes draws a comparison between the creeping
dread inherent to the doctor’s office and the “death house in a great prison,” evoking a time
when he visited the “Scottsboro boys…at Kilby prison in Alabama” (232). Although Hurston’s
recounting of her medical abuse at the hands of a white doctor is more explicit in its protest of
segregation, Hughes draws a comparison between the Jim Crow logics of young men awaiting
death for a crime they didn’t commit with the isolation of the medical sphere.
Folk medicine was one mode by which communities could resist medical abuse and
alienation. While Hurston defended and preserved these practices, leaders such as Du Bois
admonished users of folk medicine for their purported gullibility. Furthermore, those who did
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not seek what was deemed appropriate healthcare, or those who were perceived as performing
incorrect hygiene practices or reproducing dysgenically, were blamed for perpetuating public
health crises like tuberculosis.
With diseases such as tuberculosis disproportionately affecting poorer African Americans at
a higher rate, medical professionals and public health administrators debated whether this was
due to an innate biological susceptibility or a demonstrable lack of proper health conditions and
care. As Claudia Marie Calhoon writes, “municipal public health efforts often focused public
attention on the black threat of contagion to the white community, perpetuating harmful
stereotypes about African Americans” (102). Many activists and artists were aware that an
increased awareness of how disease affected marginalized populations came with more sur-
veillance, prejudice, and invasion.Yet, despite fears of reifying the pathologization of blackness,
disability and illness featured prominently in Afro-modernist work.
Caregiving and exploitation in Langston Hughes’s “Berry”

Langston Hughes’s 1932 short story collection The Ways of White Folks primarily uses disability
as a narrative device to portray white racism as a pervasive illness. However, instead of dismissing
this device solely as “narrative prosthesis” (Mitchell and Snyder 53), we must investigate the
underlying justifications for rendering whiteness itself as disabled in a variety of ways throughout
Hughes’s collection. These disabilities and illnesses are frequently manifested as forms of white
racial melancholia, where white existence is inextricably bound up in a dependence upon
blackness (Cheng xi). Once blackness revolts, whiteness can no longer function. In “A Good
Job Gone,” the narrator describes the downfall of his wealthy white employer, Mr. Lloyd, who
falls in love with a black nightclub singer named Pauline. Lloyd is sent to a “sanitorium” after
Pauline rejects him. “Red Headed Baby” follows a white sailor who returns to port after three
years to discover that he has a deaf mixed-race child. As in “Cora Unashamed,” in which Cora,
a domestic worker, becomes attached to her white charge Jessie, a “stupid” and “plump, dull,
freckled girl, placid and strange” (39), the following story, “Berry,” addresses not only the preva-
lence of underpaid black caregiving but also the possible intimacies between disability and
blackness.
The protagonist of “Berry,” a young black man named Milberry, is underpaid eight dollars
a week to work at a summer living facility for white disabled children called “Dr. Renfield’s
Summer Home for Crippled Children” (96). Milberry is eventually fired for accidentally
breaking a child’s wheelchair. It is through Milberry’s perspective that we come to see the
unsettling aspects of the home. He notices that
[t]‌he Summer Home was run for profits from the care of permanently deformed chil-
dren of middle class parents who couldn’t afford to pay too much, but who still paid
well –too well for what their children got in return. [He] saw the good cans opened
for company, and the cheap cans opened for the kids. (100)
Dr. Renfield’s Summer Home for Crippled Children, built near the beach five miles from
Jersey City, was possibly based on The Children’s Sea-Shore House in Atlantic City, New Jersey,
the “first pediatric rehabilitation hospital” in the United States that marketed the power of out-
door and marine-based rehabilitation for convalescence.
Milberry grows fond of the children under his charge and spends his spare moments playing
with them on the beach: “Somehow, he thought he wouldn’t even stay there and work if it
wasn’t for the kids. For the children grew terribly to like Milberry” (99). Milberry’s approach to
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the disabled residents lies somewhere between pity and identification. He senses there is “some-
thing phoney about the whole house –except the little crippled kids there like himself because
they couldn’t help it” (98). In this moment, instead of counter-identifying with the disabled
children who were sent to the home (against their own will, Hughes suggests), Milberry aligns
himself with their conditions, realizing he is in part working at this home because he is unable
to find better employment due to racism, and “had been hungry for weeks” (98). While the
adult workers at the institution “only spoke to him when they had some job for him to do, or
when they were kidding him about being dark, and talking flat and Southern, and mispronoun-
cing words,” he found community with the disabled children who “didn’t care how he talked.
They loved his songs and his stories” (99). On his final day at the home, Milberry helps take the
children down to the beach: “But when Berry started to push the chair down from the porch
to the walk, the child, through excess of joy, suddenly leaned forward laughing, and suddenly
lost his balance. Berry saw that he was going to fall. To try to catch the boy, the young Negro
let the chair go. But quick as a wink, the child had fallen one way onto the lawn, the chair the
other onto the cement walk” (100–101). Although the boy still clung to Berry after his fall and
was ultimately uninjured, Berry is fired and his last week’s wages are deducted for the broken
wheelchair. Disability theorist Akemi Nishida has addressed the economic exploitation and
emotional labor that can underlie a caregiving relationship, and urges us to acknowledge the
bidirectional oppression that can arise. Nishida notes that “affective relationality –the bond –
is part of what keeps care providers returning to exploitative care work and has them filling
the gap between what care industries provide and what care recipients need” (98). We see this
“affective relationality” in “Berry”: Milberry was initially hired to solely work in the kitchen,
but it is the additional emotional and physical labor of spending time with the children that
ultimately leads to his loss of employment.
Black ill transience in Hughes’s “Home”

While the majority of representations of illness and disability in The Ways of White Folks refer-
ence whiteness, the short story “Home” is an anomaly. “Home” is narrated from the perspective
of Roy, a professional violinist who, upon contracting tuberculosis during his travels in Europe,
returns to his native Missouri to die, only to be lynched for speaking with a white woman.
Tuberculosis in “Home” adds increasing tension, dread, and discomfort, building the (eventually
thwarted) expectation that the disease will kill the protagonist. Hughes’s short story is exem-
plary of Du Bois’s insistence that racism, rather than merely illness, disability, or lack of hygiene,
is the most potent threat to black life. While living out his remaining days in Missouri, Roy
gives a church concert and befriends a white elderly woman named Miss Reese who teaches
music at the local high school. One evening, Roy takes a restless stroll through the town’s main
street and encounters her. In a moment of mutual recognition of bodily vulnerability, Hughes
writes, “They smiled at each other, the sick young colored man and the aging music teacher in
the light of the main street” (28).
Roy’s unfamiliarity with southern customs of segregation leads him to shake hands with
Miss Reese, for which he is subsequently lynched by a mob of white bystanders. It is tempting
to see disability as a metaphor for infectious white violence in this piece, especially as the scene
of Roy’s death by lynching evokes symptoms of tuberculosis: “Roy looked up from the side-
walk at the white mob around him. His mouth was full of blood and his eyes burned. He knew
he would never get home to his mother now” (29). However, I am interested in highlighting
how Hughes places a rare emphasis on modern, black, ill subjectivity and provides a black illness
narrative that reclaims the figure of the tubercular dandy genius for blackness.
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Roy arrives back in America in July of 1932, “on the day that Hoover drove the veterans out
of Washington” (22). Upon returning to Hopkinsville from Berlin, Roy’s urbanity unsettles the
color line in southern Missouri. As Hughes tracks Roy’s decision to return home to convalesce,
he addresses the charge that tuberculosis fell upon urban black people as a punishment for their
reckless migration to vice-ridden urban areas. It was a common line of argument that “free”
African Americans were more prone to disability and illness than enslaved people; this rhetoric
sustained itself in future discourses by insinuating that migrating “northern” black people were
more prone to debilitation than southern black people. This reasoning, as public health scholar
Samuel Kelton Roberts notes, conveniently ignored the effects of Jim Crow on black health in
the form of crowded conditions and a lack of access to medical care (5).
After years playing in cities across Europe, Roy no longer “felt his color” and lives on a
comfortable income (23). But this relief from racism is tempered by his disgust with the stark
juxtaposition of poverty and wealth, “behind doors where tourists never passed, hunger and
pain were beyond understanding. And the police were beating people who protested, stole or
begged” (22). Kimberly Banks reads Roy’s homecoming as a death wish, suggesting that “in
coming home maybe Roy sought the violence of the South rather than the impersonal violence
of major cities” (462). Rather than perceiving Europe as the black modernist dream of color-
blind artistic freedom, Roy compares Depression-era Harlem with Berlin, Prague, and Vienna
and concludes the world is “rotten everywhere” (Hughes 22). Yet a return to the rhythms of
rural life, intended to restore health to the urban ill, hastens Roy’s demise.
As a thoroughly modern black violinist, sartorially offensive to Missouri whites in his “suit
and spats and…yellow gloves,” Roy translates what looks like an unfortunate forgetfulness
of segregation into a refusal to be segregated (27). Throughout his illness and transition to
Hopkinsville, Roy maintains his elegant dress, incorporating a cane “that he carried lately from
weakness rather than from style” (27). The image of a displaced black tubercular dandy, inching
through the streets of small-town Missouri, is an altogether different vision from the urban
vitality of Berlin or even Harlem. Roy’s sartorial presentation speaks to a complex classed,
racialized, and gendered history. The black dandy was initially satirized in minstrelsy perform-
ance as “Zip Coon,” a figure that registered white anxieties about post-emancipation black class
and cultural mobility (Lott 138).The dandy was reclaimed and repurposed by figures such as Du
Bois as the sensitive aesthete who had much to offer U.S. artistic exceptionalism, a manifestation
of an American cultural nationalism that argued for black worth in order to appeal for citizen-
ship. Monica Miller argues that the black dandy figure in Du Bois’s 1928 novel Dark Princess is
“aware of, but not limited by blackface stereotype…fully participat[ing] in a modernist moment
in which the performance removes the blackface taint from the art and the ridicule from the
upwardly mobile, politically astute person” (159). In “Home,” Hughes also implements a “mod-
ernist moment” of re-signifying the dandy, removing Roy from the cosmopolitanism where he
developed his distinct style and placing him back in Missouri where he is perceived as arrogant
(Miller 159).
In a Du Boisian strain, contrasting the worldly Roy with the ignorance of the white towns-
people argues for his relevance within what Du Bois famously called “the talented tenth,”
particularly when Roy brings culture back to the town through his performance at the local
church. But Hughes chooses instead to satirize this homecoming narrative and to invest in a
differing politics of illness. As Susan Sontag writes in Illness as Metaphor (1978),
The melancholy character –or the tubercular –was a superior one: sensitive, cre-
ative, a being apart…the TB sufferer was a dropout, a wanderer in endless search of the
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healthy place. Starting in the early nineteenth century, TB became a new reason for
exile, for a life that was mainly traveling. (32–33)
While Sontag emphasizes white and economically mobile experiences of tuberculosis, her piece
usefully elucidates the characterization of white illness that Hughes draws upon and subverts. In
his restless wanderings through Europe to Harlem and finally back to Missouri, Roy claims the
crip transient figure for blackness.
Rather than a metaphorical conflation of whiteness and “ill” conscience in Missouri,
Hughes instead presents a truncated black illness narrative. The story is composed of six brief
sections, four of which resemble chronological exposition, with the third and fifth sections
implementing modernist psychological interiority by fully immersing the reader in Roy’s cha-
otic interior monologue. The fifth section opens with Roy playing a homecoming concert.
Hughes writes the entire section in stream-of-consciousness to convey Roy’s feverishness and
unease. After performing throughout Europe, playing his “first concert in America” in a church,
while ill, to a segregated black and white audience, is entirely surreal to Roy. Hughes joins ill
and modernist poetics here:
And you, Mr. Brahms, singin’ out into the darkness, singin’ so strong and true that a
thousand people look up at me like they do at Roland Hayes singing the Crucifixion.
Jesus, I dreamed like that before I got sick and had to come home… .This, my
friends…I should say, Ladies and Gentlemen. (There are white folks in the audience
who are not my friends.)…This is the Meditation from Thais by Massenet… .This
is the broken heart of a dream come true not true. This is music and me, sitting on
the door-step on the world needing you… .O, body of life and love with black hands
and brown limbs and white breasts and a golden face with lips like a violin bowed for
singing… .Steady, Roy! It’s hot in this crowded church, and you’re sick as hell… .This,
the dream and the dreamer, wandering in the desert from Hopkinsville to Vienna in
love with a streetwalker named Music… (25)
Ill chronicity –an unpredictable state that is composed of recurrences –“alters the pace of time”
for Roy in this passage (Gravendyk 15). This juxtaposition of Roy’s “sick as hell” state with
rapid flashes of disjointed images and sound approaches what Hilary Gravendyk has coined
a “chronic poetics,” in which an attention to “duration, chronicity, pain” takes the place of a
poetics “imagined through a normative body” (2). Duration and chronicity are especially key
to Hughes’s rendering of Roy’s experience; this elliptical passage articulates how throughout
his performance Roy both dips into the delirium of illness and resurfaces, alternately stretching
and hastening the experience of time. The reader does not experience his performance or even
its effect on the audience, but rather the nonlinear strand of thoughts that emerge during the
performance and his relapse into tuberculosis symptoms. In this way, Hughes drives home the
black modernist melancholy of displacement through the manipulation of white-identified
musical form. This is similarly reflected in how the tubercular white dandy is re-homed in Roy.
In a 1934 letter to Hughes, while dying of tuberculosis himself, Wallace Thurman satirizes
the aggrandizement of white ill genius and romanticizations of the illness, quipping, “Yes, at
last I’m a genius. I have T.B.” Echoing Thurman’s ironization in narrative form, Hughes situates
Roy as the tubercular black genius and troubles the color line of artistic brilliance and illness.
By narrating his unexpected death at the hands of white southerners rather than tuberculosis
alone, Hughes reverses the trope of the black dandy’s foolhardy venture into the territory of
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modernity reserved for whites. In treating Roy’s illness as a social reality, rather than solely using
illness as metaphor, Hughes demonstrates that one can be black, ill, and modern.2
Psychiatric reform
To conclude, this chapter will turn to the ways in which Afro-modernism responded to the
climate surrounding psychiatric disability and psychiatric reform before the mid-century. In the
1940s U.S., psychiatric and institutional reform was initially incited by concern for discharged
white male veterans, with less attention afforded to disabled civilians, especially disabled people
of color. In response, conscientious objectors forced to work in asylums exposed the harrowing
conditions of institutionalized people and Mary Jane Ward’s 1946 novel The Snake Pit directed
attention toward white women and their wrongful institutionalization for gendered psychiatric
disabilities.
In a climate of psychiatric reform that neglected people of color, Ralph Ellison and Richard
Wright were generating greater awareness of black mental health with their writings about
Harlem’s newly-opened LaFargue clinic, an intrepid low-cost psychiatric clinic established
in 1946 under the direction of white psychologist Fredric Wertham. That same year, Wright
published “Psychiatry Comes to Harlem,” a short piece in support of the opening of the
Lafargue Clinic. Wright joins his interest in psychiatry with a materialist critique of the uneasy
marriage of health care and capitalism, arguing that “[i]‌t would be far easier to confiscate pri-
vate property than to violate, under however laudable a pretext, the contemporary metaphysical
canons of organized medicine in America” (49).
Two years later, Ellison also wrote in support of the clinic in “Harlem is Nowhere,” a photo-
essay that was ultimately not published until 1964. Influenced by psychoanalysis and the rise
of social psychiatry, both Wright and Ellison articulate a post-Depression black modernism
predicated on the loss of community, religion, and mental health, and delineate their intimate
ties to a broken dream of citizenship recognition that was supposed to be enhanced by black
civic participation in World War II.3
In the place of such citizenship, Ellison paints Harlem as “nowhere.” Ellison describes a
postwar malaise settling in Harlem that cannot be lifted until the African American is no longer
a “ ‘displaced person’ of American democracy” (57). In response to this displacement, Ellison
argues, the black man “has developed these techniques of survival to which Faulkner refers to
as ‘endurance,’ and an ease of movement within explosive situations which makes Hemingway’s
definition of courage, ‘grace under pressure,’ appear mere swagger” (55). Long before critiques
of masculinity in Hemingway’s work emerged in modernist scholarship, Ellison lampoons the
“white man against a changing world” ethos that characterized much of U.S. modernist pro-
duction, showing the need for more than mere “courage” or “endurance” to ensure black sur-
vival. However, the emerging visibility around mental health that was afforded to veterans, white
women, and black men were in some ways predicated upon the gaps and silences surrounding
black women and psychiatric disability. Future scholarship on Afro-modernism and psychiatric
disability would benefit from a sustained consideration of black women’s psychological states in
works by authors such as Marita Bonner, Anne Petry, and Nella Larsen.
Conclusion
Julie Minich argues that “[t]‌here is…an enormous body of scholarly and activist work that has
until recently gone unrecognized by disability scholars as critical disability studies, despite advo-
cating a radical politics of corporeal variation and neurodiversity: [including] protests against
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racialized disparities in health.” If modernism is defined by a sense of loss, disenfranchisement,

and religious, familial, and community alienation, these experiences were ongoing for black
Americans in the twentieth century. Therefore, a definition of modernism that ends with the
optimism of the postwar moment is a modernism that ignores the anomie accelerated by racial
alienation and in part spurred by continued health inequities.This has implications not only for
modernist methodologies but also for the approaches of critical disability studies. Despite the
centrality of protesting health inequities within African American cultural production, we have
not fully registered their artistic value and contributions to Afro-modernist thought. Conversely,
critical disability studies has overlooked the value of health-themed writings by people of color
for the disability studies canon. Looking to works by Afro-modernists such as Hughes, who used
disability as a metaphorical critique of whiteness, reveals the power dynamics of underpaid care-
giving and emotional labor in the Jim Crow era. Highlighting works from Wright, Ellison, and
Hurston that were written from the depths of a racialized health crisis illuminates the continuity
of these issues in recent history, from the Flint water crisis to the persistence of race-based medi-
cine in justifying the neglect of patients of color.
Notes
1 I draw my understanding of Afro-modernism from Baker, Hutchinson, Stewart, Sanders, and Smethurst.
For further reading in black disability studies, see Jarman, Schalk, Bell, Boster, Burch, Carmody, Pickens,
Dudley, and Samuels (2011).
2 For more on Hughes and illness, see his poem “The Consumptive” in the February 1933 issue of The
Crisis (31), as well as his poem “The Sick Room” in the 1939 edition of The Weary  Blues.
3 Gabriel Mendes has written extensively about this topic in his book Under the Strain of Color: Harlem’s
Lafargue Clinic and the Promise of an Antiracist Psychiatry.
Works cited
Baker, Houston A. Modernism and the Harlem Renaissance. Chicago: University of Chicago Press, 1987.
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12
“WHAT’S THE MATTER
WITH HIM?”
Intellectual disability, Jewishness, and stereotype
in Bernard Malamud’s “Idiots First”
Howard Sklar
As in many of Bernard Malamud’s short stories, the characters in his 1961 “Idiots First” suffer
from a double otherness, insofar as they are outsiders both to the Jewish community in which
they live and to American society generally. While Malamud, as a Jewish American writer, fre-
quently relies to a considerable extent on the use of stereotype as a shorthand for the otherness
of the Jewish characters in his stories, this sensibility is compounded in the “idiot” figure of
Isaac, whose intellectual disability estranges him even further from the norms of society. Indeed,
the story reinforces discourses that have traditionally been applied to people with intellectual
disabilities. Martin Halliwell, in his Images of Idiocy: The Idiot Figure in Modern Fiction and Film
(2004), suggests that, for many such characters, there is “an inner lack of coherence,” with the
result that “idiot figures are often ‘open’ characters in process rather than fixed functions.” He
points especially to “modernist and postmodernist writing in which characters are rarely stable
entities: sometimes fragmentary, sometimes incomplete, and sometimes discontinuous” (14).
In this sense, Isaac, like many other intellectually disabled characters, is “transformed into an
uncertainty which fixes the colonial subject as a ‘partial’ presence,” as Homi Bhabha describes
this process, and this “partial” –indeed, stereotypical –quality complicates our spontaneous eth-
ical response to his plight (86). Reading the story in relation to theories from postcolonial,
Jewish, and disability studies, as well as short story theory, I will examine the ethical implications
of the multiple layers of otherness enacted by Malamud’s story. I claim that the story simul-
taneously activates several ethical considerations: (1) the ethics of representing an Other –in
this case, an intellectually disabled Other; (2) an ethical evaluation of the relations between
characters, particularly between Isaac and his father, Mendel; and (3) a rhetorical ethics, as the
narrative persuades readers to adopt a sympathetic stance towards the protagonists (see Sklar, Art
of Sympathy; Phelan, 1–24). These effects are made possible by the genre of the short story itself,
both in terms of its need for compression or “intensification of structure” (May, The Short Story,
116) and its typical reliance on a moment of “epiphany” or “high emotional intensity” (Toolan,
“Engagement via Emotional Heightening,” 213–14) –in this case, not for the characters but
for us as readers. Thus, while the story reflects some of the prevailing assumptions about intel-
lectual disability in society, I argue that, by engaging our ethical and emotional responses to
Isaac’s plight, the narrative partially transcends the “prosthetic” function that many intellectually
disabled characters tend to serve (Mitchell and Snyder, 8).
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“What’s the matter with him?”
A word on “intellectual disability”

The term intellectual disability, like so many others that have been or are used (“mental retard-
ation,” “cognitive impairment,” “developmental disability,” “learning disability,” “learning diffi-
culty”), is problematic in terms of what it implies and what it leaves out. Intellectual disability as
a category stresses particular –that is to say, intellectual –skills, at the expense of other forms of
capability. It also implies the lack or significant impairment of that ability. In this sense, by using
the term, one is oriented towards an individual’s intellectual incapacity, rather than the totality
of the person. This is specifically what terms such as “learning difficulty” are meant to remedy,
as Goodley and Rapley (229), for example, argue. At the same time, as I have elaborated else-
where (Sklar, “Narrative Empowerment,” 145–46; Sklar, “Reading Other Minds,” 236), the lack
of specificity in such terms –however much they may promote greater self-esteem on the part
of those who are labelled –renders them in a descriptive sense almost meaningless. Since the
primary challenge for this group of people is their cognitive difference, therefore, I have opted
to use the terms “intellectual disability,” and “people with intellectual disabilities,” despite their
limitations.
The story
The events of “Idiots First” all take place on one evening, as an elderly father, apparently
on the verge of death, tries to collect enough money to send his 39-year-old intellectually
disabled son by train cross-country to his 81-year-old brother (Malamud, “Idiots First,”
276, 280). The father, Mendel, drags the son, Isaac, from one potential source of financing
to the next. He is refused any charity, first by an indifferent pawnbroker and then a piti-
less wealthy scion of the community, with each asking about Isaac, “What’s the matter with
him?” (274, 276). Finally, the local rabbi, against the strenuous objections of his wife, gives
Mendel a new “fur-lined caftan” coat (278–79) that he can pawn for the funds that he needs.
When Mendel has finally managed to scrape together enough money for the ticket and is
on the verge of finally getting Isaac to the train on time, they are stopped at the gate by a
mysterious character, Ginzburg, about whom Mendel warns his son at the beginning of the
story, “Don’t talk to him or go with him if he asks you” (274). When they meet at the train
station, it becomes apparent that Ginzburg is an emissary of the Angel of Death, as he tells
Mendel, “You shoulda been dead already at midnight. I told you that yesterday. This is the
best I can do” (279). Mendel asks Ginzburg, “Whatever business you in, where is your pity?”
(280). When Ginzburg replies that “The law is the law” (280), Mendel tries one last entreaty,
explaining, “For thirty-nine years, since the day he was born, I wait for him to grow up, but
he don’t. Do you understand what this means in a father’s heart? Why don’t you let him go
to his uncle?” (280). Even this fails to persuade Ginzburg, so Mendel, desperate to get his
son on the train, which still sits ready for departure just beyond the gate, attacks Ginzburg,
and they wrestle violently in a scene reminiscent of the biblical encounter between Jacob
and the Angel/God/a man (Genesis 32:22–32). Although at one point during this fight
Mendel thinks, “Now I die without helping Isaac” (280), in the end Ginzburg realizes that,
instead of Mendel, it is he who will be taken by death, as we are told, “Ginzburg looked
astounded. ‘Who me?’ ” (281). Ginzburg then relents and tells Mendel, “Go…take him to the
train” (281), and the father settles Isaac on the train, even managing to give the conductor
instructions about how to assist his son, before returning to the platform “to see what had
become of Ginzburg” (281).
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Howard Sklar
Degrees of otherness
As this synopsis suggests, the narrative is constructed in such a way as to readily induce our sym-
pathy for the protagonist Mendel. His motive, to provide for his disabled son before he dies; his
unselfish requests for assistance; the helpless tale of his difficulty in raising a son who has never
“grown up”; the pitiless resistance to his pleas; the mounting desperation; even his concern for
Ginzburg after he has accomplished his mission –all of these direct readers to very quickly take
Mendel’s side. The fact that Mendel’s devotion to his son is foregrounded in this compressed
way, typical of the short story genre (May, “The Short Story’s Way of Meaning,” 176), provides
a fairly decisive parameter, or “frame” (Winther) within which readers are guided to respond to
the narrative (see more below).
Even the title of the story –like other Malamud story titles, highly significant to the story’s
meaning (see Winther, 93–96) –suggests a particular ethical stance towards the protagonist and
his so-called “idiot” son: Mendel demonstrates that his son comes “first” through his desperate
attempt to provide for him, even in the face of death. This sensibility is heightened during the
tense and dramatic resolution of the story. That Mendel ultimately wrestles with and defeats
Death, at least temporarily, and is able to help Isaac board the train on time, provides a moment
of “epiphany” –“a point of revelation, of showing forth, the place where everything is seen to
fall together,” as short story theorist Mary Rohrberger puts it (12). This “distinguishing charac-
teristic of the short story” (12) provides a form of release, not only for the characters themselves,
but also, theoretically, for many readers.
In order to distinguish between the represented experiences of characters and the theor-
etical responses of actual readers, short story theorist Michael Toolan distinguishes between
epiphanies or “turning points” (Toolan, in Winther et al., “Dialogues,” 248), which “relate to the
character’s assumed experience” (248, italics added), and “highly emotive and immersing” (HEI)
passages (Toolan, “Engagement,” 212), which “negotiate…a point of greatest emotional and
moral depth in the story for the reader” (Toolan, in Winther et al., “Dialogues,” 248, italics ori-
ginal). While any attempt to make broad claims about the responses of readers to a given story
is naturally speculative, Toolan’s approach to the short story –and my own, in reader response
testing that I have conducted –emphasizes the specific features within a narrative that hypo-
thetically persuade readers to respond in particular ways (Sklar, Art of Sympathy, 89–171; Sklar,
“Narrative Structuring”). As noted above, this story provides a considerable amount of informa-
tion about the relationship between Isaac and his father, along with the difficulty of their plight,
early in the progression of the narrative. This concentration of detail at the beginning of the
story creates what narrative theorist Meir Sternberg terms a strong “primacy effect” (Sternberg,
93–98; see also Sklar, Art of Sympathy, 56–59) –a first impression so decisive that it is difficult to
overturn, even by presenting subsequently negative or contrasting details (the “recency effect”;
Sternberg, 93–98; see also Sklar, Art of Sympathy, 56–59).
Beyond these structural features, the narrative provides additional contextual clues to its
interpretation. For example, Mendel’s vulnerability until his eventual stay against death can
be seen as fitting into the larger scheme of Malamud’s hapless protagonists in his early story
collections The Magic Barrel (1970 [1958]) and Idiots First (1966 [1963]), nearly all of which dem-
onstrate an almost life-threatening social impotence or incompetence. As Robert Alter asserts,
“Malamud’s symbolic Jews must be shlemiels, for…Malamud’s central metaphor for Jewishness is
imprisonment, and even when no actual enclosing walls are present, his Jews remain manacled
and hobbled to their own scapegrace ineptitude” (33). The shlemiel –“a consistently unlucky or
unfortunate person…a born loser” (Rosten, 344) –certainly seems a plausible way of labeling
the ineffective quality of the characters’ struggles against life and fate. That the term also often
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means “a foolish person; a simpleton” (344) makes the shlemiel designation particularly ironic,
in light of the presence of Isaac. If nearly everyone is viewed, on some level, as a “simpleton,”
one might wonder if Isaac’s overt designation as an “idiot figure” is less significant to the overall
design of the narrative than it initially appears.
As shlemiels, Malamud’s protagonists suffer from a double otherness, insofar as they are
outsiders both to the community in which they live and to American society generally (see
Gilman, Jewish Self-Hatred, 2–6). We find a similar dynamic in Michelle Fine and Adrienne
Asch’s suggestion that women with disabilities suffer from a “double oppression” (cited in Hall,
41). In “Idiots First,” this double otherness is reinforced by the juxtaposition of Mendel with the
people that he encounters in the course of the narrative. At each stop, Malamud portrays varying
degrees of separation between Mendel and the center of economic and cultural power in the
community, yet each of these individuals is still one step (or more) removed from the Gentile
norm. At the first stop, the local pawnshop, Mendel tries to sell his old watch. Despite the simple
appearance of the shop, the pawnbroker exerts his power over Mendel by first making him wait
for service and then by offering less than the amount that Mendel needs.
The second stop, by contrast, Mendel describes as a “regular palace” (275). The home,
attended by a servant, belongs to a Mr. Fishbein, “a paunchy bald-headed man with hairy
nostrils and small patent leather feet” with “a large napkin tucked under a tuxedo button” (275).
The contrast between Fishbein’s tuxedoed dress and his “hairy nostrils” and dangling napkin
suggests a mixture of refinement and crudeness, of privilege and common origins, indicating his
status as what Hannah Arendt called “parvenu Jews” (see Cheyette, 12), in that he has achieved
a degree of social status, but remains, in Brian Cheyette’s words, “cut off from true political
power” (12). This is reinforced by his first words to the visitors: “Who comes on Friday night
to a man that he has guests, to spoil him his supper?” (275) Malamud frequently uses such syn-
tactical oddities –“a man that he has guests,” “to spoil him his supper” –to suggest a Yiddish
inflection in the speech of his characters (see Wirth-Nesher, 220). More than a stylistic gesture,
this feature of the characters’ language suggests that the community in which they reside –never
wholly defined –exists as a social and cultural entity unto itself (Alter, 30).
Yet, as the example of “Idiots First” readily suggests, the presence of community does little
to mitigate the pervasive sense of disconnection that the characters in his stories experience.
Nevertheless, while the threads that make for relationship in a community are often tenuous,
Malamud’s stories often work, as suggested earlier, towards moments of “epiphany” in which
communication and communion are temporarily, tentatively established. These moments are
thus significant, in Malamud’s conception, as glimpses of the transformational power of genuine
community, in contrast with the isolation and disconnection typical of life in this quasi-shtetl,
with its traces of the “Jewish communities of Eastern Europe” (Rosten, 369).
Despite these glimpses, the fact remains that all of these characters belong to a community
that is implicitly separate from and, in terms of cultural norms, is viewed as inferior to, the larger
American community of which it is a part. Thus, Mendel’s position of inferiority to those who
themselves are subject to the larger community around them signals the degree to which the
protagonist is doubly other. Sander Gilman explains the process by which the dominant portion
of an outsider group sometimes will project the stereotypes that have been directed at the group
as a whole onto a “subgroup” among the outsiders. In this way, writes Gilman, “[T]‌he quality
ascribed to them as the Other…is then transferred to the new Other found within the group that
those in power have designated as Other” (Jewish Self-Hatred, 3–4). Thus, by adopting the values
of the reference group, and by applying the stereotypes that have been used against them, the
primary group attempts to “escape the cloak of Otherness” (3) by projecting those stereotypes
on a secondary group within their community. The danger in this lies in the fact that, “even as
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Howard Sklar
one distances oneself from this aspect of oneself, there is always the voice of the power group
saying, Under the skin you are really like them anyhow” (3).
In this sense, as Alter suggests, Malamud’s characters remain “imprisoned,” either by society or by
their “scapegrace ineptitude”; yet this condition seems merely to form the backdrop to an implicit,
yet possibly significant, sensibility. While it is often the very helplessness of Malamud’s characters
that renders them sympathetic, for Malamud mere haplessness does not suffice as a motivation for
sympathetic attention. Rather, it is the effort to overcome that incapacity –even, or perhaps espe-
cially, when that effort is unsuccessful –that properly refocuses our attention and sympathies from
what the characters presumably lack to their struggling humanity.
The representation of intellectual disability: a “failed mimesis”?

Despite the sympathy for father and son that is prompted by their very human struggles, the
author’s treatment of the “idiot” son points to a more problematic aspect of the story that finds
expression not just in its language but also in the development of Isaac as a character: we see
that Isaac –son of a doubly other father –is himself triply other in that his disability places him
at an even greater remove from the already alienated “privileged group” within the community.
Indeed, if Mendel as a quasi-colonial subject has been “transformed into an uncertainty which
fixes…[him] as a ‘partial’ presence,” to use Bhabha’s terminology, Isaac is even more “partial,”
even less present. On one level, Malamud foregrounds this alienation by having other characters
repeatedly ask Mendel, as noted earlier, “What’s the matter with him?” Yet, while all of the
characters display exaggerated features, the qualities that render Isaac stereotypical are clearly
different in kind, in that the traits that make him a “type,” rather than drawing from a well of
Jewish tropes like the other characters, are those that are typically used to suggest intellectual dis-
ability. A few examples from the larger cast of characters will demonstrate this difference.
Among the characters in the story, Mendel is the only one who might be viewed as serving
the function of “protagonist,” as W. J. Harvey, an earlier theorist of characterization, defines
it: “those characters whose motivation and history are most fully established, who conflict
and change as the story progresses, who engage our responses more fully and steadily, in a way
more complex though not necessarily more vivid than other characters” (56). In this sense, we
know of Mendel’s urgency to get Isaac to the train station before he dies; we sense his love for
Isaac. Readers are also presented with a backstory about the difficulties he has faced in raising a
person with intellectual disabilities, as cited earlier: “For God’s sake, don’t you understand what
I went through in my life with this poor boy? Look at him. For thirty-nine years, since the day
he was born, I wait for him to grow up, but he don’t. Do you understand what this means in
a father’s heart?” (“Idiots First,” 280). In this way, we are given an intimation of the character’s
complex inner life, even though the short story form doesn’t allow for more than the suggestion
of his experience.
By contrast, the other characters are rendered through short, evocative descriptive phrases
that deftly suggest their nature, and which in turn enable Malamud to quickly immerse readers
in medias res in the central conflicts of his stories.This is a characteristic feature of the short story
form, as short story theorist Charles E. May, citing Bliss Perry, points out: “He notes that the
shortness of the form requires that characters must be ‘unique, original enough to catch the
eye at once’ ” (May, The Short Story, 117). This point is reinforced by Sister Mary Joselyn, also
cited by May (118), when she claims that the short story relies on “a high degree of suggestive-
ness, emotional intensity, achieved with a minimum of means.” Thus, our introduction to the
pawnbroker, who consciously ignores the father and son when they enter his store, immediately
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conveys his indifference to their plight: “The pawnbroker, a red-bearded man with black horn-
rimmed glasses, was eating a whitefish at the rear of the store. He craned his head, saw them,
and settled back to sip his tea” (274). Similarly, Mr. Fishbein, with his combination of refined
dress and crude manners (“hairy nostrils,” “a large napkin tucked under a tuxedo coat button”)
is understood to represent someone who doesn’t know how to “wear” his recently-acquired
wealth: “Mr. Fishbein, a paunchy bald-headed man with hairy nostrils and small patent leather
feet, ran lightly down the stairs, a large napkin tucked under a tuxedo coat button” (275). The
third person to whom Mendel and Isaac turn for aid, the local rabbi, is rendered sympathetically,
yet pathetically, suggesting both the compassion and the weakness that ultimately lead him to
give up his expensive coat to the two supplicants: “The rabbi was an old skinny man with bent
shoulders and a wisp of white beard. He wore a flannel nightgown and black skullcap; his feet
were bare” (278). Such characters are certainly types, even stereotypes, representing particular
features that are familiar to readers and that enable them to grasp the scene quickly. These are
the types of characters that Harvey termed “the Card,” or “the character who is a ‘character’ ”
(58). Indeed, despite the evocative quality of their introductions, none of these three characters is
“whole” or “dynamic” in the sense that Baruch Hochman considers among the essential elem-
ents in what constitutes a more fully developed character (103–16; 132–38; see also Halliwell,
14; Sklar, “Reading Other Minds,” 242). Rather, they are at the less-defined end of what Uri
Margolin suggests occurs in our conceptualization of all fictional characters: “Characters are
thus partially indeterminate (schematic, not fully individuated), and are technically person-kinds
who can be filled in (specified, concretized) in various ways and to different degrees” (Margolin,
68). In this sense, characters that are deliberately, strategically “indeterminate” –that is to say,
incomplete –are completed in a process of “readerly imaginative re-creation” (Margolin, 69;
see also Sklar, Art of Sympathy, 1–22). While this “indeterminacy,” and the need to imaginatively
“fill in” the details of the character, is necessitated by the brevity of the short story itself, for the
purposes of Malamud’s story it is important to identify what he does tell us, as well as what is
left unspecified. Each of these characters possesses trace elements of identifiable –albeit stereo-
typical –Jewish features: the pawnbroker, eating whitefish; Fishbein, his Yiddish inflection; the
rabbi, of course, his profession. Some of these shorthand features, particularly the speech pattern,
are present even in the more developed Mendel. What we find, in any case, is a broad range of
Jewish “types” that, together, form a sort of communal whole.This whole, in turn, overrides the
dominance of the stereotype of any one individual.
It is significant, therefore, that Isaac lacks features that might be interpreted as “Jewish,” des-
pite the startling number of disclosures –at least 40, nearly half in the first third of the story –
that are provided relating to his character. On the first page of the story, we find references to
“his astonished mouth open” and his “small eyes and ears” (273), and there are descriptions
throughout the story of Isaac’s animalistic “mewling” (276, 280), “yowling” (277), and “yelping”
(280). All of these features –the physical vacuity and abnormality, the association with animals –
are common tropes in the representation of intellectual disability (see Halliwell, 144; Sklar,
“Reading Other Minds,” 241). Add to these the almost parodic incapacity of Isaac’s attempt to
count to ten –“One…two…nine” (273); his single-word sentences like “Schlaf ” (sleep, 273),
“Hungrig” (hungry, 276), and “Eggs” (275); and his obsessive concentration on primal needs
and maintaining particular routines, and Isaac seems unusually simply rendered, particularly
since he is present throughout the story.
Several years ago (Sklar, “Reading Other Minds,” 241–42), I argued that most intellectually
disabled characters in fiction are “archetypal” in the sense suggested by Northop Frye in his
classic Anatomy of Criticism: Four Essays (1973 [1957]):
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Howard Sklar
Archetypes are associative clusters, and differ from signs in being complex variables.
Within the complex is often a large number of specific learned associations which are com-
municable because a large number of people in a given culture happen to be familiar with
them… .The stream of literature, however, like any other stream, seeks the easiest
channels first: the poet who uses the expected associations will communicate more rapidly.
(102–3, italics added)
These “associations” – features that are “familiar” and “communicated rapidly” to “a large
number of people” – are a common shortcut in literature, as I have argued in connection
with the pawnbroker and Fishbein. In that earlier essay I outlined a series of intellectually
disabled types that I have seen repeated in numerous literary works: The Animal, The Wise
Fool, The Uncontrollable Monster, The Big Oaf, The Cipher, The Blank Slate, The Slovenly
Dullard, and The Genial Simpleton (“Reading Other Minds,” 241–43). However, rather than
viewing these as separate archetypes, as I did in that article, I now see each of these types as
constituting possible expressions of one general archetype of intellectual disability. In addition,
I have added to that cluster of associations The Overgrown Child and The Clown, as can be
seen in Figure 12.1.
Very few intellectually disabled characters in fiction, of course, possess all of these features.
For example, Lennie Small in John Steinbeck’s Of Mice and Men (1937), with his enormous
size, general kindness, gullibility, and sudden proneness to violence, can be said to possess
elements of The Big Oaf, The Uncontrollable Monster, The Overgrown Child, The Kind
Simpleton, and The Blank Slate. By contrast, the cinematic version of Forrest Gump, who
Animal
Wise fool Monster
Intellectually Blank slate/

Kind disabled
simpleton cipher
character
Slovenly Clown
dullard
Overgrown
child
Figure 12.1 Archetype of intellectual disability.
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149
spouts wise aphorisms without always understanding the implications of his words, and repeat-
edly finds himself in outlandish situations, displays elements of The Clown, The Wise Fool,
The Overgrown Child, The Genial Simpleton, and The Blank Slate. These are certainly not
absolute categories, but they do point to a tendency among fiction writers to portray intel-
lectual disability in specific, narrowly-defined ways. This is less a question of the types of
representations that have been identified by what David T. Mitchell and Sharon L. Snyder
call the “negative-image school” (19) than of the equally problematic realization that “[t]‌he
generic classification of disabled types produces an ahistorical interpretation that tends to see
disability representations as slanderously consistent across cultures and periods” (25). In other
words, in the case of intellectually disabled characters, they exist outside of history, and there-
fore outside of human society.
The character of Isaac in “Idiots First” is no exception to this tendency. Mendel’s references
to him as a “boy” and as having never grown out of childhood make his identification as an
Overgrown Child clear. Although we don’t come to know him as deeply and intimately as we
do Lennie Small or Forrest Gump, his kindness is evident in his readiness to help his father,
which conveys a sense of the Kind Simpleton. Mostly, though, Isaac registers as somewhat of an
empty vessel –less a Blank Slate, on which other’s ideas can be written, than a Cipher, a non-
entity. As noted earlier, he primarily moans (Malamud, “Idiots First,” 274), “sucks air” (274), or
“mewls” (276) in response to the running monologue provided by his father, and to the events
that transpire in the story. Even his one-word sentences (“Schlaf ”/sleep, 273; “Hungrig”/
hungry, 276; and “Eggs,” 275) merely convey his primal, largely instinctual needs. In this sense,
it is difficult to justify the extremity of Isaac’s characterization, from which most traces of sen-
tient humanity have been removed –the type of representation that Paul Marchbanks terms a
“failed mimesis, as [a]‌representation […] of an actual, disabled population in uneasy dialogue
with society” (5). In response to this type of failure, Michael Bérubé proposes “an ethics of
narrative,” for which “the animating question will be what the character with an intellectual
disability knows –or can know –about the narrative she or he inhabits” (38). To what extent
does Isaac “know the narrative he inhabits” –understand his role within the world that is
depicted in the story?
There are certainly moments when Isaac transcends the simplicity of his characterization.
For example, as Isaac and his father approach Fishbein’s home –a “regular palace,” according
to Mendel –we are told that “Isaac stared uneasily at the heavy door of the house” (Malamud,
“Idiots First,” 275, italics added). While the specific reason for Isaac’s “unease” is not specified,
we nevertheless sense the presence of more complex feelings beneath the simplistic exterior.
Similarly, when Isaac lifts Mendel after his father has collapsed near the end of the story, his
inclination to help suggests a greater level of awareness than he otherwise displays. Malamud
subtly motivates Isaac’s response by establishing, at other points in the story, the depth of the
relationship between father and son: by showing Mendel dressing Isaac at the beginning of
the story (273); or by describing the way that Mendel seats Isaac on the train and instructs the
conductor, “Be nice to him… .Show him where everything is” (281). Ultimately, though, we
are left with one indelible, final image of Isaac, who, as he awaits the departure of the train, “sat
at the edge of his seat, his face strained in the direction of his journey” (281). We can’t help but
wonder, in that last moment, what Isaac is thinking and feeling about the journey that awaits
him. Does he understand the purpose of the trip? Is he anxious about traveling to an unfamiliar
place? Is he worried about his father? The story provides very little information that might help
us in answering these questions, despite his centrality in the narrative. At the same time, our nat-
ural curiosity about what will become of this childlike, dependent man heightens our sense of
the ethical dimensions of the relationship between father and son –of the weighty commitment
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Howard Sklar
that Mendel has pursued even up to the brink of death. Our sympathies thus extend to both
father and son in that moment, as Malamud foregrounds the representation of genuine relation-
ship between them.
In these moments, Isaac, due to his prominence in the story, almost rises to the level of
a protagonist, in that the narrative guides readers to care what happens to him.Yet, the pre-
ponderance of stereotypical imagery leads one to suspect that Isaac –certainly more than
Mendel, and likely more than the other characters in the story –largely serves as what
Harvey (drawing on Henry James) calls a “ficelle,” “on…[which] can be loaded the weight
of the typical and the representative; through him the world in which the protagonist gains
his individual contours can be given the necessary mass and density” (68). From a dis-
ability studies perspective, of course, this appropriation of disability for narrative purposes
would more properly be termed a form of “narrative prosthesis,” in that the character
seems mainly to exist in order to move the story forward –or, as Mitchell and Snyder put
it, “simply a crutch upon which literary narratives lean for their representational power,
disruptive potential, and analytical insight” (49). If this is true, it is hardly surprising that
most of our sympathy, as noted earlier, is directed towards Mendel, and that Isaac pri-
marily remains in the background. Isaac, in fact, is largely the object of our pity, in that
his disability, as philosopher Licia Carlson puts it, is viewed as “objectively bad, and thus
something to be pitied, a personal tragedy for both the individual and her family, some-
thing to be prevented and, if possible, cured” (Carlson, 5). To a certain extent, Malamud
appears to resist this sensibility. When Mendel pleads, “where is your pity?” in response to
Ginzburg’s uncaring reaction to Mendel’s efforts to get Isaac to the train (280), he appeals
to Ginzburg’s sense of fairness and sympathy: “ ‘All my life,’ Mendel cried, his body trem-
bling, ‘what did I have? […] I didn’t ask anybody nothing. Now I ask a small favor. Be so
kind, Mr. Ginzburg” (280). Thus, while Malamud, both here and in his story “Take Pity”
(Magic Barrel, 85–95), uses the word “pity” as something akin to sympathy, as an expression
of feeling for the underserved suffering of another (see Sklar, Art of Sympathy, 26–36, for
a comprehensive definition), the narrative as a whole tends to reinforce the sense of pity
in its simpler, less committal, rudimentary form of feeling sorry for someone else; in other
words, the type of pity of which people with disabilities often find themselves the object
(see Sklar, “What the Hell,” 137–43). Joseph P. Shapiro claims that this form of pity, to
the extent that it relies on conventional images for the representation of disabled individ-
uals, is founded upon stereotype, which in turn locks that population into limiting and
demeaning perceptions (19–24).
Recognizing the complications inherent in these features and the ways that they are used in
service of advancing the “aesthetic” aims of the narrative, one might conclude that people with
intellectual disabilities, like other historically subject and oppressed peoples, have also suffered
from a form of “colonization” that either demeans, demonizes, or essentializes them as individ-
uals. This is not to suggest that we ought to regard such representations as “right” or “wrong,”
but that we recognize how they may fit into a larger pattern of dehumanization. As Bhabha
observes, “My reading of colonial discourse suggests that the point of intervention should shift
from the ready recognition of images as positive or negative [cf. Mitchell and Snyder, 40–42], to
an understanding of the processes of subjectification made possible (and plausible) through stereo-
typical discourse” (67, italics original). Bhabha thus is determined to move beyond identifying
the simple “wrongness” of particular representations to consider the larger patterns of por-
trayal that contribute to “processes of subjectification” –that, in this case, indeed abet readers’
misperceptions regarding people with intellectual disabilities.
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Jewishness and the myth of “superior intelligence”

The primary way in which Isaac is made into a subject is through a number of discernable features,
as noted earlier: his speech (“eggs”), or especially his relative inability to speak; his non-responsive,
fixated, or “moaning” behavior; and his utter dependence on others. This is expressed most clearly
through the prevailing response towards Isaac –“What’s the matter with him?” –which suggests
that others in the community view him as alien. Such responses to disability generally, or intellectual
disability specifically, are hardly unique to the Jewish community; yet, it would perhaps be useful,
in examining the specific nature of this version of the archetype described above, to consider one
important feature of Jewish identity that complicates the response to intellectual disability particu-
larly: the stereotypical reputation of Jews as having “superior intelligence.”
Sander Gilman, in his Smart Jews: The Construction of the Image of Jewish Superior Intelligence (1996),
examines the pervasiveness of this image over the last two centuries. Gilman’s study was motivated,
in part, by his indignation at the premises advanced by Richard J. Herrnstein and Charles Murray’s
infamous study of “race” and intelligence, The Bell Curve: Intelligence and Class Structure in American
Life (1994). Most of the revulsion towards that study, at the time of its publication, was directed at
the authors’ conclusions regarding groups, particularly African Americans, whose intelligence was
presumed by the study to be lower, and the ways that this type of study played into earlier, more
overtly racist attempts to claim the racial inferiority of peoples of color (Gilman, Smart Jews, 3–5).
Of more direct relevance here, though, is the conclusion reached by the authors, Herrnstein and
Murray, regarding what they refer to as “Ashkenasic Jews of European origins” (cited in Gilman,
Smart Jews, 6). As Gilman points out, “The myth of Jewish superior intelligence has its origin in the
age of biological racism. It is part of the discussion of Jews as a racial category.This myth is quickly
absorbed in the discourse of racial science and continues to hold power even today” (6).Yet, as is the
case with many social perceptions of groups whose status remains Other in the eyes of the dom-
inant majority, Jews themselves have also internalized this conception, as witnessed, for example,
in much of the literary and cinematic production by and about Jews in 20th-century America
(175–206). In other words, according to Gilman, “The image of the superior intelligence ascribed
to the Jews is projected onto them by the cultures in which they live and internalized by them as if
they are part of their own reality, as indeed, these qualities soon become” (206). Or, as Gilman puts
it in a later work on the same topic: “By this argument, if you are not a smart Jew, then you are
not much of a Jew at all” (Gilman, “Are Jews Smarter,” 46). Add to this the long-standing priority
within Jewish culture given to intellectual and educational pursuits (see, for example, Short), and it
is little wonder that the presence of someone like Isaac, who doesn’t fit that self-expectation, would
constitute a problem. From this perspective, the question that I have cited several times –“What’s
the matter with him?” –might be understood to mean something less uncomprehending and more
judgmental, “Why is he here?” or even “What is he?” Articulated in this way, intellectual disability is
viewed as a form of existential threat, particularly if we understand the degree, as noted above, that
intellectual capability has come to be seen as a defining feature of this population.This is reminiscent
of Bérubé’s observation, regarding the Murry family in Madeleine L’Engle’s A Wrinkle in Time, that
“the stigma associated with intellectual disability structures the Murry household, precisely because
the Murry household is so defined by and invested in intelligence” (40, italics original).
It is perhaps for this reason that the representation of Isaac’s difference from others extends
beyond personal, generally human characteristics. As suggested earlier, an important difference
between the supporting characters in the story and Isaac is the reliance, in the minor characters,
on specifically Jewish tropes, whereas Isaac is defined almost exclusively by his intellectual
disability. With the very limited exception of his use of two Yiddish words, “Schlaf ” (sleep,
273) and “Hungrig” (hungry, 276), Isaac appears to lack any of the stereotypical or generalized
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Howard Sklar
markings of Jewishness that provide a cohesive sense of identity in the community, despite the
divisions that exist between individuals. In this way, he lies uncomfortably outside the bound-
aries of Jewish communal life.
Yet, this argument only takes us so far, because Malamud’s Jews –though they may be clever
or conniving or thoughtful –are decidedly not superior in their intelligence. It is no coinci-
dence that, as noted earlier, another widely accepted definition for shlemiel is “a foolish person;
a simpleton” (Rosten, 344). In this sense, there is a subtle affinity between the majority of
characters who populate “Idiots First” and Isaac: they all somehow struggle to understand what
to do. When, for example, Fishbein calls Isaac “this halfwit,” Mendel responds by “flailing both
arms” and cries, “Please, without names” (276). His excited “flailing” suggests an incapacity of
sorts, and he is driven to wild gestures to prevent Fishbein from repeating the epithet. In this
sense, Malamud subtly draws all of his hapless characters into a community-of-sorts.
Community and solidarity

Indeed, despite the stereotypical features of Isaac’s characterization, and despite some of the
subtle and overt ways in which Isaac is excluded from the society around him, the story iron-
ically widens the circle of community to include people like Isaac. While Mendel may lament
the burden of having to care for his son, while he may even continue to regard him as a child,
he clearly loves and feels responsible for him. More significantly, Mendel’s utter devotion to his
son, even up to the moment of his death, suggests a level of acceptance of Isaac that transcends
stereotype, in that, unlike the other characters in the story, Mendel regards him as a person.
Moreover, Isaac’s extreme otherness is mitigated by his surprising understanding –given his
relative incomprehension otherwise –of the need to help his father when he is weak or feeling
defeated, as in the final scene at the train station: “The crowd parted. Isaac helped his father
up and they tottered down the steps to the platform where the train waited, lit and ready to
go” (281). In an important sense, the dynamic of dependency has shifted, as Isaac implicitly
recognizes his aging father’s need for assistance. These seeming contradictions have perhaps less
to do with Malamud’s acceptance of disability, per se, and more to do with a particular con-
ception of community that allows him to embrace all of the befuddled characters in his world,
whatever their particular predicament or difficulty.
It is this contrast between genuine community and isolation that has led me to adopt the term
shtetl, as Hana Wirth-Nesher has done for other Jewish American authors (219), in describing
the community in Malamud’s stories. As Leo Rosten notes, a shtetl was a “[l]‌ittle city, small town,
village –in particular, the Jewish communities of eastern Europe, where the culture of the
Ashkenazim flourished (before World War II)” (369). The “Ashkenazim,” Rosten adds, is “[t]he
name applied, since the sixteenth century, to the Jews of central and eastern Europe –ancestors
of the vast majority of Jews in the United States” (19). Malamud’s characters, by carrying over
to their new community the language and trades that characterized their lives in the shtetls,
ironically create for themselves the semblance of communities that no longer exist. In addition,
they perpetuate the shtetl’s traditional role of protection from outside hostility, a threat that is
suggested occasionally at the margins of Malamud’s stories. The illusory nature of this “meta-
phorically” constructed community –what Alter calls evocatively “the shadow of a vestige of a
specter” (30) –nevertheless possesses the suggestion of a yearning for genuine community that
can be found in Malamud’s short fiction.
Malamud himself confirmed in an interview that his aim in his writing was more than just
the portrayal of human misery; that his idea of art is “close to Frost’s definition of a poem as ‘a
momentary stay against confusion.’ Morality begins with an awareness of the sanctity of one’s
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153
life, hence the lives of others… .” (Plimpton, 159).The “confusion” of which Malamud speaks is
precisely the monotony of “imprisonment” –the unchanging, purposeless, hopeless quality of
the characters’ lives –that Alter describes. Malamud’s attempt to “stay” that confusion, to lift his
characters, even momentarily, above the desperation that characterizes their lives, suggests the
seed of action. Indeed, I am prompted by Malamud’s declared ethical sensibility to wonder, with
J. Hillis Miller, “What should I as a reader do ‘on the basis’ of the knowledge I gain by reading
[a] novel?” (91) More precisely, in what ways will “the reader in reading [a] book and as a result
of this piece of conduct of life…[go] on to do other things that, in their turn, cause yet other
things to be done” (91)?
One significant emphasis in the American Jewish community, in recent years, has been the
promotion of greater awareness of, and activism on behalf of, people with disabilities. In part, this
has been a recognition of how attitudes and even policies have led to exclusion (Ne’eman, pars.
3, 4, 6). In other cases, it has involved an increased sense of solidarity with people with disabil-
ities, for example, through the inception of a Jewish Disability Awareness Month (Waterstone,
par. 1). Most significant, perhaps, is the attempt to contextualize a history of exclusionist ten-
dencies. As Shelly Christensen points out, in the first half of the 20th century –precisely the
period represented in Malamud’s fiction:
In many Jewish communities, disability was considered a shonde, or a shame upon

the family. Once when I was giving a presentation on the Minneapolis Jewish
Community Inclusion Program for People with Disabilities at a synagogue, an older
man approached me with tears in his eyes. He told me about his son, now grown,
who was not welcome to attend religious school, have a bar mitzvah ceremony, or be
involved in any way in Jewish activities. His sense of shame and embarrassment came
not from his own expectations for his son, but from the Jewish community, which
refused to allow his child in its institutions.
(Christensen, par. 14)
Christensen notes, however, that such attitudes are changing, and people with disabilities are
finding acceptance and inclusion in many activities and areas of the community.
Given this history and the struggle to overcome it, the last words spoken by Fishbein –the
primary villain, if we exclude Ginzburg, the emissary of the Angel of Death –are signifi-
cant: “Take him to an institution” (276). The fact that the story’s protagonist, Mendel, adam-
antly, desperately refuses to do so is an important signal to readers of the story’s ethos, despite
the limitations of Malamud’s representation. In an important sense, then, the contradictions that
exist in Malamud’s world –between acceptance and exclusion, community and isolation –are
the divides that all marginalized communities face today. The implicit message in “Idiots First,”
indeed, is one of solidarity, but this does not come without negotiation and struggle. In this
regard, the story provides a fertile platform on which to engage in the intersectional engage-
ment that has begun to enable peoples of diverse backgrounds and needs to resist the structures
in society that deny them their humanity.1
Note
1 I would like to thank Prof. James Phelan (Ohio State University) for his thoughtful comments in response
to an early conference version of this essay. I also greatly appreciate the insightful observations on dis-
ability and Jewish intelligence provided by Prof. Sander Gilman, (Emory University), who kindly read a
near-final draft of the essay. Finally, I would like to extend my gratitude to Dr Alice Hall (University of
York) for her interest in my work, as well as her detailed notes and suggestions for the present essay.
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13
METAPHORICAL MEDICINE
Disability in Anglophone Indian fiction
Stephanie Yorke
Moraes, the narrator of Salman Rushdie’s 1995 novel The Moor’s Last Sigh, says of his fused
hand that “civilization is the sleight of hand that conceals our natures from ourselves. My
hand, gentle reader, lacked sleight; but it knew what manner of thing it was” (365). The sleight
of hand performed by civilization takes many forms in Moraes’s poly-cultural city, and the
plural interpretations which overwrite the concrete fact of Moraes’s body provide what David
Mitchell and Sharon Snyder describe as “an important barometer by which to assess shifting
values and norms imposed upon the body” (51). Moraes’s body is repeatedly subjected to vio-
lent medical intervention, and the violence of medicine takes on symbolic weight. As in many
Anglophone works of fiction, clinical medicine becomes a metonym or corollary for imposed
power structures, including patriarchy, colonialism, and neocolonialism.
Complexities of place and identity complicate reading disability. Helen Meekosha contends
that scholars must “be conscious about the lack of geopolitical specificity in disability studies”
(678), and Clare Barker and Stuart Murray have criticized “over-rigid models and vocabu-
laries” which fail to perform “situated analysis” (220). However, situated analysis is not a simple
matter of excluding Euro-American responses to the body, especially given the marked cath-
olicity of Anglophone Indian fiction: Priyamvada Gopal describes it as “heterogeneous and
capacious” (3); Meenaskshi Mukherjee as “discontinuous” (175); and Ulka Anjaria suggests
that no genealogy accounts for its divergent manifestations. The most misleading genealogies
might be those which attempt to isolate Anglophone Indian fiction from international and
intralingual influences: British-Indian novelist Rudyard Kipling, or Urdu/Hindi fiction writer
Premchand, who in his turn claimed “Dickens,Tolstoy, Chekov and Marx” amongst his literary
forebears, both offer disability representations which are situated in a heterogeneous imaginary
which may be read as cognate with other Anglophone Indian fiction (Premchand iii). As
Ato Quayson suggests in his Aesthetic Nervousness: Disability and the Dependencies of Discourse
(2007), due to “the West’s continuing contact with the rest of the world through the colonial
adventure and the attendant flows of people across borders” (12), understandings of disability
compete and mingle, and “ ‘new’ and ‘old’ ideas are sometimes reconstituted to produce new
perspectives and realities” (13).
This discursive recombination and reconstitution has been driven in part by the dissemin-
ation of medical paradigms and practices. Scientific medicine bears the stigma of what is often
perceived as its European colonial origin, and, relatedly, concern over “changing tradition to
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Metaphorical medicine
accommodate modern/Western medicine,” is, as Patrick Colm Hogan has noted, “a common
motif in postcolonization literature” (266). In The Discovery of India (1946), Jawaharlal Nehru
lays claim to modern medicine in the context of a postcolonial India by contesting its
supposed “western” provenance, describing the ancient “Indian science of medicine” with its
textbooks which:
enumerate a large number of diseases and give methods of diagnosis and treatment.
They deal with surgery, obstetrics, baths, dies, hygiene, infant-feeding, and medical
education. The approach was experimental, and the dissection of dead bodies was
being practiced in the course of surgical training.” (115)
Nehru’s history participates in a discursive change already well-underway by the time the
British quit India. As historian Gyan Prakash has noted, “by the early twentieth century, then,
the authority of science had become widely dispersed” and “spaces ranging from major colonial
cities to small district towns witnessed the permeation of science as a grammar of transform-
ation” (63). While colonial discourse had stigmatized the east as “metaphysical and out of touch
with modernity,” by the late nineteenth century the Hindu intelligentsia had begun to argue
“with remarkable ingenuity and deep cultural learning that the ancient Hindus had originated
scientific knowledge and that this justified the modern existence of Indians as a people” (86).
Science, including medical science, was cast as endemic as well as utopian in its potentials. As
anyone familiar with Indian history since partition and independence is well aware, the opti-
mism of Nehru and others did not manifest is a real utopia, and especially not for minorities
within India.This chapter considers the representation of disability in a selection of Anglophone
Indian fiction and argues that medical violence and medical interventions take on politicized
symbolic weight which is informed by a post-colonial context and the perceived heritage of
clinical medicine. Authors including Salman Rushdie, Rohinton Mistry, Anita Desai, Jhumpa
Lahiri, Indra Sinha, and Firdaus Kanga, create historically informed metaphors around disabled
central characters who are confronted by medical violence and corrupt physicians, and create
in attending doctors or healers a personification of larger “social ills” or unjust impositions of a
controlling and constraining society upon the individual.
Disability and the excisions of the nation: Salman Rushdie

and Rohinton Mistry
“The Indian nation-state as we know it today,” Gopal reminds us, is “a consequence of historical
accidents and political transformations that took place over the nineteenth and twentieth cen-
turies” (11). If Nehru’s vision for the nation represents an idealized culmination of these trans-
formations and accidents, the failure of this ideal is represented through a destructive grammar
of science by Salman Rushdie in Midnight’s Children (1981) and The Moor’s Last Sigh. Stephen
Morton suggests that in The Moor’s Last Sigh, “events such as the Emergency and the destruction
of the Babri mosque by Hindu groups signals the failure of Nehru’s liberal vision of postcolonial
modernity” (94). In her reading of Midnight’s Children, Clare Barker draws a similar connection
from a disability-critical standpoint, suggesting that “Saleem’s progressive impairment reflects
the collapse of the Nehruvian ideal” (129).
Midnight’s Children is the first-person narrative of a Bombay Muslim, Saleem Sinai, who
interprets post-Independence national history as a series of stigma enacted upon his body,
resulting in his progressive, violent disablement, and the loss of magical gifts with which he
was born. Saleem describes the ultimate results of three decades’ allegorical battering, noting
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that he is “nine-fingered, horn-templed, monk’s-tonsured. Stain-faced, bow-legged, cucumber-

nosed, castrated, and now prematurely aged” (Rushdie 447). As Barker suggests, Rushdie makes
“extensive use of the body and biopolitics to represent the tensions between difference and
homogenization, diversity and regulation” (127).
Saleem loses his magic to coercive medical interventions which are performed because he
is perceived to be abnormal. He is repeatedly coerced into the Breach Candy Hospital, where
he always suffers trauma or deletion of a magic gift or potential. It is prophesied of Saleem that
“doctors will drain him” and “tyrants will fry him,” and, indeed, even after he is an adult without
parents to drag him to the hospital, the perpetration against his body continues at the hands of
physician-like officials (Rushdie 87). The role of tyrant and doctor fully merge in the novel’s
final chapters in the person of a fictionalized Indira Gandhi, who oversees the sterilization of
Saleem and 500 other magical children in a top-secret prison-clinic. Indira Gandhi, like the
many bad doctors who try to regularize Saleem’s body in childhood, uses medical violence to
enforce uniformity, countering her father Nehru’s vision for a diverse India supported by medi-
cine adapted to work for, rather than upon, the Indian people.
This reading of disability in Midnight’s Children is complicated by Saleem’s unreliability, spe-
cifically his indeterminate ability to represent his body, which is brought to light by a visiting
medical doctor who “impugned my state of mind, cast doubt on my reliability as a witness, and
Godknowswhatelse” by claiming to “see no cracks” (Rushdie 65). The deployment of a doctor
to force the question of the narrator’s sanity is one of the strongest parallels between Midnight’s
Children and G.V. Desani’s All About H Hatterr (1948). Within the first pages of H.Hatterr, as the
first-person narrator describes the process of finding a publisher for the text in hand, he notes
that after rejection of the manuscript by one press, “I passed it elsewhere. And he referred me to
a well-known psychiatrist friend of his (at a mental clinic). The doctor posted it, with an invi-
tation to meet him –professionally” (Desani 4). This narrator, like Saleem, opens the door for
scrutiny of his mental health, drawing attention to the division between the perceptions of the
rationality-imposing doctors and the fantastic world he narrates. The tension between the world
of these interloping doctors and that of the narrators contributes to the sense of a competition or
a tension between imaginative self-fashioning and more exclusionary ways of seeing the world.
Even as Rushdie makes disability central to Midnight’s Children, his disability representations
are not unilaterally positive. Neil ten Kortenaar describes Midnight’s Children as “a compendium
of every English-language idiom referring to the body that Rushdie can think of ”; pointing
toward disability clichés that abound in the novel (86). Rushdie employs disability tropes –for
instance, equating blindness with folly in the person of Ghani, and deafness as an analogue
for animality or chaos in the Sundarbans’ narration –and to some extent figures disability as
a spectacle. Graham Huggan has noted that “the figure of Saleem Sinai, the novel’s narrator-
protagonist” invites reading “as an Orientalist merchant cannily inviting the reader to sample his
own, and India’s, exotic wares,” which include “snake-charmers, genies, fakirs: elegant saris and
crude spittoons,” in addition to, in my reading, disabled bodies (72). In a scene focalized through
the consciousness of Saleem’s mother, Amina, as she makes her way through a Bombay slum, her
observation takes on tones of horror, censure, and fascination as she observes a traditional healer
“fastening twigs and leaves to shattered limbs, wrapping cracked heads in palm fronds, until his
patients resemble artificial trees” (Rushdie 84). Amina effectively enables the reader to stare at
sick and disabled bodies in the slum as she encounters them herself.
In Rushdie’s The Moor’s Last Sigh, Moraes, the disabled first-person narrator, is less obsessive
about the metaphoric tangencies between his body and the polity around him than Saleem.
However, Moraes also notes the metaphorical connections between the city he lives in and his
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own disabilities, and experiences similar metaphoric violence as medics attempt to normalize
his body. Rather than delving into the ghoulish, cartoonish, and cinematic in recounting his
suffering under medicine, he all but bypasses recounting the torments of the clinic. “I will spare
you the doctors,” Moraes says, acknowledging parenthetically that
(To this day the words “Breach Candy Hospital” conjure up, for me, the memory of a
sort of house of correction, a benevolent torture chamber, a zone of infernal torments
run by well-meaning demons who mortified me.)
(Rushdie 162)
“Mortified,” with its several connotations, suggests that Moraes has been both embarrassed
and physically scourged. This “benevolent torture chamber” carries a sense exorcism in the
historic European sense, and especially so given that Moraes’s foregrounded matrilineal heri-
tage is Spanish Catholic. The possibility that the Breach Candy Hospital may be working on
behalf of a vindictive and restrictive European god recurs when Moraes loses his potency in a
clinical encounter. Moraes’s loss of potency is the end of the family line begun in his parents’
mixed (Jewish and Catholic) marriage. As in Midnight’s Children, the hospital becomes both
catalyst and site for parental rejection as Moraes’s father Abraham indicts his son: “ ‘the one
thing I wanted from you’ he spat at my bedside at the Breach Candy Hospital, ‘even that
you can’t give me now’ ” (Rushdie 341). Moraes becomes impotent against the backdrop
of a recently renamed Mumbai which is becoming increasingly intolerant as violent ethno-
nationalism comes to the fore. The hospital –in curtailing the multiple differences brought
together in Moraes’s person –carries out an act of ethnic normalizing through a violent
“repair” to a disabled body.
Dissolution and persistence: Rohinton Mistry, Anita Desai,

and Jhumpa Lahiri
The sense of things “coming to an end” through disablement is also present in the work of Parsi
author Rohinton Mistry. Mistry –an author who infuses his short fiction and novels with an
awareness of the fallibility of the human body –has often been contrasted with Rushdie, as,
while both write contemporaneous fictions that engage with problems of minority identity in
India, they demonstrate divergent aesthetic approaches. Ayelet Ben-Yishai and Eit an Bar-Yosef
have suggested that, while “Rushdie’s representation of the Emergency, and of Indira Gandhi,
is all crisis and hyperbole,” Mistry’s less uproarious fictions have “the ability to contain both
crisis and continuity and thus to address the event’s political complexity” (166). In contrast to
Rushdie’s quasi-demonic family-planning clinic, Mistry in A Fine Balance (1995) tells the more
pedestrian but equally devastating story of mismanagement and corruption in a satellite medical
clinic. When tailors Ishvar and his nephew Omprakash are forced to undergo vasectomy as part
of the family planning program, a doctor is bullied by a corrupt official with a grudge against
the tailors’ family to misdiagnose Omprakash with testicular cancer and castrate him. Ishvar
subsequently contracts gangrene due to poor hygiene at the sterilization camp, and, although he
presents with very pronounced symptoms –“Ishvar’s legs were swollen like columns. His body
burned with fever. From the groin to the knee the flesh had become black” –he is refused diag-
nosis when he returns to the clinic, as no doctor associated with the family-planning program
is willing to admit the relationship between the forced surgery and the illness (Mistry 627). As
a result of doctors’ dissembling, Ishvar loses both legs.
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Eli Park Sorensen has suggested that in Mistry’s works, “an exploration of the cause-effect
relationship” takes on “an almost obsessive character” (206). However, this exploration is as
much invested in when the causal relationship seems to give way to repetition and continuity;
as Hilary Mantel has noted, in reading A Fine Balance (1995), “one feels controlled, as if by a
bad god” (qtd in Sorensen 195). While the violence against Omprakash is a causal outcome
of Omprakash and his father’s actions, Ishvar’s disablement is perhaps a manifestation of the
bad god, as it creates in his body a replacement for Shankar, a disabled beggar who died a few
chapters earlier. Like Shankar, Ishvar must use a platform with wheels to travel about; like
Shankar, Ishvar begs to earn a living, relinquishing the multi-generational mission of Ishvar and
Omprakash’s family to escape caste constraint and attain better economic prospects for their
family.With Omprakash unable to procreate and Ishvar unable to use the foot treadle on a con-
ventional sewing machine, this mission is apparently forfeit. The medical clinic thus provides
both causal and symbolic closure through violence in the last chapter, in part by replacing one
disabled body with another.
Disability and socioeconomic submission function as a contingent pair in A Fine Balance.
When they are able-bodied, the four central characters reject social scripts: Dina Dalal tries
to maintain financial and domestic autonomy, against gender expectations; Maneck is apath-
etic about stepping into his upper-middle-class career; and the tailors want to be tailors,
rather than doing the dirty and dangerous work designated for their caste. Dina becomes
anorexic after her attempt to resist her brother’s patriarchal authority fails, and the tailors
become disabled and then give up their struggle, accepting a static existence in itinerant
penury. Beyond the loss of their employer, Dina, the tailors are not completely unable to sew;
Omprakash has all the hands and feet necessary to operate a conventional sewing machine,
and Ishvar still has his hands; so why not sew? Perhaps, and very plausibly, the insult as well
as the injury –which is to say, social devaluation read into disablement, in combination
with the physical sufferings imposed by their disabilities –cow these two men, who have
previously shown remarkable adaptability, tenacity, and willingness to take risks. Doctors are
represented as having the power to excise the potential for change, and, as in Rushdie, dis-
ability is the evidence of the excision.
However, Anglophone Indian fiction also offers depictions which engage with disability
as a mode of persistence rather than an ending, and the domestic outcomes for other women
characters contrast Dina Dalal’s sad ending. Novelist Anita Desai, like Mistry, takes an interest
in the domestic space and domestic economy, but differs from Mistry in that she places less
emphasis on the historical contingencies of most of her works: as Chandra Chatterjee suggests,
in Desai’s fiction, a preoccupation with society recedes, leaving an “unfettered vacuum” (123).
Desai herself claims to write “the kind of novels that have been catalogued by critics as psycho-
logical, and that are purely subjective” (“Timid Movement of a Wing” 21). In Desai’s acclaimed
novel Clear Light of Day (1980), the psychological and the subjective are explored through the
disabled character Baba. Clear Light of Day employs shifting third-person focalization through
multiple characters, including the central protagonist Bimla (called Bim), who is Baba’s primary
caregiver, Bim and Baba’s sister Tara, and occasionally other characters. In one passage, in which
the adult sisters look upon Baba napping, their consciousnesses are amalgamated into a united
focalization:
Baba was already asleep on his bed in the veranda when the sisters slipped quietly past
[…] lying there in the dark, dressed in white, breathing quite imperceptibly, he might
have been a creature without blood in his veins, without flesh on his bones, the sisters
thought as they tiptoed past him, down the steps to the lawn to stroll. (40–41)
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The sisters have shared a perception, and, although they underestimate the extent of the interior
life revealed through Desai’s occasional focalization through Baba’s consciousness, they assign
value to him that others do not. The sisters are aware even in childhood that “Baba’s very life
and existence” is a disappointment to their parents, yet they “only sense all of this, they did not
share it, except unwillingly. To them Baba was the perpetual baby who never grew up –that
was his charm, they felt, and never thought of his actual age” (Desai 130). Although neither
Bim nor Tara are perpetually charmed by Baba –both lash out at him verbally over the course
of the novel –both sisters on the whole demonstrate solidarity with and love for their brother.
The greatest solidarity is perhaps that of Bim, who is subject to misunderstanding and abuse
as she takes responsibility for her brother’s care.The most significant affront to Bim comes from
the medical doctor Biswas, who courts Bim as a young woman. When she rejects his suit, he
makes a pronouncement in respect of her rejection:
“Now I understand why you do not want to marry. You have dedicated your life to
others –your sick brother and your aged aunt and your little brother who will be
dependent upon you all his life.You have sacrificed your life for them.”
Bim’s mouth fell open with astonishment at this horrendous speech so solemnly, so
leadenly spoken as if engraved on steel for posterity.
(Desai 97)
Doctor Biswas, who has already revealed himself as pedantic and without imagination in his
discussion of Mozart and the violin, inserts a diagnosis of Bim’s life choices here. However, as
he tries to lay bare her motives, it is his psychology that is left quite naked as he uses his social
authority as a doctor to insulate himself from Bim’s romantic rejection.
The doctor is made to look foolish in part through the nonchronological ordering of the
novel, which presents Bim in late middle-age before the damning diagnosis of Dr Biswas in her
youth. While Bim makes sacrifices for Baba, the reader already knows that she will not endure
quite the utter sacrifice or the living death denoted by Biswas’s comments. As it is framed by
Desai, the “leadenly spoken” diagnosis-insult of Doctor Biswas validates Bim’s rejection of his
marriage suit rather than enabling the doctor to pathologize it. Clear Light of Day establishes
Bim’s caregiving as an expression of agency in the context of limited choices, as opposed to a
simplified, total sacrifice.
For another protagonist, the patriarchal imposition upon her works in something of an
opposite way: Bibi Haldar wants to marry and have children but is impeded by her community’s
beliefs about disability. Short fiction writer Jhumpa Lahiri also puts diagnostic language front
and center in her 1999 story collection The Interpreter of Maladies (1999), and especially so in
the story “The Treatment of Bibi Haldar,” in which the eponymous protagonist is “liable to
fall unconscious and enter, at any moment, into a shameless delirium” (159). This delirium is
characterized as “shameless” by the story’s caring-yet-censorious first-person plural narrator,
who seems to be an amalgam of the women of Bibi Haldar’s apartment block. The narrating
women or woman –the narrator maintains a plural/singular, we/I voice throughout the story –
observe that Bibi wants to join them in performing conventions of their class and gender: “like
the rest of us, she wanted to serve suppers, and scold servants, and set aside money in her almari
to have her eyebrows threaded every three weeks at the Chinese beauty parlour” (Lahiri 160).
However, Bibi is denied a conventional gender role due to her disability. She yearns to marry,
but, upon placing a marriage advertisement that reads “GIRL, UNSTABLE, HEIGHT 152
CENTIMETRES, SEEKS HUSBAND” finds no one interested: as the women tell us, “the
identity of the prospective bride was no secret to the parents of our young men, and no family
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was willing to shoulder so blatant a risk” (Lahiri 165). This “risk” clearly scares the women as
well as any prospective bridegroom: after Bibi has a seizure in a public park, the women explain
that “a group of our husbands carried her home” and “we followed behind, at what we assumed
to be safe distances, holding our children by the hand,” thereby literalizing Bibi’s exclusion from
the community she desires (Lahiri 168).
Attempts to treat Bibi Haldar involve diverse religionists as well as diverse medics. “For the
greater number of her twenty-nine years, Bibi Haldar suffered from an ailment that baffled
family, friends, priests, palmists, spinsters, germ therapists, prophets, and fools,” the women tell
us, going on to note that “treatments offered by doctors only made matters worse. Allopaths,
homeopaths, ayurvedics –over time, all branches of the medical arts had been consulted” (Lahiri
158). While the women do not differentiate between medical and other paradigms, their recol-
lection of Bibi’s father suggests that he had a dominantly rationalistic, but religiously informed,
paradigm in mind as he searched for a solution:
In his final years, the old man, a teacher of mathematics in our elementary schools,
had kept assiduous track of Bibi’s illness in hopes of determining some logic to her
condition. […] He wrote letters to doctors in England, spent his evenings reading
casebooks at the library, gave up eating meat on Fridays in order to appease his
household god.
(Lahiri 166)
His efforts, however, are to no avail, as the women explain: “though in his youth he had received
prizes for his ability to deduce square roots from memory, he was unable to solve the mystery
of his daughter’s disease” (Lahiri 166). Bibi’s father dies, and she is left to the guardianship of
her remaining male relative, and one sense of the titular “treatment” gives way to another: she
is given increasingly poor treatment by her cousin and his family. The cousin finally abandons
Bibi, and the penultimate paragraphs of Lahiri’s story seem to anticipate Bibi’s death through
her illness, teasing the stereotyped ending described by Mitchell and Snyder, in which “narrative
inevitably punishes its own prurient interests by overseeing the extermination of the object of
its fascination” (57). However, in a surprise ending, Bibi turns out to be pregnant and quickly
attains economic autonomy by taking over her cousin’s abandoned shop. Childbearing has the
very unlikely effect of curing Bibi’s seizure disorder. Beyond Lahiri’s mug-game of switching
death for life at the last moment, she innovates in respect of disability representation by making
informal, female agency central to the resolution of the story. The women, disability-phobic as
they are, provide the crucial component of Bibi’s “treatment” when they boycott her neglectful
cousin’s shop, and later when they support her business. For all her father’s efforts to improve
Bibi’s situation through medicine, it is ultimately social intercessions that enable her to attain a
semblance of the life she craves.
Disability and counter-humiliation in Indra Sinha and Firdaus Kanga

As in Bibi’s case, disabilities complicated by social life are often of mysterious or fortuitous
origin. However, the provenance of disability may also be historically particular, creating in
the body what Amitav Ghosh describes as “predicaments which are unique predicaments, not
repeatable in time and place” (qtd in van Bever Donker 51). People disabled by unique predica-
ment may present disability identities which are not only intersectional with, but predicated
upon, race, gender, or other social location. Systemic violence and mass violence can generate
contiguous disabilities, and may even impose corporeal continuity rather than difference as
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techniques of industry and technologies of war disable recognizable cohorts. Such historically
contingent disability experience is the focus of Indra Sinha’s 2007 novel Animal’s People.
Animal’s People is set in a fictional city modelled upon the city of Bhopal, which was affected
by an explosion and pesticide leak in a Union Carbide plant in 1984. Narrated in the first
person by a poor and disabled young man who was orphaned in the gas leak, Animal’s People
tells the story of a preponderantly disabled community from its most severely disabled corner,
a slum called the Nutcracker: the unsightly factory was placed beside the slum, and therefore
disproportionately killed and disabled poor people. Within global considerations, the factory
was allowed to operate without effective safety protocol by an American company because that
company perceived an Indian city as a location available for risk. As Pablo Mukherjee suggests,
“the blasted and ravaged postcolonial grounds of Khaufpur/Bhopal” present “the toxic logical
outcome of the contemporary mantra of globalization and development” manifest in damaged
bodies (231). Animal, the narrator, shares with Mistry’s disabled character Shankar the impos-
ition of his disabilities upon him by profit-seekers; however, while Shankar’s disabilities are
imposed directly, Animal’s disabilities are an accidental by-product of a globalized capitalism.
Twenty years after the disaster, the Khaufpuris are still being denied ameliorative justice
through officious legal delay. As Animal explains,
the case against the Kampani [the company] had been dragging on endless years. It
stood accused of causing the deaths of thousands on that night, plus it ran away from
Khaufpur without cleaning its factory, over the years the poisons it left found their way
into the wells, everyone you meet seems to be sick. The Khaufpuris were demanding
that the Kampani must pay proper compensation to those whose loved ones it killed,
whose health it ruined.
(Sinha 33)
One of the ways in which the company evades justice is by controlling doctoring in Khaufpur.
A preponderance of disabled people comprises a visible counterproof to the company’s denials
of the atrocity and its scale, and these bodies thus become a potential legal asset. “Some bigwig”
(Sinha 112) replaces the doctors who would keep an accurate record of the Khaufpuri’s
symptoms with doctors who function as professional disability-deniers, “doctoring” the med-
ical record on behalf of their benefactors. However, Elli Doctress, who comes to Khaufpur from
America, provides a counterpoint to the collaborators who control medicine in Khaufpur.
Even after he becomes friends with Elli, Animal has both hope and doubt that she has the
imaginative adaptability to engage in Khaufpur. Animal tests Elli in this respect, using the device
he uses to test other outsiders: Animal humiliates himself, employing self-poor-shaming and
self-disability-shaming to challenge and teach. As Ashis Nandy suggests, in the presence of an
asymmetry of power, “humiliation can be a means of renewal and re-education for both sides”
(271) and “playful counter-humiliation” can in some contexts be a “means of defiance” (272).
Animal’s perpetual defiance begins with his name, which originated as a disability slur against
him in the orphanage where he grew up. As he explains, “some things have a logic which
cannot be denied. How do you shit, when your arse is in the air and your legs too weak to
squat?” going on to suggest he looks like “a donkey dropping dung” (Sinha 16). Animal offers
this self-portrait to at least two interlocutors simultaneously, as he dictates his story to a foreign
journalist knowing the journalist will in turn render that oral narrative for print circulation
and a first-world readership Animal calls “eyes” “looking for things to see” (Sinha 12). Animal’s
disability-self-mockery often targets these distant eyes as well as charitable interlopers in his
midst. When the foreign journalist greets Animal “with hushed respect as if speaking a prayer”
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(Sinha 4), Animal responds with verbal filth in a language the journalist cannot understand, cul-
minating in a “filthy song”: “I may be just a twisted runt/But I can sniff your mother’s cunt” (5).
When the middle-class activist Zafar tells Animal to “think of yourself as specially abled,” and
asserts that Animal is “a human being, entitled to dignity and respect” (Sinha 23), Animal’s retort
comes replete with intentionally lewd language: “my name is Animal” and “I’m not a fucking
human being, I’ve no wish to be one” (24).
Animal employs this mode of counter-humiliation with Elli Doctress in the scene in which
she visits his hovel. After he parries her gravitas and “pigeon-coos” about his impoverishment
with excrement jokes (Sinha 184), Animal tells Elli what disgusts him far more than the con-
dition of his house:
“What really disgusts me is that we people seem so wretched to you outsiders that
you look at us with that so-soft expression, speak to us with that so-pious tone in your
voice.”
She asks very seriously, “Don’t people here deserve respect?”
“It’s not respect, is it? I can read feelings. People like you are fascinated by places like
this. It’s written all over you, all you folk from Amrika and Vilayat, jarnaliss, filmwallass,
photographass, anthrapologiss.”
“I’m not a jarnalis, I’m a doctress. And I did mean respect.” (184–85)
Animal’s lumping-in of Elli with the other oppressive and exploitative experts is a challenge
made in the context of their provisional friendship; he turns her piety on its end to make her
think critically about the nature of her involvement in Khaufpur.When Nandy asks rhetorically
“can we assume that colonialism truly ends when both colonizers and colonized acquire the
psychological capacity to see colonialism as a more embarrassing or humiliating memory for
the former colonizers?” he is perhaps posing a question parallel to the one Animal poses to Elli
(Sinha 264). Rather than taking on humility as a disabled person from a marginal community
within a marginalized nation, Animal makes Elli feel the stigma as a Westerner and a doctor,
citing these as the degraded identities.
Disabled, gay author Firdaus Kanga also presents a narrative of counter-humiliation in his fic-
tional bildungsroman Trying to Grow (1989). Trying to Grow begins with the narrator Brit being
taken to the faith-healer Wagh Baba by his father, Sam, who seeks a cure for Brit’s incurable osteo
imperfecta. This healer, like the other specialists Brit’s father consults, proves to be a swindler
and an abuser. Brit is made to endure many “mumbo-jumbo” interventions, which include
being made to drink powdered pearls and eat the bone marrow of a goat, and is subjected to
the weird ministrations of the quack healer Rutty Regina (Kanga 4). Although the child Brit is
subject to humiliation in these encounters with false healers, the adult-narrating Brit shapes the
narrative in such a manner that it is the father who cannot accept “a stunted cripple,” rather than
the stunted cripple, who is disgraced (Kanga 39) In this fiction (as well as his later nonfictional
book Heaven on Wheels (1991), Kanga reverses the pattern observed by G. Thomas Couser in
his work on disability and life writing, wherein the parents of disabled caregivers violate their
children’s autonomy by writing their lives: Brit, and later the autobiographical Kanga, obtains
both financial and personal autonomy by assuming license to write about his parent-caregivers.
Brit’s progressive alienation from his father begins in early adolescence, and is readily evident in
a punishment meted out by his father which fails to have the desired effect:
Then he spanked me and spanked me and spanked me and said I was cheeky, and
I said “is that all? I’m not scared, you know.” I really wasn’t because spanking was to a
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fracture what a firework is to the A-bomb. Besides, I wanted to laugh, because every
time Sam brought his hand down he hesitated, looking for a target that wouldn’t crack.
(Kanga 52)
Brit counter-humiliates his father, both in the scene and again in the act of recounting it,
turning his father’s hesitation and uncertainty about how to handle his disabled son against him.
While Elli is often successful in adapting her expectations when she is challenged by Animal,
Brit’s father is not successful in adapting to the fact that he has a disabled son. This subverted
spanking is a turning point for Brit, and after this encounter, Brit’s father stops bringing home
healers, having lost the authority to mortify (hurt and embarrass) his son. Later in adolescence,
when Brit’s queerness comes to light, his father disapproves, but there is no longer any question
of his demanding that his son change what he cannot change. Brit has established his autonomy
through superior force of character.
Conclusion
The nascent politics of Trying to Grow are at evidence in its bad doctors, the faith healers: Kanga
demonstrates distain for precolonial Indian culture throughout the novel. Healers imagined by
Kanga as belonging to the precolonial world are the vehicle for an expression of scorn, much
as doctors become metonyms for capitalist violence from Animal’s point of view. In the patri-
archal doctor-suitor of Desai, the well-meaning but ineffectual father-doctor of Lahiri, and
the corrupt doctors of Mistry and Rushdie, physicians make manifest larger political realities
in their relationship with or attitudes towards disability and disabled characters. These authors
create in wrongheaded doctors a metaphor for various flawed systems of regulating or organ-
izing human life as they narrate the subjective experience of post-Nehruvian Indian history.
Even as disabled characters are at times stereotyped or co-opted in service of other concerns,
they by and large function to show up the violence of authoritarians in the imposition their
reductive beliefs. Rather than docile bodies to be assailed in the course of their metaphorical
function, disabled characters provide the energetic center of narrative and direct a social critique
that is most often not merely metaphorized upon the disabled body, but thought through with
disabled subjectivity as its interpretive center.
Notes
With thanks to Dr Shane Neilson for diagnosing Bibi Haldar’s miraculous recovery.
Works cited
Anjaraia, Ulka. “Introduction: Literary Pasts, Presents and Futures” in A History of the Indian Novel in
English, ed. Ulka Anjaraia. Cambridge: Cambridge University Press, 2015, pp.1–30.
Ben-Yishai, Ayelet and Eit an Bar-Yosef. “Emergency Fictions” in A History of the Indian Novel in English,
ed. Ulka Anjaraia. Cambridge: Cambridge University Press, 2015, pp.162–176.
Barker, Clare and Stuart Murray. “Disabling Postcolonialism: Global Disability Cultures and Democratic
Criticism.” Journal of Literary and Cultural Disability Studies, vol.4, no.3, 2010, pp.219–36.
Chatterjee, Chandra.“The ‘UnfetteredVacuum’: a Postcolonial Reading of Anita Desai’s Journey to Ithaca and
Fasting, Feasting” in Convergences and Interferences: Newness in Intercultural Practices. Rodopi: Amsterdam,
2001, pp.121–32.
Couser, G. Thomas. Vulnerable Subjects: Ethics and Life-writing. London: Cornell University Press, 2004.
Desani, G.V. All About H Hatterr. London: The Saturn Press, 1949 (1945).
Desai, Anita. Clear Light of Day. London: Heinemann, 1980.
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———. “The Timid Movement of a Wing” in Anita Desai: Critical Perspectives, ed. Devindra Kohl and
Melanie Maria Just. New Delhi: Pencraft International, 2008, pp.19–21.
Garden, Rebecca. “Sympathy, Disability, and the Nurse: Female Power in Edith Wharton’s The Fruit of the
Tree.” Journal of Medical Humanities, vol.31, no.3, 2010, pp.223–42.
Gopal, Priyamvada. The Indian English Novel: Nation, History, and Narration. Oxford: Oxford University
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Hogan, Patrick Colm. Colonialism and Cultural Identity: Crises of Identification in the Anglophone Literatures of
India, Africa, and the Caribbean. Herndon: State University of New York Press, 2000.
Huggan, Graham. The Postcolonial Exotic: Marketing the Margins. Abingdon: Routledge, 2001.
Kanga, Firdaus. Trying to Grow. London: Bloomsbury, 1989.
Lahiri, Jhumpa. Interpreter of Maladies: Stories of Boston, Bengal, and Beyond. New York: Harper Collins. 1999.
Kipling, Rudyard. The Complete Supernatural Stories of Kipling, ed. Peter Haining. London: W.H. Allen, 1987.
Meekosha, Helen. “Decolonising Disability: Thinking and Acting Globally.” Disability and Society, vol.26,
no.6, 2011, pp.667–82.
Mistry, Rohinton. A Fine Balance. Toronto: McClelland and Stewart, 1995.
Mitchell, David and Sharon Snyder. Narrative Prosthesis: Disability and the Dependencies of Discourse. 2nd ed.
Morton, Stephen. Salman Rushdie: Fictions of Postcolonial Modernity. Basingstoke: Palgrave Macmillan, 2008.
Mukherjee, Meenakshi. The Perishable Empire: Essays on Indian Writing in English. Oxford: Oxford University
Press, 2000.
Mukherjee, Pablo. “‘Tomorrow There Will Be More of Us:’ Toxic Postcoloniality in Animal’s People” in
Postcolonial Ecologies: Literatures of the Environment, ed. Elizabeth DeLoughrey and George Handley.
Oxford: Oxford University Press, 2011.
Nandy, Ashis. “Humiliation: The Politics and Cultural Psychology of the Limits of Human Degradation”
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Routledge: Abingdon, 2011, pp.261–76.
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Delhi: Oxford University Press, 2001.
Quayson, Ato. Aesthetic Nervousness: Disability and the Crisis of Representation. New York: Columbia
Rushdie, Salman. Midnight’s Children. Toronto: Random House, 1981.
———. The Moor’s Last Sigh. New York: Knopf, 1995.
Sinha, Indra. Animal’s People. New York: Simon and Schuster, 2007.
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ten Kortenaar, Neil. Self, Nation, Text in Salman Rushdie’s Midnight’s Children. Montreal: Queen’s-McGill
van Bever Donker, Vincent. Recognition and Ethics in World Literature: Religion, Violence, and the Human.
Munich: Ibidem, 2016.
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14
DISABILITY AND
CONTEMPORARY LITERATURE
Antinormative narratives of embodiment
David T. Mitchell
I would tell all the stories I knew in which people went wrong but the nervous system
was right all along.
Rich 293
Introduction: antinormative narratives of embodiment

