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 THE ROUTLEDGE INTERNATIONAL
HANDBOOK OF CHILDREN’S
RIGHTS AND DISABILITY

This handbook provides authoritative and cutting-edge analyses of various aspects of

the rights and lives of disabled children around the world.
Taking the UN Convention on the Rights of Persons with Disabilities (CRPD)
and the UN Convention of the Rights of the Child (CRC) as conceptual frameworks,
this work appraises the current state of affairs concerning the rights of disabled
children across different stages of childhood, different life domains, and different
socio-cultural contexts.
The book is divided into four sections:

• Legislation and Policy

• Children’s Voice
• The Life Course in Childhood
• Life Domains in Childhood

Comprised of 37 newly commissioned chapters featuring analyses of UN documents

and case studies from Australia, Brazil, Ethiopia, Hong Kong, Italy, the Netherlands,
Norway, Papua New Guinea, Serbia, South Africa, Spain, Sweden, the United King-
dom, the United States, and Vanuatu, its multidisciplinary approach reflects the com-
plexities of the lives of disabled children and the multifarious nature of the strategies
needed to ensure their rights are upheld.
It will be of interest to researchers and students working in disability studies,
education, allied health, law, philosophy, play studies, social policy, and the sociology
of childhood. It will also be a valuable resource for professionals/practitioners,
allowing them to consider future directions for ensuring that disabled children’s rights
are realised and their well-being and dignity are assured.
Angharad E. Beckett is Professor of Political Sociology and Social Inclusion and
Director of Research and Innovation at the School of Sociology and Social Policy,
University of Leeds. She is a member of the interdisciplinary Centre for Disability
Studies at the University, where she was for many years a joint Director. Her research
interests include disability theory and politics, the resistance practices of the disabled
people’s movement, inclusive education, and play/leisure for disabled children and
young people. She teaches Disability Studies at undergraduate and postgraduate level
and has supervised many doctoral students in this field. She founded and is Co-Chair
of the Editorial Executive for the open-access International Journal of Disability and
Social Justice.

Anne-Marie Callus is Associate Professor in the Department of Disability Studies,

Faculty for Social Wellbeing, University of Malta. She lectures, researches, and has
published on disability rights, empowerment of persons with intellectual disability,
inclusive education and disabled children’s rights, as well as cultural representations of
persons with disability. She is Deputy Editor of Disability & Society.
ROUTLEDGE INTERNATIONAL HANDBOOKS

THE ROUTLEDGE INTERNATIONAL HANDBOOK OF NEW CRITICAL

RACE AND WHITENESS STUDIES
Edited by: Rikke Andreassen, Catrin Lundström, Suvi Keskinen, Shirley Anne Tate

ROUTLEDGE HANDBOOK OF ASIAN PARLIAMENTS

Edited by: Po Jen Yap and Rehan Abeyratne

THE ROUTLEDGE INTERNATIONAL HANDBOOK OF CHILDREN’S

RIGHTS AND DISABILITY
Edited by: Angharad E. Beckett and Anne-Marie Callus

ROUTLEDGE HANDBOOK OF MACROECONOMIC METHODOLOGY

Edited by: Jesper Jespersen, Victoria Chick and Bert Tieben
 THE ROUTLEDGE
INTERNATIONAL
HANDBOOK OF
CHILDREN’S RIGHTS
AND DISABILITY

Edited by Angharad E. Beckett

and Anne-Marie Callus
 Cover image: Portraits, Ash Loydon
First published 2023
by Routledge
4 Park Square, Milton Park, Abingdon, Oxon OX14 4RN
and by Routledge
605 Third Avenue, New York, NY 10158
Routledge is an imprint of the Taylor & Francis Group, an informa business
© 2023 selection and editorial matter, Angharad E. Beckett and Anne-
Marie Callus; individual chapters, the contributors
The right of Angharad E. Beckett and Anne-Marie Callus to be identified
as the authors 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.
With the exception of Chapter 9 and Chapter 12, 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.
Chapter 9 and Chapter 12 of this book are available for free in PDF format
as Open Access from the individual product page at www.routledge.com.
They have been made available under a Creative Commons Attribution-
Non Commercial-No Derivatives 4.0 license.
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: Beckett, Angharad E., 1976– editor. | Callus, Anne-Marie, editor.
Title: The Routledge international handbook of children’s rights and
disability / edited by Angharad E. Beckett and Anne-Marie Callus.
Description: Milton Park, Abingdon, Oxon ; New York, NY : Routledge,
2023. | Includes bibliographical references and index.
Identifiers: LCCN 2022049041 (print) | LCCN 2022049042 (ebook) |
ISBN 9780367521530 (hardback) | ISBN 9780367521554 (paperback) |
ISBN 9781003056737 (ebook)
Subjects: LCSH: Children with disabilities—Legal status, laws, etc. |
Children with disabilities—Social conditions. | Children’s rights.
Classification: LCC HV888 .R69 2023 (print) | LCC HV888 (ebook) |
DDC 362.4083—dc23/eng/20221031
LC record available at https://lccn.loc.gov/2022049041
LC ebook record available at https://lccn.loc.gov/2022049042

ISBN: 978-0-367-52153-0 (hbk)

ISBN: 978-0-367-52155-4 (pbk)
ISBN: 978-1-003-05673-7 (ebk)
DOI: 10.4324/9781003056737

Typeset in Bembo
by Apex CoVantage, LLC
 CONTENTS

List of Figures xiii

List of Illustrations xv
List of Tables xvi
List of Contributors xvii
Acknowledgementsxxix
Prefacexxx

1 Introduction: Children’s Rights and Disability 1

Anne-Marie Callus and Angharad E. Beckett

SECTION 1
Legislation and Policy 15

2 The Human Rights Model for Children with Disabilities 17

Jonas Ruškus

Vignette One 37
Meet Aurora

3 For the Full Incorporation of the Rights of Children, with

or without Disabilities, Into the Human Rights Model 39
Ignacio Campoy Cervera

vii
 Contents

4 An Analysis of the UNCRPD Concluding Observations on

the Rights of Children with Disabilities 56
Bronagh Byrne

5 ‘They still need to listen more’: Working in Partnership

with Disabled Young Researchers to Inform and Shape
Country Submissions to the UN Committee on the Rights
of Persons with Disabilities and UN Committee on the
Rights of the Child 73
Anita Franklin and Zara Todd

6 Human Rights through the Eyes of Children with Disabilities 92

Elena Jenkin, Erin Wilson, Robert Campain, Kevin Murfitt, and
Matthew Clarke

Vignette Two 111

Meet Charlie

7 Developing the Right(s) Approach for Autism 113

Nick Hodge, Patty Douglas, and Bronagh Byrne

8 Poverty, Deprivation, and Disabled Children’s Right

to Citizenship 129
Edgar Galea-Curmi

9 The Care Dependency Grant in South Africa: Challenges

on the Road to Inclusive Rights 147
Zara Trafford

SECTION 2
Children’s Voice 165

10 Children’s Rights, Arts-Based Methods, and Gramsci’s

Common Sense: The Possibilities of Freedom 167
Francesca Bernardi

11 Beyond the Spoken Word—Facilitating the Disabled Child’s

Voice through the Mosaic Approach 188
Elvira Psaila

viii
 Contents

Vignette Three 207

Meet Liv

12 Disabled Children’s Participation in Healthcare

Decision-Making209
Radoš Keravica

13 Participation of Disabled Children in Health Guidelines

Development227
Kevin De Sabbata and Elena Syurina

14 The Right to an ‘Active Voice’ without Words:

Co-Creating Knowledge in Special Schools with Art
Research Together 244
Karian Schuitema

Vignette Four 263

Meet Liam

15 The Rights of the Child when Symbolic Language is out

of Reach 265
Kristin Vindhol Evensen

16 Do all Children have the Right to Express Views?: Listening

to ‘Differently Voiced’ Communicators 281
Lauran Doak

SECTION 3
The Life Course in Childhood 301

17 Babies with Disabilities and their Entitlement to Imagined

Hopeful Futures 303
Belinda Johnson

18 Is Disability a Justification to undermine the Right to Life? 320

Begoña Rodríguez Díaz

Vignette Five 339

Meet Ane

ix
 Contents

19 Down Syndrome Abortion Bans: Law and Ethics 341

Ryan H. Nelson and Jamie M. Crist

20 Clash of Competing Rights in Surrogacy: Embryos,

Foetuses, and Children with a Disability 357
JosAnn Cutajar

21 Framing Does Matter: How Health Professionals can

Empower Disabled Children and their Families 374
Claire Reinhardt and Amy Robasse

22 From ‘Retarded’ Education to Authentic Life: A Personal

Education Retrospective 391
Tammy Bachrach and Timothy Woods

Vignette Six 409

Meet Michaela

23 Design as an Agent of Children’s Rights?: Inclusive Mobility

Design for Children with Disabilities 411
Cara Shaw and Farnaz Nickpour

24 Assistive Technologies as Rights Enablers 432

Pedro Encarnação and Albert M. Cook

25 ‘Look at us . . . We’re Walking’: Parental Advocacy vs a

Child’s Privacy in the age of Internet Sharing 450
Stephanie Patterson and Kathleen McGoldrick

26 An Open Exploration around End-of-Life Journeys for

Children Facing Terminal Illness/Severe Disability 465
Caroline Ellison, Clara Chapman Van Duivenbode, Fiona
Buchanan, and Nicole Moulding

SECTION 4
Life Domains in Childhood 481

27 The Changing Landscape of Inclusive Education: A Shift

towards Universal Design for Learning 483
Frederic Fovet

x
 Contents

Vignette Seven 501

Meet Ġinġa

28 ‘Lawfare’ and the Role of Civil Society on Promoting the

Inclusive Education Public Policy in Brazil 503
Rodrigo Hübner Mendes and Luiza Andrade Corrêa

29 A Certain Kind of Freedom, a Certain Subject of Right:

The Disability dispositif of Inclusion and the Government of
the Disabled Child in the Italian Education System 520
Francesca Peruzzo

30 Social Justice and Language Rights for Deaf Children 537

Tom Humphries, Gaurav Mathur, Donna Jo Napoli, and
Christian Rathmann

31 Through the Eyes of Children with Disabilities: Recognising

Children’s Agency in their Play in Inclusive Playspaces 555
Jenene Burke and Lisa Stafford

32 Disabled Children’s Access to Music: Music’s

Transformational Potential and Music Therapy’s Dis/
enabling Role in Making Music Accessible 577
Maren Metell

Vignette Eight 597

Meet Euletta

33 The Right to Grow Together: Exploring the Roles

of Community Agents in Providing Support for Early
Adolescents with Disabilities to make Friends and join Groups 599
Gemma Diaz-Garolera, Maria Pallisera Díaz, and Judit Fullana Noell

