Research Handbook on Disability Policy


Research Handbook on Disability Policy

9781800373648 Edward Elgar Publishing
Edited by Sally Robinson, College of Nursing and Health Sciences, Flinders University and Karen R. Fisher, Social Policy Research Centre, UNSW Sydney Australia
Publication Date: 2023 ISBN: 978 1 80037 364 8 Extent: 888 pp
Examining how policy affects the human rights of people with disabilities, this topical Handbook presents diverse empirical experiences of disability policy and identifies the changes that are necessary to achieve social justice.

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Examining how policy affects the human rights of people with disabilities, this topical Handbook presents diverse empirical experiences of disability policy and identifies the changes that are necessary to achieve social justice.

Expansive in scope, the Handbook illustrates how language, law and concepts about human rights impact the way that disability policy is framed and implemented. Chapters use the lenses of human rights, welfare, health and economic inclusion to address contemporary policy questions such as globalization and technology. Grounded in lived experiences, the Handbook interweaves personal narratives from people with disabilities which provide important insights into how policy impacts opportunity and point to future possibilities for the influence of human rights on policy change. As narrative author Karla Garcia Luiz reflects, ‘We often share situations that make us feel lonely, exhausted, insecure, questioning ourselves.... When we share, we realize that these feelings are collective and, [in]naming them we re-signify them and, thus, we strengthen ourselves for political action’.

Informed by international, comparative experiences, this Handbook will be an engaging and perceptive resource for students and scholars of sociology and social policy, health and welfare studies and disability policy. With diverse examples from across the Global North and South, it will also appeal to people working in social policy who are looking to develop and reform policies to be more inclusive, accessible and progressive towards people with disabilities.
Critical Acclaim
‘The entire Handbook is useful as a research reference and policy guide to all stakeholders in rights-based disability research and policy, such as, researchers, policy makers, and activists in non-governmental sectors and civil society. The editors, authors and publisher of this Handbook deserve special appreciation and congratulation for this knowledge contribution for the ultimate beneficiaries, viz., persons with disabilities in the world at large.’
– M.R. Narayana, Journal of Economics and Governance