In this analysis of disability and contemporary literature we group together some contemporary
novelistic approaches to disability as an outline of alternative traditions taking shape wherein
the representation of disability explicitly mutates into alternative capacities of living. One quick
example will suffice to get this argument off the ground: the crippled boy at the end of Robert
Brownings’s The Pied Piper of Hamlin (1842) cannot keep up with his fellow able-bodied peers as
they follow the piper’s mesmerizing music to their deaths in the river.The hypnotic tune works
a revenge upon the townspeople by the piper for not being paid as promised for ridding the
town of rats.Yet, while others fall to their doom in the river, the crippled boy’s inability to keep
up with his peer group preserves him and exposes what we call the unexpected “capacity of
incapacity” against which social orders often narrate themselves in various exterminatory logics.
Novels which trade on such ironies of incapacity will be referred to throughout this chapter as
“antinormative narratives of embodiment.” Such works of narrative, performative, poetic, media,
and theatrical range represent crip/queer bodies as productive difference in order to reveal ways
to approach peripheral embodiment as akin to when queer theorist Kevin Floyd describes being
queer as a “certain kind of skilled labor” (155). Taken collectively, these narratives provide a rep-
ertoire of tools to expose examples of what Darwin called in Origins of the Species (1859) “descent
with modification” (the random, mutating path of evolution that links all organisms to a shared
evolutionary history of ancestral structures and potentially adaptive futures) (378). Antinormative
narratives of embodiment represent forms of literary adaptation moving consciously away
from traditions of representational deployments of disability as a metaphor of individual and/
or social collapse bereft of insights into disability’s material conditions as we analyze in Narrative
Prosthesis: Disability and the Dependencies of Discourse (2000). Here we want to examine the advent
of alternative neoliberal narrative spaces as allowing a certain kind of movement –some “room
for maneuver” in narrative theorist Ross Chambers’s terms –toward an alternative resistant, rep-
resentational tradition of those living lives in peripheral embodiments (3).
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David T. Mitchell
Within the antinormative narrative of embodiment, plot turns increasingly rely on the reve-
lation of the normative body’s secreted “dysfunctionality,” the perennial operations of embodi-
ment that cover over in-built biological inefficiency, disjuncture, weakness, and incapacity. In
order to reverse the usual line of diagnosis imposed upon disabled bodies, these narratives
emphasize normalcy as reliant on a mechanistic adherence to scripts of pathology in other
bodies to maintain fictive foothold on formulas of normative embodiment. Within embodied
scripts of normativity the disabled body is culturally positioned as a derivative identity, sec-
ondary and inferior to socially inscribed norms of ablebodiedness.
In the parlance of new disability materialisms, we might say that within neoliberalism disability
operates in at least two distinct domains: (1) disability actively references the United States’ claims
to global exceptionalism –the inclusive adoption of policies toward disabled people as a sign of
the nation’s embrace of diversity in neoliberalism; and (2) antinormative narratives of embodi-
ment employ disability’s radical potential to unseat traditional understandings of normalcy as
subject to(?) integrity, cognitive coherency, and typical functionality. The first mode involves
disability as a sign of neoliberalism’s tolerance of difference (i.e., a rhetoric of inclusionism
realized by claims to American exceptionalism); the second mode unveils the capacities of incap-
acity that disability embodies as a key strategy in the antinormative narrative of embodiment’s
neomaterialist revelation of imperfection as a creative, biological force. It is important to state
at the start that this is not a euphemistic strategy wherein disability’s defining undesirability
is covered over by less objectifying terminology and insincere public sentiment; rather these
works (and for the purposes of this chapter we will only be working with Anglophone con-
temporary novels of the past 35 years: Richard Powers’s The Gold Bug Variations [1993], Stanley
Elkins’s The Magic Kingdom [1985], and Mark Haddon’s The Curious Incident of the Dog in the
Night-Time [2004]) employ the unruly material agency of disabled bodies as a wellspring for
creative interventions in social systems gone terribly awry. The readings that follow regarding
the representational tactics of disability evolved within antinormative novels of embodiment
explicate the creative agencies of crip/queer materialities as instances of adaptive knowledge
and strategies of the pursuit of being that exceed neoliberal normative scripts of tolerance for
those “engaging [the] discrepant materialisms” of peripheral embodiments (Kruks 258).
Variations on variation
Richard Powers’s 1993 novel, The Gold Bug Variations, tries to capture the haphazard process
by which four basic genetic codings, “the building blocks of life,” result in complex human
organisms founded on principles of diversity. Within neoliberal efforts to privatize collectively
held resources, the Human Genome Project’s attempt to copyright a normative map of genetics
stands as exemplary. Powers’s novel exposes not only the fallacy of such an undertaking, but also
why it would miss the very point of genetic diversity as an engine that produces so many organ-
ismic variations (i.e., mutations). As one of the novel’s characters, the geneticist Dr. Ressler,
explains: “We like to think of nature as unerring. In reality, everything it does is an approxi-
mate mistake” (606). We might refer to Ressler’s theory as neomaterialist in the sense that it
recognizes transcription errors as a more fully agential expression of life than its biopolitical
ableist corollary, perfectly controlled repetition, which supplies the background for a mechan-
istic, deterministic, and automaton-like genetic sequencing process as desirable.
This reading’s emphasis on variation rather than sameness intends to overwrite Fordist
assembly line concepts of heredity as efficiency regulating the generation of species normativity.
The mutation thesis at the heart of Gold Bug, that genetic mass production produces accidents
resulting in large-and small-scale biological variations, situates the plot in the transitional
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Disability and contemporary literature
historical moment of the 1950s, a period characterized by the competitive international sci-
entific search for the double helix. Additionally, the 1950s lay at the cusp of a transition from
liberal humanism to neoliberal biopolitics. While liberalism and neoliberalism involve efforts to
engineer predictive patterns of human biology, neoliberalism encourages tightly bounded forms
of difference to emerge out of inherently dynamic, heterogeneous, developmental processes.
Variation, for Powers, turns the weakness of homogeneous production systems (that is, the
objective of reigning in threats of difference in actively maintaining the elusive stability of stand-
ardization) into the creative basis for organismic transformation rather than replicability. What
Elizabeth Grosz says of Darwin’s concept of variation might also be said of Powers’s novelistic
method as well: “the continuity of life through time…is not the transmission of invariable or
clearly defined characteristics over regular, measurable periods of time (as various essentialisms
imply), but the generation of endless variation, endless openness to the accidental, the random,
the unexpected” (Nick of Time 7).
At one point in Gold Bug, the protagonist, Jan, stares at her uncle, Jimmy, now recovering in
a hospital bed following a massive brain hemorrhage. Pointedly, the stroke occurs while Jimmy
subjects himself to a medical examination by doctors representing the health insurance policy
sponsored by the company for which he works. The exam is required to solidify his right to a
disability claim and also to approve the reinstatement of his life insurance policy after he inad-
vertently misses a monthly premium payment just prior to his stroke. From the standpoint of
the insurance company, a missed premium results is a fortuitous error in a regulating system
of repetition (the monthly payment schedule), and as such provides a rationale that allows
health coverage to be denied (the paid product to be withheld). With a researcher’s impulse
to bury embodiment’s unwanted alterations in abstraction, Jan runs to the medical library in
order to read about prognoses of recovery from a stroke. Like Auguste Adoné (played by Nick
Nolte) in Lorenzo’s Oil (1992) –a film that would easily fall into this classification of neoliberal
narratives of antinormative embodiment –when the protagonist is overcome by the degree of
pathologizing language used to characterize his son’s disability diagnosis in a medical encyclo-
pedia, Jan becomes quickly overwhelmed by the negativity of the pathological catalogues she
encounters:
There was aphasia, loss of speech, alexia, loss of reading, agraphia, loss of writing, and
agnosia, loss of recognition. Everything a person possessed could be taken away…I
grabbed at every slight ray of optimism. Children’s brains could re-wire, recover from
blows that would wipe out mature adults…I was so high strung that I even found, hidden
in the technical folds, rare benefits from a well-placed lesion. Violent personalities woke up
from apoplexy as loving as a newborn. Pasteur’s massive stroke altered his work for
the better. Dostoevsky’s visionary power followed from lifelong epileptic seizures.
Research proved nothing except that no one could predict injury’s outcome. (544;
our italics)
Reading the medical records, a field whose pace “consigned all texts to the pyre every two
years,” leaves Jan with a feeling of ambiguous guilt in “hoping for [a]‌kinder, comprehensive
solution” (544). Her catalog of miraculous biological repairs and historical rescues from impair-
ment read like a search for alternative positive potentials regarding disability outcomes.
The list takes on the case of a catalog of productive potentials consistent with early efforts
by disability studies in the humanities to reclaim disability as something other than pathology
and biological deviance. In the wake of giving up on a way to return Jimmy to his former self,
Jan remembers an insight passed on to her by Ressler: “the nervous system is like a language;
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David T. Mitchell
the circuitry remains active, historically dynamic while appearing on the surface to be fixed and
unchanging” (543). The memory of this point about subterranean alterations and re-routings
of neural networks enables Jan to read beyond what she initially encounters as Uncle Jimmy’s
ruined body –“His face had collapsed on one side, as if from a bad foundation. His mouth
sagged down to the left, an eighty-year-old’s mouth, unable to produce anything more than a
few raw vowels” (541). Rather than revulsion at embodiment’s complete jettisoning of able-
bodied mastery over its own operations, Jan resists placing Jimmy among the inhuman despite
his medical classification as a “vegetable.” In turn, she is able to reimagine an active life reorgan-
izing itself beneath the topography of an apparently destroyed surface.
The novel’s plot ultimately turns upon this very revelation as Jimmy marshals the monosyllables
of speech left behind by stroke into “crucial bits of information –passwords, memory locations,
patch names –that until then had been the secret domain of the Operations Manager” of
the insurance company (576). Ironically, the “data bits” provided by Jimmy allow Ressler to
unlock a heavily guarded computer network and sabotage it through random messages sent
to employees of the insurance company about the unethical practices of their employer. The
fact that hacking into a computer system requires expertise in binomial commands (I and O
binaries) means that Jimmy’s monosyllabic utterances turn out to be exactly fitted to the job.
In a turn becoming increasingly foundational to the alternative workings of the antinormative
novel of embodiment, the computer hacking ultimately enables the geneticist to blackmail a
corporate profiteer of neoliberal health care coverage into paying for the costs of Jimmy’s hos-
pitalization and life-long recovery.
We call this surprise revelation of an unexpected alternative capacity at the foundation of
disability: the “capacities of incapacity.” The capacities of incapacity underwriting the repre-
sentational innovations of the antinormative novel primarily turn on the identification of an
alternative approach to representations of nonnormative materiality as agentive (“lively” in the
parlance of neomaterialisms) rather than passively inscribed as deviant within medical rubrics
of pathology and dysfunctionality. The constitution of disability and other alternative material-
ities as bodies that fail in their normative scripts relies on notions of embodied privilege within
neoliberal biopower. These formulas of able-bodied desirability (and its constitutive alternative,
crip/queer embodiment’s inherent undesirability) depend on a decidedly constructivist notion
of life as organized around predictive anxieties of what bodies will prove worthy to “let live”
within the decidedly indeterminate futures of biopolitics which should be allowed to “take
life” (Foucault 136). The capacities of incapacity help to demonstrate why normative concepts
of embodiment rest on an ability to anticipate what bodies will pay off if more resources
are poured into their potentials at the expense of those consigned to less productive, under-
resourced existences.
Within our notion of the capacities of incapacity the matter and materiality of bodies come
to the fore with greater prominence and institutes what Rosi Braidotti calls a “biocentered
egalitarianism” (204). A neomaterialist-based, biocentered egalitarianism approaches disability
as instances of varied embodiment that openly rework crip/queer bodies through a more active
notion of subjectivity as a negotiation of “life-forces” (204). The capacities of incapacity dis-
connect and re-operationalize the binary relationship between ability and disability into less
oppositional modes of interaction. “Alternative ecologies of belonging both in kinship systems
and in forms of social and political participation” are inaugurated with respect to alterna-
tive ways of being-in-the-world as disabled and as a more open grappling with the indeter-
minate expressions of biological multiplicity that vulnerable embodiment represents (Braidotti
204). Fully in line with Braidotti’s claims, our approach refuses more evaluative approaches to
mutation that mark some materialities as inherently undesirable, unproductive, and predictively
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selective. Biocentered egalitarianism discounts the utility of the neoliberal question regarding
which bodies will prove most productive in the future (if, in fact, productivity will remain an
oppressive measure of usefulness for bodies within neoliberal biopolitics).
Thus, in the Gold Bug example, the insurance employee, Uncle Jimmy, loses his own coverage
and his employer argues that his decision to let his payment lapse at an untimely moment
removes the corporate responsibility of covering his hospitalization costs. In History of Madness
(1961), Foucault points out that the one constant in the incoherent history of conceptions of
madness is the practice of banishing alterity and then turning around to condemn the banished
person on the basis of his/her culpability for choosing exclusion (507). The utilitarian logic
of refusing coverage on the basis of making Jimmy responsible for losing his own medical
coverage to begin with (this charge is effectively a charge of the individual mismanagement of
his health care needs), is later offset by Ressler’s hacking of the employee communication web
by sending out sporadic messages about ethical quandaries produced by the for-profit provi-
sion of health care insurance industry: “Would you mind if your major medical coverage was
dropped? Enter Y or N to continue” (Powers 617). A later follow-up strand of information
pertaining more directly to Jimmy’s situation appears on company screens as “A stroke victim
is about to be cut loose” (Powers 618). Ressler’s transition from genetic decoder to computer
hacker (another kind of decoding as a form of disability-based resistance), in other words, asks
company employees if they would condone Jimmy’s treatment as an ethical choice by the com-
pany if it were applied to their own situation.
Peripheral embodiment becomes a catalyst in this situation for other insurance industry
employees to assess their complicity in an industry that depends on excluding people at the
moment of their greatest need for health insurance. The neoliberal normalization of disability
initiates a process of cultural rehabilitation on behalf of the few that inevitably operates at the
expense of the many. Disability becomes an opportunity in antinormative novels of embodi-
ment to contemplate complicity in unethical profiteering practices naturalized within neo-
liberalism as a kind of deterministic survival of the fittest. Without Jimmy’s stroke and Ressler’s
intervention to make the disability event into a political cause, company business would con-
tinue as usual through the unwitting complicity of Jimmy’s fellow laborers in denying con-
sumers access to the very immaterial product (i.e., health insurance) they were presumably in
the business of mass producing. Further, Jimmy’s monosyllabic cracking of the company’s com-
puter code proves advantageous to a public restoration of cause and effect –the profit motive in
health insurance is exposed as a logic of what David Harvey calls “accumulation by disposses-
sion” (137). Profits amass in the insurance industry as the company promotes as many rationales
as possible for reasons why it doesn’t have to provide the product consumers have already paid
for at the moment they attempt to access it.
Bodies falling away from true

Whereas Powers’s Gold Bug Variations explores the diversity of systems at the base of neural
networks and cybernetic chains, Stanley Elkins’s novel The Magic Kingdom (1985) takes on
the task of staging disability itself as an overarching classification beneath which varieties of
alternative embodiments thrive. The unusual assembly of a group of disabled characters –as
opposed to the much more common individuation model involving a singular protagonist
navigating impairments –parallels the surprise one might experience at running across a plur-
ality of disabled people in public. Outside of day-home field trips for residents to the mall one
day a month, special adaptive screenings of movies on specified days at theaters, or the passing
of a short bus with disabled charges, we rarely encounter assemblies of people with disabilities
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in public. Their plurality is hidden as intensely as the individuation of their conditions within
the larger diagnostic rubrics of medicine. Without visible multiplicities of disabled people in
public spaces disability largely remains comprehended as exceptional, rare, isolated, and disas-
trous divergences from able-bodiedness.
At the center of Elkins’s antinormative novel of embodiment is the narrative explication
of a multiplicity of disability perspectives, a plurality that nuances experiences of peripheral
embodiments within the rarity of a multipronged, pluripotent, collective point of view. The
novel sets into motion a neomaterialist impulse that nuances experiences of disability within
the subpopulation of a group of nonaligned, jaded, ethnically and class differentiated, diversely
embodied disabled youth. The Magic Kingdom operationalizes peripheral embodiments as an
opportunity to explore the alternative subjectivities wrought by navigating the world as disabled
people. In the words of Jason Edwards, “What binds a group together as a ‘class,’ and thus
provides it with a capacity for transformative agency, is a set of material practices involved in
everyday life and the experience of lived space” (295). The group of disabled youth in Elkins’s
novel evaluate their lives back in the U.K. as relatively nauseating given their abandonment to
grueling forms of medical experimentation and socially imposed experiences of isolation. At
the same time, the disabled collectivity believes a trip to Disney World is the last thing they need
as a respite from ceaseless regimes of treatment –the two experiences come to seem two sides
of the same neoliberal coin.The defensive comments made by parents to their son Liam, who is
dying from terminal cancer when he critiques the idea of Disney as the destination for his own
memorialization, sum up the anemic deflections offered in the face of the collective skepticism
felt by all of the crip/queer participants:
It isn’t as if this trip were your memorial or anything. Of course not. What, are you
kidding? A clambake in Florida? A binge on the roundabout? A spree at the fun fair?
Your memorial? You think your mum and I would turn something like that into a
great bloody red-letter day or go skylarking about like nits in the pump room? I’m
shocked I am you should think so, well and truly shocked.
(Elkins 95)
A field trip of freaks that feels like a requiem for lives hurried into their status as corpses hardly
qualifies as the fulfillment of this disabled group’s make-a-wish post-adolescent desires. Elkins,
who experienced much of his adult life with multiple sclerosis, opens up the disability experi-
ence as a phantasm of able-bodied projections that infantilize the participants well beyond
childhood. Normative embodiment can offer no viable narrative of disability futurity outside
the parameters of a reduced version of its own homogenizing imaginings.
Yet, over the course of the novel, the group transforms itself through modes of collective
agency based on the insights derived from making active comparisons and contrasts between
divergent disability experiences.Through Elkins’s efforts to imagine alternative worlds in which
they won’t feel so rejected, the motley crew of crip/queer youth scratches beneath the surface
of the Magic Kingdom’s simulacra of supports for disabled visitors. As the able-bodied make-
a-wish team leader, Eddy Bale, realizes immediately upon arriving in Orlando, Florida, in the
midst of a freak snowstorm, the charity trip was ill-conceived at best. If neoliberalism promises
to deliver all bodies into the experience of collectively shared pleasures, then a group of disabled
kids should revel in the opportunity to be like their able-bodied others.Yet, in focusing on the
normative use of Disney as one that would prop up the disabled group’s spirits, Bale misses
the more worthwhile aesthetic aspects in the freakish event –the “accidental, unintentioned
beauty of the storm, by way of the blind blizzard, happened, like paint in milk” (Elkins 93).
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The surprising mixing of “the blind blizzard” that turns Disney into something more akin to
the tundra of northern Europe where they come from results in revelations of an alternative
aesthetic landscape.
The disabled group’s experience in Orlando results in a variety of immersions into unex-
pected scenes of strange beauty that result from nonnormative bodies using the simulated
terrain of Disney World in alternative ways. For instance, Janet Order’s aortic transposition –
the reversal of the usual routes of oxygenated and deoxygenated blood –gives her skin a
decidedly blue cast. In order to better conform (i.e., pass as nondisabled) Janet spends much
of her time thinking up specific cultural activities in which her blue body will fit in more
seamlessly:
Janet Order looked forward to her dreams. In these dreams she’d found an infinite
number of ways in which she was able to take on a sort of protective coloration…
There were thousands of ways to protect herself. She dreamed of blue populations
in blue towns and blue cities. She dreamed of herself cold and at peace in water, her
lips and face blue in the temperature. Or exposed on a beach, blue and drowned. (68)
Janet’s dreams here are not particularly fantastical. She is not transported to fantasy landscapes
yet to be realized unlike the pretension of the amusement park she is about to visit. Instead
she imaginatively travels through a variety of culturally specific ethnic practices that offer the
promise of a more flexible environment of acceptance (“alternative ecologies of belonging” in
Braidotti’s terms 204) beyond the promise of passing –a place where a blue girl can participate
without the need for extraordinary efforts of social concealment within neoliberal inclusionist
practices.
Not only do the disabled protagonists remain actively attentive to local ethnic and racialized
culture alternatives, but they also look longingly to alternatives offered by species other than
humans. In largely eschewing rights- based models of normalization as liberation, Elkins
and other antinormative novelists of embodiment avoid merely documenting moments of
stigmatized embodiment encountering social barriers. Instead, disability provides an opportunity
to explore rejected embodiments as creative deviations in materiality itself. For Elkins, the point
is not to map the insufficiency of normative imaginings about disability (although this happens
throughout the book), but rather to bestow an artful agency demanded by bodies as they navi-
gate environments engineered to accommodate narrow aesthetic and functional norms.
Disney World, with its entirely human-made simulations of idealized landscapes, turns out to
be –in the most Baudrillardian sense –a complete failure of accessibility (Baudrillard 1). After
combating the dispiriting effects of inaccessible rides, condescending staff attitudes, the rudeness
of nondisabled travelers mashing their way through crowds, and encounters with “mute”
characters that turn out to be the neoliberal equivalent to popular consumption’s carpetbaggers,
the queer male nurse, Colin Bible, takes the entire disabled troupe to the afternoon parade
down Main Street USA. In order to better combat the unavailability of Disney World to serve
as a hideout –a place of integration –for those with diverse embodiments. In doing so, Colin
uses the imperfections on display in the assembly of consumptive parade-watchers to alter the
group’s deepening depression over their capacity to transcend the limits of their incapacities.
Rather than bring them to the hardscape of an accepting, diverse environment (a promise
that Disney World makes but completely fails to deliver in its neoliberal transcendence of diver-
sity in normalization), Colin decides to bring the always-already diverse environment to the
attentions of his disabled charges in order to demonstrate that their incapacities have openly
marked the all-too-human topographies of which they are a part:
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“It breaks your heart,” Colin said. “Imperfection everywhere, everywhere My God,
children, we look like we’re dressed for the horseback! (And everywhere, everywhere,
everywhere, there’s this clumsy imbalance.You see these old, sluggish bodies on thin-
looking legs, like folk carrying packages piled too high. Or like birds puffed out,
skewed, out of sorts with their foundations.) And hair. Hair thins, recedes, is gone.
Bodies fall away from true, I don’t know. It’s as if we’ve been nickel-and-dimed by the
elements; by erosion, by wind and water, by the pull of gravity and the oxidation of
the very air.” (223; our italics)
Colin’s perspective, informed by his adoption of the gender-troubling role of queer male
nursemaid to this crip/queer ensemble, gives voice to what might pass as the closest thing to
a thesis of the antinormative novel of embodiment: that is, that “bodies fall away from true.”
The “failure” of normative expectations is “everywhere, everywhere” in that embodiment
makes us radically open to the vicissitudes of vulnerability, the mutating manifestations of
genetic coding errors, the gradual descent into forms of degeneration that prove nothing
more than materiality’s inconstancy –the dynamic drift of ever-present, yet not necessarily
conscious, transformations of corporeality. Within this alternative narrative scheme, norma-
tive embodiment is the ruse of engineering an active repression against the dynamic con-
tingencies of embodiment.
The espousal of this perspective places Colin squarely in a tradition of those who lose hope
in order to gain the wisdom of a “spongy relation to life, culture, knowledge, and pleasure,”
something akin to Halberstam’s notion of the “queer art of failure” (2). Rather than “succeed”
by a false approximation of norms –that which Colin refers to as the artificiality of “the true” –
the queer art of failure “allows us to escape the punishing norms that discipline behavior and
manage human development with the goal of delivering us from unruly childhoods to orderly
and predictable adulthoods” (3). Within this formulation we might understand Colin’s demon-
stration project at the Disney World parade of anomalous characters as an embodiment of those
who fall short of “orderly and predictable adulthoods.” Except the cast of anomalous characters
on display becomes constituted as the audience of imperfect human characters sharing in a
spectacle of difference.
Attention moves, in this context, from the parade of difference represented by freakish car-
toon characters to the imperfections of embodiment represented by onlookers positioned as
normative. The revelation leaves the children’s differences fully intact. Rather than normalizing
their experiences of embodiment in false approximations of how they, through a twist of polit-
ical correctness or inclusionist rhetoric, fit into normative expectations of embodiment, Colin
Bible explains how a lack of fitness is the more epiphanic common denominator of the world.
The antinormative novel of embodiment comes of age as revelatory of alternatives to normative
ways of living based on a more superficial version of diversity.
Like okapi in the jungle

A similar revelation of the incapacities of normative cognition can be found in Mark Haddon’s
The Curious Incident of the Dog in the Night-Time, wherein his protagonist, Christopher, who
could be described as existing on the autistic spectrum, explains his experience of nonnormative
consciousness similarly to that of Mark Schluter who is diagnosed with Capgras syndrome
in Richard Powers’s The Echo Maker as an overattentiveness to small details. According
to Christopher, going into a field of cows results in a level of observation that cannot be
accommodated by normative models of “rational” description:
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there were 31 more things in this list of things I noticed but Siobhan said I didn’t
need to write them all down. And it means that it is very tiring if I am in a new
place because I see all these things, and if someone asked me afterward what the cows
looked like, I could ask which one. (142)
Like Powers’s antinormative characterization strategy, Haddon’s formulation of alternative cog-

nition patterns for those on the autistic spectrum reveals a universe of “excessive diversity,” if it
is possible to use the phrase in a more productive sense, one where loss is revealed as residing in
those clinging to reductivist principles of normative consciousness, a form of knowing perhaps
best described as ways of not knowing. At one key point in the novel Christopher diagnoses
this problem in those with normative cognition capacities as “glancing”: “But most people are
lazy. They never look at everything. They do what is called glancing, which is the same word
for bumping off something and carrying on in almost the same direction, e.g., when a snooker
ball glances off another snooker ball. And the information in their head is really simple” (140).
So, in one respect this attention to an abundance of details marks one aspect of the capacities
of incapacity involved in autistic cognition; in another respect the need to reduce one’s suscep-
tibility to overstimulating situations also fuels ways to imagine alternative disability universes.
Myriad examples of locating more hospitable ecologies in order to wall off excess detail
occur throughout the novel, such as when Christopher puts his hands over his ears, closes his
eyes, and rolls forward until hunched up with his forehead pressed onto the grass when phys-
ically accosted by another (4); or when he crawls between the wall of the shed, the fence, and
the rainwater tub and covers himself with a fertilizer sack to hide after discovering his father is
the murderer of the neighbor’s dog, Wellington (127); or when he escapes from a policeman by
stowing his body on a luggage shelf during a train ride to London to live with his mother.These
activities of shut down, stimming, and self-isolation in tiny places demonstrate the extent to
which Christopher actively shrinks the circumference of his interactions with humans in order
to protect himself from normate onslaughts. Further, Christopher pursues a variety of cross-
species identifications in his pursuit of alternative ecologies within which he might flourish in
his crip/queer capacities of being.
Throughout the novel he likens his existence to other animals that enjoy being alone, iden-
tifying asociality as a viable option for one who experiences interactions with others as a bar-
rier: “And eventually there is no one left in the world except people who don’t look at other
people’s faces… .And they like being on their own and I hardly ever see them because they are
like okapi in the jungle in the Congo, which are a kind of antelope and very shy and rare” (198–
99). The queer/crip poet Eli Clare (a transgender man with cerebral palsy) declares similarly in
the film, Self Preservation: The Art of Riva Lehrer (2005): “I don’t like being around people. I’ve
always led a somewhat willful existence where being alone in Nature is preferable to interacting
with other humans.” Such expressions of alternative pleasures found in isolation from humans
who compose an inaccessible space where interaction with others is the barrier expose ways of
being that would find inclusionism a source of oppression rather than liberation.
The capacities of incapacity

The antinormative novel of embodiment privileges disability as a failure of realizing expectations
of normalcy, a source of innovation that runs consciously counter to sociality’s insistence on the
all-encompassing power of stigmatizing cultural inscriptions.To be clear, this alternative approach
to disability is not a story of overcoming where the limited body exceeds its social expectations
in an approximation of normative modes of relating to the world; nor is its representational
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David T. Mitchell
mechanism one that uses disability as a metaphor for ailments that prove social rather than
bodily (as does the story of female hysteria, for instance, in Charlotte Perkins Gilman’s “The
Yellow Wall-Paper”); and, perhaps most liberational of all, these are not inclusionist stories of
the ways in which disabled people are rescued by their similarity to some abstract majority
of others. The antinormative novel of embodiment surfaces with a version of nonnormative
materiality that proves more innovative for its truthfulness to the “imperfections” (the coding
errors and adaptive capabilities) of organicity than its more culturally performative normative
cousins. In turn, these works also locate an overlooked creativity –the skilled labor –required
of living with disabilities as the realization of forms of subjectivity that expand alternatives for
living in the world.
Whereas social constructionist-based theories suppress the innovation supplied by corpor-
eality in the name of antiessentialism, antinormative novels of embodiment revel in the degree
to which fiction can deploy disability to demonstrate the insufficiency of social investments in
normative stasis –a defining feature of a desire for sameness residing at the foundation of neo-
liberal social domains created by inclusionist practices. The capacity of incapacity to which we
are referring as an alternative, corporeal-based methodology turns for its insight on a form of
biological materialism reinterpreted as a critique of pathology’s normative referencing frame.
This immanent materialist approach depends upon reimagining life as life, as that which can
never be stable, that which must undergo change both in itself, at the level of individuals, and
over generations, at the level of species or populations. Elizabeth Grosz’s poetic explication of
alternative materialities might well be applied to the disabled lives occupying center stage in
antinormative novels of embodiment:
Matter is organized differently in its inorganic and organic forms; this organization is
dependent on the degree of indeterminacy, the degree of freedom, that life exhibits
relative to the inertia of matter, the capacity that all forms of life, in varying degrees,
have to introduce something new. This something new, a new action, a new use of
matter, a new arrangement or organization, is brought into existence not through
complete immersion in matter but through the creation of a distance that enables
matter to be obscured, to be cast in a new light, or rather, to have many of its features
cast into shadow. (167)
We end by offering this explanation of Grosz’s paraphrase of Darwin’s evolutionary method as a

means for understanding the radical literary history of embodiment offered up by antinormative
novels of embodiment. As an historical outcropping of narrative experiments, the antinormative
novel of embodiment explicitly challenges neoliberalism’s insufficient embrace of disability as
diversity. The antinormative novel of embodiment emerges in a post-Fordist fetishistic expan-
sion of the marketing of difference made available by neoliberal biopolitics extant in late liber-
alism. Such strategies of inclusion effectively undermine the material alternatives that queer and
disabled bodies actually provide.The antinormative novel of embodiment’s most radical critique
develops in an interim space, that which queer narrative theorist Ross Chambers refers to as
oppositional narrative’s tactical exploitation of disability’s revelatory capacity to reveal incapacity
as a viable alternative to the reification of the value of normativity.
Works cited
Baudrillard, Jean. “Disneyworld Company.” Translated by Francois Devrix. Liberation. March 4,1996.
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Braidotti, Rosi. “The Politics of Life Itself and New Ways of Dying.” D. Coole & S. Frost (eds.), The New
Materialism: Ontology, Agency, Politics. Durham: Duke University Press, 2010: 201–18.
Browning, Robert. The Pied Piper of Hamlin. Alcester: Pook Press, 2013.
Chambers, Ross. Room for Maneuver: Reading (the) Oppositional (in) Narrative. Chicago: University of
Darwin, Charles. The Origins of the Species By Means of Natural Selection, or the Preservation of Favoured Races
in the Struggle for Life. London: Murray, 1859.
Edwards, Jason. “The Materialism of Historical Materialism.” D. Coole & S. Frost (eds.), The New
Materialism: Ontology, Agency, Politics. Durham: Duke University Press, 2010: 281–98.
Elkins, Stanley. The Magic Kingdom. Normal: Dalkey Archive Press, 2000.
Floyd, Kevin. The Reification of Desire: Toward a Queer Marxism. Minneapolis: University of Minnesota
Press, 2009.
Foucault, Michel. The History of Madness. Translated by Jonathan Murphy. New York: Routledge, 2006.
Grosz, Elizabeth. The Nick of Time: Politics, Evolution, and the Untimely. Durham: Duke University Press, 2004.
Haddon, Mark. The Curious Incident of the Dog in the Night-Time. New York: Vintage Contemporaries, 2004.
Halberstam, Jack. The Queer Art of Failure (A John Hope Franklin Center Book). Durham: Duke University
Press, 2011.
Harvey, David. The New Imperialism (Clarendon Lectures in Geography and Environmental Science).
Oxford: Oxford University Press, 2003.
Kruks, Sonia.“Engaging Discrepant Materialisms.” D. Coole & S. Frost (eds.). The New Materialism: Ontology,
Agency, Politics. Durham: Duke University Press, 2010: 258–80.
Lorenzo’s Oil. Directed by George Miller. NBC Universal, 1993. 135 mins.
Mitchell, David T. & Sharon L. Snyder. Narrative Prosthesis: Disability and the Dependencies of Discourse. Ann
Powers, Richard. The Echo Maker. New York: Picador, 2007.
———. The Gold Bug Variations. New York: Harper Perennial, 1992.
Rich, Adrienne,“Pierot Le Fou,” Collected Poems, 1950–2012. New York: W.W. Norton & Company, 2016.
Self Preservation: The Art of Riva Lehrer. Directed by Sharon L. Snyder. Brace Yourselves Productions, 2005.
32 mins.
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PART III
Poetry
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15
POET AND BEGGAR
Edmund White’s Blindness
Vanessa Warne
When British railway worker Edmund H. White became blind in midlife in the 1850s, he
needed a new way to support himself and his family. Having lost his railway job when he lost
his sight, White considered becoming a public lecturer. He decided instead to become a poet,
authoring a series of long poems that he published with the help of supporters who prepaid for
copies of his books. His 1856 Blindness, A Discursive Poem in Five Cantos, written four years after
he became blind, was published with the help of 126 subscribers. In it, White explores topics of
general interest, such as abolition, the whaling industry and the reign of Queen Victoria. He also
shares detailed accounts of his experience of blindness, including the poverty that threatened his
family following his vision loss.
This chapter takes up White’s Blindness in order to explore the role of poetry in a working-
class man’s experience of acquired visual disability. I begin by exploring White’s negative portrayal
of blindness as a personal tragedy. I move next to the publication of his poetry by subscription, a
method nineteenth-century authors with disabilities regularly employed. I follow with an ana-
lysis of White’s interweaving of the story of his disability with an homage to celebrated blind
poet John Milton’s Paradise Lost (1674). I argue that White’s poem is representative of blind,
working-class authors’ double identification with two culturally influential blind personas: on
one hand, the blind poet understood as compensated for blindness by literary talent, and, on
the other, the blind beggar who, excluded from paid employment by societal attitudes toward
disability, was obliged to beg for a living.
Depicting visual disability

In the five cantos of Blindness,White describes his life as a blind person and outlines unsuccessful
attempts he made to secure charitable support for himself and his family prior to publishing his
poem. Printed in London, where White lived, the book, which is 131 pages long, sold for half
a crown. Written in heroic couplets, the poem at the book’s center is both prefaced by a prose
introduction and explicated by seventeen pages of endnotes. In it, White identifies himself as a
married man and a father; he also names people who have either aided him in adjusting to life
with a visual disability or failed to respond to appeals he made for help. He consistently draws
connections between his experience of acquired blindness and the challenges faced by other
blind people, especially working-class blind people, some of whom are, White laments, obliged
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to beg on the streets because they are excluded from employment and neither private charity
nor state supports supply their basic needs.
White was by no means alone in choosing poetry as a medium for exploring the experi-
ence of acquired disability. In his long poem The Genius of the Blind, published three years after
Blindness, White praises influential predecessors such as Thomas Blacklock (1721–91), a Scottish
blind person and divinity scholar who published a collection of poems in 1756 by subscription.
Blacklock, who did not write exclusively on the theme of blindness, did use poetry to share
incidents in his life related to his blindness, such as a time he narrowly avoided falling into a well
while on a walk (Blacklock 153). In The Genius of the Blind, White also praises less widely read
blind poets, namely Edward Rushton, Turlagh Carolan, Dennis Hampson and Anna Williams.
These authors were for White, as for other blind people, valued representatives of blind people’s
poetic achievement, part of a long line of respected blind poets that, for White, stretched back
to Homer, included the fictional Ossian, and was best represented by Milton.
Though blind authors were figures of particular interest to blind people with literary aspirations,
sighted people, both readers and authors, were also interested in blindness. The nineteenth-
century history of depictions of blindness in American literary culture has been thoroughly
explored by Mary Klages in her seminal study Woeful Afflictions: Disability and Sentimentality in
Victorian America (1999). More recent is Heather Tilley’s Blindness and Writing: From Wordsworth
to Gissing (2018), which examines the British history of the literary depiction of blindness, with
attention to both blind authors, such as Frances Browne, and sighted authors, including Charles
Dickens and Wilkie Collins. Tilley includes White in her study of blind authors, noting the
economic forces that prompted White to publish poetry and proposing that “[h]‌is texts grapple
with the gap between experience of vision as seeing things in the present out there, and visual
memory as a way of newly seeing things” (108).
Whereas personal experience of blindness shapes White’s poetry, sighted authors imagine
blindness and then assign the experience to the characters they depict. As Mary Wilson
Carpenter has noted,“blinding the hero” (52) is a plot device employed by prominent Victorian
authors such as Charlotte Brontë, whose novel Jane Eyre (1847) features both the blinding and
maiming of its male protagonist Rochester. Rochester’s injuries are acquired in the destruc-
tion of his home and function as humbling punishments that prepare him for marriage to the
novel’s eponymous heroine. As Carpenter and others note, sighted author Elizabeth Barrett
Browning’s verse novel Aurora Leigh (1856), published in the same year as White’s Blindness,
also portrays the vision loss of a male protagonist. Not unlike Brontë’s Rochester, Romney
Leigh becomes blind as a result of injuries acquired during the destruction of his ancestral
home, his disability humbling him and preparing the way for his marriage to Aurora. As Julia
Miele Rodas has demonstrated, Barrett Browning’s portrayal of Romney as a blind person has
important connections to her real-world friendship with Hugh Stuart Boyd, a scholar, poet
and blind person who acted as Barrett Browning’s tutor in Greek. Analyzing both Barrett
Browning’s correspondence and poems she wrote about Boyd and about blindness, Rodas
links Barrett Browning’s attraction to Boyd with her perception of him as “pitiably blind”
(Rodas 107).
As Tilley shows in Blindness and Writing (2019), poets with complicated personal relationships
to sight and blindness, such as William Wordsworth, also contributed to the literary conversation
on blindness. Attentive to both Wordsworth’s literary depiction of blind people and his experi-
ence of chronic trachoma, Tilley has explored “the ways in which episodic visual impairment
disrupted his relationship to literature” (41). While Wordsworth’s fluctuating relationship to the
identity of blind poet is quite unique, his depiction of blind people in poetry is representative
of his era. His commentary on blindness includes an influential depiction of a blind beggar in
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Poet and beggar
The Prelude (1805, 1850), a figure to whom nineteenth-century poets repeatedly turned for
an emotionally and philosophically engaging subject. As I have noted elsewhere, Wordsworth’s
portrait of a blind beggar in The Prelude identifies blindness with immobility and passivity as
well as with sensory difference (Warne, Nineteenth-Century Disability, The Prelude). Suggesting
the resilience of interest in this figure, at the end of the century, Arthur Symons, a sighted poet,
created a comparable poetic portrait of an isolated blind man in a busy urban street, his hat held
out to receive coins. His 1892 sonnet “The Blind Beggar” emphasizes the social isolation of the
blind beggar and imagines his sensory difference as catastrophic. Indeed, Symons goes so far as
to compare a blind person to a “dead man in his shroud” (36), an image that is central to both
Symons’ identification of blindness with extreme deprivation and his depiction of blindness as
a living death (Warne, Nineteenth-Century Disability, “The Blind Beggar”).
White, who experiences his blindness as a calamity, depicts visual disability in ways that are
not dissimilar to Wordsworth and Symons, sighted people whose portraits of blindness have
been much more widely read and studied than White’s. Indeed, White’s descriptions of his
disability in Blindness are wholly consistent with dominant and deeply problematic cultural
identifications of blindness with a living death and with physical pain. Following convention,
White uses images of physical suffering and severe sensory deprivation, including live burial,
to describe his life. He adds helplessness, poverty and social isolation to this characterization,
aspects of the nineteenth-century cultural perception and depiction of visual disability apparent
in the period’s literature, medicine and visual art (Warne, “Blindness”). In the third canto of
the poem, for example, White describes his blindness as a “dismal darkness” (33) and recalls
moments when:
…vainly have I strain’d

My aching eyeballs o’er the pathless deep
And felt an inward shudder o’er me creep,
At my lone helplessness; such is the night
That oft succeeds a day of dazzling light,
And such the night, whose dark and awful gloom
Attends the blind man in his living tomb. (33–4)
White repeats his equation of visual disability with death later in the poem in a lament for the
visual beauty of the natural world:
No more my eyes may view the vernal glade,

Or spreading acres gorgeously array’d
In summer vestments…
No more when starry night her mantle spreads
Beneath the Heav’ns, and all around her sheds
From peopled planets in the realms above,
A soft enchanting radiance of that love
Jehovah bears to man, may I behold;
For all to me is cheerless, dark, and cold
As the abode of death. (64)
White, for whom blindness is unambiguously tragic, draws here and elsewhere on culturally
established identifications of blindness, if not with death, at least with interment. Using similar
images to discuss the experiences of other blind people, White proposes in his Introduction
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that “in all parts of the united Empire, blindness falls like a dark funeral pall, enshrouding in its
gigantic folds all the beauties and glories of Creation from the eyes of its victims, making the
strong man and the beautiful woman alike, poor dependants on their more fortunate fellow
creatures” (xvi). In the poem proper, White uses a personified figure of fortune to explain how
his life has been changed by vision loss. He remembers how: “fortune’s frown /Fell ruthlessly
upon me, bore me down, /And with a sudden blow, hurled at my head /Perpetual darkness,
and light vanished” (61). This image of assault encapsulates White’s feelings of powerlessness in
relation to his loss of sight; it is also representative of his use of the language of bodily injury to
describe a disability that did not, in fact, result from an injury to his body.
While workplace accidents were a common cause of blindness in nineteenth-century Britain,
White attributes his blindness to his witnessing of an accident in which he was not physically
harmed. While working as a guard at Teignmouth Station, he tried to protect a woman named
Ellis from injury by stopping her as she attempted to board a moving train. He recalls how, des-
pite his efforts, “her cloak or foot became entangled in the carriage wheel, and she was whirled
with frightful rapidity from my grasp, and in a moment she was dead, and her brains scattered
over the metals” (109). White chooses to apostrophize Ellis at several points in his poem as, for
example, when he describes her attempt to re-board her train:
…even now
I see thee stand before me, view thy brow,
Mark every feature of thy lovely face,
As smilingly, thou with the train did’st race
On that sad day when warning was in vain
To check thy footstep, or thee to restrain. (62)
White expresses his sympathy for Ellis when he describes a brief period of blindness that he
experienced at the scene of the accident: “I sprang up and rushed to the edge of the platform,
but the shock had proved too much for me, and I was blind. Gradually, however, my sight
returned (but never so strong as before) and I beheld the wheel resting on the poor girl’s neck”
(109). White will attribute his permanent blindness both to the initial shock of witnessing this
death and to the cumulative effect of his visual memories of it. He explains, “[t]‌his dreadful
occurrence had such a severe effect on me that for months afterwards, the smiling face of that
poor girl by day and night haunted me; […] after several months’ bodily anguish and mental
anxiety […] without the slightest pain my sight failed me” (109). White adds in a note that he
consulted medical professionals who agreed his blindness originated in damage done to his
optic nerve by witnessing Ellis’ death, damage White understands as a kind of paralysis.
While the actual cause of White’s blindness may not have been known to White and cannot
be known to us, his perception of a causal link between visual trauma and vision loss reveals his
understanding of sight as a sense that is vulnerable not only to disease and physical injury but
also to the trauma of witnessing. When White shares painful visual memories of Ellis’s death, he
does so partly to express his sympathy for her and partly to elicit sympathy for himself, both for
his vision loss and for the emotional pain caused by the visual memories that haunt him. This
is the case when White contrasts Ellis’ sudden death with his own experience of blindness as a
living death:
Again I view thee as the carriage wheel

Upon thy neck was pressing, made me feel
A shudd’ring sensation o’er me creep,
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Poet and beggar
At thy sad fate; but thou in peace doth sleep

Within the narrow confines of the grave,
While I in darkness a cold world must brave,
No more may I behold the glorious light
Of bright aurora, or the queen of night,
Whose silver beams upon the waters lie,
Or those bright stars that gem the darken’d sky. (62)
After comparing Ellis’ peaceful sleep with his prolonged suffering, White turns to his loss of a
job that he enjoyed, repeating the lament “No more” when he reflects how: “No more may
I within the railway train, /Swift as an eagle dart o’er hill and plain, /Or through the bowels of
the cavern’d rock /Speed like the wind” (63). Several pages later, White apostrophizes Ellis on
the topic of the financial hardship he endures in the wake of her death: “Such Ellis is the fate,
that o’er me hangs, /Increased in anguish by the blighting fangs of poverty /Who feels a brand,
like Cain, upon his brow” (67). White documents the facts of Ellis’ tragic death with empathy
but also with his own losses in mind: his loss of vision and the end of his employment with the
railway. As the next section in this chapter proposes, the financial implications of his unemploy-
ment, for himself and his family, shape White’s poem.
The blind beggar
Writing in 1846, an anonymous contributor to the London Journal complained about rhymes
written on the pavement by beggars, dismissing them as hackneyed. The contributor gives
as an example the work of a disabled sailor who sits and begs beside a chalked couplet that
reads: “The ocean I’ve crossed /My limb I have lost” (“On Beggars” 294). The patter of
street beggars, spoken equivalents of chalked phrase, could also take the form of a recited
poem that, like a written note or placard displayed by a disabled person, shared information
about an individual’s disability, such as whether the disability was congenital or had been
caused by illness or an accident. As Martha Stoddard Holmes has shown, journalist Henry
Mayhew’s interviews with members of London’s working-class blind population for his four-
volume study London Labour and the London Poor (1851–61) include references to blind people’s
use of poetry to make a living in the streets. Holmes notes, for example, a rhymed lament
recited by a blind boot-lace seller in which the seller describes himself as a prisoner “bound
in dismal darkness” (“Working” 40). Holmes describes this lament as a “performance of
affliction, presented in the exact terms that will elicit sympathy without suspicion” (“Working”
41). According to Holmes, the evidence of Mayhew’s interviews with disabled street sellers
and beggars reveals that some disabled people worked strategically “within the emotional
economy of disability” and put mainstream views about disability and disabled people “to
work” (“Working” 42).Thus, for Holmes, a statement in verse like the one shared by the boot-
lace seller is an example of the ways in which narratives created by Victorians with disabilities
not only record the experiences of disabled people but also reveal how these experiences
are shaped by the values of an able-bodied majority. In her influential book-length study of
the cultural history of Victorian disability, Fictions of Affliction (2004), Holmes explores a wide
range of self-representations by people with disabilities in Victorian culture, from street patter
to published memoirs. She concludes that nineteenth-century disabled people’s “narratives of
self were inevitably fashioned with reference to the melodramatic conventions that permeated
cultural constructions of disability” (Fictions 133).
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White’s Blindness conforms closely to Holmes’ characterization of the self-representation of

people with disabilities in Victorian Britain. What attention to subscription, the mechanism of
its publication, can add to Holmes’ analysis is an awareness of the importance of subscription
to blind people who published autobiographical writing. Though the practice of publishing by
subscription was not exclusive either to the nineteenth century or to authors with disabilities,
the importance of this practice to people with disabilities is suggested by its use by White’s role
model, blind poet Thomas Blacklock, who both published Poems by Mr. Thomas Blacklock with
the help of more than 300 subscribers and dedicated the first seven pages of his book to listing
their names (1–7).
A forerunner of contemporary crowdfunding, subscription was established as a practice in
the seventeenth century. It developed to support the publication of books whose features, such
as expensive illustrations, made them unusually costly to print. In order to limit the financial
risk to printers, authors solicited prospective supporters to prepay for an as-yet unpublished
book or pamphlet. Typically, subscribers responded to a letter from the author or to a personal
visit during which an author shared his or her plan for a book and also, in some cases, an out-
line or sample of their writing. Subscribers could be approached by the author directly or by
a friend acting on his or her behalf. A subscriber’s financial support secured her or him a copy
of the book or pamphlet once published. Support was also rewarded with the circulation of a
subscriber’s name –initially on a handwritten list circulated to prospective subscribers and later
on a finalized version of that list, printed and bound in the book. These lists typically include
subscribers’ addresses and the number of copies of the publication they had ordered.
Press coverage of this practice suggests that, in the Victorian era, subscribing for the publi-
cation of a book was understood as a charitable act and, as with other forms of solicitation for
charity, this practice was viewed suspiciously if not critically by some observers. To return to
Mayhew, the fourth volume of Mayhew’s London Labour and the London Poor, published in 1862,
includes an account of a Mr. Driver, a person who solicits subscriptions for literary works he fails
to publish. Driver has, the author of the account proposes, “lived upon this as yet unpublished
song, and that unfinished political novel, for ten years or more” (Mayhew 409). The author
explains how Driver approached him to subscribe for the publication of a song dedicated to
Queen Victoria, soon to be published, without realizing his target had already “subscribed for
this very song eight years previously” (409). Mr. Driver promises prompt publication but the
skeptical subscriber predicts the promised song “will yet be in the womb of the press when
the crack of doom comes” (410). Driver, it should be noted, is not identified by his critic as a
disabled person, only as an unsuccessful author who exploits the goodwill and trust of others.
The willingness of subscribers to invest in a project was presumably shaped by their own
interests as well as their assessment of the soliciting author. Perhaps some subscribers were
genuinely interested in a proposed book; perhaps some were motivated by the prospect of
seeing their own name in print in association with a project that signaled their altruism. Some
commentators admit they subscribed to a book simply to put an end to a needy author’s dogged
solicitation. The anonymous author of “On Beggars,” quoted above, takes a broad and very
negative survey of contemporary begging practices. Though he states his particular dislike for
“travelling suitors for subscribers to books,” describing them as “most troublesome” (295), he
admits to paying a subscription of “seven and sixpence” (295) to a persistent author for a book
on statistics he has no plans to read.
While the association of a book’s publication with charitable giving was precisely what made
the practice of publishing by subscription unpalatable to authors who wished to be perceived
as capable participants in a competitive literary marketplace, publication by subscription was
an attractive option for literate people who, through disability, illness, or other circumstances,
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experienced poverty. This method of publication was, after all, a more socially respectable and
lucrative undertaking than street begging. Part of the appeal of the practice, both for authors and
subscribers, was that additional copies, beyond those promised to subscribers, could be printed
and sold by authors or their friends, sometimes through social networks but often door-to-door.
Disabled authors who published their books by subscription exchanged the story of their
disability for financial support in ways that closely parallel but are distinct from begging. White
both begins Blindness by addressing “the Subscribers” (vii) and closes his book with a list of their
names. As White explains in his poems and their prefaces, he turned to poetry out of finan-
cial desperation, opting to publish books of poetry instead of begging in the street. Like street
beggars, however, White shares the story of the origin of his blindness, characterizes blindness
as a tragedy and very directly solicits both the sympathy and the charitable support of sighted
people. Emphasizing the role played by financial need in his choice to become a writer, White
insists on his lack of literary ambition, sharing with his readers the financial, rather than cre-
ative, impetus for his poem. In the first sentence of his Introduction, he explains: “I have been
actuated by no mere love of literary fame in placing the composition before [readers]” (vii).
Though this could be read as a standard expression of authorial modesty,White goes on to state
directly that what he seeks, in writing and publishing this poem, is an income, his goal being
to write poetry that can “assist in providing the common necessaries of life for a young and
numerous family” (viii).White notes both his own family’s difficult circumstances and those of a
larger community of working-class people similarly impoverished by blindness and their related
exclusion from paid work. He hopes that his poem will “attract the attention of the benevolent
to the forlorn and destitute condition of many thousands of my poor afflicted brethren” (viii).
White’s decision to publish by subscription follows failure in another, arguably related, genre.
White explains in Blindness that, early in his life as a blind person, he wrote to his former
employers at the Great Western Railway Company to request financial help. According to
White, they answered his letter with what they deliberately termed “a donation” (110) of ten
pounds, a word choice signaling their belief that they were not obliged to compensate White
for his blindness or his loss of employment. In their reply, they offered a second gift of the same
amount contingent on White agreeing to never approach the Company again with a request for
financial aid. Disappointed and offended, White refused, preferring to publicize the Company’s
uncharitable response. White also discusses in his poem a letter from an aristocratic woman
who declined a request from him for aid. White had, in his time as a railway worker, assisted an
upper-class passenger, Lord John Russell, rescuing him from a fate similar to that of Ellis. White
wrote to Lady Russell, reminding her of his service to “Lord John” (107) and sharing news of
his blindness and unemployment. She declined to assist him, explaining she already had too
many charitable commitments, a rejection of his request that White quotes in Blindness (108).
White’s decision to both name an upper-class woman who refused him aid and publicize her
lack of generosity is a striking measure of the depth of his financial need and frustration.
In accounts of his failure to secure support from Lady Russell and the Railway Company,
White identifies himself as an unsuccessful author of begging letters, a genre of letter viewed
unsympathetically, if not suspiciously, by many of White’s contemporaries. Begging letters,
addressed to people who may or may not be personally known to the author, appealed for
money or for other forms of support, such as employment or help with a particular need, for
instance, the purchase of clothing required to begin a new job. These letters typically detail the
suffering of the author, outlining the injuries, illnesses or other hardships that pushed the author
into poverty. Widespread resentment of these letters and suspicion regarding the claims their
writers made is suggested by the creation in 1869 of the Charity Organisation Society, a group
dedicated to investigating the truth of claims made by begging-letter writers (Mowat). Negative
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perspectives on these letters are articulated by Charles Dickens in his Household Words essay “The
Begging-Letter Writer” (1850), in which he goes so far as to call authors of these letters “scum
of the earth” (172). Given the existence of views like these one, it is perhaps not surprising that
White fails as a begging-letter writer. Significantly, White’s discussion of his poverty and the
origin story of his disability link his poem very closely with the begging-letter genre. Indeed,
the poem can be read as a kind of open begging letter in verse, one written and published for
general circulation.
White’s Blindness suggests that publication by subscription, though viewed suspiciously by
a literary mainstream, was a valued means of support for working-class disabled people with
limited options. Whereas White failed to secure aid by writing begging letters, he was able to
secure the support of more than 100 subscribers to Blindness, a number of whom subscribed
for multiple copies. White would go on to use the same method to publish at least one other
long poem, The Genius of the Blind, in that case with the help of 184 subscribers, a good number
of whom who had subscribed for his earlier poem. Though poetry published by subscription
allowed White to earn a subsistence income without begging in the streets, it is worth noting
that both the solicitation of subscriptions and his use of verse to share the story of his disability
connect his work with the work of street beggars who earned a living by sharing accounts of
their disability in public spaces to solicit spare change.
The blind poet
The celebrated Renaissance poet John Milton was for White, as he was for many blind people in
the nineteenth century, an influential model of blind people’s creative potential and achievement.
Finding in the literary record evidence of the special poetic achievement of blind authors,
White also finds inspiration to represent his own blindness and to endure criticism for doing so:
Orpheus like, I would in mournful strain,

Pour forth a Blind Man’s sorrows, nor complain
If, like the spirit that inspires my muse,
I meet neglect, contempt, aye, and abuse.
The Blind Man’s sorrows: he who would portray
The Blind Man’s sorrows, in a mournful lay,
Must like great Milton, or the Blind Greek Sage,
Illustrious Homer, with the foe engage. (2)
Here, White shares his perception of the blind poet as uniquely gifted but also as likely to
be dismissed by a representative critic, a “foe,” for writing about the experience of blindness,
an experience defined for White by “sorrows.” Though White names and eulogizes other real
or imagined blind authors of epic poems, including, predictably, Homer and Ossian, Milton
is his principal exemplar of a poetically gifted blind person. Milton’s name and the fact of
his blindness feature in the first line of the first canto of Blindness, where White recalls how
“Milton in the awful gloom /Of darkness, deep, impervious as the tomb, /With mental eyes,
surveyed the aerial height, /Whereon belligerent Angels armed to fight” (1). Replacing images
of darkness with images of illumination, the second stanza of the poem shares White’s hope that
“a gleam of Milton’s classic fire” (2) will inspire his poem “with radiant thought” (2).White also
signals his admiration for Milton through his selection of poetic devices. While White’s poem
is written in heroic couplets, not in blank verse, and is divided into cantos, rather than books,
White makes frequent use of both epic similes and invocations.
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Milton’s influence on White informs both the style and the content of Blindness. White’s
accounts of the death of Ellis, of the hardships of blindness and of the poverty of working-class
blind people coexist with long passages in which White narrates the fall of Adam and Eve.
Identifying himself as the muse’s “blind votary,”White depicts Eve’s creation and explores “[t]‌he
hapless fate” that befell Adam, who White described as “luckless” (10). The poem’s defining
feature is arguably its oscillation between, on the one hand, the retelling of White’s personal
narrative of disability, and, on the other, the story of Eden. Transitions between the two modes
of White’s poem, the personal and the epic, are exemplified in the second canto when, after
exploring at length his feelings of social isolation, White announces, mid-stanza, a return to
Adam’s story:
…I am blind, and then
I am deserted by my fellow men;
Cast off or doom’d to be laid on the shelf,
Like threadbare garment, or like hoarded pelf,
That some rich miser, in his lust for gold,
Hides in some snug retreat; and when grown old
Brought forth perchance to be recast, or flung,
Like filthy carrion or like rotten dung
Into some hole or corner call’d a grave;
Such were my fate, but that such fate I brave.
But to return to Adam, who, at rest,
Dream’d of wild rapturous joys; while from his breast,
Jehovah took a rib, made Eve his bride,
And laid her, calmly sleeping, by his side. (20)
While this and similar transitions may feel abrupt, the poem is characterized by a tonal con-
tinuity,White’s mournful reflections on his blindness complementing his equally elegiac account
of the loss of Eden.The fact that his story –of involvement in a fatal accident, of disability and of
poverty –is told alongside the biblical narrative, wedged between epic content, arguably tells the
reader as much about White as his direct reflections on his life, the very act of combining seem-
ingly incongruent material revealing the complexity of his social position as a newly disabled
person who is well educated but unemployed.
While both White’s acquired blindness and his decision to tell the story of Adam and Eve
in conjunction with his personal story of disability very clearly connect his project with
Milton’s, other points of connection exist. Gesturing toward a biographical, rather than the-
matic or formal, connection between himself and Milton, White laments the difficulty of
dictating Blindness. Though he does not name Milton in this account of his writing process,
White evokes Milton’s dependence on two of his three daughters to act as amanuenses, a
feature of both written and visual depictions of Milton’s blindness in circulation in White’s
lifetime:
…afflicted with total blindness, and not having the pecuniary means of employing a
competent amanuensis, I was under the necessity of availing myself of such assistance
as Providence had placed within my reach. The composition of this little volume has
therefore been to me a long, tedious, and protracted undertaking, having to instruct
the writer, one of my daughters, who is only eleven years of age, how to spell almost
every word as I dictated it, when it was afterwards corrected and copied by another of
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my daughters, thirteen years of age, in those hours that should have been devoted to
rest, after the tedium of a long day’s occupation. (ix)
White’s frustration with his dependence on his children to serve as amanuenses was, it seems,
increased by his financial dependence on a child who worked long hours to support the family
financially. Though connected to Milton by his dictation to his daughters, White’s reference to
his older daughter’s workday makes clear that his life circumstances differ in important ways
from those of his role model.
Motivated by admiration for Milton, but also by financial distress, White’s most notable
references to Milton might well be his use of Milton’s name in a proposal White introduces
in the opening pages of his book and elaborates in the poem proper. Proposing a solution to
the problem of blind people’s poverty, White recommends the creation of a new charity to
support working-class blind people, a charity that will, he hopes, “last, like Milton’s immortal
work, ‘Paradise Lost,’ throughout all time” and which, he argues, should be named after the poet
the “Royal Miltonian Institution for the relief of the blind” (116). White worries his proposal
“may appear strange and startling” (xix) or even that it will seem “at first sight, a wild visionary
and Utopian scheme, emanating from the brains of a maniac” (xvii). It is, without question, an
ambitious plan which calls for the creation of a national institution, headed by a leading phil-
anthropist who would, in cooperation with Queen Victoria and the leaders of the Church,
institute an annual sermon for blind people. This institution would gather and distribute funds
raised by the sermon, which would be delivered in all churches in Britain on a designated
Sunday every year. Significantly, in the poem, White has the figure of Britannia, moved by the
suffering of Britain’s population of blind people, voice this proposal. White portrays Britannia
speaking at a council gathered to hear the plan where, “with a cheek as pale /And death-like
as a spectre, [she] did bewail, /In tones of melting tenderness, /The fate of hapless mortals
blind and desolate” (89). White adds in an explanatory note that this initiative would benefit
both unemployed blind people and the communities in which they live as “our streets [will] no
longer be disgraced by the unseemly sight of poor helpless men or women led by dogs, begging
their bread” (xix).
When White, a railway worker turned poet, proposes a new charity to be named after John
Milton as a solution to both his own poverty and the social problem of blind people’s begging,
he demonstrates the complexity of his attitudes toward visual disability. An admirer of blind
poets, White, a newly blind person, is deeply troubled by the exclusion of blind people from
paid work; he is also troubled by the public presence of blind beggars. Appealing to the patri-
otism of his readers, White regrets that England is a country where “our towns and cities [are]
all dispread /With poor blind mendicants, whose daily bread, /The dole of charity at times
supplies; /At others, all unheeded are their sighs” (86). Having introduced the problem of
the blind beggar in visual language, as the “unseemly sight of poor helpless men or women,”
White wonders: “shall the blind man by a dog be led, /For ever through our streets to beg his
bread” (87).
Importantly,White contextualizes this portrait of begging with an examination of the limited
charitable support available to blind people. He praises a few charitable groups but harshly
criticizes others for poor financial management and for overly strict or narrow eligibility cri-
teria. For example, White shares excerpts from the annual report for 1854 of the Indigent Blind
Visiting Society, a London-based organization whose budget he scrutinizes in order to show
that the organization has “frittered away” (xii) three quarters of its annual budget, this at a time
when more than 4,000 blind people were, White estimates, living in desperate circumstances
in London. He contrasts the failure of the Indigent Blind Visiting Society with the success of
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another institution, a small but “very excellent and noble one” (xiii), which teaches blind people
to read, also in London.White also praises the Blind Man’s Friend Society, a posthumous legacy
of Charles Day, a gentleman moved to make his bequest by his own experience of acquired
blindness.White, though appreciative of the work of this Society, which provided small pensions
to blind people, quotes a letter from its treasurer in which he explains that there are 2,500 blind
people who the Society considers deserving but cannot afford to assist. White’s incorporation
into his book of both an annual report and the letter of a treasurer can be read as something
that might be usefully thought of as activist accounting. More than a measure of the eccentri-
city of his project, White’s detailed discussion of charitable organizations’ failure to provide for
an impoverished blind population is a persuasive engagement with the reality of blind people’s
poverty.
What I wish to emphasize in closing this chapter is that both the content of White’s
Blindness and the publication of this poem by subscription embody White’s double identity
as beggar and poet. In Blindness, White shared an unconventional story of vision loss with
his subscribers but he did so using negative language about blindness that, while it may have
accurately reflected White’s experience and values, was wholly consistent with widely held
social beliefs about blindness. White’s poem is, not unlike the larger discourse on blindness
in the period, shaped by beliefs about compensation, both belief in blind people’s non-
monetary compensation with the gift of literary inspiration and belief in society’s moral
obligation to provide financial support to people with acquired blindness. Reflecting White’s
aspirational identification with the blind poet and his real life position as blind beggar,
White’s poem is part Miltonic epic, part begging letter and part beggar’s placard. Its mix of
topics, genres and poetic conventions demonstrates White’s complicated perception of his
own disability as a condition characterized by both poetic inspiration and poverty. While
the blind poet embodies the myth of the compensatory gift, with sensory loss compensated
by poetic inspiration and literary talent, the blind beggar, shut out from paid employment,
is obliged to appeal for charity. It is in this sense that White’s Blindness is a record not only
of the cultural significance of the blind poet and the blind beggar but also of the real-world
proximity of these two identities.
Works cited
Blacklock, Thomas. Poems by Mr.Thomas Blacklock. 2nd ed. London: R. and J. Dodsley, 1756.
Carpenter, Mary Wilson. “Blinding the Hero.” Differences, vol.17, no.3, 2006, pp.52–68.
Dickens, Charles. “The Begging-Letter Writer.” Household Words, no.8, May 18, 1850, pp.169–72.
Holmes, Martha Stoddard. Fictions of Affliction: Physical Disability in Victorian Culture, Ann Arbor: University
———. “Working (with) the Rhetoric of Affliction: Autobiographical Narratives of Victorians with
Physical Disabilities” in Embodied Rhetorics: Disability in Language and Culture, ed. James C. Wilson and
Cynthia Lewiecki-Wilson. Carbondale: Southern Illinois University Press, 2001.
Klages, Mary. Woeful Afflictions: Disability and Sentimentality in Victorian America. Philadelphia: University of
Pennsylvania Press, 1999.
Mayhew, Henry with Bracebridge Hemyng, John Binny and Andrew Halliday. London Labour and the
London Poor, vol 4. Charles Griffin and Company, 1861.
Mowat, Charles Loch. The Charity Organisation Society; 1869–1913: Its Ideas and Work. Methuen, 1961.
“On Beggars.” London Journal, vol.72, no.3, July 11, 1846, pp.294–5.
Rodas, Julia Miele. “Misappropriations: Hugh Stuart Boyd and the Blindness of Elizabeth Barrett
Browning.” Victorian Review, vol.33, no.1, 2007, pp.103–18.
Symons, Arthur. “The Blind Beggar.” Poems.Vol 1. William Heinemann, 1912, p.36.
Tilley, Heather. Blindness and Writing: From Wordsworth to Gissing. Cambridge: Cambridge University
Press, 2018.
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Warne, Vanessa. Nineteenth-Century Disability: Cultures & Contexts, Annotation of Symons, Arthur, “The
Blind Beggar,” www.nineteenthcenturydisability.org/items/show/12.
———. Nineteenth-
Century Disability: Cultures & Contexts, Annotation of Wordsworth, William, The
Prelude, www.nineteenthcenturydisability.org/items/show/11.
———. “Blindness: Creating and Consuming a Nonvisual Culture,” in A Cultural History of Disability in
the Long Nineteenth Century, ed. Joyce Huff and Martha Stoddard Holmes. London: Bloomsbury, 2019,
pp.79–94.
White, Edmund. Blindness: A Discursive Poem in Five Cantos. James Martin, 1856.
———. The Genius of the Blind: A Poem in Five Cantos. James Martin, 1859.
Wordsworth,William. The Prelude: A Parallel Text, ed. Ernest de Selincourt. 2nd ed. Oxford: Clarendon, 1959.
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16
DEAFNESS AND MODERNISM
Rebecca Sanchez
One of the most exciting recent developments in literary disability studies has been the
movement to consider how nonnormative embodiment, intellectual and psychiatric ways of
being can operate not only as objects of study but as methodologies, as epistemologies that
shape our encounters with cultural texts regardless of the presence of a clear and obvious link
to disability. The idea of disability’s broad relevance to the ways we engage with literature is
not itself new. To focus on deafness in particular, in his 1995 Enforcing Normalcy, Lennard Davis
explores the idea of “deafness as a critical modality” (100), and in Writing Deafness (2007),
Christopher Krentz argues that “the hearing line resides behind every speech act, every moment
of silence, every gesture, and every form of human communication, whether physical deafness
is present or not” (5). Despite these vital interventions, however, in practice the vast majority of
people working at the intersection of deafness and literary studies have continued to draw on
texts that feature deaf characters, explicitly reference deafness, or are written by deaf authors.1
And this is true of analyses of disability more broadly.
To be clear, such scholarship is vital in demonstrating the ways that disability, far from being
peripheral to the literary canon, has in fact suffused it. Much more analysis in this vein is
required to continue to recover the work of disabled artists and to unpack the ways cultural
representations of disability have shaped both people’s understanding of disability off the page
and our various literary traditions. Maren Linett’s Bodies of Modernism (2016), for example,
argues for the importance of analyzing representation in modernist texts because of how such
“depiction affects the overall workings of the text and what it tells us about how embodiment
was understood in particular times and places” (5). Modernist representations of deafness in par-
ticular, she notes, “demonstrate larger attitudes about speech, communication, subjectivity and
means of accessing knowledge” (86).
As I argue in Deafening Modernism (2015), however, the focus on representation as the pri-
mary (or only) demonstration of the significance of disability studies in the humanities has had
the unfortunate consequence of perpetuating the belief that discussions of disability are not
relevant to those without a direct link to disability, a misconception that has too often resulted
in the siloing of literary disability studies. Moreover, analysis of representation often falls into
the trap of positioning disabled people as objects of analysis in ways that do not always fully
account for disability perspectives. As Julie Avril Minich, Jina B. Kim, and Sami Schalk highlight
in a 2017 exchange in Lateral, the critical methodologies we use have social justice implications.
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Rebecca Sanchez
Pondering how to address the precarity of disabled lives at a moment of flourishing for the
field of disability studies, Minich argues that we “recommit the field to its origins in social
justice work” precisely by approaching disability not as subject or object of study but rather
as active practice grounded in the worldings of disabled people. Or, as Kim puts it, “shifting
disability from noun –an identity one can occupy –to verb: a critical methodology.” Such a
“verbing” would both foreground the epistemologies of disabled people and emphasize the
intersectionality of disability experience by moving focus away from how disability is defined
and toward the myriad ways in which it is done. It would also implicate pedagogical practices
around accessibility which have not always been registered as inextricably bound to theoriza-
tion of disability in the ways they might be.
Critical deafness, or deafness as (self-reflexive) methodology, that is, can operate not only to
complicate and nuance our understandings of the particular text or period being studied, but
also to actively intervene in the cultural and political conversations for which deaf insight is vital
(if unrecognized), to ensure that deaf people are perceived not as objects of study upon which
hearing people can enact their education but as central to discourses that engage with deafness.
Deafening conversations and texts in this way also expands our understanding of the meanings
of deafness itself and engages broader communities in political struggles around language access,
education, and identity facing deaf people.
We might, for instance, consider how concepts of deaf space and architecture, which facili-
tate communication by maximizing the potential for eye lines through light design, transparent
materials, and open floor plans, inform conversations in other contexts about how individuals
relate to the built environment. Or we could think about deaf forms of relationship –the
ways deaf people interact with one another when signing or with interpreters, for instance –
in conversations about characters might more ethically or meaningfully interact. Literacy in
languages that do not exist as spoken or written modalities could similarly expand conversations
about what reading is and how language acquisition occurs. Because there is often a failure to
recognize disability generally or deafness in particular as anything other than deficit, however,
these cripistemologies are often neglected in theorizations of space, place, temporality, commu-
nication, embodiment, and the myriad other contexts in which such insight is relevant. And that
lack of imagination also limits the ways we conceptualize deafness itself.
Analyzing the relationship between deafness and modernism, then, needs to not only be
about the recovery of work by deaf authors and analysis of deaf characters or language explicitly
pertaining to deafness, but also a project of analyzing the ways in which deaf history, culture, and
language use are always relevant to experimental modernist praxis, even and especially when
no literal deafness is present in a text. And more than gesturing toward such connections, we
need to provide concrete examples of what such readings might entail. With that in mind, this
chapter will consider the relationship between modernist experimentation with the linguistic
image and the model of interpenetrative animacy offered by the realization of such images
in ASL (American Sign Language). In particular, drawing on an understanding of deafness
as relationality that I will argue emerges through the deployment of anthropomorphism in
ASL poetics, I will demonstrate how deafening modernist poetry in this methodological sense
enables us to register links between linguistic images and the ecopoetics explored in Marianne
Moore’s 1924 long poem “An Octopus.”
Given modernism’s engagement with questions and practices of indeterminacy, embodiment,
translation, and trace, it is an especially rich context in which to engage in critical deafening.
While modernist representations of disability generally and deafness specifically tended to be
overwhelmingly negative, with deafness standing in for “…metaphysical loneliness and epis-
temological failure” (Linett 86) in the works of writers like Eudora Welty, Elizabeth Bowen,
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and Carson McCullers, modernist texts have much to tell us about communicative norms and
methods of resisting them. Disability studies broadly challenges our assumptions about phys-
ical, intellectual, and psychiatric norms; a focus on deafness puts particular pressure on the
assumptions we make about language: what constitutes language, what can or should the body
look like while engaging in linguistic activity, whose communicative practice count as linguistic
(and, by extension, who is counted and who is not). These questions are of particular relevance
for considerations of aesthetic experimentation in the early twentieth century at the intersec-
tion of bodies, images, and language, experiments that were undertaken against a backdrop of
increasingly fervent calls for linguistic conformity that would ultimately shape both twentieth-
century deaf lives and experimental modernist praxis.
United States language politics in the late nineteenth and early twentieth century revolved
around the construction of both the myth of the existence of a “purer” American English in
the past that needed to be preserved against a rapidly shifting linguistic environment and, given
the lack of such an actual unified language, the invention of one in the present. The land occu-
pied by the United States has always been home to a great deal of linguistic diversity, both in
the range of languages used and in the myriad ways in which English, since its arrival, has been
deployed. For a time, that diversity was recognized as a distinct quality of the nation. Politicians
recruited new immigrants by publicizing the country in foreign languages.2 Citizenship was
not dependent on the mastery, or even necessarily the usage, of English. In fact, heterogeneous
language practices were directly linked with the United States’ form of democratic government.
As Alexis de Tocuqueville muses in Democracy in America (2003), “The constant restlessness at the
center of a democracy leads…to endless developments in the language…” (554).
In the years leading into the modernist period, however, attitudes toward language shifted
dramatically. After the American Civil War, many came to perceive linguistic difference as a dan-
gerous reminder that “Americans” did not share a singular culture, history, or racial or ethnic
identity. This diversity was underlined as increases in immigration and in overseas imperialism,
the latter after the Spanish American War of 1898, continued to alter the demographics of the
nation. Unlike skin color or heritage, language, it was believed, could be modified, and efforts
were therefore made to codify a unified American identity around a standardized “American”
English. In conjunction with the rise of eugenic philosophy and a widespread nativism and
xenophobia, those who used languages other than English or who used English in nonnormative
ways found themselves increasingly under attack.
In 1907 Theodore Roosevelt declared, “We have room for but one language in this country,
and that is the English language, for we intend to see that the crucible turns our people out as
Americans, of American nationality, and not as dwellers in a polyglot boarding house” (8).To be
American in the early twentieth century, that is, one had to have fluency in English. The link
between the two was put into law by the Naturalization Act of 1906, the first law to establish
English-language literacy as a requirement for citizenship.As Joshua Miller has noted, these issues
were exacerbated by the United States’ entry into the First World War, which set off new waves
of xenophobia as well as a renewed desire for a recognizably American identity. In that context,
Miller explains, language “became understood as a surrogate for race and class differences.Those
who could not or chose not to speak English or who spoke it in unfamiliar accents came to be
viewed as unpatriotic and potentially subversive threats to national unity” (36).
The stakes of linguistic compliance, that is, were high. And this had particularly dan-
gerous implications for American’s two indigenous non-English speaking populations: Native
Americans and the deaf, both of which were targeted for reeducation through residential
boarding school systems that enabled a greater level of biopolitical control than was pos-
sible with other groups. For deaf people, this push for standardized language usage occurred
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at the same moment that the development of new technologies of sound recording like the
phonautograph were creating opportunities for different kinds of articulation training.3 Excited
by the prospect that the deaf could be “ma[de] [to] hear,” in the words of Alexander Graham
Bell, oralists –those who believed that deaf people should be taught to speak and speechread
and forbidden to sign –took over deaf schools across the country, firing deaf teachers and
shifting curriculums to focus exclusively on the acquisition of normative speech (Bell). This
zeitgeist was bolstered by the Second International Congress on Education of the Deaf held
in 1880 in Milan, which had determined that signed languages were damaging to deaf people
and should be banned from deaf schools. Children who failed to comply were often physically
punished, a trend that continued across the twentieth century. “Whenever teachers and dorm
counselors saw that I was signing, they would whack me on the hand with a ruler. I was 4
½,” one former boarding school resident recalled in an interview in 2008. “Can you imagine
smacking such a tiny hand?” Another former student recalled how the principal “came up to
me and mouthed the words ‘you signed.’ I had no idea what she was talking about. ‘Give me
your hand!’ I put out my hand, and she smacked me several times. She repeated, ‘You signed’
and kept on whacking my hand” (Audism Unveiled). Failure to abandon one’s native language
in the context of these boarding schools was a transgression severe enough to be met with
corporal punishment.
This illustration of how far English language nativists were willing to go to impose a
standardized English is vital for understanding the climate in which modernist writers engaged
with English in nonnormative ways in their creative work. At the same moment that nativists
sought to produce and enforce a “unified” American English that would align with the United
States’ new status as a global power, modernists were using linguistic experimentation to high-
light the pluralism of languages and forms of language used by people within the United States
through techniques ranging from incorporating vernacular forms of speech to fragmentation
to bricolage. Such work rejected the idea forwarded by H.L. Mencken that “The character
chiefly noted in American speech by all who have discussed it, are, first, its general uniformity
throughout the country…[T]‌here is practically no difference between the American spoken
in our 4,039,000 square miles of territory, except as spoken by foreigners” (28) as well as the
notion that a uniform American language functioned as an indicator of the national strength.
Signed languages, which foreground not only linguistic diversity but also the very nonnormative
bodyminds that were rendered invisible by claims like Mencken’s, similarly highlight the mean-
ingful absences of such accounts.
Beyond these broad contextual links, the existence of signed languages at the intersection
of language, bodies, and images also enable us to engage more specifically with modernist
preoccupation with the ontology of the linguistic image and the relation such images suggest
between words and things. Ezra Pound attempted to codify this relationship in his famous call
for “direct treatment of the thing” (3) that was to be “free from [the] emotional slither” (12)
he associated with nineteenth-century verse. “It will be as much like granite as it can be” (12),
Pound said of this new, more direct, imagistic poetry, fixating on H.D.’s image in “Hermes of the
Ways” of the “hard sand break[ing]/…the grains of it…/…clear as wine” (37) as an example of
such writing. Pound envisioned a meeting of words and things through language that was pres-
entational. “Don’t be descriptive,” he insisted, praising Shakespeare’s image of “Dawn in russet
mantle clad” for “present[ing] something which the painter does not present.There is in this line
of his nothing that one can call description; he presents” (6). Imagism as a movement, and par-
ticularly Pound’s engagement with it, was notoriously short-lived. But I revisit his articulation
of this understanding of the visual image both because his specific ideas about what happens
in the space where the visual meets the semantic interestingly intersect with aspects of actual
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visual languages and because the underlying assumption that such a question was valuable had a
significant afterlife, appearing reimagined in the work of writers across the twentieth century.4
It is important to point out in any conversation of ASL and images that signed languages
are not iconographic. As in other languages, words are comprised of smaller abstract units (ASL
has five: handshape, movement, palm orientation, location, and nonmanual signifiers like facial
expression). Nevertheless, signed languages have different relationships to both images and
signifieds than do spoken and written ones.Words in ASL are tangible.They can be manipulated,
moved through space and time, captured and reshaped. While signs do not (re)produce the
real, the signified they reference, they do produce a real, a material sign-thing in spacetime.
And this has implications for how the relationship between humans and nonhuman entities
is conceptualized. There exists in signed languages a foundational interpenetration between
humans, words, and their referents that links conversations about animacy to the ontology of
the linguistic image.
In the first chapter of The Heart of the Hydrogen Jukebox (2009), Miriam Lerner’s docu-
mentary on the development of ASL poetry in the 1980s in Rochester, a series of ASL poems
illustrate these dynamics. The unattributed works are translations of images of natural scenes
that appear behind the signer. The first features trees whose leaves have changed to orange and
yellow in the autumn along a lake that plunges into a series of waterfalls that occupy the fore-
ground of the image. The signer begins by placing the “old yellow red trees,” their shape on the
land, the way their leaves rustle in the breeze, before establishing the lake in front of them which
ripples gently in the signer’s hands before spilling over into a series of gently plashing waterfalls.5
Not only is the falling water active, but so is each element of the environment, all of which are
interconnected, bleeding into and through one another. The scene comes alive. Or, rather, its
translation into ASL foregrounds its always already existing animation.
Similarly in the next translation of an image of sun beams breaking through pine trees in a
forest, the signer begins by establishing the rustling grass on the forest floor before setting up
the trees, each bursting into life as though it were newly sprouted from the ground, its leaves
and needles established with flickering hands that resemble impressionist brushstrokes. The sun
beams push through the dense forest, through branches and around trunks, actively interpene-
trating the scene before landing on the forest floor. Again, each element of the scene is active,
engaged, animate. Nothing is still in this still life; it is all in the process of happening in what
Gertrude Stein describes in “Composition as Explanation” as a “continuous present” that, unlike
repetition or “beginning again and again” produces an immediacy and vitality in writing (524).
That vitality is a critical part of what ASL adds to our understanding of how language
interacts with the visual. Signed languages have the capacity to translate not only words but
images, which can be presented rather than described. And that presentation highlights the
activeness of the image as well as its interpenetration with the human, the interaction of beings
across the animacy hierarchy. Animacy, Mel Chen explains, “has been described variously as
a quality of agency, awareness, mobility, and liveliness” (2). “Language users,” she continues,
make use of “animacy hierarchies to manipulate, affirm, and shift the ontologies that matter
the world” (42). Signed languages have a unique relationship to linguistic animacy in that each
word is animated in the hands of the signer. Beyond this basic fact of that movement, the insep-
arability of human and word bleeds into a blurring of elements within the scene. Each aspect
of the environment the signer produces continues moving, sliding into the next. Rather than
constituting a fixed backdrop for more animate humans or animals, the trees, water, grass, and
light are constantly changing and moving into one another as well as the signer.
That interpenetration is key. The signer is not set apart from the world around her or the
linguistic images she calls into being. Clayton Valli’s “Deaf World” emphasizes this sense of
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connection thematically by positing technologically mediated sound as an imposition not only

on a deaf child, but on the world itself. By contrast, the signer notes, the rocks, water, trees,
mountains, clouds, and world itself are deaf, an association that flips ableist understandings of
disability as abnormal or unnatural. Rather than experiencing a sense of connection with the
human world of film and music, the signer identifies with the nonhuman. Here deafness is
defined not as medicalized condition or social construction but rather as a form of relationality,
specifically to the natural world, a form of interaction through which the poem’s signer finds
sameness with the rock or the clouds.
This identification provides an alternative means of understanding or evaluating animacy
that is also explored in Valli’s poem “Hands.” “Hands” explores the implications of the fact that
in signed languages things in environment –trees, rain, the world itself –are imaged through
human hands. “What are hands?” the poem asks, answering the question with a series of natural
images: rain falling, flowers blooming, wind blowing, leaves falling from trees, the world itself,
and finally self-expression. The “human” elements of that list, the hands and the expression of
self, are not segregated from these other entities; the meaning of the hands and of that artistic
expression are the ways in which the environment is embodied in them. Moreover, as in the
image translations of Hydrogen Jukebox, each of these images are in motion; the signs themselves,
and therefore their signifieds, are understood as fluid, changing, being (verbing).
When we contemplate deafening as modality, deafness as a doing or praxis, these are some
of the modes of interaction that emerge. As Chen notes, “the sentience of a noun phrase has
linguistic and grammatical consequences, and these consequences are never merely grammat-
ical and linguistic, but also deeply political” (55). And, we might add, ethical. Embedded within
animacy hierarchies is information about the ways in which humans conceptualize their rela-
tionship to other living and nonliving entities. ASL and other signed languages enable linguistic
expressions of those relationships that are structurally impossible in spoken and written lan-
guage. And these linguistic embodiments, as Rachel Sutton-Spence and Donna Jo Napoli note,
“reveal a Deaf world view” (448) that “contribute[s]‌to the cohesion of Deaf communities”
(443) by staging the interpenetration of the human and the nonhuman as a matter of everyday
language use.
This interpenetration also provides new ways of thinking about anthropomorphism.
Anthropomorphism is frequently critiqued as a violent attempt to translate (and thereby fun-
damentally alter) the world around the human into a human frame of reference, an aspect that
is not entirely absent from signed anthropomorphism. But there is a difference between using
language to describe an anthropomorphic relationship (as, for instance, the image of a rock
patiently waiting, in which the rock appears to be translated into human terms, its otherness
domesticated) and enacting it, doing anthropomorphism so that the human signing the image
must, for the duration of that linguistic performance, inhabit rock-ness. As Sutton-Spence and
Napoli argue, whether presenting nonhuman animals with roughly similar bodily topologies,
in which case the signer can map the subject’s body parts onto her own, or inanimate objects,
which can be presented through the use of classifiers and/or nonmanual signifiers, “anthropo-
morphism in sign languages demonstrates the extraordinary potential for storytellers and poets
to present alternative worldviews through the direct transfer of person of nonhuman entities”
(471).6 This extended sense of self is encapsulated in one of the BSL signs for empathy which, as
Sutton-Spence and Napoli note, is glossed as CHANGE-PLACES-WITH (451). To linguistic-
ally embody a nonhuman entity is to occupy their perspective, to position oneself within their
frame of reference. That experience of deafening, of enacting the subject position of entities
along the animacy hierarchy, functions to decenter the human or, more particularly, given the
ways that anthropomorphized characters in deaf stories and poetry overwhelmingly tend to
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be presented as deaf (while human characters are more likely to be portrayed as hearing), they
create possibilities for forms of identification across species and animacy lines.
That radical decentering of the human, specifically by understanding humanness in rela-
tion to the animate and inanimate environment, is key to Marianne Moore’s ecopoetics in “An
Octopus,” and helps us link the poem’s consideration of interdependence with its use of images.
The text opens with an image of interpenetrative relationality that characterizes the poem’s
approach to the environment: “An Octopus //of ice. Deceptively reserved and flat” (1). Rather
than using anthropomorphism to center human experience, the mountain is imagined as an
octopus; specifically the octopus flattening itself as it hides on the sea floor. In the next few lines,
the ice is also presented “killing prey with the concentric crushing rigour of the python” (9) and
“hover[ing] forward ‘spider fashion’ ” (10). In addition to linking the mountain to animals,
these descriptions emphasize movement. “An Octopus //of ice” gives us the mountain both
as teeming ecosystem and as ice and rock that are constantly shifting, the glacier advancing and
retreating (in part, not incidentally, as a result of anthropogenic climate change). The image of
glacier as octopus does more than present a jarring imaginative rendering of Mt. Rainier; it also
deconstructs a false perception of mountains as fixed and unmoving. The ice does shift. The
various living and un-living organisms that inhabit Mt. Rainier are constantly in motion. And
the rock itself, composed of andesite lava flows, functions as a record of former explosive activity.
Understanding movement and ecological interpenetration as bound up in the visual image
enables us to register the implications of Moore’s opening lines. The poem circles around this
question of how humans relate (or should relate) to “the diversity of creatures” (75) (human and
nonhuman) who inhabit the mountain, to the mountain itself, and the role language plays in
the structuring of those relationships. Pondering the word “tree,” the poetic speaker questions
whether it is an appropriate
…word for these things

“flat on the ground like vines”
some “bent in a half circle with branches on one side
suggesting dust-brushes, not trees,
some finding strength in union, forming little stunted groves
their flattened mats of branches shrunk in trying to escape”
from the hard mountain “planed by ice and polished by the wind” (180–186)
What is missing from the spoken and written linguistic modalities to which Moore has access
is the capacity to present change over time, the dynamic and interdependent existence of trees
(though she can, and does, describe it). Because ASL has a different relationship to space, time,
and movement than English does, the sign “tree” can convey this particular scenario. Through
classifiers ASL trees can lay on the ground, or have branches on just one side, or be positioned in
groups. Moreover the ways in which ASL expresses that dynamism are implicated in the inter-
penetration of trees with other aspects of the environment including humans that the poem
describes. By enacting that relation, ASL conditions signers to think about the modes of inter-
relation with the natural world that “An Octopus” imagines.
Within the poem that interrelation is positioned against more common linguistic approaches
to nature and the misperceptions they perpetuate, specifically the rhetoric of the National Park
Services brochure that the poem remixes. As Jennifer Ladino argues, Moore’s poem uses its
bricolage of government rhetoric, quotation, personal observation, and poetic images to cri-
tique the “NPS’s anthropocentric approaches to nature and its manufacture of Mount Rainier
as a commodifiable resource” (289).That composition praxis functions not only as an alternative
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to the didacticism of the brochure by “treat[ing] the NPS instructions as, first and foremost,
‘rewritable’ ” (298) but also to convey something structural about what a mountain is and
how humans might relate to it. “An Octopus” demonstrates a way of thinking the interaction
between language and the natural world that isn’t about naming, dominating, or domesti-
cating (i.e. centering the human) but that instead highlights the structural parallels between the
shifting, interpenetrative, indeterminate ecosystem of Mt. Rainier and the forms of language
Moore deploys to express that.
In that attempt to find in the composition of language something of the mountain (rather
than shaping the mountain to not only existing vocabularies but existing arrangements),
Moore’s poem reflects the ways that signed languages enact images. Unlike Pound’s ideal of
unmoving granite, in ASL our mountains move, the sign for rock sliding into open hands
thrown upward towards a mountain shape they cannot fully contain.The work of translating the
poem’s title and opening line into ASL would be learning how to inhabit the similarity of shape
and movement between mountain and octopus that it suggests, drawing together the sign for
mountain and octopus, making glacial arms embodied in human fingers resemble tentacles. To
exist in ASL is to consider, as part of both poetic but also quotidian engagement with language,
what it means to dwell in and with these entities, to perceive them as interrelated with the self
rather than separate. As Valli suggests in “Deaf Worlds,” deafness itself might be conceptualized
as a form not (only) of physiology or identity but of relationality between the human and the
nonhuman. It also reminds us of the link between such forms of boundary blurring interaction
and the visual image.
Such reflection calls our attention to the ways humans are present in the English version
of the poem’s opening lines (“An Octopus //of ice”) as well, as the observer who notices the
relationship between the glacier and the octopus. Whether or not such a relation would onto-
logically exist in the absence of human observation (whether the resemblance is imposed by
human perception or merely recognized by it), it is a human who records that in language. But
this understanding of the human –as recognizer of relationality –moves away from ways in
which the interaction between humans and the natural world have tended to be figured: as sep-
arate, something to be named, something over which humans have dominion. If deafness can be
imagined as a series of modes of interaction with other subjects and with the world, humanity
itself might be defined as a state of recognizing relation.
Bonnie Costello has argued that “ultimately [“An Octopus”] is not a poem about Mt.
Rainier…[it] is about nothing less than the earth and our institutional and imaginative relation-
ship to it” (100). But as reading the poem in the context of ASL literature helps us recognize,
these need not be conceptualized as separate things. The shifting, animate ecosystem that is
Mt. Rainier offers a model of relationality that might also be productively engaged in terms of
the ways humans both interact with nonhuman entities in their environment and the ways we
figure those interactions in language.
Describing Moore’s concept of humility in relation to her depiction of the natural world,
Jennifer Leader argues for the importance (and need for further consideration) of the “notion
of being as complex interplay between self and other…particularly evident when Moore begins
to explore a relational connectivity amongst natural entities in her animal poetry” (329). As
thinking about signed languages in relation to these concerns highlights, such complex inter-
play between self and other is the essence of ASL, and this fact has both ethical and ecological
implications. Through its deployment of animorphism and the ways its movement through
spacetime shifts our understanding of animacy, ASL demonstrates that language need not be in
opposition to the kinds of interpenetrative ecopoetic relationality imagined in “An Octopus.”
And in framing conversations about language in these terms, Moore’s poem opens up new
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spaces in which to theorize the particular linguistic strategies of ASL. By exploring some of the
ways that deafening modernist experiments with the linguistic image complicates and enhances
our understanding of both, it has been my hope to demonstrate the broad and pressing rele-
vance of conversations about deaf cultures, poetics, and languages to contexts in which they
have not traditionally been perceived as relevant.
Notes
1 It is common to indicate a distinction between physiological and cultural deafness with the use of a
capital D in the case of the latter. This practice dates to a presentation given by James Woodward (then
of Gallaudet University) in 1972 (published in 1978). As Woodward and Thomas Horejes explained in
2016, the terminology was never intended as a taxonomy; “People can be both ‘deaf ’ and ‘Deaf ’ at the
same time (285).” James Woorward and Thomas Horejes, “deaf/Deaf: Origins and Usage,” The Sage Deaf
Studies Encyclopedia Eds. Genie Gertz and Patrick Boundreault (Los Angeles: Sage Reference, 2016),
pp. 284–287. The distinction, they note, is also inadequate to attend to the intersectional identities of
deaf people and the different significances attached to deafness in diverse cultural contexts. Since the
1970s, however, it has been used to create a binary division between different “kinds” of deaf people
and to assign value to individuals perceived to occupy one or the other group. To avoid this problematic
bifurcation, throughout the chapter, I will use the lower case.
2 See Bailey, Speaking American, 14.
3 For more on the connections between sound-recording technology and deaf pedagogy, see Sterne, The
Audible Past.
4 While this chapter focuses on ASL in relation to visual images, it is important to note that ASL is not
always experienced as a visual modality. Signing deafblind individuals read Tactile ASL (TASL) in their
hands and on their bodies.
5 Unless otherwise noted, translations of ASL texts are by author.
6 Classifiers are handshapes that can substitute for nouns and verbs in ASL to convey information about
size, shape, movement, and relation to other subjects and objects in an environment.
Works cited
Audism Unveiled. Prod. Benjamin Bahan, H-Dirksen Bauman, and Facundo Montenegro. Dawn Sign,
2008. DVD.
Bailey, Richard W. Speaking American: A History of English in the United States. Oxford: Oxford University
Press, 2012.
Bell, Alexander Graham. Personal correspondence with Mary E. Bennett. August 30, 1913. www.loc.gov/
resource/magbell.16900133/?sp=4&st=text.
Chen, Mel. Animacies: Biopolitics, Racial Mattering, and Queer Affect. Durham: Duke University Press, 2012.
Costello, Bonnie. Shifting Ground: Reinventing Landscape in Modern American Poetry. Cambridge: Harvard
Davis, Lennard J. Enforcing Normalcy: Disability, Deafness, and the Body. London: Verso, 1995.
H.D. “Hermes of the Ways.” H.D. Collected Poems 1912–1944. Ed. Louis L. Martz. New York: New
Directions. 1925, pp.37–39.
Lerner, Miriam (dir.). The Heart of the Hydrogen Jukebox. Rochester Institute of Technology. 2009.
Kim, Jina B. “Toward a Crip-of-Color Critique: Thinking with Minich’s ‘Enabling Whom?’ ” Lateral 5.1
(2017). http://csalateral.org/issue/6-1/forum-alt-humanities-critical-disability-studies-crip-of-color-
critique-kim/.
Krentz, Christopher. Writing Deafness: The Hearing Line in Nineteenth-Century American Literature. Durham:
University of North Carolina Press, 2007.
Ladino, Jennifer K. “Rewriting Nature Tourism in ‘An Age of Violence’: Tactical Collage in Marianne
Moore’s ‘An Octopus.’” Twentieth Century Literature 51.3 (2005), pp. 285–315.
Leader, Jennifer. “ ‘Certain Axioms and Rivaling Scriptures’: Marianne Moore, Reinhold Niebuhr, and the
Ethics of Engagement.” Twentieth Century Literature vol.51. no.3 (2003), pp. 316–340.
Linett, Maren. Bodies of Modernism: Physical Disability in Transatlantic Modernist Literature. Ann Arbor:
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Mencken, H.L. The American Language: An Inquiry Into the Development of English in the United States (1919).
West Valley City, Utah: The Editorium LLC, 2001.
Miller, Joshua A. Accented America: The Cultural Politics of Multilingual Modernism. Oxford: Oxford University
Press, 2011.
Minich, Julie Avril. “Enabling Whom? Critical Disability Studies Now.” Lateral vol.5, no.1, 2016. http://
csalateral.org/issue/5-1/forum-alt-humanities-critical-disability-studies-now-minich/.
Moore, Marianne. “An Octopus.” Complete Poems. New York: Penguin Books. 1967, pp. 71–76.
Pound, Ezra. “A Retrospect.” Literary Essays of Ezra Pound. Ed.T.S. Eliot. New York: New Directions, 1918.
Roosevelt, Theodor. Qtd. in James Crawford, At War with Diversity:US Language Policy in an Age of Anxiety.
Clevedon, UK: Cromwell, 2000.
Sanchez, Rebecca. Deafening Modernism: Embodied Language and Visual Poetics in American Literature.
New York: New York University Press, 2015.
Schalk, Sami. “Critical Disability Studies as Methodology.” Lateral vol.5, no.1 (2017). http://csalateral.org/
issue/6-1/forum-alt-humanities-critical-disability-studies-methodology-schalk/.
Stein, Gertrude. “Composition as Explanation.” Stein Writings 1903–1932. New York: The Library of
America, 1998. 520–529.
Sterne, Jonathan. The Audible Past: Cultural Origins of Sound Reproduction. Durham: Duke University
Press, 2003.
Sutton-Spence, Rachel and Donna Jo Napoli. “Anthropomorphism in Sign Languages: A Look at Poetry
and Storytelling with a Focus on British Sign Language.” Sign Language Studies, vol.10, no.4, 2010,
pp.442–475.
de Tocqueville, Alexis. Democracy in America. New York: Penguin, 2003.
Valli, Clayton. “Deaf World.” ASL Poetry: Selected Works of Clayton Valli. San Diego: DawnSign Press, 1995.
Valli, Clayton. “Hands.” ASL Poetry: Selected Works of Clayton Valli. San Diego: DawnSign Press, 1995.
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17
THE “FURY OF LOVING
JOYFULLY”
Amelia Rosselli’s War Variations
Elizabeth Leake
Amelia Rosselli (1930–1996)