34 Sex, Love, and Human Rights: Sexual Rights for Children

and Youth Experiencing Disability 616
Michelle Janzen

35 Who is Worthy of Rights?: An Analysis of Children Living

at the Intersections of Disability, Citizenship, and Migration
in the United States and Italy 632
Valentina Migliarini and Chelsea Stinson

xi
 Contents

36 The Right to Safety: Promoting the Authority of Disabled

Children to Tackle Rights Resistance 648
Sally Robinson and Jan Idle

37 Ceci n’est pas un dénouement: This is not a Conclusion 666

Angharad E. Beckett and Anne-Marie Callus

Index680

xii
 FIGURES

5.1 Matrix of attitudes to participation by disabled children and

young people. 77
10.1 ‘Angus Young swinging his jacket.’ Charcoal and oil pastels. 176
10.2 ‘My cousin Frida.’ Chalk and tempera. 177
10.3 Salt dough, monologue, and movement. 179
10.4 ‘Now I paint Mario.’ Toy and acrylic paint. 180
10.5 ‘They’re looking.’ Composition and photograph by Luke. 180
10.6 ‘Finishing touches.’ Paper, acrylic paint, and movement. 181
11.1 Themes emerging from role-plays. 195
11.2 Themes emerging from observation sessions. 195
12.1 Image of ladder with eight rungs. 211
12.2 Graphic with four text boxes placed horizontally from left to
right, with an arrow placed between them pointing to the right. 212
14.1 Bernardo’s puppet. 245
14.2 Still of ‘our story’ showing Lilly animating. 251
14.3 Lilly has drawn a pig on her feedback form, which was her
favourite part of the film. 251
14.4 Nathan’s personal page for the sensory story was created with
help from the teaching staff and his classmate. 252
14.5 Bernardo’s drawing made after seeing the film. 255
14.6 Bernardo has painted a picture of a tree in the park for his
personal page of the sensory story. It is one of the places he really likes. 258
23.1 A conceptual model of design thinking. 413
23.2 The four orders of design and relevant design disciplines. 414
23.3 The relationship between design and disabled children’s rights. 415
23.4 Reflection-for-transition framework of designerly ways. 416
23.5 Imbalance of designerly contributions to the field of IPM design. 423

xiii
 Figures

23.6 Example of a ‘dream wheelchair’ designed by a young

wheelchair user. 424
23.7 Transitioning designerly ways to optimise design as an agent of
children’s rights. 426
23.8 IPM designers’ collective focus on each of the five designerly
ways in the context of IPM design as an agent of children’s rights. 427
24.1 Examples of adaptations to children’s wheelchairs. 437
28.1 Student enrolment of students with disabilities, global
developmental disorders, and high skills/giftedness. 510
31.1 Selected inclusive playscapes. 561
31.2 Research equipment. 564
31.3 Zach’s shadow showing him redirecting various parts of play. 566
31.4 Jorjah’s shadow showing her directing others as part of her play. 567
31.5 Rhiannon twiddling the band. 568
31.6 Mason taking time out, enjoying his own space away from his carer. 568
31.7 Rhianna observing other children playing. 569
31.8 Phoebe taking turns on the flying fox. 570
31.9 Haiden taking turns on the see-saw. 570
31.10 Going down the slide. 571
32.1 Ava being the maestro in the song ‘Vi er alle elleville’. 581
32.2 The pig in ‘The wheels on the bus’. 588
32.3 The accessibility of the parachute. 589
36.1 Young people’s interpersonal safety model. 654
36.2 My safe places. 656
36.3 Young people’s safety strategies. 659
37.1 ‘Academic Activism’ by Aaron Adatto Sandel. 676

xiv
 ILLUSTRATIONS

1 Aurora 36
2 Charlie 110
3 Liv 206
4 Liam 262
5 Ane 338
6 Michaela 408
7 Ġinġa 500
8 Euletta 596

xv
 TABLES

6.1 Frequency of response by child respondents 98

9.1 The number of children in receipt of the CDG according to age group 155
15.1 Results of Review of Relevant Studies 268
24.1 ISO 9999:2016 classification of assistive products 434
24.2 Children’ rights and assistive technologies that may be needed to
be able to enjoy those rights 440
28.1 Student enrolment of students with disabilities, global
developmental disorders, and high skills/giftedness 2008–2020 511

xvi
 CONTRIBUTORS

Tammy Bachrach is Associate Professor of Special Education at Azusa Pacific

University (APU) in Southern California, USA. Prior to assuming her position at
APU, Tammy was a general and special educator for 18 years, working with both
primary and secondary students with disabilities. Tammy grew up in the disability
community as the daughter and sister of individuals with intellectual disabilities.

Francesca Bernardi is Founding Chair of the Antonio Gramsci Society UK and

Fellow of the Royal Society of Arts (RSA). Francesca is Visiting Lecturer in Child-
hood Studies at Leeds Beckett University and Arts Therapies at the University of
Roehampton. She trained in art and design education and has worked in schools,
alternative provision, and further education. She most consistently engages in multi-
disciplinary research, setting up creative environments for critical participatory work
with marginal communities. Francesca is a translator (QUB; Routledge), advocate,
artist, and creative coach. Francesca is a member of the Disability without Abuse
Project USA.

Fiona Buchanan is Senior Lecturer and Researcher at the University of South

Australia, with extensive experience as Social Worker in community health and non-
government agencies in the UK and in Australia. Working from an empowerment
perspective, Fiona has experience that includes counselling, group work, commu-
nity development, and agency management. Research expertise includes child well-
being, mothering, the effects of domestic violence on women and children, young
people, and the effects of sexual abuse. Currently, she is a senior research fellow/
senior lecturer, leading funded research into ‘what helps people who grow up with
domestic violence create healthy relationships as young adults’ and participating as
a chief investigator in research into ‘emotional abuse of children’. These research
activities all contribute to understanding the rights of children at the end of life as
well as across the lifespan.

xvii
 Contributors

Jenene Burke, PhD, is Professor and Director, Academic Operations in the Insti-
tute of Education, Arts, and Community at Federation University Australia. A for-
mer teacher, Jenene has over 20 years’ experience in teacher education. Jenene’s
learning and teaching interests centre on educational responses to student diversity,
with respect to inclusive education and disability studies in education. Jenene is best
known for her world-class research into playspaces as inclusive environments for chil-
dren and their families, which she embarked on in 2003 in her doctoral study. She
was an invited member of the (Australian) National Inclusive Playground Advisory
Group in 2012.

Bronagh Byrne is Senior Lecturer in Social Policy, Co-Director of the Centre for
Children’s Rights, and Co-Founder of the Disability Research Network at Queen’s
University Belfast (QUB), Northern Ireland. She is also Programme Director of the
Master’s in Children’s Rights at QUB. Her research expertise focuses on the imple-
mentation of disability rights law and children’s rights law across national policy and
practice, on the right to inclusive education, and on the use of rights-based research
methodologies. Bronagh is an editorial board member of the International Journal of
Disability and Social Justice.

Robert Campain is Research Fellow in the Centre for Social Impact, Swinburne
University. The focus of his research has been on social inclusion for people with dis-
ability, involving participatory research methods. He is currently working on projects
for the community service provider Uniting Vic Tas, with an emphasis on outcomes
for recipients of community services.

Ignacio Campoy Cervera is Advisory Member of the Royal Board on Disability,

Senior Lecturer with tenure at the University Carlos III of Madrid, and Member of
the Institute of Human Rights ‘Gregorio Peces-Barba’ of the University Carlos III
of Madrid. His research interests focus on children’s rights, the rights of persons with
disabilities, inclusive education, equality and non-discrimination, the concept and
grounds of human rights, and the philosophy of law.

Matthew Clarke is Pro-Vice Chancellor Research Development and Alfred Deakin

Professor at Deakin University and has worked in the development sector for more
than two decades, originally working for a large international non-governmental
organisation before moving into the tertiary sector. His research has focused on the
professional practice of NGOs as well as aid effectiveness, religion and development,
and humanitarian action. Much of Matthew’s work focuses on the Pacific.

Albert M. Cook is Professor Emeritus of Speech Pathology and Audiology in the

Faculty of Rehabilitation Medicine at the University of Alberta. He served as Dean
of the Faculty of Rehabilitation Medicine from 1994 to 2007. Dr Cook has worked
with interdisciplinary teams to develop assistive devices and to assess the effectiveness
of technology being used by persons with disabilities. Dr Cook co-authored with

xviii
 Contributors

Janice Polgar and Pedro Encarnação Assistive Technologies: Principles and Practice 5th
ed., 2020. He has co-edited four other textbooks and written numerous chapters in
rehabilitation and biomedical engineering texts, monographs, peer-reviewed papers,
and conference proceedings.

Luiza Andrade Corrêa has a PhD (2020) and Master (2015) in State Law from
the University of São Paulo and graduated (2009) in Law from the Pontifical Catho-
lic University of São Paulo, and is currently studying specialisation in Instructional
Design (Senac). She is the advocacy coordinator at the Rodrigo Mendes Institute
since June 2020. Her research areas are judiciary, teaching and research in law, anti-
discrimination law, education, and disability studies.

Jamie M. Crist is Clinical Ethicist at Advocate Aurora Health System based in Chi-
cago, Illinois, USA. Much of her work involves conducting ethics consultations at
the bedside, developing best practices for consultations, hospital policy development,
and ethics committee support. Her research focuses on the intersection of bioethics
and health law. She earned a JD (summa cum laude) and an Master of Arts in Bioeth-
ics from Case Western Reserve University in 2018 and completed a post-doctoral
fellowship at Baylor College of Medicine in 2020. She is also a certified healthcare
ethics consultant.

JosAnn Cutajar is Associate Professor in the Gender and Sexualities Department at

the University of Malta. She has worked as a consultant with various Maltese govern-
ment entities, adopting an intersectional approach. From 2017 to 2020, she acted as
the coordinator for the Consultative Council for Women’s Rights within the Min-
istry for Justice, Equality, and Governance. She conducted research on gender and
disability for the EU Fundamental Rights Agency between 2005 and 2013.

Kevin De Sabbata is Lecturer at Keele University Law School (UK). His work
focuses on human rights, legal capacity, healthcare decision-making for people with
dementia and disabled people, and global health ethics. He has held academic posi-
tions at the Vrije Universiteit Amsterdam (NL), the University of Udine (Italy), and
Bristol University (UK). He holds a Master in Law from the University of Trieste
(Italy) and a PhD in Law from the University of Leeds (UK). Before transferring to
academia, he has worked in legal practice, focusing on the legal protection of vulner-
able individuals, civil liability, and inheritance law.

Gemma Diaz-Garolera received her PhD in Education in 2019 from the Univer-
sity of Girona (Spain). Her research is focused on the social inclusion of people with
intellectual disabilities, their community participation, skills and supports related to
friendship, and personal support networks, among others. She teaches at the Bach-
elor’s Degree in Social Education and at the Master’s Degree in Inclusive Education
Addressing Diversity, especially focusing her teaching on aspects related to social
inclusion, inclusive education, universal support measures, and participation. More

xix
 Contributors

details about her research work can be found on https://recercadiversitat.wixsite.

com/diversitat/publicaciones.

Begoña Rodríguez Díaz PhD is Lecturer at Universidad Francisco de Vitoria

(Madrid). She has 20 years of teaching experience in International Law and Euro-
pean Union Law both at the undergraduate and postgraduate levels. One of her
major lines of research is the role of civil society in the adoption and monitoring of
international treaties. Having a child with Down syndrome has led her to focus her
research on the rights of people with disabilities, a field where she aims to specialise
and contribute.

Lauran Doak is Senior Lecturer in Special and Inclusive Education at Nottingham

Trent University. Her research interests include autism, learning disability, commu-
nication, agency, literacy, and augmentative and alternative communication (AAC).
She is also committed to revaluing and celebrating the role played by families in the
education of children with learning disabilities. Recent publications have examined
family use of story-making apps with children with learning disabilities, parental
perspectives on the meaning of ‘literacy’ in special education, and family (dis)engage-
ment with AAC. Lauran tweets as @LauranDoak.

Patty Douglas is Assistant Professor in the Department of Educational Psychology

and Student Services at Brandon University in Brandon, Canada. She is a former
special education teacher in Toronto, Canada. She researches and teaches in disability
studies, critical autism studies, and critical approaches to mothering and care through
arts-informed, critical, interpretive, post-structuralist, and post-humanist approaches.
Douglas works with teachers, families, and disabled individuals to challenge stereo-
types and reimagine systems beyond exclusion and deficit perceptions. More infor-
mation can be found at www.restoryingautism.com @Restorying.

Pedro Encarnação is Senior Affiliate Professor of the CATÓLICA-LISBON—

Universidade Católica Portuguesa, Portugal. He is President-Elect of AAATE (Asso-
ciation for the Advancement of Assistive Technology in Europe, 2022–2023); Visiting
Professor at the Universidad del Rosario, Colombia; and Senior Visiting Researcher
at the University of Leeds, UK (2022–2025). With a background in electrical engi-
neering, he has current research interests that include robotic assistive technologies to
support children with disabilities. Pedro has joined Albert M. Cook and Jan Polgar
for the 5th edition of Assistive Technologies: Principles and Practice, co-edited Guidelines
for supporting children with disabilities’ play and Robotic Assistive Technologies: Principles
and Practice, and published 60+ articles in peer-reviewed journals and conference
proceedings.

