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Deinstitutionalization And People With Intellectual DisabilitiesReview - Deinstitutionalization And People With Intellectual Disabilities
In And Out Of Institutions
by Kelley Johnson and Rannveig Trausdóttir (Editors)
Jessica Kingsley , 2005
Review by Christine James, Ph.D.
Mar 27th 2007 (Volume 11, Issue 13)

The past five years have seen a reinvigoration of scholarship on disability.  Deinstitutionalization and People with Intellectual Disabilities is an especially welcome contribution to the literature.  Almost every one of the chapters includes first-person narratives written by disabled persons.  These unflinching autobiographical accounts of the lives of disabled persons have been lacking in other books on disability.  In this text, the autobiographical accounts give voice to those who have not had a chance to speak previously.  For the reader, the accounts give an honest, candid, humanizing framework, which ground the theoretical and practical policy recommendations provided in the book.

Johnson and Trausdóttir begin with a careful discussion of their process in writing the book, a process that was financed by a variety of international institutions, universities, as well as international government funding.  These include the University of Iceland, the Royal Melbourne Institute of Technology University, the Social History of Learning Disability Group at the Open University, and the Research and Training Center on Community Living at the University of Minnesota, supported by the US Department of Education's Special Education and Rehabilitative Services National Institute on Disability and Rehabilitation Research (NIDRR).  Johnson is Australian and Trausdóttir is Icelandic, and a variety of the first-person narratives in the text were written as collaborative projects in either Iceland or Australia over the last 20 years.  The editors' compassion and care with each author is clear, in many instances, one of the editors worked with the author, getting to know them over years, and assisting in the typing and transcribing of their life story.  As readers become familiar with the variety of institutional contexts described, they will note the persistent, endemic problems of institutionalization that are common from one country to another. 

The first six chapters provide vivid discussions of life in institutional settings.  The institutions are described honestly by those who lived and worked in them.  In some cases, a Hobbesian state of nature is described in which the disabled person's life appears to be nasty and brutish.  In others, there are sympathetic caregivers who make a special effort to reach out to institutionalized children whose families gave them up unwillingly, or whose family doctor unwittingly advised their parents to give up a child whose behavior transgressed boundaries deemed acceptable, or who had "fits" that were poorly understood when they were children.  In the cases of institutionalized children from the 1940's, writing about their life history in the 1980s-1990s, their memories provide an invaluable documentation of the moves toward disabled persons' rights that began in the late 1960s.  One of the individuals is a man who had been institutionalized since childhood, and who proceeded to successfully make the case to leave the institution he had lived in as an adult and move to an assisted living apartment at the age of 70.  His chapter, the seventh, is appropriately titled "It's Never Too Late."  The amount of courage and gumption such a move takes is indescribable.  These are the kinds of individuals that anyone should be honored to know.

While these first-person narratives are the first strength of the text, it is also rich in theoretical and practical information.  One example is the discussion of the LRE (least restrictive environment) continuum concept, in chapter 6 by Steven Taylor.  The least restrictive environment continuum came to prominence in the late 1960's and early 1970's.  On the face of it, the continuum appears to be a process by which institutionalized disabled persons could progressive move from the most restrictive environment to the least restrictive environment, as they were ready.  Like Plato's Divided Line and Allegory of the Cave, the continuum was meant to give a patient a set of goals, and it was meant to give society a methodology and a motivation to provided the needed services for a variety of types of disability.  The chapter carefully argues that while there was a time when such a motivating scheme was needed, the continuum itself was too simplistic.  For example, the continuum was often used to conflate assistance, and assisted living, with restriction and segregation from the mainstream population: "Implicit in the concept is the assumption that the least restrictive, most integrated settings will not provide the intensive services needed by people with severe disabilities."  (pp. 98)  Two other serious problems with the LRE continuum is that it assumes that the basic human rights of disabled persons can be sanctioned, it merely provides varying levels of how much they should be sanctioned (pp. 99), and that the LRE continuum focused too much on physical settings and types of institutions, rather than on the community services and support programs needed for disabled persons to live and work successfully as members of communities. (pp. 100)

The text is also to be applauded for looking at the positive, and negative, results of social integration and deinstitutionalization.  For example, on pages 214-215, the first generation of integrated disabled persons in Sweden, is discussed in detail.  Beginning with legislative public health reforms in the 1960's and 1970's, opportunities for contact with "normal" people were few and far between.  The sense of loneliness and isolation is portrayed clearly and realistically.  "One might have assumed that people with intellectual disabilities would give up in their attempts at participating in society on the same terms as everyone else as a result of their disability and negative experiences of social exclusion.  Instead, many people with intellectual disabilities have developed an image of themselves as normal human beings with certain weaknesses or problems.  In their perception, such difficulties mean only that it is sometimes hard for them to meet high performance demands and because of this they have the right to support from those around them." (pp 215)  Although the ongoing process of social integration has had positive effects for many individuals with disabilities, the text includes examples of those for whom deinstitutionalization brought its own set of problems.  For example, Claes from Helsingborg, a young man with a mild intellectual disability, wanted to meet girls and go to parties as any young man might.  Because his disability was not visible or noticeable during a first meeting, he would often meet girls and become friendly with them.  But after a while, the girls' behavior towards him would change as they realized he "seemed different."  To deal with the situation, Claes would often use alcohol to either cover his disability, to deal with his own emotional pain, or just to fit in.  Claes' alcoholism soon became serious, and limited his ability to find work and a happy home life.  He eventually ended up in prison.