To speak of the life of Italian poet Amelia Rosselli, it is conventional to begin with the death of
her father, Carlo Rosselli. Co-founder and principal theoretician of the Italian anti-fascist resist-
ance group Giustizia e Libertà (Justice and Freedom), he and his brother Nello were assassinated
in 1937 on Mussolini’s orders. The practical and symbolic importance of their deaths –over
150,000 people attended Carlo’s funeral –must not be underestimated if we are to have any
sense of Amelia Rosselli’s position as the daughter of Carlo Rosselli, one of the brightest
stars in the firmament of Italian Resistance heroes and from whose legacy she is inseparable.1
Rosselli was the daughter of “the very incarnation of the Resistance” long before she was a poet
(Pugliese 2). Later, her familial and literary identities merged when she became custodian of her
father’s memory as the editor of his personal correspondence.2
The aim of this chapter is to elucidate the repercussions of critical readings of disability
that resist its representation through a game of continual substitution. Where Rosselli writes
about her disability, her critics invoke her family history; where Rosselli writes about poetry,
the critics invoke her disability; and where the poet writes about history, the critic invokes her
poetry. What does it mean that her critical readership plays a continuous shell game with a
theme she consistently foregrounds throughout her opus? And what are the ramifications for
disability studies when we consider mental illness as a disability? The reception of Rosselli’s
poetry in the light of her mental illness and death exemplify the limitations of critical modalities
that ground aesthetic representations of disability within the exclusive purview of the symbol.
Rosselli’s case illustrates the risk of reading madness as metaphor, obviating the possibility of
aesthetic analysis.
After her father’s murder, Rosselli and her siblings were raised by her grandmother Amelia
Pincherle Moravia Rosselli and her mother, Marion Cave. Of these two, it is Rosselli’s grand-
mother who looms largest, since Cave’s precarious health caused frequent absences from home.
Pincherle Moravia Rosselli was a well-known and prolific author.3 Likened to Cornelia the
mother of the ancient Roman Gracchi brothers, whose self-sacrifices for political reasons
were born from the teachings of their mother,4 all three of her children died for political
reasons: besides Carlo and Nello, her firstborn, Aldo, was killed in 1916 by the Austrians.5
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Pincherle Moravia Rosselli first attained fame as a playwright with her three-act drama
Anima (1898);6 it tells the story of a woman who reveals to her fiancé that she was raped as
an adolescent, only to be abandoned by him on the grounds that she is unworthy of marriage.
Anima argues for the existence of a kinship of souls between two people that is independent
of their bodily histories: that is, for the irrelevance of the body to one’s “true” identity, locating
the Subject (anima) entirely external to the body such that the soul (identity, subjectivity) is
immune to bodily violence. She returned to that question in the short story Fratelli minori
(Younger Brothers) in 1921, that is, five years after the battle-field death of her firstborn son, Aldo.
The story extends Anima’s debate about the aftermath of sexual violence to military violence,
again privileging the soul over the body, but with a twist. Focusing on the wartime death of
an eldest son and its repercussions for the younger brothers of the title, the same hierarchy
(soul>body) is recast in exclusively political terms, and leads to the sacrifice of the younger
brothers –a point surely not lost on Carlo and Nello. Thus, Pincherle Moravia Rosselli’s works,
like her granddaughter’s life, are similarly embroiled in the nexus of family, nation, and history
inscribed upon the bodies of her subjects.
Considering the circumstances of her father’s death, it is perhaps no surprise that much
Rosselli scholarship emphasizes this aspect of her genealogy. Upon reaching adulthood, Rosselli
moved on the fringe of an innovative poetic circle, the Gruppo ‘63. She gained a wide audience
when selections of her poems were published in the prestigious journal Menabò with an intro-
duction by Pier Paolo Pasolini. But it was after her suicide on the 33rd anniversary of Sylvia
Plath’s death that her work garnered real public attention. Specifically, critics replaced discus-
sion of the remarkably innovative formal aspects of her poetry with references to her “suicide
sisters,” including Antigone, Electra, Emily Dickinson, and Virginia Woolf.
Of these, Sylvia Plath looms largest.7 Critics were quick to note that they share certain bio-
graphical details (both lost their fathers as young girls; both underwent electro-shock therapy),
and Rosselli was familiar with Plath’s life and works: she translated Plath; she frequently named
Plath as one of the greatest American poets,8 and she argued for a close study of Plath’s poetry
as a way to understand Plath’s suicide.9 These similarities, taken with the suicide date, mean that
according to the canonical reading, Rosselli’s suicide was deliberately enacted on the anniver-
sary of Plath’s as an act of identification and of commemoration. Thus, although there was no
shortage of illustrious predecessors in Rosselli’s family, critics nevertheless pointed to a new
matrilineal inheritance established at her death. After her suicide, she was not so much Carlo’s
daughter as a second Lady Lazarus, following Plath’s eloquent mortuary poem about suicide
attempts.10
Whether or not Rosselli intended to die on the anniversary of Plath’s death is of less import-
ance to me than the intention attributed to the date and the two-fold symbolic role it bestows
upon Plath. First, Plath threatens to eclipse Carlo Rosselli’s position in her posthumous biog-
raphy. And second, Plath reframes Rosselli’s relationship with her mother and grandmother.
The identification of Plath as Rosselli’s antecedent reflects a substitution of the maternal bodies
analogous to the substitution of her father as object of commemoration. But the apparent
disavowal of Pincherle Moravia Rosselli and of Cave effectively enforces them as structuring
absences. Thus, in addition to Plath’s posthumous female filiation, their displaced matrilineality
is, paradoxically, bound up in a masculinist historicizing of her work, manifest in readings of
Rosselli’s poetry as indelibly and exclusively shaped by the forces of history. Moreover, this his-
toricizing serves the dual function of reinserting her into the Italian national narrative –making
her suicide into a tragic reminder of Italy’s glorious Resistance history –and allowing the reader
to avoid confronting what is most unsettling about her works, namely, the ways they communi-
cate with Rosselli’s intermittent mental instability.This subsuming of madness under the mantle
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Rosselli’s War Variations
of history is nowhere more visible than in the Fascist-era police files on her father held in the
central state archives in Rome, where she is depicted in the family correspondence as both an
illustrious Rosselli and a pathologized Cave.
Rosselli’s official position in history, then, is bound up from birth with the question of her
psychopathology. Its historicization –her madness inscribed in the national archive –means
that rather than opposite ends of a spectrum, these two ends meet to form a loop: her historical
position leads to madness, madness leads to the radical alterity of her poetry, and these in turn
are reflected in her historical position.
As Carlo’s daughter, she is all history, a pure product of Western Europe in the late 20th
century, such that everything from her ability to write in three languages to her penchant for
plosives and her confessional style are symptoms of the historical trauma visited upon her tragic
generation.11 Read as Plath’s sister, critics evince a pathologizing concern with her aesthetics
typical of critical interventions around disability and an example of Ato Quayson’s observation
that “disability is an ‘excessive’ sign that invites interpretation” (14). Rosselli’s work is very open-
handed about its inspirations, and discourses of biological, literary, and linguistic engenderment
abound in her writings. But after her suicide, apart from Sylvia Plath, her writerly identity was
understood to be nearly devoid of literary antecedents. Indeed, some of her most important
critics considered her work to be insistent in its disavowal of any possible literary kinships.12
Although these two interpretive tendencies are often in conflict, their effect in the context of
discussions of her suicide are similar: they reduce the motive of her death to a single, impersonal
master narrative. In the case of an interpretive framework organized around Rosselli’s aesthetics
of singularity, her death is of a piece with her status as an anomaly; and in the case of the his-
toricizing reading, her mental illness and suicide are seen as collateral damage from the war. In
contrast, if we read Rosselli beyond the historicist-aesthetic continuum, what emerges is in fact
a powerful poetic engagement with the twin traumas of violence and loss. In the pages that
follow, I take a different tack, attempting to move beyond this critical short-circuit to see what
happens when we attend carefully to representations of the body and embodied experience (a
reading facilitated by but not exclusive to the critical modalities typical of disability studies) –
when disability, and the way it has been reduced to a form of shorthand in the critical emphasis
on suicide, is not a “hermeneutical impasse” (Quayson 52). Of particular interest to me here will
be the body as a source of sexual pleasure.
Variazioni belliche13
Elsewhere, I examine Rosselli’s English- language poetry collection entitled Sleep (written
1953–1966).14 In my reading, Sleep offers a poetic commentary on her critical reception,
thereby establishing the poet not only as someone to be read but also reader of her readers.
It is precisely this identification of poetic subject and object that has pathologized Rosselli’s
writings (and the poet herself, by extension), stripping them bare of their genealogical roots and
imposing a discourse of disease alongside that of irreducible alterity. This plays out in her criti-
cism as the attribution to the poems of a kind of unnatural scientific phenomenology, of which
Pasolini’s widely cited introduction of Amelia Rosselli’s poetry in Menabò is exemplary. Using
terms such as “tumors” and “atomic explosions,” Pasolini depicts Rosselli’s poetry as something
gone horribly wrong in the laboratory, an example of what David Mitchell and Sharon Snyder
call “narrative prosthesis” (20). The idea is that there is no narrative without the catalyst of dis-
ability, defined as excess, refusal to comply or conform, something or someone undisciplined to
propel and structure the story (Mitchell and Snyder 16). Here we see that alongside a depend-
ency on disability within narrative is an analogous dependency within critical discourse, such
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that the pathologized poet becomes a similarly unwieldy, noncompliant, nonnormative subject.
It is precisely this discourse of non-normativity that motivates the resultant critical narratives,
which typically stress difference, deviance, and only potential recuperation or repair and, more
relevantly, strip Rosselli of any agency as the enunciating subject.
The canonical reading of another of Rosselli’s texts, the 1964 poetry collection Variazioni
belliche or War Variations, illustrates the opposing tendency –not to aestheticize but to historize,
that is, to privilege the text’s mimetic referentiality: in other words, to see this as a book, as the
title suggests, about war. It was her first published collection, and it is typically considered to be
a lengthy meditation on the political legacy of her male kin –grist for the historicizing mill.
In contrast, I would like to argue that alongside the historically inflected reading, in which the
variations are, precisely, on the theme of war, there is another possible reading, in which armed
conflict gives way to conflicts of an economy of desire, in which aggression is productive, not
destructive.The collection displays an increasing concern with sexuality, articulated through the
double-edged lexicon of the body either preparing for war, engaged in battle, or recovering
from it. Variazioni belliche redirects what are conventionally perceived as outward, historical
referents, so that the weapons to which her poetry refers are within her own body. Thus, this is,
in a certain sense, an analogous move to the one I observed in Sleep –the reappropriation of the
gaze that takes place in that volume is, in Variazioni belliche, expressed as a reappropriation of the
body. No longer an archival document, or a text that argues for the irrelevance of the body to
one’s “true” identity, as in her grandmother’s play Anima, War Variations has as its core concern
the body’s reinscription with the language of joy. Or, as Shoshana Felman describes in Writing
and Madness (Literature/Philosophy/Psychoanalysis) (2003), “[p]‌oetry becomes a way of knowing the
body without the intervention of consciousness, communicating directly with the very body of
language” (266).
I use the expression “armed conflict” to get at the copresence of discourses of sexuality
and of warfare within her poetry: arms are for killing, but also (as the bumper sticker says)
arms are for hugging. It is here that we might differentiate Rosselli from Plath, whose opus is
equally concerned with sex and violence, as well as with sexual violence, often inflected with
a lethal potential not typical of Rosselli. Think, for example, of Plath’s “Strumpet Song” from
The Colossus (1960):
Time comes round for that foul slut: Mere bruit of her takes our street/Until every
man, Red, pale or dark, Veers to her slouch/Mark, I cry, that mouth/Made to do
violence on,/That seamed face/Askew with blotch, dint, scar/Struck by each dour
year. (51)
For both women, love is a battlefield, but only for the Italian is defeat as satisfying as victory.15
Where Plath’s strumpet invokes sex as an externalized stand-in for the partly covert desire for
self-violence, Rosselli’s poetic subject overtly welcomes her vanquishing; indeed, her own rav-
ishment is the stated goal.
It is not my assertion that these poems are not about war. On the contrary, there is plenty of
evidence that Rosselli is also concerned with the representation of actual casualties of real wars,
the most famous of which is perhaps her “In preda ad uno shock violentissimo”: a poem about
the 1944 massacre of 335 Italians at the Ardeatine Caves outside of Rome as a retaliation for
partisan-inflicted Nazi casualties. But amongst these there are also interspersed figures whose
death is instead metaphorical.The predominance of sex over war is evident both at the thematic
level –beds abound in this collection, and these are put to varied uses –and in the deployment
of multivalent images such as that of the figure reclining, either in an invitation to love, or in
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position of post-coital volupté, as much as in the pose of death throes. And on some level, critics
seem aware of this. Consider, as an example, Pier Vincenzo Mengaldo’s much-touted inclusion
of Rosselli’s work in his anthology (Poeti italiani del novecento), which reads as a veiled homage
to écriture feminine:16
la poesia è qui vissuta anzitutto come abbandono al flusso buio e labirintico della
vita psichica e dell’immaginario, producendo una sorta di simultaneità e ubiquità
della rappresentazione, e l’abolizione di ogni confine fra interno ed esterno, privato e
pubblico-sociale (here poetry is lived first and foremost as an abandonment to the dark
and labyrinthine flux of psychic life and of the imaginary, producing a kind of simul-
taneity and ubiquity of representation, and the abolition of every boundary between
internal and external, private and social-public). (995)
Alongside the psychic assessment here is a submerged discourse that first genders the poet’s
body; and second, codes it as a kind of linguistic Kristevan abject: what should have remained
inside the tightly swaddled, laminar flow of poetic language has given way to a turbulence (a
dark and labyrinthine flux) that threatens to overflow its channels and engulf the reader. At
stake here, then, is arguably something other than Rosselli’s language. Equally dangerous, it
seems, is the way that language invokes the poet herself as a situated subject (the Mobius strip of
Rosselli’s psychopathology to which I referred earlier): her historical position leads to madness,
which leads to an abject aesthetics, and these in turn reproduce her historical position.
Let me illustrate by focusing on the image of pearls, which emerge at various points
throughout the text and serve as nodal points around which, in Lucia Re’s words, war’s “meta-
physical proportions, as a structural condition of being and human existence” are quilted
together with their specular opposite, love (Rosselli 2005, 17). These first appear in the dual
form of pearls strung together, and of the interlocutor’s neck, itself pearly. Here is the poem in
its entirety:17
E l’albeggiare sarà /quella fila di perle tu porti ogn’ora slacciato sul tuo perleo collo,
smagrito, o! le /ossa camuffate, che premono, nel eccitato sconvolto riso. E tu le bende
porterai su quei tendini /spezzati dalla furia di amare/giocondamente. (And the
dawning will be that string of pearls you wear always untied on your pearly thinning
neck, o! the muffled bones that press in the excited dazed laughter. And you will wear
bandages on those tendons snapped by the fury of loving joyfully.
(Roselli 2005, 32–33)
First, let’s note here the difference between the bleak, dusky brutality we noticed in Plath,
whose strumpet has “That seamed face/Askew with blotch, dint, scar/Struck by each dour
year,” in sharp contrast with the bright, ecstatic dawning of Rosselli’s figure. Plath, of course, is
describing the strumpet of her poem’s title; less clear is the subject of Rosselli’s poem. We see
here, as elsewhere in Rosselli’s poetry, the sliding –or better yet, the intermittent superimpos-
ition –of the speaking subject, the io, and the interlocutor, the tu, such that the neck and the
necklace may both belong to the speaker, or possibly to the speaker and her lover, respectively.
The gender switching of speaking subject is typical of Rosselli’s poetry in this collection and
elsewhere (her nouns and adjectives, too, often change gender). Here, the attribution of beads
or pearls, similarly, shifts between the sexes so that they belong to or issue from both male and
female bodies. This raises the possibility that the pearl necklace is a reference to the form of
erotic play by the same name, linked semantically to a phallic image a few pages later: “la tua
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ascia di perle di amore” [your pearly axe of love] (50). Like her other poetry collections –Sleep
chief among them –Variazioni belliche is marked by a tendency to lexical iteration and analepsis,
that is, to repetitions and imbrication of syllables, words and phrases, which function to create a
sort of snowball effect of meanings as the same phrase is repeated and built upon.With Varizioni
belliche we may extend these observations beyond the economy of the individual poems, since
one of Rosselli’s poetic techniques involves intermittently reiterating phrases or series of phrases
that interlink with one another across the collection –for example, the poem Contiamo infiniti
cadaveri (We count endless corpses [104]) is followed immediately by Contiamo infiniti morti! (We
count endless dead! [106]), and a close variant in another collection, Documento (1966–1973),
we see Contare i prigionieri (To count the prisoners [67]). The effect of such a technique is two-
fold. The polysemic, stratified construction of sound, word, and imagery within and across the
poems creates a tight network of multiple meanings, a hypertext, of meanings superimposed
one upon the other in such a way that interpretation is potentially infinite and perpetually
indeterminate. In Variazioni belliche, analogous examples of this structure of return or echo are
readily visible when we range across the span of the text. For example, the hermeneutically
mutual reinforcement of the close juxtaposition of the pearl necklace and the pearly axe of
love that we saw just now reverses itself in another pairing. This time, the pearl appears in the
form of a forehead pearly or beaded with sweat from physical battle of consumerist capitalism
(Rosselli 2005, 142), which anticipates its ideological opposite a few pages later in a poem rife
with images of Communism (Rosselli 2005, 150).
But pearls or beads are equally central as figurative echo in the pearly forehead upon which
the speaking subject’s eye alights during lovemaking, suspended over her like a starry sky:
Se dalle tue protese braccia scorgevo un’altra irrequietudine/se dal tuo amore tutti i
lumi si spegnevano: se dall’amore nasceva disordine e immoralità, se per il tuo occhio
lucido e la tua fronte perlata io scorgevo un altro cielo ed un’altra luce nel cielo ed
i colori farsi più vividi: se dal tuo amare le amare ozie della vita scorgevo in me un
difetto allora correvo ai ripari (If from your outstretched arms I spotted another rest-
lessness/if from your love all the lights were turned off; if from love disorder and
immorality were born; if for your sparkling eye and your pearly forehead I spotted
another sky and another light in the sky and the colors getting brighter; if from your
loving the bitter laziness of life I spotted a flaw in me then I ran for shelter).
(Rosselli 2005, 218)
Here physical love leads to a kind of post-coital limbo or purgatory, a state entered into in
another poem in which the figure of Antigone (who peoples Rosselli’s works with some regu-
larity) watches over not the dead and unburied body of the brother but the detumescent
member of the lover, figured variously as a dying dragon and a salami vendor (her work is not
without humor!). Further iterations of the phallus-pearl re-dimension mortal armed combat
as interiorized palace intrigue. In I tuoi occhi di ceramica (Rosselli 2005, 350), the beloved body
on its “throne of meat and desperation” (sul tuo trono di viande e di disperazioni [Rosselli
2005, 350]) at last finds peace, “buried by now in my long and triumphant arms of love and lust
queen of the night and stars” (seppellito oramai nelle mie lunghe braccia trionfanti d’amore e
di lussuria regina della notte e delle stelle) (Rosselli 2005, 350). Finally, pearls are invoked along
with Jesus in a military tank (304), proleptically anticipating the poem a few pages later in which
the poetic I counts pearls (“contavo perle”) as she ambivalently declares rebirth (Colma di ansie
tributarie rinascevo a miglior vita –Full of tributary anxieties I was reborn to a better life [322]).
It is here that the collection takes a decided turn for the happier: the declaration is followed
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soon after by a group of approximately 20 poems dedicated to love, both erotic and platonic. It
would be oversimplifying to say that this last group of poems is unvarnished in its exaltation of
love –its message is, in fact, more ambivalent than that –but the overall sensation upon reading
them in the order in which they are presented is that they represent a kind of emotional climax
driven by the twin engines of physical desire and compromise.
There are myriad other poems that support my assertion about the erotic economy of this
collection’s concerns. If as the saying goes, love is war, then so, apparently, is sex: hence the
semantic proximity of carnage and the carnal. Thus, Variazioni belliche are at once war variations
and, as Lucia Re notes, following Rosselli’s predilection for linguistic interferences, variations
on its antithesis, il bello –the beautiful (Rosselli 2005, 13). Not organized violence, but rather
love is depicted by Rosselli as the undoing of all that is organized or rational, including language
itself. Moving away from readings of Variazioni belliche that focus closely on the poet’s position
within the nexus of her father’s, grandmother’s, and Plath’s relations to History –and, as we
saw, on a psychopathology written shorthand as a supposed singularity of aesthetics –permits
a reading that recuperation of the weapon as that object which is proper as much to pleasure
as it is to pain.
Writing and history

What are the stakes of this revision? The conflicts between public and private life, and between
metaphor (pearls, salami, dragons) and mimesis (Ardeatine caves, bombs, infinite cadavers) at
odds with each other in this text, would seem to support the impulse to read Variazioni belliche
through the key of Rosselli’s death and, specifically, to understand her particular use of lan-
guage as a symptom of historical trauma as it is inscribed upon and introjected by Rosselli, and
consequently invalidated by her death. What we see, in other words, is the critical inversion of
the terms of Trauerarbeit: in that reading, Rosselli does not turn trauma into text, but text into
trauma. It is an inversion that always already takes into account her suicide. I contend that the
terms on which her collection was received indicate that for some readers, the historicizing crit-
ical discourse serves as a kind of fig leaf with which to veil the possibly discomfiting spectacle of
female sexuality in a pathologized subject. Hence the general critical aversion to an eroticized
reading of this text, and of the disabled subject more broadly: the practices of sex and the project
of Trauerarbeit are already hard to reconcile; in the case of mental illness, it is almost too much
to face the two together. But this position –that Rosselli’s suicide is evidence of the failure of
writing as a form of Trauerarbeit – is given the lie by both the fact of her writing, and the use
to which she puts it: if she can make hay from the putative trauma of her historical position,
the sun must still be shining. What Felman calls madness –“the translation of oneself –into the
otherness of languages” (19) –here, is thus also its own antidote.
I would argue, then, that when we bracket, however temporarily, the poet’s suicide but not her
oeuvre’s consistent engagement with disability, and tend carefully to the writings, Rosselli’s lit-
eral and figurative embodiment of historical trauma becomes, too, the embodiment of recovery.
And the “strangeness” of writing is by this logic born not from an exigency of illness but of
identity –the translation of oneself –into a form with which to establish kinships of preference
(the anima of her grandmother’s play?), and not necessarily of birth. This writerly recovery
comprises her genealogy even more than the historical players themselves, if we consider that
the writings last long after their creators have ceased to exist. Thus, Rosselli’s writing challenges
the critical urge to reconstitute Rosselli as a victim of the forces of history, even while it
recognizes the roots of a history that is both of, and from, the dead. Rosselli’s writings provoke
the feelings of strangeness that is proper to madness; that is proper to literature. Its resistance to
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the where (reader and author as competing sites for the production of meaning) and to the who
(essentialism and constructivism, as competing paradigms of conceiving the foundation of the
subject) of interpretation implicates the fundamental disavowal upon which all subjectivity is
constituted.18 Moreover, Rosselli’s text thus unbinds or calls into question the coherence of the
ego as well as of the authorities of Logos, Law, and Father, not in order to supplant them with a
strictly feminine genealogy or a subject fortified by her own constituting disavowal, but in order
to point out its utter, potentially devastating precariousness, thus articulated by Rosselli: “nor
do I want your interpretation, having none myself ” (Rosselli 1992, 124). In this way, the impos-
ition of whatever forms of authority from which she might have sought liberation –including
history –continues, unabated, opening up the infinite next hermeneutical world.19
Notes
1 See, for example, Silvia De March.
2 See her Epistolario familiare. Carlo, Nello Rosselli e la madre (1914–1937) (Sugar Co., 1979).
3 For a full bibliography of Pincherle Rosselli’s works, see pages 27–30 of her Memorie.
4 Emilio Lussu once compared Amelia Pincherle Rosselli to Cornelia. Lussu, Emilio, ‘Carlo Rosselli’ in
GL 25 June 1937. Cited in Pugliese p. 92.
5 On Amelia Pincherle Rosselli, see Aldo Rosselli’s reconstruction of her early years.
6 Amelia Pincherle Rosselli, Anima. Dramma in tre atti, ed. Natalia Costa Zalessow (Salerno Editore, 1997).
7 See Baldacci p. 141 as well as Emmanuela Tandello’s discussion of Plath’s 1959 poem “Electra on Azalea
Path,” in which Plath confronts her father’s tomb for the first time, is apposite as well for the way it
imbricates the figures of Electra, Plath, Rosselli, and their fathers. Tandello, Amelia Rosselli. La fanciulla
e l’infinito (Donzelli, 2007), pp. 39–42.
8 She also mentions John Berryman on a number of occasions in her list of “all-time greats.”
9 See Baldacci pp. 140–143 on her engagements in 1975, 1985, and 1991 with Plath.
10 Sylvia Plath, “Lady Lazarus,” in Ariel, Harper Collins Perennial Classics, 1999, pp. 6–9.
11 Rosselli herself contributed to this assessment when she refuted the epithet “cosmopolitan” attributed
to her by Pasolini in the 1963 Menabò essay with which he introduced her early poems (pp. 68–
69): “Noi non eravamo dei cosmopoliti; eravamo dei rifugiati” (We weren’t cosmopolitan; we were
refugees). In Caputo, p. 9. Again, see Baldacci, Amelia Rosselli, especially the section entitled “Una
vita sotto assedio” pp. 10–16; 25; 26; 35. For a more complex view, see Mario Moroni’s chapter on
Rosselli as well as Emmanuela Tandello who begins her Amelia Rosselli: La fanciulla e l’infinito with not
the usual two but four deaths: her father’s and uncle’s, her mother’s, and Rocco Scotellaro’s. Attilio
Manzi redimensions her work within the varying sites of literal and figurative exile (pp. 339–345).
See also Silvia De March, pp. 15–19. Manuela Manera, in contrast, refutes the poet’s reduction to her
biographical data when she says, à propos Rosselli’s trilinguism, “le commistioni linguistiche sono non
inevitabile traccia di inalienabile condizione biografica, ma ricercata scelta di adeguatezza espressiva”
(the linguistic mixtures are not the inevitable trace of an inalienable biographic condition, but the
highly-sought choice of expressive adequacy [267]).
12 Her work is “per certi versi unica, senza pari nel panorama della poesia italiana del secondo Novecento”
(In some ways unique, without peer in the panorama of Italian poetry of the late 20th century).
Baldacci, p. 3. Andrea Zanzotto remarks, “Improbabili o nulla i suoi effettivi rapporti con scuole o
gruppi” (unlikely or nonexistent [are] her effective relations with schools or groups [of poetry] [11]).
For Pier Vincenzo Mengaldo, Rosselli’s poetry “resta un fenomeno in sostanza unico nel panorama
letterario italiano” (remains a substantially unique phenomenon in the Italian literary panorama [994]).
For Ann Snodgrass, Rosselli’s supposed uniqueness is tied up in questions of gender. For a discussion of
Italian poetry anthologies, see Lucia Re, “(De)Constructing the Canon: The Agon of the Anthologies
on the Scene of Modern Italian Poetry,” The Modern Language Review 87.3 (1992): 585–602.
13 Amelia Rosselli, Variazioni belliche (Milano: Garzanti, 1964). All references in this paper are to War
Variations.Translated and edited by Lucia Re and Paul Vangeli (Los Angeles: Green Integer Press, 2005).
14 Elizabeth Leake, After Words. Suicide and Authorship in 20th Century Italy (Toronto: University of Toronto
Press, 2011).
15 See “Medusa” (Ariel 1965), and “Strumpet Song,”“The Faun,” and “Snakecharmer” (The Colossus, 1960).
16 For a discussion of Italian poetry anthologies, see Lucia Re, “(De)Constructing the Canon.”
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17 The translation of the poem is theirs.

18 See Octave Mannoni, “Je sais bien mais quand même…” in Clefs pour l’Imaginaire ou l’Autre Scène
(Paris: Seuil, 1969).
19 Translations are my own unless otherwise indicated. Portions of this paper were published in “ ‘Nor do
I want your interpretation’: Suicide, Surrealism, and the Site of Illegibility in Amelia Rosselli’s Sleep,”
Romanic Review, vol. 97, no.3–4, May–Nov 2006: 445–459.
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De March, Silvia. Amelia Rosselli tra poesia e storia. Naples: L’ancora del Mediterraneo, 2006.
Felman, Shoshana. Writing and Madness (Literature/Philosophy/Psychoanalysis). Translated by Martha Noel
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Leake, Elizabeth. After Words. Suicide and Authorship in 20th Century Italy. Toronto: University of Toronto
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Manera, Manuela. “L’ydioma tripharium di Amelia Rosselli. Ricognizioni linguistiche.” Lingua e stile,
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Rosselli, Aldo. La famiglia Rosselli: Una tragedia italiana. Milan: Leonardo Paperback, 1992.
Rosselli, Amelia. Variazioni belliche. Milan: Garzanti, 1964.
Rosselli, Amelia. Documento (1966–1973). Milan: Garzanti, 1976.
Rosselli, Amelia. Epistolario familiare. Carlo, Nello Rosselli e la madre (1914-193). Milan: Sugar Co., 1979.
Rosselli, Amelia. Sleep: Poesie in inglese. Emmanuela Tandello. Milan: Garzanti Editore, 1992.
Rosselli, Amelia. War Variations. Translated and edited by Lucia Re and Paul Vangeli. Los Angeles: Green
Integer Press, 2005.
Rosselli, Amelia Pincherle. Anima. Dramma in tre atti. Edited by Natalia Costa Zalessow. Rome: Salerno
Editore, 1997.
Snodgrass, Ann. Knowing Noise.The English Poems of Amelia Rosselli. New York: Peter Lang, 2001.
Tandello, Emmanuela. Amelia Rosselli. La fanciulla e l’infinito. Rome: Donzelli, 2007.
Zanzotto, Andrea. “Care rischiose parole sibylline,” in Corriere della Sera, July 18, 1976.
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18
GETTING THERE
Pain poetics and Canadian literature
Shane Neilson
Pain has been memorably covered by scholars like Tobin Siebers (“In the Name of Pain”) and
Alison Patsavas (who has contributed a “cripistimology of pain”) in different contexts within dis-
ability studies, yet pain also remains something of an outlier to the disability poetics movement.
Petra Kuppers’s “Towards a Rhizomatic Model of Disability: Poetry, Performance, and Touch”
from 2009 is an early Western attempt to articulate a poetics of disability with pain as a subcat-
egory, drawing on Deleuzoguattarian concepts in order to “hold a wide variety of experiences
and structured positions in moments of precarious productive imbalance” (223). This Deleuzian
approach has been taken up by other disability scholars, including Margrit Shildrick, yet the
results are fluid and destabilizing readings that (purposely) don’t cohere but rather proceed
rhizomatically. Though I acknowledge the value of the Deleuzian approach, I wish to bring
forward the essential intersubjectivity of pain as a productive theoretical basis for engagement.
This chapter is, additionally, an attempt to incrementally bring pain more into the fold of poetics.
A final organizing vector is nation, for I feel the Canadian context lags far behind the American
one in terms of the prominence of disability justice issues within the Canadian literature (dis)
community. (To name just one example, Canada has yet to have produced a disability poetics
anthology.) Because I cannot bring forth a thorough canonical exploration of Canadian poetry
using the subject of pain, I have decided to use poems written coincident with the rise of dis-
ability studies as a field –meaning from the 1960s on. I also restrict my archive chronologically
because this is the period coinciding with the rise of Canadian literary nationalism and the devel-
opment of what is regarded by some as a distinctively “Canadian” literature. I write from the
subject position of a marginalized physician who self-identifies as disabled, but also as someone
who does not have the lived experience of chronic pain. I trust that others will build on this
preliminary work which is bipartite: I begin by considering the structural preferences as to why
pain has largely eluded a poetics to date –it is important to recognize the barriers erected against
such a poetics –and move to a reading of pain through the lens of intersubjectivity.
A Levinasian intersubjectivity (in brief)

In “Scars in disability culture poetry: towards connection,” Kuppers suggests that “[s]‌cars, pain,
wounds and the places where they are born are strong subjects in crip poetry, as they both
embody and make available to discourse the knitting together of meaning out of breath, flesh
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and language…scars as connections to more than self can open up to another magic, another
hope” (141). Rather than marks of destruction, Kuppers invests scars as sites of connection
and “production” that “are not signs of negativity and loss or reminders of victimhood” (148).
Kuppers is careful to acknowledge that such scars also reflect “the very real pain that many
disabled people live through both physically and in their encounters with institutions” (148)
but for the purposes of this chapter, Kuppers’s theorization of scars as not necessarily nega-
tive metaphors of connection connects with the work of Emmanuel Levinas and thereby to
intersubjectivity.
In his well-known essay “Useless Suffering” (1982), Emmanuel Levinas calls suffering a
“passivity,” “precisely an evil,” and a “pure undergoing” (92). Initially proposing that suffering
is “intrinsically useless” and “for nothing,” Levinas focuses on intolerable situations by
mentioning “intolerable lumbagos” and “the tortures experienced by certain patients stricken
with malignant tumours” (93). Levinas ventilates the concept of pain as hell-without-exit
by suggesting the actual purpose of pain is to present the “possibility of a half opening, and
more precisely, the possibility that wherever a moan, a cry, a groan or a sign happen there is
the original call for aid, for curative help, for help from the other ego whose alterity, whose
exteriority promises salvation” (93). “The other” becomes audience, promise of relief, and
chief beneficent of the call because “the other” is sought for the benefit of “the other.”
Levinas writes that “pure suffering, which is intrinsically senseless and condemned to itself
with no way out” (93) can be remediated when “a beyond appears in the form of the inter-
human” (94). By virtue of being observed in another, suffering finds its real subject and
thereby becomes the imperative of empathy. Inter-human connectivity is the consequence of
Levinas’s theorized “bond of human subjectivity” (94). In a metaphoric sense, pain becomes
Kuppers’s “connective tissue” (142) between human beings. “Intersubjectivity” is defined by
the Oxford Companion to Philosophy as:
the status of being somehow accessible to at least two (usually all, in principle) minds
or “subjectivities”. It thus implies that there is some sort of communication between
those minds; which in turn implies that each communicating mind is aware not only of
the existence of the other but also of its intention to convey information to the other.
The idea, for theorists, is that if subjective processes can be brought into agreement,
then perhaps that is as good as the (unattainable?) status of being objective – completely
independent of subjectivity. (n. pag)
Habermas approaches a definition of intersubjectivity with the following:
the term “intersubjective” no longer refers to the result of an observed convergence

of thoughts or representations of various persons, but to the prior commonality of a
linguistic pre understanding or horizon of the lifeworld –which, from the perspective
of the participants themselves, is presupposed –within which the members of com-
munication community find themselves before they reach an understanding with one
another about something in the world. (355–6)
For the purposes of my analysis, the “agreement” mentioned by the Oxford Companion and
Habermas’s “prior commonality” can be metaphorized as “meeting” –two subjectivities
interacting to create a possible constructive zone where pain is apprehended and possibly
empathized with.This is a more complex method than seeing pain in metaphor only, amounting
to “reading pain into” any text in which there is a physical or affective aversive phenomenon.
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In the second part of this chapter, I will “read pain into” various Canadian poems in order to
demonstrate the utility of the method; but for the moment, I move on to document the struc-
tural problems a disability poetics faces on the way to construction.
Impediments to a disability poetics: narrative preferences,

body as formal metaphor
The preference for narrative within disability studies itself –and perhaps more broadly, the privilege
of prose over poetry as a substrate for scholarly analysis –is one of the reasons why pain lacks a
poetics within the field. Michael Bérubé, for example, has written that “disability demands a story”
(43). G. Thomas Couser writes that “the scar, the limp, the missing limb, or the obvious prosthesis –
calls for a story” (457). By analysing narrative, disability studies critics have discovered several toxic
tropes that enter into mainstream stories involving disability –for example, the “supercrip” and the
“disabled villain” –but what can a study of poetry offer? Might establishing a poetics open up, as
Alice Hall wonders in Disability and Literature (2015), “a reconfigur[ing of] the ways in which we
think about the form of literary texts as well as their content” (13)? Lennard Davis maintains that
“When one speaks of disability…[it] immediately becomes part of a chronotope, a time-sequenced
narrative, embedded in a story” (304).This chapter explores what happens in poetry, which is often
achronological and not necessarily dependent upon time as an ordering principle. This remains
true in the Canadian context. As yet there is no study of Canadian literature that explores narrative
representations of pain, let alone the subcategory of poetic strategies to represent pain. Sally Chivers’s
chapter “Survival of the Fittest: CanLit and Disability” in the Oxford Handbook to Canadian Literature
offers a historical survey of representations of disability in Canadian literature. Chivers brings forth
canonical prose voices for analysis like Margaret Atwood,Timothy Findley,Anne Marie Macdonald,
Guy Vanderhaeghe, and Thomson Highway. Poetry is not considered in detail.
In addition to the field’s preference for narrative, another reason to account for the lack of a dis-
ability pain poetics might be what Mark Osteen has identified as the social model’s “neo-Cartesian
duality –its separation of body from mind, of impairment from disability” leading to inadequate
theorizations of pain as an experience (3). The irony should not be lost on those who have lived
experience of chronic pain, for the epistemology of biomedicine works the same way. For example,
Beauty Is a Verb: The New Poetry of Disability (2011), a seminal disability poetics anthology in the US,
states in its preface that poets with “a visible disability” were chosen according to a strict interpret-
ation of the “social model of disability” (Bartlett 15). If, as Patsavas argues, the “belief that all disabled
people experience pain and that all pain leads to suffering runs through popular discourses to create
entrenched ways of ‘knowing’ pain and disability” (203–4), it is strange that pain is often left out of
disability poetry anthologies. How else to resist and possibly renovate the familiar attitudes Patsavas
mentions, since they lead to such ironically observable harms?
A hierarchy is thus established in a formative anthology, though it is a hierarchy shared in
disability studies scholarship too. For example, in “Voice and Poetry,” the penultimate chapter in
Hall’s Literature and Disability (2016), the poets who come in for analysis have physical deficits
which manifest themselves in their poems. Hall’s chapter considers pathological processes that
somehow destabilize communication –like in the work of Norma Cole and the late Tomas
Transtromer, both of whom had strokes. Both poets problematize the concept of speech as the
venerated conduit or representative of thought, and in the case of Cole, delivery of her work
with speech deficits relating to the stroke productively displays speech as an altered conduit.
As Alice Hall writes in her analysis of the crip poetics of Jim Harris, such substrates “celebrate
disabled experience, and…explore the possibilities of the new poetic forms that are generated
from the perspectives of ‘abnormal’ bodies and minds” (156).
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The most obvious way to demonstrate such a point occurs by focusing on visibly embodied
conditions, as is the case in Beauty Is a Verb’s “Toward a New Language of Embodiment” chapter,
where experimental poets are included with the explicit rationale that “disability is manifested
directly through physical connection to the writing. Rather than explaining an individual story,
bodily condition is manifested through the form” (19). In a strange way, the ethic of destabilisa-
tion within crip poetics has become deterministic.
The trouble with a body-based disability aesthetics in the case of pain is that pain is a very
poor fit. The locus should be that of the body-mind. Consider Tobin Siebers’s materialist
conception of aesthetics in which the human body “is both the subject and object of aes-
thetic production” when in contact with the sensations of other bodies (Disability Aesthetics
1). Compared to the sensation of pain, bodies are relatively easy to represent in poems. It
is harder to create an aesthetics of what is immaterial, there being no direct-mapping or
confirmatory coordinates with which to verify representations in the real world. Yet the
real world is what crip poetics seems to prefer, and with justification. Jim Ferris’s sem-
inal essay “Crip Poetics, or How I Learned to Love the Limp” is quoted in Beauty Is a Verb
as follows: “Disability poetry can be recognized by several characteristics: a challenge to
stereotypes and an insistence on self-definition; foregrounding of the perspective of people
with disabilities; an emphasis on embodiment, especially atypical embodiment; and alter-
native techniques and poetics” (25). This sequence of elements reflects the field’s develop-
ment: first, the challenging of stereotypes; then an emphasis through representation of the
lived experiences of disabled persons in non-negative registers; then a demonstration of
“atypical embodiment” that in the literature seems to represent most of what is offered as a
poetics; and then a poetics.
Yet the work typically done on poetry in disability studies often focuses on form in that pre-
dictable way: form is juxtaposed or fused with body. (Deaf poet? Then ASL presents meaningful
formal possibilities for expression, etc.) On the one hand, these are important connections to
make. But on the other hand, to maintain that disrupted forms and dispersed forms are mean-
ingful embodiments when deployed by certain individuals with metaphorically-conceptually
corresponding impairments is obvious. Pain destabilizes such concretist assumptions. In this
light, the potentially meaningful embodiments of crip poetics might read as a gruesome latter-
day graft of physical form with poetic form. A final problematic is the fact that, as Sharon
L. Snyder explains in “Infinities of Forms: Disability Figures in Artistic Traditions,” “…a dis-
ability source will often anchor explanations for artistic origins even as it will seem to explain
away other motives” (174). What if the other motives are important to include in the poetics?
It is important to note that chronic pain is often not localizable in a pathophysiological sense
and can lack an inciting injury. Is the emphasis on the body a troublesome one for theorizing
pain experience in the disability studies context? Does pain adopt a recognizable form? What
is the place of pain?
Towards a poetics of pain: cultural trauma, location, agency

Using the Canadian nation’s metaphorical body of literature allows for inroads into a poetics
of pain outside the main hub of disability studies (America). Because of Canada’s vexed rela-
tionship with Indigenous peoples, this overview of Canadian pain poetics starts with brief
consideration of pain as it is metaphorized as cultural trauma, a fitting start not only because of
its chiming in with origins of the nation but also because the pain experienced by Indigenous
peoples as a result of colonialism lacks a concrete place in the body, just as chronic pain in bio-
medical terms lacks a concrete/discrete pathophysiological lesion. In other words, the habitual
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elusiveness of pain finds a metaphorical correspondent in the cultural trauma of Indigenous

persons –especially in terms of the destruction wrought by residential schools –as written out
in the work of many poets, including Louise Halfe (Burning in this Midnight Dream), Chris Bose
(Stone the Crow), and Jeannette Armstrong (Breath Tracks). Metaphors of healing and transcend-
ence abound in such works. Armand Garnett Ruffo, poet, academic, and member of the Ojibwe
nation, has written that cultural trauma is part of “the psyche” (3) but also that strength can be
drawn from collective pain. Ruffo’s poem “Power” makes this case well, asking in its first line
“From where does the Power come?” The answer is not given as “pain” straightaway; instead,
the answer is situated in the gaze of “old ones” who see power in a series of images:
in a moment of desert twilight

in a basket of slithering snakes,
lumbering in a white-tipped bear,
flying in a crow that speaks. (3)
That the knowledge of the location of power exists in elders is important: they are the ones
with the greatest exposure to pain, the longest witnessing. Pain is not just seen in animal
imagery –the elders also “see it in you” (7). This cultural transmission is an investment on the
part of the elders, who have historically witnessed trauma and who yet recognize strength in
those who come after. The power spoken of in the poem is something that requires caution –
after all, we are told to “Beware” (8) –it is a frightening power to endure. In a ground-shaking
moment for the Canadian nation, some key figures in Canadian media joked about creating
an “appropriation prize” (Fearon) for a writer who could best steal and repurpose cultural
tropes. The jest was made in response to a rising Indigenous power in the Canadian nation and
the increasingly effective resistance Indigenous voices are posing to others who wish to tell
Indigenous stories. In a moving and widely-heard interview on CBC radio that centred on the
“pain in [Wente’s] community” exacerbated by “hav[ing] to re-argue for our value as human
beings, on our own land,” Wente explained how responsibility and community create this kind
of power to preserve and protect:
I wish there were so many more stories written about Indigenous people. But those
stories come with responsibility. Indigenous people know this all too well, we are
beholden to our communities. When we say these things, we know exactly who will
hold us responsible. Who is that for non-Indigenous writers, when they don’t have
these connections to the community? Do they truly understand the reason that these
stories are sacred?
As Wente knows, colonial power takes. Using a voice with the power to name sufferers and
exterminate the speaker’s kin, Ruffo’s poem continues:
In the voice
that calls four times your name
when wife and children
are murdered. (3)
But it is also a power that comes from an internal voice, a survivalist power that exchanges
weaponry (bullet) for breath:
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Tells you
no bullet will harm you
(as none ever does)
as it breathes
into you. (3)
It is the weaponry that becomes organic in a scene of painlessness that is the poem’s con-
cluding moment of power: what maims and kills is made powerless to injure, demonstrating that
inherent to the destructive metaphors for pain is resistance to destruction.To modify Nietzsche,
what can hurt us can make us stronger –or as Wente said in his interview in a halting, breaking
voice: “If anything [the resistance to the appropriation prize] proves our strength as a commu-
nity and our endurance. Don’t mistake my emotion here, or my civility anywhere, as weakness.
This is our strength, this is me being in touch with my ancestors and feeling them sitting beside
me” (n. pag).
Ancient Greeks who visited the abaton knew that poetry is a source of healing. The same
principle is at work with the Inuit Traditional Song “Magic Words/Nakasuk,” a chant for the
healing of wounds:
You, like a ringed plover;

You, like a wild duck,
The skin’s surface here,
Full of wounds,
Full of cuts,
Go and patch it! (9)
Medicine in this poem is being levied as song. The poem remains in the zone of damage meta-
phor (wound) but the representational strategy is alternative in that the wound is foregrounded
in a framework of healing. Admittedly, this is but a step from the primary problem (of metaphors
of damage that are destructive) but the difference is significant: to deal in metaphor for a
moment, consider a sword. Alter the course of this sword slightly and it might not hit its mark;
a mother or a child could live from such a slight change. Furthermore, the containment of
wounds in a nurturing/convalescent framework is more positivist than the proliferation of
wounds in a war metaphor framework.
Trying to determine the bodily location of pain through listening to a patient history is, in
a medical sense, the point of taking a history. “Magic Words/Nakasuk” is precise, denoting a
“here” that is the place of injury. Locating pain is to be given a kind of power over that pain, an
understanding or grasp of it that is not confined to Levinas’s concept of pain as “pure under-
going” (92). Outside of extreme suffering, pain can be apprehended.This apprehension is a form
of mastery, limited but significant. Intersubjectivity changes the lens a little and makes the poem
less about mastery and more of a shared imbrication in which two or more persons interact for
the purposes of achieving cure and alleviating suffering. Pain is both localized on the body but
it is also somehow between two people.
With the nation appropriately localized as the site of genocide against Indigenous peoples,
I move on to consider bp Nichol’s prose poem “Sum of the Parts,” a poem that represents the
difficulty of locating pain from a patient’s perspective. Beginning with “So many things inside
me I am not in touch with. So many things I depend on that I never see” (234), Nichol’s poem
contends that the interiority of the body is, to someone without exposure to anatomy labs or
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Shane Neilson
operating suites, essentially a mystery. To the non-professional, the physical self is somehow
other: if you’re lucky, “you never get to meet” (234) the diseased body part, but luckiness means
you also don’t get to hear “the real organ music” that is “the harmony…the way different
organs play together, work, and that level beyond consciousness of which all consciousness is
composed, the real unconscious, the unseen” (234). If disorder forces the mixed benefit of cor-
poreality to the fore, unfortunately the “real organ music” during wellness is a song we both
depend on as we fail to apprehend it. If we can’t locate our organs when healthy, how can we
know them when we are not well? Is pain a true signal?
Nichol continues this melancholic interrogation by admitting that he can “do the research,
read the books” (234) but he can’t know his organs as a medical professional would. Nevertheless,
he conducts his own research using his own body because of ailments he faces. He moves to
two specific medical investigations in the final segments of “Sum of the Parts.” In the penulti-
mate segment, he undergoes a radioactive Iodine “thyroid scan” for a “goiter” (234). While on
the table, the speaker “think[s]‌about [his] thyroid” and feels his “nose itching” and also a “dry
throat” (235). After these relatively simple sensations, he suddenly becomes “aware” of his thy-
roid “tho I couldn’t see it” (235). It is this imaginative feeling-into process conducted during
a medical investigation representing the thyroid gland as radiograph that gives the speaker an
acquaintance with his organs on a visceral level.
Test results are a second-hand measure of knowing; a first-hand measure is an anatomic path-
ology result of biopsied flesh; but Nichol needs a mysterious knowledge that is “third hand.”
In the final segment, we move to pain as the means for third-hand knowledge: “After I threw
my back out I had more X-Rays. X-Rays of the lumbar sacrum region” (235). Nichol remains
worried about his ignorance of organ music: “You live your whole life making do with only
the reflections of certain parts, making do with simply the names of your inner organs, their
descriptions in books, while all around you are people who may actually have seen them, know
directly what you only glimpse third-hand” (235). He privileges the knowledge of “Doctors and
Nurses” and even goes so far as to resist metaphor and denigrate his personal knowledge when
writing of “blood flow” and “heart pulse,” a knowledge based in literature, by arguing “these
aren’t just metaphors you know these aren’t just similes. It is a discipline” (235).
And yet the poet is about to pull off a coup, which requires backing up to explain. In the
middle movement of the poem, he explains that reading in books won’t apprise him of his
individual anatomy, the parts of him that make Nichol uniquely Nichol. Medicine’s textbooks
“name the organs and the names are the same they’re not the same organs as the organs sitting
here inside me –the bpNichol liver, the bpNichol kidney” (234) and this failure seems to be
presented as Nichol’s. As a reader of mere books on anatomy, he can’t know his own organs…but
the same ignorance is possessed by medicine because medicine generalizes knowledge. Nichol
seeks the help of a doctor in this movement for an unexplained ailment and he is afraid that the
doctor might try to learn that specific “bp” knowledge about him, but this doesn’t happen.What
happens is the speaker-patient is told, “Collect yourself!” (234). Though delivered as imperious
command, the command is received as an instruction for the self to heal itself, to hear its organ
music, to listen and recalibrate the sum of its parts. The poem continues, “And you do. And he
doesn’t.Which is how you want things to be” (234). It is the self in this poem, without privileged
knowledge of anything other than the self, that is responsible for its own healing.
This key middle movement connects with the poem’s terminus in which the speaker, imme-
diately after insisting on the relative worthlessness of metaphor to the literary individual in the
face of concrete medical knowledge, maintains “We learn to see with the third eye, to listen
with the third ear, to touch the unknown with the third hand, to walk down the dark streets
in search of the hidden, the unseen” (235). Nichol provides a poem that is the literal “third
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language” hoped for by Jennifer Bartlett in Beauty Is a Verb when she describes the motivations
of the text as “look[ing] at poetry influenced by an alternate body and how this intersection
forms a third language” (15). Nichol’s “we” is not a medical we but rather a community using
the “third-hand glimpse,” a community that practices the real discipline of understanding out-
side of specific structures of knowledge like anatomy and physiology (235). It is this seeing,
listening, and touching of things unknown that reconstitutes the self. The difficulty inherent in
locating pain is that it occurs in individuals and, as per Scarry, to be in pain is to “have certainty”
and to observe someone in pain is to “have doubt” (13). In “The Sum of the Parts” the person
with the certainty of pain needs to determine a location for their suffering themselves, and
this certainty of pain is somehow derived from a “third-hand” understanding of “organ music”
when well. The “third-hand” is also, critically, an intersubjectivity arrived at between Nichol
and his health professional.
A consequence of locating pain is the opportunity to control pain itself, to become
the master of an injurious process. The conclusion to Ruffo’s “Power” works like that: the
body of the indigene becomes a neutralizing zone. A bullet enters, yet the unharmed body
reconfigures penetration as not assimilative or genocidal force but rather as itself superior
without malice, as organically incorporating the weapon within. There is agency in this act,
though there is a different kind of agency in Alden Nowlan’s “The Boil,” a poem that also
represents the bodily site of pain as wound (staying in the zone of damage) and describes
location with exactitude, the speaker’s “thumb /and forefinger /rolling tight” (544) against
the boil of the title. Nowlan’s poem builds on the idea of location-awareness as a kind
of knowing, and therefore power, by representing control through a deliberate interven-
tion: “then /forcing the spear /of twisted cloth /under /the ripe core /of the boil”
(544: 10–15). As an intervention, the “spear” exists in the realm of weaponry metaphor,
and subsequent lines of the poem persist in that mode by mentioning “prying” (544) and
“burning” (544). The purpose of the intervention is to be
at last
master
rather than
servant
of the pain. (544)
As Nowlan’s biographer Patrick Toner maintains, the poem is Nowlan’s attempt to “impose his
will on…time and place” (11). Lineation is reminiscent of William Carlos Williams’s “variable
foot,” suggesting a close attention to breath and a signaled awareness that the deployment of
words is enacting the procedure at hand. This intervention creates a paradox of a wound healed
by weapons. As the poem says, a wound made “clean” through deliberate action that, because of
control, allows the speaker of the poem to find “pleasure” in the experience (544).1
The overall procedural framework of the poem is not new, for any narrative or poem that
represents surgery and the instruments used during a procedure somehow represents the
phantom side of weaponry. Yet control over the process by the subject who finds physical
and psychological healing, not to mention pleasure, is a potent way to jar thinking away from
“pure undergoing” –this is a poem that doesn’t require an intersubjective model for positive
reframing, but I include it to provide a sufferer with agency in our culture of destructive agency
metaphors.
Literary activists renovate pain metaphor through agency. The Prince Edward Island-born
poet Milton Acorn was a committed socialist from the outset of his writing career. Acorn
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was a member of the radical Canadian Liberation Movement and a recent paper in Canadian
Literature acknowledges him as a “staunch labour-oriented people’s poet” (Schmaltz 96).Though
Acorn’s socialism is well-known, what is not is how he imbued a favourite symbol, the human
brain, with triple function: (1) to be the literal “target” of oppression, (2) to be the site where
oppression can be resisted, and (3) to be the place where both productive and destructive pain
are experienced as a result of (1) and (2).
“The Fights,” an early Acorn poem from his first full-length work, The Brain’s The Target
(1960), provides the title of the collection by starting with the emphatic line “What an elu-
sive target /the brain is!” On a basic representational level, the poem is a dramatization of a
boxing card:
Come to ringside, with two

experts in there! See each step or blow
pivoted…
See muscles wriggle, shine
in sweat like windshield rain. (17)
In a larger sense, “The Fights” is also an allegory for capitalism, reflecting that the two boxers
as targets “set up to be knocked down /for 25 dollars or a million” (17) according to a “game
of struggle” (18). The speaker exhorts the consumers of packaged violence not to watch a
“TV picture” (17) but rather to visit the event in person by “Com[ing] to ringside” (17: 17) to
witness the point of boxing: to subdue an opponent by serially striking the head.
Some lines later, the brain gains additional symbolic valency: more than the neural struc-
ture in an athlete’s head, the brain becomes a “target /with its hungers and code of honour”
(17). The diction suggests not just athletic “hungers and code” but also economic appetite and
consequent compromised morality that Acorn often covers in many of his other works. As part
of the economics of boxing, smaller cards must be held in “stinking dancehalls” (17) and “the
forums of small towns” (17) where “punches are cheaper” (17) –the bodies participating are
more eagerly damageable. Acorn advocates for something other than a systematized “game of
struggle” –the human condition –by writing, “We need something of its nature /but not this”
(18). The speaker knows what’s left of combatants is something “less than human” (18). With
the brain as its dominant symbol, “The Fights” makes a simple argument: man must reject eco-
nomic enslavement in order to be man.
Elsewhere, Acorn’s brain symbol is used, like the body in Ruffo’s “Power,” in a more com-
plex way: to present itself as indestructible because of its refusal to participate in an economy of
harm. “I’ve Tasted My Blood,” Acorn’s signature poem, begins,
If this brain’s over-tempered

consider that the fire was want
and the hammers were fists.
I’ve tasted my blood too much
to love what I was born to. (35)
Ruffo’s poem begins with elders who eventually apprise a “you” of power, but Acorn’s begins
with its speaker’s brain that, if supposedly “over-tempered,” is actually still able to absorb more
because the “fire was want” –somehow lacking. Though fists once struck this brain amidst a
poetic matrix of metalworking/industrial metaphors, the past harm was not absolute or even
effective since the result was the levying of a pain (“I’ve tasted my blood too much”) that Acorn
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rejects and agitates against: he refuses to “love” the social condition he is “born to.” This dec-
laration of dissidence echoes throughout the rest of the poem (and is eventually restated at its
end) as it moves on to document the domestic enslavement of the speaker’s mother and the
death of “playmates” in the Second World War (35). Moving from “The Fights” to “I’ve Tasted
My Blood,” the parameters for social dissent broaden.The speaker’s conditional If-brain (“If this
brain’s overtempered”) recognizes the brutal social circumstances he is born in; it is the same
brain that rejects those circumstances and demands relational repair.
Pain is implied in the previous two “brain” poems but is not directly stated. These concerns
with pain, socialism, and neurological symbols are also evident in Acorn’s non-canonical “Poem
With Fat Cats in the Background.” As can be gleaned from the title, this is a socially engaged
poem. It documents the speaker’s ideas about the relationship between poverty and charity,
beginning with a scene involving hobos: “Hungry men, their grins tight with embarrassment,
/move by clever steps to intercept me /on the spit-grey downtown streets” (49). Acorn lived
much of his life as the kind of hungry man he describes in the poem, living out of the Waverly
Inn in Toronto. This biographical fact is indirectly declared by the subsequent (and deliberately
ironic) lines, “With my wrinkled shoes, my coat ill-used and borrowed, /I wonder how they
know me” (49). Acorn describes the attempts of the “hungry men” to persuade him to give
them money. They use manipulative gambits to make him feel “the pain of knowledge” (49),
that “This is real…This is a man!” (49). The shared humanity of donor and receiver, of easy
reversal, that forms part of the required painful recognition.
What happens next in the poem is key: Acorn rejects the social contract of gratitude wherein
he is thanked for his donation. Though a “worried arithmetic’s blown out of [his] brain” –
meaning his mental calculations about the small amount of money he must subsist with, and
the possible metaphorically suicidal implications of the act in light of his already impecunious
circumstances –he nevertheless gives the hungry men his money. He refuses to “shake hands”
(49) with them because of intense identification with their plight, resenting being “[m]‌ade a
partner in Man’s indignity” (49) and wanting instead “nothing but a curse” as his reward (49).
Through a neurological symbol, social ills, and personal protest, “Poem With Fat Cats in the
Background” is a place where painful acknowledgements of complicity, and futility, but also
solidarity occur. In this broad territory somewhere is the location not just of pain, but also of
the obligation to care for one another that is based in intersubjectivity.
To close out the analysis, I turn to a direct engagement with pain as entity by Leah Lakshmi
Piepzna-Samarasinha, a self-identifying “queer, sick, and disabled nonbinary femme writer”
who transmutes the chronic pain of fibromyalgia into poetry in “Bad Road” (2017). The poem
begins,
you mean well, but

when I say I hurt when I say some part of
my body hurts and you say oh, did you do something?
I hear what did you do? As is, it’s your fault,
there’s cause and effect and there’s a simple
story, and if a + b = c we can fix it
fast.  (1–7)
An intersubjective matrix is created through a “you” and an “I” in dialogue. Piepzna-Samarasinha

immediately problematizes the idea of injury as precondition for pain as well as the biomedical
preference for the mechanical fix. For her, “there’s no simple story in this body.” Narrative is
not enough, as demonstrated by the remainder of the poem that achronologically metaphorizes
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the human body outside of familiar body-as-machine formulas and into body-as-affectively-
mixed-journey (“She is forty miles of perfect bad road”) that is less about outcome and more
about a process of becoming, a wisdom:
I love every jounce on this bad, bad

underfunded budget cut frost heave road
not everyone’s car can make it down;
you gotta know
how to drive it. (60–4)
Piepzna-Samarasinha situates her pain amidst a wider worldly dailiness and ongoing
indifference:
I could tell you I moved to brooklyn for love but there’s a lot of stairs here too
I could read you the particulate matter of the air, that they’re spraying for pesticides
today
that I ran out of the fish oil that greases my knee into smoothing,
and I don’t kno
–but does anyone want to hear all that?
The staying chant
the recitation
of everything that’s happening in my body, and their body,
and the park’s body, and on the subway huffing diesel and cigarettes. (25–35)
This is not a titanic pain of certainty that screams in negative metaphor, but rather a pain of
coexistence and recognition that all our individual stories are supernumerary and overflow
the small container of collectivity. “Bad Road” also posits pain as a natural phenomenon –“I
say I intimate with pain tides /This ground not steady!” (38–9) –that isn’t meant to be easy
or simple (“Why would it be?”). Piepzna-Samarasinha powerfully connects her current pain
to layers of a painful past: “Sometimes the place where my mama threw me into the wall at
three and broke my sacrum talks to me” (42–3). Such painful moments connect within the
poem to articulate a Whitmanian comprehensiveness of body: “Some days my ass leaks tidal
marsh, briny river /Some times everything everything /everything every thing” (46–8).
To generate a Poetics of Everything Pain is impossible. My poetics is necessarily partial, and
fills less of a need than poets like Piepzna-Samarasinha accomplishing the radical work of
reconfiguring pain experience. We need language called into being by technique, for we are
waiting in want of a useful means of expression, one that includes alternative embodiment
but also “everything /everything every thing” else, including intersubjectivity. Until then,
why not read poems and narratives as invocations for us to care for one another; why not see
our texts as the place of our pain, as pain offered as possible understanding? Why not sing
our verses to give care? Poems are the saving context for metaphors that poets will improve
in time.
Note
1 This suggests an erotics of pain that has yet to be fully understood, though David Morris’s chapter on
De Sade in The Culture of Pain has added to knowledge of the subject.
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Works cited
Acorn, Milton. “I’ve Tasted My Blood,” “Poem With Fat Cats in the Background,” and “The Fights.” In a
Springtime Instant. Oakville: Mosaic Press, 2012, pp.35, 49, 17.
Bartlett, Jennifer. “Preface.” Beauty Is a Verb: The New Poetry of Disability. El Paso: Cinco Puntos Press, 2011,
pp.15–17.
Bartlett, Jennifer, Sheila Black, and Michael Northen, editors. Beauty Is a Verb: The New Poetry of Disability.
El Paso: Cinco Puntos Press, 2011.
Bérubé, Michael. The Secret Life of Stories. New York: New York University Press, 2016.
Buchanan, Ian (ed.).“Poetics.” Oxford Dictionary of Critical Theory Online. Toronto: Oxford University
Press, 2015.
Chivers, Sally. “Survival of the Fittest: CanLit and Disability.” Oxford Handbook to Canadian Literature, edited
by Cynthia Sugars. New York: Oxford University Press, 2016.
Couser, G. Thomas. “Disability, Life Narrative, and Representation.” The Disability Studies Reader. 2nd
edition, edited by Lenard J. Davis. New York: Routledge, 2006, pp.399–404.
Davis, Lennard J. Enforcing Normalcy: Disability, Deafness, and the Body. New York: Verso, 1995.
Fearon, Emily. “High-profile Canadian journalists pledge to raise money for ‘appropriation Prize.’” Toronto
Star. 12 May 2017. www.thestar.com/news/gta/2017/05/12/high-profile-canadian-journalists-
pledge-to-raise-money-for-appropriation-prize.html.
Habermas, Jürgen. On the Pragmatics of Communication. Ed. Maeve Cooke. Cambridge, MA: MIT Press, 1998.
Hall, Alice. Literature and Disability. New York: Routledge, 2016.
Honderich, Ted (ed.). “Intersubjectivity.” Oxford Companion to Philosophy. 2nd edition. New York: Oxford
Kuppers, Petra. “Towards a Rhizomatic Model of Disability: Poetry, Performance, and Touch.” Journal of
Literary and Cultural Disability Studies, vol.3, no.3 (2009), pp.221–40.
Levinas, Emmanuel. “Useless Suffering.” Entre Nous: On Thinking-of-the-Other, trans. Michael B. Smith and
Barbara Harshav. New York: Columbia University Press, 1998, pp.91–101.
Moses, Daniel David, and Terry Goldie. “Magic Words/Nakasuk.” An Anthology of Native Literature in
English, 3rd edition. Toronto: Oxford University Press, 2005.
Nichol, bp. “Sum of the Parts.” The Alphabet Game: A bpNichol Reader. Ed. Darren Werschler and Lori
Emerson. Toronto: Coach House Books, 2007, pp.234–35.
Nowlan, Alden. “The Boil.” Alden Nowlan: Collected Poems, ed. Brian Bartlett. Fredericton: Goose Lane
Editions, 2017.
Osteen, Mark. “Autism and Representation: A Comprehensive Introduction.” Autism and Representation,
ed. Mark Osteen. New York: Routledge, 2007, pp.1–48.
Pastavas, Alison. “Recovering a Cripistemology of Pain: Leaky Bodies, Connective Tissue, and Feeling
Discourse.” Journal of Literary & Cultural Disability Studies, no.8, vol.2, 2014, pp.203–18.
Piepzna-Samarasinha, Leah Lakshmi. “Bad Road.” The Deaf Poets Society. www. deafpoetssociety.com/leah-
lakshmi-piepzna-samarasinha. Accessed 8 Sept. 2018.
Ruffo, Armand Garnett. “Power.” At Geronimo’s Grave. Regina: Coteau Books, 2001.
Scarry, Elaine. The Body in Pain: The Making and Unmaking of the World. New York: Oxford University
Press, 1985.
Schmaltz, Eric. “‘To Forget in a Body’: Mosaical Consciousness and Materialist Avant-Gardism in Bill
Bisset and Milton Acorn’s unpublished I Want to Tell You Love.” Canadian Literature, vol. 222, 2014,
pp.96–112.
Seibers, Tobin. Disability Aesthetics. Ann Arbor: University Michigan Press, 2010.
———. “In the Name of Pain.” Against Health: How Health Became the New Morality, ed. Jonathan M. Metzl
and Anna Kirkland. New York: New York University Press, 2010.
Shildrick, Margaret. Dangerous Discourses of Disability, Subjectivity and Sexuality. New York: Palgrave
Macmillan, 2009.
Snyder, Sharon L. “Infinities of Forms: Disability Figures in Artistic Traditions.” Disability Studies: Enabling
the Humanities, ed. Sharon Snyder, Brenda Joe Brueggemann, and Rosemarie Garland-Thomson.
New York: MLA, 2002.
Toner, Patrick. If I Could Turn and Meet Myself. Fredericton: Goose Lane Editions, 2000.
Wente,Jesse.“An Emotional JesseWente on the‘RemarkableArrogance’of anAppropriation Prize.”CBC News
Toronto. 15 May 2017. www.cbc.ca/news/canada/toronto/jesse-wente-appropriation-prize-1.4115293.
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19
DISABILITY IN
CONTEMPORARY POETRY
Johanna Emeney
Introduction
This chapter will explore the work of contemporary poets who write autobiographically about
disability,1 comparing their perspectives and approaches. This is poetry from the “lifeworld”2
of neurological, visual and auditory impairment. First and foremost, however, it is lyric poetry
that universalises human experience, communicating our common psycho-social and polit-
ical concerns. First, I will analyse the poetry of two women whose work has been influenced
by progressive impairments: Lucia Perillo (1958–2016) and Michele Leggott (1956–). Both
poets often take as their subject matter the bodily demands placed on them by degenerative
conditions. Moreover, the trajectory of Perillo’s multiple sclerosis (diagnosed when she was
30) and Leggott’s retinitis pigmentosa (diagnosed when she was 29) may be traced through their
poetry collections’ thematic emphases and motifs.
Although some disability studies theorists have objected to a focus on impairment and
“defective” embodiment, these foci “conced[ing] ground to the biological reductionism that
[has] been orchestrated and sustained by doctors and other social care professionals for more
than two centuries” (Thomas, Female Forms 120), others think it is none the less important to
take into account subjective experiences of living with impairment. Indeed, many theorists
have long been calling to “bring the body back in” (122). British feminist disability activist Liz
Crow asserts that the body is as real a site of experience as any external one: “External disab-
ling barriers may create social and economic disadvantage but our subjective experience of our
bodies is also an integral part of our everyday reality” (58).
Lucia Perillo began to allude to her illness in The Body Mutinies (1996), her second collection.
While she is on the record as someone who has “never been interested in being a ‘disabled
poet’ ”, Perillo nonetheless grew increasingly comfortable with sharing her views on the body
as both functioning and non-functioning organism during the course of her career (“Dear
(Hypothetical) Reader”). Many of her poems are about personal experience, but some are from
more of a remove, and regard the physical realities of others’ impairments, as well as disability’s
social, economic and cultural aspects. Furthermore, a collection of essays published in 2007
addresses topics such as the curtailment of her life as naturalist once she could no longer walk
unaided, and the difficulties of sex for people with impairments. In these essays, as in her poetry,
Perillo’s tone is honest, often humorous, and appreciative of life’s irony.
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Disability in contemporary poetry
Michele Leggott, like Perillo, provides a first-person account of disability in many of her
poems, and engages with its everyday effects upon body and mind. In 1985, Leggott was
diagnosed with retinitis pigmentosa, a condition that has caused a gradual loss of sight to the
point of blindness. Whilst her poems remain rich in visual imagery, its inclusion is reliant on
memory and description from friends: “My poems are still full of images, but they are assisted
images –things told to me or that I remember…When I do that, the images in the poetry have
the function of putting the world back in front me” (Raggatt).
In looking at Leggott’s poetry over two decades, it is possible to perceive not only references
to her growing impairment, but also evidence of the ways in which formal innovation has been
catalysed by physical constraints. A poet who enjoys performance, Leggott has had to adapt her
way of working onstage to accommodate the restrictions of her condition, but some of the
modalities that she has needed to use in order to do so have opened the door to new ways of
working with the structure and general style of her poems.
Finally, the chapter will discuss Deaf3 poetics in its written form. I will analyse some poems
from The Perseverance (2018) by Raymond Antrobus, focussing on how the poet uses language and
structure to interrogate his identity as a British Jamaican Deaf man. In addition to this intersectional
aspect of his work, I will also explore the way in which Antrobus has problematised the presenta-
tion of deafness in the western canon, using his own writing to critique and subvert that depiction.
Like Leggott and Perillo, Antrobus is able to offer the reader a valuable personal account of
impairment –and one that is both a meditation on the subject of his d/Deafness, and also a
commentary on the socio-political contexts of the UK and the US in which the Deaf and/or
biracial personae in the poems find themselves. In The Perseverance, Antrobus presents the reader
with lyric poems which pose questions not only about Deaf and hearing cultures and how
they might communicate more effectively, but also about how we all might communicate more
effectively and more equitably in fraught times. Disability studies, with its nascence in activism
and its emphasis on dismantling a historically constructed discourse of objectification and mar-
ginalisation, encourages those who were once narrativized to become the tellers of their own
stories, and Antrobus’s collection exemplifies this impulse.
The Body Mutinies: the poetry of Lucia Perillo

Lucia Perillo investigates the degradation of the human body with the same curiosity she
dedicates to many of the wildlife studies in her poetry. She seems as interested in the human
animal and its biology as she is fascinated by creatures such as the turtle, the cow and the white
rat. Her work is also insistent on the fact of the body as the site of suffering and of art.
Perillo, who majored in Wildlife Management at McGill University, worked as an animal
damage control researcher at the Fish and Wildlife Service in Denver, the San Francisco Bay
Wildlife Refuge and, later, Mount Rainier National Park. Her interest in poetry ran alongside
these placements; she attended a poetry workshop at San Jose State University taught by nature
poet Robert Hass, and completed a master’s degree in English at Syracuse University. One year
before the publication of her first collection, Dangerous Life (1989), Perillo was diagnosed with
multiple sclerosis.
Although Perillo has expressed an antipathy to the term “disabled poet” (“Dear (Hypothetical)
Reader”) she has also explained the way in which earlier concerns that were prominent in her
writing faded into the background upon her diagnosis:
I became less interested in women’s issues when my identity as a woman was subsumed
by my identity as a person who was sick. …Then that identity overtook these earlier
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Johanna Emeney
concerns because they paled. My earlier feminist concerns, my feelings of discrim-

ination, were small potatoes compared to what I was up against subsequent to that.
I acquired a new identity. Now, you know, I don’t even feel like a woman anymore.
I don’t feel that’s my primary identity. It stopped being my concern. I felt that: Oh,
I’m this other thing now.
(“The Body Mutiny”)
The Body Mutinies (1996) features many poems which deal with her condition, describing pri-
marily what sociologist Carol Thomas refers to as “impairment effects” (135). Thomas formulated
the idea of impairment effects in her 1999 publication, Female Forms: Experiencing and Understanding
Disability. The phrase is meant to acknowledge the daily difficulties of living with impairment
“without undermining the importance and centrality of disablism” (135).Thomas’s intention is that
the impaired body be understood “as bio-social in character” (135). She explains:
Put at its simplest, impairment effects refer to those restrictions of bodily activity and
behaviour that are directly attributable to bodily variations designated “impairments”
rather than to those imposed upon people because they have designated impairments
(disablism). (136)
In the title poem of The Body Mutinies, Perillo critiques “medicine’s blunt instruments” –
“words and names” –and how they “undid” her (6, 7) on the day she received her diagnosis.
She remarks upon the industry that profits from the medicalisation of illness, spying “the dusty
bedpans glint[ing] like coins” in the “surgical supply shop window” (14, 13). In “Retablo with
Multiple Sclerosis and Saints” (31–34), she berates the “hospitals where the doctors are such
screw-ups /even death gets botched” (77–78). For the majority of that second poem, though,
her focus is upon “impairment effects”.
In “Retablo with Multiple Sclerosis and Saints” (31–34), written for her close friend,Vivian
Kendall, who also had multiple sclerosis, she describes a devotional painting, which, it seems,
Vivian is working on. It is a retablo of the style that Frida Kahlo collected and famously
transformed, often inverting the traditions of the devotional votives to convey her own ideas
regarding suffering, divinity and redemption. In the poem, we are told that Vivian’s painting
features various religious figures –“Saint Joseph for the good death. /Camillus for protection
against sickness of the feet” (1–2) – and an image of the artist herself, her “face […] jowled like
a yam and floating /where a black cloud threatens to digest [her] legs” (16–17). The speaker
admits:
Each night I try to memorise the fit of my own legs

In case my waking finds them shadowy and numb;
I don’t want any limb to think I am ungrateful
For swimming lengths of the ice-blue pool.
Or for the soup spoon’s lifting, or for the swallowing… (21–25)
The imagery of impairment shifts disturbingly in the last line as the speaker’s gratitude is drawn
to the things that may well be taken away from her as her disease progresses: using her hand to
feed herself and being able to swallow. The terror of life itself growing smaller in terms of the
impairment effects of her illness is what concerns her.This is emphasised when she brings Kahlo
directly into the poem, and denounces a critic who called the “two-hundred replications of
her face /a self-indulgence” (64) and proposed rhetorically, “doesn’t everybody live with some
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degree //of pain?” (65–66). The speaker exclaims to her friend, “christ, Viv: by the end she
only had one fucking leg! –/how was she supposed to paint the world if she couldn’t /even
stagger round the block?” (68–70).There is a rage in her question –also rhetorical –that decries
any charge of solipsism directed towards Frida Kahlo’s art. The question also holds within it an
implied fear of losing creativity to the body’s mutinies. If Kahlo was forced to paint herself over
and over again because her world became so interior, what might become of the speaker?
In another poem from The Body Mutinies called “Kilned” (38), Perillo considers what it is to
make art from “catastrophe” (25). She uses as the poem’s central figure the artist Stephen Lang,
who makes sculptures from molten lava. The poem begins with an italicised epigraph, which
quotes Lang: “I was trying somehow to keep my works /true to their nature, to allow the crudeness /to
be their beauty.”This is the emotional centre of the poem: the idea that art can be made from that
which is painful –that which is potentially “grotesque” (18), potentially fatal.Yet that which is
also true. It is the same idea as that which lies at the heart of “Retablo with Multiple Sclerosis
and Saints”: surely suffering is a worthy subject for art –for poetry.
The first part of “Kilned” describes the times when the speaker is put in mind of Lang, who
works close to the volcano’s fire, and who, “[w]‌hen he catches fire […] will roll in a patch of
moss /then simply rise and carry on” (14–15):
These days when blood refuses to be talked into the stone,

when the legs twitch like hounds under the sheets
and the eyes are troubled by a drifting fleck – (1–3)
She appears to see in the sculptor’s intention and process a mirror both of her own gathering
together of body and mind in the face of distracting corporeal disobediences, and of her writing
about illness:
First he tries to see what this catastrophe is saying.

Then, with a trowel in his sweaty, broiling hand,
he works to sculpt it into something human. (25–27)
“[T]‌o sculpt it into something human” is a powerful phrase, and some disability studies scholars
would perhaps take issue with the implication that there is something subhuman about the body
described in stanza one for which the molten rock, brought under control by the sculptor in
the last three lines, is a correlative. By connection, in a 2007 review of Perillo’s essay collection,
I’ve Heard the Vultures Singing: Field Notes on Poetry, Illness, and Nature (2007), Laurie Clements
Lambeth explains what she views as the book’s problematic presentation of embodiment and
illness:
The book’s difficulty lies in the uneasy balance between the edgy, angry, overtly dra-
matic and therefore sentimentally portrayed self, and the beautifully subdued and
moving consolation made in connections between her body and nature. It is indeed
fiercely honest, but it feels edited to downplay the lyric and turn up the volume on
what might be seen by disability scholars as re-inscribing ableist conventions of the
illness narrative, privileging the body that once was.
(Disability Studies Quarterly)
Perillo, reflecting on her poetry, has described it as “tottering on the edge of the precipice
of sentimentality” (“An Interview with Lucia Perillo” 22), but she has added, with specific
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reference to the poem, “Shrike Tree”, “that it may be all right to err on the mushy side of
things once in a while, especially because we have such a cultural proscription about what we
call self-pity…I also should say that I’m interested in the idea of self-pity, what it is specifically
and why it is forbidden” (22). Lennard J. Davis explains that “by narrativizing an impairment,
one tends to sentimentalize it and link it to the bourgeois sensibility of individualism and the
drama of an individual story” (3–4). This focus on the individual, of course, ignores causal
factors of disability that are environmental, cultural and socio-political. Theorists who share
Davis’s view also perceive it to be extremely difficult for any first-person account of impair-
ment to avoid reinforcing conventional representations of disabled characters as heroic, hor-
rifying or heart-breaking. Furthermore, as Hughes (2009) posits: “Frailty offends, reminding
the ‘clean and proper body’ of the ghosts of the ageing, suffering and affliction that represent
its most profound fears” (401).
“Shrike Tree”, published in Perillo’s 2007 collection, Luck is Luck, features the disturbing but
fascinating image of a tree in which hook-beaked birds hang their prey –such as smaller birds,
shrews, toads, etc. –in order to desiccate them or leave them to be stripped of their poisonous
skins before consumption. This vehicle, like the image of Lang in “Kilned”, sculpting his pieces
from molten lava, is utilised to convey Perillo’s thoughts regarding embodiment:
Some of the dead ones hung at eye level

while some burned holes in the sky overhead.
At least it is honest,
the body apparent
and not rotting in the dirt. (“Shrike Tree” 5–9)
Perillo takes the perspective in this stanza of observer; there is something of the roaming nat-
uralist of her earlier poems, but there is also an empathy with the impaled creatures who are
admired for their (albeit involuntary) dissolution in full sight. Once again, her poetry suggests
a connection between honesty and suffering. The body laid bare is, for Perillo, a marvellous
confrontation. It is like a natural work of art, too, “hung at eye level”, for the speaker to
wonder at.
The last part of the poem complicates the narrative perspective, intertwining the observer
and subject by degrees. To achieve this, Perillo first employs a devastating metaphor after the
very plain phrasing of “back when I could walk”, the first assertion of her impairment:
They hang there, desiccating

by the trail where walked back when I could walk,
before life pinned me on its thorn. (24–26)
Now, both the speaker and the shrike’s prey share the same ineluctable fate.
Rather than bemoan the pathos of such suffering, however, Perillo asks the reader to con-
template the “glamour” (30) associated with such a rare and spectacular end in the poem’s
final lines:
Because imagine the luck! –: to be plucked from the air,

to be drenched and dried in the sun’s bright voltage?
well, hard luck is luck, nonetheless.
With a chunk of sky in each eye socket.
And the pierced heart strung up like a pearl. (33–37)
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Perillo closes this poem with an amalgam of registers designed to be persuasive in various ways.
In close proximity are the discursive, the exclamatory, the vernacular and the lyrical as Perillo
asks, why shouldn’t one draw attention to those parts of life that are “hard luck” (35)? Why
shouldn’t one direct people’s attention towards tragic glamour? Why shouldn’t the suffering
body be the subject of the unflinching gaze? In her own words: “Maybe I was trying to see if
a certain amount of rigor of exposition could render self-pity palatable” (“An Interview with
Lucia Perillo” 22).
Perillo’s presentation of disability in terms of personal tragedy in poems like “Shrike Tree”
clearly goes against a social model of disability.Vic Finkelstein, for example, argues that “you see
disability fundamentally as a personal tragedy or you see it as a form of social oppression” (4).
Perillo’s perspective may well be viewed as one that hearkens back to the “individual model”
of disability (Oliver, Sapey and Thomas 12). For those who espouse the social model, “disability
should be understood not as a corporeal deficit but in terms of the ways in which social struc-
ture excludes and oppresses disabled people” (Hughes 59). To read just one or two volumes of
Perillo’s poetry, though, is to understand that she is well aware of the social barriers facing those
who are disabled, the fraught issues surrounding the medicalisation of illness, the difference
between age-related impairment and that which a person is born with or which develops at
mid-life. She has a keen apprehension of the stark differences between what is possible for those
who are ill and have money and family, and what it is like for those who have neither. In fact,
to read just one poem like “Elephant” (36–37) from The Body Mutinies, wherein she observes
first, a disabled writer4 giving a reading from his latest work and then, as she leaves the event, a
wheelchair-bound homeless man bedding down in a shop doorway, is to perceive her holistic
understanding of disability and impairment.
Although Perillo, who died on 16 October 2016, at the age of 58, claimed “never [to have]
been interested in being a ‘disabled poet’ ” (“Dear (Hypothetical) Reader”), her oeuvre speaks
directly about “what the body can continue in spite of ” (“Elephant” 9) and what it is to desire
freedom from the “meat cage” when continuing becomes unremittingly difficult (“Virtue Is the
Best Helmet” 3). In an interview with Sophie Grimes of Publishers Weekly given in the last year
of her life, Perillo explained why the malfunctioning, deteriorating body had become a key sub-
ject in her work: “It’s aesthetically beautiful, really, the process of decay, and biologically quite
complex.” She added, “I suppose the reason I’m drawn to it has to do with my own conditions
of living.” Perillo was determined to transform those conditions of living into poetry, and to
have people regard that transformation with fascination and wonder. The epigraph to The Body
Mutinies reads:
Why be given a body if you have to keep it

Shut up in a case like a rare, rare fiddle
–Katherine Mansfield
Vanishing Points: the poetry of Michele Leggott

Michele Leggott’s poetry, like that of Perillo, allows the reader to understand something of
the increasing effects of impairment on her daily life –and on her “lifeworld”, as Mishler
would term it. On the back cover of As Far as I can See (1999), for example, Leggott is explicit
about her purpose: “Much of what is written here is an effort to remember seeing, some-
thing to put against the dark while I searched for ways of understanding where it has put
me.” This collection, published 14 years after the diagnosis of her condition, brings us directly
into a world that has changed dramatically because of decreasing vision –a world that feels
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relentlessly disorienting. At this juncture, the symptoms which began as episodes of night
blindness and pericentral sight disturbances have become much worse: “When I couldn’t
thread a needle, when I could no longer see the faces of my children or trim their nails, when
the colour of money disappeared (and I bare-headed in the midday sun) then falling began
and I cried out against it” (“a woman, a rose, and what has it to do with her or they with one
another”  8–11).
In a similar way to Perillo, Leggott does not edit the fear –nor is her work without what
G. Thomas Couser would describe as “the rhetoric of nostalgia…representing disability essen-
tially as loss” (111):
If touch is a torch and the difference still you, can it matter so very much if I do not
see your face? I hold you, I kiss you. How can I go on without you? The price of the
gate is too high, it tears me apart and I am afraid.
(“Small Stories from Two Decades”)
Yet, this evocation of loss seems to be an integral part of the experience being shared with the
reader; it is the emotional response to impairment. For Leggott, the logical response to impair-
ment, which runs alongside the grief, is reinvention.
By the time Leggott launched her ninth collection, Vanishing Points, in October 2017, her
sight had diminished to mere “pinpoints of light” (Contact Workshop). For the 61-year-old
poet, this collection marked a turning point in her writing –one signalled by the epigraph
of the section titled “Self-Portrait: Still Life. A Family Story”: “I made a decision. I said to
myself: since I have lost the beloved world of appearances, I must create something else. –Jorge Luis
Borges” (35). From this point on, the poems are presented in a prose-like format (with long,
unbroken “paragraphs” with many minor sentences but standard punctuation) as opposed
to what had become Leggott’s characteristic style, demonstrated in earlier collections such
as As Far as I can See (1999) and Milk & Honey (2005) which incorporated such elements as
line-breaks, an absence of punctuation and standardised intralinear blank spaces (four-space
ellipses).
The recent changes in format and style have been spurred by physical and technological
catalysts. Leggott’s near-total blindness, coupled with the inability of audio-technology to “read”
her work back to her faithfully, recognising its line-breaks, intentionally omitted punctuation
and characteristic blank spaces, has nudged her towards prose-poetry and regular punctuation.
As Michael Davidson argues with reference to American poet Larry Eigner, whose cerebral
palsy, some critics posit, influenced his poetry’s diction and form, there is a “danger” of mis-
judging innovation under such circumstances as “a compensatory response for physical limits
rather than a critical engagement with them” (122). It is important to note that everything
about the evolution of Leggott’s poetry suggests critical engagement. She is an innovator, an
amalgamator and an appropriator, both in her poetic process and in the performative aspects of
her work.
A poet who perceives performance as an imperative part of her poetic practice, Leggott, with
the help of Tim Page, a digital media specialist at Auckland University, started to experiment
with various technologies to enable her to continue to read her work aloud when her sight
would no longer accommodate standard –or greatly enlarged –print. Half-way through 2012,
Leggott finally turned off the visuals when performing her poetry to an audience.While she still
composes her poems using a computer keyboard, she now recites her poetry utilising an iPod
and ear-piece. GPS’s “Karen”, the Australian-accented voice, reads the poem to Leggott, a line
or two in advance of her delivery.
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Significantly, a number of poems which Leggott uses frequently in performance have been
edited down considerably from the print-published versions –for example, quite a few of
the poems in As Far as I can See (1999) and Heartland (2014). The cuts that have been made
have revitalised the works and surprised Leggott by becoming her preferred versions (Contact
Workshop). Another way in which Leggott’s poetry has changed over time is that her modernist
sensibility –the acquisitiveness, the desire to have her poems feature many voices from many
times and places –has developed further. Now, those of her poems which require deeply visual
elements have collaborators. Often, these are literary friends who will describe the required
element –for example, a painting or sketch –and then Leggott will not only use the mental
imagery their descriptions conjure for her, but some of their words and phrases as well. In that
way, there is a double transformation and assimilation at work.
For the purposes of comparison across the years, we can look first at a work from 1994, and
then one from 2017. In 1993, the retinitis was discovered to have infiltrated the poet’s cen-
tral vision. In 1994, however, Leggott was still reading print, although she was suffering some
visual disturbances. In DIA (1994), Leggott’s third collection, there is a sonnet sequence titled
“Blue Irises” (8–39), thirty poems investigating the source and sustenance of female power.
Throughout the series of poems, archival material features heavily –lines appropriated from
the classical world, from the work of earlier and contemporary poets –and incorporated into
Leggott’s own poetry. The past is brought forward, melded with the present. The result is many
women’s voices, an assemblage that is as polemical as it is dynamic. To give an example, “Sonnet
16” from “Blue Irises” contains lines from the work of Eileen Duggan (“A New Zealand
Christmas”), Bernadette Hall (“Constructing a Landscape”) and Robyn Hyde (“China is
floating past me”).These lines are not signposted by footnotes; they are not glossed anywhere in
the text or the collection as a whole; the words of these other women poets are simply drawn
into chorus with Leggott’s own (Newman 118).
16
Coming home like a derelict Egyptian, changing
Worlds, a baby delivered in a jacaranda mist just
Like mine The trees are quiet now, the baby grown
And sorrow gone from the place it lay down in
Long before I was born What are we going to do
About that moon in the ngaio tree beating like
A fontanelle? Can we go on reading the summer
Constellations that do not pretend to be literature?
Cicadas Avocados But where’s that frightening dog
sorrow? Lord butterfly on lord hibiscus spray
are we through crying and the heart’s big conversation
with pain? Two sons, two sons, and crowning
isn’t a light word any more than a light kiss
resembles a dark one Which you are (25)
Lines 5–7 are an amalgamation of Hall and Duggan; line 10 comes from Hyde. No doubt, there
are other instances of “reticulation” (Leggott, Qtd in Newman 124), but these serve to illustrate
the many-voicedness of the work –in this example, it echoes back through the years of New
Zealand poetry by women.
In the 2017 collection Vanishing Points, the section titled “Emily and her Sisters” contains
small character studies of artist Emily Cumming Harris (1837–1925) and her siblings. These
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were constructed by combining descriptions of five botanical sketches (by Harris) written by
New Zealand women with extracts from archival material such as Emily’s letters and diaries.
The result is a series of poems which tells the story of the sisters from the point of view of Emily,
yet refracted twice: once through the person who described the image and once more through
Leggott who drew together the archival material and who combined it with selected parts from
each writer-colleague’s description of the sketch. Gone are the four blank spaces; gone are the
line-breaks, but the rhythm and chimes remain. Perhaps most importantly, the multi-layered
quality of the work remains –and continues to evolve. In the example which follows, it is pos-
sible to see, in just a few lines, the texture made possible by the technique of assemblage. It is as
though Frances is created all at once –in chorus, in collage:
frances
She is my rebel soul, my other self, the one who draws me out
and folds me away. She is a brush tipped with paint, a Conté
crayon poised above white paper. She is running after Frank
Standish, wearing out her heart on him, waterscape, landscape,
natural rock archway destroyed by the quarry opened up for
breakwater construction and at last there was safe harbour for
landing in. Frances, fourth daughter, my sister across the sea
when I despaired of ever coming home. (1–8)
It is also possible to trace Leggott’s evolving style through just one poem: “Olive” appears in
different forms online (in Otoliths journal, in Heartland print book and Heartland eBook (2014)).
The version I will quote from is the eBook, which is the latest version. “Olive” tells of the
arrival of Leggott’s guide dog. Olive’s journey to Leggott’s home in Auckland was delayed by
the explosion of the Pike River Mine. When the mine exploded on 19 October 2010, 29 men
were killed, their bodies trapped inside.
One-third of the way through the poem, Leggott melds the two situations, personal and
national: a robotic camera has been sent into the mine and there is little hope; the speaker
takes the dog out on a first walk. A different type of trepidation suffuses both situations. The
lack of punctuation and run-on lines add merge the two events, as do the images of seeing and
breathing:
when the drill breaks through the images

show that nobody reached the oxygen refuge
when they find a cap lamp still flickering
in the camera’s eye four and a half days
and a kilometre in we go out for the first time
just around the block only to hear
there’s been another explosion
dog I hold my breath as you take us
into the world I can’t see (31–39)
The two strands are further united in the penultimate stanza by a single “path” (43) that is
described as running “between light and darkness pain and rage /care and the undoing of
everything we cared for” (44–45). It is a path shared by all of the people who await news of
the miners who are now “entombed” (41) because the mine has been sealed to stop further
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explosions. People are “threading” (43) this path, suggesting that they are static, waiting, as if
stitched into material. Yet, in the final stanza, movement is created by the dog. Amazed, the
speaker wonders, “my dog how can you move with such grace /through these days pulling sea
and sky along /with you under the red-flowering trees” (46–48). The guide dog is leading her
as if hauling the whole world onwards: this is not “peace /but motion” (49–50). The inference
appears to be that the dog is keeping her going, keeping her moving, in this new, unaccustomed
way, just as the small community of Pike River, and the nation as a whole, can only continue
moving forward in this circumstance, trying to carry on, together:
…ten thousand people looking up

the valley to a dip in the ranges while someone sings
You’ll Never Walk Alone not peace but motion
what is her name they ask me and I say
she has been here since the start her name is Olive (50–54)
In “Olive” (her name meaning “life”), we are reading about the emotions associated with the
transition from independence to relying on a guide dog. We come to understand the difference
Olive herself makes to this transition, and how the first steps into this relationship are both
frightening and revivifying. However, the poem is political, as well as personal: it is a poem
about a disaster that affected individuals, families –a whole nation. The personal and the pol-
itical are inextricable, and the poem’s emotional power relies on the emphasis Leggott places
upon resilience, trust and interdependence.
The Perseverance: the poetry of Raymond Antrobus