Caroline Ellison has extensive multidisciplinary professional practice across disabil-

ity and human services in Australia and SE Asia, as Crossing the Horizon Professor
of Ageing and Disability, Developmental Educator, and End-of-Life Doula at the

xx
 Contributors

University of South Australia. Caroline has a focus on engaging with people liv-
ing with disability, including children as collaborators to create increased inclusion,
choice, and control at all stages of life. With a strong interest in systemic, societal,
and individual issues across sectors such as disability-inclusive development, end-of-
life choice and planning, arts, sports, and leisure (how we use our free time), access
to spiritual activities, positive behaviour support, protective behaviours and sexual
health, family leadership, and social role valorisation.

Kristin Vindhol Evensen is a kindergarten teacher and a special needs educator.

She has specialised in adapted physical activity and holds a PhD that describes the
embodied learning of lower– and upper–secondary school students with severe mul-
tiple disabilities. Evensen works as an associate professor at the Norwegian school of
sport sciences, where she concentrates on how embodiment affects impairment and
disability, gender, sexual orientation, and social class.

Frederic Fovet is an Inclusion and UDL scholar at Thompson Rivers Univer-

sity. His practice and research have focused originally on the creation of inclusive
provisions for learners with social, emotional, and behavioural difficulties. He has
previously held, in turn, the positions of Head of Accessibility Services at McGill
University, Assistant Professor in the Faculty of Education at the University of Prince
Edward Island, and Associate Professor in the School of Education and Technology
at Royal Roads University. He acts as a consultant, domestically and internationally,
both in the K–12 and post-secondary sectors, in relation to the integration of UDL
and to the management of change in inclusive pedagogy.

Anita Franklin, Professor of Childhood Studies, University of Portsmouth has over

25 years of experience undertaking policy- and practice-focused research with, and
alongside, disabled children and young people. Her work predominantly examines
issues of agency, rights, protection, inequality, and inclusion. Anita’s research on
disabled child abuse and disabled young adults who have experienced sexual and
domestic violence has sought to ensure that survivors’ voices are central. Alongside
Zara Todd, Anita has developed methodologies to empower disabled young people
to become research leaders undertaking all aspects of the research cycle and utilising
research evidence to lobby for change.

Judit Fullana Noell is Associate Professor at the Department of Pedagogy in the

University of Girona. She teaches at the Bachelor’s Degree in Social Education and in
the Master’s Degree in Inclusive Education Addressing Diversity. She has developed
research on the social inclusion of people with intellectual disabilities, issues related
to supported employment, the transition to adult life, independent living, and social
relationships and personal support networks. She has also contributed to the devel-
opment of inclusive research investigations. From all this work, publications have
emerged that can be consulted at https://recercadiversitat.wixsite.com/diversitat/
publicaciones, as well as more details of her work.

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 Contributors

Edgar Galea-Curmi is Assistant Lecturer in Social Policy and Social Work at the
University of Malta. His main lecturing and research interests include poverty and
living standards, supported living, long-term care, housing affordability, working
with service users and communities in the co-production of policies and services,
and programme evaluation. He was engaged extensively in the Maltese Public Ser-
vice on major social reforms and the development of social services. A social worker
by profession, Edgar has worked in the disability, mental health, domestic violence,
and correctional services sectors and contributed to the development of social work
as a recognised statutory profession in Malta.

Nick Hodge is Emeritus Professor of Inclusive Practice in the Sheffield Institute

of Education, Sheffield Hallam University, UK. Prior to joining Sheffield Hallam,
Nick was a special education teacher, supporting disabled children and their families
in schools for over 15 years. Nick’s research interests focus on the attitudinal and
structural barriers that lead to disabled children and their parents and carers becoming
marginalised, disempowered, and excluded within the educational system. Much of
Nick’s research has involved challenging deficit-led models of disability that mark out
children and young people as disordered and other.

Tom Humphries is Professor Emeritus in the Department of Education Studies and

the Department of Communication at the University of California, San Diego. He is
the co-author with Carol Padden of Deaf in America: Voices from a Culture (1988) and
Inside Deaf Culture (2005) and of numerous papers, including ‘Schooling in ASL’ in
the Berkeley Review of Education. More recently, he has published collaborative works
on the harms of language deprivation and the right to language. He was awarded the
2011 Henry Trueba Award for research on the social context of education by the
American Educational Research Association.

Jan Idle is a postdoctoral research fellow working at Flinders University and the
University of Technology Sydney. She focuses her social policy research on listen-
ing to and activating the voices of often-overlooked groups, including children and
young people.

Michelle Janzen is a PhD candidate within the Child and Youth Studies Department at
Brock University in Ontario, Canada. Her focus is on disability and human rights, par-
ent advocacy, and policy and practice. Her current research examines the ways in which
disabled individuals were represented and impacted through Covid-19 political and social
policy. Her interest was examining how failure to consider the needs and human rights
of disabled populations within crisis management policies impacted the mental health of
disabled children and their families during the first two years of the pandemic.

Elena Jenkin is Disability and Inclusion Researcher and Consultant who has
worked alongside children and adults with disabilities, deaf communities, their

xxii
 Contributors

families, and communities in the Pacific, Asia, and the Middle East. Elena has a
focus on inclusive methods, human rights, research, policy, and teaching, with
her recent work conducted in Iraq, Bangladesh, and Australia. Elena consults
for government, non-government organisations, and multi-lateral organisations.
She previously lectured in the Disability and Inclusion programme at Deakin
University.

Belinda Johnson is an applied sociology academic and a social researcher in the Centre
for Social and Global Studies at RMIT University, Melbourne, Australia. Belinda is an
early-career researcher, and she identifies as a lived expertise, parent-advocate researcher
as mother of a 9-year-old girl who has Down syndrome. Her research interests include
disability and carers and intersections of social justice issues and creative practices. She
has published in Disability & Society and the Journal of Sociology.

Radoš Keravica is a disabled researcher and a doctoral candidate at the University

of Leeds, Centre for Disability Studies. He works as an EU Marie Sklodowska-Curie
early-stage researcher within the Disability Advocacy Research in Europe (DARE)
project. He holds a Master’s Degree in Human Rights Law from the Central Euro-
pean University and a Master’s Degree in International Economics from the Univer-
sity of Novi Sad. His research concerns disabled children’s participation in healthcare
decision-making. He serves as a board member of the European Network on Inde-
pendent Living (ENIL) and worked previously for the UN OHCHR in Serbia as
Disability Rights Specialist.

Gaurav Mathur is Associate Professor in the Department of Linguistics at Gallaudet

University. His research areas centre on language structure, with a particular focus on
phonology and morphology (agreement, numeral incorporation, and classifier con-
structions). His research areas also include language perception and the role of lan-
guage modality (visual-manual vs. auditory-vocal) in language structure. His studies
have drawn on cross-sign language comparisons with regard to morphology and on
experimental approaches to sign language phonology. Currently, he is collaborating
with his research team and other colleagues to advocate for the importance of early
sign language exposure for deaf children.

Kathleen McGoldrick is a clinical associate professor at Stony Brook University,

where she teaches in the Disability Studies and Human Development concentration,
in addition to courses in scholarly writing and research methods. She has been PI
on a study that looked to identify healthcare professionals’ perspective of disability,
titled ‘Shifting Perspectives: Enhancing Healthcare Professional’s Awareness Through
a Disability Studies Undergraduate Curriculum’. She is also the co-author on an
article on the intersections of disability studies and health science. In addition, she has
co-authored a book, Research Methods in the Health Sciences. Kathleen holds an MLS
from St. John’s University in NY.

xxiii
 Contributors

Rodrigo Hübner Mendes is Founder and CEO of the Rodrigo Mendes Institute,
a non-profit organisation whose mission is to guarantee that every child with dis-
ability has access to quality education. The institute develops research and teacher
training programs in several countries, aiming to transform the public education
systems into environments that respect and value human diversity. Rodrigo Hübner
Mendes is Young Global Leader (World Economic Forum) and Fellow of Ashoka.
Over the last years, he has been working as a consultant for UNESCO and for the
government of Angola.

Maren Metell (she/her) is a PhD student at Nordoff Robbins/Goldsmiths, Uni-

versity of London; works as a music therapist in a public school; and teaches in the
music therapy program at the Grieg Academy, University of Bergen, Norway. In her
PhD, she explores, together with families with disabled children, how, when, and for
whom musicking becomes accessible.

Valentina Migliarini is Assistant Professor in Education Studies at the University of

Birmingham. Her work, both in research and teaching, focuses on increasing access
to equitable education for students from multiply marginalised communities, specifi-
cally disabled students from migrant and forced migrant backgrounds, in secondary
education. She is at the forefront of researchers using the Disability Critical Race
Theory in Education (DisCrit) framework as an intersectional lens to examine inclu-
sive policies and practices in education systems in Europe and in the United States.

Nicole Moulding is Professor, Researcher, and Educator at the University of South

Australia, with special interests in gendered violence, mental health, and social work,
with over 40 journal articles in research into gendered violence, mental health, and
social work. Nicole is Director of the Safe Relationships and Communities Research
Group (SRC), an interdisciplinary research group from diverse disciplines across
UniSA and industry partners. Her research projects include an Australian Research
Council–funded nationwide study into the long-term impact of childhood emo-
tional abuse, and a national study into domestic violence on women’s citizenship,
with a focus on mental health, housing, employment, and social participation. As
an academic and social worker, Nicole has an interest in children and the rights of
children across the lifespan, including at end of life.

Kevin Murfitt is Senior Lecturer in Disability and Inclusion in the School of Health
and Social Development at Deakin University and a researcher whose work has
encompassed workforce diversity and human rights. He is a passionate advocate for
access to all areas of community life for people with disability.

Donna Jo Napoli is Professor of Linguistics and Social Justice and Maurice Eldridge
Faculty Fellow at Swarthmore College. Her present research areas are the structure
of sign languages, the effects of modality on linguistic structure, creativity in lan-
guage (poetry, humour, and taboo), and cognitive principles in common among

xxiv
 Contributors

human activities (language, dance, yoga, comic strips). She is part of the RISE pro-
ject, producing bimodal-bilingual video-books for deaf children, distributed free on
the internet. It is her greatest privilege and joy to participate in this team, advocating
for deaf children’s language/human rights.

Ryan H. Nelson is Assistant Professor in the Center for Medical Ethics and Health
Policy at Baylor College of Medicine and Clinical Ethicist at Houston Methodist
Hospital in Houston, Texas, USA. He earned his PhD in philosophy at the Univer-
sity of Utah in 2019 and completed a post-doctoral fellowship at Baylor College of
Medicine in 2021. His research addresses ethical issues related to disability, psychiatry,
and end-of-life care.

Farnaz Nickpour is Reader in Inclusive Design and Human-Centred Innovation

at the University of Liverpool and leads the Inclusionaries Lab for Human-Centred
Innovation. Her work explores critical and contemporary dimensions of design for
inclusion across healthcare and mobility sectors.

Maria Pallisera Díaz received her PhD in Education in 1994 from the University
of Girona, where she is a full professor at the Department of Pedagogy, former coor-
dinator of the Bachelor’s Degree in Social Education, and the present coordinator
of the PhD Programme in Education. Her current research interests are focused
on social inclusion of people with intellectual disabilities (independent living, com-
munity participation, and supporting social networks and relationships), as well as
inclusive research. In the past, she has worked on studies linked to work inclusion
(supported employment) and transition to adult life. See http://recercadiversitat.wix.
com/diversitat for more details about her group’s work.

Stephanie Patterson is Clinical Associate Professor at Stony Brook University. She

teaches in the Disability Studies and Human Development concentration. She has
authored a textbook, Disability and Employment in the United States, and co-edited two
special forums for the Review of Disability Studies. She has written a book chapter,
‘Working 9 to 5 . . . or Not: Historical Origins of Disability Discrimination in the
US Workplace’, for Disability Discrimination at the Workplace, and co-authored ‘Dis-
ability, Vulnerability, and the Capacity to Consent’, in Research Involving Participants
with Cognitive Disability and Difference: Ethics, Autonomy, Inclusion, and Innovation. Her
MLS is from Stony Brook University.

