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LGBTQ+ People with
Chronic Illness
Chroniqueers in Southern Europe
Mara Pieri
LGBTQ+ People with Chronic Illness
Mara Pieri
© The Editor(s) (if applicable) and The Author(s), under exclusive licence to Springer
Nature Switzerland AG 2023
This work is subject to copyright. All rights are solely and exclusively licensed by the
Publisher, whether the whole or part of the material is concerned, specifically the rights of
translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on
microfilms or in any other physical way, and transmission or information storage and retrieval,
electronic adaptation, computer software, or by similar or dissimilar methodology now
known or hereafter developed.
The use of general descriptive names, registered names, trademarks, service marks, etc. in this
publication does not imply, even in the absence of a specific statement, that such names are
exempt from the relevant protective laws and regulations and therefore free for general use.
The publisher, the authors, and the editors are safe to assume that the advice and information
in this book are believed to be true and accurate at the date of publication. Neither the
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the material contained herein or for any errors or omissions that may have been made. The
publisher remains neutral with regard to jurisdictional claims in published maps and
institutional affiliations.
This Palgrave Macmillan imprint is published by the registered company Springer Nature
Switzerland AG.
The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland
To all the chroniqueers out there.
Acknowledgements
I was often told that writing is a solitary endeavour, made of multiple mis-
takes, hovering doubts, and ephemerous satisfactions. However, while
working on this book, I have never felt alone: it is now both intimidating
and relieving to have the opportunity to acknowledge the extended sup-
port I received.
I am deeply grateful to the Centre for Social Studies, University of
Coimbra (CES-UC), the institution I am honoured to be part of. During
the PhD programme in “Human Rights in Contemporary Societies” I
began this research and I found a productive and engaging environment.
I am particularly grateful to my supervisors, Bruno Sena Martins and Elia
AG Arfini: their wisdom and their critical minds pushed me and encour-
aged me every step of the way to do my best. Thank you to the colleagues
at CES-UC who stimulated important dialogues, in particular to Ana
Lúcia Santos, Ana Cristina Santos, Boaventura de Sousa Santos, Cecília
MacDowell Santos, Daniel Neves, Fernanda Belizário, João Arriscado
Nunes, Pablo Pérez Navarro, Rita Alcaire, Susana Noronha, Tiago Pires
Marques, and the wonderful colleagues of the GPS-CES (Sexuality
Research Group). Thank you also to the administrative staff, especially the
GAGEP and the PhD office, for their impeccable support. Through these
years, I learned very much from the work of brilliant colleagues: thank
you, Eduarda Ferreira, Isabel Crowhurst, Miguel Vale de Almeida,
Sebastian Mohr, and Zowie Davy, for providing guidance and inspiration.
During the visiting periods at the Universidad Complutense de Madrid
and the University of Turin, I had the opportunity to learn with Ignácio
vii
viii ACKNOWLEDGEMENTS
1 Introduction 1
1 Hic Sunt Dracones? 1
2 Time, Care, (In)visibility 4
3 Chapters Outline 6
References 10
2 A
Queer-Crip Perspective on Chronic Illness 13
1 Introduction 13
2 Chronic Illness: Biographical Disruption or Normal Chaos of
Life 14
2.1 The Prismatic Nature of Chronic Illness 14
2.2 Chronic Illness and LGBTQ+ People 18
3 Against Normalcy: Crip Theory, Disability, and Illness 22
3.1 The Emergence of Crip Theory 22
3.2 Cripping Chronic Illness 26
4 Queer-Crip Temporalities: A Proposal 29
4.1 Chrononormativity: The Obligation to (Re)produce,
Be Happy, and Get Well 29
4.2 Too Much of the Wrong Thing at the Wrong Time:
Queering Kronos 33
4.3 Can We Queer and Crip Time? 34
References 37
ix
x Contents
3 LGBTQ+
Rights and Access to Healthcare in Italy and
Portugal 43
1 Introduction 43
2 Southern Europe: God, Family, and Austerity 44
2.1 Catholic Culture 44
2.2 Familism 45
3 Economic Precariousness 46
4 LGBTQ+ Rights Between Tensions and Surprise 47
4.1 The Politics of Indifference: Italy 47
4.2 The Avalanche of Legal Changes: Portugal 48
4.3 Healthcare and Welfare 49
5 Methodology and Challenges of the Research 50
5.1 Doing Queer-Crip Research: The Tools 50
5.2 The Sample and the Fieldwork 53
5.3 The Inside Job 54
5.4 The Wounded Researcher 55
References 56
4 Intimacy
and Sexuality: Weaving Significant Relationships 59
1 Introduction 59
2 The Closer Ones: Negotiating Identities with Families and
Friends 60
2.1 Inherited Families: The Struggles as LGBTQ+ and Ill 60