Raymond Antrobus explores the personal and political implications of d/Deafness in The
Perseverance (2018). The personae of the poems are usually d/Deaf voices, and often they tell
Antrobus’s own story in the first person, allowing the reader a powerful insight into his experi-
ence from childhood to adulthood.
Many of the poems convey a deep sense of frustration associated with Antrobus’s early
feelings of non-acceptance by a predominantly hearing society. “Dear Hearing World”, mod-
elled on Danez Smith’s polemical “dear white America” (Poetry Foundation), rails against the
discrimination Antrobus sees in an education system geared towards hearing culture:
I tried, hearing people, I tried to love you, but you laughed

at my deaf grammar. I used commas not full stops
because everything I said kept running away.
I mulled over long paragraphs because I didn’t know
what a natural break sounded like, you erased
what could have always been poetry ( 14–19)
Antrobus endured a difficult school career. Until the age of six, when his deafness was finally
diagnosed, it was “assumed that [he] was dyslexic and introverted” (“Echo: A Deaf Sequence”);
his reports suggested “slowness” (“Echo: A Deaf Sequence”). A minor error of speech –one
of the missed signs of young Antrobus’s deafness –features in “Echo” (13–18), a poem divided
into BSL numbered sections to . In poem , an old cassette labelled “Raymond Speaking” is
replayed for the reader:
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…my two-year-old voice chanting my name, Antrob,

and Dad’s laughter crackling in the background,
not knowing I couldn’t hear the word “bus”
and wouldn’t until I got my hearing aids.
Now I sit here listening to the space of deafness –
Antrob, Antrob, Antrob. (“Echo”   7–12)
This poem is complicated by the fact that its context is the death of the poet’s father, whose
laughter “crackl[es] in the background” (8). The tape recording is found while the speaker
“clear[s]‌out [his] dead father’s flat.” Like Perillo and Leggott, Antrobus does not deal solely in
the poetry of impairment and its psycho-social resonances. The speaker’s contemplation of the
echoing “space of deafness” in the last lines is also an indication of his loss and grief. These are
lyric poems which transcend the personal and deal in universal touchstones of experience: the
loss of a parent being just one example.
The idea of “space” or something “missing” is continued in the fifth poem in the “Echo”
sequence, which depicts one of the diagnostic tests he underwent as a child:
…a doctor gave me a handful of Lego

and said to put a brick on the table
every time I heard a sound.
After the test I still held enough bricks
in my hand to build a house
and call it my sanctuary (“Echo”    1–7)
Here, the silence is a thing to hold onto and to seek refuge in. By contrast, the more polemical
poems in the collection draw attention to the fact that the “sanctuary” (“Echo” 7) transforms
to a place of danger in his years as an adolescent and an adult. Deafness becomes its own threat
to safety. For example, in “Miami Airport” (76–78), the voice of a security guard harangues a
deaf, mixed-race man with questions that slide all over the page –left, right, centre, their slip-
periness in the white space suggesting the way in which the addressee must concentrate to
comprehend them:
Why didn’t you answer me back there?

you know how loud these things are on my waist?
you don’t look deaf?
can you prove it?
do you know sign language?
I.D?
why didn’t I see anyone that looked like you
when I was in England? (“Miami Airport” 1–8)
On his website, Antrobus claims that he has had this type of experience many times: “I rarely
get through an airport without the ‘random search’ or being escorted into a backroom for
questioning”. The double-vulnerability of being Jamaican British and d/Deaf is a concern that
the collection raises more than once, and in so doing places racism and audism side by side for
the reader’s apprehension.
In “Two Guns in the Sky for Daniel Harris” (54–55), the potential for violence prickling
under the surface of “Miami Airport” is realised. The poem’s occasion is the fatal shooting of a
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29-year-old deaf and speech-impaired man by a Carolina State trooper who pulled him over for
speeding. The Evening Standard reports that the officer said he “opened fire because Mr Harris
was moving towards him and not responding to his commands” (Dunne). Witnesses claimed
that “the victim, who died at the scene, had been using sign language towards the officer” and
that he was shot “almost immediately” after getting out of his car.
“Two Guns in the Sky for Daniel Harris” works to two crescendos. The first is the shooting
and the second is the speaker’s realisation of his own vulnerability. Like Perillo in “Shrike Tree”
and Legott in “Olive”, Antrobus weaves the two subjects together during the course of this
poem.The result is a piece that successfully universalises the experience of two d/Deaf men and
raises awareness of an important political and social issue.
The opening lines starkly create the scenario: “When Daniel Harris stepped out of his car
/the policeman was waiting. Gun raised” (1–2). Then a faux digression into a lesson on sign
language’s tenses segues quickly into the immediacy of the pointed gun at lines 6–7. A sudden
shift from “I” to “you” places the reader in Daniel’s position, face to face with a gun:
I use the past tense though this is irrelevant

in Daniel’s language, which is sign.
Sign has no future or past; it is a present language.
You are never more present than when a gun
is pointed at you… (3–7)
The critical point, the first climax to which Antrobus has been building, is that what the officer
saw was “Daniel’s language” (4). Daniel waved his hands, making the sign for No!, and the officer
shot him. A terrible mistake of communication –an inability by the officer to read Daniel’s
meaning (or the officer’s refusal to try and intuit his meaning) –ended in Daniel’s death.
The turning point of the poem comes next; the scene changes to the “news” (12) reaching
the speaker on his phone as he sits in a Brooklyn café. His friend looks through the comments
section of the paper and reads “Black Lives Matter” (15) just as an armed policewoman enters the
café. A question suddenly runs through the speaker’s mind, as he thinks about the precariousness
of their language –a language made by hands moving:
Now what could we sign or say out loud

when the last word I learned in ASL was alive?
Alive –both thumbs pointing at your lower abdominal,
index fingers pointing up like two guns in the sky. (16–19)
There is an implication by means of the juxtaposed “news” (12) on the phone and “Black Lives
Matter” (16) in the comments section, that we can view the plight of Daniel Harris as similar
to that of the many Black Americans who have lost their lives in needless altercations with US
police. We are invited to see these fatal confrontations as motivated by bias and a fundamental
failure of communication and understanding.
The tragic ease of this misapprehension is exemplified in the final lines of the poem (17–20),
which suggest that the very sign that communicates the life of the speaker and his friend could,
by its resemblance to a threatening gesture, “index fingers pointing up; like two guns in the sky”
(20), endanger them in the presence of a police officer in the café wearing two holstered guns.
Antrobus ends his poem with the ASL word: “Alive” –the fingers and thumbs clearly
making the “two guns” of the title and the poem’s last line. Not only does the inclusion of this
sign in print draw the reader’s attention to the possibility of misreading the meaning, timbre
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and intention of a word or phrase in sign language, in context, it highlights the need for law
enforcement and society as a whole to be educated with regard to those who use exclusively
what is, in most countries, the third or fourth national language.
Antrobus is keen to assert the legitimacy of BSL, and to do so in a way that includes the
reader who is not sign-literate. Throughout The Perserverance, as in Kaminsky’s Deaf Republic,
signs communicate in one more way the message that sign language (suppressed in America
1880–1960 and in England from 1880–1974) is a valid, complex and nuanced system.
Also of orthographic interest in Antrobus’s collection is the inking-out of Ted Hughes’s
“Deaf School” (39–40). The Perserverance (which won the 2019 Ted Hughes Award) features
an entirely redacted version of “Deaf School” in which the Hughes uses the word “simple”
five times to describe the deaf students, and makes sweeping statements such as “They lacked
a dimension” (4). They are also depicted in bestial terms: “monkey nimble” (1), having faces
like those “of little animals” (3), appearing as “small night lemurs caught in the flashlight”
(3). Antrobus’s “After Reading ‘Deaf School’ by the Mississippi River” (41–42) depicts a very
“simple” (5) Hughes attempting to describe the titular river –such a large body of water, with
so much history –and getting it all, all wrong.
In writing back to Hughes’s poem, Antrobus hijacks some of the original language, and
in so doing aligns with Mary Louise Pratt’s definition of autoethnographic writing wherein
“colonized subjects undertake to represent themselves in ways that engage with the colonizer’s
own terms” (Qtd in Couser 116).The words in italics are adapted from Hughes’s original poem,
and we are to assume that the speaker’s voice is that of Antrobus:
No one wise calls the river unaware or simple pools;

no one wise says it lacks a dimension, no one wise
says its body is removed from the vibration of air.  (1–3)
In an interview with Theresa Awonuga, Antrobus explains his reasons for the blackout of
Hughes’s poem:
Redacting the text in the Ted Hughes “Deaf School” poem was a cathartic choice,
because when I read that poem my response was intense anger…[T]‌o be able to find
a way into my poem it had to begin with crossing out the old one.
In another interview, with Emily Berry, Antrobus explains the decision to write his own poem
in response to Hughes’s portrayal of the deaf children:
It’s such a way to use your power as a poet, to frame, or to in a way to assault, people
you don’t understand. And I think [sighs] there are so many things in literature, in our
canon, in our story, in our history of language, that I think should be rethought, or
challenged.
In Antrobus’s poem, “Ted” is woven into a narrative of colonisation:
Ted lived through his eyes. But eye the colossal

currents from the bridge. Eye riverboats
ghosting a geography of fog.
Mississippi means Big River, named by French colonisers.
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The natives laughed at their arrogant maps,

conquering wind and marking mist.
(“After Reading ‘Deaf School’ by the Mississippi River” 5–13)
Like a thoughtless and hubristic coloniser, all Hughes managed to do in his poem was attempt
to give names and descriptions to a place and people that were impossible to comprehend
from his vantage point. Antrobus’s “Ted” is a man in a wetsuit with “misty goggles” on (15)
who “Couldn’t see a thing” (15). Antrobus’s poem tells us that ultimately, these outdated ways of
looking will be forgotten, swallowed in time by their very subjects: “No one heard him; the
river drowned him out” (17).
Conclusion
Of the three poets, it is clear that Antrobus is the one who writes from a standpoint of activism.
He is a person who came late to Deaf culture, discovering its language’s richness and promise
as an adult. As a teacher and mentor of young Deaf people, he is passionate about propagating
a Deaf education and culture that he was not party to as a child. Just as he writes back to
colonialist discourses as a Jamaican British poet, he redresses reductive, paternalistic discourses
regarding deafness, using many of the techniques of spoken word together with complex
traditional forms.
Perillo often had a troubled relationship with “this new identity as an afflicted person”; iden-
tifying herself as a disabled poet was caught up with notions of being “typecast” and a dread of
receiving undeserved recognition for being a minority (“The Body Mutiny”). However, in her
published work, the raw and intensely curious manner in which she studies the human body as
it fails shows her perspective: that impaired embodiment is worthy of art, worthy of looking at.
Her way of depicting it, with great empathy for others and self-compassion, also demonstrates
a universalist understanding of human responsibility.
Leggott’s collections range across many topics, but the motifs of eyes and sight, light and
darkness can always be found within them. She is a poet whose developing impairment is part
of her poetry on the page and in performance.The reader is often given access to key moments
in the personal journey of her blindness –as we have seen in “Olive”:
…angels
look out of the eyes of this dog who is here
because I am blind and the world is huge
with possibility we walk her in a raw wind
not knowing we shouldn’t a mistake
that costs but is not the end of the world (11–15)
This willingness to lay bare the lifeworld, together with her modernist acquisitiveness, her tech-
nique of assemblage and her ability to work with assistive technologies, taking inspiration from
them in terms of her work’s style and structure, make Leggott a very fine example of modernist
confessional poetics, collaboration and innovation.
Perillo, Leggott and Antrobus have in common an ability to write autobiographical poetry
about impairment, which is candid, unapologetic and wise. Although the three poets may invite
criticism by some disability studies theorists for their occasional assertions of pre-diagnosis nostalgia
(Couser 111) or their presentation of disability’s “destructive…confining” (Couser 117) aspects,
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what they achieve is powerful self-representation coupled with their poetry’s transcendence of the
purely personal. The universality of their work allows the reader to connect with a world that is
unfamiliar and familiar at once and, in many ways, to experience something of what may be to
come –for, as Hughes writes, “impairment is the fate of each and every one of us and, therefore,
it is important to recognise that able bodied status is essentially temporary” (401).
Notes
1 Like a number of people writing on the topic of disability poetics or disability in general, I am uncom-
fortable with the nomenclature: “disability” –its insinuation of a “lack of ” ability does not represent the
members of the community about which I am writing.
2 In The Discourse of Medicine: Dialectics of Medical Interviews (1984) Elliot Mishler applied German phil-
osopher Jürgen Habermas’s The Theory of Communicative Action (1984) to the medical interview, using
the term “lifeworld” to signify the everyday psychosocial life of the patient –his or her family life, job,
social and economic status –as opposed to the medical realities of his or her condition.
3 By using a capital D, I am suggesting those people who identify themselves as part of the Deaf commu-
nity and Deaf culture. When a small d is used, it usually denotes only the aspect of hearing loss.
4 This writer was Raymond Carver, suffering from lung cancer.
Works cited
Antrobus, Raymond. “After Reading ‘Deaf School’ by the Mississippi River”. The Perseverance. Penned in
the Margins, 2018, pp.41–42.
———. “Dear Hearing World”. The Perseverance. Penned in the Margins, 2018, pp.34–36.
———. “Echo”. The Perseverance. Penned in the Margins, 2018, pp.13–18.
———. “Echo: A Deaf Sequence”. Poetry Foundation. www.poetryfoundation.org/harriet/2017/03/
echo-a-deaf-sequence. Accessed 20 Oct. 2019.
— — — . Interview with Emily Berry. The Poetry Society Podcast. https://poetrysociety.org.uk/
wp-content/uploads/2018/06/18-podcast-Raymond-Antrobus-transcript.docx. Accessed 20
Oct. 2019.
— — — . Interview with Theresa Awonuga. “In Conversation with Raymond Antrobus”. FourHubs,
FourHubs, 2 Oct. 2018, www.fourhubs.com/poetry-1/2018/10/2/in-conversation-with-raymond-
antrobus. Accessed 18 May 2019.
———. “Miami Airport”. The Perseverance. Penned in the Margins, 2018, pp.76–78.
———.“Two Guns in the Sky for Daniel Harris”. The Perseverance. Penned in the Margins, 2018, pp.54–55.
Couser, G.Thomas. “Signifying Bodies: Life Writing and Disability Studies”. Disability Studies: Enabling the
Humanities, edited by Brueggemann, Brenda Jo, et al. The Modern Language Association of America,
2002, pp.109–117.
Crow, Liz. “Including All of our Lives: Renewing the Social Model of Disability”. Exploring the
Divide: Illness and Disability, edited by Colin Barnes and G. Mercer, Disability Press, 1996, pp.55–72.
http://pf7d7vi404s1dxh27mla5569.wpengine.netdna-cdn.com/files/library/Crow-exploring-the-
divide-ch4.pdf.
“ ‘Deaf School’ by Ted Hughes” (redacted). www.raymondantrobus.com/essays. Accessed 17 May 2019.
Davidson, Michael. Concerto for the Left Hand: Disability and the Defamiliar Body. University of Michigan
Press, 2011.
Davis, Lennard J. Enforcing Normalcy: Disability, Deafness and the Body.Verso,  1995.
Duggan, Eileen. “A New Zealand Christmas”. NZ Electronic Text Collection, http://nzetc.victoria.ac.nz/
tm/scholarly/tei-PopKowh-t1-body-d1.html. Accessed 12 Oct. 2017.
Dunne, John. “US Police Officer ‘Killed Deaf Man While He Used Sign Language’”. Evening Standard, 24
Aug. 2016, www.standard.co.uk/news/world/us-police-officer-killed-deaf-man-daniel-harris-while-
he-used-sign-language-a3328166.html. Accessed 16 May 2019.
Finkelstein, Vic. 2001. “A Personal Journey into Disability Politics”. First presented at Leeds University
Centre for Disability Studies, 2001. The Disability Studies Archive UK, Centre For Disability Studies,
University of Leeds. www.independentliving.org/docs3/finkelstein01a.pdf. Accessed 6 Oct. 2017.
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Hall, Bernadette. “Constructing a Landscape”. NZ Electronic Poetry Centre. www.nzepc.auckland.ac.nz/

authors/hall/constructing.asp. Accessed 12 October 2017.
Hughes, Bill. “Disability and the Body”. Disability Studies Today, edited by Colin Barnes, et al., Polity Press,
2002, pp.58–76.
———. “Wounded/Monstrous/Abject: A Critique of the Disabled Body in the Sociological Imaginary”.
Disability & Society,Vol. 24, No. 4, pp.399–410.
Hughes,Ted. “Deaf School”. Collected Poems of Ted Hughes. Edited by Paul Keegan, Faber & Faber, 2012.
eBook Collection (OverDrive).
Hyde, Robyn. “China is floating past me”. NZ Electronic Poetry Centre. www.nzepc.auckland.ac.nz/
authors/hyde/china.asp#china. Accessed 12 Oct. 2017.
Lambeth, Laurie Clements. “Review of I’ve Heard the Vultures Singing: Field Notes on Poetry, Illness, and
Nature by Lucia Perillo”. Disability Studies Quarterly,Vol. 27, No.4, www.dsq-sds.org/article/view/61/
61. Accessed 4 Oct. 2017.
Lee, Phil. “Shooting for the Moon: Politics and Disability at the Beginning of the Twenty-First Century”,
Disability Studies Today., edited by Colin Barnes, et al., Polity, 2002, pp.139–161.
Leggott, Michele. As Far as I Can See. Auckland University Press, 1999. eBook OverDrive.
———. “Blue Irises”. Dia. Auckland University Press, 1994, pp.8–39.
———. Contact Workshop, 139.750: Contemporary New Zealand Writers in an International Context, 3
September 2017, Massey University, Auckland, New Zealand. Reading and Discussion.
———. “Olive”. Heartland. Auckland University Press, 2014. eBook OverDrive.
———. “Olive”. Otoliths. https://the-otolith.blogspot.co.nz/2011/03/michele-leggott-olive.html.
Accessed 16 Oct. 2017.
———. “Small Stories from Two Decades”. Transcript from a performance. 19 Nov. 2014, https://
nzpoetryshelf.com/2014/11/19/michele-leggotts-small-stories-from-two-decades-performed-at-
the-devonport-arts-festival-a-video-link-and-transcript/. Accessed 24 Oct. 2019.
———. Vanishing Points. Auckland University Press, 2017.
———. “a woman, a rose, and what has it to do with her or they with one another.” As Far as I Can See.
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Journal of New Zealand Literature Essay Prize. https://jnzl.ac.nz/jnzl-essay-prize/. Accessed 10 Oct. 2017.
Oliver, Mike. “The Individual and Social Models of Disability.” The Disability Studies Archive UK, Centre
for Disability Studies, University of Leeds. https://disability-studies.leeds.ac.uk/wp-content/uploads/
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pp.1024–1026. Accessed 13 Oct. 2019.
———. “Social Policy and Disability: Some Theoretical Issues”. Disability, Handicap & Society, Vol. 1, No.
1, 1986. Accessed 13 Oct. 2019.
Oliver, Mike, Bob Sapey and Pam Thomas. Social Work with Disabled People Volume 4. Red Globe Press, 2012.
Perillo, Lucia. “Beautiful Decay: The Poetry of Lucia Perillo”. Interview with Sophie Grimes. Publishers
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———. I’ve Heard the Vultures Singing: Field Notes on Poetry, Illness, and Nature.Trinity University Press, 2007.
———. “Kilned”. The Body Mutinies. Purdue University Press, 1996, p.38.
———. “Retablo with Multiple Sclerosis and Saints”. The Body Mutinies. Purdue University Press, 1996,
pp.31–34.
———. “Shrike Tree”. The American Poetry Review,Vol. 31, No. 5, 2002, p.27.
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———. Sociologies of Disability and Illness: Contested Ideas in Disability Studies and Medical Sociology. Palgrave
Macmillan, 2009.
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20
DISABILITY POETRY
Testing the waters of definition
Michael Northen
In his 2007 essay “Crip Poetry, or How I Learned to Love the Limp,” Jim Ferris set out what
might have been the first list of characteristics of disability poetry:
A challenge to stereotypes and an insistence on self-definition.

Foregrounding the perspective of people with disabilities.
An emphasis on embodiment.
Alternative techniques and poetics.
While Ferris himself would be the first to say that his conception of disability poetry is open
to modification, it is one that still holds up well and has the merit of not being confined to a
single definition.
Of course, what we now call disability poetry was present before Ferris’ formulation. It was
present prior to the 1990 passage of the Americans with Disability Act in the United States.
One could trace it back to the publication of Towards Solomon’s Mountain by A. J. Baird in 1986.
Three years earlier Baird had put out a call for poetry in Kaleidoscope, the United States’ first
journal dedicated to disability writing and art, for poetry about physical disability that was
tough minded and grounded in concrete physical fact. His anthology was the result.
Even prior to Towards Solomon’s Mountain, however, several authors in the latter half of the
twentieth century were amassing a body of work that qualified them as pioneers in the field.
Perhaps the most noteworthy of these for his impact on future writers and the genre in gen-
eral was Larry Eigner. Important to what Ferris described as “foregrounding the perspective
of people with disabilities” was the fact that Eigner had lived with disability since birth. Larry
Eigner was born with cerebral palsy. He was in no way an identity poet, though Eigner scholar
Jennifer Bartlett points out, there was no sense of a disability identity in Eigner’s time as there is
today. He came to the attention of the poetry world through his association with Cid Cormon,
Robert Creeley and the Black Mountain School of poetry. While the latter influenced the
appearance of his poetry on the page, two aspects of his disability ultimately helped shape his
work.The first was the necessity of writing about what he could observe from the limited space
that he could look out at from his porch. The second was the physical limitations of his fingers
in the use of a typewriter. Eigner compared himself to a ten-fingered piano player who could
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Michael Northen
only use one finger. All of these factors find their way in to the shaping of his book From the
Sustaining Air, published in 1953.
Though Eigner lived until 1996, few outside (and even within) the world of disability studies
were aware of his work until the publication of Michael Davidson’s breakthrough essay, fittingly
called “Missing Larry” in a 1999 issue of Sagetrieb. Since then his work has continued to gain
traction and in 2020 the first full biography of Eigner’s life and works, written by Jennifer Bartlett,
is scheduled for publication. Bartlett’s connection to Eigner makes her one of the most interesting
contemporary poets to look at in applying Ferris’ characteristics of disability poetry to the poems
produced by actual writers. Even at the time she co-edited Beauty Is a Verb: The New Poetry of
Disability (2011), an anthology that helped to put disability poetry on the map in the United States,
Bartlett did not see herself as primarily a “disability poet.” Her background and interests were
much more in the tradition of the Black Mountain poets like Charles Olson and Robert Creeley,
and language poetry, than in creating a genre of disability poetry. Nevertheless, as a woman with
cerebral palsy, Bartlett’s disability became not primarily a subject of her poetry but a formative
factor in the way that she wrote. In this sense, then, her work provides a natural forum for looking
at work that qualifies as disability poetry by Ferris criteria without actually setting out to do so.
Bartlett describes her cerebral palsy not as a disability or bodily condition but as a form
of movement. If Ferris sees both content and form as aspects of disability poetry, Bartlett
complicates this bifurcation by adding a third: marketing. For Bartlett, the majority of the
poetry about disability that makes it into main presses and public eye gets there primarily
because it appeals to the familiar stereotype of visible disability as tragedy in order to create
sales for the book. She notes, “like Eigner, for me poetry is about language, music, beauty and
form. Not identity and story. Each of the poems does tell a story –but the story is always illu-
sive and secondary” (“Interview”). Rather than making disability the content of her poetry,
Bartlett is invested in dismantling barriers through breaking down traditional forms which she
views as a manifestation of society’s ableism.This project is on full display in Autobiography/Anti-
Autobiography, Bartlett’s continually evolving poem.
Much of Autobiography/Anti-Autobiography can be distilled into what are probably her most
well-known lines:
to walk means to fall

to thrust forward
to fall and catch
the seemingly random
is its own system of gestures
based on a series of neat errors
falling and catching
to thrust forward
sometimes the body misses
then collapses
sometimes
it shatters
with this particular knowledge
a movement spastic
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Disability poetry
and unwieldy
is its own lyric and
the able-bodied are
tone-deaf to this singing (7, 1–18)
While Ferris suggests in his seminal essay “The Enjambed Body” that his own uneven gait could
serve as the basis for a differently-rhythmed poetry, Bartlett’s poem shows how this plays out in
actual composition. Though Bartlett uses short breath-like lines similar to Creeley, the actual
focus of her poem is not on breath, per se, but on how she physically experiences walking. The
lines move out of alignment not to explore the uses of white space but to record the falling that
takes places as an integral part of her natural walk.
Lennard J. Davis has made much of the concept of the invention of normalcy, which he says
entered the English language in 1840 as “constituting, conforming to, not deviating or differing
from the common type or standard, the usual” and the ways in which the social imperative to
be measured against a bell-curve has marginalized those with obvious physical differences (24).
Bartlett challenges such marginalization, not through polemic, but through rhythmically and
viscerally pulling the reader into her own experience. In trying to open up a world of music
to which ordinary readers are tone-deaf, her poem becomes an apologia for disability poetry.
Unlike some of the more anthem-like poems of the disability rights movement, there is no false
sense of bravado:
sometimes
it shatters
with this particular knowledge
The body itself is a source of knowledge. In asserting that her movements are not random but
only a system seemingly so (based upon “neat” errors), she also lives with the weight of the
knowledge of how that body is perceived. This knowledge can be “shattering.” While it allows
Bartlett to assert that the way her body functions is not “less than” but only different, it also
carries with it in the realization that even with this knowledge, she will be constantly subject to
what has Erving Goffman christened “the gaze” (3).
If the above poem tries to build on the experience of a nonnormative body through the use
of alternative rhythms, the second poem of Autobiography more overtly challenges ableist attitudes:
so that, the mother might

say your child must be angry
because you are disabled
so I told her, your child
must be angry
because you are a bitch
and the children ask
why do you talk like that?
and I ask them
why do you talk like that?
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Michael Northen
and children grow up

knowing this is ordinary (9, 1–12)
While the emphasis on poetics is still uppermost in the poem, preventing it from becoming
didactic, Bartlett brings to the surface the default assumption that disability is something only to
be considered or characterized in negative terms. It is an assumption that disability studies scholars
have been trying to bring into awareness since the field emerged: our ordinary language of dis-
course not only reinforces stereotypes and pejorative characterizations, it breeds them. It is the
water we swim in. Though Bartlett is illustrating the way in which we unconsciously pass these
prejudices along to our children as parents or members of society, it would be a mistake to think
this bias is something somehow confined to those who are uneducated or unaware of language.
It continues in more subtle forms even in contemporary poetry. Recently, Jillian Weise angrily
responded to the much celebrated poem “Good Bones,” by Maggie Smith, with a poem of her
own, asking “What if you don’t have good bones?” (Northen, “Still”). An assumption that the
audience is always able-bodied and the building of metaphors upon that assumption –as Smith
does –is one of the things Bartlett militates against. One of her tactics is to return to her roots in
objectivist poetry and generally eschew metaphor in her work. Rather than challenging content by
countering negative metaphors of disability with positive ones, her emphasis is on language, form
and function. As Jim Ferris insists in “The Facts of Life,”“we are not signs” (The Facts of Life, 24, 18).
An additional feature of Bartlett’s poetry, pointed out by Cheré M. Smith, is that much of
the work in Autobiography turns on the concept of accessibility. On the one hand, the nor-
mative public is “tone deaf ” to the systematic rhythms created by Bartlett’s body. To them,
the knowledge that her body offers is inaccessible. At the same time, because of her own
unique body and people’s reactions to it, Bartlett has access to fear of those who are –at least
temporarily – able-bodied:
to be crippled means to have

access to people’s fear
of their own erosion (Autobiography 12, 8–9)
For Bartlett, as for many others involved in disability studies, one of the motivations for mar-
ginalizing those with disabilities, particularly disabilities as obvious as Bartlett’s, is their reminder
that all bodies are permeable, subject to disability and decay. It is essentially a denial of the nature
of their own bodies and ultimately of death. As Bartlett writes, “to be crippled means to have a
window/into the insanity of the able bodied” (Autobiography 12, 1–2).
Bartlett did not write with the intention of establishing a rubric for disability poetry. Her
poetry is in a continual state of evolution, a constant reshaping of poems from their first
appearances in her early, heavily projectivist-influenced chapbook, Derivative of the Moving Image
(2007). Nevertheless, with Autobiography/Anti-Autobiography (2014) she has produced a work
that satisfies Ferris’ postulated characteristics of disability poetry on all four counts. She has
made the body central to her work –not just any body, but her own particular palsied body. In
doing so, she pushes back against stereotypes derived from an ablest-centered view of the world,
including the negative metaphors for disability that it generates. Her experimentation with
form is not a theoretical overlay on pre-established subject matter but something that grow out
of what her body has taught her.
While Bartlett’s work goes a long way to fulfilling Ferris’ conception of and hopes for what
disability poetry could be, it did not appear in a vacuum. Coming almost two decades after
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Disability poetry
Eigner, but long before Ferris, Vassar Miller can be credited with initiating the push for poets
to not only disclose but also to write about their own experiences of disability in their work.
Miller accomplished this first through the publication of collected writing of others in Despite
This Flesh (1985) and eventually in her own collected works If I had Wheels or Love (1991).With
the passage of the Americans with Disabilities Act (ADA) in the United States a number of
important poetry books began to appear including Tom Andrews’ The Hemophiliac’s Motorcycle
(1994), Floyd Skloot’s Music Appreciation (1994), Kenny Fries’ Anesthesia (1996) and Stephen
Kuusisto’s Only Bread, Only Light (2000).
Though none of these writers called themselves poets of disability or, as Ferris was later
to christen them, crip poets, each of these contributed in some way. Ferris himself made a
double contribution to the emerging field in 2004 by publishing “The Enjambed Body: A Step
Towards a Crippled Poet” in the Georgia Review and backing it up with the publication of his
own book, The Hospital Poems, possibly the first collection of poems with disabilities to find a
wide audience.
While Bartlett’s Autobiography/Anti-Autobiography, with its emphasis on visible physical dis-
ability, can be viewed as a classic text against which to consider whether a poem qualifies as
disability literature, many other poets have helped to enlarge the definition making it more
inclusive and in some sense, blurring the boundaries that attempt to define disability. Disability,
after all, is a huge umbrella. Jillian Weise’s The Amputees Guide to Sex (2007) brings feminism
to bear on disability. Kathi Wolfe’s The Uppity Blind Girl Poems (2015) explores disability from
an LGBTQ perspective. In 2009, Daniel and David Simpson, twin poets blind from birth, self-
released poems available only on audio CD, fittingly called Audio Poems (2008). Each perspective
has helped to transform the definition of disability poetry.
The inclusion of D/deaf poets under the disability poetics umbrella provides an interesting
challenge. Advocates of Deaf culture have long rejected the title “disabled,” preferring instead
the analogy of a non-English speaking community side-lined by mainstream culture. In 2009
John Lee Clark edited Deaf American Poetry (2009). Clark’s anthology attempts to build a his-
tory of Deaf poetry beginning as far as the early 1800s. Noteworthy in the anthology is the
first English translation of Clayton Valli’s well-known American Sign Language (ASL) poem
“Dandelions.” Long opposed to having his poetry translated because of the loss it would suffer
in English,Valli finally relented and allowed Raymond Luczak to translate it. Though Deaf
American Poetry was published by Gaulladet University, Luczak and Clark worked together inde-
pendent of university support to publish their writing and that of other Deaf writers, a project
that culminated in Luczak’s establishment of Handtype Press, dedicated solely to the publication
of Deaf literature.
As a poet, Clark is in an interesting position in being able to straddle the line between Deaf
and disability culture. Born deaf, he became blind at about twelve years old. In his earlier poems,
Clark tended to focus on his experience as a deaf man or a member of the Deaf community, as
in “Long Goodbyes” or “The Only Way Signing Can Kill Us.” With “The Bully,” however, he
moved into new territory:
We boys were marching up to Rodman Hall for supper and he stopped and I bumped
into him
He whirled around and pointed at me and touched his lips with his middle finger and
slicked it back over his head
I protested
He said yes you touch my butt
I said me not not see you accident
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Michael Northen
He said not believe you

Before breakfast next morning he saw me watching Gilligan’s Island
He switched the channel
Hey
He laughed
Next morning he did the same thing
I said oh that better thank you
He frowned and pressed the remote
That interesting me like
Switch switch switch
Then Gilligan’s Island was on again
I said no no not that awful boring please other other
He laughed and left Gilligan’s Island on
One time I was in the shower room and a rocket of water slammed into me
Fire extinguisher
I couldn’t see anything except for a baseball cap
It was his cap
I laughed and said more more feel good come on
His last year I was still learning the art of the white cane and sometimes got delayed
tapping off course at night
One night I veered off between Noyes Hall and Frechette Hall and a boy offered
his arm
I didn’t know who until under a lamp I saw a baseball cap
Inside Frechette Hall I thanked him and he smiled
A few minutes later Gary Karow our houseparent came up to me and told me that
the bully was so happy after helping me and maybe I should ask him next time
I needed help
I never did
Some years later he drove down to Texas with a friend to help him pick up a pick
up truck
On his way back alone it was twilight and he turned off his headlights and veered left
into oncoming traffic
A car swerved in time
Another swerved
Then it was a truck that couldn’t swerve and that baseball cap (1–34)
For a sighted person, a first glance reveals the way the lines sprawl on the page in varying
lengths, from one word to thirty-four and in no particular visual pattern. Daniel Simpson, in
his essay “Line Breaks the Way I See Them,” describes the eureka moment in which he realized
that for him, the appearance of lines on a page were irrelevant. Clark not only signals agreement
with this proposition, but also lets readers know that while sighted readers may make up the
majority of the literary population he is not allowing them to be his default primary audience.
This intention becomes clear in the fifth line of the poem,“I said me not not see you accident.”
Despite the use of the words, “he said” there are no quotation marks around the words uttered by
the speaker. There is also no use of punctuation. This is not because Clark rejects punctuation as
a cultural convention or fancies himself a modern-day E. E. Cummings. It is because quotation
marks and other visual forms of punctuation have no meaning in American Sign Language.
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Disability poetry
Unlike Bartlett’s poems, Clark’s writing is affirmatively about story. In creating the poem’s
narrative Clark recapitulates his own experiences. While it is probably clear to the reader by
the fifth line that the poem’s narrator uses ASL, the fact that he is becoming increasingly blind
is only obvious later on, two-thirds of the way through the poem, with the words “I was still
learning the art of the white cane.” Clark builds an ironic parallelism between the narrator and
the bully into the poem. As the narrator’s sight decreases, he gains in understanding about the
bully. When the narrator veers off course due to lack of light, he is rescued by the bully. The
bully, who has sight, purposely shuts off his lights and moves straight into oncoming traffic.
Throughout the poem, the bully is faceless, increasingly reduced to a baseball cap.
Clark’s sense of audience also becomes apparent in his use of sensory material. Touching
is prominent in the poem –bumping, being slammed by water, tapping on the ground with
a cane –as being central to the experience of a deaf/blind reader. Sight is restricted to a few
basic objects, but there is no appeal to sound. Nothing in the poem is lost to a reader who is
unable to hear. It is also worth noting that because Clark does not make white space an inte-
gral part of his poem, nothing on that account is denied to the reader who is accessing the
poem in Braille.
As groundbreaking as “The Bully” is, Clarke’s most important poem to date may be
“Goldilocks in Denial.” “Goldilocks” uses several of the same techniques as “The Bully” such
as a de-emphasis on regular rhythms and auditory techniques and the employment of ASL-
inspired English syntax, but rather than bringing ASL users and blind characters into a situation
in which they begin to understand each other, it puts them on a collision course:
Goldilocks was in deep denial and refused to use a white cane

That’s how she got lost in the woods stumbling over tree roots and things
Then she hit a wall
A house
Door
She entered and wrinkled her nose and remembered the Annie movie from when
she was little
It was the part where Daddy Warbucks said I smell a wet dog
It was dark inside so she did her ginger duck walk and zombie arms until she came
against a table with some food on it
After emptying a bag of Doritos she wandered deeper into the house
Kitchen bathroom living room small chair too small medium sized chair too hard big
recliner ahh that’s much better
When the three bears got home they were happy to find that they had company
Papa Bear shook Goldilocks awake and asked who you
When she didn’t answer Papa Bear put his paw under her hand
She snatched her hand back and said I can see
Papa Bear said okay and asked again who you
She said I’m from Long Island here vacation
Papa Bear asked when arrive here you
She said my name yellowcurls
Papa Bear asked need help you
She said will soon graduate May
Papa Bear gave up and turned to Mama Bear and said denial obvious misunderstand
misunderstand
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Michael Northen
Mama Bear said sad yes nothing can do leave alone

Baby Bear asked if he could play with yellowcurls
Mama Bear thought about it and said no better not yellowcurls denial means hard talk
can’t play good
So the whole bear clan went about their business as if Goldilocks wasn’t sitting there
She jumped up and stamped her feet and said not nice you ignore avoid me
She whirled around to make a dramatic exit but ended up in the bedroom where she
stumbled and fell into a bed
She stayed on the bed for a long time pretending that she had planned to sleep there
all along (1–28)
As the title stipulates, Goldilocks denies her disability. She is prototypical of those who accept
the medical model of disability as something that is an individual problem to be overcome. As
such she denies her need for an accommodation (in the form of a white cane) and, as eventually
happens in trying to pass, she hits a wall. In this case, quite literally. By contrast, the bears see
themselves as a community. They are able to communicate and function quite well within their
own house using their own language. Within that house disability does not exist.
In the scenario that Clark has set up Goldilocks and the bears talk past each other. When
Papa, realizing Goldilocks is blind tries to invite her in by appealing to the common sense of
touch, Goldilocks not only denies her disability but rejects the offer. Despite the seemingly
healthier and more open attitude of the bears, however, they, too, are left in the situation of only
being able to communicate with those in their own community. In the end, the only option
they see open to them is to ignore the person with the disability.
The division between the Deaf and the disabilities communities is still readily apparent. In
2016 the newly formed Disability Writers Caucus representing advocacy for writers at the
annual Association for Writers and Writing Programs (AWP) conference changed its name to
the D/deaf and Disabled Writers Caucus, and in 2017 the UK’s first anthology dedicated solely
to the work of poets with disabilities, Stairs and Whispers, is subtitled D/deaf and Disabled Poets
Write Back. In forcing the two groups together in one poem, Clark highlights this situation. As
a writer who can identify with both groups and whose poems definitely fulfill the criteria that
Ferris initiated, Clark both expands the possibilities for disabilities poetry and highlights the
problem of attempting to come up with a single definition of what disability poetry is.
Even as Clark’s work points to the contribution that disability poetry can make to poetry
in general through the incorporation of language from ASL, he hints at another possibility for
poetry even further off the beaten track. As it stands now, neither printed text nor ASL poetry
nor even audio recordings of poetry can find a direct route to those who are Deaf/blind.
A potential alternative exists for them in the form of Tactile ASL or TASL. Something of a mis-
nomer, TASL allows for communication through the touching of a body part such the forearm
to communicate information. Noting that we are now only at the “huge fantastically contoured
iceberg that is ASL,” Clark can only say for the moment, “There is TASL poetry, like waves
rolling over the shore of your palm” (114).
John Lee Clark and Jennifer Bartlett provide just two of the many possible examples of
what disability poetry might look like, even as they also seek a commonality. Their approaches
reflect two different perspectives or, perhaps, trajectories that lay open to poets with disabilities.
Bartlett’s commitment to promoting and engaging other writers with disabilities is manifested
in her editorship of Beauty Is a Verb, participation in the establishment of the D/deaf and
Disabled Writers Caucus and co-founding of Zoeglossia, an organization creating conference
opportunities for new writers with disabilities, cannot be questioned. Nevertheless, Bartlett
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considers herself a poet first. Her goal for herself and other disabled writers is to see their work
featured prominently in public venues without reference to disability or being labeled a niche
writer. In her forthcoming book, limits are what any of us are inside of, she brings the life and work
of Larry Eigner to the public.
By contrast, Clark has been increasingly concerned with how to make whatever poetry he
and others create accessible to Deaf, blind and Deaf/blind writers. He recently wrote, “The
public is not my audience, though it is welcome to eavesdrop” (Northen, “Still”).The editing of
Deaf American Poetry and Deaf Lit Extravaganza (2013) sharpened his awareness of the degree to
which D/deaf writers have been excluded and his recent essay “Distantism” (2017) lays bare the
ways that the literary world –including other writers with disabilities –ostracizes Deaf/blind
audiences. As for his own poetry, Clark, a continual experimenter, rarely allows his old work to
be republished, saying, “When I get into something new, the old is dead, dead, dead! Or at least
it is to me” (Northen, “Still”).
Beauty Is a Verb: The New Poetry of Disability, which was edited by Bartlett in 2011 and proved
such a seminal anthology in the United States, was largely based upon Ferris’ characterization
of disability. While the impetus for the volume was to push back against negative representation
of visible physical disability, it began to immediately draw criticism for not being expansive
enough. The most frequent criticism was its emphasis on disability as visible and physical. As
Canadian critic Shane Neilson put it, “a problem comes in the separation of physical, ‘visible’
disability and so-called ‘invisible’ disability from one another” (Neilson). Nevertheless, Beauty
Is a Verb (and with it, Ferris’, Barlett’s and Clark’s conception of disability poetry), became
the catalyst for other important anthologies such as Stairs and Whispers in the UK, Shaping the
Fractured Self (2017) in Australia and Imaginary Safe House (2019) in Canada that provided their
editors groundwork characteristics to enlarge upon and the opportunity to formulate their own
visions of disability poetry.
With increased public awareness about disability poetry, new journals (Deaf Poets Society and
Rogue Agent) and recent groundbreaking anthologies, the criteria that Jim Ferris proposed a
decade ago is steadily evolving. As significant as their contributions are, Jennifer Bartlett and John
Lee Clark are only two among the many emerging poets whose work is shaping disability poetry.
All indications are that, like the nature of disability itself, its poetry will continue to reinvent itself.
Works cited
Alland, Sandra, Khairani Barokka and Daniel Sluman, eds. Stairs and Whispers: D/deaf and Disabled Poets
Write Back. Rugby, UK: Nine Arches Press, 2017.
Baird, J. L. and D. S. Workman. Towards Solomon’s Mountain: The Experience of Disability Poetry. Philadelphia,
PA: Temple University Press, 1986.
Bartlett, Jennifer. Autobiography/Anti-Autobiography. Palmyra, NY: theenk Books, 2014.
———. “Connections: For Larry Eigner, Robert Creeley Was a Lifetime Influence.” Poetry Foundation.
Online Journal. April 19, 2017.
———. “A Cripping of Projective Verse.” Wordgathering. Online Journal.Vol. 9, Issue 3, September 2013.
———. Derivative of the Moving Image. Albuquerque, NM: University of New Mexico Press, 2007.
———. “Interview with Jennifer Bartlett.” Wordgathering. Online Journal.Vol. 5, Issue 2, June 2011.
Bartlett, Jennifer, Sheila Black and Michael Northen, eds. Beauty Is a Verb: The New Poetry of Disability. El
Paso, TX: Cinco Puntos, 2011.
Clark, John Lee. “The Bully.” Wordgathering. Online Journal.Vol. 6, Issue 1, March 2012.
———, ed. Deaf American Poetry. Washington, DC: Gallaudet University Press, 2009.
———. “Distantism.” Notes from a Deaf/Blind Writer. Online blog. August 2017.
———. “Goldilocks in Denial.” Wordgathering. Online Journal.Vol. 9, Issue 2, June 2015.
Davidson, Michael. “Missing Larry: The poetics of Disability in the Work of Larry Eigner.” Sagetrieb, Vol.
8, Issue 1: 5–27.
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Davis, Lennard J. Enforcing Normalcy. London: Verso, 1996.

Ferris, Jim. “Crip Poetry or How I Learned to Love the Limp.” Wordgathering. Online Journal.Vol. 1, Issue
2, June 2007.
———. “The Enjambed Body: A Step Towards a Crippled Poet.” Georgia Review, Vol. 58, Issue 2, 2004,
pp. 219–233.
———. “The Facts of Life.” The Facts of Life. Madison, WI: Parallel Press. 2006.
———. The Hospital Poems. Mint Street, NC: Main Street Rag, 2004.
Goffman, E. Stigma: Notes on the management of Spoiled identity. Englewood Cliffs, NJ: Prentice Hall, 1963.
Johnson, Heather Taylor. Shaping the Fractured Self. Perth, Australia: UWA Press, 2017.
Neilson, Shane. “Beauty Is Invisible Too.” Wordgathering. Online Journal.Vol. 12, Issue 4, December 2018.
Neilson, Shane, Roxanna Bennett and Ally Fleming, eds. Imaginary Safe House. Hamilton, Ontario: Frog
Hollow Press and Hamilton Letters & Arts, 2019.
Northen, Michael. “Still Present Tense: The Poets of Beauty Is a Verb.” Wordgathering. Online Journal. Vol.
42, Issue 2, June 2017.
Simpson, Daniel. “Line Breaks the Way I See them” in On the Outskirts: Poems of Disability. Philadelphia,
PA: Inglis House Poetry Workshop, 2006.
Smith, Cheré M. “Frames of Reference in Larry Eigner and Jennifer Bartlett.” Wordgathering. Online
Journal.Vol. 6, Issue 3, September 2012.
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PART IV
Drama
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21
CANADIAN DISABILITY
DRAMATURGIES
Kirsty Johnston
In June 2019, Ali Stroker made history as the first wheelchair user both to be nominated
for and receive a Tony award. Winning Best Performance by an Actress in a Featured Role
in a Musical for her portrayal of Ado Annie, the girl who “cain’t say no” in the Broadway
revival of Rodgers and Hammerstein’s Oklahoma!, she broke new ground, just as she had in
2015 when she became Broadway’s first actor in a wheelchair, performing in Deaf West’s
much-lauded revival of the musical Spring Awakening. Speaking with reporters right after
the Oklahoma! win, Stroker invited “theater owners and producers to really look into how
they can begin to make the backstage accessible so that performers with disabilities can get
around” (Salam). Her remarks called out the striking irony that the Tony awards producers
had not made their Radio City Music Hall venue accessible; no one had thought, at this of
all shows, to make an accessible ramp to the stage from the audience. Unlike all of her non-
disabled professional theatre colleagues and competitors who could easily take the stage from
the house, Stroker had had to wait backstage and enter from the wings. In an interview the
next day with Michael Paulson for The New York Times, she explained further how she felt
about the situation:
I think I had a dream that maybe there could be a ramp built. It’s more than just a
logistical thing –it’s saying that you are accepted here, in every part of you. I know that
the Tonys did the best that they could, and I know that Radio City did the best they
could. I am not naïve –there are a lot of logistical things you have to deal with around
buildings that were built a long, long time ago. They did put in a ramp backstage. And
I had a seat in the front, but the way the night worked out, I never got to my seat.
The tension between Stroker’s artistic victory and this demonstration of professional theatre’s
enduring and overwhelming material inaccessibility, continues to be felt by disability perform-
ance artists, activists and scholars around the world.
As one such person listening to Stroker’s news from Canada, I was immediately struck by the
way her remarks resonated with those offered fifteen years earlier by Canadian disability rights
activist Rick Hansen:
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Being able to get in and out of a building is not enough.You need meaningful access.
That means being able to use the coffee shop and bathroom, just like everyone else.
You can get into theatres now, but can you also get on stage? That has to be the goal.
(qtd. in Picard)
Both Stroker and Hansen underline how important the material realities of theatre-making are
for thinking about disability and drama.Those who seek to challenge the ways in which disability
is invoked, embodied and represented in drama must also think about how their contemporary
spaces and protocols for training, auditioning, casting, designing, stage managing, rehearsing,
workshopping, publishing, promoting, professionalizing, socializing, and witnessing both serve,
and fail to serve, disabled people. It would be a mistake to read Stroker’s or Hansen’s comments
as those of heroic individual overcomers newly discovering cracks in an old but otherwise
benevolent system. Rather, both of their insights connect to a much larger disability arts and
cultural activism and scholarship that has helped to identify theatre’s complicity in generating
ableist framings of disability experience for millennia. Whether contemporary theatre takes
place in a country like the US that has the Americans with Disabilities Act or one like Canada,
which does not, both Stroker and Hansen point out the material features of meaningful theatre
access, those decisions that indicate whether or not “every part of you is accepted.” Here I hope
to give some sense of the ways that playwrights, dramaturgs and theatre practitioners with ties to
Canadian disability theatre practice have sought to trouble theatre’s disabling engines in order to
create more accessible, inclusive and generative relationships between disabled people and stages.
In the limited space of this chapter, I cannot offer an exhaustive account of all this activity but
will highlight key examples in the hopes of suggesting its depth, range and continuing vibrancy.
The pivotal roles that accessible stages, backstage gathering places and bathrooms play in
building inclusive societies is something of a long-standing theme in Canadian disability drama
and theatre. For example, internationally successful Canadian playwright Lyle Victor Albert
(after whom the Lyle Victor Albert Performing Arts Centre in Bonnyville, Alberta, was named)
includes a pivotal shaving scene in his 1995 autobiographical play Scraping the Surface, an explor-
ation of his adventures and misadventures as an Albertan youth growing up with CP. In Time to
Put My Socks On (2008), playwright Alan Shain, who also has CP, brings audiences into the back-
space privacy of his apartment, where, clad only in underwear, he references everyday objects
like toothpaste and tube socks to explore the tensions he has with his non-disabled girlfriend.
Written well before these two plays, the backstage space of a men’s bathroom is also precisely
what David Freeman’s nearly fifty-year-old play Creeps brought to the stage when it premiered
in 1971 at Toronto’s Factory Theatre. With the longest production history of any Canadian dis-
ability theatre play, Creeps won the inaugural Floyd S. Chalmers Canadian Play Award in 1973
and garnered Freeman the 1974 New York Drama Desk Award for best new playwright. It was
the first production of Toronto’s Tarragon Theatre (a now famous hub for Canadian drama-
turgy) and in 2011 Tarragon offered a staged reading of the play to celebrate their fortieth
anniversary. UK and North American remounts over the past decades and recent professional
productions in Seattle and Vancouver suggest the enduring place that Creeps holds in Canadian
drama. Equally, however, it also holds a place in an emerging international canon of contem-
porary plays by disabled playwrights.Victoria Ann Lewis places it first among the plays included
in her landmark 2006 collection Beyond Victims and Villains: Contemporary Plays by Disabled
Playwrights, arguing that it “prematurely [bore] theatrical witness to wrongs that would not find
political analysis and advocacy until later in the decade” (xxxiv). Lewis emphasizes Freeman’s
pioneering decision in Creeps to feature many different disabled characters in cahoots and argu-
ment together. This decision, she asserts, allowed him to move past the inherited stereotypical
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representations of disabled people as merely victims or villains. Instead, their camaraderie and
debates gave them depth and complexity, illustrated variety among disability experiences and,
powerfully, showed “the lived experience of disability as a collective, social process, not an indi-
vidual destiny” (xxv).
The setting Freeman chose to explore these collective, social processes was the men’s bath-
room of a sheltered workshop for what the original play notes describe as “cerebral palsy
victims” (xiv).These notes further explain that,“A ‘sheltered workshop’ is a place where disabled
people can go and work at their own pace without the pressure of the competitive outside
world. Its aim is not to provide a living wage for the C.P., but rather to occupy his idle hours”
(xiv). In his Author’s Statement, Freeman explained that the play
was born of my own frustration, working in a Toronto sheltered workshop where

I sanded blocks, folded boxes and separated nuts and bolts. It deals with people who
have the courage to take their destiny in their own hands. (4)
The bathroom offers refuge to the five main characters, men who, like Freeman, count CP
among their lived experiences. Pete, Sam, Tom, Jim and Michael gather, debate serious life
decisions, goof around, swear, play pranks, flush toilets, smoke, discuss art and sex and porn,
antagonize the supervisory nurse and generally avoid the uninspiring, belittling, charity-framed
work they have been given to do there.The space is gritty, restrictive and evidently far removed
from the high impact socio-political and artistic work for which some of the characters expli-
citly long.Thus, in Creeps Freeman was less interested in representing the tasks and social veneers
of the ableist formal workshop space than the disabled-led backspace of the bathroom. Here he
could feature the unvarnished drama of disabled people in conversation with each other about
the challenges of taking “destiny in their own hands.” The character Jim, who has been to uni-
versity and through this and other institutional acquiescence has been given a leadership role at
the workshop, becomes the voice of a liberal approach to building change incrementally from
within the charitable system. He is taunted by the others’ more radical politics, however, as they
seek a greater revolt against the infantilizing, disempowering assumptions that drive the enter-
prise.Tom wants Jim to join him in an immediate and final exit from the workshop. He exhorts
Jim to develop his writing talent, ideally to share the stories of the men like them trapped in
this disabling system:
Tom: You could go into journalism, write a book. Listen, in this job, who can you tell it
to? Spastics. Now think. Think of all the millions of jerks on the outside who have no
idea what it’s really like in here. Hell, you could write a best-seller. (34)
For his part,Tom dreams of becoming a professional artist, inspired in part by the positive review
a local art critic has given his paintings.The others caution, however, that the review itself might
derive from a charitable impulse akin to that driving the workshop. Tom’s experience prompts
the men to speak and argue passionately about the connections between aesthetics and pol-
itics. They also stress the importance of being heard and understood as socially enfranchised
men. A masculine backspace that keeps the supervising nurse at bay, it has two urinals, two
stalls, a chair, a bench and a generally filthy atmosphere; a cockroach spotted in the urinal is
called out by Pete as “livestock in the pisser” (18). In this earlier era, no automatic doors assist
those in wheelchairs who must rely on the whims of others to get them in and out. The play
emphasizes through a range of scenes the ableist power dynamics underpinning this system of
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having constantly to ask for permission and help to manage urinating or defecating. Bringing
audiences into the bathroom space allows Freeman to get at the failings of the charitable model
of disability at its most basic dehumanizing levels, a model that disempowers disabled people
by preferring charity, ableist infrastructure and segregation to social responsibility, disabled-led
activism and inclusive acceptance of, following Stroker’s words, “every part of them.” Charitable
impulses are further parodied by a series of grotesque scenes interrupting the critical debates of
the bathroom and pitting the self-serving impulses of do-gooders against the characters’ needs
to be recognized as socially valuable adult men. The first such scene arrives a few minutes into
the play:
Blackout. Circus music and bright lights. Enter two Shriners, a girl (Miss Cerebral
Palsy) in a white bathing suit, and a chef. They dance around the boys, posing for
pictures, blowing noisemakers, and generally molesting them in the name of charity.
The chef stuffs hot dogs into their hands. They exit, the music fades, the light returns
to normal. The boys throw their hot dogs over the back of the set. (4)
Such scenes help to align audiences with Pete, Sam, Tom, Jim and Michael’s experiences of the
shelter’s activities by rendering the charitable personnel as grotesque, imposing and molesting
creeps. This scene in particular enacts the characters’ frustrations with the belittling and disen-
franchising premises of the charity model. It also viscerally enacts, in the hot dog hand-stuffing
and throwing, their communal experience and political rejection of this model. Indeed, in this
scene we see performed what Jane Campbell and Mike Oliver identified, in their influential
1996 book Disability Politics: Understanding Our Past, Changing Our Future, as a primary impulse
in the founding of the disability movement: the shared recognition among disabled people “that
neither party politics nor charitable and voluntary organisations were serving their interests
appropriately or well” (62).
Women are outsiders in this play, their stories are mostly absent and what is on offer lacks
the perspectival depth of the other characters. Miss Saunders the nurse, for example, is shown
only as a silly but shrewish figure. Then there is the unseen Thelma, whose alarming cries in
a clear but “spastic” voice from outside the bathroom of “I need a priest” near the top, in the
middle and at the close of the play provide the chief disabled woman’s voice (Freeman 1).
Audiences learn that Thelma has changed from being a person who dressed in pretty clothes
and laughed often into a person who cries routinely for a priest and covers herself in black and
brown “right up to the neck” (18). The change follows a dubious sexual encounter, most likely
rape, she experienced at the hands of Sam. These aspects as well as the bathing suit-clad Miss
Cerebral Palsy and the men’s frequent use of “bitch” and “cunt” to describe women contribute
to what Canadian theatre critic Jerry Wasserman, who had seen the 1973 Vancouver Arts Club
production, argued in 2016 is the “misogyny that dates the script.” Such dated aspects sit in
tension with its apparent continuing resonance: the anniversary Tarragon reading in 2011 and
two recent professional productions (one in Seattle in 2014 and another in Vancouver 2016).
What does the play mean now?
In a 2018 essay, playwright and actor Adam Grant Warren tackles this very question. Cast as
Jim in the 2016 Vancouver production by Realwheels Theatre, a production that claimed to be
the first to “feature a fully integrated cast of professional actors with and without disabilities,”
Warren wrestled with the polarizing ways the script had made him feel over time. As an emer-
ging theatre artist discovering it in 2004 on the advice of a friend, it gave him his first sense of
“the power of bodies like mine on stage […] And there was I, an aspiring theatre-maker who
also happened to have CP, reading Freeman’s words and nodding my head hard enough to give
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myself whiplash.” Encountering the play twelve years later as an established theatre artist, how-
ever, he was surprised to find the play more “whiny” than “righteously indignant” and filled
with what he felt was “thinly-veiled victim dialogue”:
I wondered who exactly this play was still resonating with: those with lived experi-
ence of disability, or those outside that experience, trying to get a look in? And if
they got a look in, what would they see in such an old picture? In the end, would the
audiences applaud the work as a whole, or the “inspiring” efforts of an integrated cast?
And if the latter, wouldn’t that just reflect some of the very same power dynamics that
were present in the workshops themselves? Even if the applause came for both the
work and the “inspiration”, I wasn’t sure that would be enough for me.
Pressing forward in the Realwheels production despite his misgivings, through the creation
process and research, Warren ultimately discovered that where in 2004 he had found in the play
a reflection of his own experience, in 2016, he was struck by his distance from its context: “the
privilege, ability, and uncommon luck that has kept me blissfully ignorant of what sheltered
workshops had meant to their occupants, and to society, just one short decade before I was
born.” Further, he emphasized the profound and prevailing lack of access and opportunities for
so many disabled artists and his own drive to use his talents and platforms to “find, represent,
and help in the making of newer, better work.” As we shall see below, Warren’s activist impulse
connects him to the growing disability theatre activism that now makes it challenging to keep
up with all the related drama being produced or developed. Before exploring this drama further,
it is important to think of how disability arts and cultural activism since the play’s debut has also
helped to date the script.
In the play, Tom scoffed at the idea of Jim only writing for “spastics” as opposed to a larger
world. Moreover, the original play notes provide considerable detail about how actors, clearly
imagined as only non-disabled, should prepare for and perform each character’s disability with
care and consultation with disabled people. These details suggest how the playwright did not
yet allow his characters to value an audience of disabled people nor imagine an artistic produc-
tion team led by and filled with disabled artists. The absent sense of disability theatre commu-
nity, pride, artistic leadership, skill and activism is striking.
The absence is especially at odds with the goals and history of the 2016 producing com-
pany, Realwheels. A multi-award-winning company founded in 2003 by actor James Sanders,
the Realwheels website explains that its mandate is “To create and produce performances that
deepen the audiences’ understanding of the disability experience. […] We tell stories in which
disability itself is not the focus of conflict, but rather forms the landscape upon which uni-
versal issues are debated onstage.” In the middle of his actor training, Sanders had an accident
and became quadriplegic. With regard to theatre, Sanders explains on the Realwheels website
Mission and History section that the attitudinal rather than the physical barriers he faced were
the most challenging. In face of both sets of barriers, however, he persisted in his professional
theatre training and practice. To date, Sanders’ most pivotal stage role was in Skydive (2007), a
play co-developed with award-winning playwright Kevin Kerr as a vehicle for Sanders and his
actor friend, Bob Frazer. In his introduction to the published version of the play, Kerr explains
that together they dreamed of doing a show which challenged tedious convention by, as Frazer
suggested, having the characters enter at the top of the show by “falling from the grid” (10).
To make this possible, Sanders drew from his earlier participation in Vancouver’s KickstART
Celebration of Disability Arts and Culture. An organization that continues to foster disability
arts and culture in the city, the profoundly influential festivals they organized beginning in
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2001 drew disabled artists and allies from across Canada and beyond to build awareness of each
others’ work and to galvanize the Canadian disability arts and culture movement. At KickstART
Sanders met Sven Johansson, who had devised the ES Dance Instrument, an innovation whose
name drew from the Latin “Excedere Saltatio” to suggest “Dance Exceeding Limitations”
(Barr). In his introduction to the published play, Kerr describes the instrument as “essentially
a long pole on a fulcrum” that had allowed Sanders and other festival artists in wheelchairs to
dance, improvise and move freely and artistically in the air (11).The instrument, Sanders argued,
could be mobilized and modified in service of the Skydive artists’ dream. Although the path was
arduous, they followed through with the plan.
Skydive told the story of two brothers, estranged and opposite in temperament, reconnecting
to fulfill their dream of skydiving. Most of the show’s action takes place in the air, a space in
which Sanders’ character seems non-disabled. Unlike Creeps, this play was written specifically
for a professionally trained disabled actor and, through Sanders, its artistic development team
had a connection to and awareness of a growing disability arts and culture community. In this
context, the audience of “spastics” that Tom rejects in Creeps would have been reconsidered and
valued on their own terms and a playwright like Freeman would have benefited from Sanders
and other disabled actors ready to take on roles. Although Sanders left the company in 2014 to
pursue more individual projects, Realwheels has continued to build artistic development and
performance opportunities for disabled artists and their 2016 production of Creeps sought to
continue this pattern. Ultimately, their production won several of the city’s annual professional
theatre awards: Outstanding Production, Outstanding Ensemble Performance and Outstanding
Design. The ensemble, of which Warren was the only cast member with CP, included disabled
and non-disabled actors, some of whom had completed actor training and others who had not.
Carrie Sandahl, in her 2005 article “The Tyranny of Neutral: Disability and Actor Training,”
and Kathy Dacre and Alex Bulmer, in their 2009 article “Into the Scene and Its Impact on
Inclusive Performance Training,” identify the importance of building inclusivity into actor
training as a fundamental goal for disability theatre artists. Many disabled playwrights, for
example, balk at the idea of non-disabled actors “cripping up” to take on the roles of disabled
characters in their plays. It is also extremely frustrating for many to see how often non-
disabled actors win awards for such turns and how often these casting choices are explained
away through arguments about there not being enough talented disabled actors in the casting
pools. For recent Canadian explorations of these ideas, readers might watch a film on Brock
University’s Diversities in Actor Training series focused on ableism or they might listen to the
podcast Walking the Space by Yousef Kadoura, an actor and graduate of Canada’s National
Theatre School who is also a right leg below the knee amputee. Kadoura explains on the pod-
cast that the series aims to “open a conversation about Canadian theatre and its relationship
to its artists who live with a physical disability.” One person Kadoura interviewed was Prince
Amponsah, a Toronto-based actor who trained at George Brown Theatre School and performed
at Canada’s prestigious Shaw Festival. At the age of twenty-seven, he became disabled after a
house fire and in the podcast he speaks about finding his way back to theatre after that. Both
Yousef and Amponsah explore their use of prosthetics and physicality in performance and the
ethics of taking on roles that explicitly involve disability or not. In 2016, both performed in
After the Blackout, a play written by multi-award-winning playwright Judith Thompson.Writing
about the production experience in an article entitled “Disability, Represented” for Intermission
Magazine (2018), Amponsah explained that,
[a]‌s an actor living with a disability –I’m a bilateral arm amputee –I’ve worked on

productions with a mix of able-bodied and disabled actors. But now, for the first
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time, I will be performing with a full cast of actors with varying forms of disability in
RARE Theatre’s After the Blackout.
This realization gave me pause. Why is it that I have had little experience working
with other actors with disabilities? Why is there such a lack of representation when it
comes to the stage and screen?
Amponsah’s question is yet another reminder of the ways in which Canadian disability drama
must be understood in relation to broader disability theatre practice and precepts. Further,
while Amponsah and Kadoura’s podcast discussion centred on physical disabilities and theatre,
it is important to note that Canada has been home to a number of disability theatre com-
panies and other initiatives focused on a range of disability experiences. Toronto’s Workman
Arts (formerly Workman Arts Theatre Project), for example, has been fostering the theatre work
of artists with lived mental illness and/or addiction experiences since 1987. During this time,
they have developed and/or produced over forty plays written from the perspective of people
who have lived experience of mental illness and/or addiction. They also initiated the Madness
and Arts World Festival, held at Toronto’s Harbourfront Centre in 2003, which featured theatre
groups and artists with goals akin to their own from around the world. They then toured their
productions to the next iterations of these festivals in Germany (2006) and the Netherlands
(2010). Although their subjects and styles have varied greatly over time, a hallmark of many
plays created at Workman Arts is how they use innovations in form to challenge long-standing
theatrical patterns that stigmatize mental illness experience.
Canada is home to several other long-standing and important companies with decades
of experience fostering the drama of disabled theatre artists. A highly influential example is
Calgary’s Stage Left Productions, led by Artistic Director Michele Decottignies and best known
internationally for the searing production, Mercy Killing or Murder: The Tracy Latimer Story (2003).
This play sought to redress an imbalance in the media coverage of the landmark Canadian legal
case centred on Robert Latimer, a man who in 1993 killed his twelve-year-old daughter, Tracy,
a child with cerebral palsy who experienced seizures as well as severe mental and physical dis-
abilities. Noting the near absence of disabled voices in the public debates and media coverage
of Tracy’s murder, the play centred around disabled people’s perspectives and the role the media
can play in making sure that disabled people are heard as valued, human citizens. The published
version and supporting discussion in Canadian Theatre Review (2003) provides details of the
many ways that the company imbricated access into the development and production process,
seeking to ensure that the voices of disabled people were front and centre for audiences.
Another long-standing disability theatre company is Vancouver’s Theatre Terrific. Since 1985
it has fostered the playwriting and theatre practice of disabled artists. One of their plays, The
Glass Box (2009) devised by Kyla Harris, Watson Moy and Susanna Uchatius was recently
included in leading Canadian performance scholar Erin Hurley’s Once More, With Feeling: Five
Affecting Plays (2014). The Glass Box is particularly remarkable for its direct, sometimes playful
and sometimes searing, interrogations of disabled sexualities. Drawing both from real- life
experience and invention, the three main characters perform as fictionalized versions of them-
selves as well as their famously hyper-sexualized alter egos: respectively, Cleopatra, Brad Pitt and
Sophia Loren. In her introduction to the play, Allison Leadley notes how Harris’s character holds
a binder with “standardized criteria” that she references to keep score of the various ways each
character answers questions under the bright lights of the glass box and celebrity tell-all style
game show (154). Many of the questions turn on what Leadley describes as “inquiries about
their past sexual encounters, their desires for future sexual experiences, and their expectations
of romantic partnerships” and their responses are measured by a “scoring system (with points
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for personal grooming, bodily functions, musical taste, disposition, loyalty, and expected life
span) as well as ‘the rules for rehabilitation after trauma’ (these include instructions to ‘enjoy
the process,’ maintain ‘realistic expectations,’ and prepare the body before sex)” (152). Read
against Creeps, the play is remarkable for its mingling of diverse disability experiences, frank
discussions of sexuality from male and female perspectives and playfulness with profoundly
public spaces rather than private bathrooms. Familiar currents from Creeps, however, are evident
in the characters’ attention to disabled bodies’ most basic functions, fierce rejection of belittling
assumptions about disabled people’s worth and blunt challenges to the normative and medical
model framings of the body found in the binder.
While Theatre Terrific, Stage Left and Workman Arts have sometimes involved artists who
have Deaf experience, this has not been a major focus of activity. It is important to note that
Canada does not yet have a National Theatre for the Deaf akin to that in the US. However,
several important artists are active in the field. In 2016, writer Adam Pottle’s play Ultrasound was
brought to the stage by Cahoots Theatre and Toronto’s Theatre Passe Muraille. On his website,
Pottle explains that the play considered “the consequences of eugenics through the Deaf experi-
ence, and asks the question, ‘in what circumstances would someone not want a child because
it was normal?’.” The drama follows a couple as they attempt to conceive a child and debate
whether they would prefer to have a Deaf or hearing child. Audiences attending the production
had access to ASL from the moment of their arrival at the theatre and the play was performed
in English and ASL with surtitle captions above the stage and projections enriching the story-
telling throughout. In fact, the production inspired Cahoots Theatre to develop and share the
Deaf Artists and Theatre Toolkit (DATT), a free online resource described on the Cahoots
Theatre website as aiming to serve “as a resource and guide to increase innovative collaborations
between professional theatre companies and Deaf artists as well as to increase engagement with
Deaf audiences.” Actor Chris Dodd, cast as the play’s Deaf male lead, Alphonse, has also sought
to improve theatre opportunities for Deaf audiences and artists, founding in 2017 Edmonton’s
annual Sound/Off Festival, a national event showcasing Deaf performing arts. Seeing Voices
in Montreal is another hub aimed at building theatre and other professional opportunities for
Deaf/deaf community, a group they describe on their website as including “Deaf, hard-of-
hearing, orally Deaf, and deafened people.” The group has produced two musicals and in 2018
hosted a conference entitled “Awakening Deaf Theatre in Canada” which brought US and
Canadian artists together to learn and plan together.
As the many plays and initiatives cited above suggest, contemporary play development
happens in conjunction with disability arts and cultural activism and innovation in the theatre
sectors. In a 2017 article entitled “From Republicans to Hacktivists: Recent Inclusion Initiatives
in Canadian Theatre,” I argued that the 2015 and 2016 seasons were something of a watershed
moment for these efforts and disability theatre practice in Canada. Several professional theatre
and national funding institutions joined with disabled theatre artists to re-imagine how theatre
might be developed, funded and produced in accessible and inclusive ways. Much of the early
work had been led by grassroots initiatives and passionate individual artists operating without
the benefit of targeted national, financial and infrastructural support. In 2008, however, the
Canada Council for the Arts hired disability arts and culture activists Rose Jacobson and Geoff
McMurchy to research disability arts. Their 2009 report, Focus on Disability and Deaf Arts in
Canada, as well as its updated version in 2011, helped to move the council’s overall strategic plan
in the direction of greater Deaf and disability arts support, efforts they continue to research and
implement today. In addition, from 2016–17, Canada’s National Arts Centre English Theatre,
co-curated by Sarah Garton Stanley and Syrus Marcus Ware, brought together artists, activists,
research and cultural leaders through a two-year cycle of events entitled Deaf, Disability and
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Mad Arts: Changing the Shape of Canadian Theatre. Two highly successful playwrights, Jan
Derbyshire and Alex Bulmer, were among the many artists making valuable contributions at
these and other such culturally galvanizing events in this period. Although they are far from
the only contributors, both have shared valuable ideas about disability theatre dramaturgy and
infrastructure over time.
With the leadership of playwright, dramaturg and Inclusive Design expert Jan Derbyshire,
in 2015,Vancouver’s Playwrights Theatre Centre (PTC) created the ACK Lab. Supported by a
Literary Managers and Dramaturgs of America Bly Creative Capacity grant as well as a Canada
Council Leadership for Change grant, the PTC ACK Lab aimed to challenge conventional
theatre and dramaturgical practices. Derbyshire claims the phrase “flipping the familiar,” as a
central animating principle for her work and in her 2016 Theatre Research in Canada article,
“Infrequently Asked Questions, or: How to Kickstart Conversations Around Inclusion and
Accessibility in Canadian Theatre and Why it Might be Good for Everybody,” she explains this
idea further:
In theatre this manifests as a driving obsession to look for artistic practices and models
that work well for institutes, companies, and creators and ask: is this the way you’ve
always done things? It’s a good question to start the rock rolling on issues of diversity,
inclusion, and accessibility. (263)
So many of Derbyshire and PTC’s infrequently asked questions find connections both to
Stroker’s and Hansen’s call for basic access, as well as the animating principles of disability
arts and cultural activism in Canadian theatre. Freeman detailed the material disabling forces
of the charitable model of disability. So too the recent initiatives centre on artistic practice
and reject fully any sense of the charitable model explored in Creeps. Rather, these questions,
calls for reform and innovative creative practices all aim to put disabled people at the centre
of theatre creation, while also acknowledging theatre’s long histories of inaccessibility and
disabling traditions. For these reasons, Derbyshire connects the ACK Lab name to hacker
culture,
where everything isn’t made from scratch but rather pieces of know-how and tools are
repurposed to achieve something new. We quickly realized that trying to work with
specific writer’s needs and ways of working is already a long-held principle of skilled
dramaturgy. What we didn’t understand was how much the physical world would
affect the needs of our artists’ preferred way of working. (267)
Practically, for example, Derbyshire noted how granting agencies’ typically intensive timelines
are not often aligned with the temporal needs of disabled artists. What would it mean if drama-
turgy workshop times were designed around specific disabled artists’ travel, labour and creative
requirements? Moreover, what might the best practices be to insure that disabled actors and
other theatre artists have the opportunity to join the workshop process fully? PTC used their
annual Writers’ Colony as a testing ground for their questions and focused their efforts to
support disabled playwrights Heidi Janz, Janet Hinton and Adam Grant Warren. For Derbyshire,
a primary goal of this 2015 session was to make sure Janz, Hinton and Warren had the oppor-
tunity to work with professional designers early in their process because she felt too many
disabled playwrights only ever get to work with shoestring budgets and do not get to experi-
ence what full production design can bring to the creative process, especially in the workshop
rather than the production phase.
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Most recently at time of writing, Derbyshire performed her play Certified at Vancouver’s
Cultch Theatre whose website promoted it as follows:
Comedian and certified insane person Jan Derbyshire turns the audience into a mental
health review board to help determine her current state of sanity. Join the irreverent
fun of Jan’s hilarious and heart-aching journey through the mental health system.
Together, we grapple with hefty questions like: how do we define “crazy” and who
gets to decide? In this case: you do.
A highly participatory event with a narrative arc that oscillates between hilarious and harrowing
autobiographical details, Certified is an expertly crafted performance and exploration of
legal, medical, philosophical and disability-led discourses concerning the concepts of sanity
and insanity. Derbyshire has toured the play to many places including, earlier in 2019, the
FoldA: Festival of Live Digital Arts held in June 2019 at Kingston, Ontario. In this context,
Derbyshire livestreamed the play so that remote audiences could participate online. Although
the FoldA events were not solely focused on disability arts, there were efforts to be inclusive
and accessible. A further livestreamed FoldA event which included disabled performers was
entitled, “Unsettling Dramaturgy: Crip and Indigenous Process Design in the Studio, on the
Stage.” Here, an international complement of artists participated live and online in discussions
aimed at exploring and articulating the best decolonizing, accessible and inclusive dramaturgical
protocols and practices. Such discussions are critical for the development of the field.The digital
facilitation, international participation, inclusion of a broad spectrum of disabled experiences
and intersectional conversations suggested exciting futures, as yet imagined either in the discus-
sion of art in the bathroom in Creeps or in the design of the 2019 Tony awards.
Playwright, actor, director, dramaturg, vocal trainer and disability arts and cultural activist
Alex Bulmer has worked professionally both in Canada and the UK. A self-described “blind
theatre artist and inclusive arts consultant,” like Derbyshire, Bulmer’s most recent creative and
activist efforts in 2019 were also featured at FoldA and then later in Vancouver, in Bulmer’s case
at the Theatre and Accessibility in a Digital World conference sponsored by the Canada Council
and co-produced by Vancouver’s ArtsClub and Bard on the Beach theatres. In both places, she
presented May I Take Your Arm?, a tactile immersive performance installation that she developed
with Red Dress Productions. The latter’s web page cites a key question behind the produc-
tion: “If we walk together, does the way we ‘see’ our neighbourhood change?” Building from
the stories shared by neighbours whose arms Bulmer took to get to know her Toronto neigh-
bourhood better, the show mingled pre-recorded audio, live performance, live-streamed video,
live audience participation and miniature, tactile (some edible!) sets and properties to represent
the key sites of the neighbourhood tours. Designed to be interesting for blind audiences and
others, on the Red Dress Productions company website the artists explain that the production
aimed to explore “interdependence, relationships between people, our relationship to the St.
James Town and Cabbagetown neighbourhoods in Toronto, and the land upon which these
neighbourhoods are settled.” Bulmer’s work on this project and its explicit connectedness to the
land is striking in view of her trajectory and past works.
In 2000, Bulmer’s now twice-published play, Smudge, was first produced, like Creeps, at
Tarragon Theatre and nominated for the same Floyd S. Chalmers award that Freeman had won
in 1971 as well as Toronto Dora Award for Best New Writing and Best Production (Bulmer,
“Smudge,” 67). A one-act play for three actors, it traces the romantic, medical and comedic
escapades of Freddie, a woman who, like Bulmer, experiences vision loss. With a long history
in theatre both before and after her vision loss, Smudge played a critical role in Bulmer’s artistic
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development: “Writing the play made me realize –and fear –how much I love theatre, which
I’ve been drawn to my whole life. I thought my connection with the arts was over when my
sight disappeared, but I’ve survived. It’s been vital to write about it, to reproduce it as a useful
experience” (qtd. in Kaplan). Moving between the UK and Canada to find and advocate for
better disabled access to the arts both on-and offstage, Bulmer has worked with Graeae Theatre,
Channel Four and the BBC in the UK as well as Toronto’s Cripping the Stage and Picasso
Project. She first left Toronto due to the profound inaccessibility she experienced in the arts
sector once she began to lose her vision. As she explained to interviewer Diane Flacks in 2009,
however, through Graeae and the UK’s Access to Work program, she was able to work and
develop professionally and produced a significant body of work. She returned to Toronto in
2008 to help with the collaborative project The Book of Judith, a play that featured disabled and
non-disabled performers and turned around the late inclusion activist Judith Snow. Since that
time, Bulmer has been involved in many efforts to improve theatre access onstage and off for
disabled, Deaf and Mad people. However, writing about one such initiative, the 2015 Republic
of Inclusion in Toronto, she expressed ambivalent feelings about having to keep doing this
work: “with so much exposure to inclusive practice in the UK, contrasted with so little yet in
practice to liberate participation in Toronto, I felt, and often do feel in Canada, like a pulled
sling shot held permanently back in grip (a rather poetic description of how it can feel when
disabled)” (Bulmer, “Inclusion,” 261). For Bulmer, the strongest means for releasing this grip and
building inclusion are desire and resilience: “to not only create desire but also to protect it, and
thus to engender resilience” (262). In Creeps, Freeman showed us desire:
Jim: I want to be a writer

Car son: (To Sam and Pete)
Quit fooling around, and hurry up
Jim: I want to be a writer!
Car son: You are a writer.
Jim: You don’t understand. I want to make my living from it.
Car son: Maybe you will, some day. But it’s not going to happen overnight, is it?
Tom: If you stay here, Jim, it won’t happen at all. (37)
Perhaps it is this spark of desire at the play’s narrative core and Freeman’s own evident resilience
in bringing it to the stage so many decades ago that accounts for Creeps’ continuing resonance
with some artists and audiences. Certainly, the field of Canadian disability drama produced
since then is rich, varied, complex, powerful and compelling but there are without question
thousands of further sling shots (held back by far more than absent stage ramps and inaccessible
bathrooms) with the potential to impact the stage in much-needed and exciting ways.
Works cited
Albert, Lyle Victor. Scraping the Surface: Three Plays by Lyle Victor Albert. Edmonton: NeWest Press, 2000.
Amponsah,Prince.“Disability,Represented.”Intermission Magazine. 9 May 2018.www.intermissionmagazine.
ca/author/prince-amponsah/.
Barr, Elinor. “Sven Börje Johansson.” The Canadian Encyclopedia. Historica Canada: 2019. www.
thecanadianencyclopedia.ca/en/article/sven-borje-johansson. 2015.
Bulmer, Alex. “Inclusion: Building a Culture of Desire and Resilience.” Theatre Research in Canada, vol. 37,
no. 2, Fall 2016, pp. 260–265.
———. “Smudge.” Canadian Theatre Review, no. 108, Fall 2001, pp. 52–67.
Cahoots Theatre. http://cahoots.ca/datt/. n.d.
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Campbell, Jane and Mike Oliver. Disability Politics: Understanding Our Past, Changing Our Future. 1996.
Routledge, 2013.
Canada Council.https://canadacouncil.ca/research/research-l ibrary/2 018/0 5/d eaf-a nd-d isability-a rts. n.d.
Dacre, Kathy and Alex Bulmer.“Into the Scene and Its Impact on Inclusive Performance Training.” Research
in Drama Education: The Journal of Applied Theatre and Performance, vol. 14, no. 1, Feb. 2009, pp. 133–139.
Decottignies, Michele. “Mercy Killing or Murder: The Tracy Latimer Story.” Canadian Theatre Review, no.
122, Spring 2005, pp. 67–88.
Derbyshire, Jan. “Infrequently Asked Questions, or: How to Kickstart Conversations Around Inclusion
and Accessibility in Canadian Theatre and Why it Might be Good for Everybody.” Theatre Research in
Canada, vol. 37, no. 2, Fall 2016, pp. 263–269.
———. Certified. Performed by Jan Derbyshire, Cultch Theatre,Vancouver, 3–16 Nov. 2019.
Flacks, Diane. “Having Cultivated Her Talent Abroad, Alex Bulmer Plants Her Creative Seed Here.” Toronto
Star, 26 May 2009.
Folda.ca. www.folda.ca/event/may-i-take-your-arm/. n.d.
———. www.folda.ca/event/certified/. n.d.
Freeman, David. Creeps. University of Toronto Press, 1972.
Johnston, Kirsty. “From Republicans to Hacktivists: Recent Inclusion Initiatives in Canadian Theatre.”
Research in Drama Education: The Journal of Applied Theatre and Performance, vol. 22, no. 3, 2017, pp.
352–362.
———. “Introduction: Performance and Disability.” Theatre Research in Canada, vol. 37, no. 2, Fall 2016,
pp. 151–156.
Kadoura,Yousef. www.walkingthespace.com. n.d.
Kaplan, Jon. “Alex Bulmer’s Groundbreaking Smudge Goes Inside the Mind’s Eye. Sight Unseen.” Now
Magazine, 16 Nov. 2000.
Kerr, Kevin. Skydive.Vancouver: Talonbooks,  2010.
Leadley, Allison. https://brocku.ca/diversities-in-actor-training/artists/#allison.
———. “Introduction to The Glass Box by Theatre Terrific.” In Once More with Feeling: Five Affecting Plays,
edited by Erin Hurley, Toronto: Playwrights Canada Press, 2014, pp. 149–194.
Lewis, Victoria Ann. Beyond Victims and Villains: Contemporary Plays by Disabled Playwrights. Theatre
Communications Group, 2006.
Paulson, Michael. “Ali Stroker on Winning the Tony: ‘I Was Meant to Be in This Seat’.” New York Times,
12 June 2019.
Picard, Andre. “Vancouver Airport Wins New Hansen Prize.” The Globe and Mail, 12 June 2004.
Pottle, Adam. http://adampottle.com. n.d.
Realwheels. Realwheels.ca. n.d.
Red Dress Productions. https://reddressproductions.org/current-projects/may-i-take-your-arm/. n.d.
Salam, Maya. “Ali Stroker Makes History as First Wheelchair User to Win Tony.” The New York Times, 9
June 2019.
Sandahl, Carrie. “The Tyranny of Neutral: Disability and Actor Training.” In Bodies in Commotion: Disability
and Performance, edited by Carrie Sandahl and Philip Auslander, University of Michigan Press, 2005,
pp. 255–267.
Seeing Voices Montreal. www.seeingvoicesmontreal.com/awakening-conference. n.d.
Shain, Alan. Time to Put My Socks On. Perf. Alan Shain. Big Secret Theatre, Calgary. 2–5 December 2009.
Warren, Adam Grant. “The Long, Loud Resonance of Creeps.” 6 March 2018. Spider Web Show Performance.
10 June 2019.
Wasserman, Jerry. “Review: Creeps Remains a Powerful Inside View of the Disabled.” Vancouver Sun, 2
December 2016.
Workman Arts. www.workmanarts.com. n.d.
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22
DISABILITY AND
THE AMERICAN STAGE
MUSICAL
Samuel Yates
Broadway musicals are an art form and industry that rely on “triple-threat” performers with
exceptional skills in acting, dance, and music –as well as stamina –to consistently execute
as many as nine performances a week. An able body is at the center of musical theatre per-
formance yet disabled characters are everywhere in the musical theatre genre: conjoined twins
dancing on vaudeville stages; wheelchair users longing to walk; chronic illnesses threatening
death; even Dorothy’s traveling companions in Oz lack brains, heart, and nerve –parts vital for
bodily functions. More recently, these generic expectations pressuring the human body were
underscored by theatre artists and critics when Ali Stroker, the first wheelchair-using actor on
Broadway, appeared in Deaf West’s 2015 Revival of Spring Awakening. In a production where
the primary means of communication is the physical grammar of American Sign Language, it
was the visual presence of Stroker’s chair that marked her as nonnormative –atypical, disabled –
and challenged prioritizations of the conventional dance and physical movement vocabularies
musicals are built upon. Now, theatre scholars and practitioners are debating the merits of
diversifying casting with disabled performers and critiquing representations of disability by
able-bodied actors.
In disability studies, scholars have transferred the logic of the disability rights rallying cry
“Nothing about us without us!” to the field’s contact points with performance studies by pro-
viding a disability-as-performance framework (Charlton 3–4). This scholarship foregrounds the
performances of everyday life disabled persons enact, art-framed work by disabled performers,
and the disability metaphors organizing narrative and imagery in dramatic literature (Kuppers
2003 and 2017; Sandahl and Auslander 2005; Johnston 2016). Music theatre scholars invested
in identity-oriented approaches have argued embodied difference carries epistemological and
material weight during encounters in live performance, but this material turn towards the body
leaves disability’s relationship the genre itself unaddressed (Fox 2015; Knapp 2015; Sternfeld
2015; Wolf 2011). As a result, current scholarship foregrounds disability in musical theatre as
either a “narrative prosthesis,” David T. Mitchell and Sharon L. Snyder’s formulation of the
use of disability “throughout history as a crutch upon which literary narratives lean for their
representational power, disruptive potentiality, and analytical insight,” or it is a battleground for
equitable industry and cultural representation (50). Such projects offer actionable solutions for
diversifying individual theatrical productions but without an adequate analysis of how musical
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theatre –as a genre and as an industry –is built around expectations of able-bodied perform-

ance little headway can be made towards implementing change.
This chapter does not seek to provide a comprehensive history of all disabilities informing
the American stage musical.1 That project is nearly impossible without acquiring or claiming
knowledge of individual writers and performers’ personal relationship to disability, which
would require either compelled medical disclosures or inaccurate armchair diagnoses. Both
pathologize difference and reify the able body in harmful, damaging ways. Instead, I offer a brief
history detailing the emergence of the able-bodied triple-threat performer and discuss two pri-
mary modes of disability representation in musical theatre: narrative prosthesis, or a dependency
on metaphors of disability, and disabilities woven into the fabric of a character and plot that
compel physical performance onstage –what I am calling diegetic disabilities. This leaves signifi-
cant issues unaddressed, including the reductive conflation of disparate disabilities, a dearth of
artistic training for disabled actors, and the dire state of disability access in many professional
theatres. Acknowledging these gaps, this chapter is intended to open conversations regarding
the organization of musical theatre around the able body and begin to answer how and why
disability is a significant concern of the American stage musical.
The triple-threat performer