‘Research Handbook on Disability Policy edited by Sally Robinson and Karen R. Fisher is a timely and important contribution to the emerging literature on disability, human rights and social policy. Grounded in the Convention on the Rights of Persons with Disabilities, the volume explores issues of human rights, welfare, health and economic inclusion from an impressive range of scholars including strong representation from the Global South. Each section starts with the lived experience of persons with disabilities through short essays, poems and reflections which helps the reader remember these are not simply policies, but pathways to a life of equality and inclusion. This Handbook is a vast and deep compendium which is required for all library and disability scholars’ shelves.’
– Tim Stainton, University of British Columbia, Canada
Contributors: Joao Acharan, Supriya Akerkar, Gabriel Amitsis, Sadiel Albakri, Elaine Arnull, Umi Asaka, Victoria Austin, Kara B. Ayers, Giulia Barbareschi, Bella Bauer, Denise Beckwith, Toon Benoot, Mario Biggeri, Mia Boonen, Katherine Boydell, Eleanor Brown, Anne M. Bryden, Paula Lucía Camino Morgado, Maria Engrácia Cardim, María Gómez-Carrillo de Castro, Renato Antonio Constantino Caycho, Tim Chan, Heng-Hao Chang, Yi-Chun Chou, Chien-Ju Chou, Federico Ciani, Mariano Coello, Nora Colton, Laureane Marilia de Lima Costa, Mariana Lucia Agnese Costa, Tillie Curran, Jamie Danemayer, Sheelagh Daniels-Mayes, Sunil Deepak, Alexandra Devine, Angela Dew, Em Dewhurst, Helen Dickinson, Sarah Donnelly, Alexander Elliott, Brooke Ellison, Paul Emong, Delia Ferri, Luciano Bottini Filho, Jennifer French, Jo Ferrie, Karen R Fisher, Joe Foster, Patsie Frawley, Olivia Geehan, Marivete Gesser, Gerard Goggin, Dan Goodley, Brian Gran, Giampiero Griffo, Paul Harpur, Arne Henning Eide, Maree Higgins, Catherine Holloway, Sarah I. Huque, Julio Hasbún-Mancilla, Mary Ann Jackson, Sionann Jans, Catherine Elisa John, Kelley Johnson, Mahuya Kanjilal, Rainer Kattel, Grace Khawam, Naonori Kodate, Mukta Kulkarni, Renata Anahí Bregaglio Lazarte, Nicole Laurance, Ann Leahy, Kirsty Liddiard, Cindy Liu, Karla Garcia Luiz, Sellah Lusweti, Brent Lyons, Yurie Maeda, Mac, Yvette Maker, Hasheem Mannan, Flavia Marcello, Fotini Marini, Amy Marks, Abi Marutama, Fiona McKay, Damian Mellifont, Anahí Guedes de Mello, Brigit Mirfin-Veitch, Jess Mitchell, Sophie Mitra, Daniel Mont, Zuleima Dafne Morgado-Ramirez, Zachary A. Morris, Mahmoud Murad, Julieth Musengi, Martin Musengi, Jun Nakagawa, Sue Olney, Diarmuid O’Shea, Pey-Chun Pan, Martin Partridge, Aneesh Peter, David Pettinicchio, Paula Campos Pinto, Eban Pollard, Lengga Pradipta, Michael J. Prince, Erin Pritchard, Peter Raisbeck, Kim Robinson, Sally Robinson, Rudi Roose, Katherine Runswick-Cole, Daniel Samosh, Alecia Santuzzi, Jackie Saunders, Sophie Savage, Monica C. Schneider, Halimu Shauri, Thais Becker Henriques Silveira, Catherine Smith, Louisa Smith, Tracy Smith-Carrier, Jennifer Smith-Merry, Michael Ashley Stein, Antoni Tsaputra, Lee Tsourvakas, Francisca Valdebenito-Acosta, Oriol Valles Codina, Catherine Kramarczuk Voulgarides, Elisabeth Wacker, Kuo-yu (Lisa) Wang, Robbie Francis Watene, Joanne Watson, Yvonne Wechuli, Ayah Wehbe, Ruth Wells, Raelene West, Sally Whitney, Erin Wilson, Meng Ee Wong, Daryl W.J. Yang, Eun-Ju Yoo, Anica Zeyen, Honglu Zhu, Kuansong Victor Zhuang, Tessa-May Zirnsak

Introduction to disability policy through a human rights lens 1
Karen R. Fisher and Sally Robinson

Sophie Mitra and Sally Robinson
1 Narrative 1: Mia’s piece – Candice, Defying Gravity and I 15
Mia Boonen
2 Knowledge production and human rights enhancement: the role and
potentialities of emancipatory disability research 17
Mario Biggeri, Federico Ciani, Giampiero Griffo and Sunil Deepak
3 A journey together – co-creation and experiential knowledge of people
with intellectual disabilities in social policy 33
María Gómez-Carrillo de Castro
4 Accessibility policies in Brazil: negotiating collective access through
the principles of Disability Justice for a Brazilian Center for Disability Studies 49
Marivete Gesser and Anahí Guedes de Mello
5 Narrative 2: evil: disabled villains in media 65
Em Dewhurst
6 Developing a participatory indicators-based framework for monitoring
disability rights 67
Paula Campos Pinto and Maria Engrácia Cardim
7 Disabled person-led monitoring of the UNCRPD in Aotearoa New
Zealand: maximising the potential of civil society in the implementation
of Article 33.3 85
Robbie Francis Watene, Brigit Mirfin-Veitch and Umi Asaka
8 Narrative 3: if my childhood can have CRPD’s company 100
Honglu Zhu
9 The right of people with disabilities to participate in cultural life: is
Cinderella going to the ball? 102
Delia Ferri and Ann Leahy
10 When the state does not care: Disability rights in a context of
multi-layered crises, instability and disablism 118
Grace Khawam and Supriya Akerkar
11 Decentralization, empowerment and grassroots engagement: advocacy
organizations navigating the implementation of codified disability
rights in Malawi 135
Sarah I. Huque
12 From enabling access to enabling rights: Singapore’s practical approach
to disability policy 151
Daryl W.J. Yang, Kuansong Victor Zhuang, Gerard Goggin and Meng Ee Wong
13 An accessible public transit system as a right for people with disabilities
in Taiwan 166
Kuo-yu (Lisa) Wang and Pey-chun Pan
14 Narrative 4: the effect of disability policy on lives 183
Chien-Ju Chou
15 The EU framework of people with disabilities’ rights – an intertemporal
equilibrium between regulatory and policy paradigms 186
Gabriel Amitsis and Fotini Marini
16 The influence of disability models in Indonesian past and present:
disability rights law-making and policy-making 202
Abi Marutama, Antoni Tsaputra and Lengga Pradipta
17 The Accessible Canada Act: a political expression of disability rights as
human rights 217
Michael J. Prince
18 Narrative 5: locked-in, locked-down: lived experience of a non-speaker 233
Tim Chan
19 From international standard to national practice: the role of national
disability institutions in making the Convention on the Rights of
Persons with Disabilities a reality in South and Central America 234
Renata Anahí Bregaglio Lazarte, Paula Lucía Camino Morgado and Renato
Antonio Constantino Caycho
20 Narrative 6: affection and emancipation: the friendship of four disabled women 251
Karla Garcia Luiz, Laureane Marília de Lima Costa, Mariana Lúcia Agnese
Costa e Rosa and Thaís Becker Henriques Silveira
21 Decolonizing disability rights policies through indigenous theorization:
the case of Zimbabwe 256
Martin Musengi

