Prelims

Half Title Page

ADVANCES IN DISABILITY RESEARCH ETHICS

Series Page

ADVANCES IN RESEARCH ETHICS AND INTEGRITY

Series Editor: Dr Ron Iphofen, FAcSS, Independent Consultant, UK

Recent volumes:

Editorial Advisory Group

Helen Busby, PhD, Independent Research Ethics Advisor

Robert Dingwall, FAcSS, Dingwayy Enterprises Ltd and Nottingham Trent University, UK

Nathan Emmerich, Institute of Ethics, Dublin City University and Queens University Belfast, UK

Julian Kinderlerer, Emeritus Professor, University of Cape Town, South Africa

Mark Israel, Australasian Human Research Ethics Consultancy Services, Australia

John Oates, FAcSS, Open University, UK

Emily Postan, Chancellor's Fellow in Bioethics, University of Edinburgh Law School, UK

Martin Tolich, University of Otago, New Zealand

Title Page

ADVANCES IN RESEARCH ETHICS AND INTEGRITY - VOLUME 11

ADVANCES IN DISABILITY RESEARCH ETHICS

EDITED BY

ANNE GOOD

Independent Researcher, Ireland

IRIS ELLIOTT

Queens University Belfast, UK

AND

SHARON MALLON

University of Staffordshire, UK

Copyright Page

Emerald Publishing Limited

Emerald Publishing, Floor 5, Northspring, 21-23 Wellington Street, Leeds LS1 4DL.

First edition 2024

Editorial matter and selection © 2024 Anne Good, Iris Elliott and Sharon Mallon.

Individual chapters © 2024 The authors.

Published under exclusive licence by Emerald Publishing Limited.

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No part of this book may be reproduced, stored in a retrieval system, transmitted in any form or by any means electronic, mechanical, photocopying, recording or otherwise without either the prior written permission of the publisher or a licence permitting restricted copying issued in the UK by The Copyright Licensing Agency and in the USA by The Copyright Clearance Center. Any opinions expressed in the chapters are those of the authors. Whilst Emerald makes every effort to ensure the quality and accuracy of its content, Emerald makes no representation implied or otherwise, as to the chapters’ suitability and application and disclaims any warranties, express or implied, to their use.

British Library Cataloguing in Publication Data

A catalogue record for this book is available from the British Library

ISBN: 978-1-78769-312-8 (Print)

ISBN: 978-1-78769-311-1 (Online)

ISBN: 978-1-78769-313-5 (Epub)

ISSN: 2398-6018 (Series)

Contents

About the Editors

Anne Good is an independent Sociologist, Researcher, and Writer with long personal experience of disability and a keen interest in social justice and equality. Prior to her retirement from public service in 2015, Anne had extensive professional experience in disability research and data collection from 1981 onwards, especially in the period 2001–2015. During those years, she worked with the Irish National Disability Authority, the United Nations Washington City Group on Disability Statistics and the World Health Organisation. For the WHO, Anne served on its Functioning and Disability Reference Group including its working group on research ethics. For the NDA, she played a key role in the work which led to the first Irish National Disability Survey (2006) including its ethics dimension and also set up several research ethical guidance bodies including in the field of abuse of people with disabilities. Anne’s previous work included service in the European Commission, the National Women’s Council of Ireland and the Employment Equality Authority as well as lecturing in Malaysia, and in Trinity College Dublin and NUI Maynooth.

Iris Elliott has a career long involvement in disability rights in research, policy, public affairs, health promotion and social work; and was made a Fellow of the Royal Society of Arts in recognition of her ‘outstanding contribution and commitment to public mental health in the UK and Ireland’. She leads the Policy and Research Department in Ireland’s National Human Rights and Equality Institution, which is the designated CRPD Independent Monitoring Mechanism.

Sharon Mallon is a Senior Mental Health Lecturer at the University of Staffordshire. Until recently, she was a Co-convenor of the BSA Death, Dying and Bereavement Group. She was awarded her Ph.D. in 2010 for a qualitative study of young adults’ suicides from the perspective of their friends. Since then, her research interests have continued to focus on suicide prevention and postvention. She has a strong interest in the ethical impact of researching sensitive subjects. She has co-edited a special issue of The International Journal of Social Research Methodology exploring the ethical impact of sensitive research.