Book writers, librettists, composers, choreographers, directors, critics, and fans imagine actors
in musical theatre to be exceptionally able-bodied: a performer must have a keen memory
for lines of dialogue, an intuitive skill for conveying social relationships with affective nuance,
a good ear for music and voice trained to withstand the rigors of singing scores for multiple
hours each day, the coordination and muscle memory to participate in complex stage blocking
and choreography, and the intellectual stability to complexly realize the life of a character and
still maintain her own social life outside of the theatre.This constellation of excellence in acting,
dancing, and music –commonly referred to as a “triple-threat” –while invested in the historical
expression of the musical theatre art form that emerged from vaudeville variety shows in the
early twentieth century, is predicated on expectations of the performer’s bodily congruity with
a kind of exceptionalism or athletic productivity.
Why is it that we do not expect to find disabilities on the Broadway stage? Assumptions that
all disabled people are chronically “unwell,” and the expectation that if a disabled performer
is capable of offering a high-octane, enjoyable performance she must somehow be “faking
it,” undergirds the logic of many producers, artists, and audiences. One reason for this is the
anticipation of bodies functioning only as described by a medical diagnosis (one element of
what is, in disability studies, called the medical model of disability); another is the government-
perpetuated trope of the “welfare queen” who fraudulently collects disability payments without
being “really disabled.” Both stigmatize disability and police its public expression. However,
disability and questions regarding the proper limits of human capability have been addressed
onstage since what is often considered to be the American stage musical’s earliest moment: the
1866 production of The Black Crook.
Produced at Niblo’s Garden, the five-hour spectacle was a combination of ballet, music,
and other entertainments organized around a traditional melodramatic plot written by Charles
M. Barras. Amina and Rodolphe are lovers but the jealous Count Wolfenstein wants Amina for
himself, so he devises a plan with Hertzog –a crookbacked wizard who provides the devil with
new souls in exchange for eternal life –to sacrifice Rodolphe to the demon Zamiel.This mutu-
ally beneficial deal would remove Rodolphe as Wolfenstein’s competition for Amina’s affections
and provide Herzog with his annual sacrifice. Through a series of (mis)adventures Rodolphe
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Disability and the American stage musical
escapes with the help of a fairy queen to be reunited with his love, while Wolfenstein is defeated
and Herzog is condemned to hell since he cannot fulfill his Faustian bond. Although, as Ethan
Mordden argues, The Black Crook “wasn’t the first anything and wasn’t even a musical,” the pro-
duction is nonetheless a functional benchmark due to its box office success while combining
melodramatic plot, music, and spectacle (15). As such, its depiction of Hertzog marks a starting
point for our understanding of disability in the American stage musical.
A production note in The Black Crook’s 1866 prompt book notes that as the titular “Black
Crook” of the spectacular, “Hertzog is a hideous deformity, with leaden complexion, humped-
back, knotted limbs, crooked body and lame” (Barras 3). Made “lame” by his “crooked body,”
Hertzog is apparently unwell. His disability marks his turpitude –an iteration of the trope of
the villain’s distorted nature manifesting itself in his outward appearance. Hertzog’s “black” hue
and “leaden complexion” would have been classically regarded as an indicator of a melancholic
temperament, first classified by the Greek physician-philosopher Hippocrates as a component
of humorism and still referenced throughout the nineteenth century. Today, melancholia adds
an additional dimension to the mental health concerns explored in this piece, as it is considered
a depressive mode. It would be difficult not to read this note as offering racial markers although
there is no evidence that C.H. Morton, who originated Hertzog, was a nonwhite actor or to
suggest he played the role with minstrel stylizations (“Playbill”). As a melodramatic villain, then,
his blackened coloring quickly distinguishes him amid the spectacular’s colorful surroundings.
Significantly, the phrasing of the note does not say Hertzog has a deformity; Hertzog himself is
the deformity. The descriptor “hideous” is as much a design specification for the costumer as it
an aspect that should inform the director’s blocking and other actors’ responses in order to elicit
a desired aesthetic judgement from the audience.
Together, Hertzog’s nonnormative coloring, awkward physical movements, and “crooked”
silhouette create a hideously disabled man, which presumably makes his quest for immortality
all the more audacious. His body is not only figured as disabled. It is important that Hertzog also
transgresses human nature in his quest for an unnaturally long life; the latter action presumably
forecloses sympathy for or empathy with the aging wizard. This strategic management will be
significant to my discussion of diegetic disabilities later in this chapter; for now, however, we
must remember Morton’s portrayal of Hertzog’s disability would be received as heroically vir-
tuosic –a predecessor of contemporary expectations on the triple-threat performer.
“Triple-threat” is now a staple theatre term signifying excellence in singing, acting, and dan-
cing, but its origins come from another discipline that prizes able-bodied prowess: American
football. The Oxford English Dictionary attributes its first use to W.H. Baumer’s 1939 text Sports
as Taught & Played at West Point. Baumer uses “triple-threat” to indicate an individual players’
skill in running, passing, and punting; the phrase was clearly already in common parlance, as
I have found it in newspapers sports columns as early as 1916 (“Football”). By the late 1930s the
phrase crossed over into the performing arts, although it still connoted being multiply skilled.
A November 1937 review of the Victor Schertzinger-directed musical comedy Something To
Sing About describes Evelyn Daw as a “triple-threat leading lady who sings, dances and acts”
(“Cagney”), and the phrase was deployed less than a year later as a pun in George Ross’ article
“In New York”: “Overheard at a local nightspot: ‘She’s a triple-threat entertainer. She can’t
sing, she can’t dance, she can’t act.’ ” (7). Ross’ joke plays more on the idea of the entertainer
being a “threat” due to the unnamed actresses’ multiple deficiencies. Though set in oppos-
ition; their wordplay on “triple-threat” realizes an expectation of the exceptionally able-bodied,
skilled performer. In 1941 the term was nationally concretized in Life magazine. The now-
iconic August 11th edition showcases Rita Hayworth on the cover, relaxing on a beach while
wearing a two-piece bathing suit, and inside, a nearly-full page photograph of Hayworth in a
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Samuel Yates
form-fitting negligee, kneeling “on her own bed in her own home” (33). These images, styled
to highlight Hayworth’s physical fitness, aesthetic beauty, and presumed sexual availability, are
accompanied by the headline “Rita Hayworth Rises from Bit Parts into a Triple-Threat Song
and Dance Star.” Proclamations of Daw and Hayworth’s skill, accompanied by photographic
evidence of their virtuosic fit bodies, underscore the connection between audience optics
and able-bodied performance burgeoning at the beginning the 1940s –Broadway’s Golden
Era. Now, telegraphing personal health and physical ability are calling cards for contemporary
Broadway performers.
The economic consolidation of roles that would, in earlier decades, have been filled by many
actors instead of one is predicated on the physical ability of the single, virtuosic performer. This
shift in casting practices is predicated on two principles: smaller casts (and therefore lower pro-
duction costs) and physical fitness. Actors, singers, and dancers have long been frowned upon
when they openly acknowledge the physical taxation of their work. Complaint goes against the
performance subculture embracing injury, pain, and tolerance in deference to the appearance of
physical prowess; it puts an individual at danger of losing her job; and potentially results in an
actors’ physiological “disruption of self ” when she is unable to perform the triple-threat ideal
(Mainwaring et al. 105). The athletic coding of the triple-threat is not limited to the theatre;
ESPN Sports Science, for example, recently collaborated on a series of biometric studies with cast
members in Disney’s The Lion King (2016). The results measured actors against top professional
athletes, and found their power and agility to be comparable or better: dancer Lamar Baylor
spins 35 percent faster than the Dallas Cowboy running back Ezekiel Elliot, while India Bolds
covers an average distance of 2.68 miles per show –more than NBA all-star Steph Curry’s game
average in the 2015–16 season (Cingari).
The rhetoric of athleticism is not arbitrarily imposed: it is deeply ingrained in artistic
subcultures in which Broadway actors position themselves as triple-threat performer closer
to the football player of the phrase’s origins than the artist we might expect. In a November
2016 episode of the popular musical theatre podcast The Ensemblist, actor Pearl Sun describes
the taxing work of performing the leading role of bipolar Diana Goodman in Next to Normal
(2009): “It becomes a marathon –you really have to pace yourself in a different way, to make
sure that you’re taking care of yourself when you’re not onstage, so that you can pull that out
eight times a week” (Brady and Lanzarone). Given the training, repetition, pacing, and stamina
it takes to perfect and perform onstage for three hours eight times a week, the metaphor of
running a marathon is not a particularly surprising one. For Cynthia Erivo, Celie in the 2015
revival of The Color Purple, the actor “should stay fit for the job, not let the job make [her] fit.”
She explains: “If your body is working correctly and then you get a cold or something, that cold
probably won’t knock you out as hard as it would have if you weren’t healthy. Keep yourself fit
and you’ll be able to do the job” (Moseley). Of course, Erivo may be an exception –the actor
ran the 2016 Brooklyn half-marathon in 1 hour, 48 minutes, and then performed Saturday’s
matinee and evening performances (Stewart).
Why should a discussion of disability in musical theatre first grapple with able-bodied triple-
threats? The ableism structuring commercial theatre practices must be included in our analysis
of how disability operates in Broadway musicals because the able body is the illusory norm
dictating how roles are written, performed, and received. Ableism sets the stage for tropes of
dis-ease with disease, institutionalization, inspiration-porn, and disposability to be unchecked,
exploited, and reiterated. In theorizing the triple-threat as a hyper-able performer, one stum-
bling block I must acknowledge is that the individual actor may in fact have various nonvisible
disabilities and/or chronic illnesses shaping their performance. What to make of the exceed-
ingly capable triple-threat actor who may have a nonvisible disability related to information
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processing, hearing, sight, or any number of other vectors? How do disability aesthetics work in
and against the economic unit of the triple-threat? Drawing attention to the paradox the triple-
threat performers enacting disability highlights the potential for disability aesthetics to undo
and rebuild the “world of the play,” generating new dramatic texts and theatrical performances
with nuanced, inclusive, disability representations, dreams, politics, and language. It is more
difficult –but realistic –then, to view access to alternative bodyminds as the musical’s radical
cripistemological move: breaking material and affective barriers by sharing in live performances,
generating shared experiences in specific geographic and sociopolitical contexts: “This reiter-
ation builds worlds. It proliferates ‘reals,’ or what I call worlds, and establishes the groundwork for
potential oppositional counterpublics” (Muñoz 196).
Disability as a metaphor
The most common example of disability in musical theatre is a rhetorical invocation in
musicals in which there are otherwise no disabled characters at all. We can easily find
examples of ableist language in everyday speech: a movie may be “lame,” a highway can be
“crippled” by a snowstorm, your “psycho” neighbor or co-worker, and many more besides.
It is not surprising, therefore, to hear characters in musicals using similar language; the stage
is a refraction of our own reality. Such examples are usually intentionally benign, which is
to say that we are so desensitized to the use of disability as a referent point that disable-
ment is frequently not an intended insult but, instead, reveals some aspect of an able-bodied
character’s nature or action. The problem with such references is that they linguistically
reinforce and disseminate a hierarchical preference for able bodies and normative cognition
over disabled and neurodiverse persons.
Librettos commonly use disability metaphors as a shorthand for understanding love. Musicals
with ostensibly healthy, able-bodied characters like April, Cathy, and Marta in Company (1970)
and Bobby in Crazy For You (1992) sing familiar invocations of the love-as-madness or “love-
sick” tropes in “You Could Drive A Person Crazy” and “K-ra-zy For You,” respectively. Even in
productions with visibly disabled characters, such as the 2014 revival of Side Show, disabilities
describe the recognition of love: conjoined twins Daisy and Violet use other forms of physical
disablement to articulate their affections for Terry and Buddy after receiving their first kiss.
Daisy sings how “nothing they’re saying /is catching my ear” while Violet proclaims, “And I’m
virtually blind /No more room in my mind” –all because “He kissed me” (Russell et al. 62).
The ableism entrenched in these metaphors is arguably easier to find when disabled characters
sing them. In Side Show’s original 1997 Broadway script The Boss sings “Crazy, Deaf, and Blind,”
before the Hiltons incorporate these words into their own vocabularies. The idea of crazy, deaf,
of blind uses mental illness and sensory disabilities to explicitly privilege able-bodiedness.
In Stephen Schwartz and Joseph Stein’s The Baker’s Wife (1989), Geneviève is a young and
flighty wife of the much-older baker, Aimable Castagnet. Although the musical never ran on
Broadway, despite a strong cult following, Geneviève’s Act I song “Meadowlark” is popular in
audition rooms, concert circuits, and cabarets. At a pivotal point in the first act when Geneviève
considers leaving her husband, Aimable, for the younger, handsome chauffeur Dominique, she
recalls a tale from her childhood:
WHEN I WAS A GIRL, I HAD A FAVORITE STORY

OF THE MEADOWLARK WHO LIVED WHERE THE RIVERS WIND
HER VOICE COULD MATCH THE ANGELS’ IN ITS GLORY
BUT SHE WAS BLIND, THE LARK WAS BLIND (Schwartz and Stein 53)
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Geneviève sees herself as the blinded meadowlark, applying the fate of blind bird and its death
to her own life. Disability scholars Mitchell and Snyder have framed invocations of disability like
the kind Geneviève sings as a narrative prosthesis, a “crutch upon which literary narratives lean
for their representational power, disruptive potentiality, and analytical insight” (49). Theatrical
performance is not a literary narrative Mitchell and Snyder explicitly explore in Narrative
Prosthesis: Disability and the Dependencies of Discourse (2000), but we might think of the con-
temporary book musical as doing similar work through the integrated libretto and score. Book
musicals use song to advance the plot, and in The Baker’s Wife “Meadowlark” is not simply a
citationally reflexive expression of Geneviève’s inner life –she contemplates the fate of the blind
meadowlark and uses the song to arrive at the decision to leave Amiable for Dominique as the
number builds towards to its final, triumphant crescendo.
Geneviève, recalling the lark’s death after refusing the sun god’s offer, sees herself as the
meadowlark and rescripts the story at the critical moment of decision-making –the lark feels a
sense of duty to stay with the old king but Geneviève decides to “fly away” with her “beautiful
young man” Dominique.While her decision reveals how blindness functions as a representational
shorthand for the audience and an analytic tool for Geneviève, it also demonstrates the “dis-
ruptive potentiality” Mitchell and Snyder describe. Geneviève, perhaps willfully, misunderstands
the meadowlark’s death:
BUT THE MEADOWLARK SAID NO

FOR THE OLD KING LOVED HER SO
SHE COULDN’T BEAR TO WOUND HIS PRIDE
SO THE SUN GOD FLEW AWAY
AND WHEN THE KING CAME DOWN THAT DAY
HE FOUND HIS MEADOWLARK HAD DIED
EVERY TIME I HEARD THAT PART I CRIED… (Schwartz and Stein 54)
In the context of her decision to leave Amiable for Dominique, Geneviève’s interpretation of
the childhood fable makes it seem as though the lark dies of a broken heart after refusing the
sun god. Her tears are not for the old king, who mourns the beloved lark upon his discovery
of her death, but for the lark herself who has sacrificed a presumed happiness in duty to the
king. The lyrics themselves, however, suggest that the covetous sun god kills the meadowlark
for her refusal of his advances to “dance on the coral beaches, [and] make a feast of the plums
and peaches” (54). Given that the thought of wounding the king’s pride is the only thing the
meadowlark “couldn’t bear” we can logically assume she could bear living without the sen-
suous pleasures the sun god offers. This means she does not die of a broken heart, as Geneviève
interprets, which only leaves the possibility of the god’s jealous rage. Thus, blindness is not
only a “crutch” the audience relies upon to understand the baker’s wife’s inner life or an ana-
lytic tool for Geneviève to work through her own given circumstance –her misreading of the
meadowlark’s story is, paradoxically, a kind of “blindness” at the moment when Geneviève is
attempting to rewrite her own tale towards the curative, sighted, ending.
This redoubling, Geneviève’s loss of control of the blindness metaphor, is one example of a
narrative prosthesis’ “disruptive potentiality”: just as the disabled body cannot be standardized,
for no two disability experiences are the same, so too a metaphorical disability cannot be nar-
rowly controlled in the diegetic world. As Garland-Thomson reminds us, disability “demands a
reckoning with the messiness of bodily variety, with literal individuation run amok,” whereby
it “signals that the body cannot be universalized” (24–25). Lyricist Stephen Schwartz’s blind
meadowlark, while an effective storytelling tool, highlights how disability cannot be simply
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inscribed in traditional curative arcs without a disruptive “messiness” that runs alongside, or
counter to, the character onstage’s objectives. In other words, Geneviève is the blind meadow-
lark of the story but not for the reasons she thinks. Her attempts to “cure” herself of her
blindness by running away with Dominique calls attention to her own inability to see the truth
in the story and her own situation. Mitchell and Snyder’s narrative prosthesis “evolves out of this
specific recognition: a narrative issues to resolve or correct –to ‘prostheticize’ in David Wills’s
sense of the term –a deviance marked as improper to a social context” (53). Geneviève’s con-
templation of leaving her husband would certainly be scandalous in the context of her small
French town during the 1930s; her invocation of blindness is a reason and a corrective, though
both fail under scrutiny.
This simple example of how blindness is deployed in one song of The Baker’sWife demonstrates
common issues of cultural representations of disability.The blind meadowlark is coded as passive
and feminine against the masculine, able powers of the king and the sun god. More significant,
the meadowlark is set into the traditional kill-or-cure narrative. This common plot “will often
seem to ‘redeem’ a protagonist –the death will be sacrificial or the cure will be credited to the
hero” (Dolmage 39). While the meadowlark is praised for her virtuosic musical ability –appar-
ently so great that it calls the God of the Sun down to Earth from his celestial flight to restore
her sight –her cure is conditional on accepting the sun god’s invitation, which is a different kind
of prison. Her death, figured as a sacrificial marker of love for the old king, obscures the seeming
expendability of the meadowlark herself.This is but one of many disability metaphors that “run
amok” during a musical number –transmitting images, language, practices, and assumptions
about the disablement that complicate the universalizing generalizations of disability metaphors
in musical lyrics.
Crip characters with diegetic disabilities

Narrative prostheses are fundamentally different than disabilities woven into the musical’s die-
gesis, the plot as represented in the book and score. However ableist they may be, disability
metaphors are effective tools for conveying sentiment precisely because they are commonly
used in everyday speech. In actuality they perpetuate harmful stereotypes that not only co-
opt disablement in service of the able-bodied speaker, but this cooptation also obscures the
condition(s) of the disability itself. Uttered by an able-bodied character performed by an able-
bodied actor, the disabled body never makes an appearance onstage.
What I am calling “diegetic disabilities” are disabilities explicitly scripted into the book of
a musical to be performed onstage. Even if the disability works as a narrative prosthesis (such
as A Christmas Carol’s sickly disabled Tiny Tim), there is still a materially present body. This is a
significant departure in a few key ways. First, it means that a diegetic disability is not a vehicle
glossing an able-bodied character’s experience, as I argue Geneviève’s meadowlark is scripted in
The Baker’s Wife, but a lived condition that a character herself experiences. While the portrayal
may be (and most commonly is) played by an able-bodied actor, diegetic disabilities disallow any
easy negation of disabled embodiment because once a disability is physically enacted onstage it
becomes central to the vocabulary of the musical production. It is not a referent point for what
a character is “actually” feeling because the disability itself is the apparent source of sensation.
Second, diegetic disabilities open space for nonnormative embodiments to be considered as
having equal if not greater value to the conveyance of a story and characters’ experience. Much
like how a book musical integrates music and plot to advance characters –one requires the
other –diegetic disabilities are central to the constellation of an individual character’s expres-
sion, plot arc, and identity. Third, and most significantly, diegetic disabilities in musicals offer
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valuable alternatives to the professionalization of the actors’ body. Given that musical theatre all
but expects extraordinary abilities from its triple-threat actors, the maximally productive body is
thwarted by the disabled body. Encountering disabilities onstage challenge able-bodied notions
of what bodies are livable, marketable, healthy or well, capable, and desirable.
A diegetic disability is preferential precisely because of its discoverability. If a disability is
central to a character’s onstage presence it cannot be covered over, ignored, or translated into
a shorthand for an able-bodied character’s experience. Wicked’s Nessarose navigates the social
experience of being a wheel-chair user during a school dance; hunchedback Archibald Craven
worries his son Colin has inherited his condition in The Secret Garden; Next to Normal’s Diana
Goodman fights for autonomy over her own medical care; Clara is not good at “Statues and
Stories” after her traumatic brain injury, no matter how hard she tries, in The Light in the Piazza.
Regardless of whether the disability is considered incidental or central to the development of
the musical’s plot, the disabled body ruptures expectations of how a body moves through the
world of an American stage musical.What might it mean, then, to cast disabled actors as disabled
characters? Or to reimagine conventionally able-bodied characters as disabled?
Changing casting culture and representation

As in film and on TV, it is common in Broadway musicals for able-bodied actors to play disabled
characters.Various terms for able-bodied actors playing disabled roles circulate among disability
rights activists, performers, and scholars: cripping up, crip-face, disability drag, and cripcature.
These phrases invoke contested histories of “blacking up” and blackface, gender drag, and cari-
cature. When a character is physically disabled it widens the scope of actors perceived as “able”
to perform a role. This, as many disabled actors anecdotally share, does not guarantee a disabled
person will be cast over an able-bodied performer.
While acting is an art form predicated on the portrayal of someone other than oneself we do
not think of Broadway actors Sutton Foster or Joshua Henry as playing “themselves” when they
are playing roles written for white female or black male performers. Yet it seems this rhetoric
of disabled actors “just playing themselves” is common with regards to disability representa-
tion –not least because cripping up has long been a tactic for nondisabled performers to gain
accolades. Just as there’s a particular embodied experience that comes with one’s physical age,
sex, race, and gender identity, that we would assume for able-bodied actors (an actor would gen-
erally not be cast to play an eighty-year-old cisgender, heterosexual black female from Detroit
for a period drama if she does not have some base physical attributes), characters with disabilities
can be portrayed by actors with disabilities with greater nuance and authenticity.
If there were a great number of disabled actors being cast in disabled roles, or disabled
actors being cast in roles traditionally imagined as able-bodied, we could very well be having a
different conversation about casting practices and the merits of calls for “authenticity” in acting.
But that assumes there is already an even playing field in casting practices and representation,
and that is simply not the case. To say “that’s what acting is” allows artistic inequities favoring
able-bodied actors and stereotypes about what disabled bodies do, or what disabilities are, to
continue in film, television, stage, and other performance arts.
Petra Kuppers (2014) suggests able-bodied embodiment renders senses invisible –individuals
tend to only recognize embodiment through rupture (43). Chronic pain, heightened sensi-
tivity or sensory absence, motor or mental modifications due to injury or biological develop-
ment –each ruptures the invisible continuity of the able body and, as Kuppers argues, “shifts
the emphasis away from the body as object to embodiment as a process, a way of doing things”
(44). One potential benefit of triple-threats performing disabilities is that these performances
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pull actors and audiences outside of their typical embodiments to learn new affects, new ways
of being and doing. This is not necessarily Brechtian –with politically alienated actors and
audiences –but the effect is not entirely dissimilar.
“Disability,” Rosemarie Garland-Thomson writes, “is the attribution of corporeal devi-
ance –not so much a property of bodies as a product of cultural rules about what bodies should
be or do” (7). The separation she marks between bodily properties (what bodies are) and social
mores what bodies “should be or do” (how bodies act) is crucial for understanding disability-
in-performance. Musical theatre is a rich site for understanding what we culturally think –or
believe to be true –about what bodies are, based on how we script bodies to be or what to do
onstage. In this way, theatrical staging becomes a framework for articulating disability as “cor-
poreal deviance” from “cultural rules” (Garland-Thomson 6–9). Garland-Thomson’s project is,
in many ways, predicated on Spinoza’s question, “What can a body do?” but it also finds roots
in Deleuze and Guattari’s assertion:
We know nothing about a body until we know what it can do, in other words, what its
affects are, how they can or cannot enter into composition with other affects, with the
affects of another body, either to destroy that body or to be destroyed by it, either to
exchange actions and passions with it or to join with it in composing a more powerful
body. (226)
The generation and exchange of bodily knowledge Deleuze and Guattari describe results in a
new “composition,” a body built upon a doing. In a musical theatre context, this composition
is the cumulative performance and reception of text, score, and physical action, but there is a
danger of conversations circulating between primarily able-bodied theatre-makers and able-
bodied audiences –without the input or intervention of disabled persons with the knowledge
that comes from lived experience. How might a disabled person do musical theatre differently?
How might these changes make the art form more accessible?
Conclusion
Philosophy and theatre scholar Paul Woodruff suggests that “[t]‌heater is the art by which
human beings make or find human action worth watching, in a measured time and place”
(18). Woodruff ’s definition of worth hinges on “capturing people’s attention” and “making
it actually good for them to watch” –value-oriented assessments. What happens when you
place disability at the center of this process? How does disability call, and hold, an audience’s
attention in the theatre? Is it through staring and the apprehension of extraordinary difference?
Or perhaps by creating space for disability, we can find productive points of alienation and
alignment with identities-in-difference? Seeing attitudes towards disability as central to per-
formance in the American stage musical challenges capitalist ideologies of identity production
and offers a framework for investigating these questions. By understanding our cultural invest-
ment in performing illnesses and disability onstage in ways that please presumably nondisabled
audiences, we learn more about the bodily anxieties we hold as individuals and as a society, too.
Note
1 Following Elizabeth Wollman (2017), I use “American stage musical” or the more general term “musical
theatre” when referring to musical theatre as an art form and genre of musicals. “Broadway,” “Broadway
musical,” and its variants are used to specifically refer to a musical’s commercial production.
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Works cited
Barras, Charles M. The Black Crook: An Electronic Edition.Transcribed by Doug Reside. The New York Public
Library, 2 June 2013. www.s3.amazonaws.com/lpa-musical.nypl.org/MusicalMonth/BlackCrook/
BlackCrook.pdf, accessed 10 July 2017.
Brady, Mo, and Nikka Graff Lanzarone. “next to normal.” The Ensemblist. 20 November 2016. www.
theensemblist.com, accessed 23 November 2016.
“Cagney, Film ‘Tough Guy,’ Turns Dancer.” Herald. Syracuse (NY). 15 November 1937, p. 20.
Charlton, James I. Nothing About Us Without Us: Disability Oppression and Empowerment. Berkeley and Los
Angeles: University of California Press, 2000.
Cingari, Jennifer. “ESPN Sports Science Takes Disney’s The Lion King into the Lab.” ESPN. 1 November
2016. www.espnfrontrow.com/2016/11/espn-sport-science-takes-disneys-lion-king-lab/, accessed 15
November 2016.
Deleuze, Gilles, and Felix Guattari. “Becoming- Intense, Becoming- Animal.” In A Thousand
Plateaus: Capitalism and Schizophrenia. Translated by Brian Massumi. Minneapolis: University of
Minnesota Press, 1987.
Dolmage, Jay Timothy. Disability Rhetoric. Syracuse: Syracuse University Press, 2014.
“Football.” The Oklahoma City Times. (Oklahoma City, Okla.), 16 November 1916. Chronicling
America: Historic American Newspapers. Lib. of Congress. www.chroniclingamerica.loc.gov/lccn/
sn86064187/1916-11-16/ed-1/seq-7/, accessed 13 December 2017.
Fox, Ann. “Scene in a New Light: Monstrous Mothers, Disabled Daughters, and the Performance of
Feminism and Disability in The Light in the Piazza (2005) and Next to Normal (2008).” In The Oxford
Handbook of Music and Disability Studies. Edited by Blake Howe, Stephanie Jensen-Moulton, Neil
William Lerner, and Joseph Nathan Straus. New York: Oxford University Press, 2015, pp. 755–794.
Johnston, Kristy. Disability and Modern Drama: Recasting Modernism. New York: Bloomsbury Methuen
Drama, 2016.
Knapp, Raymond. “ ‘Waitin’ for the Light to Shine’: Musicals and Disability.” In The Oxford Handbook of
Music and Disability Studies. Edited by Blake Howe, Stephanie Jensen-Moulton, Neil William Lerner,
and Joseph Nathan Straus. New York: Oxford University Press, 2015, pp. 814–835.
Kuppers, Petra. Disability and Contemporary Performance: Bodies on Edge. New York: Routledge, 2003.
———. Studying Disability Arts and Culture: An Introduction. New York: Palgrave Macmillan, 2014.
———. Theatre & Disability. London: Palgrave, 2017.
Mainwaring, L.M., D. Krasnow, and G. Kerr. “And The Dance Goes On: Psychological Impact Of Injury.”
Journal of Dance Medicine & Science, vol. 5, no. 4, 2001, pp. 105–115.
Mitchell, David T., and Sharon L. Snyder. Narrative Prosthesis: Disability and the Dependencies of Discourse. Ann
Mordden, Ethan. Anything Goes: A History of American Musical Theater. Oxford: Oxford University
Press, 2013.
Moseley, Rachel. “Crazy Sexy Strong.” Cosmopolitan. 13 July 2016. www.cosmopolitan.com/style-beauty/
a58709/cynthia-erivo-crazy-sexy-strong/, accessed 13 July 2016.
Muñoz, José Esteban. Disidentifications: Queers of Color and the Performance of Politics. Minneapolis and
London: University of Minnesota Press, 1999.
Norman, Marsha, and Lucy Simon. The Secret Garden. New York: Samuel French, 1992.
“Playbill for The Black Crook at Niblo’s Garden.” Performing Arts Collection PA-00113. The Black Crook
Collection, 1853–1929. Harry Ransom Center, The University of Texas at Austin, Austin, TX. www.
norman.hrc.utexas.edu/fasearch/findingAid.cfm?eadid=01108, accessed 10 July 2017.
“Rita Hayworth Rises from Bit Parts into a Triple-Threat Song & Dance Star.” Life Magazine, 11 August
1941, p.33.
Ross, George. “In New York.” Times. Chester, PA. 28 February 1938, p. 7.
Russell, Bill, Henry Krieger, and Bill Condon. Side Show. New York: Samuel French, 2014.
Sandahl, Carrie, and Philip Auslander, eds. Bodies in Commotion: Disability and Performance. Ann
Schwartz, Stephen, and Joseph Stein. The Baker’s Wife: Libretto Vocal Book. New York: Music Theatre
International, 1993.
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Sternfeld, Jessica. “‘Pitiful Creature of Darkness’: The Subhuman and the Superhuman in The Phantom of
the Opera.” In The Oxford Handbook of Music and Disability Studies. Edited by Blake Howe, Stephanie
Jensen-Moulton, Neil William Lerner, and Joseph Nathan Straus. New York: Oxford University Press,
2015, pp. 795–813.
Stewart, Zachary.“Broadway Shockers 2016: Cynthia Erivo Runs Half-Marathon Before Performing Color
Purple Twice.” TheatreMania. 25 December 2016. www.theatermania.com/broadway/news/broadway-
shockers-2016-cynthia-erivo-runs-half-mar_79483.html, accessed 17 November 2017.
Wolf, Stacy. Changed for Good: A Feminist History of the Broadway Musical. New York: Oxford University
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Drama, 2017.
Woodruff, Paul. The Necessity of Theatre: The Art of Watching and Being Watched. Oxford: Oxford University
Press, 2008.
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23
OF SCAPEGHOSTS AND MEN
Shane Meadows’ Dead Man’s Shoes and
the politics of learning disability
Anna Harpin
In April 2005, when the Criminal Justice Act (2003) became law, disability hate crime was
finally recognised within the criminal justice system (Quarmby, 8). Though not a separate
offence, it was now possible for the courts to consider whether a murder was aggravated by dis-
ability hatred and to, therefore, increase the sentence. In 2005 Keith Philpott, from Billingham
near Middlesbrough, was tortured and killed by people who claimed to be his friends. In 2006
Barrie-John Horrell from Pontlottyn was brutally killed and his body burned by people who
claimed to be his friends. In the same year, in St Austell, Stephen Hoskin was tortured, drugged,
and made to jump to his own death by a group claiming to be his friends, and Raymond
Atherton was similarly beaten to death by people claiming to be his friends. In Aberdeen in
2007 Laura Milne was murdered and dismembered by her “friends”, and, in Oxford, Sean
Miles was tortured and murdered by his “friends”. In 2008, Brent Martin. In 2009, Michael
Gilbert. In 2010, Gemma Hayter. One could continue year on year with other names including
Michael Kerr, Susan Whiting, Lee Irving, and more. In all of these cases, the victims had learning
impairments and all understood their murderers to be their friends. This phenomenon has,
in part, led to the concept of “mate crime”.1 In all cases the deaths were marked by extreme
cruelty, brutality, prolonged torture, and humiliation. Moreover, in almost all cases the murderers
were young people, operating in mixed-sex groups, and were from deprived socio-economic
backgrounds. In several instances, the victims’ benefits had been routinely taken by their attackers
prior to the murder and some victims had been enslaved to work for their captors (again with
their benefits stolen). As Imogen Tyler notes, not only did recorded incidents of disability hate
crime grow “by 60 per cent between 2009 and 2011”, but also the cuts to benefits and the
introduction of work capability assessments led to a specific rise in crime against perceived
“scroungers” and “fakers” (208–9). However, as the SCOPE report into murders such as these
found: “In almost all cases, the sentences were far lower [than for similarly high-profile and
violent racially motivated murders] and none of the cases was treated as motivated by disability
hatred” (Quarmby, 16–17).
Disability here is, thus, apparently both hyper-visible in the profiles of the cases and yet
legalistically imperceptible. Furthermore, the journalism regarding the cases consistently (and
sympathetically) acknowledges the “vulnerability” of the victims and foregrounds disability as
a defining context against which the murders take place.Yet there appears to be little sustained
interrogation of the interlocking questions that these crimes raise in relation to disability, class,
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economics, and violence.2 Moreover, the language used to describe the perpetrators is laced
with pejorative terminology in relation to their class, intellectual capacity, and mental states. In
this sense, the murders are framed as barbaric, tragic aberrations perpetrated by “feral” youth, by
bad apples.3 The luminous problem, it strikes me, is that the news stories thus become cast in
highly theatrical, familiar, and problematic narratives of good and bad “outsiders”, or, “abjected
bodies”.4 For example, the alleged sadism of the perpetrators relies upon the alleged vulner-
ability of the victims –often described in terms such as “unassuming”,“gentle”,“bespectacled”.5
Likewise, the able-bodiedness and manipulation of the perpetrators in some ways demands the
disability and naivety of the victims for the narrative, or social script, to work. Further, all of the
actors in these dramas mutually rest on submerged dramaturgies of poverty, degeneration, and
heredity as well as pivoting on well-worn tropes that attend on disability: pity and menace. The
issue here is that the socio-cultural conversation is already cast within predetermined narrative
coordinates and political dualisms that paradoxically beget one another. Under such a regime
of thinking, disability is sustained as lack, difference, and weakness; poverty is sustained as gross,
damned, and dangerous. In this sense, both social categories –of class and disability –remain
in “types” and thus remain bonded in their shared social exclusion. Moreover, both are tacitly
understood to be “types” that one would necessarily aim to aspire out of.
The challenge, I propose in this chapter, is to interrogate the performance of social class
within cultural narratives of violence, to examine the politics that structure such violence, and,
most crucially, to consider the conditions that produce disability itself as a category of apparent
ontological difference. Plainly, what social and political conditions make disability legible and
meaningful as disability? And should these be contested? To what extent are social categories
always and necessarily mutually constitutive? That is to ask, how far, for example, does class co-
constitute the meaning of disability and vice versa? And if so, does this render disability, in certain
contexts and in certain manners, politically indistinguishable from class? Through these types of
questions, I hope that this may begin to contribute to a shift in the types of conversations and
narratives we, in the UK and beyond, stage around disability, class, and power. In these pages,
I argue that cinematic culture offers one such aperture through which to re-view the social
conditions of human difference. As Sharon Snyder and David T. Mitchell remind us: “Because
most people have the majority of their interactions with disability through written and visual
materials, the analysis of this domain can provide significant interventions into the public
representation of bodily, sensory, and cognitive difference” (Cultural Locations, 201). The aim of
this chapter, therefore, is to critically examine a British film that renders cinematic the bullying,
torture, and murder of a young man with learning impairments by a group of working-class men
who claimed to be his friends. I do so in order to uncover and interrogate the questions the film
poses about masculinity, class, and disability. Though it is in many ways not a film that is about
disability, nonetheless it is an important piece of cinema for the field insofar as it captures less
what disability is than how, and why, it is made, performed, and destroyed. Indeed, the apparently
incidental nature of learning disability within the film marks its peculiar significance for study.
As Licia Carlson has demonstrated in The Faces of Intellectual Disability (2009), different historical
moments have framed those with impairments in contrary manners with respect to criminality.
While today there is an association between intellectual impairment and vulnerability, in the
early part of the twentieth century the association was more keenly of the impaired figure as
threat or perpetrator. In this sense, there is no stable, static cultural image of disability but rather
shifting, ideologically driven, tales of difference. In this spirit, I will unpack and politically cri-
tique both the availability and the nature of disability as metaphor, device, and visual idiom in
this film. In short, through an exploration of class, gender and sexuality, and form, I will argue
that Dead Man’s Shoes (2004) interrogates learning disability as the master signifier of neoliberal
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“waste populations”. As numerous analyses of neoliberal capitalism have shown, its claims to
freedom mask a commitment to governmental interventions that convert social relations into
forms of competition between individuals.6 This raises acute questions with respect to the value
and capacity of the disabled body. If one’s capacity to compete is determined by one’s capacity
to realise one’s potential value as a unit of human capital, then both disabled and working-class
bodies are inevitably positioned in a space of precarity, a position whose evident social con-
struction is naturalised by the discursive formation of neoliberalism. Moreover, under austerity,
the need to prove oneself really disabled in order to be a legitimate non-producer, and therefore
to receive benefits, unavoidably defines disability as a social and economic burden, as a def-
icit. Indeed, if personhood is primarily construed as a function of economic productivity, then
a disabled person becomes, in effect, a contradiction in terms. In this sense, there can be no
such thing as a disabled person. Under such a logic, one is either really disabled and thus a social
burden (and denied access to neoliberal personhood) or else a malingerer (with its class-marked
connotations). In practice, this binary distinction presents no dilemma: both positions define
a failed subject, a waste product. Dead Man’s Shoes, I contend, exposes the constructedness and
mutuality of class and disability as a means to critique the violent politics of neoliberalism for
socially marginalised bodies.
Definitive variance
Rosemarie Garland-Thomson proposes that: “Disability has four aspects: first, it is a system for
interpreting bodily variations; second, it is a relation between bodies and their environments;
third, it is a set of practices that produce the able-bodied and the disabled; fourth, it is a way of
describing the inherent instability of the embodied self ” (74).While Matt Hargrave, in his study
of learning disability and theatre, charts the disability rights movement as “an emancipatory pro-
cess seeking to uncover and dismantle the mechanisms by which all industrial societies operate
an ‘ableist’ ideology: that is, the structures of thought and social organisation that validate able-
bodiedness and high cognitive functioning as the validating ideal of humanity” (21). In both
of these arguments disability is understood as both human variance and as a social practice of
reading such variance. Disability is simultaneously both concept and lived encounter. In this
sense, both authors appear to subscribe to a model of thinking which understands disability and
impairment as encultured, felt, relational, biological, and social. Such an understanding speaks
broadly to both the cultural and the interactional models of disability as proposed by figures
such as Tom Shakespeare, instead of to the more rigid social and medical models which shaped
early disability debates and discourses. It is not the remit of this chapter to rehearse the histories
of such discussions here.7 It remains, however, important to position the language and models
that undergird the following analysis.
Joanna Bourke’s cultural history of pain suggests that pain is a relational, encultured
encounter: “Although pain is generally regarded as a subjective phenomenon –it possesses
a ‘mine-ness’ [after Paul Ricouer] –‘naming’ occurs in public realms” (6). She continues by
observing that pain is a cultural inheritance: “people learnt that this is being-in-pain while that
is something else –an itch, a feeling of heaviness, vertigo, or jouissance, for instance. Equally,
pain becomes recognised by other people through the same interactive process” (26). Bourke
thus frames pain as a reiterative performance insofar as it unconsciously reproduces learned
knowledges, roles, and practices. If pain is a public practice, an “event” as opposed to an object or
thing, then can we understand disability as a related process or experience? Disability is shaped
by manifest phenomena (restricted movement, aptitudes for logic, variance in visual fields of
perception, exhaustion, and so on). It is also shaped by cultural norms, attitudes, and limitations
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that produce exclusion. There is also a biological component to all human variance insofar as
having a body is a rare universal. To imply there is a performative quality to disability is cer-
tainly not to participate in allegations of malingering or even to suggest that such performances
are deliberate, conscious actions. Rather, I contend that a performative, relational model that
understands both disability and impairment as biopsychosocial affords vital room for excavating
the stories, rituals, naming processes, environments, relationships, narratives, institutions, and so
forth that produce both disability and its opposite, so-called ability. While I share Hargrave’s
desire to leave behind the “empty universal of ability” because “there is no ‘disability’, only
different capabilities contained in a plethora of human potential”, in this chapter I will pur-
posefully employ the language of difference (as witnessed in “disability” and “impairment”) as a
means of interrogating and ultimately abandoning such language in favour of notions of human
variance (233). Indeed, by attempting to expose how disability is culturally produced in this
film, I aim to move away from the fixity of identity (I am) and towards a more radical model
of capabilities (I experience). In this regard, I am less preoccupied with what disability is (or is
not) than how it is produced, distributed, experienced, and sustained. Moreover, in moving from
“I am” to “I experience”, I am pursuing a model of thinking that rejects a sense that disability
is simply a static thing that an individual has; instead I am embracing a more relational, felt, and
dynamic understanding of human variance. This also marks a desire to reject a deficit model of
disability in favour of a model that attends to the generative political capacity of variance.
Get in the back of the van

Standard accounts of Shane Meadows’ cinematic oeuvre emphasise his working-class roots,
low-budgets, DIY production methods, semi-improvised approach to scripting and shooting,
use of non-professional actors, and a thematic preoccupation with working-class masculinity.
A particular consequence of this framing of his work is to underscore the authenticity of his
voice as an insider to the lives and hardships he depicts. Indeed, many interviews, DVD extras,
and academic articles observe the autobiographical origins of his films, particularly with respect
to violent male cultures.8 Dead Man’s Shoes, in this sense, bears all the hallmarks of a Meadows
production. It is a low-budget revenge thriller that is set on a deprived estate and follows a group
of young, disenfranchised men. However, alongside the more familiar terrain of dispossessed
working-class political life is sutured a storyline of disability, torture, and murder. This was
not the first time Meadows had depicted disabled characters. A Room for Romeo Brass (1999)
explored the interactions between two boys (one of whom had a physical impairment) and an
older man (who is framed as being mentally “borderline handicapped”) (Bradshaw).9 However,
this later film offers a more sophisticated and sustained exploration of the interrelationships
between class, masculinity, and human capacity.
Getting wasted
In brief, the film charts the revenge tragedy narrative of Richard (Paddy Considine) as he seeks
to avenge the death of his brother Anthony (Toby Kebbell) who has been bullied, tortured,
and murdered by a gang of local men, headed up by Sonny (Gary Stretch).10 The film’s coup is
to reveal Anthony (who appears as a full character for most of the film) as in fact a ghost. On
the one hand it may strike some readers as immediately problematic. It appears to follow the
Rain Man model of allowing “normates” to learn valuable lessons through an encounter with
disability.11 It retroactively frames the disabled character as supernatural. It reaffirms the ties
between tragedy and disability that scholars have long sought to disentangle. And it essentialises
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disability insofar as Anthony’s learning impairments are the most important thing about his
character. Moreover, even in the film’s promotional materials Dead Man’s Shoes participates in
problematic narratives about disability. For example, Meadows praises for Kebbell for “doing”
disability well: “The part is a lad called Anthony who has mental disabilities, so it’s a difficult role
to play, even with a lot of research time. But Toby came in really late…He ended up doing it
brilliantly. He’s more than ably filled the shoes” (“Shane Meadows and Associates”, 910, emphasis
mine).This not only implies that disability is a thing to be “known” and “got right” via research,
but also emphasises Kebbell’s extra ability: he’s so good he can even do disabled, quickly. As Petra
Kuppers argues in relation to Rain Man (1988): “In his role, the non-disabled Hoffman is still
visible –his presence is the palimpsest that allows the audience to engage in the movements
of make-believe. The ‘presence’ of autism is held at arm’s distance. To ‘be’ autistic would mean
not to be able to be ‘a performer’ ” (Kuppers, 54). Sounding a related note, founder of Graeae
Theatre Company Richard Tomlinson notes, “The irony is when they [disabled people] are on
stage, the audience often refuses to accept that a blind actress is in fact blind, or a deaf actress
deaf ” (14). In these manners, one may wish to critique the film for reinscribing ableist fanta-
sies of difference. On the other hand, I would like to argue that in figuring Anthony as a tragic
scapeghost, the film is able to explore the ways in which working-class masculinity and dis-
ability are mutually produced as “waste populations” under a neoliberal regime. This is not to
create an equivalence between the two; rather it is to expose the capitalist structures that create
the conditions in which both become legible as waste.
Taking the blame
In his essay about tragedy and ethics in British social realist cinema, Paul Dave describes
Anthony as a political scapegoat that operates as an indictment of the society that has for-
saken him: “As scapegoat, Anthony’s existence challenges the neoliberal attack on the social
and the working class. That is to say, by embracing Anthony –as the abject, the ‘weak’ –those
around him would be capable of rediscovering the ‘equality of being’ that can remake social
solidarity” (39). Drawing on Terry Eagleton and Paul Ricouer, Dave here rightly presses upon
us the use of Antony as metaphor for the denigration of working-class men under neoliberal
capitalism. Moreover, he goes on to argue that the abuse of Anthony is far from an aberration
but rather the logical product of neoliberalism, describing bullying as “something structurally
integral to neoliberalism” (40). I am interested, however, in the ghostliness of this scapegoat. In
paying attention to the spectral qualities of Anthony’s role, one is able to see that the film not
only exposes the decimation of working-class subjectivity but also how Meadows’ complicates
Anthony as merely a cipher of “vulnerability”. Indeed, in certain ways Anthony is Richard, or,
is at least his phantom double. Richard is the only one who can see Anthony. Both are socially
cast as “weirdos”. Richard forms a ghostly presence in Anthony’s funeral sequence. Richard has
a spectral quality insofar as his stealth makes him appear as if he can almost walk through walls
as he haunts and stalks the gang. He impersonates Anthony and seeks narrative conclusion in
pleading to be killed in the same ruins of Riber Castle where his brother died. Further, the
double itself as a structure acts as a performative mechanism to see things differently by virtue
of a two-fold awareness. Critics such as Paul Elliott, Martin Fradley, Sarah Godfrey, and Melanie
Williams evoke notions such as the return of the repressed and the uncanny to describe the tone
of the film.12 In addition to the long tracking shots of the two brothers walking across landscape
behind one another, visually the pair are frequently framed as one another’s echo, mirror, or
shadow (Figures 23.1 and 23.2):
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Figures 23.1 and 23.2 “Brotherly Doubles” in Dead Man’s Shoes, dir. Shane Meadows, Warp Films (2004).
This doubling, I propose, is significant for the politics of disability for two primary reasons.
Firstly, and perhaps more straightforwardly, the blurred distinction between the two men disrupts
the certainty of their presumed ontological difference as “normal” and “disabled”. Through
this doubling Meadows’ agitates the idea of disability as a category of ontological difference.
Secondly, it is tempting to scale this argument, to read the film as populated by ghostly men
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living in an abandoned town. As Clair Schwarz writes: “much of the film’s sparsely populated
mise-en-scène resembles the post-social desolation and economic impoverishment of the Western
‘ghost town’ ” (105). Furthermore, the gang are called “goonies”. Richard, when wearing the gas
mask, is described as the “elephant” (man), and Richard is himself a war veteran and thus carries
within his image long-standing histories of “broken” and “damaged” men. Moreover, there are
multiple intimations throughout the film that cast, albeit via pejorative means, all the characters
as “idiots”. Indeed, the gang are framed in many ways as adolescent. Here unemployed bodies,
like learning impaired bodies are, in certain ways, cast as forever children. On the one hand, this
is problematic insofar as it describes the brutalised nature of working-class culture precisely via
the metaphor of disability. The gang are, in this sense, disabled by neoliberal society wherein
they have no value as economic producers. It is notable that the only one who has left the gang
is the only one to have attained key normative markers of success (home-owner, job, wife, kids,
car). He is, thus, not deficit but a producer of social and economic capital. On the other hand,
to draw a keen distinction between Anthony and “the rest” is to reassert a dualism of ability and
disability that the film unsettles. Anthony is both disabled and working class. Moreover, under
a neoliberal regime these abject identities share coordinates of exclusion that are valuable to
acknowledge. Discussing Zygmunt Bauman’s Modernity and the Holocaust (1989), Snyder and
Mitchell remind us that, for Bauman, to apprehend the holocaust as extraordinary is to “fail to
recognise the Holocaust as a by-product of modern utopian fantasies” and thus to “avoid the
task of making urgent critiques of our own fetishization of normativity” (Cultural Locations, 32).
If we only critique the use of disability as metaphor in this film, we fail to apprehend how far
it exposes the interlocking fetishization of normative coordinates that are at play under neo-
liberal capitalism; coordinates that produce political scapeghosts like Anthony, like Richard,
like Sonny et al. Adrian Poole writes that “tragedy stages moments of crisis in a community’s
understanding of itself, moments when it risks being torn apart by conflicting beliefs about
the gods, political authority, relations between the generations and the sexes, between natives
and immigrants” (41). Perhaps a valid continuation of this list could be the “normal” and the
“deviant” and thus the film can be said to be staging a crisis of categorisation. If so, Dead Man’s
Shoes, through its exploration of the sticky proximity of so-called ability and so-called disability,
can be understood to both expose and resist neoliberal fantasies of ontological difference.While,
of course, neoliberalism did not “invent” ontological difference it has nonetheless mobilised it
to economic ends. In this manner, neoliberal thinking requires disability as a means to shore up
its counter image –economically productive normativity. Dead Man’s Shoes explodes the myth
of such difference by casting light on the constructed nature of interlocking social categories
of difference.
Being a man
The figure of the scapegoat is further multiplied throughout the film. Anthony is, of course,
the master scapegoat. The gang’s bullying and suiciding of Anthony mark the film’s clearest
examples of how one man is exposed as lack in order to attempt to sustain the secure, valuable,
social identities of other men. The erasure of Anthony thus pursues the inclusion of the gang
into social economies of masculine worth. Indeed, it is notable that Anthony is raped in the
film by proxy.The character of Patti is coerced into having sex with Anthony following Sonny’s
threat to make Anthony give him a blow job. In this sense, Patti acts as a surrogate for Sonny’s
sexual violence against Anthony. After the sex with Patti, Anthony is congratulated by the men
as if he has been interpellated into a sexual economy of worth. Anthony is thus made a man
by being proxy-raped by Sonny. The gang’s masculinity is, in this way, doubly shored up. First,
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by enacting sexual violence but via a female body (ensuring heteronormativity is persevered).
Second, the gang confirm their masculine sexuality by enforcing Anthony (as the scapegoated
figure of their own abject “weakness”) to perform in this economy. Indeed, sexual power (or
lack thereof) is repeatedly foregrounded in the film. For example, an audience’s first introduc-
tion to several of the gang is watching them read aloud from porn magazines or hearing them
boast about their plans to shag women. Likewise, three of the gang are turned into female
clowns during a stealth attack by Richard (Figure 23.3):
Figure 23.3 “Sonny” in Dead Man’s Shoes, dir. Shane Meadows, Warp Films (2004).
One may wish to question this logic. It appears as if the film is using Anthony as feminised
scapegoat via his learning impairments to make a point about working-class masculinity. He is
available as metaphor or symbol in this way because he is disabled. However, if we again con-
sider scapegoating and more specifically scapeghosting an alternative perspective is possible.
Within the internal logic of the film-world it is without question that Anthony is exposed as
the gang’s projected shame regarding their own weakness. He is bullied because of his learning
impairments. In short, they attack him for representing their own perceived lack as “men”.
However, just as we previously noted the sticky proximity of ability and disability, here again we
can see –via images of “weakness” in the film –the shared manners in which forms of social
exclusion are produced under neoliberal capitalism. The gang are themselves scapegoated by
Richard –a squaddie (read: hyper masculine). Richard picks them off one by one and stages
each of their deaths for the rest of the group. The murders are thus highly theatrical. The men
are made examples of (Figures 23.4 and 23.5).
Not only are they visibly made scapegoats in this way, the inevitability of the revenge tragedy
form means that these characters are always already dead men walking. They are ghosts. In this
sense, the images of their bodies as ghostly exemplars, as scapeghosts, renders luminous the social
and moral logic behind their executions. As Beth Johnson and Joe Andrew argue, this is, in part,
in dialogue with Anthony’s torture:
Each of the five men is treated in a way that mirrors what they had done to Anthony.
Thus Gypsy John is executed at his most vulnerable moment (on the toilet) in the near
presence of people that could, perhaps, have saved him. Soz [sic], like Anthony, is forced
into an unfamiliar and cramped space…As the gang had forced Anthony to perform for
them, so Richard forces Soz and Herbie to dance for him. Then, in an almost perfect
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replay of the scene in which Sonny had tried to force Anthony to fellate him, Richard
drags the semi-naked and utterly helpless Sonny out to the very same kitchen, there to
execute him. (872)
Yet there is more to say here. The men who are made scapeghosts by Richard are framed in his
revenge logic as feminised, vulnerable, helpless, made to dance, act and look like fools, exposed
in their embodied states, weak. They are, in this sense, cast in some of the social vocabularies of
Figure 23.4 “Gypsy John” dead on the toilet in Dead Man’s Shoes, dir. Shane Meadows, Warp Films
(2004).
Figure 23.5 Murdered “Tuff ” stuffed in a suitcase in Dead Man’s Shoes, dir. Shane Meadows, Warp Films
(2004).
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disability and learning impairment.This logic makes legible the apparent contradiction between
masculinity and disability. As Tom Shakespeare writes, “The traditional account, such as it is, of
disabled masculinity, rests…on the notion of contradiction: femininity and disability reinforced
each other, masculinity and disability conflict with each other” (57). Dead Man’s Shoes appears
to confirm this conflict by framing the gang in disablist thinking. However, is it once more
possible here to argue for the mutuality of abjected identities by understanding all these men
as always already socially dead, as the living ghosts of neoliberal capital. Jobless, childless, and
unmarried these men repeatedly fail to perform heteronormative masculinity. Furthermore, in
their attempts to interpellate Anthony in such economies of value –they make him shop for
them, they make him their child, they rape him –they underscore the very inaccessibility of
such realms for men like them. Anthony is likewise framed, owing to his disability, as deficit, as
non-productive body under the terms of capitalism. Under such a regime both class and dis-
ability are things to aspire out of. Robert McRuer’s notion of “compulsory able-bodiedness”
underscores this by exposing how far such thinking argues that able bodies and minds are what
we are all “aiming for” (372, emphasis mine). Bodies and minds are thus things to be monitored
and managed via neoliberal technologies of self-governance in order to perform legitimate citi-
zenship. As Snyder and Mitchell suggest:
Neoliberal bodies, in this sense, provide opportunities for treating the individual
topos of biology as, in-and-of-itself, a site of perpetual improvement for market-based
exploitations, and informational/ affective resource extraction…those who don’t
adequately maintain their bodies are held personally responsible for their descent into
the chaos of ill health and nonwell being.
(Biopolitics, 12 and 102)
As I have written elsewhere, such health hygiene relies on reiterative performances of shared
taxonomies of normal that are simply unavailable to certain “types” of bodies and experiences.13
Here such things as fatness or hallucinations attain a moral force quite unbelonging to them.
In a similar way poor and disabled are things to be, at best, overcome, and, at worst, managed.
Neither working-class bodies nor disabled bodies have any such opportunities in Dead Man’s
Shoes. Both abject categories, then, are the living scapeghosts of capitalism. In exposing the
illegitimacy of both of these categories of identity and experience, Meadows, I propose, invites
an audience to confront the violent, exclusory model of neoliberal personhood.
Heroes and monsters

Two scapeghosts remain. Richard and Mark (Paul Hurstfield). In the concluding scenes –of
Day 5 –Richard hunts down the missing gang member, Mark, and seeks this tragedy’s denoue-
ment. Mark’s crime was being a bystander: “I didn’t stop it” (Meadows, 01:19:20). His pun-
ishment is thus that he must stop the revenge cycle. Richard implores: “you were supposed
to be a monster, now I’m the fuckin’ beast, there’s blood on my hands, look what you made
me do. Come on, stick that knife in me. I don’t know what else I’m capable of doing…I just
wanna lie with my brother” (Meadows, 01:21:56). Like Othello’s Emilia who requests “Ay, ay.
O, lay me by my mistress’ side!” Richard’s final request enacts a dual moment of recognition
of betrayal and its belated atonement (Shakespeare, V.2.244, 2169): “he fuckin’ was a spastic…
he was a fuckin’ naanaa…he was an embarrassment to me…I love you Anthony but I can’t do
it” (Meadows, 01:18:35). Here Richard scapegoats himself as not the avenging antihero of the
film but instead another ghostly culprit in the suiciding of Anthony, another man suspended in
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perpetual abjection. Mark, on the other, is the full stop in this revenge tragedy plot. He is the
gang member who got away and now is spared. He is cast in a narrative of “overcoming” insofar
as he is framed, in stark contrast to the single, unemployed, childless men of the remaining gang,
as a working, married, father (notably of two boys). He is thus a producing figure of neoliberal
norms and ideals. However, he too is ghosted by his encounter with death. Indeed, as the film
concludes Mark is sent out of the ruins of Riber Castle with both literal and symbolic blood
on his hands. The final scapegoat is thus saved and cast out of the community of men in order
to resolve the problems he has witnessed therein. The blood, however, reminds an audience
that far from being its solution, Mark is stained with the very sins that produced the catas-
trophe: masculine normativity. There is no comfort in the conclusion. Rather the film ends
with aerial shots over Riber Castle, and the estates and farms of Uttoxeter. Such shots serve to
underscore the unremarkability of this tragedy. If, as Poole has suggested, tragedy argues that
“this life is exceptional”, Meadows inverts this to precisely suggest that instead, the tragedy lies
in the unremarkability of Anthony’s death (1).
So far I have argued that through his exploration of the mutuality of forms of systemic
exclusion Shane Meadows offers a critique of some of the interlocking systems of normativity
that are at play under neoliberal capitalism. I have also proposed that the figure of the scapeghost
allows us to consider the conditions that produce social abjection through creating a social class
of living ghosts. Much of the discussion has focussed on individual characters but attempted to
point to the political sameness (from the purview of neoliberalism) that conditions aspects of
marginalised selfhoods. This is not in a bid to create an equivalency or to imply there are no
particularities to either class or disability as either categories of identity or as the lived realities of
experience. It is simply to draw attention to the way that they are in social, cultural, and political
dialogue with one another in important ways. To return to Bourke, it is to consider how these
encultured narratives intertwine and interact. I do so in the hope that through an intersectional
model of thinking one might ultimately help to expose neoliberalism as the catastrophe of our
times that flattens human variance into categories of productivity and deficit. However, there
is one final point to make prior to conclusion which centres around questions of collectivity,
community, and trauma.
In Toni Morrison’s Beloved (1987) she develops the concept of “rememory”. This notion
captures a great deal in the novel about the unstable traffic between remembering and forgetting,
but perhaps most usefully for our purposes highlights the porous nature of traumatic memory –
memory which might be considered to have breached its supposedly sovereign boundaries.
Morrison draws our attention to how far memory remains, haunting landscapes: “you be walking
down the road and you hear something…And you think it’s you thinking it up. A thought pic-
ture. But no. It’s when you bump into a rememory that belongs to somebody else” (Beloved,
34). Meadows offers a cinematic version of this concept in Dead Man’s Shoes. The film includes
multiple black-and-white sequences of the bullying, torture, and murder of Anthony. However,
rather than emerging from point-of-view shots as one might expect of cinematic flashbacks,
these scenes are always dispersed between the men. Indeed, there are multiple sequences when
it is clear that all of the men are remembering the same moment. Perhaps most significantly,
Richard appears to also share these memories even though he was never present and thus can
possess the memories in an ordinary sense. In this way, Meadows offers a sense of traumatic
memory that haunts the landscape, that doesn’t properly belong to anyone. Memory stalks the
estate in much the way Richard does. This, I propose, further underscores the unremarkability
of the tragedy insofar as it is rendered almost the very atmosphere of the town. This is fur-
ther amplified by the dislocation of cause and effect within the film with respect to violence.
For example, as noted, Anthony is raped by the group but there is a gap, or surrogate for the
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violence, in the form of Patti. Anthony is murdered by the group but there is again a gap in the
perpetration insofar as technically he ends his own life. Likewise, Richard turns his suicide to
murder. This fracturing of trauma and cause amplifies the sense of violence as not being simply
actions done by people to others but also as being the very structures and atmospheres for living
in. It is my contention that in so doing, Meadows ask us to focus not only on the tragedy of
an individual story (in this case Anthony) but simultaneously on the catastrophe of collective
abjection.
Ruined ghosts
Hargrave has argued that inclusion does not solve the problems of power. He writes that
arguments for diversity necessarily accept the idea “that there is a non-diverse centre from
which to deviate”, and thereby reasons that “Diversity is uniformity’s best-kept secret” (233).
Sounding a related note, Snyder and Mitchell have proposed that arguing for “positive” content
in relation to disability representation is to “merely replace one form of historical simplifica-
tion with another” and thus the objective is rather to “destabilize ways of knowing disability”
(Cultural Locations, 4). I have not sought, therefore, to argue that Meadows offers a “positive”
view of disability or that his representational practice is in any way exemplary. Indeed, it is far
from achieving the goal that Phoebe Hart suggests regarding the urgency of prioritising films
by disabled filmmakers so that they can “revise and control the production of history” (87). It
is perhaps most accurate to think of Dead Man’s Shoes as, at least in part, a product of ableist
fantasies of disability. As Morrison has argued, the subject of the dream is always the dreamer.14
And, as Jeffrey Preston has noted: “media representations of disability are not about the disabled
but about the nondisabled encountering their own fear of disablement” (19). Nevertheless,
if the goal is, as Snyder and Mitchell argue, to destabilise ways of knowing then examining a
film like this has three-fold worth. Firstly, it makes legible an ableist gaze through the quality
of metaphor that is useful to critique for what it reveals without aiming to reveal. Secondly, it
destabilises the certainty of ontological difference through an intersectional understanding of
class and disability. In so doing it foregrounds how both categories are made, sustained, and
narrativised. In particular the film’s attention to labour, productivity, and systemic exclusion
highlight the economics of normativity in significant ways. Thirdly, while it does not represent
the appalling cases with which this chapter began, Dead Man’s Shoes nevertheless offers a searing
critique of the invisibility, the ghostliness, of certain “kinds” of people. While some of the cases
were briefly high-profile, disability hate crime remains largely overlooked as a systemic and
pervasive problem. A fourth contribution to impairment discourse that this film makes is to
complicate cultural narratives of disability by pushing beyond tales of impoverished monsters
and vulnerable victims. Instead, in offering us the multiple and multiplying ruined scapeghosts
of capitalism, Meadows invites audiences to question the worth and capacity of neoliberalism
as a set of world-making practices.
Notes
1 “Mate crime” is British slang for crimes perpetrated by individuals or groups who pose as friends or
allies to particularly vulnerable people in order to exploit them (financially, sexually, and so forth).
2 Katherine Quarmby’s journalism in The Guardian, UK, is a notable exception to this generalisation.
3 The Wigan Post, for example, describes Atherton’s killers as “feral, wild, and untamed” (4 April 2007).
Likewise, QC John Charles Rees, in polite class-marked code, describes Horrell’s killers as “not the
brightest and not the most mature…chronic alcoholics”, South Wales Argus, 4 May 2007.
4 I am drawing here on Tyler’s notion of social abjection in Revolting Subjects.
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5 See, for example, BBC News coverage on 4 May 2007, http://news.bbc.co.uk/1/hi/wales/south_east/

6624515.stm. Last accessed 2 May 2019.
6 See, for example, Jeremy Gilbert, “What Kind of Thing is ‘Neoliberalism’?” in Jeremy Gilbert, Neoliberal
Culture (Chadwell Heath: Lawrence and Wishart, 2016), pp. 10–32, and Wendy Brown, Undoing the
Demos: Neoliberalism’s Stealth Revolution (Cambridge, MA: MIT Press, 2015).
7 See, for example, Christopher A. Riddle, “The Ontology of Impairment: Rethinking How We
Define Disability” in Matthew Wappelt and Katrina Arndt (eds), Emerging Perspectives on Disability
Studies (London: Palgrave, 2013), pp. 23– 39, and Tom Shakespeare, Disability Rights and Wrongs
(Abingdon: Routledge, 2006).
8 See, for example, Paul Elliott, “ ‘Now I’m the Monster’: Remembering, Repeating and Working
Through in Dead Man’s Shoes and TwentyFourSeven” in Martin Fradley, Sarah Godfrey, and Melanie
Williams (eds), Shane Meadows: Critical Essays (Edinburgh: Edinburgh University Press, 2013), pp. 83–
94, as well as the introduction to this collection for two examples of this tendency.
9 This phrase is used by Peter Bradshaw in his review of the film, which criticises the stereotyped por-
trayal of the character Morell (Paddy Considine).
10 There is a woman in the group, Patti (Emily Aston), but she is a marginalised figure and not central to
the narrative.
11 I am borrowing the term “normates” here from Rosemarie Garland- Thomson from her book
Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature (New York: Columbia
University, 1996).
12 See for example, Paul Elliot, p. 87, and Fradley, Godfrey, and Williams, p. 9.
13 See, for example, chapters 5 and 6 of my monograph Madness, Art, and Society: Beyond Illness
(London: Routledge, 2018) for a discussion of body weight and mood respectively in terms of health
hygiene.
14 See, Toni Morrison, Playing in the Dark: Whiteness and the Literary Imagination (London: Picador, 1992).
Works cited
Bourke, Joanna. The Story of Pain: From Prayer to Painkillers. Oxford: Oxford University Press, 2014.
Bradshaw, Peter. The Guardian, 4 February 2000.
Carlson, Licia. The Faces of Intellectual Disability: Philosophical Reflections. Bloomington: Indiana University
Press, 2009.
Dave, Paul. “Tragedy, Ethics, and History in Contemporary British Social Realist Film” in David Tucker
(ed.), British Social Realism in the Arts Since 1940. London: Palgrave, 2011, pp. 17–56.
Garland- Thomson, Rosemarie. “The Politics of Staring: Visual Rhetorics of Disability in Popular
Photography” in Sharon Snyder and David T. Mitchell (eds), Disability Studies: Enabling the Humanities.
New York: The Modern Language Association of America, 2002, pp. 56–85.
Hargrave, Matt. Theatres of Learning Disability: Good, Bad, or, Plain Ugly? London: Palgrave, 2015.
Hart, Phoebe. “Aberrancy and Autobiographical Documentary” in Catalin Brylla and Helen Hughes (eds),
Documentary and Disability. London: Palgrave, 2017, pp. 79–93.
Johnson, Beth, and Joe Andrew, “Dead Man’s Shoes: Revealing the Subtext of the Lost Maternal”. Journal of
British Cinema and Television, 10:4, 2013, pp. 863–77.
Kuppers, Petra. Disability and Contemporary Performance: Bodies on the Edge. Abingdon: Routledge, 2003.
McRuer, Robert. Crip Theory: Cultural Signs of Queerness and Disability. New York: New York University
Press, 2006.
Meadows, Shane. Dead Man’s Shoes. Warp Films, 2004.
———. in Jared Wilson. “Shane Meadows and Associates: Selected LeftLion Interviews”. Journal of British
Cinema and Television, 10:4, 2013, pp. 909–24.
Morrison, Toni. Playing in the Dark: Whiteness and the Literary Imagination. London: Picador, 1992.
———. Beloved. New York: Vintage, 2004.
Poole, Adrian. Tragedy: A Very Short Introduction. Oxford: Oxford University Press, 2005.
Preston, Jeffrey. The Fantasy of Disability: Images of Loss in Popular Culture. Abingdon: Routledge, 2017.
Quarmby, Katherine. Getting Away with Murder: Disabled People’s Experiences of Hate Crime in the UK.
London: SCOPE, 2008.
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Schwarz, Clair.“‘An Object of Indecipherable Bastardry –A True Monster’: Homosociality, Homoeroticism,

and Generic Hybridity in Dead Man’s Shoes’ in Martin Fradley, Sarah Godfrey, and Melanie Williams
(eds), Shane Meadows: Critical Essays. Edinburgh: Edinburgh University Press, 2013, pp. 95–110.
Shakespeare, Tom. “The Sexual Politics of Disabled Masculinity”. Sexuality and Disability, 17:1, January
1999, pp. 53–64.
Shakespeare, William. “The Tragedy of Othello the Moor of Venice” in Stephen Greenblatt et al. (eds), The
Norton Shakespeare. London: W.W. Norton & Company, 1997.
Snyder, Sharon, and David T. Mitchell. Cultural Locations of Disability. Chicago: University of Chicago, 2014.
———. The Biopolitics of Disability: Neoliberalism, Ablenationalism, and Peripheral Embodiment. Ann
Tomlinson, Richard. Disability,Theatre, and Education. London: Souvenir Press, 1982.
Tyler, Imogen. Revolting Subjects: Social Abjection in Neoliberal Britain. London: Zed Books, 2013.
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24
DISABILITY, DRAMA,
AND THE PROBLEM
OF INTERSECTIONAL
INVISIBILITY
Ann M. Fox
Disability occupies drama, time and again. From Oedipus Rex (fifth century BCE) to Endgame
(1957), from Richard III (1592–3) to Fences (1985), from The Glass Menagerie (1944) to Cost of
Living (2016), the Western stage has been populated with characters who limp and stim, who
have divergent bodies and atypical minds. Yet literary disability studies still does not turn its
attention to this genre with as much frequency as it should. There are some good reasons for
this: the emphasis on disability art and performance; the vibrancy within the humanities of
cultural and performance studies; the increasing economic inaccessibility of mainstream theater
to many audience members; and most significantly of all, the erasure of disabled people from
the stage, both figuratively (when they are used as metaphor) and literally (when nondisabled
actors play disabled characters by “cripping up”). Why, after all, give a genre credence that has
given crips grief?
But in contemporary American drama, there have been important recent shifts around dis-
ability and drama. For example, Deaf West’s production of the 2006 musical Spring Awakening
played in 2015–16 to great acclaim, also casting the first actor to use a wheelchair on Broadway
(Ali Stroker, who would also go on to be the first wheelchair user to win a Tony in 2019
for Oklahoma!). In his 2017 revival of The Glass Menagerie, director Sam Gold cast an actor
(Madison Ferris) who used a wheelchair to play Laura Wingfield, and made use of blocking
that placed the disabled body front and center in new and exciting ways. These successes
affirm that disability has always been a complex part of drama, a force I elsewhere have
termed the “fabulous invalid” (I appropriated this phrase from George S. Kaufman and Moss
Hart’s 1938 play of the same name, which refers to an almost-but-never-quite-dead theater):
The fabulous has complex, sometimes divergent meanings; it can be the extraor-
dinary or prodigious, or it can be that which strains credulity. It is my contention that
individual disability embodiment, the social construction of the body, and the body
politic’s definitions of disability are made all made fabulous through the presence of
disability in mainstream theater; in recognizing that fabulosity, we can move to dis-
cern a disability inheritance in drama that can be productively embraced rather than
prematurely avoided.
(Fox 125)
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The problem of intersectional invisibility
This pervasive presence redeploys disability as political, confrontational, and creative. Given that,
there remains much to be done in reinterpreting canonical drama, since plays reveal themselves
anew once we read for and through their disability presence. This is even more urgent in light
of the otherwise very good news that plays attending to a broad range of identities –exploring
race, gender, sexuality, and class onstage –are increasingly visible in the United States and
United Kingdom. Yet disability is still dangerously deployed in plays that prominently figure
it as part of their social justice endeavor. It is no longer enough simply to invite a rereading
of disability in dramatic literature, then: in this essay, I want to issue an invitation to students,
playwrights, and critics about the vital importance of considering carefully the use of disability
onstage and beyond in simply embodying intersectional identities.
Better understanding disability as part of intersectionality is more than simply checking
another box as we survey the makeup of fictional landscapes. It challenges the white cisgender
heteronormativity of disability as popularly conceptualized: “[t]‌he layers are so tangled: gender
folds into disability, disability wraps around class, class strains against race, race snarls into sexuality,
sexuality hangs onto gender, all of it finally piling into our bodies” (Clare,“Digging”). Dan Goodley
builds on this idea of entanglement and asserts that, therefore, critical disability studies must be
a platform or plateau through which to think through, act, resist, relate, communi-
cate, engage with one another against the hybridized forms of oppression and dis-
crimination that so often do not speak singularly of disability. Discrimination is an
increasingly complicated entanglement of disability, gender, sexuality, nation, ethni-
city, age and class. Critical disability studies have not developed simply to capture the
theoretical interests of scholars, but have developed theories that are in concert with
contemporary lives, the complexities of alienation and rich hopes of resistance. (641)
Indeed, as disability history has shown us, it is not possible to understand how systems of
oppression have worked without disability. We must understand, then, “how disability is figured
in and through these other categories of difference” (Kafer 17). Intersectionality, then, can
invite others into more meaningful allyship. Alison Kafer challenges us to imagine what that
might mean:
This kind of robust combination of future dreams and present critique is essential to
politics, and it requires leaving open the parameters of our political visions. Our ani-
mating questions could then include the following: Who is included or excluded in
our political imaginaries? How are “disability” and “disabled person” (or “woman” or
“queer” or “race” or…) being defined in these dreams of the future? Who has access
to these imaginaries, and how is access being described? (153)
Or in other words, “[h]‌ow can we identify with social categories we don’t identify as and how
can this benefit us all?” (Schalk n. pag.).
There are those critics who see great opportunity in intersectionality, in bringing the notion
of disability into flux, as part of a project of making more complex static or binary notions of
identity. But even as we celebrate this complexity, we must remember that while the cohe-
siveness of disability identity may be productively contested in some areas, it has barely been
broached in others; as Carrie Sandahl observes:
How do we know what we know from the vantage point of living in and with
our very specific bodyminds…? Disabled people are really just at the beginning of
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considering this question, and I worry we are moving too quickly away from disability
identity before mining it for all that our concrete, grounded experiences have to teach
us and others.
(McRuer and Johnson 158)
Nirmala Erevelles further reminds us that disability as part of intersectionality not only establishes
presence, it exposes and disrupts the potentially ableist presumptions of other epistemologies:
Take any radical theory –radical humanism, Marxism, post structuralism, critical race
theory, feminist theory, queer theory, etc. Place a disruptive disability studies in its
midst. Tentatively pose questions. Trouble their assumptions undergirding their alter-
native/radical conceptions of the normal. What is autonomy? When exactly is life not
worth living? Why does rationality have to be the sole determinant of our humanity?
How do we define limit? Listen carefully to their answers. (N. pag.)
And so, drama, as an embodied art, suggests itself at once as a site both of promise but also
peril: it can bring a deeper understanding of the complexity of identity into immediate view,
but it can also paradoxically thwart the very visibility it advances by leaning too heavily on old,
outmoded disability devices.
I offer a case study here of how two contemporary, highly successful American plays, Lynn
Nottage’s Sweat (2015) and Taylor Mac’s Hir (2014), function in this manner. Each play explores
identities lived at the intersection of race, class, gender, and sexuality; each play has moments in
which disability is rendered visible in significant ways. Yet ultimately, each play tends more to
further ableism in the name of countering other kinds of oppression. Sweat and Hir represent
worthy opportunities for rendering porous the seeming strict divisions between identities;
Sweat shows tensions among race, gender, and class, while Hir disrupts normative notions of
gender, class, and sexuality. But their projects are ultimately premised more strongly upon highly
regressive representations of disability, even as they otherwise deepen the understanding of
identity within their contemporary American social and cultural contexts. I examine what
misconceptions and clichés are perpetuated, and what opportunities are missed in the represen-
tation of disability in these two plays. I invite readers to consider my arguments here as a way
to understand the difficult, but essential tangle of bringing forth disability in an intersectional
reading of literary and dramatic works: if we can unearth and unlearn the prejudices on which
progressive work is sometimes based, we can then fully take advantage of the opportunities
represented by the inclusion of disability in drama and other genres.
Sweat
In Sweat, Lynn Nottage creates quasi-documentary theater based on interviews she conducted
in the poverty-stricken city of Reading, Pennsylvania. The play was first performed at the
Oregon Shakespeare Festival in 2015, making its way to Broadway and winning the Pulitzer
Prize for drama in 2017. It was praised by critics, and Charles Isherwood noted that “[c]‌omplex
matters of race, class and culture are handled with impeccable deftness,” as it reveals how racial
prejudice fragments a community bound by privation in an age of globalization (n. pag.). In
a working-class bar in 2000 in Reading, we see bartender Stan welcoming in co-workers
and friends Tracey and Jessie, who are white, and Cynthia, who is African-American. Jason
and Chris, the adult sons of Tracey and Cynthia, are also friends, and everyone works the line
together at Olstead’s factory, as has been the case for generations. Other figures populate the
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stage, including Brucie, Cynthia’s ex-husband, who is on an extended walkout from another
manufacturing plant and has become addicted to drugs; and Oscar, a quiet Latinx busboy.
The play is framed by flash-forward scenes from 2008, when Jason and Chris have just
been released from jail for a crime about which we remain ignorant until the play’s end.
Instead, the seemingly everyday action set in the year 2000 slowly stokes the tensions among
the friends. Cynthia is promoted to manager; her attempts to convince her friends to take
pay cuts only exacerbates Tracey’s resentment, convinced as she is that Cynthia was promoted
because of her race. Olstead’s sends its machines to Mexico, locks the longtime workers out,
and demands draconian pay and benefit cuts in order to keep the plant functional. When the
union stages a walkout and management instead hires replacement workers from the Latinx
community, things snap: in a climactic scene, Jason comes after Oscar (who has secured a
better-paying job at the plant) with a bat, and Chris joins in. But it is Stan who, in trying to
break up the fight, is hit in the head. We learn in the play’s closing moments that he has been
severely disabled by a traumatic brain injury, and it is for this crime that Jason and Chris were
jailed.
The bar is a microcosm for both Reading and America; as in other literary works, the bar
is an expression of local color, and a liminal place where those from disparate backgrounds
can mingle. Here, while racial and ethnic backgrounds differ, the bar’s denizens are bound by
class and a common plight as workers. Part of the play’s verisimilitude is also in acknowledging
the racism and sexism that permeates the place it depicts. For example, Brucie tells the story
of being
at the union office signing up for some bullshit training and this old white cat, what-
ever, gets in my face, talking about how we took his job. We? I asked him who he was
talking about, and he pointed at me. ME? So I said, if you ain’t noticed, I’m in the same
fucking line as you. Hello?!
(Nottage  37–8)
Tracey is hostile to Oscar, who tentatively approaches her early in the play to ask if the plant is
hiring. From him, she learns Olstead’s is seeking non-union workers in the Latinx community
to undercut the union. Oscar, of Colombian descent and born in Berks County, later bitterly
reflects on the community’s hostility:
My father, he swept up the floor in a factory like Olstead’s –those fuckas wouldn’t

even give him a union card. But he woke up every morning at four A.M. because he
wanted a job in the steel factory, it was the American way, so he swept fucking floors
thinking, “One day they’ll let me in.” I know how he feels, people come in here every
day. They brush by me without seeing me. No “Hello, Oscar.” If they don’t see me,
I don’t need to see them.
(Nottage 92)
Yet Tracey can only regard his ambition without understanding, as suspect and a threat.
While Tracey’s reaction to Cynthia’s promotion and Oscar’s aspirations expose her racism,
Nottage compels a viewer to see it as complexly sourced. She has been subject to sexual har-
assment; as she tells Oscar: “You wanna know the truth, the only reason I didn’t get the job is
because Butz tried to fuck me and I wouldn’t let him, and he told everyone in management that
I’m unstable. I’m not unstable. I’m like –” (Nottage 48). Nottage also allows Tracey a moment
of lyrical nostalgia that helps explain her current fear. She remembers her “Opa,” part of the
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German community that founded the town, and the pride she once felt when, as a child, she
accompanied him downtown:
I felt really special, because he was this big, strapping man and people gave him room.
But, what I really loved was that he’d take me to office buildings, banks…you name it,
and he’d point out the woodwork. And if you got really, really close he’d show some
detail that he’d carved for me. An apple blossom. Really.That’s what I’m talking about.
It was back when if you worked with your hands people respected you for it. It was
a gift.
(Nottage 49)
Even if Tracey herself cannot fully recognize the links between her family’s immigrant story and
that of Oscar’s, and that she is making Oscar the visible scapegoat for economic forces neither
can control and the loss of her own white privilege, Nottage still allows her grief and displace-
ment to find expression. Ultimately, her rejection of the fight against a mutual, if not identical,
oppression is tragic.
At first, disability’s role in revealing these links feels promisingly political. In the year 2000
setting, for example, disability is shown to directly result from how companies consider workers’
bodies an expendable and disposable resource. Stan, who almost lost his leg in a plant accident,
is glad his impairment got him out of the factory; Cynthia seeks a management position in part
because her hands are becoming slowly disabled after years of repetitive motion. Nottage shows
us stories of addiction that frame alcoholism and drug addiction as disabilities: they are mental,
emotional, and physical illnesses exacerbated by despair and exhaustion. We see Jessie’s alco-
holism triggered by the grind of intense labor, when she had instead hoped to travel the world
with the husband who instead divorced her to marry a younger woman. Brucie is addicted to
heroin, after having been locked out of work for months; “I useta make fun of cats like me,” he
mourns (Nottage 43). Ironically, we learn it was fighting for the rights of a colleague who lost
his hand that made Brucie a lion of labor activism. But now, he has himself become disabled
through privation:
I was doing my rotation on the line, same as always. And it began to rain, all at once a
downpour, folks fled, but I…I just stood there…couldn’t move. I got soaked through
to my skin. I still couldn’t move. And…and finally someone pulled me into the tent to
get dry, but my whole body was shaking, wouldn’t stop. It was scary. And I hadn’t had
that feeling of being outta control since my mother died.
(Nottage 86)
His fate prefigures Tracey’s: in 2008, we see that she has become addicted to opioids, ostensibly
for back pain but also in response to the privation caused by the lockout.
As the play wears on, however, the presence of disability shifts away from an identity inter-
woven into the social and economic plight of these characters and more toward stereotype.
Disability becomes, in a fashion hearkening back to Richard III and Tiny Tim, shorthand for
a character’s infamy or innocence: for example, 2008 Tracey seems amply rewarded for her
racism, becoming an addict so abject that she can only spare five dollars for the homeless Jason,
demanding its repayment by the next day. By contrast, Stan is the play’s moral center: he is gen-
erally kind, and argues against systemic racism when Jason and Tracey vilify Oscar for crossing
picket lines: “What the fuck do you want him to do? Huh? It ain’t his fault. Talk to Olstead,
his cronies. Fucking Wall Street. Oscar ain’t getting rich off your misery” (Nottage 102). When
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we witness his TBI happen in gruesome, horrific detail, Nottage sets us up to see the other side
of the stereotypical coin: if Tracey’s spectacle of disability marks her infamy, Stan’s marks his
innocence.
The final scene of the play, although brief, affirms this use of disability stereotype and thus
powerfully undercuts the earlier complexity of the play’s use of disability. In 2008, Jason and
Chris have met at the bar –which is now gentrified, trendy, and managed by Oscar –to try and
discuss what happened. Before they can speak, however, the embodied consequence of their
actions literally lurches in from the back of the bar:
(A moment. Jason contemplates whether or not to leave. Then Stan, severely crippled, enters.
A traumatic brain injury. He moves with extreme difficulty; it is painful to watch. Finally.)
CHRIS: Hey, Stan. Stan.
(Stan doesn’t register their presence.)
OSCAR: He can’t really hear good.

CHRIS: Jesus.
(Stan goes about wiping tables.They all watch. Stan drops his cloth. He struggles to get it. Jason
runs over and picks it up.)
STAN: (Garbled): Thank…you.
JASON: It’s nice that you take care of him.
OSCAR: That’s how it oughta be.
(There’s apology in their eyes, but Chris and Jason are unable to conjure words just yet. The
four men, uneasy in their bodies, await the next moment in a fractured togetherness. Blackout.)
END OF PLAY
(Nottage 112)
Disability (problematically described as being “severely crippled”) is represented here as a cau-

tionary tale: do not foment hatred, or tragic disablement will be the result, falling on the
innocent. I do not mean to deny the reality of physical, disabling violence as a result of racism;
I also do not mean to deny innocent people are hurt by racism.Yet Stan’s whiteness reinscribes
the unspoken notion that disability is a white identity, and displaces the many bodies of color
disabled and erased by racial violence. Instead, the pathos of Stan’s entrance leaves the audience
weeping (as they were in the performance I saw) over an individuated, sentimentalized image
of disability.
Up until Stan’s entrance, the fact that apparently nondisabled actors are playing disabled roles
has an important ambiguity to it. We do not know that the actors’ bodies are not achy, disabled,
or subject to addiction; this use of non-apparent disability intriguingly complicates debates
about what an “authentic” disability portrayal might look like, and whether it necessitates a
disabled actor. But the portrayal of Stan falls firmly in the category of melodramatic “cripping
up,” its depiction of traumatic brain injury meant to serve as symbolic shorthand rather than
nuanced representation of disability. (While I have argued we do not know if the actor playing
Stan is nondisabled, clearly he does not have a traumatic brain injury as debilitating as his
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character’s.) Indeed, the play seems to go out of its way to show that Stan is now the opposite of
everything he once was, i.e., virile, strong, and flirtatious, since becoming severely disabled. His
costume shifts from rugged working-man’s chic to anonymous, all-white clothing and heavy-
looking therapeutic sneakers. He cannot hear, can barely speak, and moves in a tortured fashion,
his injured arm held awkwardly against his chest. In short, disability is represented as emascu-
lating and dehumanizing, its very presence upbraiding Jason and Chris.
In the end, described as a moment of “fractured togetherness,” disability equals broken-
ness: as broken as the trust, class, and race relationships in Reading, as broken as the men
(although not the women) who share the final stage picture (Nottage 112). Stan’s damaged
presence serves as symbol, moral rebuke, and implicit catalyst for change. But with it, it seems
we are simply back in the terrain of narrative prosthesis, where disability creates a metaphorical
opportunity within a narrative catalyzing the solution that solves the “problem” of its very exist-
ence (Mitchell and Snyder 47).We see this fully operational in this ending; there is the potential
of progress, suggested through Oscar’s care of Stan:
By [the end]…Oscar has literally switched positions with Stan. He is now the man-
ager and weekend bartender, while a severely brain-damaged Stan clumsily wipes the
tables… .While Oscar symbolizes a rise in Latino business leadership in Reading, he
also portends a recovered sense of humanity among these workers, whose lives have
intersected in such tragic ways.
(Mohler et al. 85–6)
But if there is progress to be had by the workers recognizing their commonality and caring for
each other, disability will have no agency or presence within it. Kafer identifies this as a popular
belief, one that denies a possibility of a “crip futurity”:
If disability is conceptualized as a terrible unending tragedy, then any future that

includes disability can only be a future to avoid. A better future, in other words, is one
that excludes disability and disabled bodies; indeed, it is the very absence of disability
that signals this better future. The presence of disability, then, signals something else: a
future that bears too many traces of the ills of the present to be desirable. (2)
We have ended with an act of charity –with pity, rather than empathy. Sweat calls for characters
to make change by recognizing their interconnectedness, yet disavows disability either as a
source for that change or importantly bound up in it.
Hir
Taylor Mac’s Hir debuted in 2014, and had its New York premiere in 2015; it has since been
performed in London and by prominent regional theaters including Chicago’s Steppenwolf
and Washington, D.C.’s Woolly Mammoth. Generally well-received, it has many thematic simi-
larities to Sweat: both premise the necessity for imagining new futures in the face of violent
social oppression, compelled by alliances across multiple identities. In the case of Hir, trans-
gender identity becomes a model for wildly imagining beyond the patriarchy that has oppressed
women, and queer and transgender people. Hir follows Isaac, a soldier who has been dishon-
orably discharged from the Marines on his first –and, as it turns out, last –day home with his
family: father, Arnold; mother, Paige; and sibling, Max. He returns home to find transitions of
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all kinds; his once violent and abusive father has literally become disabled by the changes in the
world that have disrupted his white, male privilege:
PAIGE: He lost his job of thirty-three years to a Chinese American woman. A plumber
who is a Chinese American woman. It was fantastic. But bereft of you and his customers
to spray his red-faced spittle on, he doubled down on Max and me.Three times I had to
take Max to the emergency room. Three times, Isaac.
… .
He couldn’t handle the pressure of actually having to change to keep up, so about a year
ago, blood decided it wouldn’t go to his brain and he had a little stroke.
(Mac 18, 19)
Paige now revenge-dresses Arnold in nightgowns, diapers, and clown makeup, feeding him
estrogen to keep him docile; Max is the “hir” of the title who is now transitioning away from
female. Paige has let the house fall into disarray; as she tells Isaac, “We don’t do cupboards
any more. We don’t do order” (Mac 13). Instead, she says, “I’m all about the metaphor now,”
determined as she is to blow up patriarchal order and celebrate what she heralds as the arrival
of the new, embodied in her youngest child: “Max is the root of who we are. Truly. The root of
who we are and the cusp of the new. There has never been any such thing as men and women
and, Isaac, there never will be” (Mac 22).
Ultimately, these disruptions prove too much for Isaac. While Paige and Max go out on
“homeschool cultural outing day,” he tries to reorder the house by cleaning up, cooking, and
reminding a confused Arnold what his role as a man once was:
And you take up space. You sweat. You leave your mark. Yellow stains on everything
white. Under your pits, around your collar, on the toilet seat.You dole out allowances
and punishments.You give me, you give Mom, us, bruises, welts when we do things or
when we’re too loud.You break our fingers if we leave a dirty dish in the sink.
(Mac 53)
When Paige and Max return, the inevitable confrontation happens. Paige angrily shows
Isaac the holes in the walls the old Arnold made with his fists, depressions her body made
being thrown up against the drywall, and explains why she wants to –quite literally –blow
everything apart:
He married me and built this because he thought we were things he could control.
Cheap plywood and glue. This is the kind of house you can make a hole in from
punching. That’s not a house. It’s him wanting to be more powerful than the home.
Do we agree there is nothing to make from this? You want to be better? Go on a hunt
for pipes, clog them up, and applaud as your father’s world explodes. Screw the Middle
Class. WE ARE THE NEW. BEYOND GENDER. BEYOND POSSESSIONS.
BEYOND THE  PAST.
(Mac 85)
But in this house, everything again devolves to violence: Arnold hits Paige, Paige hits Arnold,
and Isaac finally has the massive PTSD explosion that has been building throughout the play: he
punches Paige, then smashes an air conditioner with a bat.
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Paige then banishes Isaac from the house, believing him to be as much a casualty of toxic
masculinity as those whose bodies he once retrieved:
Wipe your tears. Pull yourself together and listen to me. It’s why we sent you, all the
boys, to the wars to begin with. What do you do with the leftover pieces? You can
pretend you will use them for something but you never will. At a certain point you
have to dispose of them.
… .
You are no longer necessary. For the rest of your life you will pick up useless pieces.
Mourn your dead.Your death.
(Mac 87)
Paige consigns Isaac to the ranks of the bus-station addicts she made him pass in walking home.
The play ends with a shattered Isaac, collateral damage of patriarchy, leaving, and Max tending
gently to cleaning Arnold, who has wet himself out of fear, even as a sobbing Paige tells hir to
“[l]‌et it rot” (Mac 89).
Mac bluntly points out that the purpose of the play is to “tear apart the old regimes,” blowing
up institutions of the kind in which the playwright was raised, and so in Hir we have “simply
realistic characters in a realistic circumstance that is so extreme it is absurd” (Mac ix).The house
is cheap plywood, built on a landfill, and has replicated itself in a neighborhood where everyone
has “had to get three jobs, never see their kids, and still can’t make ends meet, all so they can
keep their Formica countertops” (Mac 36). Paige refuses to enable class anxiety or play com-
pliant housewife anymore and so the house, like compulsory domesticity for which it stands, is
disintegrating:
Dishes are piled up in the sink, cracking wallpaper and decade old stains, piles of laundry (to
the point where it’s difficult to walk) are strewn about, and there seems to be a layer of dust on
everything. It is an absolute disaster in terms of its disorder.
(Mac 64)
For Paige, there is exhilaration in throwing off old orders: tutored by Max’s transition, she
welcomes the sea change that Arnold feared:
I discovered the most amazing thing, I [Isaac]. It used to be you could be a mediocre
straight white man and be guaranteed a certain amount of success. But now you actu-
ally have to improve yourself. Because now…(in a mock horror movie trailer voice) The
darkies have come. And the spics. And the queers. And those backstabbing bitches
waiting to get at the mediocre white man the minute it becomes known he is barely
lifting a finger but thinking he is lifting the world.
(Mac 17)
Paige and Max revel in the “paradigm shift” that is occurring in their house, and the rapid-fire,
pell-mell creativity that they are engaging as an answer to that.
Peter Marks observes that:
[o]‌ne of the pleasures of Hir is that absolutely nothing is sacred. Whether it’s Isaac’s
PTSD or Arnold’s infirmity or Paige’s efforts to find herself or even Max’s struggle to
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claim a new identity, Mac’s nihilistic perspective reminds you that all in the landscape
of eternal sunshine is just groping in the dark (n. pag.).
But in actuality, the play’s subversive quality rests firmly on its maintaining a highly conserva-
tive and traditional use of disability (suggested by Marks’ ableist use of blindness as an image
of obliviousness); for instance, it is wielded in the play as comic effect. Arnold first appears
eating “a bowl of mush, as someone with brain damage would,” while Paige treats him like a recalci-
trant house pet, ordering him around and spraying him with a water bottle (Mac 5). Aphasiac
and childlike, Arnold babbles and constantly holds his so-called “best friend”: his penis. While
Arnold implodes, Isaac explodes; soldiers in mortuary divisions (Isaac’s assignment) have some
of the highest rates of PTSD in the armed forces, yet his is played for laughs. Dishonorably
discharged for smoking methamphetamine through his anus, he keeps vomiting into a sink
every time he hears a blender or hears about some way his home has changed; his aversion to
literal and figurative fragmentation becomes a recurring comic bit.
Disability is also the punishment rendered on all the characters who have engaged in a
destructive version of masculinity that supports stereotypical ideas about what it means to
be a “real man”: be “ ‘[t]‌ough, strong, never show weakness, win at all costs, suck it up, play
through pain, be competitive, get rich, get laid’ ” (Kimmel and Wade 238).While Isaac notes that
“[t]he only useful job you can have in the places where everything is blown up is to care for the
pieces,” Paige will brook no pity:
PAIGE: To have empathy for some kid whose parents were blown to pieces by a fighter
droid; that is a good thing. To have empathy for a man who hoards patriarchal privilege;
that is bolstering his dominion. And we are not about shoring up [indicating house] this.
We’re on a perpetual trip to bolster the new.
(Mac 82)
Even as Isaac cries for help, Paige sends him away, acidly saying “I would tell you to kill your-
self but I don’t want to clean the mess” (Mac 79). Neither Isaac nor Arnold are part of a crip
futurity; Isaac is banished to be “on the street…with your brothers and your fathers and your
ruined…possibilities” while Arnold is last pictured having wet himself, regressed to the status
of a whimpering infant (Mac 87). The men are literally blown to pieces, unable ever to be
reassembled into something new.
The choice to make Isaac a veteran returning from Marine Mortuary Affairs duty is par-
ticularly fraught beyond the comic use of PTSD. In using Isaac’s military service to critique
toxic masculinity, Mac perpetuates the way, stretching back to World War I, in which American
society has feared what historian John Kinder calls the “Problem of the Disabled Veteran.” This
“problem” consists in the way that, according to Kinder, “many in the United States came to
associate war-related disability with a host of social ills: pathological dependency, compromised
masculinity, and the crippling legacies of foreign intervention” (3–4). Paige’s angry rejection of
Isaac represents his wounds as a personal failing, and implies the same to be true of all traumatized
soldiers. His disappearance will only contribute to a state of affairs in which: “[t]‌he high rates
of homelessness and substance abuse among Iraq and Afghanistan War veterans suggests that
many are in danger of disappearing altogether, swallowed up in the permanent underclass that
has come to define large segments of twenty-first century American society” (Kinder 297).The
deep irony is that in revealing how she has been abused for years, and subject to her own phys-
ical and mental disablement, Paige still maintains a deep disability hierarchy between “innocent”
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and “guilty” victims –and, in so doing, perpetuates a powerfully ableist (not to mention, iron-
ically, a highly patriarchal) status quo.
Hir also ignores important ways in which trans identity and disability are interwoven. Eli
Clare reminds us that both identities have been circumscribed within the medical-industrial
complex as needing cure: “Until the early 1990s, when trans communities began finding strong,
collective voices, medical providers’ explicit goal for gender transition was to create normal
heterosexual men and women who never again identified as trans, gender-nonconforming,
gay, lesbian, or bi” (Brilliant 178). Hir suggests progress in this regard; Max refuses such binaries,
evoking a world with more gender possibilities, as hir mother joyfully observes: “There are no
longer two genders. No longer simply a Y and X chromosome but an alphabet of genders.They
call it the LGBTTSQQIAA community” (Mac 21). The disabling changes Isaac and Arnold
undergo, by contrast, are not transformations to be understood or embraced, but rather, sym-
bolic of and the outcome of pathology, to be endured until the characters either disappear or
die. Max’s change is posited with whimsy and humor, but what about the experiences of trans
viewers for whom the difficulties of transition go beyond whether they can learn to play the
banjo and yearn to join a “commune…for anarchist queers” (Mac 46)? The medical aspects of
Max’s transitioning, being on what Paige calls the “mones” (hormones), is treated for humorous
effect rather than introduced as a disability issue; there’s no real exploration of that paradox
Clare points out, that transitioning can require a complex negotiation between eschewing the
ableist language of transition-as-cure and embracing medical intervention. The play thus per-
fectly embodies a state of affairs trans disabled scholar Alexandre Baril decries: “Not only is the
question of disability forgotten [in trans studies and activism], but the quest to depathologise
trans identities also often uses disabled people for its own purposes” (64).
Conclusion
I want to end this analysis of Hir and this essay, however, offering a bit of hope. The exploration
of intersectionality with disability is vital if political projects of representation are not to repro-
duce ableist ideas that are repressive. Where the ending of Sweat denied crip futurity, I do think
that the very final image of Hir hints at a very different intersection of disability with othered
identities. After Paige has kicked out Isaac, Max goes worriedly to the window, upset that Isaac
has passed out of view. Although Paige tries to rationalize her choice, Max is having none of it:
Max: I don’t want to be here.