Francesca Peruzzo is Post-Doctoral Research Fellow at the University of Birming-

ham at the School of Education, researching inclusive technologies and digital acces-
sibilities during the Covid-19 pandemic. She completed her doctoral studies at the
UCL Institute of Education with a study that merged a sociological perspective and
Foucauldian tools to challenge ableism in Italian higher education and their impli-
cations for inclusive policies and practices and equity in opportunities in academic
contexts. Her current interests lie in disabled students’ activism in higher education;

xxv
 Contributors

accessible, decolonial, and inclusive education policy and practice; and policy priva-
tisation in education.

Elvira Psaila, a physiotherapist by profession, has worked in both inpatient and

outpatient settings. For over ten years, Elvira worked with disabled children and
their families as a physiotherapist at the Child Development and Assessment Unit
(CDAU). In 2020, she moved to Aġenzija Sapport, the national provider for services
for disabled persons, as a physiotherapist. Since then, she has taken on the role of Day
Services Manager within the same agency. In 2015, Elvira completed her Master of
Arts in Disability Studies and is currently reading for her doctoral degree, with her
research focusing on voice and active agency in young disabled children’s lives.

Christian Rathmann is Professor and Chair in Deaf Studies and Sign Language
Interpreting at Humboldt-Universität zu Berlin. He administers two programs: BA
in Deaf Studies, and MA in Sign Language Interpreting. Research areas include lin-
guistics (agreement, aspect, event structure and classifier constructions, corpus of sign
languages L1 and L2 acquisition and learning), sign language teaching (methodology
and assessment), and interpreting and translation. He is currently involved in several
projects: DESIGNS (focus on Deaf employment); PROSIGN (focus on sign lan-
guage learning, teaching, and assessment within the context of Common European
Framework of Reference for Languages), and EUTB (focus on disability-related peer
counselling).

Claire Reinhardt is a disability, special education, and medical advocate in San

Diego, California. She has presented on including children in the IEP process, disa-
bility stereotypes and microaggressions, and making sure help is wanted before doing
a task for someone. Her current project is personal research regarding promoting
disability pride for disabled youth.

Amy Robasse is Executive Director of the Iowa Statewide Independent Living

Council. She has her Master’s in Disability Studies and has been working and volun-
teering in disability-related positions since 2007. One of the most fun positions she
held was working with the United States Forest Service to increase their accessibility.

Sally Robinson is Professor of Disability and Community Inclusion at Flinders

University, South Australia. She does co-produced research with disabled children,
young people, and adults about what helps them feel safe, well, and happy at difficult
times in their lives. She also works with governments and organisations about how to
listen to the things that matter to disabled people.

Jonas Ruškus is Doctor in Education and Full Professor at the Department of Social
Work at Vytautas Magnus University in Lithuania. In 2014, he was elected by the
General Assembly of the United Nations as an expert-member of the Committee on
the Rights of Persons with Disabilities of the United Nations and was re-elected in

xxvi
 Contributors

2018, when the Committee appointed him as its vice-chair. Jonas Ruškus is a mem-
ber of councils and executive boards of civil society organisations, such as Lithuanian
Human Rights Centre, Kaunas l’Arche Community, Association of Independent
Living, Lithuania, and Teach for All network partner in Lithuania.

Karian Schuitema is an interdisciplinary researcher and practitioner who specialises

in theatre for young audiences, cultural and educational inclusion, as well as collabo-
rative research with children and young people. She founded ‘Art Research Together
(ART!)’, which is a collaborative research initiative that invites children to co-create
knowledge using performance and community arts.

Cara Shaw is a PhD researcher with expertise in inclusive mobility design. Cara has
developed mobility products for a variety of user groups and contexts, from low-cost
all-terrain wheelchairs and evolvable walking aids to high-tech rehabilitation devices
and paediatric power chairs.

Lisa Stafford is an ARC DECRA senior research fellow in the School of Geog-
raphy, Planning and Spatial Sciences, UTAS, Australia. Lisa is a community plan-
ner and social scientist specialising in inclusive communities, disability justice, and
disabled children’s geographies. She has 20 years’ experience across professional
practice and academia. Her work seeks to bring about equity and justice in eve-
ryday spaces and infrastructure, including having led the Queensland All Abilities
playground project in 2007–2010, creating 17 inclusive playspaces with local gov-
ernments. Lisa is also a highly experienced participatory researcher and facilitator
in inclusive creative methods.

Chelsea Stinson is Assistant Professor of Inclusive Education at the State University

New York College at Cortland. Her research, teaching, and community-based work
focus on the experiences of emergent bilingual youth labelled as disabled and their
families at the crossroads of race, language, disability, and migratory status. She also
studies the knowledge, emotions, and policy contexts of teachers who support multi-
ply marginalised students. She aims to contribute to a critical, generative understand-
ing of equity and justice through inclusive education.

Elena Syurina is Assistant Professor at the Athena Institute, Vrije Universiteit,

Amsterdam. She has a multidisciplinary background in policy analysis and neuropsy-
chology. She holds a Master’s in Neuropsychology and a PhD in Child and Youth
Health Care from Maastricht University, the Netherlands. Her current work focuses
on participatory research involving children as well as research into improvement
of quality of life of disabled people (especially individuals with autism spectrum
disorders).

Zara Todd identifies as intersectional feminist and disabled person and has been
active in disability rights advocacy for over 20 years. Zara is passionate about inclusion

xxvii
 Contributors

and supporting marginalised groups to have a say in policymaking processes. She has
advised on disability at local, national, and international levels, including for the UK
government, the British Council, and the Council of Europe. Zara is particularly
interested in participatory research and led young disabled peoples’ participation in
the VIPER research project carried out by ALLFIE. Zara has completed a Winston
Churchill fellowship, where she explored disability leadership in Australia and New
Zealand.

Zara Trafford is a qualitative researcher from South Africa. She has an enduring and
evolving interest in health inequalities and inequities, especially in under-resourced
areas and among underserved populations. Zara has a background in social science
(oral history and medical anthropology) and worked in the non-profit sector and
public health research before moving into disability. Her doctoral research, at Stellen-
bosch University, adopts a variety of theoretical approaches and is focused on under-
standing multiple stakeholders’ perspectives on the South African care dependency
grant for disabled children. She hopes to contribute to the growth of interdisciplinary
and applied research in public health and disability, from the south.

Clara Chapman Van Duivenbode is Research Assistant at the University of South

Australia with an interest in the lives of children living with chronic conditions and
illness. Clara has studied law and other policy development as well as understanding
human rights issues.

Erin Wilson is Professor at the Centre for Social Impact, School of Business, Law
and Entrepreneurship, Swinburne University of Technology, and holds the uniting
chair in Community Services Innovation, Centre for Social Impact, Swinburne Uni-
versity. Erin has a special interest in the area of disability-inclusive practice and human
rights in both Australia and developing countries. Much of Erin’s work involves
research methods that enable the participation of people with disability as researchers,
respondents, and in advocating change based on research findings.

Timothy Woods is a self-advocate and an active member of his community. He is a

custodian for St Michael’s Orthodox Church, California, USA.

xxviii
 ACKNOWLEDGEMENTS

We would like to thank the young disabled people and chapter authors for their con-
tributions. It has been our joy to work with you all on this book project. We were
particularly delighted and encouraged by the way in which contributors inspired and
supported each other during the preparation of this handbook. We hope that one
of the legacies of this text will be the formation of an interdisciplinary international
community of practice in this area. There is need for such a community, given the
extent of the work still to be done to ensure human rights and social justice for disa-
bled children globally.
Thank you to Ash Loydon, Illustrator, for his cover artwork and portraits of the
young disabled people. It was important to us to commission an illustrator who is part
of the Disability Arts community. Ash identifies as an autistic father, artist, and illus-
trator. He is also the parent of autistic children. We thank him for the understanding,
sensitivity, and imagination with which he responded to this commission.
Thank you to Gerard Quinn for writing the Preface to this handbook. We are so
pleased that he feels this collection makes a valuable contribution.
Thank you to Claire Jarvis at Routledge for her recognition of the need for a
handbook of this type, on this topic, and for her guidance throughout. We are also
grateful to Sully Evans for his assistance and positivity in the final stages of preparing
the manuscript. Warm thanks to Burgandi Rakoska for her work on the index.
Finally, we want to recognise our families, friends, and each other. Much of the
work on this handbook took place during the Covid-19 pandemic. It was family and
friends that sustained us during this period. We thank them with all our hearts.
Angharad and Anne-Marie
September 2022

xxix
 PREFACE

It is an honour, indeed, to be asked to write a preface to this inspiring volume.

One of the interesting things about the UN Convention on the Rights of Persons
with Disabilities (UN CRPD) is the ripple effect it is having on many diverse and
longstanding fields. One of those fields concerns the rights of the child. Looking
back, it is interesting to see how conceptions of childhood have evolved. It is also
interesting to see how the domain of children’s rights has itself been changed and
enriched by the impact of the UN CRPD.
Two such impacts stand out and are admirably captured in this volume.
First of all, children are no longer seen as being merely the static beneficiaries of
protection, as they were in the past. To the protective impulse, new theories of moral
agency have been superadded, with a renewed focus on the latent dreams, goals, and
wishes of children themselves. The well-known innovations of the Convention with
respect to human autonomy and legal capacity help give fresh life to the idea of the
moral agency of all children, and these innovations also help nudge thinking on the
rights of the child forward.
Secondly, it seems strange to say this now, but it is true: in the past, children with
disabilities were not fully conceptualised as children, with equal dreams, hopes, and
desires of their own. Despite our collective commitment to help nurture and develop
children, this commitment was not applied evenly to all. The relative lack of inclu-
sion even in areas like play was telling. Indeed, the failure to ensure the right to play
for children with disabilities is especially revealing. It is through play that we imagine
the future, our place in the future, and develop our relationships with others that
help us navigate the future. By affording space for play, we give the next generation
the means to continually imagine and re-imagine their place in the world. By closing
down that space, we fail to see the person behind the human difference of disability.
Inclusion is, of course, complicated—involving a mix of protection, nurturing,
and empowering. The real added value of the UN CRPD in this regard is that it

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 Preface

underpins our collective commitment to inclusion in the round and not just in terms
of protection. Protective policies in the past helped build gilded cages for children
with disabilities.
The beauty of a volume like this is that it helps enrich the debate about inclusion
and how to achieve it, with the voices of children and young persons themselves
being central. I commend all involved, and I know that policymakers all over the
world will benefit from this work.
Gerard Quinn
UN Special Rapporteur on the Rights of Persons with Disabilities

xxxi
 1
INTRODUCTION
Children’s Rights and Disability

Anne-Marie Callus and Angharad E. Beckett

We begin this handbook by introducing its focus: disabled children’s rights. This
requires an analysis of the three key terms—children, disability, and rights—how
they have to come to mean what they mean today, and what they mean when they
are used together. This chapter traces the evolution of the concepts, providing the
historical context for the remainder of the book. The intersection between the three
concepts is discussed, drawing upon interdisciplinary approaches. This chapter con-
cludes with a summary of the four sections of the handbook and their respective
content, and some signposting to our final chapter.