Karen R. Fisher and Olivia Geehan
22 Narrative 7: Disabled Howl – AS1428.1 2021 and all that jazz 272
Peter Raisbeck
23 From care and welfare to independent living? Interpreting and assessing
the human right to live independently and be included in the community 274
Yvette Maker
24 Sexuality and relationships: informing rights-based policy and practice
through research with and by people with intellectual disability in
Australia and Aotearoa New Zealand 289
Patsie Frawley and Brigit Mirfin-Veitch
25 Narrative 8: a quiet genocide: the power of segregation 303
Cindy Liu
26 Engaged advocacy: a framework for inclusion of people from refugee
and asylum-seeking backgrounds in disability policy 305
Maree Higgins, Mahmoud Murad, Kim Robinson, Angela Dew, Katherine
Boydell, Fiona McKay, Joanne Watson, Mariano Coello, Louisa Smith, Kelley
Johnson and Ruth Wells
27 Narrative 9: my work advocating for the Syrian community 322
Mahmoud Murad, assisted by Miream Salameh and Maree Higgins,
translated by Miream Salameh
28 Australian National Disability Insurance Scheme and disability identity:
how welfare policy impacts narratives of disability 330
Tessa-May Zirnsak
29 Tracing the welfare–rights connection in American disability policymaking 346
David Pettinicchio
30 Questioning the dominant welfare discourse on personalization and
autonomy embodied in personal budget policy 361
Toon Benoot and Rudi Roose
31 Negotiating rights in education: an examination of U.S. education
disability policy 374
Catherine Kramarczuk Voulgarides
32 Narrative 10: my education story 387
Alexander Elliott
33 Preventing catastrophe: the welfare state and disaster risk for people
with disabilities 389
Zachary A. Morris
34 Strategic human rights-based policy reforms for making Australian
universities equally accessible to students, staff, and faculty who are
Indigenous people with disability 402
Sheelagh Daniels-Mayes, Paul Harpur and Michael Ashley Stein
35 Narrative 11: the “lucky” one 418
Ayah Wehbe
36 Exploring equality and non-discrimination of disabled students in
policy and practice in public universities in Uganda 421
Paul Emong and Anica Zeyen
37 Participation in personalization of minority cultural groups: lived
experience and diversity in the UK 436
Martin Partridge, Mahuya Kanjilal and Elaine Arnull
38 Materializing change: exploring human rights-based approaches to
improve built environment accessibility at the neighbourhood scale 451
Mary Ann Jackson, Erin Wilson and Flavia Marcello
39 Narrative 12: the draining expectations placed upon marginalised groups 468
Mac Zamani
40 Alternative community living practices in Taiwan: rethinking
de-institutionalization and the human rights model 469
Heng-hao Chang and Yi-chun Chou
41 Mainstreaming disability in Indonesian development: rethinking
disability citizenship to move beyond a welfare focus 484
Antoni Tsaputra and Eban Pollard
42 Housing deficit for people with disabilities in a radically neoliberal
country: Chile’s case 500
Francisca Valdebenito-Acosta, Julio Hasbún-Mancilla and Joao Acharan
43 Inclusion of students with visual impairment in Indian higher education:
a critical inquiry from a human rights perspective 516
Aneesh Peter and Catherine Elisa John