Another example of the difficulty in assuming that deinstitutionalization is right for all disabled persons is from New Zealand.  Haki, a Maori man who had been living in a Maori-developed service for most of his life, found deinstitutionalization to be a loss of his community and sense of self.  In the Maori context, he was calm, and would be seated with the elders of his tribe for ceremonies.  His deinstitutionalization, to suburban New Zealand, among the European population, caused him great distress, all of which was remedied by his return to the Maori-designed institution: "I have a vivid memory of his return to the institution, his near-empty ward, and his joy at walking out into a concrete-paved area and sitting in a broken-down chair, his chair of many years… this was his home, and regardless of its degradation, it was where he wanted to be.  As I said goodbye I did have a sense that he did not share my sadness.  He had stopped wailing." (pp 233)  In Haki's case, reconnecting with his own local community (marae), and living in an atmosphere that was committed to Maori principles (tikanga), made all the difference.  This stands as a significant reminder that cultural context, community, and a sense of belonging matter to disabled persons.

Deinstitutionalization and People with Intellectual Disabilities is an excellent introduction to the history of disability rights, the last forty years of changes in disabled persons services, and the current theories of deinstitutionalization in a number of different countries.  The personal narratives and autobiographies of the disabled persons, and of those who work with them, are poignant.  Each one gives insight into the disabled person as a "whole person", a person whose voice would have been lost in other texts that focus too much on legislation, public policy, or theory.  Perhaps the greatest contribution of the text is the fact that it puts an honest human face on disability: it does not assume that all institutionalization is bad or good, and it does not oversimplify or romanticize the lives of those with disabilities.  What it does is ask us to look at persons with disability in a new and compassionate light, compassionate in the best sense of "fellow feeling".  The narratives of Haki and his need for his own culture, and of Claes and his frailty and his need to be loved, give us all a new insight into disabled persons and their humanity.  Used in the right context, perhaps in combination with other texts on disability, the book can be used as inspiration for better policy decisions and better planning for deinstitutionalization.  When it comes to human dignity and the need to connect with others, whether we are disabled or not, we are all more alike than we may have realized. 

Some texts which I would recommend in combination with Deinstitutionalization and People with Disabilities:

Quality of Life and Human Difference: Genetic Testing, Health Care, and Disability, by David Wasserman, Jerome Bickenbach, Robert Wachbroit; Cambridge University Press, 2005. (A text providing specific information on the theoretical schemes used in assessing the quality of life of persons with disabilities, including special emphasis on the important role of community relationships in raising the "Health-Related Quality of Life" or HRQL quantifiable measurements of persons with disabilities.)

Health and Human Rights: Basic International Documents, by Stephen P.Marks, FXB Center for Health and Human Rights; 2nd edition, 2006. (This book brings together a wealth of international policy statements and international human rights laws, including specific sections on disabilities, older persons, displaced persons, refugees, patient's rights, rights to adequate housing, and rights to education. Documentation provided is as recent as 2004, and as early as 1948.)

Foucault and the Government of Disability (Corporealities: Discourses of Disability) (Hardcover) by Shelley Lynn Tremain (Editor), University of Michigan Press, 2005.  (A collection of scholarly writings from the perspective of continental philosophy, including readings on embodiment and disability, legislation, mobility, power, and critique of assumptions of normalcy.)

Art, Science and Art Therapy: Repainting the Picture (Paperback) by Frances Kaplan (Author), Jessica Kingsley Publishers, 2000. (Although focused primarily on the psychological benefits of art therapy, the potential for self-expression through art is relevant to the life stories provided in Deinstitutionalization and People with Disabilities. The type of art therapy discussed would have been a type of therapy unavailable to those living in the institutions described by Johnson and Traustadóttir.

Social Injustice and Public Health by Marian Wright Edelman (Foreword), Barry S. Levy (Editor), Victor W. Sidel (Editor), Oxford University Press, USA, 2005.  (Text includes a careful analysis of how disability connects with poverty, access to medical care and access to education.  The book provides international data, with a current analysis of the United States, the United Kingdom, and developing countries with individuals suffering disabilities as a result of land mines.  Current statistics are provided: approximately 10 percent of the world population has some disability, and 80 percent of those with disabilities live in developing countries.)

Public Health, Ethics, and Equity (Paperback) by Sudhir Anand (Editor), Fabienne Peter (Editor), Amartya Sen (Editor), Oxford University Press, USA; New Ed edition, 2006.  (Written by professors in economics and philosophy, this text provides a clear look at the concept of health equity and what it might take to achieve it.  Further discussion of Health Related Quality of Life studies, and discussion of the DALY or Disability Adjusted Life Year, are included.  If you enjoy statistics relating to public health policies and their outcomes, this is a very worthwhile book: information is expressed in prose, as well as bar graphs, and functions with normalization constants.  Although this text prefers quantitative analysis over the quantitative narratives and autobiographies featured by Johnson and Traustadóttir, the two books could be used together to provide complimentary yin-yang arguments.)

 Public Health Law and Ethics: A Reader (California, Milbank Books on Health and the Public, 4), by Lawrence Gostin (Editor), University of California Press, 2002. (A text which provides a series of case studies in public health, with specific court case references, including some discussion of persons with disabilities and their treatment in the history of the public health system of the United States.)

© 2007 Christine James

Christine James, Ph.D., Philosophy and Religious Studies at Valdosta State University


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