2.2 Alternating Closets: Friendships 64
2.3 Friendship: A Matter of Time and Place 66
3 Spaces of Intimacy 68
3.1 (In)visibility in the Time of Dating 68
3.2 Desire, Communication, and Sexual Practices: When
Illness Comes to Bed 72
3.3 Bodies That Change, Relationships That Change 74
4 Able-Bodied and Reproductive? The Pressures to Normalcy 77
4.1 Being Ill Together 77
4.2 The Procreative Imperative 78
4.3 Imaginaries of LGBTQ+ Parenting 80
5 Conclusions 82
References 83
Contents xi
5 Negotiating
Care Between Silences, (In)visibility, and
Disobedience 85
1 Introduction 85
2 Negotiating Relationships of Care 86
2.1 Care as a Duty 86
2.2 Care as a Form of Control 90
2.3 Care as a Choice 92
2.4 Care as a Gift 94
3 The Unseen Faces of Care 96
3.1 Not Only Care Recipients: Narratives of Care Providers 96
3.2 Mental Health 97
3.3 Learning Self-care100
4 Healthcare Contexts and Medical Power102
4.1 Being an LGBTQ+ Patient102
4.2 Sexism, Fatphobia, and Discrimination in the
Doctor’’s Room104
4.3 Disobedient Patients: Grappling with Medical Power106
5 Conclusions106
References108
6 Precarious
Lives. Navigating Through Work, Public
Spaces, and Activism109
1 Introduction109
2 Precariousness at Work and Because of Work110
2.1 (In)visibility at Work110
2.2 A Necessary Destiny: Precariousness113
2.3 Don’t Leave to Live: Family Ties and Cohabitation116
3 Inhabiting the Public Space119
3.1 Accessibility in Space and Time119
3.2 The (In)visibility Dilemma in the Public Space121
3.3 Only for Spectators: Performing for the Social Gaze122
4 The Politicisation of Pain in Activism125
4.1 The Epistemology of Ignorance in LGBTQ+ Spaces125
4.2 The Bionic Bodies of LGBTQ+ Activists128
4.3 An Ensemble of Atoms: Activism on Illness131
5 Conclusions133
References134
xii Contents
7 The
Emergence of the Chroniqueers137
1 Introduction137
2 Blurring Boundaries of Time, Care, and (In)visibility138
2.1 Queering and Cripping Time138
2.2 Reimagining Care139
2.3 Reconsidering (In)visibility142
3 Back to This Scene: The Future and the Chroniqueers144
3.1 The Unmapped144
3.2 Hic Sunt Chroniqueers146
References150
Index151
About the Author
xiii
CHAPTER 1
Introduction
What have LGBTQ+ issues to do with chronic illness? Are they related and
relatable in any way? I heard this question countless times while research-
ing these topics. It is always disconcerting to understand how something
that constitutes the core of our interest is insignificant or even inexistent
for others. While recruiting participants for the study, I received this e-mail
from a prospective interviewee: “I am queer and I have a cardiac illness.
But I feel like the former is a choice, the second a mere fate. They are not
related and I cannot see how they could be. However, if that is what you
are looking for, I am available for an interview”.
The puzzlement in this message and the adamant separation between
choice and fate made me understand that the challenge in this research
would be to make space for multiple possibilities.
To explain what I was doing I would often think about the images of
ancient maps. In the cartographic attempts made in Western countries in
medieval times, cartographers would populate all unknown territories
with monsters, dragons, and bizarre animals. They would identify such
creatures with the expression hic sunt dracones, here be dragons, or hic
sunt leones, here be lions. The uncharted territory was at the same time
known and unknown: its existence was known, but its contours had not
yet been explored (by them).
This book is an exploration of uncharted territory: it aims to analyse the
narratives of young LGBTQ+ adults with chronic illnesses living in Italy
and Portugal. LGBTQ+ stands for Lesbian, Gay, Bisexual, Transexual,
Queer and every other sexual orientation, gender identification, gender
expression, and relational orientation which fall outside the cisgender and
heterosexual alignment. My interest in the topic sparked through different
diluted moments. As a chronically ill person, I often noticed how chronic
illness per se challenges the ideas of able-bodiedness and vulnerability.
During these years, I came to know several people who self-identified as
LGBTQ+ and had a chronic illness: we would often end up sharing views
that identified connections and unseen links between two experiences of
(in)visibility and struggle. I became eager to find a reflection of these hints
in academic literature: when I realised there was not so much about the
topic, I felt compelled to investigate it. Emma Willard, feminist and geog-
rapher, stated: “This is not so much a subject which I choose, as one which
chooses me. It comes unbidden to my mind, and like an intrusive guest,
there it will abide, and irresistibly claim my attention” (in Popova, 2018,p.