Children
Ulanowicz (n.d.) refers to Payne’s The Childhood in Human Progress, published in 1916,
as being the first history of childhood to be published. But if a point of origin had to
be nominated for the vast amount of research about children that exists today, Philippe
Ariés’s Centuries of Childhood: A social history of family—published in 1962 (first published
in French as L’Enfant et La Vie Familliale Sous l’Ancien Regime in 1960)—would be a
likely candidate. This text is widely credited as foundational to childhood studies.
Ariés’s book has not been without its critics, not least his contentious statement
that ‘it seems more probable that there was no place for childhood in the medieval
world’ (Ariès 1962, p. 33). As Lesnik-Oberstein (1998, p. 9) wryly observes, ‘[r]
arely can so few words have brought forth so many in refutation’. However, what-
ever limitations it may have, this book has been highly influential in ‘developing
the application of theoretical questions to the idea of “childhood”, and initiated the
analysis of “childhood” as a socially, culturally, and historically contingent construc-
tion’ (Lesnik-Oberstein 1998, p. 8). Analysing childhood as a construction obviously
does not mean denying or even overlooking the material reality of being a child but
‘treat[ing] children benignly within a world of the practically real (that which passes

DOI: 10.4324/9781003056737-1  1
 Anne-Marie Callus and Angharad E. Beckett

for “real” in practice), while at the same time always being alert to the constructed
character of that reality’ (Stainton Rogers and Stainton Rogers 1998, pp. 183–184,
italics in the original).
It is significant that Ariés’s original French book title and the subtitle in the Eng-
lish version refer not only to children but also to families. The history of the develop-
ment of the concept of childhood is thus a history of studies about the relationships
of children with their parents and then with other adults. It is also a history of how
adults have looked at children, whether it is Ariés’s cultural history of childhood,
Darwin’s (1877) autobiographical portrait of his own son, Rousseau’s (1993) treatise
on the education of Émile, Langdon Down’s work with children who are nowadays
identified as having an intellectual or learning disability (Jarrett 2020), Montessori’s
(1967) work on educational methods, or Arendt’s (1958a) concept of natality and the
promise that every birth offers as a beginning and introduction of something new to
the world. This list can be extended, of course—child developmental theorists (such
as Piaget, Vygotsky, or Erikson); Peter Townsend and others’ influential, policy-
focused work at the Child Poverty Action Group; Jens Qvortrup’s (1994) important
articulation of children as human beings, not human becomings; James et al.’s (1998)
development of the ‘new’ sociology of childhood; and more recently, the coming to
the fore of Global South perspectives, including the community relational view of
the raising of children informed by Ubuntu philosophy. Whichever way childhood
is understood, it has been, and continues to be, primarily adults who discuss and
conceptualise its nature.
To make matters more complicated, the nature of childhood is somewhat para-
doxical. Childhood is the initial stages of life, which we quite literally grow out of as
we move into adulthood. It is therefore a time to prepare for adulthood. But it is also
a phase of life that is valuable in and of itself. Thus, it is both a means to an end and
an end in itself. Taylor (1998, p. 92) describes childhood as ‘[t]hat fleeting period of
life which all experience and all grow out of, yet which always leaves its traces within
and behind the adult’. However, while we never quite leave our childhood behind us
and while childhood experiences are foundational to our development, most of us do
become adults. After all, as William Wordsworth wrote in his 1802 poem ‘My Heart
Leaps Up’, ‘The Child is the Father of the Man’. Children, therefore, are human
beings in their own right, but also beings that are on the way to becoming adults.
Many children do present to adults their perspectives on childhood, while they
are still children. There are children who are activists in their own right, for exam-
ple, Malala Yousafzai, Nujeen Mustafa, and Greta Thunberg, to name just three
child activists of our time. Whether their focus is on education for girls, refugees,
or climate change, their arguments are underpinned by the problems that children
face because of the actions of today’s adults and their fears for the world they will
have to inhabit as adults. Furthermore, their work has been directed towards adult
legislators, policymakers, and service providers. As these child activists have grown
up and become adult, so is a new generation succeeding them. As Lansdown (2010,
p. 17) observes, whilst ‘the specific rights violations associated with childhood are
time-limited’, the constant process of cohorts ageing out of childhood means that

2
 Introduction

there is always a newly emerging cohort of younger children potentially facing new
challenges and needing to be heard.
One of the many challenges facing adults who want to understand children’s
experiences and perspectives is that our childhood experiences will inevitably be dif-
ferent from those of children today. Societies and cultures are constantly changing,
and in many places, technology is accelerating those changes. Therefore, insofar as
childhood is socially and culturally constructed, current experiences of childhood
are different from those of even the previous generation of children. Adults, then,
need to maintain a critical and enquiring stance towards their own assumptions and
practices in relation to children. Children’s views about their lives and about what
they expect of adults matters and their perspectives need to inform our work, directly.
And since no one child is alike, we need to be aware of diversity in their perspectives
and what they need from us.

Rights
Like the concept of the child and childhood, there is an extensive, rich history of
thinking about ‘rights’—economic, social, cultural, civil, and political among
others—their (relative) importance, function, and evolution. The idea of human rights,
which is the focus of this handbook, can be traced back to Ancient Greece (although
they only applied to free men, not women, children, or slaves). Much later, the Eng-
lish Magna Carta of 1215, the French Declaration of the Rights of Man and of the Citizen
of 1789, and the United States Bill of Rights, also of 1789, are widely considered to be
the most important statements on human rights. The concept of rights as belonging
inherently to each and every human being by virtue of their being human found its
fulfilment in the 1948 Universal Declaration of Human Rights, which, in the first line
of its preamble, states that ‘the inherent dignity and of the equal and inalienable rights
of all members of the human family is the foundation of freedom, justice and peace
in the world’. This Declaration, together with the International Covenant on Civil and
Political Rights and the International Covenant on Economic, Social, and Cultural Rights, is
among the foundations of the two United Nations conventions that are of direct rel-
evance to this handbook—the Convention on the Rights of the Child (1989) (CRC)
and the Convention on the Rights of Persons with Disabilities (2006) (CRPD).
The rights of children and of disabled persons, and by extension, also of disabled
children, are also safeguarded by other supranational pieces of legislation, such as
the European Convention on Human Rights, the African Charter on Human and Peoples’
Rights, and by national laws. The latter are important. However, there remains a fun-
damental problem with the realisation of human rights globally: some countries make
international law part of their domestic legal order; many more do not and consider
international and domestic law to be distinct. In such ‘dualist’ states, it is only when
the rights set forth in international law are enshrined in national laws that they are
justiciable and remedies can be sought. Arendt’s argument, that the upholding of
human rights depends ultimately on being a citizen of a state that recognises one’s
human rights, still holds true.

3
 Anne-Marie Callus and Angharad E. Beckett

Even when cases are taken to supranational courts, the decision can only be exe-
cuted by the government of the country of citizenship of the person seeking redress.
A clear case of this situation is that of Rusi Stanev, a Bulgarian man with a diagnosis
of schizophrenia who was placed under guardianship in 2002 and found himself
in an abusive situation in an institution. In 2011, the European Court of Human
Rights ruled that ‘Mr. Stanev had been deprived of his liberty under Article 5 of
the European Convention on Human Rights (ECHR)’ and that various other rights
established in the ECHR had been breached (cited in Lewis, n.d., p. 2). However,
Stanev could not win back his rights or receive his compensation, because he could
only do so through the Bulgarian courts, the same courts that had taken away his legal
capacity and therefore did not recognise him as a person before the law, a predica-
ment which Lewis describes as Kafkaesque.
Disabled children’s human rights, therefore, cannot be considered only in the
abstract formulation of international legislation but must also be considered in the
concrete reality of different social, cultural, and political contexts. Most chapters in
this handbook do just this: presenting and discussing the situation of disabled children
in specific national contexts.
An important characteristic of the UDHR is that it recognises childhood, along
with motherhood, as a time when individuals are ‘entitled to special care and assis-
tance’ (Article 25), an entitlement which is recalled in the preamble to the CRC. The
CRPD also makes reference to disabled children’s rights to, as far as possible, know
and be cared for by their parents (Article 18) and grow up in the community within
a family setting (Article 23) and their entitlement to all rights on an ‘equal basis with
other children’ (Article 7). The responsibility of adults to safeguard children’s rights is
also found in the League of Nations’ Geneva Declaration of the Rights of the Child (1924),
which, as Woodhead (2010) writes, was based on principles established by Eglantyne
Jebb (who also founded the Save the Children Fund). These placed responsibility on
adults, among others, to care for the child, ensure that their basic needs are cared for,
and that the needs of children in difficult situations are met.
At the same time that children are entitled to the care and assistance that is necessary
in childhood, they also have the right to enjoy their freedom. This right is an integral
part of the notion of human rights. The UDHR’s first statement is that ‘the equal and
inalienable rights’ of humans are ‘the foundation of freedom, justice and peace’. The
respect of rights, freedom, justice, and peace are thus inextricably bound together.
Freedom and its near synonym, liberty, are key concepts, because they signify a clear
departure from the idea that some people have an innate right to control the lives of
other people, as one finds, for example, in the feudal system, in absolute monarchies, or
in totalitarian states. As Geiringer and Rishworth (2017, p. 598) write:

Much if not all of modern human rights law can be deduced from these sim-
ple ideas: that we live under law; that law must protect liberty; and that liberty
includes not just physical freedom but the capacity to act and believe as one
wishes, to express one’s ideas, to associate and assemble with others, and to be
deprived of these rights only for good reason and by fair procedures.

4
 Introduction

What is important, therefore, is not just the ‘right to have rights’ (Arendt 1958b, p.
298); it is also vital to have the means and the liberty to exercise them. In this regard,
as Woodhead (2010) states, the CRC is seminal not only in providing comprehensive
protection of children’s rights but also in affirming for the first time, in Article 12,
children’s ability and right to form their own opinions and express them. This right
is reaffirmed, but also strengthened, in Article 7 (Children with Disabilities) of the
CRPD, which removes the requirement found in the CRC for the child to be capa-
ble of forming his or her own views and adds the requirement of providing ‘disability
and age-appropriate assistance to realize that right’. It is a right which is given great
importance in this handbook. In addition to a section dedicated to children’s voice,
many of the chapters in the other sections also emphasise the need to listen to disa-
bled children. What is meant by ‘listening’ is something we also consider in our final
chapter, wherein we challenge all those who are concerned with disabled children’s
rights, well-being, and flourishing to engage in a more ‘radical’ form of listening.
The handbook also includes contributions from disabled children. We believed
this was important—it would be strange, indeed, not to include their perspectives in
such a handbook. Eight young disabled people, from seven countries (Ireland, Malta,
Spain, Serbia, Taiwan, United Kingdom, USA), volunteered to introduce them-
selves, tell us about their likes and dislikes, and let us know how, if at all, they would
like the world to change. Their narratives are profoundly joyful, often poignant and
full of wisdom/insight. They reaffirm our belief that it is essential that any future
developments in disabled children’s rights or rights-based approaches are informed
by children’s perspectives.

Disability
The differences that we have come to understand as impairments have been part of
the human condition for at least as long as the human race has existed. Witness to that
is the evidence of impairments in human remains from thousands of years ago—for
example, in the skull of a child who had learning disabilities (Yong 2009) or the skel-
eton of a man who had paralysis (Gorman 2012). Responses to impairment and to
human beings who live/d with an impairment has, however, changed over the mil-
lennia. As Hughes (2020) among others shows us, the most profound shift in percep-
tions and thinking in this area occurred during the second half of the 20th century.
A key moment in the history of disability was when disabled people, pioneers
of the disability rights movement (or disabled people’s movement)—most notably
in the United States and United Kingdom—first developed a social interpretation
of disability. Impairment, they argued, can present challenges (‘impairment effects’
(Thomas (1999)), but what really disables people with impairments are the various
barriers that exist in the social environment, which prevent them from participat-
ing in society on an equal basis with others. Prior to the activism of these pioneers,
disability was widely perceived to be a personal problem, even ‘tragedy’, associated
with differences of mind or body (Oliver 1990). This model and its charitable vari-
ation did little to promote disability rights and much to perpetuate disabled people’s

5
 Anne-Marie Callus and Angharad E. Beckett

segregation and exclusion, even their elimination, in the case of eugenics-based poli-
cies and programmes.
The social interpretation of disability challenges traditional ways of thinking about
the ‘problem’ of disability—transforming it from a personal trouble into a public
issue. Medical intervention and rehabilitation can attenuate impairment effects. Wel-
fare benefits, such as disability allowances, are important for disabled people to be
able to cover the extra costs that often come with having an impairment and to sub-
stitute income that could have been gained were they in employment. The provision
of care also remains an important part of many disabled people’s lives, as shown by
Kittay (2019) and Rogers (2016). But what the disability rights movement has taught
us is that these responses, important as they are, are not enough, and sometimes they
can be problematic: rehabilitation can be problematic when it is about normalisation,
welfare provision can be problematic when it is paternalistic, and so on.
What the disability rights movement has taught us is that what is needed is a more
fundamental change within society. As the Union of the Physically Impaired Against
Segregation (UPIAS 1975, p. 3) put it:

[I]t is society which disables physically impaired people. Disability is some-

thing imposed on top of our impairments, by the way we are unnecessarily
isolated and excluded from full participation in society.

