BookPDF Available

The Routledge Handbook of Disability Activism

Authors:

Abstract

The onslaught of neoliberalism, austerity measures and cuts, impact of climate change, protracted conflicts and ongoing refugee crisis, rise of far right and populist movements have all negatively impacted on disability. Yet, disabled people and their allies are fighting back and we urgently need to understand how, where and what they are doing, what they feel their challenges are and what their future needs will be. This comprehensive handbook emphasizes the importance of everyday disability activism and how activists across the world bring together a wide range of activism tactics and strategies. It also challenges the activist movements, transnational and emancipatory politics, as well as providing future directions for disability activism. With contributions from senior and emerging disability activists, academics, students and practitioners from around the globe, this handbook covers the following broad themes: • Contextualising disability activism in global activism • Neoliberalism and austerity in the global North • Rights, embodied resistance and disability activism • Belonging, identity and values: how to create diverse coalitions for rights • Reclaiming social positions, places and spaces • Social media, support and activism • Campus activism in higher education • Inclusive pedagogies, evidence and activist practices • Enabling human rights and policy • Challenges facing disability activism The Routledge Handbook of Disability Activism provides disability activists, students, academics, practitioners, development partners and policy makers with an authoritative framework for disability activism. Taylor & Francis 2019 Outstanding Handbook - Social Sciences - Award Winner http://www.routledge.com/The-Routledge-Handbook-of-Disability-Activism-1st-Edition/Berghs-Chaitaka-El-Lahib-Dube/p/book/9780815349303 http://www.taylorfrancis.com/books/e/9781351165082 http://www.disabilityactivism.com/
THE ROUTLEDGE HANDBOOK
OF DISABILITY ACTIVISM
The onslaught of neoliberalism, austerity measures and cuts, impact of climate change,
protracted conicts and ongoing refugee crisis, rise of far right and populist movements have
all negatively impacted on disability. Yet, disabled people and their allies are ghting back
and we urgently need to understand how, where and what they are doing, what they feel
their challenges are and what their future needs will be.
This comprehensive handbook emphasizes the importance of everyday disability
activism
and how activists across the world bring together a wide range of activism tactics and
strategies. It also challenges the activist movements, transnational and emancipatory politics,
as well as providing future directions for disability activism.
With contributions from senior and emerging disability activists, academics, students
and practitioners from around the globe, this handbook covers the following broad themes:
Contextualising disability activism in global activism
Neoliberalism and austerity in the global North
Rights, embodied resistance and disability activism
Belonging, identity and values: how to create diverse coalitions for rights
Reclaiming social positions, places and spaces
Social media, support and activism
Campus activism in higher education
Inclusive pedagogies, evidence and activist practices
Enabling human rights and policy
Challenges facing disability activism
The Routledge Handbook of Disability Activism provides disability activists, students, academics,
practitioners, development partners and policy makers with an authoritative framework for
disability activism.
Maria Berghs is an anthropologist with a PhD in sociology and social policy. She works
in the eld of medical anthropology and sociology, specialising in disability studies. Her re-
search interests include disability, global health (sickle cell), humanitarianism, ethics, gender
and West Africa (Sierra Leone).
Tsitsi Chataika is the Chairperson and a Senior Lecturer in disability and inclusive edu-
cation in the Department of Educational Foundations, University of Zimbabwe. Her recent
publication is The Routledge Handbook of Disability in Southern Africa.
Yahya El-Lahib is a long-time disability activist and Assistant Professor at the Faculty of
Social Work, University of Calgary. His research focuses on the intersection of disability and
displacement as interlocking systems of oppression that continue to shape the marginaliza-
tion experiences of people with disabilities within and outside state borders.
Kudakwashe Dube is the Chief Executive Ocer (CEO) of the Africa Disability Alliance
and has over 30 years of experience designing, managing, evaluating and monitoring devel-
opment and disability programmes with international and grassroots movements. He is also
Chair of Trustees of ADD International that ghts for independence, equality and opportu-
nities for disabled people living in poverty, alongside organisations of disabled people.
ROUTLEDGE INTERNATIONAL HANDBOOKS
ROUTLEDGE INTERNATIONAL HANDBOOK OF POVERTY
Edited by Bent Greve
ROUTLEDGE INTERNATIONAL HANDBOOK OF NEW DIGITAL
PRACTICES IN GALLERIES, LIBRARIES, ARCHIVES, MUSEUMS AND
HERITAGE SITES
Edited by Hannah Lewi, Wally Smith, Dirk vom Lehn and Steven Cooke
ROUTLEDGE INTERNATIONAL HANDBOOK OF H UMAN
TRAFFICKING
A Multi-Disciplinary and Applied Approach
Edited by Rochelle L. Dalla and Donna Sabella
THE ROUTLEDGE HANDBOOK OF COMPAR ATIVE RURAL POLICY
Edited by Matteo Vittuari, John Devlin, Marco Pagani and Thomas Johnson
ROUTLEDGE INTERNATIONAL HANDBOOK OF M ASCULINITY
STUDIES
Edited by Lucas Gottzén, Ulf Mellström and Tamara Shefer
ROUTLEDGE HANDBOOK OF EUROPEAN WELFARE SYSTEMS, 2E
Edited by Sonja Blum, Johanna Kuhlmann and Klaus Schubert
ROUTLEDGE INTERNATIONAL HANDBOOK OF H ETEROSEXUALITIES
STUDIES
Edited by James Joseph Dean and Nancy L. Fischer
For more information about this series, please visit: www.routledge.com/Routledge-International-
Handbooks/book-series/RIHAND
THE ROUTLEDGE HANDBOOK
OF DISABILITY ACTIVISM
Edited by
Maria Berghs, Tsitsi Chataika,
Yahya El-Lahib and Kudakwashe Dube
First published 2020
by Routledge
2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN
and by Routledge
52 Vanderbilt Avenue, New York, NY 10017
Routledge is an imprint of the Taylor & Francis Group, an informa business
© 2020 selection and editor ial matter, Maria Berghs, Tsitsi Chataika,
Yahya El-Lahib and Kudakwashe Dube; individual chapters, the
contributors
The right of Maria Berghs, Tsitsi Chataika, Yahya El-Lahib and
Kudakwashe Dube to be identied as the authors of the editorial
mater ial, and of the authors for their individual chapters, has been
asserted in accordance with sections 77 and 78 of the Copyright, Desig ns
and Patents Act 1988.
All rights reserved. No part of this book may be reprinted or reproduced
or utilised in any form or by any electronic, mechanical, or other
means, now known or hereafter invented, including photocopying and
recording, or in any information storage or retrieval system, without
permission in writing from the publishers.
Trademark notice: Product or corporate names may be trademarks
or registered trademarks, and are used only for identication 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
A catalog record has been requested for this book
ISBN: 978-0-8153-4930-3 (hbk)
ISBN: 978-1-351-16508-2 (ebk)
Typeset in Bembo
by codeMantra
This book is dedicated to the people who have gone before us; who set
the foundations for disability rights, those who are ghting now to ensure
continued justice, equality and equity; andto those who come after us
who with more sharpened advocacyandlobbying skills will build a more
inclusive world.
In memory of
Shamiso Michelle Dube (29.12.2000–28.03.2002)
‘It’s just a world where all things come and go,
It’s just a world where all things come and go,
Don’t you cry, don’t despair;
I went – it was my time to go.
ix
CONTENTS
List of contributors xiv
Acknowledgements xxviii
PART I
Introduction – contextualising disability activism 1
Introducing disability activism 3
Maria Berghs, Tsitsi Chataika, Kudakwashe Dube & Yahya El-Lahib
A virtual roundtable: re/dening disability activism with
emergingglobalSouth disability activists 21
Tsitsi Chataika (ed), Samantha Sibanda, Abraham Mateta &
KrishnaBahadurSunar
PART II
Neoliberalism and austerity in the global North 39
1 The impact of neoliberal politics on the welfare and survival of
chronically ill and disabled people 41
Mo Stewart
2These days are ours’: young disabled people’s experiences of activism
and participation in social movements 57
Miro Griths
3 The links between models and theories to social changes as seen and
understood by activists and academics: what works? 71
Joanne Sansome
Contents
x
4 Figures: an artist-activist response to austerity 81
Liz Crow
5 As technology giveth, technology taketh away 87
John Rae
PART III
Rights, embodied resistance and disability activism 95
6 Exercising intimate citizenship rights and (re)constructing sexualities:
the new place of sexuality in disability activism 97
Alan Santinele Martino & Margaret Campbell
7 ‘I show the life, I hereby express my life’: activism and art in the
political debate between social movements and institutions on
D/deafbodies in Italy 110
Fabrizio Loce-Mandes
8 Resisting the work cure: mental health, welfare reform and the
movementagainst psychocompulsion 128
Denise McKenna, Paula Peters & Rich Moth
9 My disability, my ammunition, my asset in advocacy work 144
Tafadzwa Rugoho
PART IV
Belonging, identity and values: diverse coalitions for rights 155
10 Disabled mothers of disabled children: an activism of our
childrenand ourselves 157
Liz Crow & Wendy Merchant
11 Dementia as a disability 171
Kate Swaer, Brian LeBlanc & Peter Mittler
12 Voices from survivors of forced sterilisations in Japan: Eugenics
Protection Law 1948 –1996 182
Nagase Osamu
13 Indigenous Species 190
Khairani Barokka
Contents
xi
PART V
Reclaiming social positions, places and spaces 195
14 Disability sport and social activism 197
Damian Haslett & Brett Smith
15 Naples in the hands: activism for aesthetic enjoyment 209
Ciro Pizzo, Carmela Pacelli & Maria Grazia Gargiulo
16 Pissed o!: disability activists ghting for toilet access in the UK 219
Charlotte Jones, Jen Slater, Sam Cleasby, Gill Kemp,
EleanorLisney&SarahRennie
17 Mobility-as-occupation: non-confrontational activism in
Trin idada nd Tob a g o 232
Sylette Henry-Buckmire
PART VI
Social media, support and activism 245
18 The tragedy of the hidden lamps: in search of disability rights
activists from the global South in the digital era 247
Nqobani Dube
19 ‘With the knife and the cheese in hand!’: a virtual ethnography of the
cyber-activist disabled movement in Brazil and its transnational impact 259
Marco Antonio Gavério, Anahi Guedes de Mello & Pamela Block
20 Australia’s treatment of Indigenous prisoners: the continuing nature
of human rights violations in West Australian jail cells 274
Hannah McGlade
21 ‘Lchad Poland’ and the ght against inequality: the role of internet
advocacy in cases of a rare genetic condition 289
Anna Chowaniec-Rylke
PART VI I
Campus activism in higher education 297
22 Beyond random acts of diversity: ableism, academia & institutional
sitesofresistance 299
Stephanie J. Cork, Beth Douthirt-Cohen, Kelly M. Homan, Paul T.