About the Contributors

Gary Allen has worked in the human research ethics area since 1997, working with a number of research institutions, state and federal departments, private companies and research ethics committees in Australia, Canada, the United Kingdom and Vietnam. Gary chaired the Committee that drafted the new Chapter 3.1 of the National Statement on Ethical Conduct in Human Research. He has a Degree in Education and a Professional Doctorate in Social Sciences. Gary lives with Progressive MS, is powered wheelchair mobile, is a passionate disability advocate and is the CEO of Enabled.vip (www.enabled.vip) a virtual business incubator for Australians with disability.

Chyrell D. Bellamy, Ph.D., MSW, is a Professor in Yale’s Department of Psychiatry and serves as the Director of Yale’s Program for Recovery and Community Health. Her research examines sociocultural experiences and pathways to wellness and recovery in prevention and treatment. She has received various federal and state grants for her work. In addition, she is the Co-founder and Director of the International Yale Lived Experience Transformational Leadership Academy (LET(s)Lead). She is a proud 2013 recipient of the Pearl Johnson Advocacy Award from the National Association for Rights Protection and Advocacy and, most recently, the Steve Harrington Award from the National Association of Peer Support (2021) and the 2023, inaugural Celia Brown Advocacy Award by the New York Association of Psychiatric Rehabilitation (NYAPRS).

Clarencetine (Teena) Brooks, LMSW, M.Phil., Ph.D. candidate/ABD, is a researcher, public health professional, advocate, and adjunct professor of social work. Her research interests include equity, trauma, and resilience. Her practice is informed by her lived experience and decades of advocacy work in the behavioural health system.

Celia Brown is a psychiatric survivor and long-time advocate for people with psychiatric disabilities. She is a Certified Peer Specialist in New York. Celia was instrumental in developing and implementing the Peer Specialist Civil Service title for the NYS Office of Mental Health. She is the Founder of Surviving Race: The Intersection of Injustice, Disability, and Human Rights. Celia has presented nationally and internationally on peer support, self-care, the history of the consumer movement, and cultural diversity. She worked as a Regional Advocacy Specialist for the NYS Office of Mental Health, Office of Consumer Affairs.

Bronagh Byrne is Co-Director of the Centre for Children’s Rights and Co-founder of the Disability Research Network. Bronagh’s research expertise lies in the implementation of international disability rights and children’s rights to national policy and practice with a particular focus on the application of the UN Convention on the Rights of the Child and the UN Convention on the Rights of Persons with Disabilities. She has particular expertise in the rights and experiences of disabled and d/Deaf children and young people, inclusive education, transitions, and disability theory. Bronagh has published in a range of journals including International Journal of Children’s Rights, Children and Society, International Journal of Inclusive Education and Disability and Society. She is on the Editorial Board of the International Journal of Disability and Social Justice.

Sheelagh Daniels-Mayes is a Gomeroi woman who lives with the disability of vision impairment. Sheelagh is a Lecturer in Indigenous Studies and Deputy Associate Dean, Diversity and Inclusion, Disability for the Faculty of Arts at The University of Melbourne. Increasingly, Sheelagh’s teaching, research and leadership focus has become that of First Nations people living with disability which she refers to as BlakAbility to reflect both the intersection of these two equity categories and to promote a strengths-based approach.

Jonathan P. Edwards, Ph.D. LCSW, ACSW, NYCPS, is a researcher, public health professional, adjunct professor of social work, and is integrally involved in peer support workforce implementation nationally. His personal and professional experience dealing with racism, homophobia, and disability-related stigma necessitates involvement with Surviving Race, a grassroots social justice community that advocates for the abatement of police violence towards BIPOC individuals and communities.

Jackie Gulland is a socio-legal researcher. Her research explores the ways in which social welfare law interacts with people’s understandings and experiences of their rights. Her research concerns how social welfare laws and policies affect people in relation to gender, disability, age and other inequalities. She has particular expertise in social security law and in the real world of social care. Her award winning research monograph Gender, Work and Social Control: A Century of Disability Benefits was based on research funded through a Leverhulme Trust Early Career Fellowship. This book won the Social Policy Association Richard Titmuss Book Award 2020.