143). It is probably not by chance that Willard was also a professional
mapmaker that attempted to design maps in which time and space would
conflate. In her words I see how the subject of my work progressively
chose me, claiming my attention and stimulating my interest.
The book is based on qualitative research of 24 narrative interviews
conducted in Portugal and Italy between 2016 and 2019. Participants are
between 24 and 40 years old. They all self-identify within the LGBTQ+
spectrum and have one or more chronic illnesses. Moreover, it benefits
from contributions from activists and experts encountered during
fieldwork.
The objectives of the research are mainly three. In the first place, it aims
to explore to what extent the experience of chronic illness and self-
identification as LGBTQ+ interplay in everyday lives. Referring to the
theoretical framework of crip studies (McRuer, 2006; Kafer, 2013) and
queer studies (Ahmed, 2006; Halberstam, 2011), I am interested in the
ways heteronormativity and able-bodiedness (re)produce norms that
affect the ways bodies are perceived.
1 INTRODUCTION 3
In the second place, the research points out the language of human
rights to decode how multiple oppressions lead the way to unexpected
forms of resistance in everyday practices. Despite stark differences in the
frameworks of rights, in Italy and Portugal LGBTQ+ people still suffer
from discrimination, institutional homophobia, and harassment. Similarly,
for those with a chronic illness, access to healthcare, regular jobs, and
autonomous lives are often impeded by loose ends in the legislative under-
standing of chronic illness. This book addresses the experiences of inter-
viewees concerning their access to rights. However, it also aims at
understanding to what extent discrimination, exclusion, and violence give
rise to practices of resistance and different grammars of human rights
(Santos et al., 2019). The research corroborates whether the conjunction
of chronic illness and sexual and gender diversity, in the context of
Southern Europe, provides experiences for the formation of anti-normative
(re)productive subjects.
Finally, the research aims at understanding which practices of time,
care, and visibility are put in place to deal with the pressures of heteronor-
mativity and able-bodiedness. Taking the theory of intersectionality as a
reference (Crenshaw, 1991), I interrogate what other multiple belongings
are at play, such as class, gender, cultural capital, and education. Moreover,
through the analysis of personal narratives, it analyses how interviewees
make sense of their identity and to what extent practices of resistance cor-
respond to political claims in this sense.
The research contributes to a double knowledge gap: in queer studies,
where studies on intersections between LGBTQ+ lives and chronic illness
are scarce (if we exclude studies on HIV amongst gay men); and in the
sociology of health and illness, where sexuality in general and, more spe-
cifically, the voices of LGBTQ+ communities rarely emerge. To a broad
extent, I often refer to critical and feminist disability studies about able-
bodiedness, accessibility, and critiques of bodily normalcy.
Before moving to the outline of the book, I want to dedicate some
words to the language used and its emotional nuances. I grew up in Italy,
moved to Portugal for my PhD, and still live here. While conducting most
of my academic life in English, I learned Portuguese: at the beginning of
the fieldwork, I had reached a level of fluency that provided me with the
necessary basis to listen to the stories of participants. I often feel that
English is the language of the brain; Portuguese is the language of the
body; and Italian the language of the heart: juggling between them is a
constant exercise. So, whilst listening to the narratives in their original
4 M. PIERI
care are significant for those who live as LGBTQ+ with a chronic illness.
How is support provided, what are the significant persons who have an
active role in it? What are the challenges and the obstacles? Which unex-
pected alliances emerge and which are confirmed in their centrality? What
is the role of families of origin and partners in these configurations?
The third line of inquiry is visibility, as inherently associated with invis-
ibility. Chronic illnesses mostly cause invisible symptoms and imply strate-
gies of management of visibility, as well as choices on passing as able-bodied
according to the context (Samuels, 2003; Wong, 2020). Similarly,
LGBTQ+ people commonly enact strategies of coming out and (in)visibil-
ity. Whilst visibility is often used in campaigns of awareness to promote the
importance of being out and proud, invisibility represents a viable strategy
to protect LGBTQ+ people in unsafe contexts. Both visibility and invisi-
bility are thus discussed as performative and contextual strategies deter-
mined by a vast array of cultural, social, and emotional factors. How are
these strategies managed? How does chronic illness contribute to the (in)
visibility of sexual and gender diversity? How does being LGBTQ+ change
the strategies of (in)visibility as chronically ill? To what extent is (in)visibil-
ity perceived as a political act? What is the role of social and physical pain
in the sense of safety and in the choices of coming out?
Time, care, and (in)visibility constitute red tape throughout the book.
They are so inextricably bound that they cannot be considered separate
elements of analysis: they represent a recursive frame of interpretation.
The questions posed are many and I will not answer them all: although I
believe it is important to find explanations for what we observe, I also
value the importance of producing new questions. In this, I follow Kafer:
“questions keep me focused on the inconclusiveness of my conclusion, on
the desire to think otherwise” (2013, p. 18).