<i>‘This compelling </i>Research Agenda<i> provides a much needed guide to lived experience – a crucial yet poorly understood precondition for transformative disability policy. Featuring authoritative, lucid and imaginative contributions from a diverse range of researchers, practitioners and leaders globally, it lays out the agenda for lived experience, disability and policy for years to come.’</i>

- Gerard Goggin, Western Sydney University, Australia,

‘A Research Agenda for Lived Experience and Disability Policy <i>is an essential and compelling book for disability policymakers, scholars and students across the globe. It inspires readers to become better attuned to the fundamental importance of the disability community’s lived experience mantra: “Nothing about us without us”.</i>

- Peter Blanck, Burton Blatt Institute at Syracuse University, USA,

Elgar Research Agendas outline the future of research in each area. Leading scholars are given the space to explore their subject in provocative ways and map out the potential directions of travel. They are relevant but also visionary.


This highly informative Research Agenda examines how lived experiences are understood and incorporated in disability policy. It explores various policymaking contexts, highlighting the opportunities and challenges that derive from centering lived experience.


Expert authors pair case studies from across Asia, Australia and North America with theoretical grounding to reorient policy thinking towards voices that have been traditionally excluded. Evaluating topics such as rural contexts, times of conflict and transport and health policy, chapters highlight how the voices of Indigenous populations, in particular, have been marginalised in policymaking. The authors powerfully demonstrate that lived expertise is a unique form of knowledge which should be valued and integral to all disability policy making and research.


This is a valuable resource for students and scholars of disability studies, sociology, and policy studies. Its insights into lived experience also make it prime readership for professionals and practitioners in the areas of social policy and social work.

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This highly informative Research Agenda examines how lived experiences are understood and incorporated in disability policy. It explores various policymaking contexts, highlighting the opportunities and challenges that derive from centering lived experience.
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Contents 1 Introduction: Lived experience and policy making 1 Jennifer Smith-Merry and Damian Mellifont 2 Centring disabled voices: Inclusion of lived experiences in policy 8 Sze Hwee Jace Tay and Kuansong Victor Zhuang 3 Re-imagining policymaking with rural people with disability in Australia 18 Claire Quilliam, Luke Wakely and Jodie Bailie 4 Navigating disability in times of conflict: The case of disability policies in Pakistan 32 Farman Ali, Zia Ullah Akhunzada and Mandy Lau 5 The multi-layered, multi-faceted importance of the lived experience in disability health policy 44 Dinesh Palipana and Gisselle Gallego 6 The role of lived experience and the right to participate in the CRPD: The case of disability policymaking in technocratic Singapore 56 Daryl W. J. Yang 7 Indonesia’s digital disability inclusion: From regulation to policymaking and practice 69 Muhammad Novsyaroni Umar, Galuh Fitri Amalia Susilo and Muhammad Karim Amrullah 8 From experience to policy: The influence of lived experience on disability transport policy in Sydney, Australia 87 Miguel Loyola and Jennifer Kent 9 What is the problem with private supported boarding houses? Resident perspectives on the Queensland Parliamentary Inquiry 100 Elroy Dearn, Neil Turton-Lane and Matilda Alexander 10 The research agenda for assisted dying policy for psychiatric disability 117 Sam Sam and Jennifer Smith-Merry 11 Decolonising the Indigenous disability sciences in Australia and New Zealand 126 Jemma Chao, Alix Beckett, Sarah Veli-Gold and John Gilroy 12 The good, the bad and the ugly: Accommodations for Indigenous Canadian civil servants with disabilities 145 John T. Ward, Kevin P. Morgan, Lexi (Giizhigokwe) Nahwegiizhic and Annie Smith St-Georges 13 Radical disability disclosure: How to encourage an invisible community to engage in disability policymaking 166 Téa Rundback 14 Co-producing knowledge to inform policy: A disabled person’s reflections on processes, learnings, strengths, and challenges 175 Susan Wadsworth and Rachelle A. Martin
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Produktdetaljer

ISBN
9781035332397
Publisert
2026-04-28
Utgiver
Edward Elgar Publishing Ltd
Høyde
234 mm
Bredde
156 mm
Aldersnivå
P, 06
Språk
Product language
Engelsk
Format
Product format
Innbundet
Antall sider
220

Biografisk notat

Edited by Jennifer Smith-Merry, Professor of Health and Social Policy, Australian Research Council Industry Laureate Fellow, and Damian Mellifont, Lecturer, Centre for Disability Research and Policy, The University of Sydney, Australia