Sally Robinson
44 Narrative 13: voice, choice and a better outcome 535
Raelene West
45 Making disability known: medicalisation of disability and the
development of the International Classification of Functioning (ICF) 538
Jennifer Smith-Merry
46 Disabilities, evidence-making, and quality of life: the three core human
rights principles framework 550
Luciano Bottini Filho
47 Establishing a human rights-based approach in healthcare: a UK
example moving beyond policy and into private spaces 564
Eleanor Brown and Jo Ferrie
48 Narrative 14: technology in the lives of people with disabilities 580
Brooke Ellison
49 Disability and human rights: the right to benefit from scientific progress 582
Anne M. Bryden, Jennifer French and Brian Gran
50 Chasing a runaway train: disability policy grapples with accelerated
prenatal genetic technologies 599
Kara B. Ayers and Monica C. Schneider
51 Care robots as enabling assistive technology: implications for quality of
life and disability policy 614
Naonori Kodate, Hasheem Mannan, Sarah Donnelly, Yurie Maeda, and
Diarmuid O’Shea
52 Narrative 15: disability rights and robotics: being there without being there 631
Sophie Savage and Tillie Curran
53 ‘It’s about quality of life rather than length of life’: using and refusing
policy discourse in the lives of children labelled with life-limiting and/
or life-threatening conditions 635
Katherine Runswick-Cole, Dan Goodley, Kirsty Liddiard and Sally Whitney
54 Inclusive sexuality education: achieving sexual justice, sexual pleasure
and sexual agency for women with disability 652
Denise Beckwith and Nicole Laurance
55 Narrative 16: in her lifetime 666
Lee Tsourvakas
56 Pain management for palliative care patients with disabilities: revisiting
morphine prescription policies in developing contexts 668
Julieth Musengi and Martin Musengi

Karen R. Fisher and Bella Bauer
57 Narrative 17: supported or stuck? Disability employment policy for
young people 683
Sionainn Jans
58 Economics of inclusion 685
Daniel Mont
59 Heightism, hierarchies and human rights: how a normalcy of disability
infringes on the rights of people with dwarfism 690
Erin Pritchard
60 Post-school transition process in a pandemic: how can young people
with disability be better supported? 705
Helen Dickinson, Catherine Smith, Amy Marks and Jess Mitchell
61 The right to work “on an equal basis with others”: examining disability
employment policies in Australia through the lens of a health and
economic crisis 719
Sue Olney and Alexandra Devine
62 Narrative 18: sanist wonderland 737
Damian Mellifont
63 Does the CRPD matter? A comparison of sheltered workshop policies
in Japan, Taiwan, and South Korea 739
Yi-Chun Chou, Jun Nakagawa, and Eun-Ju Yoo
64 Disability as an enabler of career success and inclusion 754
Daniel Samosh, Mukta Kulkarni, Alecia Santuzzi and Brent Lyons
65 Narrative 19: I want a job 770
Sadiel Albakri
66 Social entrepreneurship between earning a living and emancipation,
impacts of microfinance for people with disabilities in Kenya 771
Yvonne Wechuli, Sellah Lusweti, Halimu Shauri and Elisabeth Wacker
67 Advancing income security policy using universal design: the case of
the Ontario Disability Support Program (ODSP) in Ontario, Canada 787
Tracy Smith-Carrier
68 Narrative 20: living with a disability: what difference would
a guaranteed livable income make? 803
Joe Foster
69 A human rights-based approach (HRBA) to assistive technology
provision in global policy 805
Catherine Holloway, Giulia Barbareschi, Oriol Valles Codina, Nora Colton,
Arne Henning Eide, Zuleima Dafne Morgado-Ramirez, Jamie Danemayer,
Rainer Kattel and Victoria Austin
70 Conclusion on disability policy 821
Sally Robinson and Karen R. Fisher

Index 828
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