Jaeger&AmandaStrausser
Contents
xii
23 At the margins of academia – on the outside, looking in:
refusing,challenging and dismantling the material and
ideologicalbases of academia 315
Armineh Soorenian
24 Sensitisation: broadening the agenda to ‘include’ persons with disabilities 323
Pragya Deora
25 Rainclamation: how installation art can reclaim space, transform
collective suering into poetic resistance and bring aesthetics to
disabled viewers 330
Erin Davenport
PART VIII
Inclusive pedagogies, evidence and activist practices 339
26 Zimbabwean disability activism from a higher education perch: an
uncertain present but exciting future 341
Martin Musengi
27 Research as activism?: perspectives of people labelled/with
intellectual and developmental disabilities engaged in inclusive
research and knowledge co-production 354
Ann Fudge Schormans, Heather Allan, Donavon O’Neil Allen, Christine
Austin,Kareem Elbard, Kevin John Head, Tyler Henderson, Karrissa Horan-
LaRoche,Rainbow Hunt, Nathan Gray, Rex Marchi, Donna McCormick,
RomeoDontae Tresean Biggz Pierre & Sean Rowley
28 Reinventing activism: evidence-based participatory monitoring as a
tool for social change 369
Marcia Rioux, Paula Campos Pinto, Dagnachew Wakene, Rados Keravica
&JoseViera
PART IX
Enabling human rights and policy: Transition: international politics 383
29 Implementation of CRPD in the post-Soviet region: between
imitation and authenticity 385
Egle Sumskiene, Violeta Gevorgieniene & Rasa Geniene
30 Swedish disability activism: from welfare to human rights? 398
Marie Sépulchre & Lars Lindberg
Contents
xiii
31 Gendered disability advocacy: lessons from the Girl Power
Programme in Sierra Leone 412
Emma Frobisher, Willem Elbers & Auma Okwany
32 We need not remake the past’: rebuilding the disability
movementinToronto, Canada 428
Melissa Graham
PART X
Conclusion – the coming challenges and future directions 435
33 Causes and eects of claims for rights: why mainstreaming inAfrica
matters 437
Kudakwashe Dube
34 Unsettling realities and rethinking displacement: transforming
settlement services for refugees, migrants and people with
intellectualdisabilities 452
Natalie Spagnuolo & Yahya El-Lahib
35 Disability futures: activism futures and challenges 465
Maria Berghs, Tsitsi Chataika, Yahya El-Lahib & Kudakwashe Dube
Index 471
xiv
CONTRIBUTORS
Heather A llanidenties herself as a unique-abilities person with a love for life. Heather has
spoken at many events about Williams Syndrome. Heather is a co-researcher with the Part-
nering for Change Research Project, a multi-city, multi-year research project in Ontario, Canada
exploring the intersections and pathways through homelessness, education, and employment
services for youth labelled with intellectual and developmental disabilities. She hopes to use
her sympathetic nature to help other people.
Donavon O’Neil Allenis a former ward of the child welfare system. He is a founding
member of the Voyager Project and thinks of himself as the ‘glue’ that bridges the dierent
generations of Voyagers together. He is also a co-researcher with the Partnering for Change
Research Project. He is interested in nding solutions to address the complex and multitude of
problems facing homeless youth with learning, developmental or mental disabilities.
Christine Austinis an advocate for the intimate rights of disabled mothers. In 2002, she re-
ceived the Cindy Niemi award for her work on disability issues and access to post- secondary
education. Having been interviewed by the media, she has also made numerous presentations
on women, disability and abuse. She brought this knowledge to her work as a co-researcher
with the Re-imagining Parenting Possibilities Project. She is actively involved in sharing this work
through conference and community presentations and forum theatre workshops.
Khairani Barokkais a writer, poet and artist, whose work has been presented extensively
in 15 countries. She is Modern Poetry in Translation’s Inaugural Poet-in-Residence. Among
her honours, she was an NYU Tisch Departmental Fellow and Vermont Studio Center’s rst
Indonesian writer-in-residence, and is a UNFPA Indonesian Young Leader Driving Social
Change for arts practice and research. She is co-editor of Stairs and Whispers: D/deaf and Dis-
abled Poets Write Back (Nine Arches), author-illustrator of Indigenous Species (Tilted Axis), and
author of Rope (Nine Arches Press). Recent exhibitions were at SALTS Basel and the ICA in
London. She is a PhD candidate in Goldsmiths’ Visual Cultures Department.
Maria Berghsis a Lecturer at De Montfort University in the UK. She works in the eld of
medical anthropology and sociology, specialising in disability studies. Her current research
projects are on sickle cell in Sierra Leone and the UK.
Contributors
xv
Pamela Blockis a Professor of Disability Studies, focusing on health promotion,
community- building and capacity-building for autistic and disabled people and groups. She
teaches in the doctoral program in Health and Rehabilitation Sciences and is Director of
the Graduate Certicate in Disability Studies. Her recent book Occupying Disability is
a co- edited volume exploring concepts of ‘occupying’ and ‘decolonizing‘ disability across
the elds of disability studies, anthropology and applied health elds such as occupational
therapy. She is a former President of the Society for Disability Studies (2009–2010), and a
Fellow of the Society for Applied Anthropology.
Margaret Campbell’sresearch examines intersections of disability, gender, and sexuality
by exploring the varied ways that people with disabilities experience their gender and sexu-
ality. As an individual who lives with a chronic illness, work and identity often collide as she
pursues various research interests such as the sociology of the body, disability studies, and the
sociology of gender and sexuality. Margaret has taught courses on the Sociology of Disability
at Mount Allison University and the Sociology of Gender at Concordia University. Margaret
is currently completing her PhD in Social and Cultural Analysis at Concordia University.
Tsitsi Chataikais the Chairperson of the Department of Educational Foundations and also
a senior lecturer in disability and inclusive education at the University of Zimbabwe. Her
research interests allow her to understand how disability intersects with education, work,
gender, culture, religion, childhood studies, development and postcolonialism. Chataika has
several publications and her most recent edited book is the ‘The Routledge Handbook of
Disability
in Southern Africa’. She was She has presented at various national and international platforms;
and facilitates workshops on inclusive development and inclusive education in Africa; thus
promoting inclusive sustainable development with implications for policy and practice.
Anna Chowan iec-Rylkeis a PhD student of anthropology at the University of Warsaw.
Her main areas of interests are rare and genetic disorders, which are the topic of her doctoral
thesis. She was an assistant researcher in two projects nanced by the Polish National Science
Center and her articles were published in Polish anthropological journals. She also wrote a
book chapter on children, health and childhood studies. She has presented her work at var-
ious international conferences.
Sam Cleasbyis a writer, blogger and radio presenter from Sheeld and works for disability
charity, Scope. She has a chronic illness and a permanent ileostomy and is passionate about
raising awareness and supporting disabled people. She is a mum of three teenagers and can
be found on her award-winning blog, So Bad Ass Me, breaking the taboos around poo and
sharing her experiences of life with an ostomy bag.
Stephanie J. Corkreceived her PhD in Kinesiology (Physical Cultural Studies) from the
School of Public Health at the University of Maryland, College Park. Prior to moving to
the United States, Stephanie completed her Bachelor’s (Honours) and Master’s in Sociology
at Queen’s University in Kingston, Ontario. Her research focuses on diversity, inclusion,
equity and justice with a special interest in supporting the disability community within
higher education. Stephanie is extremely involved with service and teaching at her current
institution and has worked with many campuses entities on large scale projects such as Dis-
ability Awareness Month, the Disability Studies Minor, The UMD Disability Summit, and
the Student Facilities Fund: Lactation Room Improvement Project.
Contributors
xvi
Liz Crowis a British disabled woman and long-time activist and artist. She is a doctoral can-
didate at University of West of England, undertaking practice-led research into methodolo-
gies of activism. Liz is also mother to a teenager who has recently become a disabled person.
Erin Davenportis a graduate student at UNC-Chapel Hill. She graduated from Davidson
College with a B.A. in Political Science in May, where she was Editor-in-chief of the
Davidson student newspaper, a Leadership Fellow, and a passionate advocate for minority
rights on campus and beyond. Erin is interested in the intersections between academia,
arts, and activism, which she explored through an installation art project, Rainclamation.
The project allowed Erin to travel and present at many conferences, including two in
Europe, and caused her to realize a passion for sociology, which she is now pursuing in
graduate school.
Pragya Deorais a 2018 Batch Indian Information Service Ocer currently undergoing
training. She did Bachelor of Commerce from University of Delhi and M. A. and MPhil
in Sociology from Jawaharlal Nehru University. She has worked and delivered talks on a
range of issues confronting persons with disabilities. She has been a part of organising team
of various conferences on disability. She was also the rst woman convenor of JNU Visually
Challenged Students’ Forum. Pragya was a part of Anubhav Lecture Series organised by the
Harris School of Public Policy at University of Chicago for capacity development of individ-
uals working at grassroots in India. Social entrepreneurship is one of Pragya’s key interests
and she believes in nding sustainable solutions to social problems.
Beth Douthirt-Cohenis currently the Executive Director of Diversity, Equity and Inclu-
sion at Frederick Community College, where she leads and supports eorts to strengthen
inclusion throughout the College. Previously, she was the Deputy Chief Diversity Ocer at
the University of Maryland (UMD) where she directed various prejudice reduction eorts
and educational initiatives to further social justice, including UMD’s Intergroup Dialogue
programme. A person with a disability, Beth is part of the Calico Hill Collective, a group
of social justice educators seeking to further racial, disability, gender, LGBTQIA, class,
religious, and immigrant justice, healing and processes of truth and reconciliation across
all dimensions and intersections of oppression. Beth has her undergraduate degree in from
Barnard College of Columbia University, her M.Ed. from Harvard University, and her PhD
from UMD.
Kudakwashe Dubeis the Chief Executive Ocer (CEO) of the Africa Disability Alliance
and has over 30 years of experience designing, managing, evaluating and monitoring devel-
opment and disability programmes with international and grassroots movements. He is also
chair of trustees of ADD International that ghts for independence, equality and opportuni-
ties for disabled people living in poverty, alongside organisations of disabled people.
Nqobani Dubehas a Master of Arts in development and human rights from Swansea
University. His thesis focused on land reforms and livelihoods of people with disabilities in
Africa. In the past 12 years, he has extensively worked in dierent roles around southern
Africa for various disability organisations and the Government of Zimbabwe. This strength-
ened further his research and work, which revolves around the intersections of disability
inclusion with development and humanitarian interventions. Nqobani remains interested in
representations of disability rights activism in popular culture and radical pedagogy.
Contributors
xvii
Kareem Elbardworks in various capacities, promoting awareness about disability and in-
timacy issues and supporting others labelled/with intellectual disabilities. He presented at
an international conference on Disability and Diversity in Rome (2008). His presentation
highlighted how supports, societal and institutional discrimination, form his possibilities
as a disabled man in relation to employment, intimacy and health. As a co-researcher with
the Re-imagining Parenting Possibilities Project, he interviewed key informants and people with
lived experience of parenting and intimacy stories to share across Ontario; and participated
in the development of forum theatre scenes as a means of sharing lessons learnt.
Willem Elbersis senior research fellow at the African Studies Centre at Leiden University
(Netherlands) since 2015, where he heads two research projects on advocacy in the global
South. While one of these projects examines advocacy strategies targeting the rights of
children with disabilities in Sierra Leone, Cameroon and Zambia, the other focuses on the
role of international agencies in enabling and constraining local advocacy on the ground.
Willen is also the coordinator of the Advanced Master in International Development, a post-
graduate programme seeking to enable excellent MA-graduates to pursue a career in the
eld of international development.
Yahya El-Lahibis an assistant professor at Calgary University in Canada. As a disability
activist, Yahya’s research, practice and policy background is centred on working on disabil-
ity issues at all levels of intervention; from frontline work with individuals and families, to
community practice, policy development, and research on a variety of issues. These include
education, employment, poverty, political and civic engagement, and the impact of war.