Ed Roberts’s fight to be admitted to the University of Berkeley in California as a stu-

dent and to be provided with the support he needed to pursue his studies (Zames and
Zames 2011) and Paul Hunt’s (1981) rejection of Miller and Gwynne’s explanation
for the plight of the disabled residents of the Le Court Cheshire Home are among
the many events that took place, especially in the 1960s and 1970s, that enabled the
emergence of what Mike Oliver (1990) would eventually call the social model of
disability.
Over time, as sometimes happens when ideas travel beyond their originators, the
social relational core to the social model was sometimes forgotten. Thomas (2004,
p. 24) described how ‘the social model soon came to be recognised and utilised in an
even more shortened form: disability is caused by social barriers not by impairments’.
She revisited the original thinking of those early pioneers and rediscovered the social
relational understanding of disability which emphasises barriers in the social envi-
ronment, whilst also taking into account the reality of impairment effects (Thomas
1999). Her intervention was, in our view, important.
Crucially, it is this understanding of disability that informs the CRPD. Whilst the
Convention contains no official definition, the preamble (UN 2006, Preamble para.
(e)) includes what is often understood to be a ‘non-definition-definition’ of disability
as resulting ‘from the interaction between persons with impairments and attitudinal
and environmental barriers’.
There are, of course, other models of disability. Indeed, there has been a prolifera-
tion of models: the affirmative model, the Nordic model, the human rights model,
the International Classification of Functioning, Disability, and Health (ICF) (Grue

6
 Introduction

2016; Lawson and Beckett 2021; Shildrick 2019). These models represent the broad
church of ideas found in disability studies regarding how best to interpret disability.
What they all have in common is that they do not equate (and thus also do not
conflate) disability and impairment and therefore do not place the onus squarely
on the shoulder of the disabled individual to conform to ableist norms or to try to
‘fit’ a world that has been built around mythical non-disabled humans. Rather, they
acknowledge the myriad factors—economic, social, cultural, political, technological,
and psychological—that disable people who have impairments, that produce disable-
ment. They also call for the removal of disabling barriers and opening up of possibili-
ties for creating more-inclusive societies. The differences between the models have
exercised academics (there is somewhat of an ‘industry’ devoted to debates about
models of disability). We suggest, however, that the differences between these models
are much less important than their similarities.

The Intersection of Childhood, Rights, and Disability

The history of the disabled people’s movement is, perhaps inevitably, dominated by
adults, whether they were born with a disability, were diagnosed with a disability in
their childhood or adolescence, or became disabled in their adult life. In fact, the
major battles fought by the pioneers of this movement focused on adult concerns,
for example, being able to live independently, being in employment, and pursuing
further and higher education. In Scandinavian countries, where developments con-
current to the events of the United States and the UK were led by parents, it was the
parents of disabled children and institutionalised disabled adults who first spoke up
about disability rights (Dywad and Bersani 1996; Mansell and Ericsson 1995).
When it comes to the study of the lives of disabled children, as Priestley (1998) has
shown, the focus for a long time was research on impairment and child development,
especially within the health sciences and education. One effect of this research, he
argued, is that disabled children have been positioned as vulnerable and as belong-
ing to a homogenous group. Priestley also notes the expansion of research within
both childhood studies and disability studies in the 1990s. As he observes, the two
approaches fit well with each other, focusing as they do on the social construction of
disability and of childhood and on the way various societal structures impinge on the
lives of disabled people and of children, and therefore also of disabled children. Since
then, research that is informed by disability studies and childhood studies perspec-
tives has become well-established, as evinced by Curran and Runswick-Cole’s (2013)
edited volume, Runswick-Cole et al. (2018) handbook, as well as this handbook
itself. We will return to the matter of ‘disabled children’s childhood studies’ in the
final chapter of this book, where we set forth our own articulation of this.
What is important to note here, however, is that the work that has been conducted
between disability studies and childhood studies reflects the ever-growing awareness
of the cultural and environmental factors that have a negative impact on the lives of
disabled children and how these factors uphold or detract from their rights. Work-
ing within these intersections has meant, and will continue to necessitate, bringing

7
 Anne-Marie Callus and Angharad E. Beckett

together various disciplinary approaches, including education studies, health stud-

ies, legal studies, philosophy, play studies, research methodologies, social policy, and
science and technology studies, among others. Such a multidisciplinary approach
reflects the complexities of the lives of disabled children and the multifarious nature
of the strategies needed to ensure that their rights are upheld.
It is perhaps in the upholding of the participation rights of disabled children that
the confluence of the study of disability, rights, and childhood really comes into
its own. Consideration of these rights is based on a view of disabled children as
agents who have a right to have a say in their own lives and about the way in which
their other rights are upheld, and as diverse individuals whose lives are impacted not
only by impairment but also—to a larger extent—by the disabling barriers that they
encounter.
The chapters in this handbook have been written within this intersection. The
contributors seek to provide readers with up-to-date knowledge and insights into
the rights and lives of disabled children across different stages of childhood, different
life domains, and different sociocultural contexts. The chapters will, we hope, enable
readers to appraise the current state of affairs regarding the rights of disabled children.
Furthermore, it is hoped that those who engage with the content of this handbook
will be able to apply the knowledge and insights they have gained to help address the
issues faced by disabled children in their daily lives—whether they be researchers or
other practitioners. Finally, the analyses of the current situation of disabled children
in different countries and in different life domains will, we hope, allow and, indeed,
encourage readers to imagine new avenues for the realisation of disabled children’s
rights—avenues that involve working with disabled children in meaningful ways, to
refashion the world in inclusive ways.

Content Summary
This handbook is split into four sections which reflect the conceptual framework set
out in the preceding text. The current situation regarding the rights of children with
disabilities is examined in the first section, Legislation and Policy, with the main focus
being the CRPD and the CRC. This section opens with a chapter by Jonas Ruškus,
Vice Chair of the Committee on the Rights of Persons with Disabilities. Ruškus
presents the argument in favour of the human rights model of disability as the tool
that can best stamp out discrimination against disabled children, particularly in the
areas of institutionalisation and segregated special education. The model’s potential
in promoting the dignity and evolving capacities of children with disabilities is also
discussed. The next chapter, by Ignacio Campoy Cervera, also focuses on the human
rights model. While the focus is on disabled children, Cervera argues that it is the
human rights model that can best guarantee the recognition and protection of the
rights of all children, with or without disabilities. The next two chapters provide
analyses of the reports issued by the UN Committees on the Rights of Persons Dis-
abilities and on the Rights of the Child. Bronagh Byrne examines the Concluding
Observations of the Committees on the Rights of Persons Disabilities over a ten-year

8
 Introduction

span regarding the implementation of Article 7 of the Convention and considers

the extent to which this Convention has advanced disabled children’s rights. Anita
Franklin and Zara Todd then discuss the role that children with disabilities themselves
can play in the monitoring of the rights afforded to them in the two Conventions,
using a participatory research project implemented in the UK as an example of how
such involvement can happen. This chapter and the next one challenge assumptions
that children do not have the capacity to inform high-level policy and monitoring
processes. Elena Jenkin, Erin Wilson, Robert Campain, Kevin Murfitt, and Mat-
thew Clarke report on another project, this time implemented in Vanuatu and Papua
New Guinea. The priorities identified by the disabled children who participated in
this project highlight the importance of taking local contexts into account in the
discourse on human rights. Then, Nick Hodge, Patty Douglas, and Bronagh Byrne
discuss the importance of the CRPD for asserting the rights of autistic children,
especially in education. The final two chapters of this section turn the spotlight onto
social policy, in particular, poverty and social security. Edgar Galea-Curmi analyses
the relationship between poverty and disability, particularly in the Global North.
Zara Trafford examines the impact of social protection on children with disabilities
in low- to middle-income countries, with a focus on South Africa.
In line with the importance of the participation rights of disabled children, the
second section of this handbook is dedicated to children’s voice, within the context
of the CRPD and the CRC. Using Gramsci’s notion of common sense and a critical
art/activist framework, Francesca Bernardi explores how children with disabilities
can be enabled to speak about their lives, thus highlighting how the respect of rights
or lack of it impacts them in their individual circumstances. Elvira Psaila continues
on a similar theme in the next chapter. She presents the Mosaic approach to doing
research with children and then discusses how it can be used not only in research
with disabled children but also by professionals in their practice and by adults in
day-to-day interactions with disabled children, to make sure that their voices are
heard and their perspectives taken into account. The focus then turns to disabled
children’s participation rights in health-related decisions. First, Kevin De Sabbata and
Elena Syurina discuss these rights in relation to the development of health guide-
lines, identify the barriers to disabled children’s participation in this area, and pre-
sent actions to overcome these barriers. Then Rados Keravika discusses these rights
at the individual level, identifying barriers and enabling factors when it comes to
children with disabilities participating in the process of taking decisions about their
own health-related decisions. The last three chapters in this section attend to the
participation rights of children with disabilities who communicate in different ways.
Karian Schuitema discusses the use of arts-based research to enable disabled children
to create their own knowledge and challenge stereotypical ideas about them. Kristin
Vindhol Evensen uses Merleau-Ponty’s embodied phenomenology to explore the
expressivity of children with severe and multiple disabilities and the ways in which
we can gain an understanding of that expressivity. Finally, Lauran Doak analyses the
issues that arise when disabled children do not communicate verbally and the prac-
tices and strategies that should be adopted to discern their views.

9
 Anne-Marie Callus and Angharad E. Beckett

As discussed earlier, the extent to which the rights of children with disabilities
are implemented or ignored often depends on the specific context in which they
live. The next section therefore presents chapters that analyse various aspects of the
life course of childhood, always within the context of the CRPD and the CRC.
Belinda Johnson’s chapter opens this section with a consideration of the applicabil-
ity of Arendt’s concept of natality to babies with disability and how we can ensure
that their futures have as much hope and potential as those of other babies. Begoñia
Rodriguez Díaz then discusses abortion on the basis of disability as a discrimina-
tory and eugenic practice. On their part, Ryan H. Nelson and Jamie Christ discuss
the same issue within the context of the right to abortion more widely. Next,
JosAnn Cutajar analyses the situation regarding babies with disabilities born to
surrogate mothers and the ethical and legal issues that arise. The rest of the chap-
ters in this section move on from infancy to focus on disabled childhoods. Claire
Reinhardt and Amy Robasse discuss the importance for health professionals to
move away from framing disability in terms of a tragedy and deficit-based model
and work within a social model understanding of disability with disabled children
and their parents. Tammy Bachrach and her brother Timothy Woods present an
auto-ethnographic perspective of the latter’s segregated educational experiences in
the United States, while reflecting on developments in educational practices for
children with disabilities over the past 45 years. Cara Shaw and Faraz Nickpour
discuss design of assistive technology and propose what they call ‘designerly ways’
of ensuring that such design promotes the rights of children with disabilities. Con-
tinuing on this theme, Pedro Encarnação and Albert M. Cook discuss different
types of assistive technologies and how they can be used to enable disabled chil-
dren’s rights. The penultimate chapter in this section, by Stephanie Patterson and
Kathleen McGoldrick, focuses on the ethical issues raised by ‘sharenting’, that is,
the sharing on social media details about the lives of disabled children by their par-
ents, and the effect it has on the children’s right to privacy. The section ends with
a chapter by Caroline Ellison, Clara Chapman Van Duivenbode, Fiona Buchanan,
and Nicole Moulding on end-of-life issues for children facing terminal illness or
with life-limiting conditions.
The fourth and final section of this handbook continues with the analysis of
specific contexts and throws light on the various life domains in childhood and how
they affect disabled children, always within the framework of the CRPD and the
CRC. Education is a very important feature of childhood, and in fact, there are three
chapters that tackle this subject, especially in relation to inclusive education. Frederic
Fovet argues how, through the universal design for learning, schools can move away
from the medical model of disability and effect the shift towards inclusion. Rodrigo
Hübner Mendes and Luiza Andrade Corrêa, using the Brazilian education system
as a case study, discuss the need for the right to inclusive education to be fought for
through what they call ‘lawfare’ and the crucial role played by civil society in this
fight. Francesca Peruzzo then turns the spotlight onto the Italian inclusive education
system, which she examines through Foucault’s notion of the dispositif of power and
knowledge, through which she shows how disabled children are cast as subject of

10
 Introduction

medical knowledges. In the next chapter, Tom Humphries, Gaurav Mathur, Donna
Jo Napoli, and Christina Rathmann examine the situation for deaf children and how
their right to language is upheld or denied in different countries. Jenene Burke and
Lisa Stafford then focus on play, presenting their insights into the way in which inclu-
sive playspaces can enable disabled children to exercise their agency. Maren Metell
next examines the right of children with disability to participate in music, both as
a creative expression and as therapy, and the potential for music to create meaning-
fully accessible spaces. The next two chapters focus on disabled adolescents. Gemma
Diaz-Garolera, Maria Pallisera Díaz, and Judit Fullana Noell discuss the extent to
which early adolescents can exercise their right to form friendships and the role
of community agents in promoting this right. Michelle Janzen tackles the topic of
sexual rights. She discusses how protectionism denies disabled adolescents the right
to form intimate relationships, to develop their sexuality, and to access sexual health
and reproductive education. Valentina Migliarini and Chelsea Stinton then discuss
the rights of migrant children with disabilities, with a specific focus on the United
States and Italy. In the final chapter of this last section, Sally Robinson and Jan Idle
draw on research co-produced with disabled children and young people on ways that
enable them and their agency to flourish without overprotection on the one hand
and abuse on the other.

