This international collection of personal and professional perspectives takes a fresh look at deinstitutionalization. It addresses the key steps towards deinstitutionalization as they have been experienced by people with intellectual disabilities: living inside total institutions, moving out, living in the community and moving on to new forms of both institutionalization and community life.
Many of the chapters are contributions from people with intellectual disabilities. They are based on a life history approach and give a unique personal account of the lived experiences of institutional life and deinstitutionalization by the people who were subject to it. The life story of Tom Allen (1912-1991) is interspersed throughout the book, providing a powerful testimony of the way institutions and deinstitutionalization have affected one individual over the course of almost a century.
Researchers and practitioners will find this book an insightful and accessible reflection on deinstitutionalization, and a source of encouragement for improving the lives of people with intellectual disabilities.
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Acknowledgements. Introduction: In and out of institutions, Rannveig Traustadóttir, Iceland, and Kelley Johnson, Australia. Part I. Living Inside. 1. Sixty Years in the Institution. Thomas F. Allen with Rannveig Traustadóttir and Lisa Spina, USA. 2. Institutionalization: A Historical Perspective, Jan Walmsley, UK. 3. Containing Uncontainable Women, Kelley Johnson. 4. Institutional Death: The Coronial Inquest into the Deaths of Nine Men with Intellectual Disabilities. Ian Freckelton, Australia. 5. I’ve Been in Hospital All My Life, Avis Hunter with Brigit Mirfin-Veitch, New Zealand. 6. The Institutions Are Dying, but Are Not Dead Yet. Steven J. Taylor, USA. Part II. Moving Out. 7. It’s Never Too Late, Thomas F. Allen with Rannveig Traustadóttir and Lisa Spina. 8. The Impact of Policy Tensions and Organizational Demands on the Process of Moving Out of an Institution, Christine Bigby, Australia. 9. The Cost of Moving Out. Ingiborg Eide Geirsdóttir with Gudrún V. Stefánsdóttir, Iceland. 10. Rowan’s Choices, Ethel M. Temby, Australia. 11. Moving Out: A Reflection, Kelley Johnson. Part III. Living Outside. 12. In the Community. Thomas F. Allen with Rannveig Traustadóttir and Lisa M. Spina. 13 `I’ve got my Freedom Now’: Memories of Transitions Into and Out of Institutions, 1932 to the Present Day, Victor Hall with Sheena Rolph, UK. 14. `Gone Fishin”: From Institutional Outing to Real Life. Emil Johansen with Kristjana Kristiansen, Norway. 15. `Lady of the Well’: Memories of Vicki, Jen Devers. 16. Reflections on Living Outside: Continuity and Change in the Life of `Outsiders’. Jan Tøssebro, Norway. Part IV. Moving On. 17. A New Life, Thomas F. Allen with Rannveig Traustadóttir and Lisa Spina. 18. Conquering Life: The Experiences of the First Integrated Generation, Magnus Tideman, Sweden. 19. New Forms of Institutionalization in the Community, Julian Gardner and Louise Glanville, Australia. 20. Returning to One’s Roots: Haki Titori’s story, Patricia O’Brien, New Zealand. 21. Becoming Contractual: The Development of Contracts and Social Care Markets in England, Paul Cambridge, UK. 22. The Dignity of Risk: My Son’s Home and Adult Life, Dóra S. Bjarnason, Iceland. 23. Out of the Institution Trap, John O’Brien, USA. Epilogue to Tom Allen’s Life Story. Contributors. Subject Index. Author Index.
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Kelley Johnson is Professor of Disability, Policy and Practice at the University of Bristol, and Director of the Norah Fry Research Centre.