Yahya is closely aliated with the disability movement in Lebanon, working from a grass-
roots social justice approach, which has informed his community involvement, teaching and
research in Canada, a critical transnational dimension to social work.
Emma Frobisheris a Junior Researcher and a doctoral fellow at the African Studies
Centre at Leiden University. She holds a Master’s degree in Development, with a major in
Social Policy for Development, from the International Institute of Social Studies of Erasmus
University Rotterdam, from where she graduated in December 2016. She has also worked in
various NGO roles in the UK, Peru and Malaysia.
Ann Fudge Schormansis an Associate Professor in the School of Social Work at
McMaster
University (Ontario, Canada). She was a practicing social work for many years, working
with people with intellectual disabilities in the Community Living and Child Welfare sec-
tors. This practice background, combined with ongoing activist work and her experiences
parenting her daughters with intellectual disabilities inuence her teaching and research. She
uses inclusive, co-researcher methodologies in her research work, along with arts-informed
methods (such as forum theatre, documentary lm-making, photography, and mapping).
Much of this research has focused on issues that co-researchers with intellectual disabilities
who have worked with her have identied as needing attention.
Marco Antonio Gavériois a social scientist, sociologist, and Ph.D. student at the
Graduate
Program in Sociology, at the Federal University of São Carlos in São Carlos, Brazil.
Researcher of the SexEnt: Body, Sexuality and Entertainment, at UFSCar. Gaverio’s studies
was nanced in part by the Coordenação de Aperfeiçoamento de Pessoal de Nível Superior–
Brasil (CAPES).
Contributors
xviii
Rasa Genieneis a PhD Candidate of the Social Work and Social Welfare Department,
Facult y of Philosophy, Vilnius University, focusing on the deinstitutionalisation of residential
care and the development of community-based services for people with mental/ intellectual
disabilities. Before, she worked for a non-governmental organisation, which
initiated piloting
and development of good practices of community service models. Currently, Rasa is work-
ing in the Ministry of Social Security and Labor of the Republic of Lithuania, where she ex-
plores and operates the issues of transition from institutional care to family and community
services for people with disabilities which has a direct link with her dissertation.
Violeta Gevorgienieneis Associate Professor in the Department of Social Work and Social
Welfare, Faculty of Philosophy, Vilnius University since 2000. She has a background of edu-
cational sciences and social work and is an expert on disability issues. In 2009, she was elected
as the member of the Executive Committee of the European Association of Schools of Social
Work and served in this position up to 2017. She has authored over 20
scientic publications
and learning materials for persons with disabilities. Her research interests also include com-
petences of social work, social work education, socio-cultural identity and migration.
Melissa Grahamis the founder and one of the key organizers for the Toronto Disability
Pride March. Melissa is a social worker and community activist involved in disability issues
throughout Ontario, including her position as Vice-President of Citizens with Disabilities
Ontario. She is also a recipient of an Ontario Volunteer Service Award for 2018. She has
previously written about disability issues in national publications such as The Monitor and Our
Times Magazine, as well as on her blog, ‘Sit Down, Fight Back’.
Nathan Grayis a member of the Voyager project, which aims to improve the educational
attainment of crown wards by encouraging young people in care to pursue their educational
aspiration. He was also involved in directing a peer mentoring video. He is a rhythm and
blues (RnB) singer. He is a co-researcher with the Partnering for Change Research
Project.
Hehopes the knowledge generated from this research on the systemic barriers faced by
homeless young people with learning, developmental or mental disabilities will reach a
wider audience and inform change in policy and practices that serve this population.
Maria Grazia Gargiulois Ph.D. in Environmental Education and Sustainable Development
and Expert in Disability Pedagogy and Social Model of Disability at the Suor Orsola
Benincasa University of Naples in Italy.
Miro Grithshas a PhD and teaches at the University of Leeds, he is active within dis-
ability rights and is a member of various local, national and international advisory boards,
including In Control, British Council and the European Network on Independent Living.
His particular interests are: the concept of Independent Living, community development and
youth participation in decision-making processes.
Anahi Guedes de Mellois a social scientist, anthropologist, and Ph.D. student at the
Graduate Program in Social Anthropology, at the Federal University of Santa Catarina
(UFSC), in Florianópolis, Brazil. She is a researcher of the Nucleus of Gender Identities and
Subjectivities, at the UFSC’s Department of Anthropology, and of the Nucleus of Disabil-
ity Studies, at the UFSC’s Department of Psychology. She is also an associate researcher at
Anis– Institute of Bioethics, in Brasília, Brazil.
Contributors
xix
Damian Haslettis a Doctoral Researcher at Durham University, UK. His research fo-
cuses on the intersection of disability rights and disability sport. Damian is a full member of
the Division of Sport, Exercise and Performance Psychology in the Psychological Society
of Ireland, and he serves on executive committee of Irish Wheelchair Association Sport.
Kevin John Headis a self-advocate who recognises the importance of educating non-
disabled people in order to work towards change. As a co-researcher with the My Life in the
City Research Project, an arts- and technology-informed qualitative study looking at of how
people labelled/with intellectual disabilities use and give meaning to their experiences of
public city space, Kevin is very involved in sharing information about the research with a va-
riety of audiences, in many dierent ways. He is particularly proud of the documentary the
co-researchers have made, and is now actively involved in the creation of the project website.
Tyler Hendersonis a co-researcher with the Partnering for Change Research Project. He is
an active member on many Hamilton (Canada) Councils. He actively engages in public
speaking and workshops for youth audiences. Having faced adversity in his own life around
issues of mental health and addiction, he is committed to supporting other youth in similar
situations and give back to the community. To fulll this commitment, he recently started
in a Bachelor of Social Work programme.
Sylette Henry-Buckmirehas a PhD in Health and Rehabilitation Sciences, Disability
Studies track from Stony Brook University. Her study is a feminist, ethnographic practice
that takes a historicised look at disability formation, and is committed to disability, mobility
and occupational justice. It creates a space to discover a deeper, more textured understanding
of how people move and occupy with physical disabilities. Sylette’s research interests include
disability studies, mobilities studies, occupational therapy, Caribbean studies, and feminist,
postcolonial, and critical race theory.
Kelly M. Homanis a doctoral candidate at the College of Information Studies at the
University of Maryland. She earned an M.L.S. from the University of Maryland in 2007 and
worked as a systems librarian and knowledge manager before returning. Her research inter-
ests include algorithmic literacy information personalization. Kelly’s thesis focuses on public
librarians’ awareness and perceptions of the role algorithms play in information access. She
has helped coordinate several conferences that bring together researchers, practitioners, and
communities around issues of common interest.
Karrissa Horan-LaRocheis a co-researcher with the Partnering for Change Research
Project. She is currently on the Social Planning Research Council Street Youth Planning
Collaborative Youth Leader’s Committee (Hamilton, Canada) whose goal is to improve
the system that supports homeless youth. She is also working with a team of individuals to
identify barriers in access to services that help youth nd employment and nd solutions to
break down those barriers. She enjoys helping people and wants to enable equal opportu-
nities for all people. Her future goal is to become a Child and Youth Worker in residential
housing.
Rainbow Huntis recognised as a trans-activist and a person labeled/with an intellectual
disability working to help bring awareness to the discrimination and isolation that trans
and disabled people face. Rainbow is an experienced co-researcher with the Re-imagining
Contributors
xx
and disabled people face. Rainbow is an experienced co-researcher with the Re-imagining
Parenting Possibilities Project presenting in conferences, academic settings and to community
organizations. Rainbow draws on personal experiences of intimacy and intimacy rights in
her work as a peer facilitator, delivering workshops across southern Ontario on sexuality and
disability. She coordinates events for isolated youths to network and learn about community
resources.
Paul T. Jaegeris Professor, Diversity & Inclusion Ocer, and Director of the Master of
Library and Information Science programme of the College of Information Studies, as well
as Co-Director of the Information Policy and Access Center at the University of Maryland.
He is the author of more than one hundred and eighty journal articles and book chapters,
along with seventeen books. Paul’s research has been funded by the Institute of Museum &
Library Services, the National Science Foundation, the American Library Association, the
Smithsonian Institute, and the Bill & Melinda Gates Foundation, among others.
Charlotte Jonesis a Postdoctoral Research Fellow at the University of Exeter’s Well-
come Centre for Cultures and Environments of Health. Her work responds to conversations
within feminist theory, queer theory and critical disability studies. She was awarded her
doctorate on intersex people’s experiences of relationships, intimacy and prejudice by the
Department of Sociological Studies, University of Sheeld in 2017. Charlotte previously
worked on sexual violence and disclosure in Higher Education settings, community activism
and advocacy for HIV pre-exposure prophylaxis, and as Research Fellow on Around the
Toilet, a project about the public toilet as a location of exclusion and belonging for queer,
trans and disabled people.
Gill Kemp’scareerhas spanned education, law and the media. She has been involved with
various charities and campaigns and is the founder of Public Toilets UK. She is also a co-
founder of the Toilet Consortium UK. While giving evidence on the eects of public toilets
closures to Government committees, Gill also worked with various ocial organisations to
produce booklets on topics such as reducing vandalism in toilets and access to facilities for
lorry drivers. She has also written handouts on health issues that aect UK lorry drivers. Gill
has several publications she was a participant in the innovative Around the Toilet project
based in Sheeld.
Rados Keravicais working for the United Nations Human Rights Team in Serbia as a
human rights project associate, where he coordinates the joint United Nations project on the
rights of persons with disabilities, autonomy, voice and participation of persons with disabil-
ities in Serbia with the focus on legal capacity regime reform, empowerment of women and
girls with disabilities and development of innovative models of employment of persons with
disabilities. From 2011–2016, he worked for Disability Rights Promotion International as a
Regional Ocer for Europe. He is a Board Member of the European Network on Indepen-
dent Living (ENIL) and the President of the ENIL Youth Network.
Brian LeBlancgrew up in New Orleans, LA and has lived in the Gulf Coast area since
then. He found his niche in the professional world as a Marketing and Public Relations
Executive. All that changed in October of 2014 when he was diagnosed with Early-Onset
Alzheimer’s Disease. He made a career by using his voice, he knew what he HAD to do
so he talked about it. He now spends his time as an International Alzheimer’s advocate,
Contributors
xxi
keynote speaker and session presenter at inter/national and local conferences, seminars and
workshops. He is also a Crisis Intervention Team Trainer for Law Enforcement.
Lars Lindbergis an activist in the Swedish disability movement and an independent con-
sultant. His work centres on human rights, disability policy and activism. Lars Lindberg is
former Deputy Director at the Ministry of Health and Social Aairs in Sweden and worked
with Disability Policy Coordination in the Government Oce.
Eleanor Lisneyis a campaigner, founder member, public speaker and director of Sisters of
Frida, a disabled women’s collective. She is an access advisor, an aspiring creative practitioner
and co-founder/ director of Culture Access CIC, which is about supporting access (includ-
ing to toilets and transport), bringing an inclusive edge intersectionally.