Alison Koslowski is Pro Provost (Equity & Inclusion) and Co-Director of the Thomas Coram Research Unit at UCL. At the time of the DRILL project, she was based in the Social Policy subject area at the University of Edinburgh. Her research focuses on policies and practices that can reduce gender inequalities, promote greater work-family balance, and improve family well-being. She has lived experience of disability and was a founder trustee of the charity Edinburgh Limb Loss Association (ELLA).

Jennifer H. Madans is a Senior Associate with the Center for Inclusive Policy where she works on improving the quality and relevance of disability data worldwide and until recently the Associate Director for Science at the National Center for Health Statistics in the US. She is a Founding Member and Chair of the Washington Group on Disability Statistics.

Damian Mellifont is a Lived Experience Postdoctoral Fellow and leads and contributes to studies that advance the economic and social inclusion of people with disability. Damian is a member of the Centre for Disability Research and Policy (CDRP) leadership team at The University of Sydney. With over 30 peer-reviewed publications, Damian has been an active member of the Centre over the last decade, with extensive prior experience in government. Damian strongly advocates for the disability inclusion mantra of, ‘Nothing About Us Without Us’ to be consistently applied to research about disability.

Dr Daniel Mont is the CEO and Co-founder of the Center for Inclusive Policy (CIP). He has published widely on disability data and inclusive policy, and worked with many UN agencies and governments on the development, implementation and monitoring and evaluation of those policies. Prior to CIP, Mont was a Senior Economist at the World Bank, the Director of the Workers’ Compensation Project at the National Academy of Social Insurance, a Principal Analyst at the US Congressional Budget Office, and an Assistant Professor at Cornell University. He has worked for many years with the Washington Group on Disability Statistics and chaired their analytical and labour statistics working groups. He has a Ph.D. in Economics from the University of Wisconsin-Madison and a B.A. from Swarthmore College.

Mary-Ann O'Donovan is Associate Professor of Disability Studies in the University of Sydney and Executive Director of the Centre for Disability Studies, a Research Affiliate of the University. Mary-Ann has a breadth of research experience involving the management of national disability databases, analysis of large datasets, qualitative research, and policy content analysis. Mary-Ann has a particular interest in housing for people with intellectual disability including de-institutionalisation, housing mobility and housing stability, homelessness, choice and impact of housing and where one lives on health and health service utilisation.

Kathleen O’Hara, Ph.D., MSW, has worked at the intersection of mental health, health, and housing research for over a decade. Her service user-centred work involves participatory approaches to translate research into legal and rights-based advocacy among people with psychiatric disabilities. She presently serves in the Office of the Independent Reviewer for O’Toole v. Cuomo, monitoring New York State’s efforts to increase socially integrated housing under the Americans with Disabilities Act. She is also an Instructor at the Columbia University School of Social Work.

Peter Scott is now retired, but at the time of writing he was Senior Lecturer at the University of Portsmouth where he was Chair of the Business and Law Faculty Ethics Committee. His research interests included disability and employment and the politics of employment relations. He currently still teaches part-time at the University of Birmingham and the University of Portsmouth.

Jennifer Smith-Merry is Professor of Health and Social Policy and Australian Research Council Industry Laureate Fellow (2023–2028) in the University of Sydney School of Health Sciences. Jen is Director of the Centre for Disability Research and Policy, a multi-disciplinary centre whose mission is to make life better for people with disability by translating research to policy and practice. Her research focuses on disability and mental health policy, particularly in relation to the National Disability Insurance Scheme. She works closely with people with lived experience of disability and has a strong interest in critical theoretical approaches to policy analysis.

Annmaree Watharow is a Lived Experience Research Fellow at the Centre for Disability Research and Policy at the University of Sydney. She has written many academic articles and chapters on disability and living with disability and has recently completed a Masters Arts (Creative Writing). Annmaree’s first book was published in February: Knowing What Is Going on: Improving the Health Care Experiences of People Living with Sensory Disabilities. Her first play is Harm’s Way, which is based on lived experience testimonies. Her interests include: promoting epistemic justice; supporting older people with sensory impairments and broadening accessibility and inclusion within qualitative methods.

Acknowledgement

In developing this book we have had the support and assistance of a good many people. Our thanks go in particular to those who provided helpful comments in the peer review process- their contributions added great value to each of the chapters.

We also wish to thank Sarah Fitzgerald who provided a great deal of early editorial support in shaping the writing.

Finally, we wish to note that this collection contains the last publication by Celia Brown who sadly passed away during the books production process.