Research Handbook on Disability Policy

Edited by Sally Robinson, College of Nursing and Health Sciences, Flinders University and Karen R. Fisher, Social Policy Research Centre, UNSW Sydney Australia

• Contents:Introduction to disability policy through a human rights lens 1Karen R. Fisher and Sally RobinsonPART I HUMAN RIGHTSSophie Mitra and Sally Robinson1 Narrative 1: Mia’s piece – Candice, Defying Gravity and I 15Mia Boonen2 Knowledge production and human rights enhancement: the role andpotentialities of emancipatory disability research 17Mario Biggeri, Federico Ciani, Giampiero Griffo and Sunil Deepak3 A journey together – co-creation and experiential knowledge of peoplewith intellectual disabilities in social policy 33María Gómez-Carrillo de Castro4 Accessibility policies in Brazil: negotiating collective access throughthe principles of Disability Justice for a Brazilian Center for Disability Studies 49Marivete Gesser and Anahí Guedes de Mello5 Narrative 2: evil: disabled villains in media 65Em Dewhurst6 Developing a participatory indicators-based framework for monitoringdisability rights 67Paula Campos Pinto and Maria Engrácia Cardim7 Disabled person-led monitoring of the UNCRPD in Aotearoa NewZealand: maximising the potential of civil society in the implementationof Article 33.3 85Robbie Francis Watene, Brigit Mirfin-Veitch and Umi Asaka8 Narrative 3: if my childhood can have CRPD’s company 100Honglu Zhu9 The right of people with disabilities to participate in cultural life: isCinderella going to the ball? 102Delia Ferri and Ann Leahy10 When the state does not care: Disability rights in a context ofmulti-layered crises, instability and disablism 118Grace Khawam and Supriya Akerkar11 Decentralization, empowerment and grassroots engagement: advocacyorganizations navigating the implementation of codified disabilityrights in Malawi 135Sarah I. Huque12 From enabling access to enabling rights: Singapore’s practical approachto disability policy 151Daryl W.J. Yang, Kuansong Victor Zhuang, Gerard Goggin and Meng Ee Wong13 An accessible public transit system as a right for people with disabilitiesin Taiwan 166Kuo-yu (Lisa) Wang and Pey-chun Pan14 Narrative 4: the effect of disability policy on lives 183Chien-Ju Chou15 The EU framework of people with disabilities’ rights – an intertemporalequilibrium between regulatory and policy paradigms 186Gabriel Amitsis and Fotini Marini16 The influence of disability models in Indonesian past and present:disability rights law-making and policy-making 202Abi Marutama, Antoni Tsaputra and Lengga Pradipta17 The Accessible Canada Act: a political expression of disability rights ashuman rights 217Michael J. Prince18 Narrative 5: locked-in, locked-down: lived experience of a non-speaker 233Tim Chan19 From international standard to national practice: the role of nationaldisability institutions in making the Convention on the Rights ofPersons with Disabilities a reality in South and Central America 234Renata Anahí Bregaglio Lazarte, Paula Lucía Camino Morgado and RenatoAntonio Constantino Caycho20 Narrative 6: affection and emancipation: the friendship of four disabled women 251Karla Garcia Luiz, Laureane Marília de Lima Costa, Mariana Lúcia AgneseCosta e Rosa and Thaís Becker Henriques Silveira21 Decolonizing disability rights policies through indigenous theorization:the case of Zimbabwe 256Martin MusengiPART II WELFAREKaren R. Fisher and Olivia Geehan22 Narrative 7: Disabled Howl – AS1428.1 2021 and all that jazz 272Peter Raisbeck23 From care and welfare to independent living? Interpreting and assessingthe human right to live independently and be included in the community 274Yvette Maker24 Sexuality and relationships: informing rights-based policy and practicethrough research with and by people with intellectual disability inAustralia and Aotearoa New Zealand 289Patsie Frawley and Brigit Mirfin-Veitch25 Narrative 8: a quiet genocide: the power of segregation 303Cindy Liu26 Engaged advocacy: a framework for inclusion of people from refugeeand asylum-seeking backgrounds in disability policy 305Maree Higgins, Mahmoud Murad, Kim Robinson, Angela Dew, KatherineBoydell, Fiona McKay, Joanne Watson, Mariano Coello, Louisa Smith, KelleyJohnson and Ruth Wells27 Narrative 9: my work advocating for the Syrian community 322Mahmoud Murad, assisted by Miream Salameh and Maree Higgins,translated by Miream Salameh28 Australian National Disability Insurance Scheme and disability identity:how welfare policy impacts narratives of disability 330Tessa-May Zirnsak29 Tracing the welfare–rights connection in American disability policymaking 346David Pettinicchio30 Questioning the dominant welfare discourse on personalization andautonomy embodied in personal budget policy 361Toon Benoot and Rudi Roose31 Negotiating rights in education: an examination of U.S. educationdisability policy 374Catherine Kramarczuk Voulgarides32 Narrative 10: my education story 387Alexander Elliott33 Preventing catastrophe: the welfare state and disaster risk for peoplewith disabilities 389Zachary A. Morris34 Strategic human rights-based policy reforms for making Australianuniversities