Fabrizio Loce-Mandeshas a PhD in social anthropology. He has carried out long-term
ethnographic eldwork related to deafness in multiple social spaces, including associations,
state institutions, and hospitals, as well as research related to cochlear implants. Currently, he
is coordinator of the project MUSAE – Musei, Uso Sociale e Accessibilità, per contrastare l’Emar-
ginazione (Museums, social use and accessibility, to contrast marginalization). The project
is co-founded by Fondazione Cassa di Risparmio di Perugia (Dec 2018–Nov 2020), under the
Insieme per un Welfare di Comunità grants.
Rex Marchihas a job which he enjoys. He will have a pension when he retires which
he is very happy about. Rex has been an active co-researcher with the My Life in the City
Research Project. The project is important to Rex because it has created opportunities for
him to connect with other people and to make new friends. He contributed to the project
by sharing his experiences, helping to create the project’s artwork, and interviewing people
during the making of the project documentary.
Alan Santinele Martinois a Ph.D. candidate in the Department of Sociology at McMaster
University. Alan’s main areas of interest include critical disability studies, gender, sexualities,
contemporary social theory, and qualitative research methods. His dissertation examines the ro-
mantic and sexual experiences of adults with intellectual disabilities in Ontario and his ‘relation-
ship to disability’ comes in the shape of being a loyal and loving brother of a young man with a
developmental disability. Alan has been working closely with community organizations and self-
advocacy groups for over a decade and is deeply committed to continuing these collaborations.
Abraham Matetais a lawyer by training and a disability rights activist by calling. He holds
among other qualications, a Bachelor of Law from the University of Zimbabwe and a Mas-
ters in International and European Human Rights from the University of Leeds. Mateta has
worked in government and the civic society and currently, he is into private practice. He
works with various organisations engaging in disability. Mateta is currently the Secretary
for the Lawyers with Disabilities Association Zimbabwe Trust, which seeks to advance the
rights of disabled lawyers and the rights of all disabled people to get access to justice.
Donna McCormickhas been a self-advocate for many years and actively involved in dis-
ability activism for people labeled intellectually disabled. She is a founding member of The
PhotoChangers, a co-researcher group facilitated by Ann Fudge Schormans. As such, Donna
has been involved in numerous presentations, exhibits and guest lectures of the group’s two
Contributors
xxii
projects: the rst being a critical engagement with public photographic images of people la-
beled/with intellectual disabilities, the second a photo project exploring issues of importance
to people labeled with intellectual disabilities, including intimate citizenship, parenting,
belonging, and employment.
Hannah McGladeholds qualications in law and human rights. She is the author of ‘Our
Greatest Challenge, Aboriginal children and Human Rights’ and recipient of the Stanner
award. In 2016, she was appointed the Senior Indigenous Fellow of the United Nations
Oce of the High Commissioner for Human Rights and the Senior Indigenous Research
Fellow at Curtin University. A member of the Noongar community, she is a prominent
Australian Indigenous human rights and social justice advocate.
Denise McKennahas used mental health services for over 25 years and has been a mental
health campaigner for most of this time. She has been involved with Mad Pride, co-founded
Mental Health Resistance Network (MHRN) and Four in Ten (an LGBT mental health
project), is part of Disabled People Against Cuts (DPAC) and has taken part in direct actions
with DPAC and MHRN. She instigated a judicial review against the DWP and has spoken
at a wide range of events. She is an artist and art historian.
Wendy Merchantis a British mother-activist, researcher and nurse whose interests include
parenting, disability and interactions with health, education and social care professionals. She
has worked on various research projects including the ‘Getting Things Changed’ project at
the Norah Fry Centre for Disability Studies at the University of Bristol and her own auto-
ethnographic research ‘Caring for disabled children in hospital: Mothers and nurses experiences’
at the University of the West of England, Bristol. Wendy’s experience of activism involves
working alongside other mothers, actively contesting the othering of our ‘disabled’ children,
whilst actively resisting those forces that seek to dene children less as than human beings.
Peter Mittlerwas a clinical psychologist and Lecturer in Developmental and Abnormal Psy-
chology, Birkbeck College, University of London (1963–1968); Founding Director Hester
Adrian Research Centre for the Study of Learning Processes in the Mentally Handicapped
University of Manchester (1968–1992); Professor of Education, Head of School of Education
and Dean of the Faculty of Education, University of Manchester (1991–1995). Currently, he
is Honorary Research Fellow Division of Nursing, Midwifery and Social Work in the Fac-
ulty of Sustainability, Education, Environment and Development, University of Manchester.
Rich Mothis a Senior Lecturer in Social Work in the School of Social Sciences, Liverpool
Hope University, UK. Before moving into social work education he worked for 15 years
in various roles in the social care sector including as a mental health social worker. He has
worked alongside activists from the survivor and disabled people’s movements as an ally in a
number of mental health, welfare and anti-austerity campaigns. He is a longstanding mem-
ber of the national steering committee of the Social Work Action Network and an active
trade unionist.
Martin Musengiis Associate Professor of Deaf, Special Needs and Inclusive Education at
Great Zimbabwe University (for the last 14 years), where he was Chairperson of the Jairos
Jiri Centre for Special Needs Education from 2015 to 2018. He is currently the Director of
Quality Assurance and Academic Planning. He taught in a special school for the deaf for 15
Contributors
xxiii
years. He is a keen supporter of disability rights and has published 22 empirical studies in the
eld of Deaf Education and Zimbabwean Sign Language and has authored 16 book chapters
and two books.
Auma Okwanyteaches Social Policy for Development at the International Institute of
Social Studies of Erasmus University Rotterdam in the Netherlands (ISS-EUR). Her teach-
ing and research interests centre on the relationship between policy, practice and theory for
children, girlhood studies, youth and their families in contexts of risk and marginalisation.
She is the Lead researcher for Tanzania on the Oak Foundation-funded two-year research
project; ‘Adolescent Perceptions on Healthy Relationships in Tanzania and Bulgaria.’ She is
also the Overall Director of the four-year Netherlands Government funded EUR-ISS proj-
ect, ‘Strengthening Education and Training capacity in Sexual and Reproductive Health and
Rights in Uganda.’
Nagase Osamuis Eminent Research Professor at the Institute of Ars Vivendi, Ritsumeikan
University, Kyoto, Japan, and is a disability studies scholar. His current activities include
chair, membership committee and Ocer of Inclusion International, of which he is a life
member, vice-chair of the CRPD Committee of Japan Disability Forum, which is a national
umbrella organization of/for person with disabilities in Japan, inaugural board member of
Japan Association for Disability Law and an editor of ‘Disability & Society‘. Nagase was one
of those who publicly appealed for an ocial apology and compensation of eugenic sterili-
sations in December 2002.
Carmela Pacelligraduated in Educational Sciences and Primary Education Sciences and is
responsible for the University Service for the activities of students with disabilities (SAAD)
at the University of Suor Orsola Benincasa in Naples Italy and a coordinator of the Naples
in The Hands Network.
Paula Petersis a disability rights activist with Disabled People Against Cuts (DPAC) and
member of Mental Health Resistance Network (MHRN) in the UK. She is also chair
of Bromley and Croydon Unite Community trade union branch and a member of the
Labour Party. Paula is a photographer who has extensively documented resistance against
the Conservative government mounted by the mental health survivor and disability rights
movement. She is also a poet and writer.
Romeo Dontae Tresean Biggz Pierre’spassion is for the performing arts and trans- activism.
He has co-presented and co-produced work in national and international contexts. He has writ-
ten and performed his own music at Pride and numerous arts and music festivals. He uses his
experiences of growing up with an intellectual disability and being a trans man to inform his
activism. Romeo brought his storytelling skills to his work as a co-researcher with the Re-imag-
ining Parenting Possibilities Project, an Ontario-wide project using a co- researcher model that ex-
plores the parenting experiences and aspirations of people labeled/with intellectual disabilities.
Paula Campos Pintois an Associate Professor at the School for Social and Political
Sciences/ University of Lisbon, and a researcher at the Center of Administration and Public
Policies and the Interdisciplinary Center on Gender Research. Since 2013 she coordinates
the Observatory on Disability and Human Rights, a platform that brings together academics,
disability organizations and decision-makers to support disability research in Portugal.
Contributors
xxiv
Member of ANED, an academic network of experts who conduct analyses of public policies
aecting persons with disabilities at EU level, and research associate with Disability Rights
Promotion International, a worldwide initiative to monitor disability rights.
Ciro Pizzois Researcher at University of Naples ‘Suor Orsola Benincasa’, where he teaches
Sociology and Social Models of Disability. He’s co-Director of the DIE – Groupe de
recherche/
Laboratoire des terrains vagues au sujet de Désaliation, Incertitude, Exclusion and Member
of the Executive Comittee of the CeRC ‘Centre for Governmentality and Disability Studies
“Robert Castel” of Naples’ – ANED Centre for Italy. He’s member of the Editorial Board of
Minority Reports and Cultural Disability Studies.
John Raewas a board member of many human and disability rights organizations, including
Co-chair of the Coalition on Human Rights for the Handicapped, which secured the rst
human rights coverage for persons with disabilities in Ontario. John is a Past President of the
Alliance for Equality of Blind Canadians, the Canadian Legal, Advocacy, Information and Re-
search Association of the Disabled and PAL Reading Service. He is currently a member of the
Council of Canadians with Disabilities National Council, Chair of its Social Policy Committee,
and a member of its Human Rights and National Accessibility and
Inclusion Act Committees.
Sarah Rennieis an accessibility and inclusion specialist, equality trainer and reformed
solicitor. Her particular areas of interest are transport and toilets. She is a steering group
member of Sisters of Frida CIC and former President of the Access Association. Sarah lives
in Birmingham with no children or dogs.
Marcia Riouxis a Distinguished Research Professor in the School of Health Policy and
Management and teaches Critical Disability Studies, Health Policy and Equity at York
University in Toronto, Canada. She is the Director and PI of Disability Rights Promotion
International, a multi-year group of projects to monitor disability rights (including employ-
ment rights, indigenous rights, socio-political rights) nationally and internationally. She has
recently developed Indicators under the CRPD and the SDGs that recognise the importance
of the input of grassroots voices in the way we measure progressive realisation. She has been
a member of the Order of Canada since 2014.
Sean Rowleyhas been a self-advocate for many years and actively involved in disability
activism. He is a member of The PhotoChangers, a self-advocate research group facilitated
by Fudge Schormans. This group’s most recent work uses photography to explore issues of
intimate citizenship – Sean brought this knowledge to his work with the Making Space for
Intimate Citizenship Project. Sean is also a co-researcher on the My Life in the City Research
Project, and was involved in lming the project’s documentary, a documentary developed by
the co-researchers with support from a lm crew.
Tafadzwa Rugohois a PhD candidate in Department of Sociology at the University of
Kwa Zulu Natal in South Africa. He has chapters in two forthcoming books ‘Disability and
media: An African perspective’ and ‘Teaching Sexual and Reproductive Health to Adoles-
cence with Disabilities’.
Joanne Sansomeholds a Masters in Social Research Methods. She is a researcher and ac-
tivist with a physical disability from
Northern Ireland. In Northern Ireland and the broader
Contributors
xxv
U.K, Joanne has worked with government and non- governmental organisations, univer-
sities, and within organisations of disabled
people to create awareness of and further the
understanding of disability rights. Joanne has signicantly shaped the concept, research and
delivery of service user and carer involvement within social work education and is an active
member of the Northern Ireland Social Care Council Participation Group and, recently,
the Disability Research on Independent Living and Learning National Advisory group of
Northern Ireland.