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Another random document with
no related content on Scribd:
 CHAPTER II.
OUR weeks before the next Christmas the Baron
proclaimed there would be good cheer for all comers two
days and nights at the castle. And when the time came,
the bell on the tower, which sounded only for births,
deaths, and weddings, rung merrily through the frosty air, bonfires
were lighted on the hills, the fountain ran wine, and every man who
chose might put in his cup and drink his fill. Outside the wall were
crowds of men gaming, wrestling, and trying their strength, and a few
bloody noses and a cracked skull or two; but that was nothing in
those rough times.
In the hall were knights and earls wearing belt, spur, and plume;
gay ladies in velvets, with sweeping trains; and children pages, and
pert maids, who did nothing but stand under the mistletoe; and then
what kissing, what blushing, what shouts, what laughter! The sun
never shone on so merry a Christmas!
Instead of the red rose, Ginevra wore a coronet of pearls; and in
that goodly company her beauty shone like a star, the brightest
where ten thousand are.
 The ladies’ hall was a lordly room, with long rows of columns,
wreathed with garlands; and there the guests assembled at night. As
they walked together, Ginevra said to Lord Lovel:
“I will give thee a weary chase for me some day. I will frighten
thee now.”
And, with a bound, she darted from column to column, and was
out of sight. Vexed and troubled, Lovel flew after her. He was swift as
a deer, but could not overtake her; and in the midst of the chase, she
stole behind and touched him on the shoulder, laughing merrily at his
fears.
“Promise me, sweetheart,” said he, “thou wilt never fly from me
again, till thou spread thy white wings for Heaven. Even Ban lost his
breath trying to follow thee.”
“I will not promise,” she said, shaking her sunny ringlets. “I love
to tease too well. Ban says my feet have wings, and with them I find
hiding-places where no one can follow.”
“I fear thou wilt be lost in some of these dark passages; no one
living understands all their windings; but I’ll hide thee next
Christmas!”
“Where, my Lord? In the donjon keep, behind the iron gratings?”
“A safer place than that. In my heart, sweet love. There I’ll shut
thee up, and keep thee safe forever and a day.”
Then he gave a close kiss, and did not take his eyes off her till it
was time to part.
When the night was far spent, a strange minstrel came to the
door, and begged to look, if but for one moment, on the Lady
Ginevra.
He was old and poor, and shook with cold. Room was made for
him by the fire; and when he had eaten and drank, he lifted his harp,
and, moving back from the crowd, passed under the mistletoe. Now,
it was a great slight for one to do this and not be kissed, and, of
course, nobody wanted to kiss an old beggar. He heard the laugh
and jeer, and, looking up, saw the green branch; then his head sunk
on his breast with shame. Ginevra saw it, and snatched an ivy
wreath, and stepped toward him, saying playfully,
“Kneel down!”
He knelt and kissed the hem of her robe. Not even she was ever
more beautiful than then.
“I crown thy harp, and call thee knight”—she touched his
shoulder. “Be thou wise, brave, and tuneful. Rise, Sir Minstrel, and
let these lords and ladies hear thy bravest harping.”
For a moment the old man was overcome. Then he swept the
harp with such skill and grace there was instant silence. He sang:
ginevra.
He had heard of her beauty, but the half had not been told; what
his eyes had this night seen would ever be a part of sight; his hand
was weak and old, but so long as he could touch a string it should be
to her name; and at his dying hour thought of her tender pity would
warm his heart as it had never warmed with wine.
Praises ran through the crowd; the Baron sent Alfred with a
purse of broad gold pieces, but the minstrel put it back with a smile,
and unclasped the ragged cloak; down dropped hood, mask, and
gray hair; out stepped a youth, tall, straight, and handsome; on his
neck a sparkling chain the Baron knew right well.
“It is Prince Edward! Long live the Prince!” he exclaimed.
And every man knelt and shouted, till the arches rang,
“Long live Prince Edward!”
He bowed his thanks, and lightly touched the harp again. His
fingers strayed uncertainly among the strings, like one busy with
memory; a moment more, and he seemed to catch the melody, and,
resting his burning glance upon Ginevra’s fair face, he sang:

prince edward’s song.

“In blinding snow, as wild winds blow,
I left the forest’s gloom,
And, following sounds that change the night
To brightness and to bloom,

“I’ve found where all sweet flowers live,

Where summer sings and never dies,
Its roses, Lady, on thy cheek,
Its violets in thine eyes.
 “The harp and sword I bring to thee
Are not an offering meet;
With them, my hand and England’s crown,
I lay before thy feet.

“O, Lady, like the evening star,

Bend to me now or never;
For I will see thee ne’er again,
Unless I see thee ever.”