equally accessible to students, staff, and faculty who areIndigenous people with disability 402Sheelagh Daniels-Mayes, Paul Harpur and Michael Ashley Stein35 Narrative 11: the “lucky” one 418Ayah Wehbe36 Exploring equality and non-discrimination of disabled students inpolicy and practice in public universities in Uganda 421Paul Emong and Anica Zeyen37 Participation in personalization of minority cultural groups: livedexperience and diversity in the UK 436Martin Partridge, Mahuya Kanjilal and Elaine Arnull38 Materializing change: exploring human rights-based approaches toimprove built environment accessibility at the neighbourhood scale 451Mary Ann Jackson, Erin Wilson and Flavia Marcello39 Narrative 12: the draining expectations placed upon marginalised groups 468Mac Zamani40 Alternative community living practices in Taiwan: rethinkingde-institutionalization and the human rights model 469Heng-hao Chang and Yi-chun Chou41 Mainstreaming disability in Indonesian development: rethinkingdisability citizenship to move beyond a welfare focus 484Antoni Tsaputra and Eban Pollard42 Housing deficit for people with disabilities in a radically neoliberalcountry: Chile’s case 500Francisca Valdebenito-Acosta, Julio Hasbún-Mancilla and Joao Acharan43 Inclusion of students with visual impairment in Indian higher education:a critical inquiry from a human rights perspective 516Aneesh Peter and Catherine Elisa JohnPART III HEALTHSally Robinson44 Narrative 13: voice, choice and a better outcome 535Raelene West45 Making disability known: medicalisation of disability and thedevelopment of the International Classification of Functioning (ICF) 538Jennifer Smith-Merry46 Disabilities, evidence-making, and quality of life: the three core humanrights principles framework 550Luciano Bottini Filho47 Establishing a human rights-based approach in healthcare: a UKexample moving beyond policy and into private spaces 564Eleanor Brown and Jo Ferrie48 Narrative 14: technology in the lives of people with disabilities 580Brooke Ellison49 Disability and human rights: the right to benefit from scientific progress 582Anne M. Bryden, Jennifer French and Brian Gran50 Chasing a runaway train: disability policy grapples with acceleratedprenatal genetic technologies 599Kara B. Ayers and Monica C. Schneider51 Care robots as enabling assistive technology: implications for quality oflife and disability policy 614Naonori Kodate, Hasheem Mannan, Sarah Donnelly, Yurie Maeda, andDiarmuid O’Shea52 Narrative 15: disability rights and robotics: being there without being there 631Sophie Savage and Tillie Curran53 ‘It’s about quality of life rather than length of life’: using and refusingpolicy discourse in the lives of children labelled with life-limiting and/or life-threatening conditions 635Katherine Runswick-Cole, Dan Goodley, Kirsty Liddiard and Sally Whitney54 Inclusive sexuality education: achieving sexual justice, sexual pleasureand sexual agency for women with disability 652Denise Beckwith and Nicole Laurance55 Narrative 16: in her lifetime 666Lee Tsourvakas56 Pain management for palliative care patients with disabilities: revisitingmorphine prescription policies in developing contexts 668Julieth Musengi and Martin MusengiPART IV ECONOMIC INCLUSIONKaren R. Fisher and Bella Bauer57 Narrative 17: supported or stuck? Disability employment policy foryoung people 683Sionainn Jans58 Economics of inclusion 685Daniel Mont59 Heightism, hierarchies and human rights: how a normalcy of disabilityinfringes on the rights of people with dwarfism 690Erin Pritchard60 Post-school transition process in a pandemic: how can young peoplewith disability be better supported? 705Helen Dickinson, Catherine Smith, Amy Marks and Jess Mitchell61 The right to work “on an equal basis with others”: examining disabilityemployment policies in Australia through the lens of a health andeconomic crisis 719Sue Olney and Alexandra Devine62 Narrative 18: sanist wonderland 737Damian Mellifont63 Does the CRPD matter? A comparison of sheltered workshop policiesin Japan, Taiwan, and South Korea 739Yi-Chun Chou, Jun Nakagawa, and Eun-Ju Yoo64 Disability as an enabler of career success and inclusion 754Daniel Samosh, Mukta Kulkarni, Alecia Santuzzi and Brent Lyons65 Narrative 19: I want a job 770Sadiel Albakri66 Social entrepreneurship between earning a living and emancipation,impacts of microfinance for people with disabilities in Kenya 771Yvonne Wechuli, Sellah Lusweti, Halimu Shauri and Elisabeth Wacker67 Advancing income security policy using universal design: the case ofthe Ontario Disability Support Program (ODSP) in Ontario, Canada 787Tracy Smith-Carrier68 Narrative 20: living with a disability: what difference woulda guaranteed livable income make? 803Joe Foster69 A human rights-based approach (HRBA) to assistive technologyprovision in global policy 805Catherine Holloway, Giulia Barbareschi, Oriol Valles Codina, Nora Colton,Arne Henning Eide, Zuleima Dafne Morgado-Ramirez, Jamie Danemayer,Rainer Kattel and Victoria Austin70 Conclusion on disability policy 821Sally Robinson and Karen R. FisherIndex 828

‘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.’