Marie Sépulchreis a researcher at the Department of Sociology of Uppsala University,
Sweden. Her research interests centre on citizenship, disability, activism and structural in-
equalities. Marie’s work has been published in international peer-reviewed journals such
as Alter- European Journal of Disability Research, the Scandinavian Journal of Disability
Research, Disability and Rehabilitation, and Disability and Society. She recently completed
her PhD at Uppsala University, with a dissertation entitled: This is not Citizenship: Analysing
the Claims of Disability Activists in Sweden.
Samantha Sibandahas eight of experience as a disability activist. She is the Founder of
Signs of Hope Trust, Zimbabwe, which empowers and advocates for the rights of people
with disabilities. She believes in the interdependency of society and that in our diversity, we
bring dierent solutions to development in any area. Her work promotes empowering and
self-representation of people with disabilities so that they contribute to decision making.
Samantha also coordinates an inclusive Zimbabwean online magazine, ‘Hope Magazine’.
She is currently studying special education, with the hope of contributing to the inclusion of
children with disabilities in education.
Jen Slaterworks as a Reader in Disability Studies and Education at Sheeld Hallam
University, UK. Her research focuses on issues of disability, gender and the body. She is also
interested in critical explorations of developmental discourse and issues of access/ accessibility.
Jen’s PhD research used critical disability studies perspectives to explore meanings that
we attach to ‘youth’ and ‘adulthood. From 2015–2018, she led a series of AHRC-funded
arts-based projects collectively known as Around the Toilet.
Brett Smithis a Professor at Durham University, UK. Working with organisations like
Disability Rights UK and Aspire, his research focuses on disability, sport and physical activ-
ity. Brett serves on seven journal editorial boards (e.g. Disability and Society), is Associate
Editor for two journals, and is the President of the International Society for Qualitative
Research in Sport and Exercise.
Armineh Soorenianis an independent researcher and her research interests include inclu-
sive education, disability arts and representations, disability and gender, and disability hate
crime. Her book ‘Disabled International Students in British Higher Education: Experiences
and Expectations’ was published by Sense Publishing House in 2013. Soorenian also has
published articles in several international journals and has contributed to several collected
edition books as well as various United Nations initiatives. In May 2018, Soorenian was
recruited by the Alliance for Inclusive Education to lead a project on the eectiveness of
schools’ Accessibility Plans funded by the Disability Research on Independent Living and
Learning grants programme.
Contributors
xxvi
Natalie Spagnuolois a doctoral candidate at York University, Toronto. Her SSHRC-
funded research explores medical decision-making and knowledge production, and the
role of economic factors in these processes. She is managing editor for a critical disability
studies journal and for an open-access peer-review journal that supports interdisciplinary
approaches to health from social justice perspectives. She has published numerous articles and
book chapters on disability and migration, intellectual disability, and the theory and practice
of disability research.
Mo Stewartis a former healthcare professional, a disabled veteran of the Women’s Royal
Air Force medical branch; and an independent disability studies researcher since December
2008. Her research exposed the American corporate inuence with UK social policies since
1992, the assessment model adopted by the Department for Work and Pensions (DWP) to
assess claimants of long-term sickness and disability benet as being fatally awed, and the
inuence of a former DWP Chief Medical Ocer, with future welfare reforms when funded
by the same American corporate insurance giant; who had inuenced the DWP in the long-
held plan to demolish the UK welfare state in favour of private healthcare insurance.
Amanda Strausseris a current sta member at the University of Maryland, College Park.
She is a vocal advocate for the disability community, using her own experiences within
higher education to mentor and support others who are pursuing their degrees. Her re-
search focuses on health literacy and looks to establish more eective advocacy networks
for those with visible and invisible disabilities within the American health care system.
Amanda is one of the founding members of the UMD Disability Summit; but also works
with many units across the campus to help promote programming that is both inclusive and
accessible for all.
Egle Sumskieneis Associate Professor, Head of the Social Work and Social Welfare De-
partment, Faculty of Philosophy, Vilnius University. She is a social worker, sociologist and
expert on disability, mental health and human rights issues. As an expert she was involved
in various international and national projects focusing on such areas as human rights and
disability, discrimination, mental health care, policy, social integration of people with psy-
chosocial disabilities. She is editor of one monograph and author of over 20 scientic publi-
cations covering issues of human rights, disability and mental health.
Krishna Bahadur Sunaris a youthful disability rights advocate from Dalit community of
Nepal who has a lived experienced of double tires of discrimination and exclusion. Krishna
has been advocating for disability rights and inclusion for more than a decade, associating
with dierent likeminded social organisations. He is a second generation leader of Nepali
disability rights movement, who has been initiating a critical discourse on disability from
academic perspective. Having completed a Master Degree in International Cooperation
and Development, he is also a development professional with an expertise on disability,
human rights and inclusive development. Krishna is currently the Secretary of the National
Association of the Physical Disabled-Nepal.
Kate Swaeris a humanitarian, disability rights activist, author and speaker. She is the
2018 Global Leader in the 100 Women of Inuence in Australia, and was the 2017 Austra-
lian of the year in South Australia. Kate is also the Chair, Chief Executive Ocer and one
of eight co-founders of Dementia Alliance International, a global advocacy and support
Contributors
xxvii
group for people living with dementia, having been diagnosed at the age of 49. Kate is
also a full member of the World Dementia Council, and a Board member of Alzheimers
disease International. She sits on several national and international Steering committees and
Advisory groups, including the United Nations High Level Meeting Steering Committee.
Jose Vierahas more than 15 years of experience working nationally and internationally in
the eld of human rights. As a person with a disability, he has a personal commitment to
improving the lives of persons with disabilities and advocating for their human rights. Cur-
rently, he is the World Blind Union CEO, which has an international membership with 235
organisations at the sub-national and regional levels and in over 190 countries. Also, he is
a professor in the department of International Relations at Silo 21 University in Argentina,
and the President of the Federation of the Blind of Argentina.
Dagnachew Wakeneholds a Bachelor of Law (Addis Ababa University, Ethiopia) and
MPhil, majoring in Rehabilitation and Development Studies (Stellenbosch University,
South Africa). He is currently pursuing doctoral studies at the Institute for International and
Comparative Law in Africa (University of Pretoria), focusing on violence against persons
with disabilities. He is also the Regional Director of Programmes for the Africa Disability
Alliance. Before then, he worked as Regional Coordinator for Africa at the Disability Rights
Promotion International, a global research project on establishing a holistic, participatory
system of monitoring disability rights violation. A childhood polio-survivor, Dagnachew
embraces a blend of lived experience, academic and professional rigour in disability rights.
xxviii
ACKNOWLEDGEMENTS
This product is a collective eort from all the contributors, who endured deadlines and
pushed the boundaries of their own practice. We are glad that they shared their work on
disability activism spread across continents. It is our hope that the disability activism struggle
continues until all disabled people across the world enjoy their rights just like any citizen.
We are also very much indebted to all the reviewers, who are too many to mention, for
meticulously reviewing the individual chapters in this handbook. This book is what it is
because of them.
We are also grateful to the publishers for giving us the opportunity to publish this
edited
collection. We also extend our gratitude to all the technical experts provided by the publisher,
who guided and supported us to ensure that this project came to a fullling completion.
While putting this handbook together, our families and friends were very supportive and
their unwavering encouragement gave us the energy to keep on going up to the end. We
extend our heartfelt and special thanks to them all.
PART I
Introduction – contextualising
disability activism
3
INTRODUCING DISABILITY
ACTIVISM
Maria Berghs, Tsitsi Chataika, Kudakwashe Dube and
Yahya El-Lahib
Introduction
The onslaught of neoliberalism, austerity measures and cuts, impact of climate change,
protracted conicts and ongoing refugee crisis, rise of far right and populist movements have
all negatively impacted on disability. These circumstances have created more impairment
and deaths in the global South and North. At the same time, we are witnessing the water-
ing down of many rights, legal entitlements and policies that sustained disability lives. This
includes the ability and willingness of academia, non-governmental organisations, multina-
tionals and institutions to get involved in ghting back politically, economically, culturally
and socially to ensure change. Yet, disabled people and their allies are ghting back and we
urgently need to understand how, where and what they are doing, what they feel are their
challenges and their future needs.
We are living through ‘activist’ times with diering formal and informal expressions of
what activism looks like from individual actions, artistic movements, mass protest marches,
hashtag activism (e.g. #ArabSpring, #BlackLivesMatter, #JeSuisCharlie, #MeToo move-
ment, #ThisFlag), consumer activism, climate activism, peace activism; to ensure collec-
tive institutional, legislative or political change (Shirky, 2008). These campaigns are viewed
as more inclusive, democratic, ‘liquid’ and horizontal in nature, in that anyone can join
(Tufecki, 2017; Gerbuado, 2018). With the impact of social media, boundaries between
public and private life collapse. The personal now can become political and part of public
discourses, as well as imagery, and experienced as individually empowering. Public spaces
become ‘occupied’ and appropriated for direct action, political slogans of resistance and mass
protests (Gerbuado, 2018). Most activists now use technology, such as mobile phones and the
Internet, as well as email, photographs, videos, podcasts, crowdfunding and blogs, making it
accessible to a wider global audience.
Much of the physical and emotional labour of activism and advocacy, in terms of writing
letters or calling, recruiting new members, ensuring funding, thinking of campaign slogans
and planning innovative actions and tactics for attention, has thus profoundly altered with
this new media landscape (Shirky, 2008; Tufecki, 2017). At the same time, there have been
criticisms of this ‘new activism’, with some despairingly calling it mainly ‘online’, ‘cyber’
or ‘digital’ activism, ‘clicktivism’, or ‘slacktivism’ (Karpf, 2010; McCaughey & Ayers, 2013).
Berghs, Chataika, K. Dube & El-Lahib
4
While the new activism seems to t ideas of social movements in terms of collective message,
vision and shared ideas for change, often popular appeal, quantitative impact or even on-
line vitality of a campaign, has not always translated to eecting real change, especially in
neoliberal times (Tufecki, 2017).
Despite mass appeals of transnational movements, software platforms (i.e. Facebook,
Twitter, WhatsApp, Telegram, Instagram) and international non-prot organisations
focusing on whistling blowing (i.e. WikiLeaks), this has led to very little structural political
change, particularly in dictatorial countries (Tarrrow, 2005; Gerbuado, 2018). Moreover,
overt individual direct political dissent in undemocratic countries, activism that threatens
international economic powers or whistle-blowing globally, is fraught with dangers and
often ensures that certain types of (hack)activism have to go underground (Lindgren &
Lundström, 2011). A kind of hierarchy emerges in how the risks and rewards of legal and
illegal, as well as overt and covert activism are understood. Increasingly, we are also seeing
the rise of not only more politically conservative types of activism; but also openly violent,
fascist, racist, homophobic and populist activism alongside neoliberal ‘extractivist’ activism
for private economic gain or terror and conict, which goes unregulated and unpunished.
Much of the new activism, especially online, seems to be done from positions of technologi-
cal comfort, digital, political and economic algorithmic power as well as language privilege,
which is rarely acknowledged. Tufecki (2017, p. xi) argues that we are witnessing a shift
in how social movements ‘operate’ and how they are opposed due to ‘technological aor-
dances’. These ‘technological aordances’ also come with real technological, physical and
emotive risks, in terms of loss of privacy and need of new technological skillsets to protect
oneself in the real and virtual world.
