Research Handbook on Disability Policy

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Contents
List of contributors
Acknowledgements
Introduction to disability policy through a human rights lens • Karen R. Fisher and Sally Robinson
PART I: HUMAN RIGHTS
	1 Narrative 1: Mia’s piece – Candice, “Defying Gravity” and I • Mia Boonen
	2 Knowledge production and human rights enhancement: the role and potentialities of emancipatory disability research • 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 • 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 • Marivete Gesser and Anahí Guedes de Mello
	5 Narrative 2: Evil: disabled villains in media • Em Dewhurst
	6 Developing a participatory indicators-based framework for monitoring disability rights • 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 • Robbie Francis Watene, Brigit Mirfin-Veitch and Umi Asaka
	8 Narrative 3: If my childhood can have CRPD’s company • Honglu Zhu
	9 The right of people with disabilities to participate in cultural life: is Cinderella going to the ball? • Delia Ferri and Ann Leahy
	10 When the state does not care: disability rights in a context of multi-layered crises, instability and disablism • Grace Khawam and Supriya Akerkar
	11 Decentralization, empowerment and grassroots engagement: advocacy organizations navigating the implementation of codified disability rights in Malawi • Sarah I. Huque
	12 From enabling access to enabling rights: Singapore’s practical approach to disability policy • 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 • Kuo-yu (Lisa) Wang and Pey-chun Pan
	14 Narrative 4: The effect of disability policy on lives • Chien-Ju Chou
	15 The EU framework of people with disabilities’ rights – an intertemporal equilibrium between regulatory and policy paradigms • Gabriel Amitsis and Fotini Marini
	16 The influence of disability models in Indonesian past and present: disability rights law-making and policy-making • Abi Marutama, Antoni Tsaputra and Lengga Pradipta
	17 The Accessible Canada Act: a political expression of disability rights as human rights • Michael J. Prince
	18 Narrative 5: Locked-in, locked-down: lived experience of a non-speaker • 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 • 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 • 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 • Martin Musengi
PART II: WELFARE
	22 Narrative 7: Disabled Howl – AS1428.1 2021 and all that jazz • 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 • 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 • Patsie Frawley and Brigit Mirfin-Veitch
	25 Narrative 8: A quiet genocide: the power of segregation • Cindy Liu
	26 Engaged advocacy: a framework for inclusion of people from refugee and asylum-seeking backgrounds in disability policy • 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 communityMahmoud Murad, assisted by Miream Salameh and Maree Higgins,translated by Miream Salameh
	28 The Australian National Disability Insurance Scheme and disability identity: how welfare policy impacts narratives of disability • Tessa-May Zirnsak
	29 Tracing the welfare–rights connection in American disability policymaking • David Pettinicchio
	30 Questioning the dominant welfare discourse on personalization and autonomy embodied in personal budget policy • Toon Benoot and Rudi Roose
	31 Negotiating rights in education: an examination of U.S. education disability policy • Catherine Kramarczuk Voulgarides
	32 Narrative 10: My education story • Alexander Elliott
	33 Preventing catastrophe: the welfare state and disaster risk for people with disabilities • 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 • Sheelagh Daniels-Mayes, Paul Harpur and Michael Ashley Stein
	35 Narrative 11: The “lucky” one • Ayah Wehbe
	36 Exploring equality and non-discrimination of disabled students inpolicy and practice in public universities in Uganda • Paul Emong and Anica Zeyen
	37 Participation in personalization of minority cultural groups: lived experience and diversity in the UK • Martin Partridge, Mahuya Kanjilal and Elaine Arnull
	38 Materializing change: exploring human rights-based approaches to improve built environment accessibility at the neighbourhood scale • Mary Ann Jackson, Erin Wilson and Flavia Marcello
	39 Narrative 12: The draining expectations placed upon marginalised groups • Mac Zamani
	40 Alternative community living practices in Taiwan: rethinking de-institutionalization and the human rights model • Heng-hao Chang and Yi-Chun Chou
	41 Mainstreaming disability in Indonesian development: rethinking disability citizenship to move beyond a welfare focus • Antoni Tsaputra and Eban Pollard
	42 Housing deficit for people with disabilities in a radically neoliberal country: Chile’s case • Francisca Valdebenito-Acosta, Julio Hasbún-Mancilla and Joao Acharan-Riffo
	43 Inclusion of students with visual impairment in Indian higher education: a critical inquiry from a human rights perspective • Aneesh Peter and Catherine Elisa John
PART III: HEALTH
	44 Narrative 13: Voice, choice and a better outcome • Raelene West
	45 Making disability known: medicalisation of disability and the development of the International Classification of Functioning • Jennifer Smith-Merry
	46 Disabilities, evidence-making and quality of life: the three core human rights principles framework • Luciano Bottini Filho
	47 Establishing a human rights-based approach in healthcare: a UK example moving beyond policy and into private spaces • Eleanor Brown and Jo Ferrie
	48 Narrative 14: Technology in the lives of people with disabilities • Brooke Ellison
	49 Disability and human rights: the right to benefit from scientific progress • Anne M. Bryden, Jennifer French and Brian Gran
	50 Chasing a runaway train: disability policy grapples with accelerated prenatal genetic technologies • Kara B. Ayers and Monica C. Schneider
	51 Care robots as enabling assistive technology: implications for quality of life and disability policy • Naonori Kodate, Hasheem Mannan, Sarah Donnelly, Yurie Maeda and Diarmuid O’Shea
	52 Narrative 15: Disability rights and robotics: being there without being there • 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 • 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 • Denise Beckwith and Nicole Laurance
	55 Narrative 16: In her lifetime • Lee Tsourvakas
	56 Pain management for palliative care patients with disabilities: revisiting morphine prescription policies in developing contexts • Julieth Musengi and Martin Musengi
PART IV: ECONOMIC INCLUSION
	57 Narrative 17: Supported or stuck? Disability employment policy for young people • Sionainn Jans
	58 Economics of inclusion • Daniel Mont
	59 Heightism, hierarchies and human rights: how a normalcy of disability infringes on the rights of people with dwarfism • Erin Pritchard
	60 Post-school transition process in a pandemic: how can young people with disability be better supported? • 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 • Sue Olney and Alexandra Devine
	62 Narrative 18: Sanist wonderland • Damian Mellifont
	63 Does the CRPD matter? A comparison of sheltered workshop policies in Japan, Taiwan, and South Korea • Yi-Chun Chou, Jun Nakagawa and Eun-Ju Yoo
	64 Disability as an enabler of career success and inclusion • Daniel Samosh, Mukta Kulkarni, Alecia Santuzzi and Brent Lyons
	65 Narrative 19: I want a job • Sadiel Albakri
	66 Social entrepreneurship between earning a living and emancipation: impact of microfinance on people with disabilities in Kenya • Yvonne Wechuli, Sellah Lusweti, Halimu Shauri and Elisabeth Wacker
	67 Advancing income security policy using universal design: the case of the Ontario Disability Support Programme in Ontario, Canada • Tracy Smith-Carrier
	68 Narrative 20: Living with a disability: what difference would a guaranteed livable income make? • Joe Foster
	69 A human rights-based approach to assistive technology provision in global policy • 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 • Sally Robinson and Karen R. Fisher
Index