Paige: You don’t have to be.
Max: I don’t wanna be here with any of this.
Paige: Good.
Max : There are places where it’s easier. Where people aren’t like this.
Paige: I know.
Max : It, you, it’s all debris. (Mac 88)
Max has recognized Paige’s part in perpetuating as patriarchal a world as Arnold had. Whereas
before ze celebrated the “karma” that led hir to follow Paige’s lead and alternately torment and
abandon Arnold, ze seems to have recognized the ways in which this perpetuates destruction.
Paige has insisted that Arnold “has not earned the right to be cared for,” but the play closes with
Max transitioning in a different way: toward ethical caregiving (Mac 43). The play closes with
Max tenderly cleaning Arnold: “Arnold puts his arms up and Max takes his wet nightgown off (he
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wears a diaper underneath). Max brushes Arnold’s hair down, calms him, and starts to clean up the urine
with a nearby towel” (Mac 89). What we are left with is an image of one vulnerable body caring
for another across difference, not because Arnold merits it, but because his is a body in crisis.
The ending is still fraught: Arnold is still a disabled body played for spectacle by a nondisabled
actor, and made particularly abject in the end. But Mac underscores the act of Max’s purposeful
turning away from Paige and her bankrupt definitions of the new. Max will not enjoy the
approbation of anyone for hir act of pity, yet ze chooses to ally herself with precarity and com-
munity, rather than continuing to simply reverse power relationships. Ironically, at the moment
Hir seems to cement ableism and humiliation, it also hints at what might be initiated by approxi-
mating an ethos of disability. What would Hir and Sweat look like –indeed, what kind of trans-
formational power could they wield –if they could, in fact, imagine disability in ways that make
it more visible as a social and relational identity, one implicated in and essential to the fight
against wide-scale oppression?
As literary critics, teachers, and artists, we have a responsibility to understand that identities
are contentious, contestable, and intersectional. One of the critical things that disability studies
offers us as readers is the awareness that representations that otherwise purport to be progressive
often build their liberation on the continued subjugation of disability. And since representation
creates reality, this has material consequences in the world beyond the boundaries of the stage.
All this is not to say that disability should be romanticized, or that disabled characters must
either be inspirational or always have happy fates. But as we contemplate the good that inter-
sectional representations can do, neither must disabled characters, and the lives they represent,
be vilified and erased. To understand how disability is intimately bound up in –and indeed, has
been used to help create –outmoded ideas about race, class, gender, and sexuality, is to increase
liberation for all bodies, and to imagine a future in which disability identity is visible, vibrant,
and valued.
Works cited
Baril, Alexandre. “Transness as Debility: Rethinking Intersections between Trans and Disabled
Embodiments.” Feminist Review 111 (2015): 59–74.
Clare, Eli. Brilliant Imperfection: Grappling with Cure. Duke University Press, 2017.
———. “Excerpt from: Digging Deep: Thinking about Privilege,” eliclare.com, 2003, www.eliclare.com/
what-eli offers/lectures/privilege. Accessed 24 Sept. 2017.
Erevelles, Nirmala. “Thinking with Disability Studies.” Disability Studies Quarterly 34:2 (2014), http://dsq-
sds.org/article/view/4248/3587. Accessed 1 Oct. 2017.
Fox, Ann.“Fabulous Invalids Together: Why Disability in Mainstream Theater Matters.” Disability,Avoidance,
and the Academy: Challenging Resistance, eds. David Bolt and Clare Penketh. Routledge, 2015: 122–32.
Goodley, Dan. “Dis/entangling Critical Disability Studies.” Disability & Society 28:5 (2013): 631–44.
Isherwood, Charles. “Lynn Nottage’s Sweat Examines Lives Unraveling by Industry’s Demise,” The
New York Times, 16 Aug. 2015, www.nytimes.com/2015/08/17/theater/review-lynn-nottages-sweat-
examines-lives-unraveling-by-industrys-demise.html?mcubz=1. Accessed 15 Aug. 2017.
Kimmel, Michael, and Lisa Wade. “Ask a Feminist: Michael Kimmel and Lisa Wade Discuss Toxic
Masculinity.” Signs: Journal of Women in Culture and Society 44:1 (2018): 233–54.
Kinder, John. Paying with Their Bodies: American War and the Problem of the Disabled Veteran.” University of
Mac, Taylor. Hir. Northwestern University Press, 2015.
Marks, Peter. “Taylor Mac’s play ‘Hir’ Shows an America That’s Groping in the Dark for Its Moral Identity,”
The Washington Post, 29 May 2017, www.washingtonpost.com/entertainment/theater_dance/taylor-
macs- p lay- h ir- s hows- a n- a merica- t hats- g roping- i n- t he- d ark- f or- i ts- m oral- i dentity/ 2 017/ 0 5/
29/fc1ba826-4491-11e7-98cd-af64b4fe2dfc_story.html?utm_term=.ecc20115c184. Accessed 27
Sept. 2017.
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McRuer, Robert, and Lisa Johnson. “Proliferating Cripistemologies: A Virtual Roundtable.” Journal of
Literary & Cultural Disability Studies 8:2 (2014): 149–69.
Mitchell, David T., and Sharon Snyder. Narrative Prosthesis: Disability and the Materiality of Metaphor.
Mohler, Courtney Elkin, Christina McMahon, and David Román. “Three Readings of Reading,
Pennsylvania: Approaching Lynn Nottage’s Sweat and Douglas Carter Beane’s Shows for Days.” Theatre
Journal 68:1 (2016): 79–94.
Nottage, Lynn. Sweat. Theatre Communications Group, 2017.
Schalk, Sami. “Coming to Claim Crip: Disidentification with/in Disability Studies.” Disability Studies
Quarterly 33:2 (2013), www.dsq-sds.org/article/view/3705/3240. Accessed 1 Oct. 2017.
Whoriskey, Kate (dir.). Sweat. By Lynn Nottage. Perf. Carlo Albán, James Colby, Khris Davis, Johanna Day,
John Earl Jelks, Will Pullen, Lance Coadie Williams, Michelle Wilson, and Alison Wright. Studio 54,
New York. 17 May 2017. Performance.
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25
PUPPETS, PLAYERS
AND THE POETICS
OF VULNERABILITY
Hijinx’s Meet Fred and new directions in
the theatres of learning disability
Matt Hargrave
This chapter reframes learning disability as an aesthetic potential, rather than a pervasive social
burden or injury. This is in opposition to an often-patronising standpoint that sees theatre,
whether via advocacy or therapy, as something that gives learning disabled persons “a voice”. It
involves a close examination of a single live performance and demonstrates that theatre has the
potential to radically undermine normative misperceptions of learning disabled persons. These
misperceptions include: an inept social identity; an unproductive and overly dependent way of
being which makes such persons burdensome and of secondary cultural value. My goal here is
to show how performance can both utilse and develop new ways of considering issues of per-
sonhood, care and authorship.
Four key principles underpin the writing: first, that dominant existing theories (social and
medical models) are inadequate as a means of reflecting on work of increased aesthetic com-
plexity; second, that cognitive disability can be viewed as aesthetic potential in works of art,
as much as societal stigma in real life; third, that any understanding of contemporary artworks
must be rooted in a genealogy of the cultural forms that learning disability has engendered in
history; and fourth, that debates about aesthetic quality and the making of value judgements are
vital to the appreciation and development of theatres involving learning disabled artists. Such
an approach is grounded in critical disability studies, which distances itself from both medical
and social models and is most clearly articulated by Margrit Shildrick, who speaks not to “an
absolute difference between those who are disabled and are those who are not but rather to a
deeply disconcerting intimation of commonality” (4). In sum, she argues that disability can no
longer be reduced to a binary difference; rather its appearance highlights the profound inter-
connectedness of all identity; all persons should be validated as desiring subjects; non-disabled
persons have as much right –and responsibility –to speak about these issues as disabled persons;
and that all these issues are more complex than material exclusion (and thus cannot be “solved”
purely through redistribution of resources).
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Matt Hargrave
This standpoint is useful when analysing artworks which are highly collaborative in nature,
such as the play Meet Fred (2017), which I utilise as a case study. Meet Fred by Hijinx Theatre,
based in Cardiff, Wales, was made in collaboration with puppet company, Blind Summit, and is
an apt example of the opportunites that are generated by a close reading of a live artwork. It is a
show about a puppet, Fred, who comes to life at the start of a show with no idea who or what
he is.Visually, he is a simple Bunraku training puppet, who has to create both the play and his
own identity as he goes along. Fred is a cloth puppet with no joints or distinguishable features.
Blind Summit use such puppets as training tools in their style of Bunraku, a fact amplified at a
late point in the show when Fred is revealed to be one of a dozen puppets in a box: not even a
“real” puppet but a preparation for one. He is never anything but a puppet. As he is made aware
from the start:
Fre d: But you’re the Director, what do you want me to do?
Director : No I need it to come from you.
Fre d: What?
Director : Look Fred, you’re a blank canvas…
Fre d: Literally
Fred is, literally, a tablua rasa: a image on which to project. As the play, both slyly and rau-
cously, encourages the spectator into believing, he is also a metaphor for the journey of a
learning disabled protagonist through life: he must make his way through various picaresque
adventures –a difficult birth; a growing awareness that he is different from the people around
him; the difficulty of finding employment; of finding love; and finally an ambiguous suicide
attempt –in constant need of support by willing others, in this case, three puppeteers, a dir-
ector, a stage manager and his own maker. Although deliberately told as an irreverent, sur-
real fairy tale, the play makes its politics plain: Fred is forced to go looking for work under
the threat of losing his “PLA” (Puppet Living Allowance). The mise-en scene is dominated
by three huge blackboards on which the possible scenes of the show are written in chalk
and constantly referred back to, for example, “Date Night”; “Prison”; “Dream Sequence”;
“Waking up Routine”. The fact that some of them do not happen (“Prison” for example)
adds to the sense of playful chaos and dislocation. They represent not just the fragmented
narrative but the absurdity of the bureaucracy that surround Fred: the need to look for work
which will simultaneously irradicate his benefits. I argue that the play depends on both an
audience’s attachment to a non-human transitional object (the puppet, Fred); and on the
projection of Fred onto the human actor (Gareth John) who has Down’s syndrome –a vis-
ible or “legible” disabilty –and who thus share a common vulnerability. It is the relationship
between the human and the non-human (or the projected human) onstage which allows
the play to embody what I refer to as a poetics of vulnerability: the aesthetic manifestation
of shared human experience, which can never exist autonomously. This chapter contends
that learning disability, and vulnerability more widely, is an interruptive value, both socially
(because it upsets the myth of the autonomous self) and aesthetically (since it opens up
the closed aesthetic artefact); furthermore, that it invites spectators’ complicity; and that
vulnerability –like puppetry –openly avows support structures usually hidden in public
performance.
To speak of intellectually disabled performers is to speak of adults whom society defines as
vulnerable: vulnerable to physical attack, verbal insult; to cultural, social and genetic erasure.
These themes recur continually in mainstream media. Criticism of Sally Philips’ 2016 BBC
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Puppets, players and poetics
documentary, A World Without Down’s Syndrome, centred on a perception of the film as one-
sided, and somehow against the rights of women to make their own choice:
…the big conflict for women is the adult the child will be in 20 or 30 years down
the line. For most women, that is the bit that tips them to end the pregnancy. An adult
who will be at best vulnerable.
(Jane Fisher, Director of Antenatal Results and Choices, UK, quoted in McVeigh 2016)
Strange that: “an adult who will be at best, vulnerable”, as if that is the lowest expectation
of a human. But at our best, we are all vulnerable. That is what makes us human, allows us to
connect with others. I contend that any discussion of inclusion or access should also rethink
issues of human fragility, precarity, risk, care and connectedness. The word “inclusion” often
attains great irony; for example, when used to describe punishment spaces in UK schools which
are known as “inclusion rooms”. Exclusion is always included in inclusion. In the index of my
previous book (Hargrave 2015) the word “inclusion” appears, by chance, between “improvisa-
tion” and “incubus”. At its most creative, inclusion forces us to improvise: to translate, to listen
closely to others, to unblock, encouraging new insight and spontaneity. As incubus, inclusion
creates difficulty and anxiety. Inclusion always involves a disruption of the everyday dramaturgy.
Vulnerability is built into theatrical dramaturgy. Public performance does away with the safety
net of script and rehearsal room and transports its actors into places unknown: strange buildings,
new people, watchful eyes, friendly at first yet expected to cast a critical eye. The presence of
disabled performers on a public stage is an opportunity, then, to think about how social vulner-
ability might be perceived, but also to think about the power of performance to circumvent the
more negative connotations of that vulnerability.
In what follows I engage closely with Erinn Gilson’s work on vulnerability: her refusal
to accept the normative frame of vulnerability as a given, but rather to examine how vul-
nerability is constructed as a problem. Gilson’s eloquent and exhaustive Ethics of Vulnerability
(2013) explores the implications of three assertions: first, that the normative equivalence of
vulnerability with weakness devalues vulnerability as something socially “bad”, to be disavowed
where possible; second, that vulnerability can be viewed as an ethical resource that helps mani-
fest virtues of empathy; and third, that vulnerability is often reduced to a state of perpetual risk
(a rather than productive potential). I argue that a fourth implication arises from this critical
work: that vulnerability is an aesthetic resource.
The chapter expands these questions afresh to consider how the play deals with personhood.
What is a moral person? What is a puppet? What is a knowing subject? What does it mean, both
for puppet and play, to be –or to act –self-aware? The chapter draws on Michael Bérubé’s The
Secret Life of Stories (2018), which seeks to release intellectual disability from its representation in
literature, and rather consider how it permeates form: specifically, how fictional “deployments”
of disability go beyond rendering or diagnosing of disabled characters and become narrative
strategies which explore human thought and experience. In this chapter I consider how self-
reflexive storytelling and puppetry are deployed within the narrative fiction to enable us to
think again about how personhood (knowing, rational, autonomous) is constructed. The very
notion of being a person in one’s own right is complicated by intellectual disabilities, not least
because of the role of significant others and carers in the making of everyday decisions. By
taking the more generative aspects of vulnerability as a starting point it may be possible to see
such questions afresh: to think about how shared responsibilities are acted through the drama,
to think about personhood as always in relation to, as opposed to independent from, others.
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Matt Hargrave
Vulnerability as interruptive value
Meet Fred is a self-reflexive picaresque comic epic which begins with the birth of Fred.
Fre d: This is a show…about me?…I don’t know anything about myself! I don’t know
anything about the show!
Director: Well that’s up to you Fred, it’s your show
Fre d: Hang on, why don’t I have a script?
Director: You don’t need a script
Fre d: What do you mean I don’t need a script?
Fred doesn’t know who he is. The play breaks with the unity of the proper or the orderly and
composes itself via juxtaposition and interruption. It achieves its effects by continually undoing
the proper play: the story of Fred’s journey through the world.This is the first principle of what
I will call the poetics of vulnerability: that vulnerability is an interruptive value. These constant
shifts of mood and perspective do not just undo the aesthetic but point also to vulnerability
as a frame: that is, a fixed, uninterrupted state, rather than a set of contextual relations. They
enhance, rather than undermine, vulnerability, since they demonstrate how survival is so often
underpinned by dark comedy, itself a distancing device. The show is based on a conceit: the
meta-theatrical device of interrupting Fred’s journey with interjections from the director, Ben
Pettitt-Wade, who becomes increasingly frustrated by Fred’s criticisms of the way his story is
working out; and also by the ineptitude of the stage manager, Martin (Gareth John), who is
the only identifiable learning disabled performer. Whilst “Martin” has less stage time than Fred,
his presence and ongoing struggle with the director is no less vital and compelling. Martin is
treated to a series of worsening criticisms by the director, which culminates towards the end of
the show in a staged walkout. The show derives both its comedy and its discomfort from the
direct abuse which both Fred and Martin suffer at the hands of the director. As Pettitt-Wade’s
fictional director states in the show:
I’ve had enough of this, Martin, all you’ve had to do is move a couple of boxes about,
and you can’t even do that, you’ve been peeping though the back, walking back and
forth, we can see you, you know, you’re not invisible, everything I’ve asked you to do
you’ve fucked up, look Martin, just fuck off.
Within the context of the show this is both hilarious and deeply uncomfortable. It is left to Fred
to resolve the tension by cleverly inviting Martin to become one of his puppeteers:
Fre d: Martin, you said you wanted to be my legs, why don’t you be my legs?
M arti n: The Director said I wasn’t good enough I’m not good enough!
Fre d: Don’t listen to the Director, he’s gone now anyway, which means you’re in charge.
You can do what you like, if you want to be my legs, you can be my legs.
The two characters are entwined. It is Martin as Stage Manager who carefully brings the puppet
onstage at the start and who takes him off at the end.Yet the constant message, relayed by others,
is that they are less than competent. As the director says to Fred, “You’re not even a real puppet,
you’re just a prototype.”
Judith Butler argues that frames –intellectual frames: how we view the world –provide
conditions of intelligibility and thus “organise visual experience” (3). Dramaturgical choices
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frame the way one views a work, but prior to this one already has a view of what the frame
should be. Normative ideas about vulnerability –weakness, individual tragedy –frame the way
we look at vulnerability: the frame is not neutral. Thus, the job of criticism is to lay bare the
device, so to speak, to reveal what is usually taken for granted. Meet Fred continually undoes any
attempt at a closed –or normative –aesthetic system. Each frame is continually being undone
by another: the frame of the stage manager, who brings the puppet onstage; the frame of the
puppeteers who greet the audience as “themselves”; the frame of the puppet who invites us into
a fictional realm; the frame of the director who interrupts the action onstage; the frame of the
sign interpreter who watches and reports back on the action silently. At one stage, Fred’s maker
–a director surrogate –shows Fred that this is “just” a play. She goes offstage and opens the door
to the outside world. She then reveals herself as not even his maker, as “just” an actress. Even
more startling is the end of the play, in which we see Fred seemingly flying, able to achieve his
dreams, to be, as he tells Martin, anything he wants to be. But the play never allows us to settle
in a comfortable illusory world: the house lights come on. Fred acknowledges he is a puppet
who cannot fly. He falls to the ground. End of play: a kind of botched, ironic suicide. The play
never allows the audience to settle in a single system of representation.
Bérubé makes a vital connection between narrative self-reflexivity and learning disabilty.
Via an analysis of a wide range of literary texts, Bérubé conveys frequent instances where the
presence of a learning disabled character in a narrative leads to, or is concurrent with, literary
self-reflexivity (metafictional conceit; doubling of authorship; and proliferation of texts within
texts, leading to narrative irony):
Each of these narratives –Curious Incident, Don Quixote, Henry IV, and Galaxy
Quest –involves a character or characters (in one case, a narrator) whose intellectual
disability entails a diminished or non-existent capacity for metarepresentation, and
who thereby (a) produce metafictional textual effects, and (b) in the course of pro-
ducing metafictional effects, break their narratives’ fictional frame in such a way to
confirm it. (144)
For Bérubé, such devices point to wider questions of consciousness, about who is capable of
self-consciousness and those who “cannot fully account for themselves” (122). In theatre, such
metafictional effects are strongly present not just in Meet Fred, but in other recent works fea-
turing learning disabled artists. Australian company Back to Back’s Ganesh and the Third Reich
(2012) is based on the conceit of the actors purporting, for large sections of the piece, to por-
tray “themselves” rehearsing the play. (Actor Scott Price claims at one point that his colleague
Mark Deans cannot tell the difference between fiction and reality, that “Mark’s mind is probably
working like a goldfish”.) British company Mind the Gap’s Contained (2015) played endlessly
with slippages in real and stage time, often mediated by live-action recordings of the stage as the
play advanced. In both cases, the shows were responses to the question of authorial ownership.
Ganesh grew out of an experience the company had touring the previous work (Food Court
2009) when Artistic Director Bruce Gladwin was asked by staff in one of the receiving venues
to clarify if the ensemble knew whether or not they were acting. Contained was an attempt to
transition from the strongly fictionalised world of previous shows by focusing on the individual
personas of the ensemble. It is relevant, then, that some spectators I spoke with felt uncomfort-
able with the fact that the learning disabled actor in Meet Fred had comparatively little stage time
and played a menial role. In the case of Meet Fred it is relevant to note that spectators –myself
included –often make assumptions about who does or does not “have” a disability. The show,
in point of fact, featured two actors (Richard Newnham and Lindsay Foster) who identify as
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Asperger’s. Pettitt-Wade reports that several spectators did not think these actors had disability
because “they were such good actors” (“Interview”). It is also relevant that much of the material
set in the Jobseeker’s centre was closely based on Newnham’s own experience:
I think this balance is important to state in terms of the making of the show and own-
ership –in truth scenes like the Job Centre scene came entirely from Richards own
experience with the benefits system as a person with Asperger’s, the only difference
being that he gets to turn the tables and take on a position of power in the show. He
has said himself in many Q&A’s that he saw this as an opportunity to vent his frustra-
tion and inject as much venom into the character of Jack as he had been subjected to.
(Pettitt-Wade “Email Correspondence”)
What I want to explore is the question of why the metafictional devices mentioned above
are present and what they generate aesthetically. One answer to this question has to do with
fools. The theatrical fool has always strained the boundary between on-and offstage, and often
functions dramatically as a punctum indifferens: a still point of reflection amid chaos. It is well
known that Shakespeare’s fools exist both inside and outside the play proper, allowing the
author a chance to comment on the work. In King Lear (1606), the fool has attained the power
to comment on tragedy in a way that no other character could. As George Orwell notes:
The fool is integral to the play. He acts not only as a sort of chorus, making the cen-
tral situation clearer by communicating it more intelligently than the other characters,
but as a foil to Lear’s frenzies. His jokes, riffles, scraps of rhyme, and his endless digs at
Lear’s high-minded folly […] are like a trickle of sanity running through the play, a
reminder that somewhere or other in spite of injustices, cruelties, intrigues, deceptions
and misunderstandings that are being enacted here, life is going on much as usual. (42)
Orwell argues that the fool is the author’s mouthpiece for subversive social commentary and
that “if he had been forced to take sides in his own plays, his sympathies would probably have
lain with the fool” (49). Two main principles may be drawn here: first, that the fool is not just
part of, but constitutive of theatre; and second, that the aesthetic value of the fool’s role is rooted
in, and draws power from, a radical ambiguity. Perhaps the essential ambiguous question of Meet
Fred is: Who is my creator? Who is the one who knows? The proliferation of authority figures
who purport to know (directors; puppet controllers; Jobseeker’s bureaucrats; fictional creators;
stage managers) represent the very real lived existence of learning disabled persons who exist
in a world of urgent co-dependency; but it also points to a wider philosophical question: What
does it mean to know? And how can you trust the ones meant to know? The events of the play
undermine a belief in knowledge providers: they carry out their prescribed social role with
cruel impunity (the bureaucrat); they take out their frustration on their employees (the dir-
ector); they leave you more lost and alone and confused than before (your creator). They stare
and laugh sometimes but don’t intervene when you need their help (the audience). This leads
to the formal aesthetic question: Whose show is this anyway? Author/authority are entwined.
This hints at the second answer as to why the metafictional elements are so crucial, which
is related to more prosaic questions of time and rehearsal economics: the original desire of the
company for the puppeteers to be drawn from the company of learning disabled actors proved
impossible. When working on the show, Blind Summitt engaged in a training programme with
the actors, and it soon became apparent that the time needed to train to be a Bunraku pup-
peteer was in excess of the actors’ –indeed most actors’ –capabilities and would not have
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allowed them time to make the play. The show’s comic energy, that rough “up against the wall”
quality it possesses, is derived in part from the exigencies of having to make a show when one’s
original plan has collapsed. The endless self-reflexivity is built into the texture of the show
due to the creative process which allows for the rich inter-subjective aesthetic experience that
the show becomes: the interruptive, bawdy interplay between very different minds, crafts and
desires. As Pettitt-Wade acknowledges, the company’s work is not “disabled-led” but rather
collaborative (“Interview”). The process of making the show was a response to a series of very
practical problems: How do we link the scenes together? (Answer: bring in the director.) What
does Martin do if he is not operating the puppet’s feet? (Answer: we need a stage manager.)
What is the relationship between the director and the stage manager? (Answer: difficult, hier-
archical.) This is not to suggest that Meet Fred is somehow “accidental” in its aesthetics; more
that the company are alert to the possibility of creating meaning within the contingency. What
the company profess to look for is “an edge to the work that is the opposite of safe or worthy”
(Pettitt-Wade “Interview”).
This, I argue, is productive aesthetic terrain and also supports –in material form –Margrit
Shildrick’s assertion that the appearance of disability highlights the profound interconnected-
ness of all identity: that disabled bodies disrupt “the putative norm of the autonomous subject”
(179). Indeed, the injunction to make a show is to ask the question, what kind of a show is this?
It is also to ask, what is my relationship to you? How might we make something out of that
relationship that is neither you nor me, but represents something else, some other third thing: a
material response to Quayson’s idea of “hermeneutical impasse” that is disability (52). Arguably,
performance –as opposed to political advocacy –is the primary place where meaningful change
can occur in one’s perception. This is because performance, as David George notes, “offers a
rediscovery of the now…rediscovery that all knowledge exists on the threshold of and in the
interaction between subject and object” (25). This is felt deeply in the relationship between the
puppeteers and the puppet. At the beginning of the play, as Fred gradually and fearfully becomes
self-aware, the interaction between subject and object becomes so blurred as to be illusory. The
emotional energy invested in the puppet makes him live.
Vulnerability as complicity
The self-reflexive impulse of the show can also be viewed through the lens of philosopher
Bruce Baugh’s notion of authenticity, which is located not in the body of the performer, or
in the truth of the representation. It is located rather in the artifice of the work itself. For
Baugh, “works of art have a ‘world’ that they can make ‘their own’ by revealing it in a singular
manner and […] it is in this that artistic authority consists” (479). Art does more than simply
represent: it transforms the spectator. It does so paradoxically, not by the intended transmission
of a “message” but conversely by suspending the need for such a definitive outcome. Meet Fred
is authentic because it is a “made thing”, something that is intentionally willed into existence.
It is precisely this intention that allows it to be perceived as art. The show also defined its own
world: it created an opportunity for a new space to emerge outside existing social constructions.
Baugh argues that artworks transform our experience when we “adopt what we take to be
the work’s organizing principle, and allow it to order our experience” (480). This distinction
between our own ends and the ends of the work is crucial. Only by relinquishing a wish for the
work to be “useable”, Baugh argues, can spectators truly allow themselves to be transformed
(481). The end of the work cannot be known by the makers or by the recipient, but only
experienced in the moment of the work’s reception. Baugh’s model of authenticity offers con-
siderable theoretical insight. Baugh argues that the audience must “strive to meet” the “demands
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of the work”, allowing those demands to govern them during the course of the work (481).
This highlights a primary issue in the formulation of appropriate critical frameworks: because
learning disability is such a contested and unstable category, theatre has a role to play, not just
in exploring identity but in ensuring that audiences are implicated in the telling. This is vital because
disability is not a “disabled person’s problem”: it is, ideally, a shared contemplation about human
difference. Disability implicates everyone and this is a formal question as much as an ethical one.
The moment of “not seeing” the disability (in two of the actors) can be read as a failure of per-
ception, leading to an erroneous judgement (about how much disability was in the show) but
it begs the question, what was there to see? When disability is seen, what exactly is there to see?
And if it is missed, what is it that is missing? Justice is perhaps a commitment to seeing –and
not seeing –in all its complexity, to look beyond the surface of what one already knows, or has
been taught to know. The show demands self-reflexivity by its audience.
Such questions of metafictional device and self-reflexivity, then, are not only relevant for
aesthetic reasons: in laying bare the device, so to speak, I argue that the play invites the spectator
to become critically aware, not just of the story and its themes, but of her own complicity. Any
singular, and thus reductive, meaning of vulnerability is ruptured by the constant interaction
between Fred and his co-performers and the audience. A normative reading (or performing)
of vulnerability would single out Fred –or Gareth John –as the “vulnerable one”, different in
essence from the powerful director, or indeed the autonomous spectators. Such a reading would
be wholly in keeping with normative assumptions that seek to close down a nuanced engage-
ment with vulnerability. Meet Fred circumvents this model in several ways. The most obvious
way this happens is the tendency for both Fred and Martin to talk back. At the end of the play, it
is not Ben the director, but Martin, who is left standing. Despite the director’s injunction that he
is not good enough to be a puppeteer, he ends the show as one. The message is clear, as Martin
states: “Fuck the director!”
The play experiments with its own sense of imminent collapse. Alan Read comments that:
[w]‌hen something goes wrong in the theatrical fiction, a corpse here, a collapse there,
it rarely forces cancellation but an increased level of attention and participation from
the audience. (53–54)
This fact is something that corresponds with Meet Fred, where, not failure exactly, but accidents
and contradictions –a sense of broad chaos –certainly contribute to the work’s complexity.
A poetics of vulnerability might recognise, but not privilege, mastery of technique or per-
fection. If ineptitude, forgetfulness or lack of finesse are aesthetic qualities that increase audi-
ence attention, then these should be examined, developed, even celebrated. It is a strength
of the show that the form allows highly virtuosic puppetry to stand side by side with non-
virtuosic performance, with no loss of aesthetic cohesion. It is as if each performer has found an
optimum place on a shared stage. The work encourages the spectator into a series of allusions
and metaphors. By distancing one from the subject of disability, the play, ironically, brings into
sharp focus the moral imperative of disabilty –how to live with and to support others.
A further component of complicity lies in the constant laughter that the show produces.
In the shared mirth, embarrassment and absurdity, the audience is always present as an active,
vocal soundtrack. There were times when I laughed because I wasn’t sure if I was witnessing
abuse of a stage manager by an irate director.Yet this merely adds to the sense of complicity: by
remaining seated, by accepting the safety of the fiction, by laughing awkwardly, I still remained
alert to the possibility that things might get out of hand: a walkout by the actors; a complaint
by an audience member. Perhaps this is related to the residue of feeling that at some level the
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learning disabled performer does not consciously know that he is acting, that this verbal abuse
may be being experienced as authentic pain. It is a measure of Gareth John’s skill that there was
a moment when he continued to beat himself saying “Stupid! Stupid!” that I genuinely feared
he was suffering. I think that this is what makes Meet Fred so powerful: that the themes of vul-
nerability are presented through the lens of broad comedy: in essence, a fool show.
Vulnerability as structural support

Puppets, of course, are surrogate objects. Fred is a puppet who passes for a person; a very par-
ticular type of person: one who requires three puppet support workers, which he risks losing,
along with his Puppet Living Allowance, if he refuses to take a job he doesn’t want: that of a
children’s entertainer. This is all due to the unpleasant vagaries of the DWP: the Department
for Work and Puppets. The play demonstrates that support is a shifting currency. Support
can be given freely; it can also be bought, at a cost. And it can be taken away. This need for
support makes Fred vulnerable. It also makes him human. Heinrich von Kleist’s essay, “On
the Marionette Theatre” (1810), is a short, enigmatic work that takes the form of a story: a
meeting between the author, von Kleist, and “an old friend” who is a “principal dancer in the
local theatre […] enjoying immense popularity” yet fascinated by the more commercial puppet
shows in the marketplace (1). The friend claims that he is in awe of the “mute gestures of these
puppets” and that “any dancer who wished to perfect his art could learn a lot from them” (1).
This sly essay turns accepted notions of virtuosity on its head: puppets have the “proportion,
flexibility, lightness…all to a higher degree” (3); they are “never guilty of affectation”; and “grace
appears most purely in that human form which has no consciousness or an infinite conscious-
ness.That is, in a puppet or a God” (5).That which puppets offer –that human actors cannot –is
performance free from the strictures of the self. The puppet, incapable of affectation, is a mirror
image of one idea –or perhaps misconception –of the learning disabled actor.
This is exactly the point made by Nicholas Ridout, in his reading of Kleist: that “the self-
consciousness that follows ‘the fall’, involves […] representation” (17). The puppet shares with
the learning disabled performer an unrepresented or unmediated presence: in other words,
he is the blank slate on which to project. What Kleist’s argument overlooks is that “puppets
only achieve their transcendence of human gracelessness by means of human labour” (26). The
mechanics of puppetry belie the myth of smooth, untroubled autonomous creativity. It is not
that the puppet is so radically different. What is so shocking is that the puppet and the human
actor share the same fate: continual nightly repetition supported via a network of levers that
remain hidden due to the willing suspension, not of belief, but of economic reality. Perhaps,
then, it is of more than passing significance that Martin, the only learning disabled performer in
the show, has the role of Stage Manager, or to put it more literally, Props Master, or metaphor-
ically: Master of Support. Because this is what vulnerability does: it reavows structural support.
What the show does, very effectively, is mediate these aesthetic questions back into the pol-
itical realm. As Jack, the sinister Jobseeker’s officer, says (played by Newnham):
Jack: If you do not take a job you will lose one of your puppeteers.
Fre d: What? You…you can do that?
Jack: Of course I can. In the climate we live in something has to give, and you, and your
three puppeteers here are a luxury.
Fre d: But Jack, you can’t just…But, do you not see, if you take away one of my puppeteers
it makes it even harder for me to get about, even harder to get a job.
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This problem is not limited to the “real world”. As the following dialogue makes clear, Fred, like
his learning disabled human shadow, Martin, doesn’t get paid for his nightly labour.
Director : It’s not that we don’t want to pay you. It’s just, well, it’s better for you if we
don’t…it’s complicated.
Fre d: What? Stop saying it’s complicated…how can it be complicated?
Director : OK fine! Look, if we paid you what we should be paying you, you’d have to
sign off your PLA, which is fine because you’re getting paid yeah, but once the tour is
over you’ll have to go back to DWP…
In both these excerpts Meet Fred opens up questions about what constitutes support or indeed
justice, but also about what constitutes a play, and what support a play needs. When I saw
the show in 2017, the actor Gareth John played Martin. The “real” Martin, Martin Vick, who
devised the show, died in December 2016, just before it went on tour. In the universe of Meet
Fred, a play is something that continually opens itself up to reveal its own contingency, its
contradiction, its capacity to collapse, its own vulnerability.
The presence of the puppet as non-human transitional object in relation to disabilty is a
burgeoning field and one around which questions of authenticity, representaiton and con-
nectedness cohere in new ways. As Laura Purcell-Gates argues, in her teaching practice she
encourages students to see the creative possibilites in puppets who are “flawed” in some way.
Rather than fix the flaw, she urges them “instead to explore how this particular puppet wants to
move, and suggest that a puppet’s perceived flaws often become a defining feature of the puppet’s
emerging life and movement” (Purcell-Gates and Fisher 368).This chimes with the invigorating
workshops and debates at the Broken Puppet Symposium in April 2018. Of particular note was
the tendancy for the presence of puppets, for a time, to empty disabilty of meaning: for puppets
to create a space outside of literal representation and rather to explore new associative worlds,
which in turn allow us to return to the literal world with heightened awareness. As Purcell-
Gates says, such puppets seem to “be truer representations of how we viewed ourselves than had
we chosen to use figurative puppets designed to mimic human bodies” (364–365). The point
was reinforced by Petra Kuppers in her keynote: “Puppet work is magic work: it transforms
the world into forms of abstraction, and objects take on their own power.” If the presence of
disabilty can often feel like an impasse –being both real and constructed, being both pain and
affirmation –the transitional puppet object has a powerful role to play in traversfing this dead-
lock. It is not I; or we; or it: it is itself a beautiful third thing that channels meaning beyond the
binary of the privileged or the abject.
The crucial point is that these questions of form are as much moral as they are aesthetic.
They are, in the context of Meet Fred, questions of moral personhood. As Licia Carlson explains,
learning disabled people have often been deployed in philosophy as marginal test cases (them)
to articulate something about the majority (us), which animalise and de-humanise subjects,
particularly as “they” are automatically conveyed as experiencing a diminished quality of life
(544). By employing the tabula rasa of the puppet, ironically, Meet Fred gives face to the myriad
ways that learning disabilty is felt and experienced, but also disavowed and marginalised. Fred
is the empty centre around which all the problems of personhood and knowing subjectiveness
revolve in the play.
I have made several provocations in this chapter: that vulnerability is an interruptive value,
both socially (because it upsets the myth of the autonomous self) and aesthetically (since it
deploys reflexivity); that it invites spectators’ complicity; and that vulnerability reavows structural
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support. After a show full of props, I am struck by the irony of Andrew Sofor’s remark, “A prop
is something an object becomes rather than something an object is” (quoted in Jackson 80).
Thinking through both learning disability and puppetry as a becoming rather than a fixed pos-
ition, generates new insights. Fred, the prop who comes to life, who spends the show trying to
create both a play and an identity, troubles the binary of the human/non-human. Such props
become a different type of actor, undermining the fixedness of who is and who is not a per-
former, of who should or should not be seen onstage; and the support required to put him there.
Works cited
Baugh, Bruce. “Authenticity Revisited”. The Journal of Aesthetics and Art Criticism, vol. 46, no. 4, 1988, pp.
477–487.
Bérubé, Michael. The Secret Life of Stories: From Don Quixote to Harry Potter, How Understanding Intellectual
Disability Transforms the Way We Read. New York: New York University Press, 2018.
Butler, Judith. Frames of War: When is Life Grievable? London: Verso, 2009.
Carlson, Licia. “Feminist Approaches to Cognitive Disability”. Philosophy Compass, vol. 11, no. 10, 2016,
pp. 541–553.
George, David E. R. “Performance Epistemology”. Performance Research, vol.1, no. 1, 1996, p. 25.
Gilson, Erinn. The Ethics ofVulnerability: A Feminist Analysis of Social life and Practice. London: Routledge,  2013.
Hargrave, Matt. Theatres of Learning Disability: Good, Bad or Plain Ugly? London: Palgrave, 2015.
Jackson, S. Social Works: Performing Art, Supporting Publics. London: Routledge, 2011.
Kleist, Heinrich von. “On the Marionette Theatre”, trans. Idris Parry www.southerncrossreview.org/9/
kleist.htm. Accessed 12 October 2012.
Kuppers, Petra. “Keynote Address” at Broken Puppet 2 Symposium: Puppety and Disability Performance.
Bath Spa University, 14–15 April 2018.
McVeigh, T. “Sally Phillips’s Film on Down’s Is ‘Unhelpful’ for Families, Warns Antenatal Specialist”.
The Observer, 2 October 2016. www.theguardian.com/society/2016/oct/01/downs-syndrome-
screening-jane--fisher-expert-criticises-sally-phillips-bbc-documentary.
Orwell, George. Shooting an Elephant and Other Essays. London: Secker & Warburg, 1951.
Pettitt-Wade, Ben. “Email Correspondence”. 2 October 2018.
———. “Interview”. 4 October  2018.
Purcell-Gates, L., and Fisher, E. (2017). “Puppetry as Reinforcement or Rupture of Cultural Perceptions
of the Disabled Body”. Research in Drama Education: The Journal of Applied Theatre and Performance, vol.
22, no. 3, pp. 363–372.
Quayson, Ato. Aesthetic Nervousness: Disability and the Crisis of Representation. New York: Columbia
Read, Alan. Theatre and Everyday Life: An Ethics of Performance. London: Routledge, 1995.
Ridout, Nicholas. Stage Fright, Animals and Other Theatrical Problems. Cambridge: Cambridge University
Press, 2006.
Shildrick, Margrit. Dangerous Discourses of Disability, Subjectivity and Sexuality. London: Palgrave, 2009.
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PART V
Life writing
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26
SEX, DEATH, AND
THE WELFARE CHECK
Rhythms of disability and sexuality in David
Wojnarowicz’s Close to the Knives
Leon J. Hilton
In the years since its publication Close to the Knives: A Memoir of Disintegration (1991) has become
one of the most indelible texts of experimental life writing as mode of existential protest to have
been produced from the devastation of the first decade of the AIDS epidemic.The book collects
a series of essays that Wojnarowicz composed over almost a decade of work. Close to the Knives
chafes against the genre conventions and expectations that have come to define the memoir
as a literary form.1 It resists narrative coherence in favor of experimental literary techniques
that recall the disjointed, hallucinatory visual style that so characterizes Wojnarowicz’s work as
a painter, photographer, and experimental filmmaker that first brought him attention in the
early 1980s in the vibrant underground art scene that sprung up in the derelict tenements and
storefronts of downtown Manhattan. In formal counterpoint with the collage and cut-up com-
position techniques he put to such canny use in his work as a visual artist of uncommonly radi-
ance,Wojnarowicz’s writing is rough-hewn and raw, jumping rapidly between half-remembered
scenes of “different things that sift back in some kind of tidal motion” (5). Lend a rage-fueled
voice to the slow-moving emergency that Wojnarowicz witnessed unfold across multiple scales
and registers –from the churning, molecular depths of his own body to the Grand Guignol
pageantry through which cultural fantasies about contagion, sex, death, and (auto)immunity
play themselves out –the explosive energy of Wojnarowicz’s language offers especially rich
terrain for disability theory: it is a book that seems lit up from within by a particularly fierce
investment in what Ato Quayson calls the “aesthetic nervousness” that the literary represen-
tation of disability can spark, the standard protocols of narrative into crisis and “evoking the
boundary between the real and the metaphysical or otherworldly” (22). Studded with piercing
hidden details that illuminate how HIV/AIDS has been ambivalently situated in relationship
to the complex and historically contingent meaning of “disability” itself, Close to the Knives
offers a densely layered, at times dizzying constellation of narrative images –flashpoints of
memory that are thick with the sensations of a body being overtaken by the churning currents
of a historical catastrophe. In one of the earliest reviews of Close to the Knives, the literary critic
Dianne Chislholm noted that the book “eroticizes and politicizes the abused and diseased body,”
suggesting that Wojnarowicz’s memoir is in fact an autothenography: a chronicle of the writer’s
refusal to reconcile himself with the communal fear and grief that surrounds him and the death
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that awaits him (83). Upon its publication, one of the book’s sentences quickly became a touch-
stone for the AIDS activist movement: “When I was told that I’d contracted this virus it didn’t
take me long to realize that I’d contracted a diseased society as well” (114).
It is all the more notable that the brief, exhilarating chapter that opens Close to the Knives –
titled “Self-Portrait in Twenty-Three Rounds” –was in fact written in the years before AIDS
had expanded into a generational crisis that would claim the lives of so many of Wojnarowicz’s
friends, first appearing in print some four years before the author learned of his own infection
with HIV. (Wojnarowicz learned he was HIV positive at the same time that he was diagnosed
with full-blown AIDS in the Spring of 1988; see Carr 391). “Self-Portrait in Twenty-Three
Rounds” first appeared in print in 1984, in the second issue of the experimental fiction maga-
zine Between C & D edited by the downtown writers Catherine Texier and Joel Rose. According
to Wojnarowicz’s biographer Cynthia Carr, Between C & D was “actually a fanfold computer
printout sealed in a ziplock bag with handmade East Village art on each cover” (252). “Self-
Portrait” is a fragmentary collage of narrative snapshots drawn from Wojnarowicz’s fractious
childhood and adolescent exploits as a hustler eking out a threadbare survival in stagflation-
ravaged New York.
The gut-punch of “Self-Portrait” as the opening salvo of Close to the Knives thus offers a time
capsule of sorts, granting us access to a pre-AIDS world that is nonetheless eclipsed retroactively
by the health crisis that would claim its author’s life less than two decades later. “Self-Portrait
in Twenty-Three Rounds” thus functions as a prelude or preamble that introduces the book’s
subsequent attunement to the “disintegration” of the body and indeed of society under the
sign of AIDS that would become Wojnarowicz’s core image. Indeed, this chapter argues that
“Self-Portrait in Twenty-Three Rounds” allows us to read Close to the Knives as a text that
occupies a common horizon between queer theory and disability studies. While it is by now
well-recognized how profoundly the furious outpouring of activist, artistic, and intellectual
energy generated by the AIDS crisis shaped the development of queer theory, the epidemic’s
significance to the emergence of the academic field of disability studies has been less widely
acknowledged. Following parallel and often contrapuntal theoretical itineraries, queer theory
and disability studies have each drawn lessons from the mournful, devasted militancy of the early
AIDS years: indeed, as Robert McRuer and Anna Mollow have noted, the theoretical apertures
of queer theory and disability studies have most overtly converged around the literature and
theory of sexuality produced in the wake of the AIDS emergency (3).
In order to position Close to the Knives at a common point of origin for queer theory and
disability studies, it is helpful to consider Wojnarowicz’s work within the context of theoret-
ical traditions that have been concerned with understanding the body as it is implicated in
history. I draw from these traditions in the discussion that follows by way of brief recourse to
writing by Karl Marx, Walter Benjamin, and Cathy J. Cohen. Most of all, this chapter addresses
the relationship between historical experience and material embodiment by drawing from the
methodological resources of rhythmanalysis, a concept originally developed by the French soci-
ologist Henri Lefebvre. In a series of essays from the 1980s, Lefebvre outlined a new approach
to the sociological analysis of everyday experience under advanced capitalism by attending to
its rhythmic dimensions. Lefebvre proposed that what we come to experience as the “everyday”
is itself shaped by “a conflict between great indestructible rhythms”: the “natural” rhythms
of the biological body and ecological systems and the “artificial” or mechanical rhythms that
emerge to “the processes imposed by the socioeconomic organization of production, con-
sumption, circulation, and habitat” (82). As a method, rhythmanalysis is defined by its capacity
to untangle the relationship between the measurable, quantitative regulation of time as it is
shaped by the inexorable capitalist production and the unpredictable, fluid, and unregulatable
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Sex, death, and the welfare check
temporality of the bodies whose living labor becomes the raw material for the generation of
profit. Lefebvre’s account of the everyday as produced by the perpetual clashing of contra-
dictory rhythms is strikingly resonant with the relentlessly propulsive, often hallucinatory style
that defined Wojnarowicz’s work as a painter, photographer, collage-maker, performance artist,
punk musician, and writer. Lacking formal education or artistic training, he started to make
photo-collages and wild-colored paintings in the abandoned warehouses that lined the Chelsea
Piers and the East River. His earliest completed series of artworks consisted of twenty-four
black-and-white photographs of the artist posing in various New York City locations, wearing
a cutout mask of the French Symbolist poet Arthur Rimbaud. The photographs depict isolated,
almost mournful figures bearing silent witness to the fissures in the urban fabric that began to
appear as the booming prosperity of the postwar decades began to wane.
In eroticizing the wayward and derelict forms of selfhood and sociality that are forged along
the seams and margins that formed the wake of these transformations, Close to the Knives reveals
how the conventions of life writing –of self-narration and representation –come under pressure
when faced with the vulnerable and degraded materiality of the body “under the sign of AIDS”
(Duttman 6–7). While “Self-Portrait” prefigures the rage and terror of the AIDS emergency,
it is primarily an “X-Ray vision” of the alternately lush and violent sexual underworlds that
sprang up in the urban wreckage created by the economic crises of the 1970s: it describes in
sometimes harrowing detail the sensory onslaught that Wojnarowicz discovered in the zones of
cross-class, cross-racial queer contact that blossomed along the West Side piers and in the pre-
gentrified Times Square with the decimation of urban infrastructures during a period when
capital was rapidly in retreat from the urban core. Indeed, I will suggest that the book also
provides a visceral snapshot of a moment that represented a crucial historical juncture in both
the political regulation of sexuality and the meaning of disability. Insofar as both disability and
sexuality are historically contingent categories that obtain their coherence in relation to the
social organization of production,Wojnarowicz offers us a glimpse into an acute period of crisis
and transition in the structure of capitalism itself that started to take shape around 1970, just as
the ideological coherence of the postwar liberal welfare state was beginning to fray. He depicts
a world of poverty and criminality, describing explicit public and semi-public erotic encounters
and sudden eruptions of violence, seeking to transform writing into a weapon that might grant
access to a place beyond what he will come to call the Preinvented World.Wojnarowicz invokes
this term frequently: so often that it nearly becomes a refrain –a rhythmic structure in itself.
The Preinvented World is Wojnarowicz’s name for the crushing, moralizing conformity and
prefabricated sentimentality of a postwar consumer society that (by the time Wojnarowicz was
coming of age) had begun destroying itself from within. The Preinvented World is
A place where by virtue of having been born centuries late one is denied access to
earth or space, choice or movement. The bought up world; the owned world. The
world of coded sounds: the world of language, the world of lies. The packaged world;
the world of speed in metallic motion. The Other World where I’ve always felt like
an alien. (87–88)
The Preinvented World can be read as dialectical image, in the sense elaborated by Walter
Benjamin: a snapshot that constellates and crystallizes the contradictory elements of a precise
historical/economic formation and allows it to snap into view “suddenly, in a flash” (473).
Benjamin imagined capitalism itself as inducing us into a sort of dream-filled sleep, lulled by
the deceptive enchantments of the commodity form that increasingly comes to define the
material contours of social reality and everyday experience. He proposed that dialectical images
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are those images that have the potential to awaken us into historical consciousness. Indeed, for
Benjamin, the “realization of dream elements, in the course of waking up, is the paradigm of
dialectical thinking” (13). Wojnarowicz, too, found it necessary to push the conventions of life
writing beyond realism by conjuring in words and images the sense of being suspended in the
state between sleeping and waking. This interstitial mode of consciousness is compared to the
geological rhythms of tidal motion: “Like the ocean’s movement where every seventh wave is
higher and more furious than the others, small pieces of last night’s sleep return in the eddy and
flow of the day’s turning” (27).
The 1970s were marked by a series of financial crises set off by the accumulated forces of the
staggering costs of the ongoing Vietnam War, the rapid decline in Fordist manufacturing under
the pressures of foreign competition, the failure of the Bretton Wood accords and the subse-
quent push for the deregulation of financial markets, and the 1973 oil embargo. With inflation
increasing inexorably while real wages declined, the US economy was seized by the roiling eco-
nomic uncertainty whose effects were particularly devastating for New York City by the mid-
1970s. As the white middle classes abandoned the city for the suburbs in the late 1960s and early
1970s, the resources needed to sustain the physical infrastructure of the city, not to mention
its social welfare net, were increasingly decimated. The Rimbaud in New York series is just one
example of the way the severe economic contractions of this period shaped Wojnarowicz’s lit-
erary and artistic development. He came to artistic consciousness in stagflation-era New York,
and his entire body of work is saturated with the scenes of social abandonment and devasta-
tion that he witnessed during this period. In a trenchant discussion of Wojnarowicz’s Waterfront
Journals (written between 1978 and 1980), Andrew Strombeck observes that these vivid, frag-
mentary accounts of the author’s erotic escapades among the city’s burgeoning underclass bear
witness to the tectonic shifts in the global economy that marked the period of their compos-
ition. To read these journals, Strombeck writes,
is to experience simultaneously the withdrawal of the welfare state, the impetus toward
self-creation necessitated by post-Fordist work regimes, and the momentary falling
away of Fordist discipline. These short monologues meditate on the possibilities of life
in the ruined city, in the cracks and fissures left when capital withdraws its energies.
What alternative erotic, social, and aesthetic arrangements and possibilities emerge in the
abandoned spaces carved out by the withdrawn energies of capital? At one point in the book,
he describes the Preinvented World –with its “calendar turnings” –as the place where “I
sometimes lose my footing” (87). Losing his footing, Wojnarowicz could be said to experience
what Lefebvre will describe as an arrhythmia: a sudden jump or syncope that interrupts the
mechanized, artificial rhythms of industrial production and postindustrial consumption (55).
In Wojnarowicz’s keen attention to the sheer sensory onslaught of the stagflation-ravaged
urban landscape, disability enters narrative figuration in a number of significant ways. Consider a
brief, arresting passage from “Self-Portrait,” in which Wojnarowicz recounts, in the vivid imme-
diacy of the present tense, a memory from his teenage hustling days:
in the horn and hardart’s there’s a table full of deaf mutes and they’re the loudest
people in the joint one of them seventy years old takes me to a nearby hotel once a
month when his disability check comes in and he has me lay down on my belly and
he dry humps me harder and harder and his dick is soft and banging against my ass
and his arm is mashing my little face up as he goes through his routine of pretending
to come and starts hollering the way only a deaf mute can holler like donkeys braying
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when snakes come around but somehow in the midst of all that I love him maybe it’s
the way he returns to his table of friends in the cafeteria a smile busted across his face
and I’m the one with the secret and twenty dollars in my pocket […] (7)
This frank, explicit depiction of the author’s monthly erotic transactions with a seventy-year-
old habitué of an all-night Times Square diner calls out for rhythmanalysis. How might the
ambiguous forms of social relation narrated in this raw and even troubling encounter –and the
larger historical forces that determines its contours –be teased out by attending to the bundle of
rhythms (natural and artificial, social and somatic) that saturate this scene? I would like to focus
on the way these sexual encounters are keyed to the cyclical temporality of the “monthly wel-
fare check.” The inclusion of this seemingly banal detail enables us to read how, in this passage,
what might be called the administrative time of the state wraps itself around the rhythms of
the body –and particularly the rhythmic processes that are felt with particular acuity upon and
within bodies that are debilitated and indeed disabled by the inexorable forms of extraction and
exploitation of capitalism as a mode of production and social reproduction. Rhythm, Lefebvre
writes, “appears as regulated time, governed by rational laws, but in contact with what is least
rational in the human being: the lived, the carnal, the body” (9). The reference to the monthly
disability check that facilitates the economic transaction of this sexual encounter signals the
calendric rhythms of the welfare state’s redistributive mechanism –itself an imitation or cipher
for the structured, “artificial” temporality imposed by the system of wage labor itself, with its
relentless abstractions and transmutations of work time into value. Rhythmanalysis is a critical
method that was developed to concretize such abstractions: to make time appear by exposing
and unravelling the processes by which labor becomes time. This passage narrativizes how the
time of the body is made to syncopate with the time of the state, the time of capitalist produc-
tion, and the time of artistic or literary expression –even as it prefigures his subsequent interest
in turning language itself into a “weapon” to combat the deadly hypocrisies of the Preinvented
World that would come to fruition in his later AIDS writing.
One thing that “disability” names is a form of social categorization that distinguishes
between persons who can and cannot sell their labor in exchange for a wage. This passage from
“Self-Portrait in Twenty-Three Rounds” is emblematic of the way Wojnarowicz depicts the
social erotics that gather beyond the margins of the wage labor system. The critical geographer
David Harvey has noted that embodiment itself must be understood according to the extent
to which capital itself “circulates, as it were, through the body of the laborer as variable capital
and thereby turns the laborer into a mere appendage of the circulation of capital itself ” (157).
Wojnarowicz and his sexual companion for the monthly hotel-room trysts share an experience
of marginalization from the exigencies of wage labor. The encounter gives a sense of the cyc-
lical rhythms that are at the margins of all of the ways in which the wage structure comes to
generate rhythmic effects that are felt within the body and spiral outward. The appearance of
the disability welfare check in this excerpt from “Self-Portrait” offers a striking, concrete detail
that helps to anchor the narrative historically, placing it in proximity to the conservative back-
lash against the expansion of social welfare that emerged in the midst of the economic crises in
the mid-1970s and intensified under the administration of President Ronald Reagan. Indeed,
the temporal structure imposed by the disability check that appears in Wojnarowicz’s narrative
account is in turn shaped by the complex history of social welfare programs designed for those
deemed too physically or mentally impaired to enter the labor market.The first federal program
to provide financial assistance to the disabled was created by the 1935 Social Security Act and
expanded with the establishment of Medicare and Medicaid programs as part of President
Lyndon B. Johnson’s Great Society initiatives in the mid-1960s. President Richard Nixon was
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the first to undertake efforts of welfare “reform” with the establishment of the Supplemental
Security Income (SSI) of 1974, which provided a guaranteed annual income for the poor and
disabled.2 It seems likely that the welfare check referenced by Wojnarowicz belongs to the SSI
program.
In her 1984 book, The Disabled State, an early key text in the emergence of disability studies
as a scholarly field, Deborah A. Stone described the pivotal role that the category of disability
plays within the postwar liberal welfare state. Published in the midst of escalating Reagan-era
attacks on welfare –and, interestingly, in the same year that “Self-Portrait in Twenty-Three
Rounds” first appeared in print –Stone’s argument demonstrates how “disability” came to be
defined as an administrative category, located at the interstice between the state and the market
and increasingly dependent upon the legitimating authority of medical experts (10–11). With
the rise of social welfare programs in the early twentieth century, attaining the designation of
disability came to function as a mechanism by which those deemed incapable of working to
support themselves gained access to public benefits.Yet as Stone suggests, the question of who
qualifies for social aid is inseparable from a more fundamental issue with the principles of redis-
tribution as such: the conflict “between work and need as the basis of claims on resources”
(12–13). As Stone observes,
The very notion of disability is fundamental to the welfare state; it is something like
a keystone that allows the other supporting structures of the welfare system and, in
some sense, the economy at large to remain in place. At the same time, the notion of
disability is highly problematic.The problem, in brief, is that we are asking the concept
of disability to perform a function it cannot possibly perform. We ask it to resolve the
issue of distributive justice. (12–13)
The conservative attacks on the welfare system that took hold in the late 1970s and 1980s with
the ascendency of the New Right took an aggressively antagonistic approach to the question of
distributive justice, one that sutured the conservative cultural politics of “family values” of the
resurgent Evangelical Right to neoliberal economic policies of deregulation, financialization,
and privatization.
The Reagan-era conservative rhetoric against welfare was racially coded, conjuring the vili-
fied figure of the Welfare Queen who took advantage of what was then perceived as overly
lax regulations of the welfare system. Cathy Cohen’s seminar essay “Punks, Bulldaggers, and
Welfare Queens” (1997) described the extent to which anxieties about social welfare programs
have tended to focus on regulating the errant and unruly sexuality imagined to belong to
poor African American women. Cohen’s essay called for a transformation in queer politics to
pursue a wider coalitional vision, one that would address “the nonnormative and marginal pos-
ition of punks, bulldaggers, and welfare queens” alongside the more recognizably identitarian
frameworks pursued by LGBT rights movements (438). Reading Wojnarowicz in tandem with
Cohen offers vivid insight into the way the racist moralizing through which the regulation
of black sexuality was justified is connected –via the concept of redistributive social welfare
made on the basis of need –to the definition of disability as an administrative category that
authorizes exemption from the need to work. Though Wojnarowicz does not give any indica-
tion of his companion’s racial identifications, reading Cohen’s essay alongside Wojnarowicz’s
account suggests how the appearance of the welfare check could be said to crystallize how
intersecting axes of embodiment (race, sexuality, disability) are positioned in relation to what
the queer theorist Elizabeth Freeman has described as chrononormativity –“the use of time to
organize individual human bodies toward maximum productivity” (3). Wojnarowicz’s account
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of the social and sexual worlds he inhabits suggests how the coalitional politics world-making
that Cohen’s essay calls for take shape in the shadowy zones beyond the routinized, “artificial”
rhythmic structures of conventional waged labor.
Yet it seems equally clear that Wojnarowicz does not seek to redeem the sexual encounter
that he narrates, or to dignify it by restoring it into a more palatable relational form. From the
brutal, almost dehumanizing description of his companion’s “hollering the way only a deaf mute
can holler like donkeys braying when snakes come around,” the language turns suddenly tender,
as the narrator reveals that “somehow in the midst of all that I love him.” Yet in tracing the
origins of this feeling Wojnarowicz calls up criminal intimacies that are formed in spaces where
illicit and even “criminal intimacies” are the very lineaments that saturate the everyday: “maybe
it’s the way he returns to his table of friends in the cafeteria a smile busted across his face and
I’m the one with the secret and twenty dollars in my pocket.” Here a structure of exchange
is grafted onto a structure of knowledge (the smile, the secret twenty-dollar bill), producing
hidden and perhaps illicit forms of pleasure. From this perspective, the most subversive aspect of
this excerpt may not in fact be the graphic depiction of a commercial sexual encounter but in
showing experiences of erotic and other forms of relational pleasure; what the disability activist
and theorist Sunaura Taylor has called “the right not to work.” For Taylor, the right not to work
is an especially important ideal that disability politics makes available as a point of solidarity and
alliance with other terrains of collective struggle, since it emerges alongside “a complex system
of historical, cultural, and geographical discrimination that has evolved inside and alongside cap-
italism and that we now simply regard (and too frequently dismiss) as disability.”
Wojnarowicz’s writing grapples with the question of how language might capture the
heightened, intensified experiences of bodily sensation that blur conventional distinctions
between pain and pleasure; enjoyment and disgust; the individual body and the social collective.
“Each painting, film, sculpture or page of writing I make represents to me a particular moment
in the history of my body on this planet, in America,” he writes in a later chapter, which fur-
ther records the historical lineaments of these moments by following the rhythmic itineraries of
bodies convulsed by a desire that seems to exceed capture by any individual body (149). Echoing
Lefebvre’s proposal that desire “has a rhythm; it is a rhythm” (35, italics added), Wojnarowicz
makes brilliant use of the rhythmic properties of language to evoke its bodily counterpart: in the
rapid-fire, sparsely punctuated sentences that run onto multiple pages –its two sections separated
by a single section break –one hears the industrial staccato of the second-hand typewriter on
which “Self-Portrait in Twenty-Three Rounds” was written; the title of the chapter itself evokes
the automated battery of a machine-gun.The writing retains a sense of the material conditions of
its production, transmitting to the reader something of the urgent and compulsive bodily gestures
that the authorial consciousness needed to generate in order to write it.
This aspect of Wojnarowicz’s writing can be read in relation to a number of currents within
late twentieth-century avant-garde and experimental literature: indebted to various strands of
surrealism, pop, and Beat-influenced aesthetic tendencies (the later, trippier work of William
Burroughs is a clear influence, for example). Wojnarowicz also forged a mode of experimental
life writing that combined brutal realism and erotic debasement in ways that are resonant with
the work of his contemporaries such as Kathy Acker, Dennis Cooper, and the raw, confessional
writers who came to be associated with the New Narrative literary scene. Placing Wojnarowicz
in this tradition clarifies how Close to the Knives is also indebted to a particular set of gay literary
representational conventions that have been concerned with articulating homosexuality as an
outlawed sexuality (“Homosexuality is first of all a criminal category,” the radical gay liberationist
Guy Hocquenghem wrote in his 1978 book, Homosexual Desire (67)). Indeed, Wojanorwicz’s
tenderly rendered passage here draws upon the representational tropes of prostitution that are
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familiar from this tradition. It is a passage that might be read as an account of Wojnarowicz’s
transforming his own body into a commodity in an underground sexual marketplace.Yet it also
is too complex to be read as a scene of sexual exploitation conditioned purely by economic
distress.Wojnarowicz and his older client are mutually positioned outside of chrononormativity,
and the use of a disability welfare check to pay for sex might also be read as an act of subter-
fuge against the administrative temporality of the state. Wojnarowicz’s bracing use of present
tense suspends us in an indeterminate, perpetual “now” –an ambiguous temporality that resists
being pinned to a singular event, a localizable then and there, and conveys instead a sense of
routinized habits tied to the monthly distribution of the welfare check that produces its own
“secret” or hidden polyrhthmic and eurythmic counterpoint to the chrononormative organiza-
tion of social time.“Public sex situations are not Dionysian and uncontrolled,” as Samuel Delany
remarks in his vivid account of the underground sexual economies that flourished in the pre-
gentrified Times Square that Wojnarowicz’s opening chapter describes, “but are rather some of
the most highly socialized and conventionalized behavior human beings can take part in” (158).
Close to the Knives makes brilliant use of the rhythmic qualities that bind his language to the
interiorized erotic thrum of the body to evoke the sense of a self, and a life, that materializes
along the most precarious cracks of the Preinvented World.
Lefebvre writes that the rhythmanalyst “must arrive at the concrete through experience” (31).
The use of the term concrete is particularly interesting, in light of the fact that he also defines
rhythm itself as the “concrete modalities of social time” (78). In “Self-Portrait in Twenty-Three
Rounds,” the scene of the Times Square hotel room contains “concrete” rhythmic convulsions
of bodily pleasure and danger as they are shaped everyday ordinary redistributive mechanisms
of the welfare state and its grinding bureaucratic temporalities. Roland Barthes suggests that the
description of seemingly minor or trivial details in works of literary realism seemed to serve
as a way of anchoring the work in “concrete reality” and aligning it with historical object-
ivity, noting that “in the ideology of our time, obsessive reference to the ‘concrete’…is always
brandished like a weapon against meaning, as if, by some statutory exclusion, what is alive
cannot signify –and vice versa” (146). What, we might ask, can be done with the Preinvented
World as a dialectical image that emerges from the particular crisis point in capitalism’s devel-
opment, as the high tide of Fordism and social welfare liberalism began its brutal retreat? Some
possible answers to this question might be found in some of the subsequent chapters in Close
to the Knives in which the historical catastrophe of AIDS moves to the center of the book’s
concerns. It is the Preinvented World, which he also calls the Other World, that Wojnarowicz
likens to the lethal force of the HIV virus: “The Other World gets into one’s bloodstream with
the invisibility of a lover. It slowly takes the shape of the cells and their growth, internalized until
it becomes an extension of the body” (88). Wojnarowicz’s images emerge from a sense of what
he calls a “paranoid reality” (37): invoking the eroticized gay male body invaded from without,
he presents a perfectly inverted image to the paranoid logic that equated the infectiousness of
AIDS with the subjects and communities most vulnerable to its devastations.
Yet Wojnarowicz’s work pervasively resists the solidity of a coherent or consistent social
“identity” by interrogating the living, breathing, excessive material ground upon which identity
stakes its claim to a place in the order of representation –which is to say, of the body itself as
the boundary between the self and the world. His work is among the most powerful examples
of the way life writing under the sign of AIDS compelled writers to seek ways beyond the
realist opposition between reality and meaning. Learning of his own infection with the HIV
virus, Wojnarowicz obsessively scrutinizes the transformations that seize hold of his body and
deform his fear into rage. He writes of carrying an anger that “begins with the earliest mem-
ories, when sexuality first stirs beneath one’s skin in an organized social structure that would kill
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you spiritually or physically every chance it has” (104). By the end of the book, in a passage of
extraordinary concision and economy of expression, Wojnarowicz describes the transformation
of his own body into a weapon: “realizing I have nothing left to lose in my actions I let my
hands become weapons, my teeth become weapons, every bone and muscle and fiber and ounce
of blood become weapons, and I feel prepared for the rest of my life” (81).
The final chapters of Close the Knives are filled with devastating accounts of Wojnarowicz’s
experiences watching his friends die from AIDS –experiences that inevitably shape his dawning
awareness of his own mortality and impending death following his AIDS diagnosis in 1988.The
Preinvented World has become a slaughterhouse: “I feel more vulnerable, like I’m standing on
a conveyer belt leading into an enormous killing machine” (167). Faced with the brutal prox-
imity of his own mortality, Wojnarowicz never assents to the force of a negativity that would
refuse or give up on the social. Instead, in this vision, we glimpse what Felix Guattari described,
in a 1988 essay, as Wojnarowicz’s “revolt against death and the deadly passivity with which
society deals with this phenomenon [of AIDS]” (quoted in Carr 413). At points his writing
seems to contemplate the immanence of his own death with an almost serene detachment,
with an understanding of death as rather “I just tend to see it as some final moment where all
the energy of my body will disperse” (82). Indeed, if I have been suggesting that the methods
of rhythmanalysis allow us to revisit Close to the Knives as emerging from a shared historical
horizon for queer theory and disability studies, death would seem to be the ultimate arrhythmia
around which these two critical apertures must converge: death represents the final, implacable,
and concrete horizon that AIDS life writing is bound to confront as a problem of conceptual-
ization and representation. In a later chapter of Close to the Knives, Wojnarowicz writes of being
able to see “the slow motion approach of the unveiling of our order and disorder” (68). This
“unveiling,” he imagines, is prompted by a spark that flares outward and expands to produce “an
enlargement of a minute vision” (69) around an ungraspable yet palpably felt center:
The center is something outside of what we know as visual, more a sensation: a huge
fat clockwork of civilizations; the whole onward rush of the world as we know it; all
the walking swastikas yap-yapping cartoon video death language; a malfunctioning
cannonball filled with bone an gristle and gearwheels and knives and bullets and
animals rotting with skeletal remains and pistons and smokestacks pump-pumping
cinders and lightning and shreds of flesh, spewing language and motions and shit and
entrails in its wake. (69)
In striking counterpoint to Walter Benjamin’s Angel of History, surveying the wreckage piled
up by way of the storm of historical “progress,” Wojnarowicz conjures his fearsome vision
of history as an industrial grindhouse of bodily disintegration as a “malfunctioning cannon-
ball”: his X-Ray vision is not oriented around a the messianic promise of redemption, but he
writes instead of a “swirling in every direction simultaneously so that it’s neither going forward
nor backward, but from side to side” (69). Revisiting Wojnarowicz’s visionary, furious approach
to life writing as a revolt against death holds open the possibility –indeed, the necessity –of
giving voice to those arrhythmic forms of sociality and desire that manage to emerge beyond
the chrononormative temporalities of the Preinvented World.
Notes
1 This discussion of Wojnarowicz’s Close to the Knives builds upon accounts of the complex historical
development of various genres of memoir and life writing offered by LeJeune (1982); Gilmore (1994);
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and Zwerdling (2017). The latter suggests that the term “memoir” should be used to indicate works
that are distinguished from “more public kinds of autobiographical writing” and linked to a “secular
confessional tradition” with its origins in the works of Rousseau and other authors associated with the
European Enlightenment (3).
2 On the history of disability welfare benefits in the United States, see Erin Syron (2002) and DiNetto
(2000).
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McRuer, Robert, and Anna Mollow, eds. Sex and Disability. Duke University Press, 2012.
Quayson, Ato. Aesthetic Nervousness: Disability and the Crisis of Representation. Columbia University
Press, 2007.
Stone, Deborah A. The Disabled State. Temple University Press, 1984.
Strombeck, Andrew.“David Wojnarowicz, Gordon Matta-Clark, and the Fordist Crisis in 1970s New York.”
Post 45 (October 2016): http://post45.org/2016/10/david-wojnarowicz-gordon-matta-clark-and-
the-fordist-crisis-in-1970s-new-york/.
Syron, Erin. “The Disabled Welfare Program: The Welfare System and the Disabled.” Human
Architecture: Journal of the Sociology of Self-Knowledge vol. 1, no. 1 (Spring 2002): 93–103.
Taylor, Sunaura. “The Right Not to Work: Power and Disability.” Monthly Review vol. 55, no. 11 (March
2004): http://monthlyreview.org/2004/03/01/the-r ight-not-to-work-power-and-disability/.
Wojnarowicz, David. Close to the Knives: A Memoir of Disintegration.Vintage,  1991.
Zwerdling, Alex. The Rise of the Memoir. Oxford University Press, 2017.
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27
DISABILITY NARRATIVE,
EMBODIED AESTHETICS AND
CROSS-M EDIA  ARTS
Stella Bolaki
Introduction
This chapter expands the conception of disability life writing beyond narrative or linguistic
frameworks and shows the potential of literary disability studies to engage with innova-
tive, experimental and mixed or cross-media genres. These include artists’ books, textile art,
comics and digital storytelling that also blur the boundaries of art, activism and autobiography.
Following interventions by cultural disability studies critics such as Simi Linton (153) and Tobin
Siebers (3), it foregrounds questions of genre, form and aesthetics in order to demonstrate how
artworks about disability not only enlarge our vision of human difference but also complicate
notions of the aesthetic and can transform how we think about the arts and their function.
By studying disability in the context of the humanities and the arts, disability emerges not as
a personal tragedy or medical issue but as “a fresh critical” and creative category (Hall 16). It
opens up space to explore imaginative processes that model new modes of representation and
forms of knowledge about the body; to think about the ethics and politics of witnessing; as well
as to experience how disability reconfigures reading practices and our relationship to the aes-
thetic qualities and materiality of various artworks.
While showcasing some contemporary examples that give a sense of the rich variety of
genres and art forms that can be encompassed by the field, through the focus on dyslexia, mul-
tiple sclerosis and schizophrenia, the chapter also concentrates on disabilities that have been
given less attention than physical disability, or which have been largely approached through
medical/health humanities perspectives. Alice Hall explains that “the ‘discomfort’ with which
disability studies has taken up questions of cognitive difference is connected to the fact that the
social constructionist models of disability fit more easily with physical disabilities in which ‘dis-
abling’ environmental factors and social attitudes can be clearly located outside of the individual
with impairments” (107). The works by Alison Stewart, Deborah Humm and Ravi Thornton
that I discuss in the following sections productively negotiate tensions between “disability” and
“impairment” (as well as interrogating these terms), mind and body, and the medical and the
social, all of which represent key debates running through the field’s different “waves”. Despite
their distinct histories, disability studies in its current shape can be seen to intersect with the
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second wave of critical medical humanities “in the politicisation and the theorisation of the
body, and in the politics and ethics of care” (Whitehead and Woods 13). In augmenting trad-
itional approaches to narrative, building on recent work in health/medical humanities (Woods;
Bolaki;Wasson), this chapter forges additional connections across the disciplinary divide between
cultural disability studies and critical medical humanities as well.
I begin with a discussion of textile artworks that imaginatively convey the artist’s difficulty
with textual communication as a result of dyslexia. I then move on to experimental conceptual
art that explores “broken signals” associated with the experience of multiple sclerosis. I con-
clude with a relational and participatory narrative of schizophrenia which starts from poetry
and evolves into a cross-media project consisting of a stage musical performance, a graphic novel
and a digital narrative app. All these examples focus on art forms and genres that extend the
“intimacy” that literary narrative allows with disabled characters by inviting readers’/viewers’
active participation through physical handling, multisensory interaction, co-construction and
collaboration (Snyder and Mitchell 6).
Textile art, textual barriers and dyslexia

Alison Stewart’s textile art not only redresses the relative lack of attention that has been given
to cognitive difference in the field of disability studies compared to physical disability. It also
offers a fresh way in which cognitive difference, particularly so-called specific learning diffi-
culties, can be explored through an innovative medium. Stewart gestures towards the social
model of disability by referring to the ways in which her artistic practice that “developed
from her struggle with dyslexia” aims at “removing her own communication barriers” (“Artist
Statement”). Barriers are not only architectural but can also be sensory, affective and cogni-
tive. Stewart has devised a visual system of communication that doesn’t rely on language but
on fabric; she customarily takes the written “word” –what she perceives as a disabling factor
or barrier –out of her source material, usually books or maps, and replaces it with fabrics and
threads, where pattern, colour, texture and imagery give “an alternative understanding to text”
(“Artist Statement”).
For example, in Fabricback Novel (2010), a textile artist’s book, Stewart made the twenty
pages that the book consists of using different techniques: weaving, felting, knitting, crocheting,
free machine embroidery or a combination of two crafts (Figure 27.1). These pages are bound
together using wooden spares, nuts and bolts, and are either formed in rows or embedded
with lines of black threads, wool or string, to signify letters, words and sentences (“Fabricback
Novel”). A similar process is followed in another series she produced called Newsfabrics (2010–
11) that reflects how she “reads” a newspaper.1 In both Fabricback Novel and Newsfabrics, trailing
threads are left attached; extending the metaphor of textile as a vehicle of conveying difficulties
with linguistic communication, Stewart draws an analogy between these “loose ends” and “the
text falling apart” (“Artist Statement”).
Stewart’s textile art has been described as a way of “transcribing information” or “mapping”.
Among her artistic influences she lists Grayson Perry and Tracey Emin who use their “ ‘self ’
within their textiles” (“Artist Statement”). However, works like Fabricback Novel and Newsfabrics
are not conventional autobiographical narratives about disability in the sense that dyslexia is
not merely a subject matter. Artists’ books typically integrate their formal means of realisa-
tion with their themes and Stewart’s work is no exception. By moulding books, newspapers
and maps according to her reading experience, she not only “elevates stitch to the realms of
fine art” (“Artist Statement”) but also contributes to an embodied and multisensory aesthetic
that has been described as “disability aesthetics”. “The idea of disability aesthetics”, according
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Embodied aesthetics and cross-media arts
Figure 27.1 Alison Stewart, Fabricback Novel (2010). Image by Egidija Čiricaitė.
to Siebers, “affirms that disability operates both as a critical framework for questioning aes-
thetic presuppositions in the history of art and as a value in its own right important to future
conceptions of what art is” (20).
Stewart’s work experiments with innovative techniques of representation that defamiliarise
conventional notions of reading. This is not new to disability studies, but less attention has been
given to how cognitive difference can make a distinct contribution to this reconceptualisation
of reading. Visual impairment “foregrounds and reconfigures the physical and phenomeno-
logical aspects of reading processes through the engagement with technologies such as Braille,
computer scanners, audiobooks, and through attention to representations of sound, texture, and
smell in textual forms” (Hall 91). By removing words and replacing them with fabric, Stewart’s
work is bound to confuse and unsettle those readers who are accustomed to seeing letters and
words in print. But it also participates in an alternative kind of mapping that her viewers or
readers can enjoy discovering for themselves. As she writes, she wants them “to contemplate
and unravel their own journey” through familiar reading material such as maps, paperbacks and
newspapers (“Artist Statement”).
Fabricback Novel and Newsfabrics are multisensory and invite handling and interaction. Artists’
books are all about interaction: Breon Mitchell characterises their reading as “a performance”;
the “ideal” reader is someone who “plays” the book, “actualising” the various elements the artist
has built into it, as if it were a “musical score” (162). Readers of course don’t need to be aware of
the artist’s dyslexia to appreciate Stewart’s work and, in fact, handling this multi-textured material
might simply be about its sensuous elements. Artists’ books have a powerful effect on account
of their tactility and one-to-one intimate interaction with readers (Bolaki 57). However, having
that additional piece of information about the theme of this textile book adds another dimension
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to the reading/handling process, infusing it with ethical and political concerns without taking
away from its aesthetic value. For example, it can help readers reflect on the highly contested but
seemingly stable category of dyslexia (as Craig Collinson writes, we tend to refer to people as
having or not having dyslexia as if it is a “thing” rather than a constructed concept) that may in turn
open up a critical re-evaluation of concepts such as “literacy”,“illiteracy” and “multiple literacies”
(“Dyslexics” 64). It may further direct attention to each viewer’s/reader’s responsibility as they
physically engage with the topics explored in these works, including even a recognition of their
part in the Othering experienced by people who fail “to meet social and educational norms of
literacy” and are thus defined as dyslexics (“Dyslexics” 68).
Stewart has not, as far as I am aware, explicitly addressed the ways dyslexia is conventionally
understood. Nor has she situated her work (for example in accompanying artist’s statements)
in the context of disability studies.Yet, her artistic process of removing “textual barriers” can be
viewed in relation to what Collinson calls “Lexism”, a long-standing “dominant lexic discourse”
that surrounds the concept of literacy. As Collinson explains the importance of the distinction
he draws, “The traditional definition is that of a psychological and neurological impairment
called ‘dyslexia’. Alternatively if dyslexics, as I propose, are defined by Lexism, the primary issue
is one of civil rights: and thereby political not ‘scientific’ ” (“Dyslexics” 64–65). In other words,
it is “our cultural preconceptions of literacy” that “create a norm in relation to which dyslexics
are judged abnormal” (Collinson, “ ‘Lexism’ ” 153).
Writing in the specific context of education and drawing on the work of philosopher
Ludwig Wittgenstein, Collinson outlines a series of thought experiments that consider what
would need to occur for the term “dyslexic” to cease to exist. He invites us to envision a
society that “gradually evolves over many decades to become completely without written
texts”, for example “where the storage of language-based information is purely through
audio files” (“Dyslexics” 66). Stewart’s alternative books, newspapers and maps have a place,
indeed could build, such a society. In her discussion of Fabricback Novel, she notes that “iron-
ically the root word of textiles is text” (“Artist Statement”). I interpret this, particularly the
qualifier ironically, as recognition of the aforementioned lexic discourse, but it can equally
be seen as emblematic of the “force of the analogy between writing and weaving” (Ingold
72) that is at the heart of Stewart’s artistic process. In fact, as Tim Ingold helps us chart the
history of that analogy, it is more the other way round; text begins as a “meshwork of inter-
woven threads rather than inscribed traces”. Both words “text” and “textile” derive from the
Latin texere, which means “to weave” (Ingold 63). It is the thread of the weaver that becomes
the thread of the writer and Stewart’s work can be seen to reverse that “natural” develop-
ment. In this way she challenges dominant notions of literacy and thus takes us a step closer
to the post-dyslexic future dreamt by Collinson.
While Collinson is concerned that it would take great “lengths” for the “genuine inclu-
sion” envisaged through his thought experiments to become a reality (“Dyslexics” 67), art,
however committed it may be, does not need to translate into a set of policies. This does not
mean that it is less radical; like philosophical thinking, it is a powerful site of experimenta-
tion that has the potential to disrupt conventional ways of thinking about not only disability
but also imaginative work itself. Stewart’s work opens up space to explore both aesthetic
and political questions surrounding disability, literature and art. It not only challenges aes-
thetic hierarchies within fine art but also draws attention to how literacy can be articulated
and understood through the visual and the tactile as opposed to the textual. Her innova-
tive techniques and textile/artist’s book media enrich conventional notions of disability life
narrative by modelling multisensory ways of expressing experiences of cognitive difference
for herself and others.
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“The thought thug that goes on in one’s mind”: bodily languages

of multiple sclerosis
Like Stewart who uses textile as a metaphorical and interactive vehicle to convey her diffi-
culties with text, Deborah Humm uses multimedia experiments that cross the boundaries of
poetry, drawing, audio, film and sculpture to “heighten” her audience’s awareness of miscom-
munication between brain and body that is typical of multiple sclerosis (Humm, “About”).
Humm, who has been diagnosed with this condition, is particularly interested in representing
“demyelination”: the destruction or loss of the myelin sheath in the central nervous system that
impairs the transmission of signals in the affected nerves and becomes responsible for a range
of disabling symptoms experienced daily by people with MS. Although not autobiographical
in a straightforward way, Humm’s immersive and participatory artworks attempt to make her
viewers experience the frustration and randomness of lost and broken signals, misinterpretations
and errors –or, as she puts it, “the miasma of thought thug that is in one’s mind” (“Voyage of
the Line” 1) –so as to form a better understanding of an often “invisible” disability such as MS.
As in the case of recent poetic work where disability is manifested primarily through its form
rather than narrative,2 Humm is committed to an embodied aesthetics. She has experimented
with devising a “bodily” or “biorhythm” language through the use of automatic drawing and
draws on particular poetic constraints and structures to give shape to complex experiences that
represent MS as more than a pathologised medical issue.
Her poetry book, The Variance,Vagaries and Extreme Randomness of MS (2015), references MS
through phrases such as “black foggy scary voids”, “tendon reduction”, “random symptoms”,
“heavy legs…forever fidget”; metaphors such as “Ants crawling under my skin”, “Rose thorns
under the skin” or “Internal thought fog”; and exclamations: “Overwhelmed, where has my
head gone expert?”, “Overstimulation threats meltdownment”, “Need to get out, get out,
escape the BLARE”. However, what is distinctive about this book is not its content but its
structure, or rather, as in the case of most artists’ books, the interplay of the two. Vagaries is a
digitally printed and cut poetry book written with mathematical constraints: fourteen lines per
page, ten syllables per line, and the last phoneme/sound on each line throughout the ten pages
of the book is the same. Due to this construction, the poems/sonnets are interchangeable while
the cut poetic lines give the book almost limitless possibilities. The structure is indebted to
Raymond Queneau, the Oulipian who invented the 100,000,000,000 poem format. Queneau’s
Cent Mille Milliards de Poèmes (1961) was inspired by children’s picture books in which each
page is cut into horizontal strips that can be turned independently, allowing different pictures
to be combined in numerous ways. Humm adapts this format to highlight broken signals and
miscommunication associated with her condition.
While it may come as a surprise that rigid shapes and poetic forms can provide freedom,
poet Laurie Clements Lambeth, who also lives with MS, has embraced “formal containment”
(176). She explains that the subject of MS was “too expansive and tentacled, too emotionally
unpredictable” so “the cage of a villanelle” (used in one of her poems) seemed a good way of
restricting it or giving it some shape (175). In Humm’s case the 100,000,000,000 poem format
retains the tension between expansiveness and “patterned language” (Lambeth 175). Lambeth’s
poetry expresses neurons misfiring and seizures in “vividly physical subject and form”, for
example through the use of long lines disrupted midstream or a slanted gutter down the middle
of some of her poems that conveys brokenness (176). Humm’s cut lines have a similar effect but
Vagaries, like a musical instrument, can be “played” in lots of ways by readers (Figure 27.2).They
are instructed, in the book’s introduction, to use the bookmark provided from top to bottom
or bottom to top in order to hold their chosen line: “Then open the page to reveal your own
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Figure 27.2 Deborah Humm, The Variance,Vagaries and Extreme Randomness of MS (2015). Image by
Egidija Čiricaitė.
creation. You become the poet with these interchangeable formations, the active reader, the
participant, the fellow creator.”3
Considering her artistic influences, which include composers like Philip Glass and avant-
garde filmmakers like Michael Snow who give attention to “duration” in their experiments
with sounds and concrete poetry, it is obvious that Humm appreciates works that seek “to pro-
vide a situation where people can become more aware of themselves and their own experiences
rather than more aware of some version of my experience” (“About”). Humm describes many
daily activities that others take for granted as involving frustration: “Demyelination is my
enemy: the constant rebuilding of new paths around the broken –it’s hard to keep up –
fatigued, my system is working twice as hard before I even do anything, I am frustrated”
(“Voyage of the Line” 4). As they embark on their own journey, imitating the movement
of neurons, readers handling Vagaries also need to work on rebuilding new paths. Whether
they become frustrated and experience a sense of failure in putting their poem together or
approach it as a creative exercise is open for debate. What is certain is that in the end each
poem will be different –“like snowflakes no two neurons are exactly alike”, as Humm reminds
us (“Voyage of the Line” 3).
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In addition to the book’s cut lines, line imagery recurs in the poems’ content: “A line is cut
and the world is knotty”; “Zigzag lines full of anticipation”; “Wiggling and squiggling swirly
mass of lines”. However, Vagaries also includes drawings from Humm’s “biorhythm series”,4
created by taking a black pen line “for an automatic walk” (“Voyage of the Line” 9). Without
looking, thought control or aesthetic choice, Humm has been using her body as a “seismo-
graph” to capture “bodily biorhythms and movements: coughs, sneezes, hiccups, yawns, sniffs
and twitches” (“Voyage of the Line” 5). Like Lambeth who describes the villanelle as an “obses-
sive” (albeit restrictive) form to house one of her MS poems (175), Humm alludes to the
“repetitive but creative” nature of her automatic drawings (“Voyage of the Line” 1).
Reinterpreting Henri Lefebrve’s Rhythmanalysis (1992), a work concerned with patterns of
activity and movement and with the body in space, Humm reminds us about her automatic
drawing practice: “In order to grasp and analyse rhythms, it is necessary to get outside them,
but not completely: be it through illness or a technique. […] to grasp a rhythm it is necessary
to have been grasped by it; one must let oneself go, give oneself over, abandon oneself to its
duration” (“Voyage of the Line” 3). Being in a position to situate herself simultaneously “inside”
and “outside” this rhythm, with her “journey” drawings5 that capture the movement of neurons
Humm rethinks the well-known metaphor of illness and disability as a journey that we find
in many personal narratives. Instead, her work shows what disability more broadly can provide
artists, as opposed to what artists can do despite disability.To echo Linton, artists with disabilities
can display “rhythm and pattern that are exciting” (212). The focus here is not on a disabled
artist as an “inspiration” but on the contributions that such novel forms of expression can
make to aesthetics and other fields of knowledge. By articulating “the correspondence between
an internal synapsis mishap and an external hand twitch” (“Voyage of the Line” 5) Humm’s
drawings literally evolve a bodily language waiting to be deciphered. As she affirms, citing artist
Robert Motherwell, “Plastic automatism…is actually very little a question of the unconscious.
It is much more a plastic weapon with which to invent new forms” (“Voyage of the Line” 3).
To complement Vagaries, Humm has also produced a short film, TERMS (an acronym for
The Extreme Randomness of Multiple Sclerosis but also a play on the phrase “coming to
TERMS”). Viewers watch the first three pages of Vagaries flash before their eyes, and with
this film that draws on the tradition of concrete poetry, and its typewriter sound effects, she is
able to express visual disturbances such as optical neuritis and the overstimulation that can be
found in her earlier poems.6 In one of her exhibitions, Humm brings all these media together,
displaying the book suspended mid-air, with the film playing in the room, and the cut poetic
lines dispersed on the floor.This installation enhances the message of broken signals and as such
the MS view of the world, but this time on a bigger scale rather than through the intimate one-
to-one encounter with an artist’s book.7
While not strictly a poet, Humm’s Vagaries can be situated in the tradition of a new dis-
ability poetics that “defamiliarizes not only language but the body normalized within language”
(Davidson 118). Like “the beating hearts, limping gaits, tapping canes and the humming of a
respirator” that we encounter in the poems of the collection Beauty Is a Verb (2011), Vagaries
demonstrates a “fine attunement to the rhythms of the body” (Hall 157). In inventing a new
bodily language, it not only communicates the experience of MS but also what it means to be
human –a question that Humm’s practice reveals the arts can approach in much more imagina-
tive and powerful ways than the field of biomedicine:
In the process becoming so indecipherable, so intense, so visually stimulating you can

almost hear it: a white noise. Envisioning the sinewy tangle, a kaleidoscopic mess of
nerve (mis)communication, the thought thug that goes on in one’s mind so chaotic
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you cannot hold onto one line of thought, one strand, you cannot pluck, follow or
grasp one line of enquiry, engagement or one moment from the overwhelming sense
of overstimulation, a cacophony of journeying lines building into a great crescendo.
Thank goodness for Art, for how else would one express this notion.
(“Voyage of the Line” 5)
Cross-media aesthetics and the experience of schizophrenia