Criticisms have also been directed at much of the online policing in terms of language
and terminology that is being used, noting that this is undemocratic, encourages censure and
is counter to freedom of expression. It also entails that activism is not setting agendas; but
one of disagreement, dissent and resistance as well as encouraging ‘self-censure’ for personal
preservation in public spaces and the creation of ‘echo-chambers’. In the United States of
America (USA), critics argue that cyber activism through the use of online marketing and
algorithms for the political right, has contributed to division, ‘shock-politics’ and ‘post-
truth’ acceptance (see Klein, 2017). Concerns have been raised about the proliferation of
‘big data’ and how inequalities have gradually become automated in institutions. Conversely,
they have real consequences for poor people in terms of employment, insurance, mortgages,
justice and healthcare (O’Neil, 2017; Eubanks, 2018).
The trajectories of new activism have also been criticised as being neo-colonial, racist and
mostly from North to South with very little cultural sensitivity and local expertise, as exem-
plied by the Kony 2012 video campaign cited in Cole (2012). Furthermore, questions have
been raised about links to consumerism, identity politics and lack of transparency about who
really benets from the work of activism and branding of oneself as a particular type of ‘ac-
tivist’ (Chataika et al., 2015). It almost seems as if it has become ‘trendy’ to proclaim oneself
as an ‘activist’ in terms of neoliberal identity management, possible access to resources and
moral branding or virtue signalling. Activism has become another commodity to buy into,
in terms of neoliberalism, thus blurring the boundaries between consumerism, humanitari-
anism and resistance (Mukherjee & Banet-Weiser, 2012; De Waal, 2015).
What is missing from many of the above criticisms and analysis of new forms and impetus
of activism is ‘disability’ (Soldatic & Johnson, 2019). This is a grave concern, particularly
when we are living in what some have dened as ‘Crip Times’ or neoliberal austerity that
Introducing disability activism
5
particularly aects and creates disability (McRuer, 2018). Accordingly, this makes manifes-
tos for disability justice and activism urgent (Ellis et al., 2018). In the newer forms of dis-
ability activism, the focus on the everyday and people behind the hashtags or understanding
the individual and collective motivations for participating in particular protests has been
missing. While everyone is involved in new forms of activism – from local to global (this is
inclusive of age, ethnicity, gender, socio-economic class and so on), disability theory, people
with impairments, illness and chronic conditions, as well as dierent forms of new activisms,
have been neglected. This could be because disability activism is often misunderstood or
relegated to those disability rights activists with active social media proles, academic ca-
reers, international contacts or involvement in Non-Governmental Organisations (NGOs)
(Soldatic& Johnson, 2019). More so, the work of those who write profusely in the English
language is easily accessed by large human rights organisations in the global North and
South (Chataika et al., 2015).
Disability activism is also incorrectly viewed as only about disability ‘rights’ or with
inadequate cross-cultural or interdisciplinary reach. It is often erroneously seen as something
‘special’ or ‘dierent’, with limited political or human rights impact that only those with
a ‘disability’ identity can do. However, there is often no nuanced understanding of what
‘disability issues’ involve. We have nonetheless seen a surge of disability advocacy, activism,
campaigning and research on activism, from confrontational protests and symbolic direct
action in Bolivia for pensions (Brégain, 2016; Vásquez Encalada, 2019), a mother advocating
for justice for her disabled child in the United Kingdom (UK) (Ryan, 2017), the Sins Invalid1
performance project on disability and sexuality, the African Network on Evidence to Action
on Disability (AfriNEAD) (Mji et al., 2011), to the start of a disability movement and advo-
cacy on disability issues in China (Zhang, 2017) and its intersectionality to other movements
like #MeToo (Lin & Yang, 2019). All these dierent forms of activism have been infused with
a renewed sense of global urgency due to the political, social, cultural and economic times in
which we live. They were also inuenced by a shared history, theories and collective social
movement, which is important to understand. We do not set any boundaries around the lan-
guage and theories being used in this book, but we rather give a brief introductory overview.
Understanding models, language and movements
Over 15% of the world’s population has a form of impairment, and this has come to the
world’s attention due to the disability movement (WHO & World Bank, 2011). In order
to understand how the disability movement became a collective global movement, there is
a need to comprehend the importance of models and theories of disability to ensure a col-
lective consciousness. It may seem as if the disability rights movement began in the 1960s
with the start of the civil rights, women’s rights and other diering social movements in the
UK and USA, but its origins lie earlier (Sabatello & Schulze, 2013). If we think models or
theories inuence language and eect social change, we note that the earliest models of dis-
ability were charity models, which is reected in policy and legislation and early formation
of organisations and institutions around specic forms of impairments.
A charity model of disability views disability as something to be ‘pitied’ and a disabled person
as in need of charitable aid. Thus, it looks at disabled people as individuals who are unable to
do things for themselves, who need to be protected and decisions made on their behalf (Cha-
taika, 2019). Hence, we can locate this in advocacy, for example, in the 1600s, in the early
laws for the poor, inrm, aging or even aid for soldiers who gain physical and mental injuries
Berghs, Chataika, K. Dube & El-Lahib
6
through battle, as well as creation of the rst ‘mad’ houses and charities in the 1800s. The
charity model of disability is closely tied to a medical model understanding of disability, which
views disability as a problem or biological pathology that can be medically cured, xed by
medical technology or
rehabilitated. Thus, the medical model focuses on the impairment –
on what is ‘wrong’ with the person (Oliver & Barnes, 2012). It looks at the ways in which
the person deviates from the norm, and tries to narrow that gap. The assumption here is that
‘normal’ is automatically desirable and to be aspired to. The ‘problem’ lies with the individ-
ual, depending on what they can or cannot do (WHO & World Bank, 2011).
Early global disability advocacy and movements were linked to colonialism and
imperialism; for example, the creation of impairment-specic organisations and institutions,
such as for ‘blind’ people (Phillips, 2009; Rembis et al., 2018). Yet, these organisations were
mainly run by and controlled by non-disabled people in the global North, which were closely
linked to Judeo-Christian understandings of disability. The British and Foreign Society for
Improving Embossed Literature for the Blind, a forerunner of the UK’s Royal National In-
stitute for Blind People, was founded by a doctor who had issues with his eyesight; but this
remained exceptional. The great depression after the First World War meant the formation
of The League of the Physically Handicapped in the USA, which advocated for welfare issues
(Longmore & Goldberger, 2000). The two world wars also entailed the start of specialised
rehabilitative services, inclusive of sport for service men and women who became disabled
during conict (Albrecht, 1992; Brittain & Beacom, 2018).
In contrast, the social model of disability developed from the experiences of disabled people
and their activism against the charity and medical models of disability, as well as the control
that these professionals exerted over their lives. Thus, in the 1970s, a group called the Union
of Physically Impaired Against Segregation (UPIAS) campaigned for the rights of people with
impairments to participate fully in society, to live independently, to undertake productive work
and to have full control over their lives. The social model of disability suggests that a person is
disabled by society’s inabilities to adapt to disabled people’s needs. For example, the wheelchair
is not the problem, the stairs are. UPIAS made a dierence between physical, sensory or cogni-
tive impairment and the experience of oppression created by barriers, discriminatory attitudes
and exclusion, which they called disablement. According to UPIAS (1976, p. 14):
It is society which disables physically impaired people. Disability is something imposed
on top of our impairments by the way we are unnecessarily isolated and excluded from
full participation in society.
The social model removes the focus and ‘blame’ from the disabled person to society in
general.
Since then, the social model has encompassed not just people with physical impairments, but
also people with sensory impairments, intellectual and mental health conditions. This idea
was foundational to understanding disablement and disability identity as imposed on top of
impairment, meaning that there was nothing ‘wrong’ with a person who had impairment(s)
but instead that society had to be xed, cured or rehabilitated. This led to a more positive af-
rmation of a disability identity, as well as a very clear focus on removing barriers in society
to ensure rights, welfare entitlements and citizenship (Shakespeare, 2017). The social model
lay at the foundation of the independent living movement and anti-discrimination legisla-
tion in the UK, US, Europe and Canada (Barnes, 1991; Vanhala, 2010). What was mainly a
grassroots movement became a global movement advocating the ‘Nothing about us, without
us’ mantra and disability rights (Charlton, 1998).2
Introducing disability activism
7
The social model also came under criticism in terms of being mainly advocated by white
western men with physical impairments. Theoretically, it also came under criticism with
disabled people arguing that it ignored signicant experiences linked to impairment, such as
pain, presupposed that disability identity should and could be ascribed to, and everyone that
had an impairment was ‘oppressed’ (Dyson & Berghs, 2019). The concept of lived experi-
ence was also changing, resulting in more distinct but also fragmented identity politics and
people who no longer identied as ‘disabled’ or ‘person with a disability’ but applied the
social model to impairment (Woods, 2017). Other aspects of identity, as well as medical de-
nitions, may carry more cogency for people and change along the life-course as impairment
changes, yet there has been limited understanding of this.
Hybrids of the social model have also formed, such as more social-relational models (Thomas,
2004), also found in the Nordic countries focusing on normalising the environment for dis-
abled people, embodied models (Shakespeare, 2004; Wiseman, 2014) or/and minority models
found in North America, where disability is viewed as part of a minority culture, which
has rights and whose cultures need protection (Sabatello & Schulze, 2013). Others have left
the social model behind, arguing for a more critical disability studies perspective and noting that
disability and impairment are social constructions (Goodley, 2014).
Foundational to the disability rights movement was also a human rights model of disability
and the links that were institutionally made between disability and human development.
The year 1975 marked the United Nations (UN) Declaration on the Rights of Disabled Per-
sons. The 1980s marked global advocacy on disability, with 1981 declared the International
Year of Disabled Persons and 1983, the beginning of the UN Decade of Disabled Persons.
Such initiatives were tied to understandings of disability, poverty and development as cor-
related in terms of a global challenge (Ingstad & Eide, 2011). The ‘ght’ against poverty
also became connected with ideas of research co-production and inclusion of people with
disabilities in poverty reduction work (Yeo & Moore, 2003).
Poverty is multi-dimensional as a person is more likely to be disabled if poor; disability
is connected to chronic poverty, lower employment rates, lower educational attainment
and higher medical expenses, especially in the global South (Charlton, 1998; Mitra et al.,
2013; Mitra et al., 2017). This was conceptualised as the ‘poverty-disability and chronic
poverty- disability cycle’ (Yeo, 2001; Yeo & Moore, 2003). However, the latest evidence
indicates that disabled people also ‘face various forms of barriers and intersecting in-
equalities, which can result in multi-dimensional poverty, exclusion and marginalisation’
(Mitra etal., 2013; Chataika, 2019, p. 4). Thus, despite all development work taking place,
particularly in the global South, there still exists a disability gap (Groce, 2018; Chataika,
2019) as disabled people are being left behind irrespective of their need of both disability-
specic and inclusive policies (Berghs et al., 2016; Groce, 2018). The disability gap can
be explained by the way in which poverty is more of a multi-dimensional matrix than
a cycle. There are situational factors linked to impairment that become ‘embodied and
potentially (but not necessarily) linked to disability discrimination’ (Berghs et al., 2016,
p.43) in that, chronic deprivation is correlated to entrenched inequalities aecting dis-
abled people (Berghs et al., 2016).