Then the Prince led Ginevra to the dance, and it was whispered
she was fit to be a queen; but the Baron shook his head, even in that
proud hour, and said:
“She must wed whom she will. I cannot force her heart.”
When the holidays were ended, Lovel set off to Holy Land, to be
gone a twelvemonth and a day. Ginevra wept bitterly, but promised
to keep true heart and constant mind till he should come home,
never, day nor night, to leave her more.
The King’s son tarried and wooed her with words women love to
hear; but she quietly said:
“I will wed my own true love, or die a nun.”
He prayed her to give him a favor, a scarf, a glove, a ring; but no;
she spoke so firmly he saw it was useless to stay longer, and went
away, swearing he would spring into the Thames or the depths of the
sea, and drown himself.
Ginevra watched a splendid train escort him through the forest,
and when it was out of sight, said:
“Ban, dost thou think he will kill himself? It would be a sad thing
to lose our Crown Prince.”
Ban smiled grimly; he had been a wild one, but was tame
enough now.
 “Lady Ginevra,” he said, “ever since the world was made, men
have died from time to time, and worms have eaten them, but not for
love. Prince Edward’s heart is sound; he will marry in less than a
twelvemonth and a day.”
And so he did.
Now there were many curious things about this castle which
have not been mentioned. In the bell-tower, so high, it seemed to
touch the sky, lived a crow, said to be a hundred years old, and an
owl that hooted at night, and winked and blinked by day. There were
lonesome cells where monks used to live; narrow corridors and
winding ways easy to be lost in; and secret doors in odd places
where you would never think of looking for a door; but Ginevra knew
every dark corner from turret to foundation; in every black closet her
bright eyes had peered, and under every hidden archway her fairy
feet had glided along.
 Looking from the highest tower of the castle, a dim line of
heavenly blue marked the Ocean. More than any other view Ginevra
loved that. When the day was fine, she could see the curlews and
herons in the glancing light, and almost hear their screaming and the
lapping of the water among the stones of the pebbly shore.
Sometimes it showed as many tints as though the sea-shells from
the depths had swum to the surface, opened to the sun, and floated
on the top of the waters like many colored blossoms. And when the
sun went down it was a path of gold, a splendor like the pathways of
angels. In calm or storm, in leaden sky or roseate light, through
every change, Ginevra loved the sea. Ban used to watch her to the
top of the tower, and grumble and mutter: “My Lady will come to grief
all along of her skipping and racing into strange places. She’ll be
sorry for it some day.”
“Is it so very hard, my good Ban,” she would say, laughing at
him, “for a strong soldier, who fought in Flanders, to follow one girl
over one house?”
And he would bow and smile back again, as he said:
“I was only thinking of my Lady’s safe keeping. There’s no tiring
me. No, no, no! I would march my feet off for her.”
So petted and guarded, so gay and full of pleasantness was her
life, that every day of the year was happy as a birthday.
The Baron did not worry Ginevra with teachers and grammars.
He did not think much of book knowledge, calling it a weariness of
the flesh, and a wiser man than any Baron called it that, three
thousand years ago. Nor was her nurse allowed to tell her frightful
tales, though the old woman liked nothing better than to scare the
servants with ghost stories in windy nights. Her orders were to tell no
Christmas stories, except such as the Bible told; and she used to
show a book with pictures of the Holy Family, the shepherds listening
to the angels’ songs, heard but once on earth, and the flight into
Egypt. This last was a very choice engraving of Mary, the Virgin
Mother, asleep under a palm-tree, and baby angels bending back the
leaves, smiling sunnily down on the Divine Child, whose light
lightened the bank of lilies where they lay. Then the nurse would
explain how the Mother of Christ still lives, and is always near
motherless children, listening to their prayers and waiting to comfort
them. And Ginevra loved the tale and believed it, and never spoke a
word she would not wish the Holy Mother to hear.
In those good old times people played and laughed more than
we do, and a first-rate story-teller was better thought of than a fine
musician nowadays.
 So, with play and needlework, time went on. Knights, earls, and
gentlemen tried to win Ginevra from her vows; but she sent them
away more madly in love than when they came to offer hand and
heart. At the hour when the nightingale sings, minstrels and lovesick
troubadours harped under her lattice; but she kept true heart and
constant mind, and when six months had passed, a carrier-dove—a
tame, fond thing—flew to the balcony, bearing a letter tied around its
neck, sealed with red, and stamped with a rose. It was from Lord
Lovel, who wrote he would be home Christmas.
The Baron went to London for her wedding-clothes. They were
rich and rare as any princess’s; her veil was like silver mist; but
nothing was so fine as a pair of slippers of white velvet, embroidered
with pearls. Had you seen them, you would have said they were for
some little child.
 CHAPTER III.
HRISTMAS came, and home came Lord Lovel on his milk-
white steed.
The night before the wedding the Baron brought to
Ginevra a curiously carved ivory box.
“This is thy mother’s wedding gift,” said he. “Now is the time to
open it.”
He took from his purse a small gold key. Ginevra turned the lock.
The lid flew up, and showed a heap of strung pearls, each one large
as a robin’s egg.
“They are beautiful!” exclaimed Ginevra, in delight.
“Beautiful!” echoed Geta.
“Yes,” said the Baron. “Their like is not in old England. I bought
them at Constantinople, when I was returning from Palestine.”
He lifted the long rope, and wound it round his daughter’s neck.
“They are fair, my darling,” said he, tenderly, “but thy throat is
fairer.”
Ginevra looked dreamily at the jewel-case; then, turning her
eyes inquiringly to her father’s, she suddenly asked:
“Was my mother happy?”
“Happy in that she died young,” answered the Baron, gloomily.
“Wouldst thou say that of me?” she asked, in wondering
sadness.
“No, sweet child. Thou art dear to me as the blood-drops of my
heart; and had I as many lives as thou hast hairs on thy head, I
would give every one of them for thee, my precious pearl. But no
more of this! See, here is thy wedding-ring, my gift to thy mother,
engraved with the name of both—Ginevra. I had it from a Jew in
Venice. He said it bore a charm, and always brought good fortune to
the wearer. And so it has; it has brought me thee.”
Ginevra laid the jewels back on the violet velvet lining, and was
soon chatting gayly with Geta; but the Baron was restless and
uneasy. When he said good-night he strained her to his heart and
kissed her again and again, as if it were a last parting; then he
doubled the guards of the castle, walked the great hall, and made
the grand rounds like one whose anxious thoughts will not let him
rest.
Ginevra’s quick eye marked the movements of the Baron, and
she waited till he rested a moment in his favorite seat by the
chimney-corner, and, seating herself on the heavy arm of the oaken
chair, she said:
“Is my father troubled to-night? Tell me what the trouble is, and I
may chase it away.”
“No, no, little one,” answered the Baron, making an effort to
smile, “but—”
“But what? Go on! What, father?”
“Only this, dearest. Art thou sure of being perfectly happy?”
“Entirely sure; but I could not be if Lovel should take me from
thee.” She patted his cheek, then touched her blooming mouth to it.
“He will not come between us, child. Nothing on earth, nothing
outside of heaven, can do that. But listen, what a fearful night! How
the sea rises, like a fierce beast chained, roaring for its prey! The
coast will show wrecks to-morrow.”
“And is it that which makes thee so uneasy, so sorry?”
“No; but the raging swell, which we hear here as a weak
moaning, stirs strange thoughts and brings up strange scenes,
vanished long ago. The sea has changing voices. Now as we listen, I
hear great guns booming shot and shell, the rush of thousands of
feet, the tramp of armies fighting. I loved it when I was a young man;
but it is not the same, because I am not the same. Then it spoke to
me of the future; now it is all of the past. As I hold your dear hand”—
he touched the pinky finger-tips to his lips as he spoke—“I am
hearing a text my mother taught me (God rest her soul!): “Boast not
thyself of to-morrow.”
“But you have not boasted.”
“No; we seem over-confident, and there is a happiness that
makes my soul afraid. Look out!”—he pointed to the window—“I
thought I saw something pale, a tall shape fly by the window. There!
Now!”
“You might have seen a pale shape half an hour ago in the dusk,
where the sun left a little light. It is all black darkness now.” She rose,
drew aside the curtain, and knelt on the deep window-sill among the
roses. “I see nothing but dark. The wind howls like a mad thing in the
air, trying locks and bolts to get in. Sad for the poor sailors and their
wives waiting at home. Maybe they will never come back, poor
things!”
She returned to her place beside the Baron, who looked silently
into the fire; her pretty head drooped on his shoulder, and he leaned
his cheek to hers, her hand in his.
“My daughter!” he said, in a tone he never used to aught on
earth but her.
“My father!” she answered, softly as a wind-harp sounds.
“I would have my baby once more.”
He turned to the maid:
“Geta, go get your mistress ready for bed. Wrap her in my
Siberian mantle. She shall rest to-night in the arms which were her
first cradle, and I shall rock her to sleep.”
Ginevra laughed. “I can easily be a child again. I have only to go
a few steps backward,” and she disappeared with Geta.
A moment later she was robed in a snow-white mantle which
muffled her from head to foot. And, like a wintry fairy, she passed her
chamber door, where her father stood waiting. He caught her up
from the floor.
“Take care of the baby feet,” he said. “These floors are never
warm. Thou art all fair, my love. We will not go below. We will sit in
the brown parlor.”
This was a small room adjoining Ginevra’s bedroom, where there
was a cumbrous chair, called Prince Rupert’s, which was shaped like
a throne. The walls were made strange with portraits—men in queer
costumes looking stiff and ghastly, women rigid as pasteboard,
except the picture of one young girl in long bodice and flowing skirt,
around her hounds and huntsmen, a hawk on her wrist, her horse at
hand ready for mounting—a lovely lady. This was Ginevra’s mother;
and she loved the portrait, and always kept a lamp of perfumed oil
burning below it.
The fire was low and ashy in the big fire-place. The Baron blew a
silver whistle, and while waiting for a servant to answer the call, he
kicked together the chunks of logs, sending a train of fiery sparkles
up the chimney.
“Make haste, man!” he said, impatiently. “Heap on the wood.”
The obedient servant piled it from a box like a high, old-
fashioned bedstead, which held at least a half cord of logs.
“Quick! quick! What carelessness! This room is cold as death.”
The man went out soon as he could escape, and reported to the
servants that the Baron was in one of his tiger fits. They wondered
why, when he was so pleased over the wedding, and in their own
hall they talked it over with many wonderments.
But the lord of the castle had no dark mood, no tiger fit for
Ginevra.
“Now, my darling,” said he, holding the light shape across his
breast, while he wrapped the fur round her feet, “now I have my little
girl all mine own for the last time. What shall I sing?”
“About the Norse kings, father. How they used to steal their
brides and sail away over the foaming North seas to the lands of
snow and ice.”
The Baron was not much of a singer; but the deep roll of his
voice well suited the thunder of the storm without. A strange cradle-
song, to be sure, of fighting, of hunting, of blood, and of victory. An
hour passed. There was no rift in the clouds, no lull in the dismal
wind. Then the snow began to fall—the hushing snow, which seems
to quiet heaven and earth.
“It will be fair to-morrow,” said Ginevra, sleepily, rousing a little.
“That was a brave song of the pirates. Now the wind goes down.”
She opened the clear blue eyes once more and smiled, showing the
pearly little teeth. “Good-night. Do not let me tire you, father dear;”
and so, murmuring love words her nurse had taught, she went to her
innocent dreams—in all the kingdoms of sleep, the sweetest thing
that breathed.
It snowed and it snowed and it snowed. Toward morning the
castle was a very castle of silence; and the noiseless world lay like a
cold white corpse in its cold white shroud.
Ginevra, lapped in downy fur, nested like a bird in her father’s
breast, and he watched the delicate, upturned face with a watch that
knew no weariness, till gray dawn broke over the earth, and the
hilltops were tipped with silver.
Many times he touched her feet to feel if they were warm. Many
times he leaned his ear to her fragrant breath and softly wound a
stray curl of her hair, in rings of gold, round his forefinger. He
hummed verses of old tunes some lost love sang in the years long
gone, when he was young; and once he whispered a prayer.
Fond, foolish old man! Why wore he the night away in such sad,
sweet watching, when there was nothing to make afraid?
 CHAPTER IV.
OVELY was the bride, next day, in her white robe, fastened
with golden clasps, every clasp set with an emerald stone;
her vest of gold, embroidered with flowers; her floating
veil like silver mist, morning blushes on her cheek, and
pearls upon her breast. The heavy snow which had fallen in the night
did not keep away the wedding guests. They came early in spite of
storm and cold. The priest was there; the joy-bells rang; the prayer
was said, the blessings given; and never, day nor night, would Lord
Lovel part again from Ginevra.
As they sat at the feast, suddenly the bride was missed from the
side of her lord. He hastily left the table, and in a few minutes
returned and whispered to the Baron.
“’Tis one of her childish plays, a trick only to make a trial of our
love,” said the Baron, trying to smile. “One more health to Lady
Lovel! Fill high the glasses!”
He raised a goblet, but his hand shook; and when he tried to lift
the red wine, it poured down the table, like a stream of blood. And
soon from guest to guest the panic spread.
“Good friends,” he cried, springing to his feet, “there’s not a
moment to spare. Lady Ginevra is missing—perhaps lost. Lovel, my
son, look for her in the main buildings, where I know she is. My Lord
of Cranston, with his vassals, will hunt through the south wing.
Huntingdon and his followers will search the north wing. Do thou,
Ban, go through the vaults and cellars, leaving no stone unturned.
Report to me here.”
The veins in the Baron’s face swelled out like cords; great drops
of sweat gathered on his forehead; his lips were pale as ashes. And
the brave men around him turned white and trembled. They
remembered the prophecy—the Lady Ginevra is doomed.
With lighted torches, they scattered to their work. Along the
galleries Lovel shouted, “My life, my love, come to me! Come, or
thou art lost!” There was no flying footstep, no ringing laugh, no veil
like silver mist, only cold and dark, and the mocking echo, Lost, Lost!
When he passed the grand staircase, he felt drawn toward the wall.
He thought there was a noise. They listened.
“Be still, Alfred; I am sure I hear a step,” said Lovel, eagerly
clasping his hands together, like one in prayer.
“No,” said Alfred; “it is a rat scratching behind the wainscot.”
They listened again. Surely something stirred. Hush! They held
their breath. A sound nearly like a sob; another; one more; then all
was still as the breast when the spirit has fled.
Lovel looked into the tall clock, where she could easily stand
upright, behind, under, above it, and found nothing but dust and
cobweb. “My lamb, my dove,” he cried, “come home, or thou art
lost!” Lofty arch and empty distance rang with the sound, but gave
back no answer.
Meanwhile, the Baron strode up and down the hall, like a hungry
lion in his cage. He looked so awful no one but little Geta dared go
near him. Every time the clock struck he would say:
“Geta, is thy Lady’s chamber warm?”
“Warm, my lord.”
“And light?”
“Light, my lord.”
“Her slippers by the fire?”
“Yes, my lord. She would find the bath and all ready, were she
here this very minute.”
“I would to God she were here, Geta!”
 Ah! bitter chill the night was! The owl, for all his feathers, was a-
cold. The wind raved and tore at the windows, and sleety snow
whirled and hissed and drifted against them, and under the loose old
casements. The Baron groaned in anguish; in this wild storm, where
was his tender child the winds of heaven had never visited too
roughly? Where? Oh! where?
 At daybreak the companies straggled back. Not a word was
spoken. The beloved was not found. They breakfasted on the cold
meats of the wedding-feast, and every time a door opened, turned
and looked as if to see her dancing home as she had danced away.
Without food or rest, Lord Lovel—oh, how changed!—hunted the
highest, the lowest, the loneliest spot, calling her by every dear
name. “Come to me! Come, or thou art lost!” And the wind, moaning
through black arch and freezing gallery, gave back the echo, Lost!
Four days and nights were wasted thus. Then they met in the
hall, and, in a hoarse, changed voice, the Baron spoke:
“Thanks, my friends, every one. Be it remembered, he who
bringeth me trace of the Lady Ginevra, or clew to her finding, shall
have what he may ask, were it half my barony.”
Deep lines in his face showed how he had suffered, and his hair,
that yesterday was streaked with gray, was white as wool. The
wedding guests turned to go, and then the great bell in the tower
struck one. There was silence deep as death. Hark! two, three, four;
it rang to seventeen. What could it be?
No one inhabited the bell-tower, and, except under orders, the
ropes were never touched. That sound, so dread, so solemn, struck
on every ear, like a voice from heights beyond the living earth; the
cry of some desolate soul passing through cloudy spaces, the dim
region between two worlds. Could it be fairy hands tolling the
passing bell for the soul of Ginevra? Was it a ring from heaven that
her presence was lost from the abodes of the living, that she must
now be numbered with the dead? These questions have not been
answered, and will not be answered till the great day comes which
ends all question and brings each hidden thing to light.
Till this time the Baron had not shed a tear. When the last sad
tone moaned and trembled through the air, he hid his face in his
hands, and big drops ran through his fingers, like fast rushing rain.
Children clung to their mothers; women sobbed together in a
crowd; and warlike men, too brave to be ashamed of tears, fell into
each other’s arms and cried aloud.
 Never were wedding guests like those who that day passed the
icy fountain and through the hushing snow of the leafless forest,
where the wind was wailing farewell forever, and forever farewell.
From the lonesome hemlocks, loaded with snow, Lovel went
back alone to Ginevra’s chamber. Garlanded with roses, it was light
and warm; the tiny slippers were before the fire; her lute, her birds,
her needlework, were there; but the Rose of the World was missing;
missing the little feet that nevermore would lightly run to meet him,
nevermore would lightly follow.