The powerful contributions of art as an alternative form of expression for experiences that are
difficult to capture and share are also attested by the HOAX project. Like Humm’s journeying
lines building into a great crescendo, this is a trilogy of artworks, based on a poem with the same
title, written in 2004 by poet and Ravi Thornton’s brother, Rob. Rob wrote hundreds of poems
that explore his state of mind while he was living with schizophrenia over a decade, until his sui-
cide in 2008. Drawing on these poems,Thornton wrote the scripts for the stage musical HOAX
My Lonely Heart (2012–14) and the graphic novel HOAX Psychosis Blues, produced by Ziggy’s
Wish in 2014. These two pieces were later joined by the HOAX Our Right to Hope narrative
app, following a partnership with the Psychosis Research Unit (PRU) in 2015,8 and the project
toured across the north of England in spring 2017. The shift from My to Our in the respective
titles of the musical and the app captures the fact that Rob’s story is also “many people’s story”.9
The app, a “gamebook-style app”, allows users to participate in the direction of Rob’s life
narrative. Participants are invited to interact with the app, experience the stage musical, interact
with the app a second time, take home the graphic novel and then interact with the app again.
The HOAX Our Right to Hope app extends the musical and graphic novel content both into the
past and into the future (to life –real and imagined –after Rob’s death) but also constitutes a
mental health research study. Housing the PRU’s optional study questions and using digital tools
that allow rigorous data capture, it seeks to explore and understand stigma around mental health
in order to raise awareness and support people who experience similar difficulties to Rob.
Ravi Thornton has described herself as “a cross-media script writer” (“Writing HOAX”).
Her account of how this project evolved to combine different art forms raises important
questions about the relationship between disability, representation and audience response while
also illuminating the process of adapting one genre into another. The musical was born when
she found “the dialogue” of the script “coming out in verse –a reflection…of the poetry under-
lying it” which she let happen. A combination of physical theatre and “dark musical”, HOAX
My Lonely Heart focuses on Rob’s relationship with the woman he loves, Helen, and its eventual
breakdown. It delves into his emotions over a six-month period preceding his diagnosis with
schizophrenia and leading to his first major psychotic episode. As Thornton further explains:
It’s written to be hard-hitting. Stage scripting allows you to deliver a very immediate
kind of intensity to the audience, and I wanted to give Benji [Reid, the director] every
chance to deliver that physical punch that knocks you off your feet. I wanted this piece
to act as a bold and forceful “call to action” to put mental health on the table.
However, that level of force can be too much for some people, and it was important
to me that this project remain as widely audience-accessible as possible. Mental health
is a very sensitive subject. People need to be able to enter this story at an emotional
volume to suit themselves, and to that end I needed another medium –one that is
no less powerful, but whose power can be meted out in a different way. I chose the
graphic novel.
(“Writing HOAX”)
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The choice of these two distinct art forms also captures the particular manifestations of schizo-
phrenia; in Thornton’s words, it conveys the times it was “immediate and so in your face” and
other times when it was “impassive and distant”, or else the “internalised” and “externalised”
manifestations of this condition (“Interviews”).This description encourages us to reflect on the
question of how people “enter” disability narratives. The answer depends on who these people
are (the answer may differ, for example, if it is people experiencing similar difficulties to Rob
and even then, there may be further differentiation) and what the subject is (is mental health a
more sensitive subject than other disabilities because of its stigma?). But genre and medium are
also implicated in these highly politicised questions about the aesthetics and ethics of empathy
in the context of artworks about disability. In the case of artists’ books, such as in the examples
of Humm and Stewart, even if people did not want to “touch” the topics explored by them,
the book form requires handling and interaction. Thornton describes the musical as a “forceful
‘call to action’ ” and the graphic novel as “a quieter way of telling that part of the story” so “you
have that space and you have that time to take it in at your own pace” (“Interviews”). This
description recalls the distinction that Alan Radley makes between stories of illness that exist
within the frame of activism and those that engage “the art of witness” by recreating a person’s
experience for others to acknowledge and understand (41).
However, this distinction between activism and art, which has also “propelled forward” the
field of cultural disability studies (Hall 14), doesn’t neatly map onto HOAX’s distinct components.
Thornton maximises the opportunities for encountering and responding to her brother’s story
by creating this trilogy of artworks that can be experienced as standalone pieces or parts of a
whole.The project encourages audiences to be responsible, in Kelly Oliver’s sense of “response-
able” (7), and therefore engages them as witnesses to Rob’s testimony. The project does seek
to improve the situation of people like Rob (PRU’s mental health studies aimed at decreasing
both public-stigma and self-stigma around mental health serve that purpose). But, as Thornton
explains, even though “neither HOAX script was written as a criticism of the mental health
efforts that were afforded my brother”, “throughout the narrative there is a sense [because that
was Rob’s reality] that something isn’t quite right with the system” (“Writing HOAX”).
There is something powerful about the durational aspect of this project as well, even as
the audience retains the freedom to choose where/how to enter Rob’s story. Thornton has
suggested that ultimately it is the combination of all parts “that make this story one of a man
and his humanity rather than simply a portrayal of his illness” (“Writing HOAX”). I would also
add that it is the aesthetic, as well as political and ethical, elements of these parts that make the
project so compelling, and that revisiting Rob’s story through the different components keeps
the practices of witnessing and response-ability that underlie it open not only for Thornton (as
sister and artist who represents another person’s experience) but also for its varied audiences.
The HOAX project combines Rob’s moving and highly evocative poems with non-verbal
elements –music, physical theatre, the comics genre and digital storytelling –to capture what
cannot be easily put into words or made visible. Their combined effect results in a rich explor-
ation of “the socio-somatics of disability: how disability feels and what an impairment means
socially for the disabled person” (Squier 74), his family and friends. The physical theatre parts
of the performance capture emotions of the moment as well as important aspects of the lived
experience of schizophrenia. For example, Rob’s behaviour during psychotic moments, when
his mood changes and he starts drinking or becomes frustrated with the process of writing,
though described through words in Thornton’s script, becomes manifested as an external entity
when HOAX is performed. While Rob and Helen are the two protagonists, a third silent
character/actor (referred to as “The Condition” by the directing team) becomes gradually vis-
ible on the stage: initially as a shadow haunting the couple and later on manipulating Rob’s
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Figure 27.3 HOAX My Lonely Heart. Writer: Ravi Thornton © 2014. Director (theatre): Benji Reid.
Director (film): John Grey. Stills credit: John Grey © 2017. Actors: Christopher Tendai playing Rob,
Danny Solomon playing The Condition. Producer: Ziggy’s Wish Ltd.
surroundings and his limbs as the illness takes hold. In one of the most visceral scenes, he helps
Rob force crumpled paper containing his poetry into his mouth (Figure 27.3). However, that
character’s presence in other scenes reveals how Rob’s condition sometimes manifests as having
a comforting role, such as when he cradles Rob in his arms.
In recent years there has been a growing interest in unconventional and experimental media
for representing disability and illness.10 Susan Squier has argued that comic books, “shadowed
as they are by the label abnormal” (in that they are perceived as childish or even “develop-
mentally disabled”) can “offer a rich area in which to explore some crucial issues in disability
studies” (72). Comics are “universal” (McCloud 31) and promote imaginative identification,
which fits Thornton’s aim of making Rob’s story relevant to others and raising awareness about
schizophrenia. Moreover, as a medium that combines “verbal” and “gestural expression” (Squier
74), comics are able to “reveal the social processes that disable” someone while also drawing
attention to the ways disability is “embodied”, thus navigating ongoing debates surrounding the
“social model” and the distinction between disability and impairment in the field (Squier 77).
HOAX Psychosis Blues functions in all of these ways. It brings together Rob’s lyrical poetic
voice that articulates his lived experience and a corresponding “kaleidoscope of rich worlds”
(Thornton, “Writing HOAX”) executed by the multiple illustrators of this graphic narrative,
chosen to match the mood and atmosphere in each separate poem through their individual
artistic approaches. While “The Condition” character in the stage musical controls Rob’s limbs,
with their expressive lines, attention to posture and facial expression, vivid colours, abstract
shapes and psychedelic imagery, the graphic narrative illustrations evoke mental states and
feelings that are hard to articulate. For example, they “penetrate” Rob’s mind through images
that show us the contents of his head (as in the “Detainment” segment illustrated by Ian Jones) to
capture “the fight with my mind against thoughts that aren’t mine” (Thornton, HOAX Psychosis
Blues 70). “Roach Psychiatry” by Mark Stafford has a nightmarish quality and uses grotesque
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imagery to express Rob’s protest against the dehumanization of institutionalization: “They can

never dissect my essence, no matter how hard they try” (Thornton, HOAX Psychosis Blues 16).
In turn, “A Desolate Spot” by Karrie Fransman personifies mental distress to reveal how Rob
perceives it (Figure 27.4).
By emphasising “the ever- changing landscape of the schizophrenic mind” (Thornton,
“Writing HOAX”), the multiple illustrations also challenge what Catherine Prendergast has
called “the stable schizophrenic, easy to incarcerate, or easy to celebrate as the occasion requires”
(61). Prendergast calls for attention to those narratives produced by people who mark them-
selves “as non-exceptional [ordinary] schizophrenics” (55) and claim the right to own their
experiences by speaking publicly on those issues that affect their lives. In this sense, the graphic
narrative’s framing sequence, illustrated by Leonardo M. Giron, is significant. This sequence
is the only realistic one and contains everyday snippets of conversations between brother and
sister, dipping in and out of Rob’s life on an annual basis over several years, to build up the
reader’s empathy with his struggle with schizophrenia. As Andy Oliver suggests, this sequence
“is essential in portraying Rob as seen by others –Rob as the protagonist in the story of his life
rather than commentator on it” (HOAX Psychosis Blues).
Though comic books are not tactile like most artists’ books, they foster intimacy with
their audiences through what Scott McCloud calls “closure”: comic panels offer unconnected
moments to their readers, but readers connect these moments by filling in the gaps between
panels to “mentally construct a continuous, unified reality” (67). McCloud calls this “a silent,
secret contract between creator and audience” (69), which in the case of HOAX Psychosis Blues
is also ethical given that the narrative engages its readers as witnesses to Rob’s testimony. The
fact that “closure” may not always happen effortlessly for readers is more poignant here, as it
reflects the difficulties Rob encounters as a result of his distinct perception of the world; such
perception is succinctly captured in one of the lines from the narrative app: “I want to see the
whole but I can only see the parts” (HOAX Our Right to Hope).
McCloud describes closure as “the agent of change, time and motion” (65).This is manifested
in the graphic narrative not only through the framing sequence mentioned above, but also
through a drawing that forms gradually between segments (as lines are being added) to create
the shape of a butterfly. This butterfly image is how Rob appears to his sister after his death in
the penultimate chapter of the book that precedes the segment “A Load Lifted” that portrays his
suicide. Resisting both the “narrative of overcoming” and the “tragic hero motif ” that we often
find in popular representations of disability, HOAX Psychosis Blues thus infuses its readers with a
sense of hope –seen through the closing images of transformation, wings and floating that stay
faithful to Rob’s poems –while not shying away from the reality of his death.
Hope is what drives the project’s interactive narrative app too, HOAX Our Right to Hope.
On Ziggy’s Wish website, we see a cartoon image of Rob, like the ones used in the storytelling
parts of the app, appealing to audiences’ curiosity and “response-ability”: “From break up to
break down, you can see my whole journey –and even get the chance to save me in the end.”
While comics rely on an audience being “a willing and conscious collaborator” (McCloud 65),
participation is internal or implicit; in the case of the narrative app, it is externalised as viewers
need to navigate it by making specific choices that require touching their iPads or other mobile
devices. Though it doesn’t replicate the materiality of artists’ books, this is a tactile and immer-
sive experience, involving more than one sense, especially if we consider the use of music and
some of the app’s animated effects facilitated by digital technology.
Once unlocked, participants can complete the app’s four parts in their own time and make
various directional choices around Rob’s life choices –take one path offered or go back and
take another to see what changes with the plot –and in the process decide how he relates to his
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Figure 27.4 HOAX Psychosis Blues. Page 39, First Edition. Page 35, Second Edition. Author: Ravi
Thornton © 2014. Illustrator: Karrie Fransman © 2014. Chapter: A Desolate Spot. Publisher: Ziggy’s
Wish Ltd.
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(a) (b)
Figure 27.5 HOAX Our Right to Hope. Writer: Ravi Thornton © 2017. Co-writer: Laura Harper.
Illustrator: Andrew Chiu. Producer: Ziggy’s Wish Ltd.
“voices” (frequently portrayed through the image of a mouth that sometimes speaks an incom-
prehensible language), whether he resists them, and how much they control his actions. In some
cases choosing one option results in a dead-end situation where participants are confronted
with a lack of agency. For example, Rob (and by extension each user of the app) is faced with
the choice “War” or “Peace” when his voices ask him to resist the medication he is offered.
If users choose “Peace”, they get a screen with a stop message “There is No Choice Here”
(Figure 27.5a), which forces them to go back.When Rob is contemplating suicide and wonders
what would have happened if he had chosen differently, users are once again presented with two
choices: “Go back to that moment” or “Stay in the present”. The latter means that he doesn’t
survive whereas the former puts each user in a position where they are given the opportunity to
prevent Rob’s suicide. As this dramatic scene unfolds, Rob is sitting on the edge of a rock up a
hill and seems “agitated, erratic and tense”. The text addresses each participant directly through
the pronoun “you”. Two options are offered: “You move closer”; “You stay where you are”. In
the ensuing dialogue with Rob, a blank box is used where the image of his interlocutor would
normally be. This is because each user has to imagine himself or herself talking to Rob in an
attempt to save him (Figure 27.5b).11
This interactive storytelling is interspersed with screens containing Rob’s poems, definitions
of particular concepts that are being introduced at different times (for example “The Prodigy
Trial” in part 3 of the app,“an ongoing research study aiming to reduce social disability associated
with various long term mental health conditions”, which is presented as one option available
to people like Rob) as well as statements and questions that are part of the mental health study.
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Stella Bolaki
Users who volunteer to take part can choose, for example, whether/how much (on a scale)
they agree or disagree with statements such as “people experiencing psychosis are dangerous
to others” or “I could imagine making friends with someone who has had psychosis”. These
“interruptions” of Rob’s story, alongside all the other choices participants make as they interact
with the app (where at different points they “become” Rob, his voices/his condition as well as
the person who tries to prevent his suicide), play an important role. As Angela Woods has argued,
“to be open to the dynamics of testimony is to start to recognise one’s own position within the
matrix of power relations in which conflicts over the nature and meaning of mental ill-health,
suffering and trauma are articulated” (49).This is true of responses to the HOAX project. As one
participant, Sarah Radford, has commented, “It has made me think a lot about people I know
who are or have experienced psychosis…and reflect on the way they are treated by people, ser-
vices and by me!”12
The works by Alison Stewart, Deborah Humm and Ravi Thornton explored in this chapter
are only a few contemporary examples that give a sense of the rich variety of mixed/cross-
media genres and innovative art forms that can be encompassed by the field of cultural dis-
ability studies. Such works that adopt the formats of artists’ books, textile art, comics and digital
storytelling, model new modes of representation and knowledge about the disabled body,
while concentrating on experiences that have been given less attention than physical disability.
Moreover, Stewart’s, Humm’s and Thornton’s respective projects on dyslexia, multiple scler-
osis and schizophrenia enrich conventional notions of disability life narrative in various ways.
Complicating the boundaries of art, activism and autobiography they draw attention to formal
experimentation and fashion distinct embodied aesthetics that demonstrate how disability
can transform how we think about art rather than merely about human difference. These are
evocative works that privilege the visual, the tactile/multisensory, the performative and the par-
ticipatory to capture what cannot be easily put into words. They offer their various audiences
intimate and immersive opportunities to actively experience (and re-experience through their
durational and evolving dimensions) how disability reconfigures reading practices, and how
interaction with these works and their disability aesthetics in turn illuminates the ethics and
politics of witnessing.
Notes
1 Images from this series can be seen at: http://alisonstewartartist.co.uk/?page_id=310.
2 See, for example, the collection Beauty Is a Verb: The New Poetry of Disability (Bartlett, Black and
Northen).
3 One of the hundred thousand billion possible poems that can be created out of this poetic structure
can be seen at: www.linkedin.com/pulse/what-do-you-think-deborah-humm.
4 Drawings can be seen on her website: http://deborahhumm.co.uk/wp/?page_id=309.
5 The process of these drawings can be seen in the section “Films” on Humm’s website: http://
deborahhumm.co.uk/wp/?page_id=474.
6 The film is available to watch from: www.youtube.com/watch?v=j8iO060UvtM.
7 A clip of the installation can be seen at: http://deborahhumm.co.uk/wp/?p=669.
8 The project was supported by Arts Council England. Psychosis Research Unit is a joint project
between the University of Manchester and Greater Manchester West Mental Health NHS Foundation
Trust. For more information on the mental health studies undertaken as part of the HOAX project, see
Ziggy’s Wish website: http://ziggyswish.com/portfolio/the-hoax-project/.
9 HOAX Our Right to Hope, programme flyer, Ziggy’s Wish, 2017.
10 The “Graphic Medicine” website hosts a number of examples that explore the interaction of comics and
healthcare: www.graphicmedicine.org/. See also Sara Wasson’s project that investigates “flash” illness
writing (both word and image) in relation to chronic pain: http://wp.lancs.ac.uk/translatingpain/.
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11 More images and dialogue from the narrative app can be found at: http://ziggyswish.com/portfolio/
the-hoax-project/.
12 Ziggy’s Wish, The HOAX Project, “Qualitative feedback”: http://ziggyswish.com/portfolio/the-
hoax-project/.
Works cited
Bartlett, Jennifer, Sheila Black and Michael Northen, eds. Beauty Is a Verb: The New Poetry of Disability. El
Paso: Cinco Puntos Press, 2011.
Bolaki, Stella. Illness as Many Narratives: Arts, Medicine and Culture. Edinburgh: Edinburgh University
Press, 2016.
Collinson, Craig. “Dyslexics in Time Machines and Alternate Realities: Thought Experiments on the
Existence of Dyslexics, ‘Dyslexia’ and ‘Lexism’”. British Journal of Special Education, vol.39, pp.63–70.
https://doi.org/10.1111/j.1467-8578.2012.00538.x.
———. “‘Lexism’ and the Temporal Problem of Defining ‘Dyslexia’”. Changing Social Attitudes Toward
Disability: Perspectives from Historical, Cultural, and Educational Studies, ed. David Bolt. London: Routledge,
2014, pp.153–161.
Davidson, Michael. Concerto for the Left Hand: Disability and the Defamiliar Body. Corporealities. Ann
Hall, Alice. Literature and Disability. London: Routledge, 2016.
Humm, Deborah. The Variance, Vagaries and Extreme Randomness of MS. 2015. Special Collections and
Archives, Templeman Library, University of Kent.
———. “About”. http://deborahhumm.co.uk/wp/?page_id=44, accessed 7 April 2018.
———. “A Voyage of the Line”. Unpublished essay. www.academia.edu/8878995/The_Voyage_of_the_
Line, accessed 7 April 2018.
Ingold, Tim. Lines. London: Routledge, 2016.
Lambeth, Laurie Clements. “Reshaping the Outline”. Beauty Is a Verb: The New Poetry of Disability, ed.
Sheila Black Bartlett and Michael Northen. El Paso: Cinco Puntos Press, 2011, pp.174–177.
Linton, Simi. My Body Politic: A Memoir. Ann Arbor: University of Michigan Press, 2006.
McCloud, Scott. Understanding Comics: The Invisible Art. Northampton, MA: Kitchen Sink Press, 1993.
Mitchell, Breon. “The Secret Life of the Book: The Livre d’ artiste and the Act of Reading”.
Conjunctions: Verbal-Visual Relations, ed. Laurie Edson. San Diego: San Diego University Press, 1996,
pp.161–167.
Oliver, Andy. “HOAX Psychosis Blues—Ravi Thornton, Bryan Talbot, Hannah Berry, Karrie Fransman
and Company Underline the Astonishing Power of the Graphic Memoir”. Broken Frontier. 6 May
2014. www.brokenfrontier.com/hoax-psychosis-blues-ravi-thornton-bryan-talbot-hannah-berry-
karrie-fransman-and-company-underline-the-astonishing-power-of-the-graphic-memoir/, accessed 7
April 2018.
Oliver, Kelly. Witnessing: Beyond Recognition. Minneapolis: University of Minnesota Press, 2001.
Prendergast, Catherine. “The Unexceptional Schizophrenic: A Post-postmodern Introduction”. Journal of
Literary Disability, vol.2, no.1, 2008, pp.55–62.
Radley, Alan. Works of Illness: Narratives, Picturing and the Social Response to Serious Disease, Ashby-de-la-
Zouch: InkerMen Press, 2009.
Siebers, Tobin. Disability Aesthetics. Ann Arbor: University of Michigan Press, 2010.
Snyder, Sharon L. and David T. Mitchell. “Disability Haunting in American Poetics”. The Journal of Literary
Disability, vol.1, no.1, 2007, pp.1–12.
Squier, Susan M. “So Long as They Grow Out of It: Comics, the Discourse of Developmental Normalcy,
and Disability”. Journal of Medical Humanities, vol.29, no.2, 2008, pp.71–88.
Stewart, Alison. Fabricback Novel. Special Collections and Archives, Templeman Library, University of
Kent, 2010.
———. “Artist Statement”. http://alisonstewartartist.co.uk/?page_id=310, accessed 7 April 2018.
———. “Fabricback Novel”. http://alisonstewartartist.co.uk/?page_id=269, accessed 7 April 2018.
Thornton, Ravi. HOAX Psychosis Blues. Illustrations: Hannah Berry, Karrie Fransman, Leonardo M. Giron,
Julian Hanshaw, Rozi Hathaway, Rhian Hughes, Rhiana Jade, Ian Jones, Mark Stafford, Bryan Talbot.
Ziggy’s Wish,  2017.
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———. “Interviews: 5 Reasons We’re Excited about Ravi Thornton’s HOAX”. For Books’ Sake. 6 June
2014. http://forbookssake.net/2014/06/06/ravi-thornton-hoax/, accessed 7 April 2018.
———. “Guest Blog: Writing HOAX My Lonely Heart/Psychosis Blues”. A Younger Theatre. www.
ayoungertheatre.com/guest-blog-writing-hoax-lonely-heart-hoax-psychosis-blues/, accessed 7 April
2018.
Wasson, Sara.“Before Narrative: Episodic Reading and Representations of Chronic Pain”. Medical Humanities.
Published Online First, 5 January 2018: 1–7. https://doi.org/10.1136/medhum-2017–011223.
Whitehead, Anne and Angela Woods, eds. The Edinburgh Companion to the Critical Medical Humanities.
Edinburgh: Edinburgh University Press, 2016.
Woods, Angela. “Beyond the Wounded Storyteller: Rethinking Narrativity, Illness and Embodied Self-
Experience”. Health, Illness and Disease: Philosophical Essays, ed. Havi Carel and Rachel Cooper.
Durham: Acumen, 2012, pp.113–128.
Ziggy’s Wish. “The HOAX Project”. http://ziggyswish.com/portfolio/the-hoax-project/, accessed 7
April 2018.
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28
A GRAMMAR OF TOUCH
Interdependencies of person, place, thing
Shannon Walters
In “Literature as Equipment for Living,” rhetorician Kenneth Burke takes a sociological

approach to discourse to explore its boundaries. After analyzing proverbs, showing them to be
words suited to a purpose, of an “active nature” for “recurrent situations,” Burke asks “Why not
extend such analysis of proverbs to encompass the whole field of literature?” (296). Burke takes
a rhetorical and sociological approach to this question because he is interested in developing
a kind of “folk criticism,” designed to connect social situations and artistic expression. From
this perspective, “art forms like ‘tragedy’ or ‘comedy’ or ‘satire’ would be treated as equipments
for living, that size up situations in various ways and in keeping with correspondingly various
attitudes” (304). In other words, literature is equipment for living because it teaches us important
things about what we value, the attitudes we form, and how to react to shared situations. In this
sense, all literature can be understood as a form of life writing, or “equipment for living” that
serves a purpose.
Within disability studies, life writing might be understood as especially crucial “equipment
for living” because it communicates the inherent value of disabled lives. Life writing by disabled
people serves social, political and rhetorical purposes, exploring wide ranges of disability
experience, countering dominant narratives about disability and offering forms of resistance.
G. Thomas Couser calls auto/somatography –a form of life writing –“one of the primary
venues through which disability authorship has spread through North American public culture
at the turn of the century” and argues that “its dissemination presents a new opportunity for
enhancing disability literacy in the body politic” (3–4). In this chapter, I explore disability life
writing as equipment for living, arguing that specific disabled writers exhibit significant rhet-
orical strategies powered by intimate, physical interconnection. To recognize and value these
strategies, I propose a grammar of disability life writing focused on the sense of touch among
interconnected people, places and things because of the critical role of physical interconnec-
tion and interdependence plays in disability experience. Exploring three recent examples of
academic life writing by United States-based writers –Christina Crosby, Eli Clare and Mel
Chen –I track how each negotiates writing challenges as disability or chronic illness changes
their writing experience. Focusing on the physical connection and its representation in writing,
I show how these writers shape a grammar of rhetorical touch comprised of people, places and
things. Studying the nouns of this grammar draws attention to the highly inventive and challen-
ging project of writing about disability and complicated interdependency.
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A grammar is an interdependent system and structure of language, including, among other

things, the study of classes of words, in addition to their functions and relations. Disability life
writing necessarily involves rhetorics that feature other people, places and things because dis-
ability is a fundamentally interdependent experience. Rhetorical touch –the ways that disabled
writers experience touch and describe touch in language –is one way to register and value
this interdependency. As I’ve explored elsewhere, touch is a rhetorical art that invites intimate
identification across diverse bodies. Rhetorical touch connects people to people and also to
nonhuman, material bodies such as places and things. Since disability is increasingly under-
stood as hinging on the interaction of a range of human, animal and nonhuman bodies, natural
and material spaces, as well and traditional and innovative assistive devices, exploring these
interactions is critical, particularly to supplement critical gaps in knowledge.
Intersections of disability with sex and gender have been relatively well-explored in the
context of embodiment and person-to-person relationships (Kaufman, Silverberg and Odette;
Shakespeare, Gillespie-Sells and Davies; McRuer and Mollow). Lesser explored is how places
and things, including environments and materials, also affect disability interdependency in the
context of gender and sexuality. This critical gap corresponds to what Kim Q. Hall calls one
of the main key sites of disability critique within gender studies: the study of “sex; impairment
and the ‘realness’ of the body” (89). Rhetorical touch illuminates and propels this attention to
the realness of the body at the complex intersection of disability, sex and gender, uncovering
ways that disabled people use life writing as equipment for living to explore contested and
complicated interdependencies not only with other people, but also with places, environments
and materials.
A grammar of touch recognizes that interdependency is difficult to communicate. The
grammars of touch –complexities between person, place and thing –contribute to the ongoing
project in disability studies to critique and refashion discourse and representation. As Mairian
Corker and Sally French explain, it is important to reclaim disability discourse in order to
address theory’s “failure to conceptualize a mutually constitutive relationship between impair-
ment and disability which is both materially and discursively (socially) produced” (6). This
challenge is clear in the difficulties that disabled writers often express in their writing about dis-
ability. Poet and memoirist Kenny Fries, born with a congenital deformity in his legs, explains
the challenge of his writing process, noting that “[s]‌even years ago I began searching for the
words with which to speak about my own experience…I took the initial steps of finding the
language, unearthing the images, shaping the forms with which I could express an experience
I had never read about before” (1–2). He recalls “what I remember most about that summer
is wanting to throw all those drafts away, not thinking them poems” (2). Discarded drafts such
as these attest to the challenges of disability life writing. Among the disabled writers I explore,
each navigates difficult compositional moments differently, calling attention to challenges of
discourse and materiality rather than editing them out or smoothing them over.
Exploring touch is one way to mediate between discursive and material productions of
disability experience, particularly in instances in which disability challenges traditional
understanding of how touch functions. The sense of touch is typically understood as a sensory
perception resulting from a combination of nerve receptors and nerve endings that relay bodily
information concerning pressure, temperature, pain and movement. Touch is also commonly
understood as a form of communication, conveying not only sensory perceptions but also com-
plex social, emotional and interpersonal knowledge. Among the five senses, touch is somewhat
unique, being the first sense to develop in the womb, it is almost never completely erased by
impairment, age or debility. Touch is both a noun and a verb; one can touch or be touched.
This grammar of touch indicates the fundamental property of touch as inherently relational
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A grammar of touch
and conditional, bringing bodies together in social-material enactments of interdependence.

Drawing on personal experience, Petra Kuppers asserts that “Disability is a realm I traverse
with a strong sense of the haptic, the touch of concepts and bodies” (225). In short, touch is
“equipment for living” in a material, physical sense as well as a social, connective sense. Touch
forms the bonds between people and their environments, connecting living and nonliving
bodies together.
Person: intimacy and strained metaphor

Christina Crosby, who details her life after becoming paralyzed in middle age following a
bicycle accident, uses rhetorical touch to express her frustration at the inadequacy of language
to represent her feelings and experiences, especially in relation to her partner, Janet. A Body
Undone (2016) is Crosby’s attempt to “begin to put into words a body that seemed beyond
the reach of language” (3). Describing her grief, pain and process of learning her new body
is a challenge. She writes, “I feel an unassuageable loneliness, because I will never be able to
adequately describe the pain I suffer, nor can anyone accompany me into the realm of pain”
(31). Figurative language such as metaphor and simile is a poor approximation for Crosby, but
useful: “ ‘As if ’ is pain’s rhetorical signature, which requires displacement of metaphor to sig-
nify –its properties can be articulated only by way of something else, and the tropes of pain
display the awkwardness of catachresis” (31). Drawing attention to the awkwardness of cata-
chresis –strained metaphor –Crosby conveys the inadequacy of existing linguistic structures
for communicating pain.
Before her accident, Crosby enjoyed a relatively normal, predictable relationship to touch.
She writes, “My whole lifetime, I had moved through the world with my body, feeling my
way, often with great pleasure and always by touch” (124). After her accident, Crosby calls
herself “untouchable,” (127), noting that her lover Janet can touch her but that her “body can’t
know how that touch feels” (127). Describing to a physician how their sexual relationship has
changed following Crosby’s paralysis, Janet says, “It’s like she’s a stone butch” (127). Crosby
untangles the metaphor, explaining, “by calling me ‘stone,’ Janet metaphorically represented my
body’s neurological incapacity as a sexual-subject position,” identifying this as “catachresis –a
strained metaphor –and bitter irony” because she desperately wants to touch and be touched
(127–128).Working through this strained metaphor allows Crosby to explore both the successes
and failures of language in communicating her new life. Metaphor helps Janet and, then Crosby,
“to illuminate an embodied life that’s opaque to both of us” (128). That fact that this metaphor
is strained is not a problem to be solved, but instead a difficult compositional moment to be
marked and highlighted.
This illumination of the opaque hinges on an analogy between sex and language: “If sex is
like language, so is language like sex. Each has a structuring system (grammar, the body) and
a seeming infinity of possible statements one can make (sentences, sex acts)” (129). This ana-
logy connects Crosby’s past –her untroubled, pleasurable relationship to touch –to her present
and future –a more complicated, unsure relationships to touch. The analogy is not exact, but
approximate: “Most importantly for me, sex and language are both alive and enlivening, and
link the life I’ve lived already to the living that opens before me” (129). Touch is integral to this
link, a remaking which is both physical and discursive.
Crosby depends on rhetorical figures such as metaphor and analogy to explore both her new
relationship to touch and her evolving relationship to language. Figures invite departures from
the norm in ways that keep bodies and language inextricably connected. The Roman rhet-
orician Quintilian makes explicit connections between the figures and bodies that invite this
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Shannon Walters
potential when he uses the term figura to refer to “any deviation, either in thought or expres-
sion, from the ordinary and simple method of speaking, a change analogous to the different
positions our bodies assume when we sit down, lie down, or look back…Let the definition
of a figure, therefore, be a form of speech artfully varied from common usage” (IX, i, II). The
figures, according to Quintilian, are ways for language to depart from the norm. Bodies, in all
their potential ways of reconfiguring themselves, are the models for imagining this departure.
Crosby exercises this definition of figures in her approach to strained metaphor and analogy.
Since paralysis has altered her sense of touch, Crosby necessarily must alter her approach to
language. Rather than searching for the “right” metaphor, Crosby uses the “strained” metaphor
of stone butch because its inexact approximation best describes her new, evolving approach to
touch and sex. She experiences frustration with touch following her accident and while some
of the sense of touch is available to her, it is much changed. The strain of her metaphor reflects
the strain of her life experience, as she searches for new language. In the spirit of Quintilian’s
definition of figura, Crosby’s new embodiment –her “different position” –leads her to experi-
ment with language.
In her recognition of language and sex as both “alive and enlivening,” Crosby identifies a
form of what is understood in linguistics as the animacy of language (129). Linguistic anthro-
pologist Michael Silverstein, using evidence from a wide range of languages, posits “animacy
hierarchies” as a crucial intersection of grammar and meaning. Queer theorist Mel Chen
extends the concept of animacy to encompass a “set of notions” including “a quality of agency,
awareness, mobility and liveness” (2) beyond what is traditionally understood as “life” or “living
matter.” The implications of this grammar are wide-ranging and have the “capacity to rewrite
conditions of intimacy” (3). For Crosby, writing about how a change in touch changes person-
to-person intimacy with a sexual partner, the animacy of language is embodied in tropes which
operate as equipment for living in that they initiate a turn towards difference, transition and
acceptance. Crosby and Janet explore the full range of the liveliness of both language and sex by
attending to the challenges and difficulties of this turn, with imprecise but necessary language.
Place: where writing starts
For Eli Clare, the concept of animacy operates in a more diffuse register, involving liveliness
in an environmental context, including living and nonliving matter. In both of his memoirs,
Clare, like Crosby, draws attention to the difficulty of writing about disability. In the final pages
of Exile and Pride (1999), Clare notes this struggle, explaining that “to write about any aspect
of identity, any aspect of the body, means writing about this entire maze” of gender, disability,
class, abuse, sexuality and race (123). Clare identifies as white, disabled and genderqueer, often
working through these tangled intersections through writing. Amid this difficult writing pro-
cess, Clare asks, “Where to start?” and suggests an environmental image suffused with a tactile
sense of bodies in motion and connection: “possibly with the memory of how my body felt
swimming in the river, chinook fingerlings nibbling at my toes” (123).
Clare pairs this technique of starting with question with a personal memory of a conversa-
tion with his mother, asking her, “Am I feminine?” (124). The question is vague and unanswer-
able in Clare’s memory: “maybe I meant: ‘What am I, a girl, a boy, something else entirely?’ ”
(124). The questions provoked by the concept of animacy raise similar productive uncertainties
regarding definitions. According to Chen, using the idea of animacy instead of the concept of
life “helps us theorize current anxieties around the production of humanness in contemporary
times, particularly with regard to humanity’s partners in definitional crime: animality (and its
analogue or limit), nationality, race, security, environment, and sexuality” (3). Clare’s question is
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enlivened but not answered by what Chen characterizes as humanity’s definitional partners, par-
ticularly in relation to place. Bookending his initial of where to start, he expands his memory of
swimming in a final chapter, the culmination of a pattern of landscape-based writing throughout
the memoir. Contrasting the meaning of terms like “feminine” and “masculine,” which, Clare
explains, are, “words [that] were empty signifiers, important because I knew I was supposed to
have an attachment to femininity,” he elaborates on his strong connection to place:
At 13 my most sustainable relations were not of the human world. I collected

stones…and kept them in my pockets, their hard surfaces warming slowly to my
body heat. Spent long days at the river learning what I could from the salmon, frogs,
and salamanders. Roamed the beaches at high tide and low, starfish, mussels, barnacles
clinging to the rocks. Wandered in the hills thick with moss, fern, liverwort, bramble,
tree. Only here did I have a sense of body…And now 20 years later, how do I reach
beneath the skin to write, not about the stones, but the body that warmed them, the
heat itself? (124)
Whereas words like “masculine” and “feminine” lack signification for Clare, his environment is
abundant with meaning, forming an alternative grammar. A wide variety of living and nonliving
matter animate this environment, and facilitate writing more fluidly than empty signifiers.
Echoing his earlier question about how to start writing, Clare turns to felt experiences in the
environment to “reach beneath the skin to write” about a sense of body (124). Connecting
body and memory, Clare enacts what composition theorist Nedra Reynolds calls the “geog-
raphies of writing.” Also known as the “where of writing,” this includes “not just the places
where writing occurs, but the sense of place and space that readers and writers bring with
them to intellectual work of writing, to navigating, arranging, remembering, and composing”
(176). In short, place can motivate a sense of urgency in writing, even in difficult compositional
moments. A tactile sense of warmth kindles this exigency for Clare, as he draws upon the
warmth between his body and the stones he collects. By asserting “only here did I have a sense
of body,” Clare demonstrates how crucial environment is to his difficult writing process and his
evolving definition of gender and sexuality.
As Reynolds’ distillation of the “where of writing” suggests, Clare’s question of where to
start writing is a familiar one for many composers (176). Difficulty with the start of writing is
typically understood as writer’s block. Writer’s block assumes, however, that the problem with
composing is one to be solved and the obstacle is simply to be overcome. Significantly, Clare
does not use his strong connection to the environment to attempt to solve the problem of his
writer’s block. Similarly, the “where” of his writing does not answer his questions regarding his
gender and sexuality. Rather than posing the difficulty he faces in starting to write as an obstacle
to be overcome, or his sexuality as a question to be answered, Clare turns this ambiguity into a
source of purpose. The living and nonliving matter in the environment –stones, salamanders,
moss –animate his writer’s block without solving the problem of it, as Clare returns to the
question of how to write his body.
In Brilliant Imperfection (2017), Clare continues his work with “the where of writing” to pose
difficult questions about the concept of cure from a disability and genderqueer perspective.
Situating cure as the pervasive belief that disabled bodies and minds are broken and in need
of repair, but also exploring the allure and potential of cure, Clare uses life writing and critical
analysis paired with creative codas to deepen and enrich complex contradictions. The codas,
dedicated to objects in the natural world such as “stones,” “shells,” “hermit crabs,” and “myrtle,”
show Clare using his environment to animate critical questions. In one chapter, he meditates
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on a frog pond that used to exist near his house, but disappeared after new construction, and
reminisces about a friend “whose body-mind has been shaped by military pollution,” asking,
“how do we witness, name, and resist the injustices that reshape and damage all kinds of body-
minds –plant and animal, organic and inorganic, nonhuman and human –while not equating
disability with injustice” (60)? Resolving this contradiction is not the goal for Clare, who desires
to “think about how we might bear witness to body-mind loss while also loving ourselves just
as we are right now” (60). Clare wrestles with this question by inviting complexity and contra-
diction, without resorting to easy solutions.
In Brilliant Imperfection, Clare’s earlier questions regarding femininity and masculinity develop
into the desire to transition from “butch dyke to genderqueer living as a white man” (177).
Detailing his gender transition, Clare once again invites complexity and contradiction, echoing
his earlier approach to cure and the frog pond to pose a difficult question. “How can I reconcile
my lifelong struggle to love my disabled self exactly as it is with my use of medical termin-
ology to reshape my gendered and sexed body-mind” (175)? The only answer for Clare is “I’m
searching for a messier story” (175). This messy story means asking questions that do not have
an answer. It also necessarily includes attention to the places of writing, as Clare carries with
him a sense of purpose regarding the where of writing to locate questions that connect person
(himself), place (his environment) and thing (cure).
Thing: grammars of materiality
In the last chapter of Animacies (2012), Chen moves from a theoretical discussion of the metaphors
surrounding environmental toxicity and toxins to an autobiographical account. Ambivalent,
Chen acknowledges that this personal angle feels like “riskier terrain,” since “academics are
often trained to avoid writing in anything resembling a confessional mode” (197). Pushing
through these mixed feelings, Chen describes experiences associated with a diagnosis of mul-
tiple chemical sensitivity and heavy metal poisoning, writing, “I theorize toxicity as it has pro-
foundly impacted my own health, my own queerness, and my own ability to forge bonds,”
including “my relationship to intimacy” (197). Like Crosby and Clare, Chen draws attention to
the difficulties of writing about disability and its intersections, highlighting this struggle rather
than avoiding it. In an effort to navigate this difficulty, Chen explicitly addresses readers: “Let
me get specific and narrate what my ‘toxic’ cognitive and bodily state means” and describes a
day of “relative well-being” that involves a walk around the neighborhood (198).This rhetorical
strategy emphasizes risk while also involving audience, including them in an experiment, both
on foot and in writing.
This rhetorical decision blends a geography of writing with a rhetoric attuned to the study
of things, as Chen attempts to access a grammar with which to describe their condition. Chen
explains that because of their response to toxins they don’t usually go places “on foot,” but
a recent move makes them eager to explore and their body temporarily forgets “some of its
belabored environmental repertoire, its micronarratives of movement and response…of provoca-
tion and injury” (198). As they navigate the neighborhood, these forgotten adjustments become
necessary as Chen realizes they should have brought their chemical respirator. Chen describes
how they scan fellow pedestrians, attempting to avoid potential wearers of scents and sunscreen.
Walking without a facial mask, Chen recalls the tightly orchestrated movements they must per-
form when walking and talking with a smoker: “sometimes I had no breath stored and had to
scoot ahead to a clearer zone while explaining hastily ‘I can’t do the smoke’ ” (199). Reflecting
self-consciously, Chen examines their word choice: “Indeed the grammatical responsibility is
clear here: the apologetic emphasis is always on I-statements because there is more shame and
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implicature (the implicit demand for my interlocutor to do something about it) in ‘the smoke
makes me sick,’ so I avoid it” (199).
Chen is attempting to find a grammar for the experience of walking and talking with a
chemical sensitivity, reaching toward language that reckons with complex questions regarding
responsibility and interdependency. Like Crosby and Clare, Chen does not feel that there are
readily available grammatical constructions from which they can draw to describe their experi-
ence. The awkward construction of “I can’t do the smoke” reflects Chen’s complicated negoti-
ation regarding how to interact with able-bodied people in a public space that is not hospitable
to disability. Chen describes this feeling in tactile terms as “the friction of my dependence…
against others’ independence” (199), a formulation that shows them struggling with how to
assign responsibility in new and complex situations involving interdependency.
A grammar of things, attentive to materiality both present and not, structures this experi-
ence for Chen. With the high visibility of an object like a mask or a respirator, an awkward
statement of “I can’t do the smoke” may not be necessary, but different social negotiation would
ensue. Chen meditates on how wearing the chemical-filter mask affects their interactions with
people in daily exchanges, for example, at a craft store, or in public life, particularly as a raced
and gendered body. The mask forces a disability “coming out” akin to discourses of gay, lesbian
and transgender sexuality, while also, in Chen’s case, interpolating them as a “walking symbol
of a contagious disease like SARS,” with the assignation of “SARS!” being directed to them in
public space (200). In short, the mask or respirator animates life in public space differently for
Chen and sometimes divisively.
By meditating on the complex inter-subjectivities and interdependencies afforded by the
chemical respirator and mask –and lack thereof –Chen is engaging with equipment for living
a disabled life in a complex public space. One way to understand this equipment for living is
through the rhetorical study of objects and things. Recent advances in areas of new materialism,
object-oriented ontology and visual studies attempt to decenter human experience, offering a
richer, more varied understanding of the role of things in the world (Rickert; Gries; Hesford,
Licona and Teston). From a writing and rhetorical perspective, these inquiries have important
implications for how writers compose in both public and private spaces. As Scot Barnett and
Casey Boyle explain, “understanding things as active agents rather than passive instruments or
backdrops for human activity requires different orientations on rhetoric, orientations inclu-
sive of human beings, language, and epistemology, but expansive enough to speculate about
things ontologically” (2). When Chen draws attention to the awkward grammar of “I can’t do
the smoke,” they are experimenting with this different orientation in a meta-compositional
moment blending rhetoric and ontology. As Crosby’s experience also shows, highlighting awk-
ward metaphor is a rhetorical orientation toward the process of composing in uncertain situ-
ations. For Chen, this experimentation also involves working through a richer approach to the
categorical dimensions of things in the role of assistive devices as objects of consequence to their
being in the world. Composing with ontological uncertainty regarding the assistive objects in
their life, Chen is exploring something akin to Martin Heidegger’s definition of “thing,” which
draws on the Old High German word Ding as “a gathering to deliberate on a matter under dis-
cussion, a contested matter” (172).
Chen’s meta-compositional life writing negotiates this uncertainty regarding things. As
Barnett and Boyle describe, “ontology stresses relational being” and is “an ongoing negoti-
ation of being through relations among what we might, on some occasions, call human and/
or nonhuman” (8–9). For Chen, relational being is the basis for a shifting approach to ontology.
Signaling to their readers that it’s time “to conclude this narration” of a day in the life of their
experience, Chen turns to a final set of unanswerable questions. Returning home to lie on the
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couch, unable to rise, Chen describes their lover arriving to greet them, to which they can only
grunt in reply.Their lover puts her hand on Chen’s arm, but Chen flinches away, unable to look
or speak. Chen reflects, “What is this relating?” and writes, “In such a toxic period, anyone or
anything that I manage to feel any kind of connection with, whether it’s my cat or a chair or
a friend or a plant or a stranger or my partner, I think they are, and remember they are, all the
same ontological thing” (202). Regarding their lover, Chen attempts to come to terms with a
radically different approach to intimacy: “I am shocked when her body does not reflect that
I have snuggled against it earlier, when the snuggling and comforting happened in the arms and
back of my couch” (202). A nontraditional sense of touch blurs Chen’s bodily boundaries as well
as the boundaries of the nonliving objects, things and materials around them. Chen experiences
the body and touch of their lover, but after recovery, knows that this sensation was felt in the
arms and back of the couch. This confusion leads Chen to reconsider animacy and intimacy,
calling their experience “an intimacy that does not differentiate, is not dependent on a heart-
beat” (203). This intimacy is facilitated by a shared sense of touch as Chen asserts, “The couch
and I are interabsorbent, interporous, and not only because the couch is made of mammalian
skin” (203). Touch between human and nonhuman objects, for Chen, generates “intimacies
that are often ephemeral, and they are lively” (203). The people, places and things that populate
Chen’s life and life writing about disability challenge existing understandings of what counts
as “lively,” suggesting new combinations and contingent associations, while acknowledging the
radical uncertainty this occasions.
Writing sex, gender and disability: remarkable grammars

In her exploration of sex and disability, Margrit Shildrick draws from Gilles Deleuze and Felix
Guattari’s notion of bodies as assemblages “that include not simply human beings but animal
and mechanistic components of all kinds” to theorize a model of sexuality for disabled people
in which “embodied desire enacts all sorts of differential couplings, with no single privileged
form” (165–166). This radical destabilization is complex and productive, but Shildrick suggests
a future in which it becomes somewhat commonplace. “The reliance of many disabled people
on assistive or prosthetic devices, for instance, or the support of other human bodies, to facili-
tate sexual encounters becomes thus unremarkable” (166). Crosby, Clare and Chen, with
their embodied connections to other people, places and things, certainly enact a form of this
desire based on motley couplings. However, each writer, rather than making their experience
unremarkable, instead underscores the complexities and contradictions of their experience,
suggesting that attention to this complexity in writing remains important.
In this effort, Crosby, Clare and Chen are continuing an ongoing discussion and project in
disability studies that focuses on the importance of naming oppression and marking the difficul-
ties of disability experience. In 1992, disability activist Anne Finger asserted, “Sexuality is often
the source of our deepest oppression; it is also the source of our deepest pain. It’s easier for us
to talk about –and formulate strategies for changing –discrimination in employment, educa-
tion, and housing than to talk about exclusion from sexuality and reproduction” (9). Finger’s
identification of the challenge of talking (and writing) about disability and sexuality is cru-
cial because it recognizes the rhetorical and compositional complexity at work in life writing
about disability, a complexity that remains nearly thirty years later. When Crosby discusses the
strained metaphor in her writing, when Clare draws attention to his writer’s block and when
Chen acknowledges the risky terrain of their autobiographical writing, each explicitly marks
the challenges of disability life writing when complex issues of gender and sexuality are at
stake. This meta-compositional decision to explicitly acknowledge and record difficulty rather
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than ignore or edit it shows disabled life writers willing to work with the risks and rewards of
writing about sex and gender. Instead of opting for clarity, coherence or tight logical arguments,
these life writers play with the rhetorical dimensions of language to explore and experiment.
The grammar of this life writing delights in awkwardness, strain and risk. In this way, life
writers such as Crosby, Clare and Chen also contribute to what Hall identifies as the need to
examine the “realness of the body” at the intersection of the study of disability and gender. By
paying attention to the realness of writing –the messy parts of composition, the inexactness
of language and the challenges of communicating –disabled life writers attest to the complex
interconnections between life and writing.
Documenting the realness of writing also advances an important project in queer theory and
disability studies focused on a future of possibility. Crip queer theorists Robert McRuer and Abby
Wilkerson’s effort to “desire disability” seeks to support “practices that would work to realize a
world of multiple (desiring and desirable) corporealities interacting in nonexploitative ways” (14).
To desire disability resists the normative impulse to devalue or ignore disability. For McRuer and
Wilkerson, this means that “another world can exist in which an incredible variety of bodies
and minds are valued and identities are shaped, where crips and queers have effectively (because
repeatedly) displaced the able-bodied/disabled binary” (14). The practice of writing the realness
and messiness of disability experience, particularly in contexts of interdependency, is crucial to
this crip queer future, which does not depend on any singular understanding of what counts as a
“real” body or “real” writing.The people, places and things that animate the life writing of Crosby,
Clare and Chen demonstrate a version of this world, with a variety of bodies and corporealities
interacting in generative ways. Rhetorical touch is one way of recognizing and valuing this inter-
active corporeality; its grammar is something to be remarked upon. By marking and remarking
the difficulties and possibilities of disability experience, disabled life writers demonstrate how the
diverse realness of the body is reflected in the realness of writing, a mutually constitutive relation-
ship that necessarily includes the widest possible world of people, places and things.
Works cited
Barnett, Scot and Casey Boyle, eds. Rhetoric, Through Everyday Things. Tuscaloosa: The University of
Alabama Press, 2016.
Burke, Kenneth. “Literature as Equipment for Living.” The Philosophy of Literary Form. Third Edition.
Berkeley: University of California Press, 1973.
Chen, Mel Y. Animacies: Biopolitics, Racial Mattering, and Queer Affect. Durham: Duke University Press, 2012.
Clare, Eli. Exile and Pride: Disability, Queerness, and Liberation. Cambridge, MA: South End Press, 1999.
———. Brilliant Imperfection: Grappling with Cure. Durham: Duke University Press, 2017.
Corker, Mairian and Sally French, eds. Disability Discourse. Buckingham: Open University Press, 1999.
Couser, G. Thomas. Signifying Bodies: Disability in Contemporary Life Writing. Ann Arbor: University of
Michigan Press, 2009.
Crosby, Christina. A Body, Undone: Living on After Great Pain. New York: New York University Press, 2016.
Deleuze, Gilles and Felix Guattari. AThousand Plateaus: Capitalism and Schizophrenia. Minneapolis: University
of Minnesota Press, 1987.
Finger, Anne. “Forbidden Fruit.” New Internationalist no.233, 1992, pp.8–10.
Fries, Kenny. “Introduction.” Staring Back The Disability Experience from the Inside Out, ed. Kenny Fries.
New York: Plume Books, 1997, pp.1–10.
Gries, Laurie. Still Life with Rhetoric: A New Materialist Approach for Visual Rhetorics. Utah State University
Press, 2015.
Hall, Kim Q. “Gender.” Keywords for Disability Studies, ed. Rachel Adams, Benjamin Reiss and David Serlin.
New York: New York University Press, pp.89–91.
Heidegger, Martin. “The Thing.” Poetry, Language, and Thought, trans. Albert Hofstadter. New York: Harper
and Row, 1971.
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Hesford, Wendy S., Adela C. Licona and Christa Teston. Precarious Rhetorics. Columbus: Ohio State
Kaufman, Miriam, Cory Silverberg and Fran Odette. The Ultimate Guide to Sex and Disability: For All of Us
Who Live with Disabilities, Chronic Pain, and Illness. San Francisco: Cleis, 2003.
Kuppers, Petra. “Toward a Rhizomatic Model of Disability: Poetry, Performance, and Touch.” Journal of
Literary and Cultural Disability Studies, vol.3, no.3, 2009, pp.221–240.
McRuer, Robert and Abby Wilkerson. “Introduction.” Desiring Disability: Queer Theory Meets Disability
Studies. Special Issue of GLQ: Journal of Gay and Lesbian Studies, vol.9, no.1–2, 2003, pp.1–24.
McRuer, Robert and Anna Mollow. Sex and Disability. Durham: Duke University Press, 2012.
Quintilian. Institutes of Oratory, trans. John Selby Watson. London: George Bell & Sons, 1892.
Reynolds, Nedra. Geographies of Writing: Inhabiting Places and Encountering Difference. Carbondale: Southern
Illinois University Press, 2004.
Rickert,Thomas. Ambient Rhetorics: The Attunements of Rhetorical Being. Pitssburgh: University of Pittsburgh
Press, 2013.
Shakespeare, Tom, Kath Gillespie-Sells and Dominic Davis. The Sexual Politics of Disability: Untold Desires.
New York: Cassell, 1996.
Shildrick, Margrit. “Sex.” Keywords for Disability Studies, ed. Rachel Adams, Benjamin Reiss and David
Serlin. New York: New York University Press, pp.164–166.
Silverstein, Michael. “Hierarchy of Features and Ergativity.” Grammatical Categories in Australian Languages,
ed. R. M. Dixon. Canberra: Australian Institute of Aboriginal Studies, 1976, pp.112–171.
Walters, Shannon. Rhetorical Touch: Disability, Identification, Haptics. Columbia: University of South Carolina
Press, 2014.
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29
PSYCHOGRAPHICS
Graphic memoirs and psychiatric disability
Introduction: disability studies meets graphic medicine

The rapidly growing genre of autobiographical comics and graphic memoirs about illness offers
a rich and largely untapped source of materials and ideas for disability studies scholars.Works like
Cece Bell’s El Deafo (2014), Peter Dunlap-Shohl’s My Degeneration: A Journey Through Parkinson’s
(2015), Marisa Acocella Marchetto’s Cancer Vixen (2006), John Porcellino’s Hospital Suite (2014),
and David Small’s Stitches (2009) are just a few of the recently published, book-length first-
person accounts of disability and illness. Other graphic memoirs like David B.’s Epileptic (2005),
Joyce Farmer’s Special Exits (2010), Sarah Leavitt’s Tangles: A Story about Alzheimer’s, My Mother,
and Me (2012), and Aneurin Wright’s Things to Do in a Retirement Home Trailer Park (2015)
take on the shared family experience of disability, illness, and dying. Emerging out of the gen-
eral academic field of comics studies, graphic medicine has become a specialized interdiscip-
linary area focused precisely on these types of texts. The collectively-authored Graphic Medicine
Manifesto (2015) defines the field broadly as “the intersection of the medium of comics and
the discourse of healthcare” (1) and as “a movement for change that challenges the dominant
methods of scholarship in healthcare, offering a more inclusive perspective of medicine, illness,
disability, caregiving, and being cared for” (2). The tenets of graphic medicine, and specifically
this challenge to dominant modes of scholarship, provide a welcoming space for critiques of
healthcare from a disability studies perspective. Furthermore, with its interdisciplinary ensemble
of artists, physicians, nurses, and academics, graphic medicine also offers the potential for
coalition-building and paradigm change among patients, caregivers, and healthcare workers.
In parallel with the growth of graphic medicine, there is now an increasing attention to
comics and graphic narratives among disability studies scholars and disabled writers and artists.
In 2013 Syracuse University’s Diane Wiener and Rachael Zubal-Ruggieri created the bian-
nual “ ‘Cripping’ the Comic Con” symposium, or Crip Con, a disability-positive riff on the
original Comic Con. José Alaniz recently published his groundbreaking Death, Disability, and
the Superhero: The Silver Age and Beyond (2014), a culmination of years of research focusing on
disability in DC and Marvel comics. In 2016 the collection Disability in Comic Books and Graphic
Narratives edited by Chris Foss, Jonathan W. Gray, and Zach Whalen became the first anthology
to focus on disability in comics, and Leroy F. Moore’s Krip-Hop Nation Graphic Novel (2019)
was recently published by Poor Press. As graphic memoirs are finding their way into disability
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studies, more college classrooms are engaging with graphic memoirs about disability: MLA’s
new Approaches to Teaching Bechdel’s Fun Home (2018) –the blockbuster graphic memoir that
has been adapted into a Broadway musical and adopted as required college reading –includes
Cynthia Barounis’s chapter on “Teaching Fun Home as a Disability Memoir.”
Building on these new areas of research, this chapter is at the intersection between dis-
ability studies and graphic medicine. A brief note about the language used here is necessary
first. In its early days disability studies scholarship focused more often on physical disability,
and in recent years disability scholars working on mental illness have grappled with the best
ways to describe their distinct concerns and their relationship with disability studies at large.
Disability studies of mental illness also exist in a simultaneous tension and alliance with the
field of mad studies (see Brewer). In Mad at School (2011), Margaret Price follows Cynthia
Lewiecki-Wilson in using the phrase “mental disability” to cast a wide net, making room for
a coalition of people with psychiatric and cognitive disabilities (17), and in turn Sami Schalk’s
Bodyminds Reimagined (2018) deploys Price’s work on bodymind to stress the “inextricability
of mind and body,” especially in considerations of race and disability (5). With these larger
concepts in mind, this chapter focuses more narrowly on “psychiatric disability,” which pur-
posefully makes a more explicit connection to medicine and systems of healthcare. My use of
the phrase “psychiatric disability” is meant to highlight a disability experience that is inex-
tricably entwined with the medical practice of psychiatry and its understandings of madness/
mental illness/mental health.1 The sections that follow focus specifically on graphic memoirs
about mental distress, beginning with what many consider the very first autobiograph-
ical comic, Justin Green’s Binky Brown Meets the Holy Virgin Mary (1972), which describes
Brown’s experience living with obsessive compulsive disorder (OCD). OCD, according to
the National Institute of Mental Health, is a chronic disorder in which a person has uncon-
trollable, recurring thoughts (obsessions) and behaviors (compulsions) that the person feels
the urge to repeat, which may interfere with daily life, work, and relationships (“Obsessive-
Compulsive Disorder”). By reading Binky Brown as an OCD disability memoir, I argue that
psychiatric disability and the empathetic treatment of mental health issues is foundational
to the genre of graphic memoir. Green’s influence and the central role of mental health in
graphic memoir is also evident in the contemporary “Prisoner on the Hell Planet” (1973),
Art Spiegelman’s comic about his mother’s suicide which was later inserted into his Pulitzer-
Prize-winning autobiographical work about Holocaust trauma, Maus (1991). I conclude by
juxtaposing this earlier work by Green and Spiegelman with more recent graphic memoirs
about psychiatric disability, including Ellen Forney’s Marbles: Mania, Depression, Michelangelo,
and Me (2012) and Ian Williams’s The Bad Doctor: The Troubled Life and Times of Dr. Iwan James
(2015).
“A vast chain of suffering”: Binky Brown and the disability origins

of the graphic memoir
Justin Green’s Binky Brown Meets the Holy Virgin Mary (1972), in which Green’s avatar Binky
struggles with obsessive thoughts about defiling the Virgin Mary, is widely acknowledged as the
first autobiographical comic. Yet it has only fairly recently been read as a psychiatric “graphic
pathography” (Green and Myers 574). The psychiatric disability content of Green’s narrative is
equally as important and just as revolutionary as Green’s autobiographical innovations. In the
afterword of the 2009 reprint of Binky Brown, Green himself resists being cast as the “father
of autobiographical comics” by others and instead identifies himself as the father of another
tradition: “Ironically, I have to give myself the one accolade I truly deserve: that Binky Brown
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Psychographics
Meets the Holy Virgin Mary anticipated the groundswell in literature about obsessive compulsive
disorder by almost two decades” (62). Green explicitly places his text in a canon of disability
literature.
Binky Brown has always been replete with disability content, even before Green’s later
medico-psychiatric reframing of his work. For example, the inside cover of the original 40-
page comic introduces Green’s story by emphasizing his mental distress and explicitly calling
to a community of fellow neurotics to unite: “If all we neurotics were tied together we would
entwine the globe many times over in a vast chain of common suffering” (all emphases
in quotations are from the original text). Green’s purpose in Binky Brown is in part thera-
peutic: “O, my readers, the saga of Binky Brown is not intended solely for your enter-
tainment, but also to purge myself of the compulsive neurosis which I have served since
I officially left Catholicism on Halloween, 1958” (inside front cover). Here Green neatly
combines the private and the public: his personal cathartic purge is simultaneously a com-
munal performance. His evocation of his audience as fellow sufferers combined with the public
testimony of his private experience embodies a disability politics, in which impairment’s social
component is foregrounded.
Binky’s story begins in childhood when he accidently breaks a statuette of the Virgin
Mary while playing inside his house. He later wonders if the accident is caused by stepping
on a crack in the sidewalk, reminiscent of the childhood verse, “Step on a crack /Break your
mother’s back.” Binky comforts himself with the knowledge that at least nothing bad has
happened to his mother, while simultaneously imagining her body being crunched under the
wheels of a car (Figure 29.1).This is the first of a series of superstitious thoughts that will later
overwhelm him, and it is significant for the way in which Binky’s mother is both present and
Figure 29.1 Binky Brown, panel from page 2. Description: Binky walks down the sidewalk past a car
and says to himself, “At least nuthin’ bad happened to Mom!” Meanwhile, in a thought bubble above his
head, he imagines a car running over his mother’s body and a loud “CRUNCH” sound.
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symbolically displaced by the Madonna, as well as the invocation of bodily harm, brokenness,
and disability. The comic then depicts other scenes that are similarly linked to his obsessive
thinking and compulsive behaviors: for example, young Binky is immobilized when he feels
compelled to sit on the grass to protect it from the rain (2), and as a “tot” Binky is so scared
at night that he habitually strikes his head against his headboard until he sees stars (3). He
develops other compulsive behaviors that are hallmark symptoms of OCD including “a spe-
cial way of going down his front stairs” (22). If Binky makes an error in these choreographed
steps he is obligated to repeat them over and over again until he has executed them per-
fectly. These ritual behaviors are reinforced by the ritual penances he performs as a Catholic,
such as saying the rosary. Binky becomes preoccupied with sinning and develops a mantra,
“noyatin” –a contracted, nonsensical incantation of his desire to avoid sinful thoughts –
that he repeats for relief throughout the day (28). All of these relatively minor examples are
presented as precursors to the central obsession that will plague Binky later: the fear that he
is sexually defiling the Virgin Mary.
Binky’s Virgin Mary obsession takes a form that is in keeping with an artist’s visual-
spatial thinking: “Binky Brown,” Charles Hatfield explains, “visualizes a world of grid-like
precision, in which invisible vectors of sin crisscross the landscape” (132). The sexually-
preoccupied pubescent Binky imagines that his penis projects vectors and that he must
prevent the linear trajectories of these vectors from intersecting with images of the Virgin.
Eventually penis rays emit from other phallic objects: his hands, feet, footprints, etc. Binky
develops elaborate routines in order to avoid pointing these rays at churches and statues of
the Virgin Mary. Even though Binky realizes that the rays are not real, he is nevertheless
compelled to abide by their delusional logic: as Green writes, “The funny thing was that
the more vehemently he denied the existence of the rays, the more real they became. All
rays were equally potent, too. Penis = hands = feet” (32). His thoughts become increasingly
pervasive and disrupting:
Now even common objects turn into peckers capable of beaming out the hated and
feared rays. Binky went through each day from one crisis to the next –trying to mold
the unwieldly living world into a “safe” mechanical scheme by changing the direction
slightly of whatever object happened to be casting a ray. Since this was a full-time
occupation, his grades started to slip. (33)
After 12 years of living with these oppressive thoughts, Binky finally finds relief by buying mul-
tiple miniature Virgin Mary statues, exposing himself, and then smashing them (40). The small
statues themselves are a mass, mechanically-produced repetition, an OCD-type of iteration.
Their ritual destruction breaks the chain of obsessive thinking that has bound Binky.
Binky Brown ends with a page that promises “$5,000 worth o’ psychiatric advice for a mere
50¢!” in which Green advises readers to let intrusive thoughts pass through their minds “like so
many charms on a bracelet” (inside back cover). The trick, Green reveals, is to be able to move
on to the next thought, rather than getting stuck on an obsessive idea. The sequential nature of
these thoughts, like charms on a bracelet or beads on a rosary, are also like the panels in a comic
and like the vast chain of suffering or the common experiences uniting disabled people. Even
though Green won’t be diagnosed with obsessive compulsive disorder (OCD) until years later,
the comic is nevertheless a disability illness narrative, which visibly documents Green’s mental
suffering, his experimentation with different modes of treatment (including psychiatry and self-
medication), and his self-identification as neurotic.
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The madwoman in the comic: Binky Brown and “Prisoner

on the Hell Planet”
The fact that Binky’s freedom from obsessive thoughts is engendered by the symbolic destruc-
tion of the Virgin Mary is in keeping with the comic’s fraught depiction of women (and with the
ethos of sexism, cartoonish pornography, and violence against women in underground comix at
large). Binky is admittedly a misogynist whose views of women are a combination of “awe and
aversion”: “Let’s face it –the kid was cut out to be a misogynist –his household was swarming with
females” (7). Soon after coming to the unwelcome realization that he is a product of his parents’
sexual activity, Binky encounters a parallel primal scene of disability and female sexuality. While
Binky is exploring his friend Ralph’s house, he opens a door and sees a naked disabled woman:
It seems that Ralph had a deformed sister who was mysteriously closetted [sic] in
an upstairs room with a private nurse. Inasmuch as the tits and hair sparked his
amazement and delight the wild panic and terror of the misshapen girl left an indel-
ible mark on his psyche.
(7; Figure 29.2)
In a comic replete with fantasy visions of naked women, this scene is a rare glimpse of
a woman perceived with the senses, and she appears panicked, terrified, and seemingly not
able to communicate using spoken language. Her “misshapen” body recalls Aristotle’s vision
of woman as a deformed or mutilated man. As Rosemarie Garland-Thomson explains, “by
defining femaleness as deviant and maleness as essential, Aristotle initiates the discursive practice
of marking what is deemed aberrant, while concealing what is privileged behind an assertion
of normalcy” (20). Like Bertha Rochester, Ralph’s sister is a family secret, and for Binky Brown
she becomes an indelible mark, or stigmata, on his psyche, exposing the central location of dis-
ability and female embodiment in his story.
Similarly, a disabled woman holds a central and spectral position in Art Spiegelman’s acclaimed
graphic work Maus. A contemporary and friend of Green, Spiegelman also has lived experience
of mental illness, as his “Prisoner on the Hell Planet: A Case History” (1973) reveals. Spiegelman
even drew “Prisoner” in Justin Green’s former San Francisco cottage –the same place where
Green created Binky Brown (Breakdowns, “An Afterword” n.p.). In “Prisoner,” which was ori-
ginally published as an individual, separate work and then later embedded in Maus, Spiegelman
describes his mother Anja’s suicide and the guilt and anger he feels after her death. Hillary Chute
notes that “Prisoner” breaks “the narrative flow of Maus, interrupting its pagination, style, and
tone…registering confrontationally –and materially –the presence of the past” (206–207). And
this presence is in part an absence of the mother: “as a mise-en-abyme,” as Machteld Harmsen
writes, “ ‘Prisoner on the Hell Planet’ shows the absence of Spiegelman’s mother, which is
echoed in the bigger story in Maus” (75). Moreover, “Anja’s appearances in Maus,” Victoria
Elmwood argues, “strongly suggest that her suicide is Art’s central trauma”: “his memory of
her is disabled by the trauma of her suicide” (705; 708). The importance of intergenerational
trauma caused by the Holocaust is painfully clear in Spiegelman’s work. Anja’s suicide and
her mental health issues linger in the background and are less obvious but still significant.
Preceding the trauma of the camps, in 1938 Anja experiences a debilitating depression and
spends three months away from her children at a sanitarium in Czechoslovakia (Maus 31–36).
In “Prisoner” Spiegelman’s own time in a psychiatric institution precedes his mother’s death: as
Spiegelman emerges from the subway in the comic’s fourth panel, the top caption reads, “I was
living with my parents for the most part (as I agreed to do on my release from the state mental
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Figure 29.2 Binky Brown, panel from page 7. Binky opens a door and sees a naked woman, clutching at
her breast, saying “Yurk Yokka Yokka Ig.” In the background a nurse says, “Close that door, you!”
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hospital several months before)” (Maus 100). Nothing more is revealed about the circumstances
of Spiegelman’s own hospitalization, and although we know how Anja dies, we do not know
why: she left no note. The diagnosis of “menopausal depression” floats under his mother’s body
later on in the comic, closely followed by another possible explanation: “Hitler did it!”
Psychiatric disability and traumatic experiences are inseparable components of this part of
Spiegelman’s story, tied together in complicated ways involving Art and his mother. “Prisoner
on the Hell Planet: A Case History” begins with a photograph of Art Spiegelman as a young
boy, his mother Anja’s hand resting on his head (Figure 29.3). This gesture symbolizes the psy-
chological hold Anja has on her son: when she asks Art if he loves her, he “turned away, resentful
of the way she tightened the umbilical cord,” and he later complains that she has “shorted all my
circuits…cut my nerve endings…and crossed my wires.” In Maus, a graphic work populated by
illustrations of mice and cats, the sudden realism of the photograph is jarring and makes Anja’s
presence/absence even more startling. Dominick LaCapra describes Anja as a “phantasmic
archive” (172): the first volume of Maus ends with Art calling his father Vladek a “murderer” for
burning Anja’s notebooks (158–159). Although her story in her own words does not survive, her
depression and death haunt the text. The comic’s subtitle, “A Case History,” together with the
empty bottle of pills by the mother’s body, the background involving Art’s mental hospital stay,
his complaints of cut nerve endings, and the diagnosis of menopausal depression work to estab-
lish a psychiatric medical context, with Art’s role as prisoner/patient simultaneously evoking the
institutional setting of prison, concentration camp, and psychiatric hospital.
In these examples, Green’s Binky Brown equates the female body with monstrosity and phys-
ical/intellectual disability while endlessly displacing the mother. Spiegelman’s “Prisoner” locates
Figure 29.3 “Prisoner on the Hell Planet,” title panel. Description: a drawn hand holds a photograph of
Art Spiegelman as a child with his mother who is wearing a bathing suit, captioned “Trojan Lake, N.Y.,
1958.” Next to the photo, the title text reads: “Prisoner on the Hell Planet: A Case History.”
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psychiatric disability in the tightened umbilical cord connecting the bodies of both mother
and son, and the final cut of that cord. In both graphic texts, women’s bodies help to carry the
weight of disability representation for their authors.
Green’s medico-psychiatric reframing of Binky Brown

In the Afterword of the 2009 reprint of Binky Brown, written later after Green has lived with
obsessive thoughts for decades, Green engages in a remarkable reframing of his influential work.
Green discusses the creation of Binky Brown and its aftermath, which includes both the critical
importance of his work to other artists and Green’s ongoing efforts to understand and master
his obsessions. In this new historical narrative, Binky Brown’s neurosis turns into Justin Green’s
OCD. Binky’s oppressive Catholic worldview transforms into Green’s creative engagement with
Jungian psychology/spirituality and modern medical technologies.
In the original Binky Brown, Green includes a laundry list of methods he has tried in order
to purge his Madonna obsession (35). On one page, a series of 16 equally-sized boxes contains
illustrations of the “various avenues of experiment which Binky resorted to with a curiosity
borne of frustration and despair,” including beer, gambling, speed, crime, masochism, Hesse
novels, obsessive love, protest, yoga, zen, pot, mysticism, psychiatry, painting, the blues, and
acid (35). Only one “experiment” seems to help, and it isn’t conventional psychiatry. As Binky
walks through town during an acid trip, the LSD wears off and he has the insight that will
finally free him: the Virgin Mary is nothing but a bogeyman of his own making (36–37). The
comic ends with his ceremonial destruction of a dozen small Virgin Mary figures.
Yet 37 years later in the Afterword, Green describes the meta-version of this process. Insights
from his study of Carl Jung’s Man and His Symbols (1964), a work filled with iconography,
helped him create the comic:
In my youthful vision of Jung’s teachings, that bizarre embodiment of my neurosis –

the rays which emanated from all appendages –were not a symbol of mental illness; it
was just that I had a divining rod that found sexual water in holy places. (56)
Jung frees Brown to explore the symbolism of his neurosis outside of Catholicism and also out-
side of a pathologizing and reductive mental illness framework:
On one of the final sessions with a psychologist in the mid-’60s, I displayed the new
purchase [Man and His Symbols]. After slow deliberation, he said,“It won’t help,” I broke
down in tears, and for hours afterwards walked in a daze, boarding the wrong train
with my contraband –feeling that after a glimmering of salvation I was once again
consigned to a life of superstition and compulsion. I was utterly alone. This vantage
point paradoxically gave me the strength and perspective to create my doppelganger
dummy. In Jung’s parlance, Binky was my “Shadow,” my hidden self, which had bene-
ficial as well as destructive potential. Without the idea that the beliefs and rituals of
my childhood faith had other possibilities beside their official canonical context, there
would simply have been no Binky Brown. (57)
Jung enables him to recontextualize his symptoms/experience. While Jung himself is never
mentioned in Binky Brown, later in this essay Green explicitly identifies his use of tarot card
images on the front and back covers as part of his “homemade Jungian research” (57).
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Psychographics
While this description pits professional mental health care (the Jung-rejecting psychologist)
against Green’s self-help approach, Green now embraces medical explanations of his neuroses:
I must look elsewhere [other than the Catholic Church], most notably in digital MRI
scans, for the source of my true suffering. It was not until the late ‘80s that indisputable
medical research and brain imaging revealed that obsessive compulsive disorder is an
inherited condition contingent on a chemical imbalance in the brain. (61)
Green’s attraction to the visual arguments of brain imaging, in which scans are manipulated and
interpreted via theories of the brain, is significant and seems a modern analog to his attraction
to the highly visual components of Jung’s work on symbols. Although Green accepts medical
explanations of OCD, he has no patience for the bureaucracy of the public health care system
and he does not find relief in pharmaceutical interventions. For example, in the midst of a six-
week trial of medication he finds that his “symptoms were slightly diminished, yet so was my
joy” (62). Nevertheless he speculates,“had I persevered with the medical route I may have found
a greater sense of peace and equanimity…but I abandoned this route. My angels apparently
need devils” (62). While he abandons medication, Green still has a Jungian-inspired attraction
to the possibilities of modern medicine:
I chuckle at the memory of my old shrink’s summary dismissal of Man and His
Symbols –“It won’t help.” Jung beams out from his spot on my personal Mt. Rushmore.
Still crazy after all these years, unmedicated (except for coffee), happy and grateful just
to be alive, I think there is another possibility: brain imaging technology brings us
closer to his vision of alchemy, the union of psyche and matter, than ever before. (63)
In the end, Green posits that the advances of modern psychiatry will lead us to ancient truths,
and he imagines a future in which medicine and his Jungian-inspired spirituality merge. Jung
was, after all, a psychiatrist with his own lived experiences of mental distress.
Conclusion: re/visions of diagnoses
Disability, Jay Dolmage and Dale Jacobs write, “often seems to demand to be defined by a med-
ical professional in films, novels, and comic narratives”: “disability needs to be ‘ablesplained’ by a
medical authority –and these explanations often usurp the voice or perspective of the narrator
and overwrite their identity in scientific and pathological terms” (16–17). As an example of
how “the oracular voice of medicine dominates,” Dolmage and Jacobs describe a page from
Ellen Forney’s Marbles: Mania, Depression, Michelangelo, and Me (2012), in which she quotes from
the DSM (17; Forney 86). The DSM (The Diagnostic and Statistical Manual of Mental Disorders) is
commonly known as the Bible of psychiatry in the US. It describes (and establishes) the diag-
nostic criteria for mental illnesses. According to Dolmage and Jacobs, Forney’s depiction of her
diagnosis “completely disrupts” her previous pattern of storytelling (17). Diagnostic images like
these, they argue, “serve as an emblem for the medical model of disability, a model in which
disability can only be understood as a natural aberration, in need of therapeutic or surgical
intervention, cure, or eradication” (17–18).
However, I would argue that while the DSM may disrupt Forney’s story, Forney’s story
also disrupts the DSM. On the page Dolmage and Jacobs discuss, the DSM list of depres-
sive symptoms are boxed in a left column, while Forney’s commentary takes up the right
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side, establishing a tenuous equivalency. Moreover, the DSM criteria for depression are not
simply rendered (lettered) in Forney’s hand, they are also filtered through the secondary text
she consults: Depression for Dummies (Forney 86). In this way, Forney pokes fun at the DSM’s
authority and illustrates the complex way psychiatric concepts get filtered through multiple
textual iterations until the diagnosis finally finds its way to the patient, only to be refigured again
in a highly individual way.
Part of Forney’s pattern of storytelling in Marbles is the way in which she talks to and talks
back to psychiatry during her process of coming to terms with her bipolar disorder diagnosis. In
addition to the depictions of her many conversations with her therapist in the text, she also gives
her readers a crash course in her experiences with psychiatric medications (182–183; Figure 29.4).
These images are a powerful counterpart to pharmaceutical companies’ direct-to-consumer
advertisements in which a messy psychiatric impairment is quickly cured by medication. In these
advertisements, potential side effects are often presented in a rapid-fire voiceover, as a footnote
somehow separate from the successful cure narrative. Forney complicates this over-simplified
cure narrative in two pages that depict a series of medications she has used. In these pages side
effects are often simply effects: the pros and cons (or bonuses and non-bonuses) of taking a par-
ticular drug. Moreover, taking medication is a journey through multiple imperfect treatments,
and a continual negotiation in which Forney must determine what works best for her.
Forney’s Marbles reveals how messy, collaborative, and mutually negotiated patient encounters
with psychiatry can be and is a reminder that the medical model does not completely describe
the nuanced dynamics of disabled people’s encounters with the healthcare system.2 Even the
practice of medicine has its subversive moments, as physician Ian Williams’s graphic novel The
Bad Doctor: The Troubled Life and Times of Dr. Iwan James (2015) illustrates. A significant text in
the field of graphic medicine, The Bad Doctor tells the story of physician Iwan James (who has
much in common with Williams himself) and his encounters with his patients, colleagues, and
friends. In one scene James meets with a very anxious patient with OCD. In an attempt to allay
his patient’s fears, James reveals, “I’m about the same age as you and I had OCD when I was
younger” (135). He prefaces this conversation by noting that very few people know about this
aspect of his past. As James points out, although doctors must keep patient information confi-
dential, “there is no reciprocal agreement” (135). James’s confession leaves him especially vul-
nerable to stigma and even to professional repercussions: earlier when James discusses recurring
thoughts about shooting himself (thoughts which bring him relief), his colleague exclaims,
“this could invalidate our locum insurance!”3 The “bad” doctor is the doctor with a disability,
working within the system. Yet he is only “bad” if viewed within a reductive frame: it is his
insight into the disability experience that makes him a good, empathic doctor. Yet the bad
doctor’s existence also proves that the boundary between disabled and nondisabled is porous
and leaky, even for healthcare professionals. Though James only admits to having OCD in the
past in this scene (“I had OCD when I was younger”), in the larger story James’s OCD-style
thinking is still a presence.
As recent graphic memoirs attest, people with psychiatric disabilities are everywhere, even in
the belly of the beast. In Rx, Rachel Lindsay takes a job marketing antipsychotics. Since she has
bipolar disorder, this seems to be an untenable position. In the panel introducing chapter three,
“Passing,” she depicts herself as a wolf in sheep’s clothing, walking into Pfizer (Figure 29.5).This
representation of herself as a bad wolf, of passing in a world of neurotypicals, echoes Williams’s
sense of being a bad doctor and highlights the double consciousness of being disabled in an
ableist world. Today’s graphic memoirs of psychiatric disability are both a legacy of Green’s
groundbreaking confessional comics and are an extension of his work. Psychiatric disability
is not only foundational to the genre of graphic medicine; works about psychiatric disability
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Figure 29.4 Marbles, page 182. Description: Top of page reads, “From my diagnosis in January 1998
until that point in March 2002, I had taken:” followed by three sections illustrating Forney’s experiences
with Klonopin, Lithium, and Depakote. The next page, not included here, is a continuation that
illustrates Forney’s experiences with Celexa, Neurontin, and Zyprexa.
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Figure 29.5 Rx, n.p. Description: Two sheep carrying briefcases walk into an office building labeled
Pfizer. A wolf wearing sheep’s clothing, also carrying a briefcase, follows. At the top of the page, the title
“Passing” appears in large letters.
continue to shape and transform the medium and the minds of readers. For students of dis-
ability studies these graphic texts challenge stereotypes of mental illness and offer important and
unique insights into the experience of people living with psychiatric disabilities.
Notes
1 For very good reasons “psychiatric disability” may be a problematic phrase for many survivors of psychi-
atric treatment or for scholars of mad studies.While I do not identify as mad or as a psychiatric survivor,
I respect and value my friends and colleagues who do. I speak as someone who has lived through periods
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of major depression and treatment for that illness; I also have two close family members who have been
diagnosed with schizophrenia. I identify as a scholar of disability studies with lived experience of mental
illness.
2 Notably, while there is a robust and well-known tradition of incarcerated psychiatric patients seeking
freedom from coerced care and involuntary hospitalization, in her book Forney describes her struggle
to access affordable treatment.Today access to healthcare, rather than freedom from unwanted treatment,
is a central concern for many people with psychiatric disabilities in the U.S.
3 Locum insurance pays for a temporary replacement in case of a physician’s absence. Williams discusses
the dangers of disclosure in more detail in “OCD and the Graphic Novel.”
Works cited
Brewer, Elizabeth. “Coming Out Mad, Coming Out Disabled.” In Literatures of Madness: Disability Studies
and Mental Health, edited by Elizabeth J. Donaldson. New York: Palgrave Macmillan, 2018, 11–30.
Chute, Hillary. “‘The Shadow of a Past Time’: History and Graphic Representation in Maus.” Twentieth
Century Literature 52.2 (Summer 2006): 199–230.
Czerwiec, MK, Ian Williams, Susan Merrill Squier, Michael J. Green, Kimberly R. Myers, and Scott T.
Smith. Graphic Medicine Manifesto. Philadelphia, PA: Penn State University Press, 2015.
Dolmage, Jay, and Dale Jacobs. “Mutable Articulations: Disability Rhetoric and the Comics Medium.”
In Disability in Comic Books and Graphic Narratives, edited by Chris Foss, Jonathan W. Gray, and Zach
Whalen. New York: Palgrave Macmillan, 2016, 14–28.
Elmwood,Victoria A.“‘Happy, Happy Ever After’: The Transformation of Trauma between the Generations
in Art Spiegelman’s Maus: A Survivor’s Tale.” Biography 27.4 (Fall 2004): 691–720.
Forney, Ellen. Marbles: Mania, Depression, Michelangelo, and Me. New York: Gotham Books, 2012.
Green, Justin. Binky Brown Meets the Holy Virgin Mary. 1972. Rpt. Introd. by Art Spiegelman. Afterword by
Justin Green. San Francisco, CA: McSweeney’s Books, 2009.
Green, Michael J., and Kimberly R. Myers. “Graphic Medicine: Use of Comics in Medical Education and
Patient Care.” BMJ 340 (13 March 2010): 574–577.
Harmsen, Machteld. “The Art of Maus: Self-Representation and Confession in the Graphic Novel.” Frame
23.1 (May 2010): 70–87.
Hatfield, Charles. Alternative Comics: An Emerging Literature. Jackson, MS: University Press of Mississippi,  2005.
LaCapra, Dominick. History and Memory after Auschwitz. Ithaca, NY: Cornell University Press, 1996.
Lindsay, Rachel. Rx: A Graphic Memoir. New York: Grand Central Publishing, 2018.
“Obsessive-Compulsive Disorder.” National Institute of Mental Health (NIMH). U.S. Department of
Health and Human Services. www.nimh.nih.gov/health/topics/obsessive-compulsive-disorder-ocd/
index.shtml.
Price, Margaret. Mad at School: Rhetorics of Mental Disability and Academic Life. Ann Arbor, MI: University
Schalk, Sami. Bodyminds Reimagined: Dis(ability), Race, and Gender in Black Women’s Speculative Fiction.
Durham, NC: Duke University Press, 2018.
Spiegelman, Art. Breakdowns: Portrait of the Artist as a Young%@&*! New York: Pantheon Books, 2008.
———. Maus: A Survivor’s Tale: My Father Bleeds History. New York: Pantheon, 1991.
———. “Prisoner on the Hell Planet.” Short Order Comix #1, 1973. Reprinted in Breakdowns: Portrait of
the Artist as a Young%@&*! N.p.
Williams, Ian. The Bad Doctor: The Troubled Life and Times of Dr. Iwan James. University Park, PA: Penn State
———. “OCD and the Graphic Novel.” The Independent. 24 June 2014. www.independent.co.uk/arts-
entertainment/books/features/ocd-and-the-g raphic-novel-9557855.html.
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30
CHALLENGING
THE NEUROTYPICAL
Autism, contemporary literature, and
digital textualities
Hannah Tweed
In 2020, as for much of the late twentieth and twenty-first centuries, autism remains a
topic of fascination in literature and popular culture. Many representations of autism have
been critiqued as presenting individuals with autism as the unknowable other, reflecting
what Stuart Murray describes as the “desires of a society that wishes to be fascinated with
a topic that seems […] to elude comprehension” (4). This chapter provides an introduction
to literary and cultural depictions of autism since the mid-twentieth century, when Hans
Asperger and Leo Kanner published their initial papers on autism and Asperger’s syndrome.
It also acknowledges the history of autism outside of diagnostic terminology, focusing pri-
marily on autistic life writing. Significantly, while comparatively few novels, plays, or poetry
collections by openly autistic writers are produced by mainstream publishers, there are long-
standing traditions of autistic autobiographies, from Temple Grandin’s Emergence: Labeled
Autistic (1986) to the recent publishing success of Naoki Higashida’s The Reason I Jump
(2007; trans. English 2013) and Fall Down Seven Times, Get Up Eight (2013; trans. English
2017). These texts are far from unmediated; they frequently involve allographical prefaces
by medical professionals, certifying the diagnosis and self-identification of the authors.
Examples include Temple Grandin’s Emergence (1986) and Thinking in Pictures (1995); Lucy
Blackman’s Lucy’s Story: Autism and Other Adventures (1999); Luke Jackson, Freaks, Geeks, and
Asperger’s Syndrome (2002). However, this practice of mediated discourse, both in terms of
limited publishing opportunities, and explicitly mediated “autiebiographies”, is shifting in
the twenty-first century due to the rise of digital publication platforms and online media.
I use the term “autiebiography” in line with G. Thomas Couser’s use of the term; “first-
person narratives by people with autism” (5), where the author typically –although not
always –reflects on their experiences as a person with autism as a key part of the narrative.
Focusing on creative writing and autobiography on the online forum Wrong Planet, “a web
community designed for individuals […] with Autism” (alex, “About Wrong Planet”), and
print autiebiographies that started as digital texts, I argue that online forums for autistic
people offer publishing spaces that are comparatively free of neurotypical gatekeepers, and
produce texts that explicitly react to and counter a range of autistic stereotypes found in
earlier literary depictions of autism.
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Challenging the neurotypical
History and contexts

In 2008 Stuart Murray published Representing Autism: Culture, Narrative, Fascination, the first
monograph focused on literary and cultural representations of autism. Murray argued that
British and American culture (and disability studies more generally) had moved beyond the
“medical model” when discussing disability, with a reduced focus on diagnosis, cure, and nor-
malisation (2; see also Snyder and Mitchell 175, and Longmore 34–41). Disability studies critics
suggested that avoiding the medical mode would lead to fewer tales of the “personal tragedy”
(2) of disabled individuals and their families. However, popular culture has continued to produce
narratives concerning learning disabilities, especially autism, as the unknowable other, reflecting
the “desires of a society that wishes to be fascinated with a topic that seems […] to elude
comprehension” (4).
Many popular cultural depictions of autism are fundamentally limiting in their representations
of disability: first by the established trend of neurotypical people or characters speaking for or
in place of autistic individuals (a trope frequently exacerbated by representing the autistic char-
acter as a child, or a childlike adult), and second by the prioritising of the views of the medical
establishment, at the expense of individual characterisation and expression. Other recurring
characteristics of autistic individuals in literature and film include: savant abilities; a lack of self-
reflexive thought; interests in set topics (maths, numbers, and patterns); the inability to commu-
nicate with neurotypical characters. While many of these traits could be described as attributes
of autism, when, for example, interest in maps becomes shorthand for a character’s savant abil-
ities and disinterest in social interactions, this pattern becomes a potentially damaging stereo-
type. For example, in Mark Haddon’s The Curious Incident of the Dog in the Night-Time (2003),
the main character Christopher’s eidetic memory, aptitude for maths, and tenacious interest
in prime numbers can become a form of metaphorical shorthand for his distance from the
neurotypical characters in the text.Yet autiebiographies such as Temple Grandin’s Emergence and
Thinking in Pictures and Lucy Blackman’s Lucy’s Story suggest some of the ways in which literary
writing also has the capacity to eschew or manipulate the dominant stereotypes of depictions
of autism and genre conventions and represent alternative, complex understandings of autism.
As part of increased media focus on autism in the twenty-first century, the diagnostic termin-
ology surrounding autism has become commonplace, sometimes at the expense of reflections of
lived experience.While I discuss “autism” throughout this chapter, following the most commonly
used term of reference in Wrong Planet, the term encompasses such a broad and varied range of
characteristics and experiences that it becomes an arbitrary categorisation. The act of naming,
diagnosing, and defining is one of authority. Cultural authorship has appropriated this medical
diagnostic terminology and closely associated it with a set of stereotypes which are frequently
distant from some individuals’ experiences of the condition. Focusing on changing medical
terminology as an example of this dislocation, autism has been varyingly described as a neuro-
logical disorder (Holmer Nadesan 78), a lifelong developmental disability (National Autistic
Society, “What Is Autism?”), and a triad of social, communicative, and imaginative impairments
(Wing and Gould 12, Happé and Vital 30). It entered its current diagnostic usage in Europe
and America in the 1940s, following the publication of Leo Kanner’s “Autistic Disturbances of
Affective Contact” (1943) and Hans Asperger’s “Autistic Psychopathy in Childhood” (1944),
but remained an obscure term until the 1960s, when Bruno Bettelheim’s influential (and sub-
sequently discredited) “refrigerator mother” theory began to circulate. Bettelheim posited that
autism was caused by a mother’s subliminal rejection of their child, which the child sensed,
and responded to by rejecting both the mother and people at large (17–18). This pattern of
mother-blame has endured in literary representations of autism and cognitive difference long
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after the theory has been discredited. “Refrigerator mothers” are discussed 213 times on Wrong
Planet (2 April 2018); even more than fifty years after these theories were circulated, they retain
significant cultural (if not medical) influence. The classification category and diagnostic cri-
teria associated with autism in the Diagnostic and Statistical Manual of Mental Disorders (DSM),
one of the most influential English-language psychiatric diagnostic manuals, dictates rates of
diagnosis across much of the English-speaking world in the twentieth and twenty-first cen-
turies. The widening of the DSM diagnostic criteria for autism in 1980, 1987, 1994, and 2013
was matched by corresponding jumps in diagnosis, which led to greater public discussion of
the condition, and increasingly hysterical references to an “epidemic” of autism (Grinker 1–5,
Miller et al. 200–210). These references to “epidemics”, in turn, have filtered into literary and
cultural depictions of autism; the vast majority of explicit literary representations of autism have
been published since 2000.
In the history of cultural definitions of autism, two potential Ur-texts –what Murray refers
to as “autism events” (12) –speak to different generations. Rain Man (1988), Barry Levinson’s
seminal cinematic representation of autism, provided a template for depictions of autism in film
for subsequent decades and associated a number of now pervasive stereotypes of the condition.
Dustin Hoffman’s Oscar-winning performance as Raymond Babbitt, a childlike (if middle-
aged) autistic savant, is referenced directly and indirectly in a significant number of the films
with autistic characters (e.g. Snow Cake (2006), I Am Sam (2002)), and such allusions demon-
strate its significance in moulding public perceptions of autism and disability. First among these
stereotypes is the association between autism and savantism. Given that the National Autistic
Society lists prevalent savantism as one of the four most common myths about autism (“Myths
and Facts about Autism”), this is a connection that is at best misleading, and at worst panders
to a cultural desire for disability as spectacle, what Dan Goodley refers to as “a body that sparks
cultural fascination but also rejection” (59).
Over fifteen years later, Mark Haddon’s The Curious Incident of the Dog in the Night-Time
(2003) received a comparable amount of critical acclaim and attention, winning plaudits for
its original portrayal of autism, and the seeming daringness of its choice of an autistic narrator.
It has since been adapted for stage (2012) by Simon Stephens, winning seven Olivier Awards
and five Tony Awards, and Warner Bros have purchased the rights for a film adaptation. In both
these cases increased awareness of autism has the potential to increase public understanding
of the experiences of cognitively different individuals. Nevertheless, these two texts become
potentially problematic when held up as definitive representations of autistic experience. The
Curious Incident, for instance, has been used as a resource on teacher-training courses and been
recommended as a novel that can teach police how to interact with people with learning
disabilities (Singh).1 The cultural power of these celebrated fictional portrayals of autism by
neurotypical writers and directors stands, however, in stark contrast with the comparably low
profile of autobiographical accounts that autistic experience written in the same period, from
Temple Grandin’s Emergence (1986) to Luke Jackson’s Freaks, Geeks, and Asperger’s Syndrome
(2002) and Naoki Higashida’s autobiographical writing. Similarly, there are very few fictional
texts or poetry anthologies advertised as containing material written by autistic authors. The
best-known autistic autobiography is probably Naoki Higashida’s The Reason I Jump (2007;
trans. English 2013). Although it is a first-person account of Higashida’s life with autism, this
autiebiography is mediated, and to a degree validated, by the fact that it is translated into
English from Japanese by David Mitchell and K. A. Yoshida, and Mitchell’s foreword to the
text is heavily advertised in the cover. The Reason I Jump is also published by Sceptre, the same
literary fiction and non-fiction imprint of Hodder and Stoughton that David Mitchell’s novels
are published under, and the text is published with cover images and styling that distinctly
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associated it as part of Mitchell’s oeuvre, in clear contrast to the head-shot of Higashida used in
the Japanese version of the text. As such, while The Reason I Jump has since been translated into
thirty-five languages, with sales in six figures (Mitchell), the fact that the majority of this success
and attention came several years after the original publication in Japanese does point to Mitchell
and Yoshida as mediating (if also carefully benign) influences to its circulation.
This chapter probes how autiebiographies engage with questions of autistic authority in the
twenty-first century, with the increasing dominance of online publication models. I examine
the role of co-writers, guardians, and gatekeepers, with a focus on autonomy and digital inter-
dependency. These representational politics are particularly important in narratives (autobio-
graphical or fictional) depicting individuals who are non-verbal (unlike Christopher in The
Curious Incident, or Raymond in Rain Man). I explore some of the problems associated with
defining personhood and selfhood in terms of the ability to write or communicate verbally,
and the complexities of representing non-verbal experience in written forms such as a novel
or autobiography.
Discussions of non-verbal communication require close attention and sensitivity to language –
both to challenge problematic or damaging terms, and a commitment to listening to people’s
lived experience of autism (and disability more broadly) in public discourse. Accordingly, I have
avoided using the terminology of high/low functioning –partially because it is misleading, and
partially because it plays into the language of “use” that pervades public discourse on autism.The
damaging potential of the language of high or low functioning autism can be illustrated by the
media debate surrounding Simon Baron-Cohen’s 2009 study into a connection between foetal
testosterone and autistic traits in neurotypical children. While the study focused on potential
causal evidence explaining the gender imbalance in autism diagnosis (which is heavily skewed
towards males, with an estimated 4:1 ratio of male to female diagnosis (Mullard)), media reports
concentrated on the possibility of prenatal screening for autism, and the potential suppression
of savantism and genius, as societally useful attributes (Berlins, Randerson, Bosley). I suggest
that this emphasis and rhetoric is problematic: the approach reduces discussion of individuals
with autism to their specific disabilities, and carries a concerning thread of eugenic discourse.
The latter is explicitly challenged by philosophers and disability studies critics such as Martha
Nussbaum, Michael Bérubé, and Eva Feder Kittay (606–627). Bérubé, discussing John Rawls’
contractarian theories of social justice, states that:
Any performance criterion –independence, rationality, capacity for mutual cooper-

ation, even capacity for mutual recognition –will leave some mother’s child behind.
It will create a residuum of the abject, a fraction of the human family that is to be left
out of the accounting. Faced with that prospect, it is not enough to say that we should
presume competence when confronted by cognitive disability: because sooner or later
we will have to come to terms with people who truly are incapable of understanding
what it means to come to terms. And then will we write them into the social contract,
or will we write them off? (100)
Within this context of human rights, and specifically the rights of people with learning disabil-
ities, language is still seen by many critics and theorists as shaping experiences and perceptions.
As such, attentiveness to the language of personhood is integral to close readings of literary
discussion of disability.
In line with Bérubé and Nussbaum’s challenges to the term “normal”, and popular discourse
on online autistic forums, I have chosen to use the neologism “neurotypical” to refer to individ-
uals without autism or a learning disability (Nussbaum 125–126). Neurotypical or “NT” is the
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preferred term of a significant number of autistic individuals to describe people without autism
or a comparable cognitive difference, including Jean Kearns Miller, an autistic author whose
work offers a powerful challenge to prevailing stereotypes about autism through her creative
autobiographical writing, stemming from an online support forum. As such, it seems appro-
priate to use language that has evolved from within online and literary autistic communities,
alongside the more pervasive medical language of diagnosis.
Case study 1: Women from Another Planet?