While national and international legislation changes have been made and litiga-
tion engaged in, what has been critical is the Convention on the Rights of Persons with
Disabilities (CRPD) (United Nations, 2006). It gives expression to how poverty and
development are linked to disability, which can however be addressed by changing at-
titudes, removing barriers and assurances of protection of rights in every aspect of life.
Berghs, Chataika, K. Dube & El-Lahib
8
In the CRPD, disability is also described as an ‘evolving concept’ and dened in terms of
person rst language, such as persons with disabilities. The CRPD states:
Disability results from the interaction between persons with impairments and
attitudinal
and environmental barriers that hinders their full and eective participation in society
on an equal basis with others.
(United Nations, 2006)
While the CRPD has been hugely inuential, there have also been criticisms in the sense
that real citizenship has not been achieved for many disabled people in the global South
(Chataika et al., 2015; Watermeyer et al., 2018). In response, people have argued that while
rights are important, so is understanding the way in which negative attitudes inuence barri-
ers. There is a dierence between ableism and disablism in the sense that we live in a world that
is created and ascribes positive meanings to an able-body (Campbell, 2009; Goodley, 2014).
This is dierent from disablism, where negative meanings are associated with disability.
The history of disability and activism has also been viewed mainly from the global North
and in response, newer models have started to evolve: Latin, African and Asian. For instance,
indigenous models inspired by southern African theory and ethics, such as an Ubuntu model of
disability (Chataika et al., 2015). Others have argued for a cultural model of disability, arguing for
a disABILITY MUNDUS or more transnational materialist view on disability (Devlieger
et al., 2016). Despite this, a unifying model from the global South has not evolved yet and
calls for decolonising disability and development studies remain cogent (Kolářová, 2016).
In response to the rolling back of much of the welfare and entitlements that the disability
community gained in the global North and South, there have also been calls for stronger
models to protect rights such as the social model of human rights (Berghs et al., 2017; 2019) or
a more radical model of disability (Berghs, 2015), which would focus on structural causes of
disablement and political changes for disability justice. Others view a new impetus in the
emancipatory models of disability (Barnes, 2014). However, if we look at the work of activism, it
is a message of resistance and hope that is mainly being carried out by disabled people rather
than the charities or NGOs (Wong, 2018). Williams-Findlay (2018) argues that any research
done about disabled people’s lives has to focus on resistance, rights and reclamation. In this
respect, we see a more activist or active model of disability (Levitt, 2017) that could be emerging
in terms of newer theories and models of disability resistance, hope and reclamation.
It is against the above background that we present the book outline. The handbook is
divided into the ten broad sections, navigating into conceptual, practice, personal experi-
ences and cross-cutting within the disability activism agenda. This introductory chapter
provides the background and the book overview. The virtual roundtable captures disability
activism dynamics from emerging disability activists from the global South.
Chapters1 to
34 are distinctive chapters, which when read together, inform the disability activism journey
travelled so far and future directions. Finally, Chapter 35 brings the handbook to a conclu-
sion by drawing lessons, best practices, challenges and opportunities for future disability
activism. The handbook is therefore divided into ten parts that we introduce in turn.
Part I: Introduction – contextualising disability activism
This book starts with two introductory chapters. The rst introduction by Maria Berghs,
Tsitsi Chataika, Kudakwashe Dube and Yahya El-Lahib provides the background of the book
and how it is structured. The second introductory chapter is a virtual roundtable with ac-
tivists from the global South, which sets the scene of the book. Tsitsi Chataika coordinated
Introducing disability activism
9
the virtual roundtable and gave a platform, not to the ‘usual suspects’ in disability studies,
famous academics or well-known disability activists, who are acknowledged throughout this
book in terms of their foundational work. She deliberately invited emerging disability activ-
ists, Abraham Mateta, Samantha Sibanda (Zimbabwe) and Krishna Bahadur Sunar (Nepal),
to the virtual roundtable so that their voices can be heard at a global level. The focus shifts
to those people working on the front lines of everyday activist practices. The purpose of
the virtual roundtable was to understand what the ‘everyday’ consists of, in terms of new
disability activism; as well as the challenges that activists now face within their contexts. It
is through engaging with this chapter that readers establish what the activists think works
best - confrontational or non-confrontational activism. Thinking about decolonial practices
and engaging in dialogical activism means giving the oor to emerging disability activists
from the global South so that the world can ‘listen and learn’ from them.
Part II: Neoliberalism and austerity in the global North
Part II sets the tone of the times and justies why activism has become so important. It is
about the problems of the disability vanguard having to change with the challenges of an
increasingly neoliberal world (Oliver & Barnes, 2012; Shakespeare, 2013; Goodley, 2014;
McRuer, 2018). In many ways, this section is about the limitations of humanitarianism
(Gill & Schlund-Vials, 2016) and inclusion when the laws begin to change around welfare
and entitlements to health and social care, education, employment, housing and leisure. We
move to the global North where there are two interlinked issues that disability activism is
now ghting: 1) neoliberal economic policies and 2) the impact of austerity in rolling back
many of the rights and entitlements that people have fought so hard for.
We thought it was important to begin with Mo Stewart’s Chapter 1, where she discusses
what the impact of neoliberalism and linked welfare reform has been in terms of realities of
disabled people’s lives. She begins by explaining what is at stake in the move of liberalisa-
tion of services and institutions in the United Kingdom (UK), including the loss of dignity,
human rights and people’s lives. Understanding the impact of neoliberalism entails a close
reading of transnational disability politics and where to situate newer and younger members
who will take over the disability movement. Hence the question: Is the disability movement
equipped to deal with these future challenges?
In Chapter 2, Miro Griths explains that the vanguard does not always include younger
members in the UK’s Disabled People’s Movement (DPM) and that they might be politically
more neoliberal than past generations. He found that the social model was acting as a bar-
rier towards young people’s involvement, in that it was functioning as ideology, instead of
democratic tool. He also examines how the philosophical foundations of DPM are changing
which means both challenges and opportunities in term of ‘futurology’.
Joanne Sansome’s Chapter 3 turns to what she thinks are the greatest successes of the
disability movement in the UK, in terms of legislative changes, links with global movement
and also the harnessing of social media. She gives several examples of successful campaigns
that have brought people together around protests against austerity and welfare cuts. Yet,
ultimately, she wonders if trans-disability solidarity for activism is possible without new
paradigms focusing on employment and changed political structure in the UK and USA.
She ascribes to human rights models, but notes that disability has become a reactive political
movement instead of one that is proactively activist in nature.
In Chapter 4, Liz Crow expresses how disabled people have been using art to re-
sist, protest and ensure solidarity and how disabled people have become forgotten
Berghs, Chataika, K. Dube & El-Lahib
10
‘gures’ in austerity. She writes and illustrates Figures, which was a mass sculptural pro-
test on the banks of the river Thames, in front of the House of Parliament, to protest
against the human costs of austerity.
Last in Part II is Chapter 5, where John Rae notes how the hopes and promises of
technology for disabled people have not held true, in terms of employment and greater
political and social involvement in daily life. Despite all the promises and opportunities
of technology making things possible, it is now bound with neoliberal norms and values,
and can pose as threat. John explains how technology is linked to unemployment and how
important unions and legislation are in terms of activism and rights.
Part III: Rights, embodied resistance and disability activism
Part III examines embodied activism in touching upon some of the intimate complexities
that are linked to intersectional identities. In diering ways, new coalitions have been formed
around ensuring ‘embodied citizenship’ in making the private and personal, now public so
that rights can be accessed (Russell, 2011; Wiseman, 2014) or protected in sex-tracking
(Sherry, 2019). While there are risks and rewards in making the personal so public, Alan San-
tinele Martino and Margaret Campbell argue in Chapter 6 that this is necessary by giving an
overview of ‘intimate citizenship’ and activist work to ensure sexual rights. They suggest that
by guaranteeing a better intersectional understanding of the experiences of people with dis-
abilities regarding sexuality, questions of sexual identities and practices can be highlighted,
thus, dismantling barriers to sexual expression that disabled people face.
Embodiment is also a concern for Fabrizio Loce-Mandes, who through his eldwork in
Italy, friendship and shared artistic endeavours illustrates how anthropologists also embody
activist practices as ally in Chapter 7. Through visual materials and performances used by
people in the D/deaf social movement, he and Marco analyse the ways in which the expe-
rience of the body and the notion of ‘health’ are understood, constructed and continuously
negotiated in D/deaf cultural repertoires. He touches on how and why the personal becomes
public in that, notions of ‘cure’ and a medical model of deafness have to be negotiated,
resisted or accepted.
More and more, diverse activist identities become negotiated around medical or
psychiatric resistance and the ‘disability’ identity weakens as embodied resistance becomes
more specied as correlated to specic type of impairment, psychiatric survivor experience,
cultural or minority identity armation and identity politics in general. It is people with
‘lived experience’ that are at the forefront of such movements and it is this lived experience
that should be armed as expertise (McWade et al., 2015). We have seen this in terms of
the ‘neurodiversity’ movement (Ortega, 2009) that argues for a neurodiverse identity and
‘neurodiverse politics’ (Runswick-Cole, 2014). The work of activist-scholars who are open
about their identities and their moral positioning in debates around language, identity and
research practices has been foundational (see Milton, 2017). There has also been a similar
movement in ‘mad studies’ (LeFrançois et al., 2013), which builds on mental health ‘survivor
research’ in reclaiming experiences and language from professional control (Faulkner, 2017).
Mad-studies, while seemingly broad, has also drawn lines around inclusion and exclusion
within the movement, in terms of only insiders having access (Beresford & Russo, 2016),
noting issues of colonisation from sanism (Russo & Beresford, 2015). There are strengths
and pitfalls in such a stance. For example, in terms of ‘neurodiverse’ politics and the ‘us and
them’ outlook in neoliberal times (Runswick-Cole, 2014), where identity and control are
important, so is wider political and social support. McWade et al. (2015) argue that bridges
Introducing disability activism
11
between movements in terms of arming and creation of impairment; for example, in terms
of psycho-emotional disablism and creation of mental distress (see Graby, 2015), need to be
made. Overall the (bio)medical model, linked to various conceptions of cure, has become
increasingly diuse and now seeped into all facets of life, including welfare reform entailing
embodied activist resistance, also becomes a mental resistance.
In Chapter 8, Denise McKenna, Paula Peters and Rich Moth give an account of the
emerging mental health survivor-led social movement against ‘psychocompulsion’ to the
‘work-cure’. They elucidate welfare ‘reforms’ and shifts in mental health policy and practice
in the UK. They also describe activists’ collective responses and interventions to challenge
these policy agendas, noting developing alliances and strategies of resistance. Their focus is
on how they can work together to ensure active policy change through direct action, pro-
test and formation of new participatory community, inclusive of allies. The armation of
identity, creation of new networks and movements is critical to activism; so is ensuring that
activism is not controlled or co-opted by elites in terms of ensuring participatory approaches.
This has led to the creation of, for example, the Participatory Autism Research Collective3,
which is trying to relinquish control and power of the research process to communities of
people involved. In such stances, we see a more active model of disability emerging that fo-
cuses on the ‘actions’ of disabled people (Levitt, 2017); but can we call it a model of disability
if that identity is not armed? Are these active models of impairment armation or counter
armations of a biomedical model? That is why we wanted to end Part III with Chapter 9,
where Tafadzwa Rugoho in Zimbabwe reminds us of how powerful the armative model
of disability (Swain & French, 2000) is when one acquires impairment and becomes disabled.
