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Disabled People and the Independent Living Counter-Narrative in Wales

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Disabled People and the Independent Living Counter-Narrative in Wales When Resistance Meets Law and Policy: Disabled People and the Independent Living Counter-Narrative in Wales Alison Tarrant Cardiff School of Law and Politics Cardiff University August 2019 This thesis is submitted in partial fulfilment of the requirements for the degree of Doctor of Philosophy. 1 2 Declarations This work has not been submitted in substance for any other degree or award at this or any other university or place of learning, nor is being submitted concurrently in candidature for any degree or other award. Signed Alison Tarrant (candidate) Date 5 August 2019 STATEMENT 1 This thesis is being submitted in partial fulfillment of the requirements for the degree of PhD. Signed Alison Tarrant (candidate) Date 5 August 2019 STATEMENT 2 This thesis is the result of my own independent work/investigation, except where otherwise stated, and the thesis has not been edited by a third party beyond what is permitted by Cardiff University’s Policy on the Use of Third Party Editors by Research Degree Students. Other sources are acknowledged by explicit references. The views expressed are my own. Signed Alison Tarrant (candidate) Date 5 August 2019 STATEMENT 3 I hereby give consent for my thesis, if accepted, to be available online in the University’s Open Access repository and for inter-library loan, and for the title and summary to be made available to outside organisations. Signed Alison Tarrant (candidate) Date 5 August 2019 STATEMENT 4: PREVIOUSLY APPROVED BAR ON ACCESS I hereby give consent for my thesis, if accepted, to be available online in the University’s Open Access repository and for inter-library loans after expiry of a bar on access previously approved by the Academic Standards & Quality Committee. Signed Alison Tarrant (candidate) Date 5 August 2019 3 4 This thesis is dedicated to my father, whose dearest wish was to see it completed. 5 6 Acknowledgments My thanks are due to very many people for their support in completing this thesis. I cannot list everyone here, but I owe particular debts of gratitude to the following. First and foremost, to my supervisors, Professor Luke Clements, Dr Rachel Cahill O’Callaghan, Professor Dan Wincott and Dr Lucy Series, for their invaluable knowledge, experience, inspiration and assistance. Each has played an important part, and I am indebted to all, but I feel I must thank Dan and Lucy in particular for their patience, tact, wisdom and input over the final two difficult but rewarding years and for steering me to submission. I am deeply grateful also to the ESRC for funding the project. There are many others in Cardiff Law School who have freely and generously offered their advice, support and time. Huge thanks are due to Professor Annette Morris, Dr Emily Kakoullis, Professor Jo Hunt, Dr Lydia Hayes and Dr Camilla Parker. And a real vote of thanks also to the PGR administrative team – Sharron Alldred, Abby Jesnick, Lydia Taylor and Sarah Kennedy – who have always been available to assist and advise. Companion travellers on the PhD journey have kept me going more times than I care to remember. Listing everyone is impossible here, but particular thanks to my fellow troglodytes – Dr Katie Richards, Dr Kathy Griffiths, Derek Tilley, Dr Steffan Evans and Chen Zhang, and to Dr Sophie Chambers and Dr Julie Latchem for companionship in good times and bad, humour, laughter, advice, and understanding. And finally – thanks to my family who always understood why I wanted to take this on and who have helped me through with unwavering loyalty. In particular, I owe more than I can express to Sam, who has supported me emotionally, academically and financially, with endless patience and generosity. It’s no exaggeration to say that I would not have got to submission without him. 7 8 Abstract This thesis studies independent living as a counter-narrative of identity reconstruction devised by the disabled people’s movement to resist dominant social narratives of otherness, deficit, dependency and ‘care’. In particular it examines what happens to that counter-narrative when disabled activists have attempted to insert it into policy and law. It considers whether the counter-narrative can remain intact in this context and the implications – for disabled people and the counter-narrative itself – of the model that is constructed in the policy and legislative context. The policy field selected for the study is adult social care in Wales, where there are emergent governance institutions and an expectation of third sector involvement in policy development. Using texts from the disabled people’s movement as data, the study identifies how independent living functions as a counter-narrative and whether there are distinctions between the model constructed by the disabled people’s movement in the UK as a whole, and by the movement in Wales. Core fragments of the counter- narrative are identified and traced through into Welsh Government policy and legal texts. An analytical framework of narrative relationships of ‘adjacency’ and ‘collision’ is developed to examine these fragments and establish their use in the policy and legislative contexts. The study finds that while the attempted incorporation of independent living into Welsh adult social care policy has been partially successful, it has not yet succeeded in overturning master narratives that enable and perpetuate the structural and internalised oppression of disabled people. Both colliding and adjacent ideas were intentionally and unintentionally neutralised in policy and legislation, allowing master narratives to thrive. This was a result of multiple factors, including the collision at a fundamental level of certain core fragments of independent living and the principles of Welsh Government public sector policy, misunderstandings, the loss of the element of resistance and the financial context of austerity, which is undermining not only the ability of the Welsh Government to respond to grassroots demands, but the Welsh Government’s own public sector values. However, the study finds that if these problems can be tackled, there is scope for independent living to feature effectively in Welsh policy and for distinct approaches to it to be developed. 9 10 List of Abbreviations ADL Anti-Discrimination Legislation BCODP The British Council of Organisations of Disabled People CIL Centre for Independent Living DAN Direct Action Network DCDP Derbyshire Coalition of Disabled People DCIL Derbyshire Centre for Integrated Living DRC Disability Rights Commission DPM Disabled people’s Movement DPO Disabled people’s organisation EHRC Equality and Human Rights Commission ENIL European Network on Independent Living HCIL Hampshire Centre for Independent Living ILF Independent Living Fund NCIL National Centre for Independent Living ROFA Reclaiming Our Futures Alliance UN United Nations UNCRC United Nations Convention on the Rights of the Child UNCRPD United Nations Convention on the Rights of Persons with Disabilities UPIAS The Union of the Physically Impaired Against Segregation WCVA Wales Council for Voluntary Action WAG Welsh Assembly Government WG Welsh Government VSPC Voluntary Sector Partnership Council 11 12 Contents Declarations ............................................................................................................... 3 Acknowledgments ...................................................................................................... 7 Abstract ...................................................................................................................... 9 List of Abbreviations ................................................................................................. 11 Part I: Background and Contexts ............................................................................. 21 Chapter 1: Introduction ............................................................................................. 23 1. Introduction: Independent living ........................................................................ 23 2. The origin and purpose of this thesis ................................................................ 24 3. The theoretical framework ................................................................................ 27 4. A case study of independent living in adult social care policy in Wales ............ 28 5. The research questions and an outline of the thesis ......................................... 30 6. Terminology ...................................................................................................... 33 Chapter 2: Contexts – The disabled people’s movement and independent living in the UK ...................................................................................................................... 35 1. Introduction ....................................................................................................... 35 2. The disabled people’s movement in the UK ..................................................... 35 3. The social model of disability ............................................................................ 41 4. The development of independent living in the UK............................................. 45 5. The connection between independent living and the social model ................... 64 6. Conclusion ........................................................................................................ 67 Chapter 3: Contexts – Devolved Wales.................................................................... 69 1. Introduction ......................................................................................................
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