Women from Another Planet? Our Lives in the Universe of Autism (2003) is an explicitly multinational
and multi-authored text written by women with autism, and edited by contributing editors Jean
Kearns Miller, Ava Ruth Baker, Sola Shelly, Jane Meyerding, and Diane Krumins (the latter of
whom also produced the cover art). The text is a series of interwoven autiebiographies, drawn
from the members of an online support group for autistic women (beginning as an email
list), and forms a bridge between the (relatively) unmediated digital writing on Wrong Planet,
and traditionally printed autiebiographies. As with many autiebiographies, Women from Another
Planet? features a foreword by a medical professional, Dr Judy Singer. But Singer is a guarantor
with a difference; her degree is only mentioned in the final pages of the book, under “About
the Contributors”, and even then, her biography states that she self-identifies as having autism
before outlining her academic interests and qualifications (257). In her foreword to the text,
Singer introduces herself as an autistic woman, rather than a medical expert, and promises a
book that will not “give you a list of pathologies and signs” (xi). Instead, Jean Kearns Miller
and the other writers enable the reader to place themselves in the position of each of the
authors of the text, as they experience autism and their environment differently. More than
expressing difference, Singer’s foreword presents Women from Another Planet? as a self-conscious
and politicised prototype for a new mode of autistic expression:
What we are is the first of a new wave of consciousness in a planet coming to awareness
of its extraordinary diversity. We are the first wave of a new liberation movement, a
very late wave, and a big one, just when you thought the storm of identity politics,
with its different minorities jockeying for recognition, was surely over. We are part of
the ground swell of what I want to call Neurological Liberation. It is my hope that this
book will begin the task of adding a further intersection to the current framework of
gender, class, ethnicity, race, sexual orientation, age, and disability. I hope it will add
neurological difference to the existing set of social variables. (xii)
Singer proposes a very different sort of “use” for her text to that proffered in wider discourses
on literary representations of autism; one that extends far beyond snippets of helpful informa-
tion or insight for neurotypical readers, and into the language of manifesto. She proposes an
alternative relationship between authors and readers of autiebiography, one where the latter –
irrespective of their neurological status –are asked to “bear witness” to the experiences of the
former, rather than judge them, and to inhabit their perspective, at least “for a while” (xi).
This description of the creation of Women from Another Planet? closely resembles the
transcripts –themselves fragments of fuller conversations spread out across the message boards –
of Jean Kearns Miller and her co-writers’ discussions about how best to structure Women from
Another Planet?, which form the first third of the book. Kearns Miller and her fellow authors
engage in an extended and self-conscious debate in the first section of the book; their discussions
perform a kind of active recreation of autistic autobiography:
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The Book List Begins
The idea to write a book about AS [Asperger’s Syndrome] women came up on an email list whose
members are mainly people on the autistic spectrum. […] This email list of contributing editors
became what we called the booklist. Early on, we knew that it was going to be more than a place to
discuss how to put the book together. Email is our preferred mode of communication and socialisation,
because it is asynchronous, allowing us the freedom to process each other’s ideas at our pace. […]
J ean: I’m getting so much out of reading your submissions, even –and maybe especially
in some ways –the dialogue posts, the longish things that respond to another’s post.
I’d love to see some of that exchange format in the book because it’s so vibrant –even
our discussion of our fears of being misunderstood. If I had the nerve I’d propose a
whole book as letters/conversations.
Success/Failure
As an example of our interactions: a thread (a discussion that starts with a topic and evolves in
various directions), is brought here in its entirety, with very minor editing. […]
J ean: If any of you need a topic to work on, here’s what a potential contributor told me
and why I find it compelling. This woman raised the issue of the marketing concept
of “AS person makes good!” She is not by her estimation making good. […] I think this
poses an open-ended ethical and philosophical question that bears thinking/posting
about.There are successes.There are failures.There’s also just AS, the good and the bad.
Everything in life is both/and, not either/or.
Gai l : People shouldn’t be given the impression that we could all be college graduates or
that we are all so dysfunctional that we can’t tie our own shoes. […] There are times
when I am more functional, and other times when I am less. Just the other day I got
into it with the hubby because he sees the times when I can do certain things. He
thinks I can do this all the time if I “try hard enough.” […]
J ane: The “can’t” versus “won’t” or “won’t try” dilemma!
[…]
Liane: The issue Jean raised is the very essence of one of my biggest struggles. I’m
struck by how often I defend my AS, how often I exclaim (often rather empathically)
“I do have AS! You don’t know what I go through at home! Must I prove it to you?”
[…] I do not want to have anyone think I’ve overcome some horrid issue, for that
implies to me that AS is a tragedy!
Sally: The thing that so niggles me about this issue with AS is objectivity. I have no
diagnosis, though I have a partner who swears that I am, and a sister that does also.
So, as has been said before, every time I mention any stuff to NT’s they say, “Oh, but
I have something like that sometimes,” and I myself am left wondering if I am just
being a neurotic hypochondriac.
Jane: Well, I do have a diagnosis from an expert now, but I am not sure how much
difference it makes. (3–7)
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Barbara Hillyer writes that composing an autobiography or memoir is “an act of control-
ling, delimiting, and shaping one’s emotional expression” (35).Yet what is demonstrated in this
extract is more than that: it is first an assessment of potential public perceptions of “emotional
expression” and evidence of authors modifying their structure and content accordingly. It is
also a performative act: making clear the controlled and conditional nature of autobiographical
narrative, while providing additional critical (and ironic) commentary on the unedited nature
of the example “thread”. This attitude presents a marked contrast to the validating allographical
statements of truth and use found in other, traditionally published autobiographies. The extract
makes clear that Kearns Miller and her fellow authors have made a choice to foreground the
process of constructing a narrative and the ways in which both autobiography and medical diag-
nosis are subject to this same shifting often unstable, processes.
The authors of Women from Another Planet? also explicitly engage with mediation, author-
ship, and allographical input elsewhere in the text. One contributor, Mary Margaret Britton
Yearwood, suggests that it would be useful to neurotypical and autistic readers alike to include
glosses on “autobiographical snap shots” (14). This suggestion is preserved in the book, along-
side the proposed commentaries, which appear in italics throughout the text. Others debate the
pros and cons of an allographical preface or introduction; Jane Meyerding, for example, suggests
choosing an “official of some kind […] an officially diagnosed person, perhaps. Or, if necessary,
a PhD” (16). Sola Shelly responds that such a contribution “might help, but there is no 100%
insurance” that will ensure neurotypical readers (or indeed any reader) will understand the book
and points out that “[Gunilla] Gerland’s books had a preface by a respected professional” (16)
but were not automatically considered universally accessible.The eventual choice for the writer
of the foreword unites these contrasting suggestions: Judy Singer, PhD, is a self-identifying aut-
istic individual; her academic qualifications are only mentioned at the back of the book, in the
biographies of the list of contributors.
In Women from Another Planet? Jane Meyerding recounts her childhood issues with hypersen-
sitivity where, although she “wasn’t accused of lying” (as a “transparently honest” child), she was
constantly told she was exaggerating her sensory experiences:
It was common for people to tell me how I felt about things. (“Oh, you must feel very
_____about that”), and perhaps that is normal for adults to do with children. In my
case, it was confusing because so often my feelings did not agree with those ascribed
to me. (99)
This description can be read as exemplary of two trends common to autistic autobiography.
Firstly, it illustrates the discomfort and even pain Meyerding associates with hypersensitivity,
and the further distress caused when neurotypical listeners cannot or do not comprehend the
autistic individual’s sensory experience. Secondly, Meyerding’s account demonstrates a pattern
of neurotypical rewriting of autistic experience. Autobiography, and particularly digital forms
of life writing such as Women from Another Planet?, have the potential to offer a space for formal
experimentation, such as co-authored forms of autobiography.These offer fertile media through
which to discuss and perform the construction of narrative itself, and think about the ways
in which different neurotypicality, cognitive difference, and autobiography intersect. When
autiebiographies are introduced to the reader (neurotypical and otherwise) by a paratext that
focuses on the expression of autistic experience and their artistic production, rather than just
diagnosis or observation, then there is a greater scope for interpretation and different readings
of the text and autism itself. Women from Another Planet? disrupts narrow medical paradigms that
often introduce published print autobiographies by people with autism. As such, it is part of an
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increasingly influential group of online publishing which sidesteps mediation from neurotypical
gatekeepers and becomes a “catalyst in a growing self-advocacy movement” (340).
Case study 2: Wrong Planet

Wrong Planet (www.wrongplanet.net) is a “web community designed for individuals (and
parents/professionals of those) with autism, Asperger’s Syndrome, ADHD, PDDs, and other
neurological differences” (alex, “About Wrong Planet”). It features a discussion forum, blogs
and reports on autism research, book reviews of recent publications (e.g. Steve Silberman’s
Neurotribes (2015)), and a range of articles and “how-to” guides. This minimalist mission, which
foregrounds a “community designed for individuals […] with autism”, makes a clear statement
about the intended priority readership –with “parents/professionals” set apart in parentheses.
“Design” is also key to the process of reading and writing on this site, as in many other online
forums centred on autism. For example: the forum is low on intrusive graphics; there are no
auto-play sound or film functions, even in the “Video” section of the site; the colour palette is
muted; all text is formatted in a sans serif font. The latter, at least, is entirely standard for online
forums more generally; but cumulatively, the paratextual features of Wrong Planet are unobtru-
sively centred around access –particularly access for readers who may have sensory differences,
or learning disabilities that render serif fonts harder to read (such as dyslexia).2 Meanwhile, the
name choice, as with that of Women from Another Planet?, re-appropriates one of the prevailing
stereotypes about autism: that autistic people are separate from the world, alien to and alienated
from neurotypical people (Hacking 44–59). These concepts are explored, typically to the det-
riment of the autistic character or person, in a range of cultural productions: from Simon
Armitage’s Little Green Man (2001) to Hari Kunzru’s Gods Without Men (2011), and, most con-
troversially, Autism Speaks’ 2009 infomercial I Am Autism (dir. Alfonso Cuarón), where autism
is a foreign entity that “will plot to rob you of your children and your dreams” (I Am Autism;
Autistic Self Advocacy Network). In choosing to use and repurpose this stereotype of the aut-
istic individual as an alien invader, both Jean Kearns Miller and her co-authors, and the creators
of and contributors to Wrong Planet, present texts that discuss autism and neurotypical experi-
ence, where the latter is either presented as atypical (to the writer and presumed readers), or as
a colonising influence.
This question of control regarding representation of autism is a recurring theme, particularly
in life writing and creative writing by autistic people. This is not only a matter of who controls
diagnostic terminology and behavioural expectation, but also publishing environments and lan-
guage: the right to self-represent. Prolific autiebiography author Donna Williams describes her
insistence on editorial control over her texts as exemplar of how “it is not that I dare to speak
about other people who share conditions like mine but how I dare to that is important” (viii,
italics added). Wrong Planet is explicit in engaging with its status as an alternative gatekeeping
culture. Its rules of conduct are locked at the top of every discussion thread on the forum, and
state that “insinuation, ridicule and personal insults, regardless of whether direct or indirect” are
banned, and while “attacking an opinion, belief or philosophy is acceptable, […] attacking the
person making the comments is not” (alex, “WrongPlanet Rules”). Apart from the statement
about creating a safe space for discussions, and reminders regarding copyright laws and offensive
language and images, the Wrong Planet rules of conduct involve little interference with posts.
The site removes material that is deemed to be slanderous, illegal, or constitutes a personal
attack on another person but, beyond this, form, grammar, and content are not edited. Writing
about social media, and particularly how life writing blog posts are shaped by their digital
platforms, Madeleine Sorapure argues that contemporary autobiography theory “needs to
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account for this blended/cyborg model of authorship, where the interfaces of writing strongly
influence self-representation” (268).The trend towards joint digital authorship in contemporary
autiebiographies is clear: from Women from Another Planet? to Naoki Higashida’s Fall Down Seven
Times, Get Up Eight (based on blog entries Higashida wrote as a teenager, edited to react to
reader responses). The range of autistic publications and online communities currently oper-
ating offer new models of reading auto-and autiebiographies: they strip away paratexts and
traditional gatekeepers and editors, offering a space in which writers are highly self-conscious
about processes of mediation and form but can creatively challenge established forms of writing
about autism.
This self-conscious approach to form is also evident in the ways in which the writers on
Wrong Planet discuss and analyse literature about autism or by autistic people. Since the estab-
lishment of Wrong Planet, even as a home enterprise and coding practice in 2001, the site has
foregrounded its engagement with literature and culture, from the epigraph “I guess I was just
born on the wrong planet!” (an embedded link to Bill Nersshi’s “Born on the Wrong Planet”
(1996)), to site subsections dedicated to autobiography (titled “Ramblings”) and “Music”
(Wrong Planet, 14 March 2001). Furthermore, from the relaunch of the site as a dedicated
forum for people with autism, there was consistent interest in creative writing (fiction and
non-fiction). The only theme-specific topics to receive dedicated menu entries in 2004, when
the site reached 500 members, are “Writing and Poetry” and “Books” –both discussion
areas centred on creative writing. Other menu links are functional rather than thematic –
“Chatroom”, “FAQ”, “Links”, and “Forums” (alex, “WrongPlanet has 505 members with 5235
posts”). In the current incarnation of the site, two key strands are evident in terms of the devel-
opment of new directions in writing by and about autism. One subsection of the “General
Discussion” section of the site, with 68,446 posts across 4,292 threads, is “Autism Politics,
Activism and Media Representation”, where the latter topic receives significant attention
and analysis. Under “Topic Discussion”, “Art, Writing and Music” is the second-most popular
topic (after “Politics, Philosophy and Religion”), with 165,891 posts across 99,845 threads.
There are a wide range of threads centred around publishing written work (including threads
on self-publishing and its benefits and dangers), and threads where participants can post their
creative writing directly to the site. Posts such as “Any Fiction Writers Here?” evidence com-
munity members with an active interest in writing and publishing processes, as do the var-
iety of threads advertising individual contributor’s published works as either print or e-books
(e.g. “So, My First Book Has Been Published”, “My Book Is Being Published!”, and “My
Autobiography Is Published”). Meanwhile, the “WrongPlanet Writing Showcase” is one of
only four “sticky” threads on the “Art,Writing and Music” discussion board, and offers a venue
for publication and feedback on members’ creative writing. Finally, the “general” section of the
forum offers a space for members to communicate their everyday experiences, autobiograph-
ical segments, if not “complete” autobiographies. Overall, these texts demonstrate a consistent
resistance to neurotypical editorial influences in autistic life writing; contributors recognise the
potential for online communities to act as relatively unmediated spaces, protecting the right
to self-represent, but also to engage in literary critical readings of other works about autism or
by writers with autism.
Stuart Murray concludes Representing Autism with an appeal for “aggressive, proactive and
provocative” care: a form of care between people with autism and neurotypical individuals that
“demands that interventions are made, voices are listened to, and even that texts are re-read in
a fashion that has justice as its ultimate goal” (212). Digital humanities scholar Aimée Morrison
writes that “digital life writing maps a realm with no gatekeepers, editors, or canons, produ-
cing texts to excess on a scale of production and publication that completely overwhelms the
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boutique reading practices of literary scholarship” (112). Morrison’s statement is offered as

a challenge to literary critics, their methodology, and their reading; it also provides a poten-
tial response to Murray’s call for caring interventions and rereadings. Digital autiebiographies,
particularly those written and published without neurotypical publishing constraints and
gatekeepers, engage with different ways and methods of understanding and representing autism
in popular culture and narrative, while demonstrating new modes of authorship, production,
and reading. Both Women From Another Planet? and Wrong Planet showcase contributors who
are self-consciously engaged in literary critical readings, creative practices, and peer support.
They display online spaces which allow for dialogue between texts and contributors, where
forum contributors are both creative writers and critics, and where different roles and types of
writing coexisting in one space within a digital format and community. More importantly, in
the above examples people with autism are driving discussion and analysis; a prioritisation and
valuing of lived experience that embodies the disability studies campaign slogan “nothing about
us without us”.
Notes
1 The Curious Incident is set reading for module EUC 488: Multicultural Perspectives in Children and
Youth, Department of Education, SUNY Geneseo, and recommended as part of the Postgraduate
Certificate in Specialist Teaching, Department of Education, Massey University, University of New
Zealand. As part of the UK white paper “Building Communities, Beating Crime: A Better Police
Service for the 21st Century” (2004), a member of the Government’s Learning Disabilities Taskforce
recommended that “all police officers should read The Curious Incident”, p. 62.
2 For more information on autism and sensory differences, or diagnosis of autism alongside other disabil-
ities or conditions, see National Autistic Society, “Sensory Differences” and “Related Conditions”.
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377
378
INDEX
Note: page numbers in italic type refer to figures.
able bodies, and stage musicals 265, 266, 272 Alaniz, José 353

ableism 24, 25, 74, 116, 242, 243–244; and the Albert, Lyle Victor  254
theatre 254, 268–269 Alexie, Sherman 10, 11–12, 13, 15
Access to Work program, UK 263 Alice in Wonderland 90, 91
accessibility 2, 244; and the theatre 253–254, 261, All About H Hatter (Desani) 158
262, 263; in tribal built environments 9, 18 All the Weight of Our Dreams: On Living Racialized
ACK Lab 261 Autism (Meunier) 13–14, 65
Acker, Kathy 323 Allan, Kathryn 83
Acorn, Milton 219–221 Alter, Robert 144, 145–146, 153
actor training, inclusivity in 258 American English 195
ADA (Americans with Disabilities Act) 3, 31, 241, American exceptionalism 168
245, 254 American football 267
adaptation 83 American Indian Sign Language see AISL
adoption of Indigenous children 15 American Modernist poetry 2
Advice to New-Married Persons: Or, The Art of American Psychological Association: DSM
Having Beautiful Children (Quillet) 115–116 (Diagnostic and Statistical Manual) 31, 33,
Aesthetic Nervousness: Disability and the Dependencies 361–362, 368
of Discourse (Quayson) 156 American School for the Deaf 46
African-Americans: medical segregation 132, American Sign Language see ASL
133–134; narrators 86; police violence against American stage musicals 265–266, 273; casting
234–236; and psychiatric reform 138; supposed culture and representation 272–273; diegetic
racial inferiority 151; see also Afro-modernism; disabilities 266, 267, 271–272; disability as
black disability studies metaphor 269–271; triple-threat performers
Afrofuturism 23 266–269
Afro-modernism 3, 132–133, 138–139; Hughes: Americans with Disabilities Act see ADA
“Berry” 134–135; Hughes: “Home” 135–138; Amponsah, Prince 258–259
medical segregation 132, 133–134; psychiatric Amputees Guide to Sex, The (Weise) 245
reform 138 Anatomy of Criticism: Four Essays (Frye) 147–148
“After Reading ‘Deaf School’ by the Mississippi Andrew, Joe 283–284
River” (Antrobus) 236–237 Andrews, Tom  245
After the Blackout (Thompson) 258 Anesthesia (Fries) 245
Ahmed, Sara 73 Anglophone Indian fiction 3, 156–157; Desai:
AIDS 318, 324, 325; see also Close to the Knives: A Clear Light of Day 160–161; Kanga: Trying
Memoir of Disintegration (Wojnarowicz) to Grow 164–165; Lahiri: “The Treatment of
AISL (American Indian Sign Language) 10–11 Bibi Haldar” 161–162; Mistry: A Fine Balance
378
379
Index
159–160; Rushdie: Midnight’s Children 157–158; autism 3, 85, 279–280, 366; high/low functioning
Rushdie: The Moor’s Last Sigh, The 156, 157, in 369; history and contexts 367–370; Women
158–159; Sinha: Animal’s People 163–164 from Another Planet? Our Lives in the Universe of
Anima (Pincherle Moravia Rosselli) 204, 206, 209 Autism 370–372, 374, 375; Wrong Planet 366,
Animacies (Chen) 348–350 367, 368, 373–375; see also Curious Incident of the
animacy hierarchies 197, 346 Dog in the Night-Time, The (Haddon); Monster
animal studies 63 Girl (Fischer)
animality 63 “Autistic Disturbances of Affective Contact”
Animal’s People (Sinha) 163–164 (Kanner) 367
animorphism 200 “Autistic Psychopathology in Childhood”
Anjaria, Ulka 156 (Asperger) 367
anthropomorphism 198, 199 autobiography theory 373–374
Antigone 204 Autobiography/Anti-Autobiography (Bartlett)
antinormative narratives of embodiment 167–168; 242–243, 243–245
capacities of incapacity 170, 175–176; Elkins: auto/somatography  343
The Magic Kingdom 168, 171–174; Haddon: The autothenography 317–318
Curious Incident of the Dog in the Night-Time 168, “Awakeing Deaf Theatre in Canada”
174–175, 367, 368, 369; Powers: The Gold Bug conference 260
Variations 168–171 Awkward-Rich, Cameron 3, 31–42
Antrobus, Raymond 225, 233–238 Awonuga, Theresa  236
apps see HOAX project (Thornton) AWP (Associate Writing Program) 82, 248
Arbuthnot, Dr. John 102
“archetypes”: disabled characters in fiction B., David 353
147–149, 148 Back to Back 307
architecture: and deafness 194; see also accessibility Bad Doctor, The:The Troubled Life and Times of
Arendt, Hannah 145 Dr. Iwan James (Williams) 354, 362
Armitage, Simon 373 “Bad Road” (Piepzna-Samarisinha) 221–222
Armstrong, Jeannette 216 Bahan, Benjamin 44
Armstrong, Nancy 112 Baird, A.J. 241
artists’ books 327, 329–330, 331, 335 Baker, Ava Ruth 370; see also Women from Another
arts see cross-media  arts Planet? Our Lives in the Universe of Autism
ArtsClub 262 Baker’s Wife, The (Schwartz and Stein) 269–271
AS (Asperger’s Syndrome) 371; see also autism Ballad of Black Tom, The (LaValle) 86
As Far as I can See (Leggott) 229–230, 231 Ballin, Albert 48
Asch, Adrienne 145 Banks, Kimberley 136
ASL (American Sign Language) 10–11, 45, 48, Barchester Towers (Trollope) 126
49, 194, 246, 260, 265; fingerspelling 52, 53; Bard on the Beach 262
glosses 49, 53, 54; images 197; literature 44; Barile, Alexandre 37
performances 43; poetry 197–201; TASL Bar-Josef, Eit an 159
(Tactile ASL) 201n4, 248; theory and praxis Barker, Clare 10, 156, 157, 158
of writing in English literature 51–55; Barnes, Steven 23
typographical features 52; see also Barnett, Scot 349
D/deaf  poetry Baron-Cohen, Simon  369
Asperger, Hans 366, 367 Barounis, Cynthia 354
Asperger’s Syndrome see AS Barras, Charles M. 266
Associate Writing Program see AWP Barrett Browning, Elizabeth 120, 182
asylums:Victor LaValle: The Devil in Silver 83, Barthes, Roland 83, 324
86–88, 92 Bartlett, Jennifer 219, 241, 242–243, 243–245,
Atherton, Raymond 276 248–249
athleticism 268; see also triple-threat performers Bartmann, Saartje 58
Atwood, Margaret 214 Baudrillard, Jean 173
Audio Poems (Simpson and Simpson) 245 Baugh, Bruce 309–310
Aurora Leigh (Barrett Browning) 182 Bauman, H.-Dirksen  43, 48
Austen, Jane 110 Bauman, Zygmunt 282
austerity policies 278 Baumer, W.H.  267
autiebiographies 366, 367, 368, 370, 372, 373, Baylor, Lamar 268
374, 375 BBC 263
379
380
Index
Beasts of Burden (Taylor) 63 Blindness and Writing: From Wordsworth to Gissing

Beauty Is A Verb:The New Poetry of Disability 214, (Tilley) 182–183
215, 219, 242, 248, 249, 333 blood quantum 16–17
begging 185–186, 190; see also blind beggars Bloodchild and Other Stories (Butler) 21
begging letters 187–188 “Blue Irises” (Leggott) 231
Bell, Alexander Graham 48–49, 196 Bodies of Modernism (Linett) 193
Bell, Cece 253 Body Mutinies, The (Perillo) 224, 225–229, 237
Bell, Christopher 132 Body Undone, A (Crosby) 343, 345–346
Bell Curve, The: Intelligence and Class Structure in bodymind 22
American Life (Herrnstein and Murray) 151 Bodyminds Reimagined (Schalk) 354
Beloved (Morrison) 286 “Boil, The” (Nowlan)  219
Benjamin, Walter 318, 319–320, 325 Bolaki, Stella 3, 327–342
Ben-Yishai, Ayelet  159 Bolds, India 268
Berger, James 102 Bonner, Marita 138
Berrios, G.E. 98–99 Book of Judith, The (Bulmer) 263
Berry, Emily 236 Borges, Jorge Luis 230
Bérubé, Michael 24, 33, 34, 149, 151, 214, 305, Bose, Chris 216
306, 369 Boswell, James 99
Bettelheim, Bruno 367–368 Bourke, Joanna 278, 286
Between C & D 318 Bourrier, Karen 122, 123, 124
Beyond Victims and Villains: Contemporary Plays by Bowen, Elizabeth 194
Disabled Playwrights (Lewis) 254 Boyd, Hugh Stuart 182
Bhabha, Homi 142, 146, 150 Boyle, Casey 349
Bhopal 163 Braidotti, Rosi 170
Binky Brown Meets the Holy Virgin Mary (Green) Brain’s The Target, The (Acorn) 220
354–357, 355, 358, 359–361 Breath Tracks (Armstrong) 216
biocentred egalitarianism 170–171 bricolage 196
biological racism 151 Brilliant Imperfection (Clare) 347–348
biopolitics 109 British Sign Language see BSL
Biopolitics of Disability, The: Neoliberalism, Broken Cord, The (Dorris) 10
Ablenationalism, and Peripheral Embodiment “Broken Ears” (Thunderbolt) 17
(Mitchell and Snyder) 58, 109, 285 Broken Kingdoms, The (Jemisin) 25
bipolar/manic depressive illness 14, 16, 17 Brontë, Charlotte 182
Birth Control Review 133 brown, adrienne maree 23
Black Crook, The (Barras) 266–267 Browne, Francis 182
black disability studies 3, 132–133, 138–139; Browning, Robert 167
Hughes: “Berry” 134–135; Hughes: “Home” Bruchac, Joseph 10
135–138; medical segregation 132, 133–134; BSL (British Sign Language) 45, 198, 236
psychiatric reform 138 built environment: and deafness 194; see also
black feminist criticism 40 accessibility
Black literature 4; see also Afro-modernism; black Bullard, Douglas 49, 51
speculative fiction “Bully, The” (Clark) 245–246, 247
Black Mountain School of poetry 241, 242 Bulmer, Alex 258, 261, 262–263
Black No More (Schuyler) 22 Burke, Kenneth 343
Black, Sheila 13 Burnet, John 46
black speculative fiction 21–22, 27–28; analysing Burney, Francis 97, 102–103
disability in 23–27; overview of 22–23 Burning in this Midnight Dream (Halfe) 216
Blacklock, Thomas 182, 186 Burroughs, William  323
Blackman, Lucy 366, 367 Bush, George W.  97
“Blind Beggar, The” (Symons) 183 Busy, Howard 11
blind beggars 183, 185–188, 190 Butler, Judith 72, 306
Blind Man’s Friend Society 191 Butler, Octavia E. 21, 23, 25
blind people, working-class 181–182 Byars-Nichols, Keely  10
Blind Summit 304, 308
Blindness, A Discursive Poem in Five Cantos (White) Cahoots Theatre  260
181; blind beggar 185–188; blind poet 188–191; Caine, Hall 47
and depiction of visual disability 181–185 Calhoun, Claudia Marie 134
380
381
Index
Called Home (Locust) 15 Chute, Hillary 357

Callipedie (Quillet) 115–116 Clare, Eli 4, 33, 175, 291, 343, 346–348, 350–351
Camilla (Burney) 97, 102–103 Clark, John Lee 46, 48, 245–248, 249
Campbell, Jane 256 class see social class
Canada: removal of Indigenous children from classism 24
communities 15 Clear Light of Day (Desai) 160–161
Canada Council for the Arts 260, 262 Close to the Knives: A Memoir of Disintegration
Canadian disability dramaturgies 2, 253–263 (Wojnarowicz) 3, 317–318, 319–325
Canadian Liberation Movement 220 “closure” 337
Canadian literature: pain poetics 212, 215–222 CODAs (children of deaf adults) 43
Canadian Literature 220 code-switching  52
Canadian Theatre Review 259 Cody, Lisa Forman 112
Cancer Vixen (Marchetto) 353 cognitive ableism 99–100, 104–105
Candland, Douglas Keith 101 cognitive difference 327, 328, 330; see also dyslexia
care 40; economic exploitation and emotional Cohen, Cathy J. 318, 322–323
labour in caregiving relationships 135; and Cole, Norma 214
t4t 38–39 Collins, Wilkie 46, 47, 120, 124, 126–127, 182
Carel, Havi 75 Collinson, Craig 330
Carlson, Licia 99, 150, 277, 312 Colonel Jack (Defoe) 104
Carolan, Turlagh  182 colonisation 236–237; Indigenous people in
Carpenter, Mary Wilson  182 Canada 215–217
Carr, Cynthia 318 Color Purple, The 268
Carter, Elmer 132–133 Colossus, The (Plath) 206
Cassuto, Leonard 58 “Comet, The” (Du Bois) 22
casting culture, in musical theatre 272–273 comic books 3, 336, 337; monstrosity in 3, 4,
Castle of Otranto, The (Walpole) 4, 110–114, 57–68; see also HOAX project (Thornton)
116, 117 Company 269
catachresis 345 Considine, Paddy 279
Cave, Marion 203, 204, 205 “Constructing a Landscape” (Hall) 231
Cecil, Lord David 90 Contained 307
Cent Mille Milliards de Poèmes (Queneau) 331 Contare i prigionieri (To count the prisoners)
Certified (Derbyshire) 262 (Rosselli) 208
Chalifour, Spencer 57 contemporary poetry, and disability 224; Lucia
Chambers, Ross 167, 176 Perillo 224, 225–229, 235, 237–238; Michele
changelings 97, 101, 103, 104, 105 Leggott 224, 225, 229–233, 235, 237–238;
Channel 4, 263 Raymond Antrobus 225, 233–238
Chaplin, Charlie 48 Contiamo infiniti cadaveri (We count endless
“character-system” of nineteenth-century corpses) (Rosselli) 208
novels 121 Contiamo infiniti morti! (We count endless dead!)
charitable model of disability 256, 261 (Rosselli) 208
Charity Organisation Society 187–188 Cooper, Dennis 323
Chatterjee, Chandra 160 Corker, Mairian 344
chemical sensitivity 348–350 Cormon, Cid 241
Chen, Mel 197, 198, 343, 346, 348–350, 351 Cost of Living, The 290
Cheyette, Brian 145 Costello, Bonnie 200
children of deaf adults see CODAs Country Wife, The (Wycherley) 97, 100–101, 117
Children’s Sea-Shore House, Atlantic City, New Couser, G. Thomas 10, 71, 164, 214, 230, 236,
Jersey 134 343, 366
“China is floating past me” (Hyde) 231 Couzelis, Mary J. 10
Chislholm, Dianne 317–318 Craik, Dinah Mulock 121–123, 124
Chivers, Sally 2, 214 Crazy Dave (Johnstone) 10
Christensen, Shelly 153 Crazy for You 269
Christmas Carol, A (Dickens) 271 “crazywoods” 14
chronic illness 74, 75, 79–80 Creeley, Robert 241, 242
chronic pain 76–78, 77, 78, 79 Creeps (Freeman) 254–255, 258, 260, 261, 262, 263
“chronic poetics” 137 Criminal Justice Act 2003 276
chrononormativity 322, 324, 325 crip: definition 37
381
382
Index
Crip Con 353 Deaf, Disability and Mad Arts: Changing the

crip poetics 214, 215; see also disability poetics Shape of Canadian Theatre 260–261
Crip poetry 1, 212, 245; see also disability poetry D/deaf and Disabled Poets Write Back 248
“Crip Poetry, or How I Learned to Love the deaf drama 260–261
Limp” (Ferris) 1, 241 D/deaf experience  3
crip theory 73 Deaf Gain 11, 44
Crip Theory (McRuer) 79 Deaf Indian writers 10–11
Crip Time 75–76, 84–85, 86, 89 Deaf Lit Extravaganza 249
cripcature 272 D/deaf poetry 245–248, 249; Deaf
crip-face  272 poetics 225
cripped trans narrative 37 Deaf Poets Society 249
“‘Cripping’ the Comic Con” 353 Deaf Republic (Kaminsky) 236
Cripping the Stage 263 “Deaf School” (Hughes) 236–237
cripping up 272, 290, 295 Deaf and sign language literatures 4, 43–45;
critical disability perspectives 2, 74, 303 breaking English 49–50; “hearing line” in
Crosby, Christina 343, 345–346, 350–351 literature 45–48; phonocentric norms and
cross-media arts 327–328, 340; Alison Stewart’s sign language disconstruction 48–49; vexing
textile art 327, 328–330, 329, 340; Deborah the print page 50–51; writing ASL in English
Humm’s multimedia productions 327, 331–334, literature 51–55
332, 340; Ravi Thornton’s HOAX project 327, deaf space 194
334–337, 336, 338, 339, 339–340 Deaf Studies 44
Crow, Liz 74, 224 “Deaf World” (Valli) 197–198, 200
Cthulhu 84, 85, 86 Deafening Modernism (Sanchez) 193
Cultch theatre 262 “DEAF-INISM” (Haroun)  50–51
cultural disability studies 35 deafness 17; extent of 44; and modernism
cultural model of disability 278 193–201; as relationality 194; and US language
cultural trauma: Indigenous people in Canada politics 195–196
215–217 DeafWest 253, 265, 290
cure, rejection of 11 DEAF-WORLD 44–45, 52
Curious Incident of the Dog in the Night-Time, The Deans, Mark 307
(Haddon) 168, 174–175, 367, 368, 369 “Dear Hearing World” (Antrobus) 233
Curry, Steph 268 death 325
Death, Disability, and the Superhero:The Silver Age
Dacre, Charlotte 117 and Beyond (Alaniz) 353
Dacre, Kathy 258 Decottignies, Michele 259
Dakota Access Pipeline 19 “Deep End” (Shawl) 25
“Dandelion” (Polk) 52 Defoe, Daniel 97, 101–102, 104
“Dandelions” (Valli) 245 degeneracy 132–133; eighteenth-century
Daniel Deronda (Eliot) 128–129 perspectives on 110, 114–116
Dark Matter (Thomas) 23 Dekanawida 18
Dark Princess (Du Bois) 136 Delany, Samuel R. 23, 324
Darwin, Charles 167, 169, 176 Deleuze, Gilles 273, 350
DATT (Deaf Artists and Theatre Toolkit)  260 Democracy in America (Tocqueville) 195
Dave, Paul 280 “demyelination” 331, 332; see also MS (multiple
David, Lennard 193, 214 sclerosis)
Davidson, Michael 1, 71, 230, 242 Depression for Dummies 362
Davis, Jeffrey 11 Derbyshire, Jan 261, 262
Davis, Lennard J. 33, 35, 243 Derivative of the Moving Image (Bartlett) 244
Day, Charles 191 Derrida, Jacques 48, 78–79
Dead Man’s Shoes (Meadows) 277–278, 279–287, Dery, Mark 23
281, 283, 284, 287 Desai, Anita 157, 160–161, 165
D/deaf: definition/terminology 43, Desani, G.V. 158
43–44, 201n1 “Desolate Spot, A” (Fransman) 337
Deaf American Poetry 245, 249 Despite This Flesh 245
Deaf Artists and Theatre Toolkit see DATT devil, belief in 100
deaf characters in Western literature 39–40, 47 Devil in Silver, The (LaValle) 83, 86–88, 92
Deaf culture 11, 245 DIA (Leggott) 231
382
383
Index
Diagnostic and Statistical Manual of Mental Disorders Dolmage, Jay Timothy 271, 361
see DSM Donaldson, Elizabeth J. 3, 353–365
Diallo, Amadou 87 doppelgangers 113–114
Dickens, Charles 46, 47, 125–126, 127, 182, Dorris, Michael 10
188, 271 “double oppression” 145; see also intersectionality
Dickinson, Emily 204 Down’s Syndrome 10, 304–305
diegetic disabilities in musical theatre 266, 267, Dracula (Stoker) 89
271–272 Dreamland Theater 83, 84–86, 92
digital publishing platforms 366, 369 DSM (Diagnostic and Statistical Manual of Mental
disability: cultural model of 278; definitions of 24; Disorders), American Psychological Association
as human variance 278–279; and impairment 31, 33, 361–362, 368
71, 74, 75; individual model of 229; journey Du Bois, W.E.B. 22, 132, 133, 135, 136
metaphor of 333; as loss 230; medical model of duCille, Ann 40
33, 71, 248, 278, 303, 367; as a metaphor Due, Tananarive  23
269–271; and poverty 63; as social Duggan, Eileen 231
categorization 321, 322; social constructivist Dunlap-Shohl, Peter  353
models of 327; social model of 71, 74, 75, 214, Dwoskin, Stephen 76–77
229, 278, 303, 328; as a verb 2, 194; as a Western dysfunction 121; dysfunctionality of the normative
construct 18; see also intersectionality body 168
“disability aesthetics” 328–329 dyslexia 21; Fabricback Novel (Stewart) 327,
Disability in Comic Books and Graphic Narratives 328–330, 329, 340
(Foss, Gray, and Whalen) 353
Disability and Difference in Global Contexts Eagleton, Terry  280
(Erevelle) 58 Eastman, Gilbert 54
disability drag 272 Eastwood, Alexander 39, 40
disability drama: disability dramaturgies, Canada Echo Maker, The (Powers) 174
253–263; and intersectionality 290–301; Ecocriticism 12
see also American stage musicals; Dead Man’s Ecological Other, The (Ray) 15
Shoes (Meadows) education, and Deaf culture 11
“disability gain” 71 Edwards, Jason 172
Disability and Literature (Hall) 214 Ehlers-Danlos syndrome  75–76
disability poetics 13; impediments to 214–215; Eigner, Larry 230, 241–242, 245, 249
see also crip poetics El Defo (Bell) 353
disability poetry 241–249; see also crip poetics Electra 204
Disability Politics: Understanding Our Past, Changing “Elephant” (Perillo) 229
Our Future (Campbell and Oliver) 256 Eliot, George 124, 128–129
“disability rights model” 32 Elkins, Patrick 85–86
disability studies 12, 17; and care 38; differentiation Elkins, Stanley 168, 171–174
between disability and impairment 71, 74; Elliott, Ezekiel 268
and intersectionality 58–59, 290–301 Elliott, Paul 280
Disability Studies Reader, The (Davis) 33 Ellison, Ralph 138, 139
Disability Writers Caucus  248 Elmwood,Victoria  357
disability-as-performance framework  265 embodiment 13, 74, 83, 85, 86, 90, 109, 110, 112,
disabled sexualities 259–260 116, 117, 193, 209, 215, 227, 228, 241, 271,
Disabled State, The (Stone) 322 272–273; see also antinormative narratives of
disabled veterans 299–300 embodiment
“disabled villain” 214 Emeney, Johanna 3, 224–240
Discovery of India, The (Nehru) 157 Emergence: Labeled Autistic (Grandin) 366,
“discursive dependency” narratives 71 367, 368
disgust 37 “Emily and her Sisters” (Leggott) 231–323
Disney 268 Emin, Tracey  328
“Distantism” (Clark) 249 emotional labour in caregiving
distributive justice 322 relationships 135
Dixon, Patrick 76–77, 77 “Empire Strikes Back, The: A Posttranssexual
Doctor Marigold (Dickens) 46 Manifesto” (Stone) 32, 39–40
Documento (1966-1973) (Rosselli) 208 Endgame 290
Dodd, Chris 260 Enforcing Normalcy (Davis) 193
383
384
Index
English language: American English 195; broken figura 346

English 49–50; English as a Second Language figural, the 34
(ESL) 53–54; glosses 52, 53 financial assistance for disabled people: US
“Enjambed Body, The: A Step Towards a Crippled 321–322
Poet” (Ferris) 243, 245 Finch, Anne 98, 103–104
Enlightenment, The  99 Findley, Timothy  214
enmindment 83 Fine Balance, A (Mistry) 159–160
Ensemblist, The 268 Fine, Michelle 145
environmental toxins and toxicity 348–350 Finger, Anne 350
Epileptic (B.) 353 fingerspelling, in ASL (American Sign
epiphanies 144, 145 Language) 52, 53
“equipment for living” 343, 344, 345, 346, 349 Fischer, Helene 57–58, 65–68
Erdrich, Louise 10 Fisher, Jane 305
Erevelles, Nirmala 12, 38, 58, 292 Flacks, Diane 263
Erivo, Cynthia 268 flesh-made cloth theme 77–78, 78
ES Dance Instrument 258 Floyd, Kevin 167
escapism 89 Focus on Disability and Deaf Arts in Canada
ESL (English as a Second Language) 53–54 (Jacobson and McMurchy) 260
Esmail, Jennifer 46 FoldA: Festival of Live Digital Arts 262
Essay concerning Human Understanding, An (Locke) folk medicine 133–134
101, 102 Food Court 307
Essay on Projects (Defoe) 102 fools 308
Ethics of Vulnerability (Gillson) 305 Fordism 168, 320, 324
eugenics 114–115, 132, 133, 260 “formal containment” 331
euthanasia 71 Forney, Ellen 354, 361–362, 363
Exile and Pride (Clare) 346–348 Foss, Chris 3, 353
exploitation, in caregiving relationships 135 Foster, Lindsay 307–308
Foster, Sutton 272
Fabricback Novel (Stewart) 327, 328–330, Foucault, Michel 83, 116, 171
329, 340 Fox, Ann M. 4, 290–302
“fabulous invalid” 290 Fradley, Martin 280
Faces of Intellectual Disability, The (Carlson) 277 fragmentation 196
Factory Theatre  254 frames 306–307
“Facts of Life, The” (Ferris) 244 Frankenstein 82–83
Fall Down Seven Times, Get Up Eight (Higashida) Fransman, Karrie 337
366, 374 Frazer, Bob 257
“false consciousness” 75 freaks 58, 59, 62, 63, 64, 66, 76, 105, 172, 174; freak
fantasy 82 shows 33, 34, 102, 103
Farmer, Joyce 353 Freaks, Geeks, and Asperger’s Syndrome (Jackson)
Farnell, Brenda 11 366, 368
Farr, Jason S. 109–119 Free, Melissa 125
Fawcett, Henry 120 Freeman, David 254–255, 258, 260, 261,
Felman, Shoshana 206, 209 262, 263
Female Forms: Experiencing and Understanding Freeman, Elizabeth 322
Disability (Thomas) 226 French, Sally 344
feminine/femininity 347, 348 Freud, Sigmund 113–114, 115
feminism 245 Friatelli minori (Younger Brothers) (Pincherle
Feminist, Queer, Crip (Kafer) 58–59 Moravia Rosselli) 204
Fences 290 Friedlander, Christine 73
Ferris, Emil 57–58, 62–65, 68 Fries, Kenny 245, 344
Ferris, Jim 1, 4, 13, 215, 242, 243, 244, 245, From the Sustaining Air (Eigner) 242
248, 249 Frye, Northrop 83, 147–148
Ferris, Madison 290 Frye, Phyllis Randolf 32
Fetal Alcohol Syndrome 10 Full Circle Community Center 84, 85
“ficelle” 150 functional idiocy 98–99, 100, 101, 103–104
Fictions of Affliction (Holmes) 185–186 Furneaux, Holly 122
“Fights, The” (Acorn) 220, 221 futurity, trans as 35
384
385
Index
Gabbard, D. Christopher 3, 97–108 Grace, Patricia 10

Gallaudet College 11, 17, 46 Graeae Theatre Company 263, 280
Gallaudet, Edward Miner 46 grammar 344; see also touch, grammar of
Gallaudet, Thomas Hopkins  45, 46 Grand Coulee Dam, Washington State 12
Galton, Francis 114, 115 Grandin, Temple 366, 367, 368
Gandhi, Indira 158, 159 Graphic Medicine Manifesto 353
Ganesh and the Third Reich 307 graphic memoirs 3, 353–365; and psychiatric
Garland-Thomson, Rosemary 58, 71, 76, 270, 273, disability 353–364
278, 357 graphic novels: monstrosity in 3, 4, 57–68; see also
“gaze, the” 243 HOAX project (Thornton)
gender 25; and care 38; and functional idiocy Gravendyk, Hilary 137
103–104; and intersectionality 291, 292, 293, Gray, Jonathan W.  353
301, 344, 346; see also Exile and Pride (Clare) Great Dictator, The (Chaplin) 48
“gender identity disorders” 31 Grech, Shaun 12, 13
genetic diversity 168 Green, Justin 354–357, 355, 358, 359–361
Genius of the Blind (White) 182, 188 Grimes, Sophie 229
genre 3–4; and deaf literature 49–50 Grosz, Elizabeth 169, 176
genre play 84, 85, 87 Gruppo ‘63 204
genre writing 82, 83 Guattari, Felix 273, 325, 350
“geographies of writing” 347, 348 Gulliver’s Travels (Swift) 3, 98, 104–106
George, David 309
Georgia Review 245 Habermas, Jürgen 213, 238n2
Gerland, Ginila 372 Haddon, Mark 168, 174–175, 367, 368
Ghosh, Amitav 162 Haggerty, George 110
ghosts 78–79 Hairston, Andrea 23
Gilbert, Michael 276 Halberstam, Judith 35, 174
Gilman, Charlotte Perkins 176 Hale, Sarah Josepha 90
Gilman, Sander 145–146, 151 Halfe, Louise 216
Gilson, Erinn 305 Hall, Alice 1–5, 214, 327, 351
Giron, Leonardo M. 337 Hall, Bernadette 231
Gladwin, Bruce 307 Hall, Kim Q. 344
glancing 175 Halliwell, Martin 100, 142
Glass Box, The (Harris, Moy and Uchatius) Hammerstein, Oscar 253
259–260 Hampson, Dennis 182
Glass Menagerie, The 290 “Hands” (Valli) 198
Glass, Philip 332 Handtype Press 245
Glorious Revolution 1688 112 Hansen, Rick 253–254, 261
Glydon, Howard 47 Hargrave, Matt 3, 278, 279, 287, 303–313
Godfrey, Sarah 280 “Harlem Renaissance” 132
Gods Without Men (Kunzru) 373 Harmon, Kristen 3, 43–56
Goffman, Erving 243 Harmsen, Machteld 357
Gold Bug Variations, The (Powers) 168–171 Haroun, Abiola 50–51
Gold, Sam 290 Harpin, Anna 276–289
“Goldilocks in Denial” (Clark) 247–248 Harris, Daniel 235–236
“Good Bones” (Smith) 244 Harris, Emily Cumming 231–323
Goodey, C.F. 97, 98, 99, 101 Harris, Jim 214
Goodley, Dan 291, 368 Harris, Kyla 259
Gopal, Priyamvada 156 Hart, Moss 290
Gordon, Avery 34 Hart, Phoebe 287
Gordon, Barbara 58 Harvey, David 171, 321
Gore, Clare Walker 120–131 Harvey, Matthea 84, 90–92
Gothic 4, 70, 79–80; flesh-made cloth theme Harvey, W.J. 147, 150
77–78, 78; ghosts theme 78–79; live burial Hass, Robert 225
theme 76–77, 77; perils of 70–72; stigmaphilia hate crime 276–277
in a minor key 72–75; vampire theme 75–76; Hatfield, Charles 356
Walpole: The Castle of Otranto 4, 110–114, Hausman, Bernice 35
116, 117 Hayter, Gemma 276
385
386
Index
Hayworth, Rita 267–268 Hospital Poems, The (Ferris) 245

health inequalities 24 Hospital Suite (Porcellino) 353
Heaney, Emma 34 Household Words (Dickens) 188
hearing line 193; in literature 45–48 Huber, Sonya 73
Heart of the Hydrogen Jukebox, The (Lerner) 197 Huggan, Graham 158
Heartland (Leggott) 231 Hughes, Bill 71, 229
Heaven on Wheels (Couser) 164 Hughes, Langston 132, 133, 134–138, 139
heavy metal poisoning 348–350 Hughes, Ted 236–237
Hedva, Johanna 73 Human Genome project 168
Heidegger, Martin 349 human identity 100
Heir of Redclyffe, The (Yonge) 123 human rights 369
Hemophiliac’s Motorcycle, The (Andrews) 245 humility 200
Henry, Joshua 272 Humm, Deborah 327, 328, 331–334, 332, 340
Herrnstein, Richard 151 Hurley, Erin 259
Hide and Seek (Collins) 46, 47 Hurston, Zora Neale 132, 133, 139
Higashida, Naoki 366, 368–369, 374 Hutton, R.H. 122
high/low functioning, in autism 369 hybridity 3, 58, 84
Highway, Thomas  214 Hyde, Robyn 231
Highway, Tomson  10 hyperempathy 24
Hillyer, Barbara 372
Hilton, Leon J. 3, 317–326 “I estranged” 73
Hinton, Janet 261 IDD (intellectual and developmental disability)
Hir (Mac) 292, 296–301 97–98; Burney: Camilla 97, 102–103; Defoe:
historical trauma 209–210 Mere Nature Delineated: Or, A Body without a
History of Intelligence, A (Goodey) 99 Soul 97, 101–102; Finch: “The Introduction”
History of Madness (Foucault) 171 98, 103–104; functional idiocy 98–99, 100, 101,
History of Sexuality, The, Volume One: An 103–104; gender and race 103–104; intelligence
Introduction (Foucault) 114–115 society 99–101; status idiocy 98, 99, 101; Swift:
history, and writing 209 Gulliver’s Travels 98, 104–106; Wycherley: The
HIV/AIDS 318, 324, 325; see also Close to the Country Wife 97, 100–101; see also intellectual
Knives: A Memoir of Disintegration (Wojnarowicz) disability; learning disability
HOAX project (Thornton) 327, 328, 334–337, identity, intersectional model of 4
336, 338, 339, 339–340; HOAX My Lonely idiocy 99; functional idiocy 98–99, 100, 101,
Heart 334, 338; HOAX Our Right to Hope 334, 103–104; status idiocy 98, 99, 101
337, 339, 339; HOAX Psychosis Blues 334, 336, idiot 97, 99, 101
336–337 “Idiots First” (Malamud) 142; community
Hochman, Baruch 147 and solidarity 152–153; Jewish “superior
Hocquenghem, Guy 323 intelligence” myth 151–152; and otherness
Hoffman, Dustin 280, 368 144–146; representations of intellectual
Hogan, Patrick Colm 157 disability 146–150, 148; story outline 143
Hogarth, William  99 If I had Wheels or Love (Miller) 245
“Holding Up” (Wright) 54 ill chronicity 137
Holmes, Martha Stoddard 185–186 illness 24, 74, 75, 79–80; journey metaphor of 333
Holocaust, the 282, 354 Illness as Metaphor (Sontag) 136–137
Homer 182, 188 images, and signed languages 196–197
Homosexual Desire (Hocquenghem) 323 Images of Idiocy:The Idiot Figure in Modern Fiction
homosexuality 323 and Film (Halliwell) 142
Hopkinson, Nalo 22, 23, 24, 83 Imaginary Safe House 249
Horejes, Thomas  201n1 imagism 196–197
Horrell, Barrie-John  276 Imarisha, Walidah  23
horror, and disability 82–84, 92; Dreamland impairment 71, 74, 75, 214, 224, 327; “impairment
Theater: “The Language of Time” puppet show effects” 226
83, 84–86, 92; Harvey and Porter: Of Lamb 84, “Imperfect Enjoyment, The” (Earl of Rochester,
90–92; LaValle: The Devil in Silver 83, 86–88, 92; John Wilmot)  116
Priest: Maplecroft 83, 88–90, 92 “In presa ad uno shock violentissimo”
Horror of Red Hook, The (Lovecraft) 86 (Rosselli) 206
Hoskin, Stephen 276 “In the Name of Pain” (Seibers) 212
386
387
Index
incarceration 25 I’ve Heard the Vultures Singing: Field Notes on Poetry,

inclusion 305 Illness, and Nature (Perillo) 227
inclusivity, in actor training 258 “I’ve Tasted My Blood” (Acorn) 220–221
Indian Child Welfare Act 1978, US 15
Indian fiction see Anglophone Indian fiction Jackson, Luke 366, 368
Indigenous literature 4, 9–10; blood 16–17; Jackson, Sandra 21
colonialism 9, 12, 14–16, 18; land 9, 10, Jacobs, Dale 361
12–14, 18; sovereignty and nation 9, 10–12, 18; Jacobson, Rose 260
tradition and Indigenous epistemologies 17–19 James, Henry 129, 150
Indigenous people: pain of colonialism in James, Jennifer 132
Canada 215–217; removal of children from Jamison, Leslie 73
communities 15, 216 Jane Eyre (Brontë) 182
Indigenous resurgence movement 19, 216 Janz, Heidi 261
Indigent Blind Visiting Society 190–191 Japanese Sign Language 45
individual model of disability 229 Jarman, Michelle 10, 86–87
Individuals with Disabilities Education Act Jarrett, Simon 98
1975 49 Jemisin, N.K. 23, 25, 26–27
Infect Your Friends and Loved Ones (Peters) 35–38, Jewish communities: community and solidarity in
38–39, 40 152–153; “superior intelligence” myth 151–152;
“Infinities of Forms: Disability Figures in Artistic see also “Idiots First” (Malamud)
Traditions” (Snyder) 215 Jewish Disability Awareness Month 153
Ingold, Tim  330 Jim Crow segregation 132
institutionalization 25, 85 Johansson, Sven 258
intellectual disability 3, 142; representation as a John, Gareth 304, 306, 310, 311, 312
“failed mimesis” 146–150, 148; terminology John Halifax, Gentleman (Craik) 121–123, 124
143; see also Dead Man’s Shoes (Meadows); IDD Johnson, Beth 283–284
(intellectual and developmental disability); Johnson, Lisa 291–292
“Idiots First” (Malamud); learning disability Johnson, Lyndon B. 321
intellectual sovereignty 10 Johnson, Samuel 98–99
intelligence society 99–101 Johnston, Kirsty 2, 253–264
interactional model of disability 278 Johnstone, Basil 10
interdependency 343, 344 Jones, Ian 336
interlanguage 53–54 journey metaphor of illness and disability 333
International Conference on Transgender Law and Jung, Carl 360–361
Employment Policy, 1996 32
International Sign see IS Kadoura,Yousef 258, 259
International Year of Disabled Persons, The Kafer, Alison 33, 35, 37, 58–59, 74, 109, 291
(1981) 18 Kahlo, Frida 226–227
Interpreter of Maladies, The (Lahiri) 161 Kaleidoscope 241
intersectionality 4, 58–59, 63; and black speculative Kanga, Firdaus 157, 164–165
fiction 25; and disability drama 290–301; and Kanner, Leo 366, 367
gender 291, 292, 293, 301, 344, 346; and race Kant, I. 38
291, 292, 293–294, 295, 296, 301, 346; and sex Kaufman, George S. 290
344; and sexuality 291, 292, 301, 346; and social Kavanagh, Arthur Macmurrough 120
class 291, 292, 293, 296, 301, 346 Kearns Miller, Jean 370, 372, 373; see also Women
intersubjectivity 212–214 from Another Planet? Our Lives in the Universe
Intertribal Deaf Council 11 of Autism
“Into the Scene and Its Impact on Inclusive Kebbel, Toby 279, 280
Performance Training” (Dacre and Keddie, Nell 77–78, 78, 79
Bulmer) 258 Kelleher, Paul 103
“The Introduction” (Finch) 98, 103–104 Kelley, Walter  P.  11
Inuit Traditional Song  217 Kelsey, Penelope 17
Irving, Lee 276 Kendall,Vivian 226–227
IS (International Sign) 45 Kenyan Sign Language 45
Isherwood, Charles 292 Kerr, Kevin 257
Islay (Bullard) 49 Kerr, Michael 276
Itard, Dr. Jean-Luc 101–102 Kesey, Ken 86
387
388
Index
“Key, The” (Welty)  46 Levinas, Emmanuel 213, 217

KickstART 257, 258 Levinson, Barry 368
Kidd, Ian James 75 Lewiecki-Wilson, Cynthia  354
“Kilned” (Perillo) 227, 228 Lewis, Matthew G. 117
Kim, Jina B. 2, 193, 194 Lewis,Victoria Ann 254–255
Kinder, John 299 “Lexism” 330
King Lear (Shakespeare) 308 LGBTQ perspective in poetry 245
King, Stephen 84 liberalism 168
Kinkelstein,Vic  229 libertinism 110, 116–117
Kipling, Rudyard 156 librettos 269
Kittay, Eva Feder 369 “libtards” 97
Klages, Mary 122, 182 Life magazine 267–268
Kleist, Heinrich von 311 life writing 3, 343, 344
Kolkata Sign Language 45 lifeworlds, of contemporary poets 224, 229
Krentz, Christopher 45, 46, 47, 193 Light in the Piazza, The 272
Krip-Hop Nation Graphic Novel (Moore) 353 Lilith’s Brood (Butler) 25
Krumins, Diane 370; see also Women from Another Lindsay, Rachel 362, 364
Planet? Our Lives in the Universe of Autism “Line Breaks the Way I See Them”
Kunzru, Hari 373 (Simpson) 246
Kuppers, Petra 3–4, 82–93, 212–213, 272–273, Linett, Maren 193, 194
280, 312, 345 Linton, Simi 2, 327, 333
Kuusisto, Stephen 245 Lion King (Disney) 268
literalism 34
LaCapra, Dominick 359 “Literature as Equipment for Living” (Burke) 343
Ladino, Jannifer 199–200 Little Green Man (Armitage) 373
LaFargue Clinic, Harlem 138 Liu, Marjorie 57–58, 59–62, 65, 68
Lahiri, Jhumba 157, 161–162, 165 live burial theme 76–77, 77, 78, 79
Lambeth, Laurie Clements 2, 227, 331, 333 living dead theme 75–76
Lang, Stephen 227, 228 Locke, John 101, 102, 103, 104, 105
Lange des Signes Français see LSF Locust, Carol 11, 15
language: and ableism 269; language politics, US London, Jack 47
195–196; and sex 345; see also signed languages London Labour and the London Poor (Mayhew)
“The Language of Time” (Dreamland Theater) 83, 185, 186
84–86, 92 “Long Goodbyes” (Clark) 245
Larsen, Nella 138 Lorenzo’s Oil 169
Latimer, Tracy  259 loss, disability as 230
LaValle,Victor 83, 86–88, 92 Lost Girls (Moore and Gebbie) 91
Law and the Lady, The (Collins) 126–127 Love, Heather 73, 80
Leader, Jennifer 200 Lovecraft, H.P. 84, 86, 88, 89
Leadley, Allison 259–260 Lovern, Lavonna L. 11, 18
Leake, Elizabeth 3, 203–211 Lovesay, Olover 128
“learning difficulty” terminology 143 LSF (Lange des Signes Français) 45
learning disability 3, 303–305; as an aesthetic Luck is Luck (Perillo) 228
potential 303; and hate crime 276–277; Lucy’s Story: Autism and Other Adventures
vulnerability as complicity 309–311; (Blackman) 366, 367
vulnerability as interruptive value 306–309; Luczak, Raymond 53, 245
vulnerability as structural support 311–313; Lyon, Janet 100
see also Dead Man’s Shoes (Meadows); IDD “Lytopedia” (Santini) 53
(intellectual and developmental disability);
intellectual disability Mac, Taylor 292, 296–301
Leavitt, Sarah 353 Macbeth (Shakespeare) 98
Lefebvre, Henri 318–319, 321, 323, 324, 333 Macdonald, Anne Marie 214
Leggott, Michele 224, 225–229, 229–233, 235, Mad at School (Price) 354
237–238, 237–238 mad studies 354
L’Engle, Madeleine 151 Madness and Arts World Festival 259
Lerner, Miriam 197, 198 Madonna Swan: A Lakota Woman’s Story
lesbian literature: Maplecroft (Priest) 83, 88–90, 92 (Swan) 15–16
388
389
Index
madwoman figures in comics 357, 358, 359, Mencken, H.L. 196

359–360 Mengaldo, Pier Vincenzo  207
Magic Barrel, The (Malamud) 144, 150 mental illness 354; and drama 259, 262
Magic Kingdom, The (Elkins) 168, 171–174 Mercy Killing or Murder:The Tracy Latimer Story
“Magic Phin, The” (Shawl) 25 (Decottignies) 259
“Magic Words/Naksuk” (Inuit Traditional Mere Nature Delineated: Or, A Body without a Soul
Song) 217 (Defoe) 97, 101–102
Malamud, Bernard 46, 142–147, 149–150, meritocracy 99
151–153 “Message in a Bottle” (Jemisin) 26–27
Man and His Symbols (Jung) 360–361 metaphor, strained 345, 346
Man, Paul de 101 Meunier, Jen 13–14
Mansfield, Katherine 229 Meyerding, Jane 370, 372; see also Women from
Mansfield Park (Austen) 110 Another Planet? Our Lives in the Universe
Mantel, Hilary 160 of Autism
manualism 45, 48 “Miami Airport” (Antrobus) 234
Maplecroft (Priest) 83, 88–90, 92 Michie, Helena 125
Marbles: Mania, Depression, Michelangelo, and Me Miles, Sean 276
(Forney) 354, 361–362, 363 Milk and Honey (Leggott) 230
Marchbanks, Paul 149 Mill on the Floss, The (Eliot) 124
Marchetto, Marisa Acocella 353 Millenium Hall (Scott) 109
Margolin, Uri 147 Miller, J. Hillis 153
marketing 242 Miller, Joshua 195
marriage plots in nineteenth-century novels, and Miller, Kelly 132–133
disability 120–121, 129–130; angel with a legacy Miller, Monica 136
paradigm 127–129; healing storyteller paradigm Miller, Nancy 75
124–127; queer go-between paradigm 121–124 Miller,Vassar  245
Martin, Brent 276 Milne, Laura 276
Marvel Monsters #1 57 Milton, John 181, 182, 188–190
Marx, Karl 318 Mind the Gap 307
Mary Jocelyn, Sister 146 Minich, Julie Avril 23–24, 31–32, 45, 138, 193, 194
masculine/masculinity 347, 348; in Dead Man’s Minter, Shannon 32
Shoes (Meadows) 282–285; in Hir (Mac) “Missing Larry” (Davidson) 242
298, 299 Mistry, Rohinton 157, 159–160, 163, 165
mate crime 276–277 Mitchell, Breon 329
Maus (Spiegelman) 354, 357, 359 Mitchell, David T. 3, 32, 33–34, 47, 58, 71, 109,
May, Charles E. 146 134, 149, 150, 156, 162, 167–177, 205, 265, 270,
May I Take Your Arm? (Bulmer) 262 271, 277, 282, 285, 287, 368–369
Mayhew, Henry 185, 186 Mitchell, Sally 123
Mazique, Rachel 45 modernism 139; and deafness 193–201; see also
McCloud, Scott 337 Afro-modernism
McCullers, Carson 195 Modernity and the Holocaust (Bauman) 282
McDonald, Anne 84–85 Mollow, Anna 58, 318
McMurchy, Geoff 260 Momoday, N. Scott 10
McRuer, Robert 58, 73, 78, 79, 109, 285, Monster Girl (Fischer) 57–58, 65–68
291–292, 318, 351 Monsters at Work 57
McVeigh, T.  305 Monstress (Liu and Takeda) 57–58, 59–62, 65, 68
Meadows, Shane 277–278, 279–287, 281, 283, monstrosity 71–72, 76; in graphic novels and
284, 287 comic books 3, 4, 57–68
Medicaid 321 Moody-Freemen, Julie E. 21
medical model of disability 33, 71, 248, 278, Moonstone, The (Collins) 124
303, 367 Moore, Alan 91
Medicare 321 Moore, Leroy F. 353
Meekosha, Helen 12, 156 Moore, Marianne 194, 199–201
Meet Fred (Hijinx Theatre) 304, 306–313 Moor’s Last Sigh, The (Rushdie) 156, 157, 158–159
Memoir upon the Formation of a Deaf Variety of the Morrden, Ethan 267
Human Race (Bell) 48–49 Morrison, Aimée 374–375
Menabò (Rosselli) 204, 205 Morrison, Toni 23, 286, 287
389
390
Index
Morton, C.H. 267 Nehru, Jawararlal 157, 158

Morton, Stephen 157 Neilson, Shane 212–223, 249
mother-blame, and autism 367–368 Nelson, Alondra 22
Motherwell, Robert 333 Nelson, Jennifer 50
Mount Rainer 199, 200 neoliberalism 168, 278, 280, 322
mourning 74 Nersshi, Bill 374
Moy, Watson  259 Neurotribes (Silberman) 373
MS (multiple sclerosis): Deborah Humm 327, 328, neurotypical see NT
331–334, 332, 340; Lucia Perillo 224, 225–229, New Moon’s Arms, The (Hopkinson) 24
235, 237–238; Patrick Elkins 168, 171–174 New Narrative literary scene 323
Mukherjee, Meenakashi 156 New Right 322
Mukherjee, Pablo 163 New York City, in the 1970s 320
multiple chemical sensitivity 348–350 “New Zealand Christmas, A” (Duggan) 231
multiple sclerosis see MS Newnham, Richard 307–308, 311
Mulvey-Roberts, Marie  73 Newsfabrics (Stewart) 328, 329, 329
“MuMu” (Turgenev) 46 Newton, Isaac 105
Muñoz, José Esteban 269 Next to Normal 268, 272
murders, of people with learning disabilities Ngai, Sianne 37
276–277 Niblo’s Garden 266
Murray, Charles 151 Nicholas Nickelby (Dickens) 127
Murray, Stuart 156, 366, 367, 368, 374 Nichols, bp 217–219
muscular dystrophy 18 Nishida, Akemi 135
Music Appreciation (Skloot) 245 Nixon, Richard 321–322
musicals/musical theatre see American stage non-verbal communication  369
musicals; HOAX project (Thornton) normalcy, concept of 243
Musset, Alfred de 45–46 Northen, Michael 241–250
My Body Is a Book of Rules (Washuta) 16–17 “Nothing about us without us!” 265, 375
My Degeneration: A Journey Through Parkinson’s Nottage, Lynn 292–296, 301
(Dunlap-Shohl)  353 novel, the, origins of 3
My Favourite Thing is Monsters [Book One] (Ferris) Nowlan, Alden 219
57–58, 62–65, 68 NT (neurotypical) 369–370
“My Most Humiliating Jim Crow Experience” Nussbaum, Felicity 100
(Hurston) 133 Nussbaum, Martha 369
Mythos cosmology 84
OCD (obsessive compulsive disorder) see
NAIS (Native American and Indigenous Studies) Green, Justin
9, 10, 15 “Octopus, An” (Moore) 194, 199–201
Namaste,Vivian  34 Oedipus Rex 290
Nandy, Ashis 163 Of Lamb (Harvey and Porter) 84, 90–92
Napoli, Donna Jo 198 Of Mice and Men (Steinbeck) 148
“narrative prosthesis” 71, 134, 150, 205, 265; in “Of the Training of Black Men” (Du Bois) 133
musical theatre 266, 270, 271 Ojibwe language 14
Narrative Prosthesis: Disabilities and Dependencies of Oklahoma! (Rodgers and Hammerstein) 253, 290
Discourse (Mitchell and Snyder) 167, 270 Okorafor, Nnedi 23
narrators: African-American 86; unreliable 86 “Olive” (Leggott) 232–233, 235, 237
National Arts Centre English Theatre 260–261 Oliver, Andy 337
National Association of the Deaf 47 Oliver, Kelly 335
National Autistic Society 368 Oliver, Mike 256
Native American and Indigenous Studies see NAIS Olivier Awards 368
Native American Renaissance 10 Olson, Charles 242
Native Americans: and linguistic compliance 195; “On Human Loneliness” (Hughes) 133
see also Indigenous literature; NAIS (Native “On the Marionette Theatre” (Kleist) 311
American and Indigenous Studies) Once More, With Feeling: Five Affecting Plays
Native Son (Wright) 133 (Hurley) 259
Native Studies Keywords (Treves, Smith, and One Flew Over the Cuckoo’s Nest (Kesey) 87
Raheja) 10 Only Bread, Only Light (Kuusisto) 245
Naturalization Act 1906, US 195 “Only Way Signing Can Kill Us, The” (Clark) 245
390
391
Index
oralism 45, 196 Playwrights Theatre Centre see PTC

Oregon Shakespeare festival 292 “Poem With Fat Cats in the Background”
Origins of the Species (Darwin) 167 (Acorn) 221
Orlando (Woolf) 34 Poems by Mr.Thomas Blacklock 186
“Orphan Mute, The” (Burnet) 46 Poeti italiani del novecento (Mengaldo) 207
Orwell, George 308 poetry 2, 3; ASL (American Sign Language)
Ossian 188 197–201; deaf poets 46; in trans and disability
Osteen, Mark 214 culture 34; see also contemporary poetry, and
Othello (Shakespeare) 285 disability; Crip poetry
Other, the 142; in “Idiots First” (Malamud) police violence 86–87, 234–236
144–146 “political-relational model”  74
Other World  324 Polk, Allison 51, 52
Our Mutual Friend (Dickens) 125–126 Poole, Adrian 282, 286
Out of the Crazywoods (Savageau) 14 Poor Miss Finch (Collins) 120
out-of-culture adoption  15 Pope, Alexander 104
Oxford Handbook to Canadian Literature 214 Porcellino, John 353
Porter, Amy Jean 84, 90–92
Padfield, Deborah 76–78, 77, 78, 79 Portrait of Charles Lamb, A. (Cecil) 90
Pafunda, Danielle 73 Portrait of a Lady, The (James) 129
Page, Tim  230 “positive attitude” 75
pain 278–279; chronic 76–78, 77, 78, 79; narrative “Positive Obsession” (Butler) 21
preferences for 214–215 postcolonialism 14–15, 142
pain poetics 212; Canadian literature 212, “Poster Child” (Luczak) 53
215–222; cultural trauma, location, agency post-structuralism  74
215–222; impediments to disability poetics Pottle, Adam 260
214–215; intersubjectivity 212–214 Pound, Ezra 196, 200
Pamela (Richardson) 116 poverty, and disability 63
Paradise Lost (Milton) 181 “Power” (Ruffo) 216–217, 219, 220
Paris, Damara Goff 11 Powers, Richard 168–171, 174
Pasolini, Pier Paolo 204, 205 Prakash, Gyan 157
Pastrana, Julia 58 Pratt, Mary Louise 236
Patsavas, Alison 212, 214 Preinvented World 319–320, 321, 324, 325
Paulson, Michael 253 Prelude, The (Wordsworth) 183
pearl imagery, in Rosselli’s poetry 207–208 Premchand (Rai, Dhanpat) 156
Perillo, Lucia 224, 225–229, 235, 237–238 Prendergast, Catherine 337
Perry, Bliss 146 Preston, Jeffrey 287
Perry, Grayson 328 Price, Margaret 22, 39, 354
Perseverance, The (Antrobus) 225, 233–237 Price, Scott 307
Peter Pan 91 Pride and Prejudice (Austen) 110
Peter the Wild Boy 101–102 Priest, Cherie 83, 88–90, 92
Peters, Cynthia 49 primogeniture 110–114, 116, 117
Peters, Torrey 35–38, 38–39, 40 “Prisoner on the Hell Planet” (Spiegelman) 354,
Petry, Anne 138 357, 359, 359
Pettitt-Wade, Ben 306, 308, 309 prostitution 323–324
Phelps Ward, E.S.  47 proverbs 343
Philips, Sally 304–305 PRU (Psychosis Research Unit) 334
Philpott, Keith 276 psychiatric disability: and graphic memoirs
phonocentrism 43, 44, 46–47; phonocentric 353–364
norms and sign language disconstruction 48–49 psychiatric reform 138
Picasso Project 263 Psycho 82
Pied Piper of Hamlyn, The 167 psychoanalysis 115
Piepzna-Samarisinha, Leah Lakshmi 221–222 PTC (Playwrights Theatre Centre) 261
“Pierre and Camille” (Musset) 45–46 PTSD 19, 297, 298–299
Pillars of the House, The (Yonge) 127–128 Puar, Jasbir K. 58
Pincherle Moravia Rosselli, Amelia 203–204, Pulitzer Prize 292
206, 209 “Punks, Bulldaggers, and Welfare Queens”
Plath, Sylvia 204, 205, 206, 207 (Cohen) 322–323
391
392
Index
puppet theatre: Dreamland Theater: “The Ridout, Nicholas 311

Language of Time” 83, 84–86, 92; Meet Fred right not to work 323
(Hijinx Theatre) 304, 306–313 Right to Main, The (Puar) 58
Purcell-Gates, Laura  312 Rimbaud, Arthur 319
“Pygmalion: A Romance in Five Acts” (Shaw) 54 Rimbaud in New York 320
Rinehart, Mary Roberts 47, 48
Quad Squad 9 Robinson Crusoe (Defoe) 102
Quayson, Ato 156, 205, 309, 317 Rochester, Earl of (John Wilmot) 116
“queer art of failure” 174 Rodas, Julia Leigh 182
queer theory 72–73, 74, 318, 325 Rodgers, Richard 253
queerness, and disability 89; Castle of Otranto, The Rogue Agent 249
(Walpole) 4, 110–114, 116, 117 Rohrberger, Mary 144
Queneau, Raymond 331 romance reading, by women 89, 90
Quillet, Claude 115–116, 117 Room for Romeo Brass, A. (Meadows) 279
Quintilian 345–346 Roosevelt, Theodore  195
Rose, Joel 318
race 25, 354; and care 38; and functional idiocy Ross, George 267
104; and health inequalities 24; and intelligence Rosselli, Amelia 3, 203–209; writing and history
151; and intersectionality 291, 292, 293–294, 209–210
295, 296, 301, 346; and welfare systems 322 Rosselli, Carlo 203, 204, 205
Racio City Music Hall 253 Rosten, Leo 152
racism 24, 25, 116, 135 Ruffo, Armand Garnett 216–217, 219, 220
Radcliffe, Ann 117 Rushdie, Salman 156, 157–159, 165
Radley, Alan 335 Rushton, Edward 182
Radway, Janice 90 Rx (Lindsay) 362, 364
Raggatt, Matthew 225
Raheja, Michelle 10 Sagetrieb 242
Rain Man 279, 280, 368, 369 salmon 12
Rawls, John 369 Samuels, Ellen 75–76
Ray, Sarah Jaquette 15 Sanchez, Rebecca 2, 3, 48, 193–202
Re, Lucia 207, 209 Sandahl, Carrie 37, 109, 258, 291–292
Read, Alan 310 Sanders, James 257
Reagan, Ronald 321, 322 Santini, Joseph 53
Realwheels Theatre 2, 256–258 Savageau, Cheryl 14, 17
Reason I Jump, The (Higashida) 366, 368–369 savantism 368
Red Eagle, Philip 19 Saw, Evelyn 267
“refrigerator mother” theory 367–368 Sayers, Edna Edith 46
Rehabilitation Act 1973, US 31 scapegoating 280
relationality, deafness as 194 “Scars in disability culture poetry: Towards
relationship, deaf forms of 194 connection” (Kuppers) 212–213
“rememory” 286 Schaffer, Talia  122
representation, in musical theatre 272–273 Schalk, Sami 4, 21–30, 24, 58, 193, 354
Representing Autism: Culture, Narrative, Fascination Schertzinger,Victor  267
(Murray) 367, 374 schizophrenia: HOAX project (Thornton) 327,
resistance, visibility as 2 328, 334–337, 336, 338, 339, 339–340
resonant reading 40 Schmaltz, Eric 220
“Retablo with Multiple Sclerosis and Saints” Schor, Hilary 125
(Perillo) 226 Schuyler, George 22
Reynolds, Nedra 347 Schwartz, Stephen 269–271
rhetorical sovereignty 10 Schwarz, Clair 282
rhetorical touch 344, 351; see also touch, science fiction 21, 22, 82, 83; see also black
grammar of speculative fiction
rhythm 321, 323 SCOPE 276
rhythmanalysis 318–319, 321, 324, 325, 333 Scott, Sarah 109
Richard III 290 Scott, Sir Walter  47
Richardson, Samuel 116 Scraping the Surface (Albert) 254
Ricouer, Paul 280 Searing, Laura Redding 47
392
393
Index
Second International Congress on Education of Silberman, Steve 373

the Deaf, Milan, 1880 48, 196 silent films 48
Secret Garden 272 Silko, Leslie Marmon 10
Secret Life of Stories, The (Bérubé) 305 Silverstein, Michael 346
secular demonizing 100, 101, 102, 105 Simpson, Daniel 245, 246
Sedgwick, Eve 72–73, 117 Simpson, David 245
Seeing Voices  260 Simpson, Hyacinth M. 82
“Self-Portrait: Still Life. A Family Story” Simpson, Leanne Betasamosake 10, 13
(Leggott) 230 Singer, Dr Judy 370, 372; see also Women from
“Self-Portrait in Twenty-Three Rounds” Another Planet? Our Lives in the Universe
(Wojnarowicz) 318, 319, 320–321, 322, 323, 324 of Autism
Self Preservation:The Art of Riva Lehrer 175 Sinha, Indra 157, 163–164
self-publishing 37–38; see also Infect Your Friends and Sklar, Howard 3, 142–155
Loved Ones (Peters) Skloot, Floyd 245
self-reflexivity 307, 309, 310 Skydive 257
Senier, Siobhan 9–20 slavery 132
sensory material, in D/deaf poetry 247 Sleep (Rosselli) 205, 206, 208
Sequoyah 18 Small, David 353
Seraph on the Suwanee (Hurston) 133 “Small Stories from Two Decades” (Leggott) 230
settler colonialism 14–15 Smart Jews:The Construction of the Image of Jewish
sex: and intersectionality 344; and language 345 Superior Intelligence (Gilman) 151
Sex and Disability (McRuer and Mollow) 58 Smith, Andrea 10
sexism 24 Smith, Cheré M. 244
sexual dysfunction 116–117 Smith, Danez 233
sexual taboos 109 Smith, Maggie 244
sexuality 25, 350–351; and intersectionality 291, Smudge (Bulmer) 262–263
292, 301, 346; and Rosselli 205, 206–209; Snake Pit, The (Ward) 138
see also Close to the Knives: A Memoir of Snow, Judith 263
Disintegration (Wojnarowicz) Snow, Michael 332
Shaeffer, Katherine 57 Snyder, Sharon L. 32, 33–34, 47, 58, 71, 109, 134,
Shaftesbury, Lord (Anthony Ashley Cooper) 149, 150, 156, 162, 167, 205, 215, 265, 270, 271,
102–103 277, 282, 285, 287
Shain, Alan 254 Snyder, Susan 3
Shakespeare, Tom 48, 278, 285 social class: cultural narratives of 277; and
Shakespeare, William 98, 102, 285, 308 intersectionality 291, 292, 293, 296, 301, 346
Shaping the Fractured Self 249 social constructivist models of disability 327
Shapiro, Joseph P. 150 social justice 369
Shaw, George Bernard 54 social model of disability 71, 74, 75, 214, 229, 278,
Shawl, Nisi 23, 25, 27 303, 328
Shelly, Sola 370, 372; see also Women from Another Social Security Act 1935, US 321
Planet? Our Lives in the Universe of Autism social status: status idiocy 98, 99, 101
Shildrick, Margrit 74, 212, 303, 309, 350 Sofer, Andrew 313
shlemiel 144–145, 152 Soldatic, Karen 12–13
short stories 3 Something to Sing About 267
“Shrike Tree” (Perillo) 228–229, 235 “Sonnet 16” (Leggott) 231
shtetl 152 Sontag, Susan 136–137
Side Show 269 Soop, Everett 18
Siebers, Tobin 1, 4, 58, 212, 215, 327, 329 Sorapure, Madeleine 373–374
“Sign Me Alice” (Eastman) 54 Sorensen, Eli Park 160
Sign Writing  52 Sound/Off Festival  260
signed languages 43, 45, 46; banning of from Spanish American War, 1989  195
deaf education 196; and images 196–197; Special Exits (Farmer) 353
phonocentric norms and sign language specific learning difficulties 328
disconstruction 48–49; typographical features speculative fiction 21; see also black speculative
52; see also AISL (American Indian Sign fiction
Language); ASL (American Sign Language); Spiegelman, Art 354
Deaf and sign language literatures “split feather syndrome” 15
393
394
Index
Spring Awakening 253, 265, 290 Tenskwatawa 18

Squier, Susan 336 TERMS (The Extreme Randomness of Multiple
SSI (Supplemental Security Income) 322 Sclerosis) (Humm) 333
Stafford, Mark 336–337 Terry, Howard L. 47, 48
Stage Left Productions 259, 260 Teuton, Sean Kicummah 9, 18
stage musicals see American stage musicals Teves, Stephanie Nohelani 10, 12, 16
Stairs and Whispers 248, 249 texere (to weave) 330
Stallard, Sara 52 Texier, Catherine 318
Stanley, Sarah Garton 260–261 “text telephone for the deaf ” see “TTY talk”
Staring (Garland-Thomson)  78 textile art: Fabricback Novel (Stewart) 327, 328–330,
Stein, Gertrude 197 329, 340
Stein, Joseph 269–271 Theatre and Accessibility in a Digital World
Steinbeck, John 148 conference 262
Steinberg, Deborah 73 Theatre Passe Muraille 260
Step into the Circle (Paris) 11 Theatre Terrific 259, 260
Stephens, Simon 368 Things to Do in a Retirement Home Trailer Park
Steppenwolf 296–301 (Wright) 353
stereotypes 142, 150, 242, 244 Thinking in Pictures (Grandin) 366, 367
Sternberg, Meir 144 Thomas, Carol 224, 226
Stewart, Alison 327, 328–330, 329, 340 Thomas, Sheree, Renée 23
stigmaphilia: definition 72–73; in a minor key Thompson, Judith 258
70, 73–75 Thornton, Ravi 327, 328, 334–337, 336, 338, 339,
Stitches (Small) 353 339–340
Stoker, Bram 89 Thornton, Rob see Thornton, Ravi
Stoler, Ann Laura 116 Thunderbolt, Tristan  17
Stone, Deborah 322 Thurman, Wallace 132, 137
Stone, Sandy 32, 35, 39–40 Tilley, Heather 182–193
Stone the Crow (Bose) 216 Time to Put My Socks On (Shain) 254
strained metaphor 345, 346 Timm, Rose Lee 54
Stretch, Gary 279 Tiresias 34
Stroker, Ali 253, 254, 256, 261, 265, 290 To count the prisoners (Contare i prigionieri)
Strombeck, Andrew 320 (Rosselli) 208
“Strumpet Song” (Plath) 206 Tocqueville, Alexis de 195
Stryker, Susan 32, 36 Todd, Dennis 105
subscription publishing 186–187, 188 Todd, Zoe 14
suffering 71, 73, 74, 79–80, 213, 217 Tomlinson, Richard 280
“Sum of the Parts” (Nichols) 217–219 Toner, Patrick 219
Sun, Pearl 268 Tony awards 253, 290, 368
supercrip 58, 214 Toolan, Michael 144
Supplemental Security Income see SSI Toro, Guillermo del 84
Sutton-Spence, Rachel  198 touch, grammar of 343, 344–345, 350–351;
Swan, Madonna 15–16, 17, 18 Chen: Animacies 343, 348–350, 350–351; Clare:
Sweat (Nottage) 292–296, 301 Brilliant Imperfection: Exile and Pride 346–348,
Swift, Jonathan 3, 98, 104–106 350–351; Crosby: Body Undone, A 343, 345–346,
Symons, Arthur 183 350–351; sex, gender and disability 350–351
“syntactic fusion” 54 Tourette syndrome 98–99
“Towards a Rhizomatic Model of Disability:
t4t (trans for trans) 38–40 Poetry, Performance, and Touch”
Takeda, Sana 57–58, 59–62, 65, 68 (Kuppers) 212
“Talking Horse” (Malamud) 46 Towards Solomon’s Mountain (Baird) 241
Tangles: A Story about Alzheimer’s, My Mother, and toxins and toxicity, environmental 348–350
Me (Leavitt) 353 traditional ceremonies, role in healing PTSD 19
Tarragon Theatre 254–255, 256, 262 trans 31–36; as futurity 35; Infect Your Friends and
TASL (Tactile ASL) 201n4, 248 Loved Ones (Peters) 35–38, 38–39, 40; t4t (trans
Taylor, Sunaura 63, 323 for trans) 38–40
Tempest, The (Shakespeare) 102 trans literary criticism 39, 40
ten Kortenaar, Neil 158 Trans literature 3, 4
394
395
Index
trans studies: and care 38; and disability Vietnam War  320
studies 31–33 violence: and disability 162–163; see also police
transgender identity see Hir (Mac) violence
“transgender rage” 36 visibility, as resistance 2
Transgender Studies Reader, The (Stryker and visionary fiction 23
Whittle) 32 visual sovereignty 10
Transtromer, Tomas  214 “visual vernacular” storytelling see VV
“transvestites” 31 “Voyage of the Line” (Humm) 331, 332–334
trauma: historical 209–210; of Indigenous children vulnerability 304–305; as complicity 309–311;
removed from communities 15; and traditional of hate crime victims 276–277; as interruptive
ceremonies 19 value 306–309; as structural support 311–313
“Treatment of Bibi Haldar, The” (Lahiri) 161–162 VV (“visual vernacular”) storytelling 50
tribal nationhood 11–12
triple-threat performers 266–269 Waggoner, Jess 3, 132–141
Trollope, Anthony 126 Walpole, Horace 4, 110–114, 116, 117
Trying to Grow (Kanga) 164–165 Walters, Shannon 343–352
“TTY talk” (“text telephone for the deaf ”) 49, 54 War Variations (Variazione belliche) (Rosselli)
tuberculosis 15–16, 18, 134, 135–138 206–209
Turgenev, Ivan 46 Ward, Mary Jane 138
Tweed, Hannah 3, 366–377 Ware, Cyrus Marcus 260–261
“Two Guns in the Sky for Daniel Harris” Warne,Vanessa 181–192
(Antrobus) 235–236 Warner, Michael 72, 73
Two Worlds (Locust) 15 Warren, Adam Grant 256–257, 258, 261
Tyler, Imogen 276 Washuta, Elissa 16–17
“Tyranny of Neutral: Disability and Actor Wasserman, Jarry 256
Training” (Sandahl) 258 Wasson, Sara 4, 70–81
“waste populations” 278
Uchatius, Susanna 259 Waterfront Journals (Wojnarowicz) 320
Ukrainian Sign Language 45 Watson, Nick 48
Ultrasound (Pottle) 260 Ways of White Folk, The (Hughes) 132, 133,
UN (United Nations): International Year of 134–138
Disabled Persons, The (1981) 18 We count endless corpses (Contiamo infiniti
underclass 133 cadaveri) (Rosselli) 208
UNDRIP (UN Declaration on the Rights of We count endless dead! (Contiamo infiniti morti!)
Indigenous Peoples) 12 (Rosselli) 208
Union Carbide 163 Weird Tales 84
unreliable narrators 87 Weise, Jillian 244, 245
Uppity Blind Girl Poems, The (Wolfe) 245 Welfare Queen 322
US: financial assistance for disabled people welfare system 278; US 321–322; welfare check
321–322; language politics 195–196; removal 321, 322, 324
of Indigenous children from communities 15; Welty, Eudora 46, 194
welfare system 321–322; xenophobia 195 Wendell, Susan 74
“Useless Suffering” (Levinas) 213 Wente, Jesse 216, 217
Wertham, Fredric 138
Valli, Clayton 197–198, 200, 245 Whalen, Zach 353
Vanderhaege, Guy 214 “where of writing, the” 347–348
Vanishing Points (Leggott) 230, 231–232 “white disability studies” 132
variance, disability as 278–279 White, Edmund H. 181–191
Variance, Vagaries and Extreme Randomness of MS Whitehead, Anne 328
(Humm) 327, 328, 331–334, 332, 340 Whitehead, Colson 23
Variazione belliche (War Variations) (Rosselli) Whiting, Susan 276
206–209 Whittle, Stephen 32
vernacular speech, US 196 Wicked 272
veterans: disabled 299–300; Indigenous 10, 18–19 Wiener, Diane 353
Vick, Martin 312 Wilkerson, Abby 351
victimhood, rejection of 11 Willard, Tom  50
Victor, the Wild Boy of Aveyron 102 Williams, Anna 182
395
396
Index
Williams, Donna 373 Workman Arts 259, 260

Williams, Ian 354, 362 World Without Down’s Syndrome, A 304–305
Williams, Melanie 280 Wright, Aneurin 353
Williams, William Carlos  219 Wright, Pamela 54
Wills, David 271 Wright, Richard 133, 138, 139
Wings of the Dove, The (James) 129 Wrinkle in Time, A (L’Engle) 151
Wirth-Nesher, Hana  152 writer’s block 347, 350
WisCon 82 writing, and history 209
Wittgenstein, Ludwig 330 Writing Deafness (Krentz) 193
Wizard of Oz, The 91 Writing and Madness (Literature/Philosophy/
Woeful Afflictions: Disability and Sentimentality in Psychoanalysis) (Felman) 206
Victorian America (Klages) 182 Wrong Planet 366, 367, 368, 373–375
Wojnarowicz, David 317–318, 319–325 Wycherley, William 97, 100–101, 117
Wolfe, Kathy 245
Wolfe, Patrick 15 xenophobia: US 195
Woloch, Alex 121 X-Men series  25–26
women: and care 38; in Creeps 256; functional
idiocy 98, 103–104; madwoman figures Yates, Samuel 265–275
in comics 357, 358, 359, 359–360; Yearwood, Mary Margaret Britton 372
romance reading 89, 90; see also feminine/ “Yellow Wall-Paper, The” (Gilman)  176
femininity; gender Yonge, Charlotte M. 123, 127–128
Women from Another Planet? Our Lives in the Yorke, Stephanie 3, 156–166
Universe of Autism 370–372, 374, 375 Yoshida, K.A. 368, 369
Woodruff, Paul 273 You Don’t Have to Say You Love Me (Alexie) 11–12
Woods, Angela 328, 340 Younger Brothers (Friatelli minori) (Pincherle
Woodward, James 201n1 Moravia Rosselli) 204
Woolf,Virginia 34, 204
Woolly Mammoth 296–301 Ziggy’s Wish 334, 337
Wordsworth, William 182–183 Zoeglossia 248
work: right not to work 323 Zubal-Ruggiere, Rachael 353
396

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i

THE ROUTLEDGE COMPANION TO

ROUTLEDGE COMPANIONS TO LITERATURE

Also available in this series:

The Routledge Companion to the Environmental Humanities

The Routledge Companion to International Children’s Literature

The Routledge Companion to Picturebooks

The Routledge Companion to World Literature and World History

The Routledge Companion to Pakistani Anglophone Writing

The Routledge Companion to Literature and Economics

The Routledge Companion to Twenty-​First Century Literary Fiction

The Routledge Companion to Transnational American Studies

The Routledge Companion to Victorian Literature

The Routledge Companion to Health Humanities

The Routledge Companion to Crime Fiction

The Routledge Companion to Literature and Trauma

For more information on this series, please visit:

Introduction to The Routledge Companion to Literature and Disability 1

1 Disability in Indigenous literature 9

2 Disability in black speculative fiction 21

3 t4t: toward a crip ethics of trans literary criticism 31

4 Challenging phonocentrism: writing signs and bilingual Deaf literatures 43

5 “Here there be monsters”: mapping novel representations of the

6 Spectrality, strangeness, and stigmaphilia: Gothic and critical

7 Contemporary horror and disability: adaptations and active readers 82

8 From “changelings” to “libtards”: intellectual disability in the eighteenth

9 Crip gothic: affiliations of disability and queerness in Horace Walpole’s

10 “Of wonderful use to everyone”: disability and the marriage plot in the

11 Afro-​modernism and black disability studies 132

12 “What’s the matter with him?”: intellectual disability, Jewishness, and

13 Metaphorical medicine: disability in Anglophone Indian fiction 156

14 Disability and contemporary literature: antinormative narratives

15 Poet and beggar: Edmund White’s Blindness 181

16 Deafness and modernism 193

17 The “fury of loving joyfully”: Amelia Rosselli’s War Variations 203

18 Getting there: pain poetics and Canadian literature 212

19 Disability in contemporary poetry 224

20 Disability poetry: testing the waters of definition 241

21 Canadian disability dramaturgies 253

22 Disability and the American stage musical 265

23 Of scapeghosts and men: Shane Meadows’ Dead Man’s Shoes and the

24 Disability, drama, and the problem of intersectional invisibility 290

25 Puppets, players and the poetics of vulnerability: Hijinx’s Meet Fred and

26 Sex, death, and the welfare check: rhythms of disability and sexuality in

27 Disability narrative, embodied aesthetics and cross-​media arts 327

28 A grammar of touch: interdependencies of person, place, thing 343

29 Psychographics: graphic memoirs and psychiatric disability 353

30 Challenging the neurotypical: autism, contemporary literature, and

27.5 HOAX Our Right to Hope. Writer: Ravi Thornton © 2017. Co-​writer:

Cameron Awkward-​Rich is Assistant Professor in Women, Gender, Sexuality Studies at

D. Christopher Gabbard is Professor of English at the University of North Florida, where

Matt Hargrave is Senior Lecturer in Drama at Northumbria University, Newcastle Upon

Kristen Harmon is Professor of English at Gallaudet University, a bilingual ASL-​English uni-

Kirsty Johnston, Associate Professor in the University of British Columbia Department of

David T. Mitchell is Professor of English at George Washington University, where he teaches

Stephanie Yorke reads and writes. She lives in Montreal.

Crip poetry carries in it the potential for…[a]‌radical transformation…[it has] the

What is inaccessible to most readers offers me access to the world of words, to my

The Routledge Companion to Twenty-First Century Literary Fiction

The Routledge Companion to Literature and Trauma

11 Afro-modernism and black disability studies 132

27 Disability narrative, embodied aesthetics and cross-media arts 327

27.5 HOAX Our Right to Hope. Writer: Ravi Thornton © 2017. Co-writer:

Cameron Awkward-Rich is Assistant Professor in Women, Gender, Sexuality Studies at

Kristen Harmon is Professor of English at Gallaudet University, a bilingual ASL-English uni-

Critical intersections and entanglements: the structure of the book

New directions in the field

I have been to the reservation tent revivals to get my hearing back

From the grave of my Chief who named me Broken Ears

———. The New Moon’s Arms. 1st ed. New York: Warner Books, 2007.

Vanderhooft, JoSelle, ed. Shattering Ableist Narratives. Seattle: Aqueduct Press, 2013.

Infect Your Friends and Loved Ones

For more at the intersection of disability/transgender, see also:

Vexing the print page

Me-accused kidnapping? What-for-for?…

Stigmaphilia in a minor key: uses of the Gothic

Vampires, live burial, and flesh-made cloth

Science Fiction/ fantasy/

New entrances into the asylum: Victor LaValle’s The Devil in Silver (2012)

Horror hackery: Cherie Priest’s Maplecroft (2014)

Erasure pleasures: Matthea Harvey and Amy Jean Porter’s Of Lamb (2011)

Status idiocy and functional idiocy

Functional idiocy: gender and race

How are we fall’n, fall’n by mistaken rules?