While he notes medical and charitable models of disability, he explains how a rehabilitative
model is found within armation of disability and why he uses the disability identity as em-
bodied ammunition in being able to advocate for himself. The chapter reminds us that for all
the work on identity politics, it is the disability rights frameworks and legislation that people
can fall back on to advocate for themselves and ensure their rights.
Part IV: Belonging, identity and values: diverse coalitions for rights
In Part IV, we examine the needed expansions of the disability rights frameworks and what
the work of activism looks like when rights are missing in terms of self-advocacy. We begin
with Liz Crow and Wendy Merchant in Chapter 10, who write about their experiences
of motherhood as disabled women with disabled children. One found her way to activism
through advocating for her child; the other found the onset of impairment in her child
disrupted and changed her activism. In their chapter, they note the relationship between ac-
tivism and impairment and share what they have learnt about ‘holding’ activism. They note
that their moral authority is linked to motherhood and how impairment constantly calls that
authority, their roles as mothers and even activism for their children, into question.
In Chapter 11, Kate Swaer, Brian LeBlanc and Peter Mittler share their personal
experiences of dementia and why a large part of their activism revolves around combating
the questioning of the dementia diagnosis. In many ways, they are using a human rights
model to combat charity and pity models linked to dementia, as well as ghting against ideas
of segregation and enforced helplessness. They share their global advocacy and activism; how
they think that a disability framework and particularly the CRPD (United Nations, 2006)
is needed by people with dementia to progress beyond what is currently poor care, poor
diagnosis rates and the continued medicalisation of dementia. They advocate for an under-
standing of dementia in terms of a disAbility.
Berghs, Chataika, K. Dube & El-Lahib
12
In Chapter 12, we are presented with how a disability legislative framework is also
needed for claims of reparations against a state history of eugenics (Bashford & Levine, 2010;
Steele, 2016). Disability histories, gender, ethnicity, impairment and intersectionality to vio-
lence are examined through the voices of male and female survivors of forced sterilisations of
Japan’s Eugenics Protection Law 1948–1996 by Nagase Osamu. He notes how survivors and
their families are speaking out against state-sanctioned medical violence through the courts,
and how they found a new legislative process to demand reparations. After twenty years, the
Japanese state is nally compensating people who were forcibly sterilised because of learning
disabilities, mental health and genetic conditions. Through survivors’ accounts, we note how
violence against disability is often linked to incarceration and structural violence in society,
in how disability is viewed as dishuman (see also Goodley& Runswick-Cole, 2016; Steele,
2018). Through families of survivors, we are also introduced to how disablement aects
families and violence is intergenerational and acts as an environmental contagion, which
reparations seeks to heal. Such an understanding of rights and advocacy reveals how disabil-
ity is intertwined with the social and environmental.
In Chapter 13, Khairani Barokka extends our understanding of disability through Indigenous
Species and artistic description of how climate change is linked to histories of neoliberal violence
and colonialism that disables. The chapter illustrates how disablement is ongoing in killing eco-
systems in the global South and creating more violence in both the human and non-human.
Part V: Reclaiming social positions, places and spaces
Part V is about how activism for social positions, places and spaces in society are ‘mobilised’
by disability, challenging societal norms and arguing for more encompassing ideas of
citizenship. Throughout this section, we note how disability challenges ideas of place and
space in terms of mobility and occupation (Block et al., 2015). Ch apter 14 by Damian
Haslett and Brett Smith is on disability sport as a context for disability activism. In particu-
lar, they discuss the potential of elite Paralympic sport to understand new forms of disability
activism and dierences to the disability movement.
In Chapter 15, Ciro Pizzo, Carmela Pacelli and Maria Grazia Gargiulo explain how
a university got involved in ensuring accessibility of museums, art and cultural heritage
through their exploration of the ‘Naples in the Hands’ network. They examine how legis-
lation becomes linked to universal design but also complexities in how total accessibility for
everyone is not possible.
Concerns with accessibility drive the ‘Around the Toilet’ project in Chapter 16 by
Charlotte Jones, Jen Slater, Sam Cleasby, Gill Kemp, Eleanor Lisney and Sarah Rennie.
Reecting on the contemporary context of toilet activism and issues of accessibility in the
UK, they situate the toilet within a wider disability justice movement which speaks to issues
of austerity, categorisation, in/visibility, and both social and physical marginalisation.
In Chapter 17, we are introduced to the idea of ‘mobility’ and how that continues to
be shaped in the Caribbean nation of Trinidad and Tobago in a history of colonialism and
post-colonial neoliberalism. Sylette Henry-Buckmire introduces the idea of ‘mobility- as-
occupation’ and activists who use a variety of (non)confrontation types of activism.
Part VI: Social media, support and activism
Part VI focuses on social media and what kind of role the ‘new medias’ are playing in
disability politics and activism. In times of political turmoil, social media has meant the
Introducing disability activism
13
creation of online communities where disability activism takes place (Trevisan, 2018). In
Chapter 18, Nqobani Dube argues that the use of social media in the global South has been
neglected and marginalised by research examining the experiences of disability activists
in the global North and priorities of neoliberalism. He interviewed disability activists in
Zimbabwe and South Africa to establish their experiences of online activism. He makes
connections to understanding online disability activism in terms of a social movement,
but notes limitations of such activism. He also touches on activism in times of political
repression.
Chapter 19 moves to Brazil, where Marco Antonio Gavério, Anahi Guedes de Mello
and Pamela Block give a virtual ethnography of a cyber-activist campaign linked to the In-
ternational Day of Disabled People, celebrated on the 3rd of December. They describe how
the activists collectively met on Facebook and started to ght ableism through the hashtag
#ÉCapacitismoQuando (#It’sAbleismWhen). In their chapter, they note the importance of
timing of campaigns, embodied history of political repression, which may prevent older
activists from involvement, and context of digital activism that ensures a new generation
gains a platform.
Chapter 20 illuminates how disability history and disablement is embodied and linked
to past and present political movements in how journalists, lawyers and academics use social
media. Hannah McGlade examines how disabled indigenous people are caught up in the
prison industrial complex in Western Australia and explains connections to the Black Lives
Matter movement in the USA. She highlights how the neglected experiences of Indigenous
prisoners (women, men, children) are found online in family protests, news stories, legal
documents, academic websites and reports to demonstrate that racism is not just institution-
alised, but also part of the social fabric of creation of more disablement; making
human-rights
based reforms imperative.
In Chapter 21, Anna Chowaniec-Rylke examines how, despite criticisms about lack
of digital privacy, Facebook is an important element of health movement activism, es-
pecially for parents of children with a rare genetic condition in Poland. She notes how
the Internet is a means of advocacy, for not only the value of their children and ensuring
they are part of family life, but also in terms of dealing with bureaucracy to secure their
human rights.
Part VII: Campus activism in higher education
In Part VII, we move towards understanding campus activism in higher education and what
the academy includes, excludes and avoids (see Bolt & Penketh, 2017), as well as how resis-
tance is politically constructed in the face of academic ableism (Wolbring, 2008; Dolmage,
2017). Chapter 22 illustrates how the ableist infrastructure of post-secondary education in
the USA is not genuinely inclusive of disability as a full part of the university community,
focusing instead on bureaucratic, medical or teaching ‘compliance’ to the Americans with
Disabilities Act. Stephanie Cork, Beth Douthirt-Cohen, Kelly M. Homan, Paul T. Jaeger
and Amanda Strausser illustrate how a university can actively include disability culture, ac-
tivism and advocacy as foundational to its work. They note how in the USA, popular culture
has become disablist and disinformed (Cork et al., 2017), including on campuses, and ask us
to become not allies but accomplices, which is a more radical political stance. In the USA,
disability is viewed as part of a greater diversity, in line with a minority model of disability,
and the authors argue that disability policies and practices in higher education should not be
‘random’, but part of politics of inclusion.
Berghs, Chataika, K. Dube & El-Lahib
14
In Chapter 23, Armineh Soorenian illustrates how intersectionality and diversity in
impairment is not reected in academia. She shares a moving account of her trajectory to
PhD as a disabled woman and the violence of the academy in disableism, sexism and racism,
as well as her resistance to this through her work. Soorenian was unemployed for several
years after her PhD, even though publishing, attending conferences and teaching at the high-
est levels in the academy. She describes considerable personal and academic ‘unpaid labour’
outside the academy and how there were never any ‘reasonable adjustments’ made for her
(Inckle, 2018).
Chapter 24 examines how the creation of cultures of inclusion through greater
sensitisation should not just focus on nondisabled people, but also on disabled people. Pragya
Deora gives examples from a campus in India, noting how intersectionality needs to be
mainstreamed in student activism around disability.
Chapter 25 gives an example of what undergraduate activism looks like on campus in
the USA. Erin Davenport describes how an art installation project was started with her non-
disabled friend and ally, focusing on experiences of disabled students using elevators. It illus-
trates how resistance begins with the feeling of indignation at an injustice and then protest
to educate, re-tell and ensure change. Davenport also examines archival material to reclaim a
kinship and history with other disabled students who faced discrimination and oppression.
Part VIII: Inclusive pedagogies, evidence and activist practices
Part VIII focuses on the increasing correlations between inclusive pedagogies, evidence and
activist practices, especially in terms of greater need to illustrate qualitative and quantitative
impact in terms of social change. We turn to how academics, higher education and activism
are working together against ableism and disablism to ensure this change. In Chapter 26,
Martin Musengi shares his ‘DeafCrit’ activism as an academic against ‘audism’ in higher
education. He explains how he became an academic activist in ensuring Zimbabwean Sign
Language was recognised as an ocial language in Zimbabwean schools and discusses issues
such as reverse inclusion. In many ways, this draws on DisCrit or an intersectional frame-
work, together with disability studies and critical race theory, in examining connections
between disability, education and ethnicity to explain life trajectories of marginalisation,
segregation and incarceration (Ervelles, 2011; Annamma et al., 2013; Annamma, 2016).
As illustrated in Chapter 10, one of the most marginalised and segregated groups that
have been disproportionately globally aected by cuts to services and austerity are people
with learning disabilities (Bates et al., 2017; Carpenter, 2018; Power & Bartlett, 2018). As a
group they have been hit in all aspects of their lives, from health, education, employment,
welfare, reproduction, and justice to incarceration. For example, in the UK, a condential
inquiry found that people with learning disabilities or diculties face multiple forms of
discrimination, while men died on average thirteen years earlier than the general popula-
tion; and for women, it was twenty years (Heslop et al., 2014). This makes Chapter 27 so
critical, as Ann Fudge Schormans, Heather Allan, Donavon O’Neil Allen, Christine Aus-
tin, Kareem Elbard, Kevin John Head, Tyler Henderson, Karrissa Horan-LaRoche, Rain-
bow Hunt,
Nathan Gray, Rex Marchi, Donna McCormick, Romeo Dontae Tresean Biggz
Pierre and Sean Rowley explain why inclusive co-produced research and knowledge with
people who are labelled with intellectual disabilities, is a political and rights-based practice.
Building on the slogan of the disability movement ‘Nothing about us without us’ (Charlton,
1998), they explain how ensuring societal respect and value begins with a sharing of control
over research processes to challenge wider societal attitudes and discrimination. The chapter