The Disability Movement and its History

What is important in the disability experience is knowing that you are not alone. There are thousands of persons with disabilities thinking similar thoughts, having similar experiences, and getting angry. We are not alone. We have a history.

Joe Shapiro's recently published work No Pity: People with Disabilities Forging a New Civil Rights Movement (1993) is an attempt to share knowledge about the disability experience, now and in the past. He describes events in the disability movement over the last twenty years, but it is not a true history of the movement. While it is a good introduction, Shapiro makes two serious errors in his book. First, he assumes that the disability rights movement began in California in 1972 seemingly unaware of the work done by people in Texas, Illinois, Florida, Massachusetts, and elsewhere (including California) many years before 1972. Second, he makes the statement that the disability rights mind set "would not flower until" the ADA as if Section 504 of the Rehabilitation Act of 1973 never existed. He repeats that misconception throughout the book.

Shapiro also leaves out far too many significant events, like the 1977 White House Conference on Handicapped Individuals. However, a good amount of the Shapiro book provides good information on disability and the problems faced by persons with disabilities. Until a work comes along with a true historical perspective, Shapiro's is the best history available for some knowledge of the achievements (and defeats) of the disability movement. There are other sources to which we can turn.

A work of limited historical use, but which was one of the earliest attempts to present the story of disability in the US is John Lenihan's "Disabled Americans: A History" in Performance, November and December 1976, January 1977. It mainly discusses income support policies and super-crips, but it is a start. Paul Longmore, who is an historian, published "Uncovering the Hidden History of People with Disabilities," in Reviews in American History, 1987, pages 355-64, which is a call for writing the history of the disability movement. In the article he reviews three works worth reading: Hugh Gregory Gallagher's FDR's Splendid Deception (1985), Harlan Lane's When the Mind Hears: A History of the Deaf (1984), and Peter L. Tyor and Leland V. Bell's Caring for the Retarded in America: A History (1984).

Other specialized histories can be found. For example, Ronald Wiegerink and John Pelosi edited Developmental Disabilities (1979) which is a summary history up to the late 1970s of the national movement on behalf of persons with developmental disabilities. R.C. Scheerenberger's A History of Mental Retardation (two volumes, 1983 and 1987) does the same for persons labelled mentally retarded.

An excellent work by J.David Smith, Minds Made Feeble (1985) presents the devastating impact which the Eugenics Movement had upon persons with disabilities. In one sense it can be argued that eugenics caused the rise of the disability movement in reaction to it.

Richard Scotch, in two articles, "Disability as the Basis for a Social Movement," in The Journal of Social Issues, Spring 1988, pages 159-72, and "Politics and Policy in the History of the Disability Rights Movement," Milbank Quarterly, 1989, Supplement 2, Part 2, pages 380-400, traces the concern for rights in the disability movement from the 1960s through the 1980s. His book From Good Will to Civil Rights (1985) describes the actions surrounding the passage of the Rehabilitation Act of 1973 which contains Section 504. He concludes that the process marked the coming of age of the disability rights movement.

Margaret Winzer, The History of Special Education (1993) discusses changes in people's views on special education from the eighteenth century onwards. Tom Bethell's "Wheelchair Justice," Washington Monthly, June 1976, pages 51-58, is an early account of the disability rights movement. Diane Driedger, The Last Civil Rights Movement (1989) traces the history of the Disabled Peoples' International. Since disabled US citizens did not qualify for the assistance available to participate in the DPI's world congresses and most could not afford nor could raise the funds to do so, virtually all US groups and individuals are left out of the story. She also assumes that disability groups arose only after 1945. But she does include the little known loosing fight of the DPI against the World Health Organization's patronizing and incorrect definition of disability.

Edward Berkowitz presents a history of income maintenance programs (workers' compensation and SSDI) and the attempted corrective response (vocational rehabilitation and independent living) in Disabled Policy (1987). Robert Bogdan, Freak Show (1988) is a history for the years 1840-1940 of "freak shows." Some of the people with disabilities in the shows not only had no other way of making a living and actually preferred it to alternatives.

Frank Bowe's autobiographical account of some of the major accomplishments of the disability movement during the 1970s and 1980s, Changing the Rules (1986) presents interesting insights into events which Shapiro, for example, largely misses. Two other works by Frank Bowe, Handicapping America (1978) and Rehabilitating America (1980) discuss the problems faced by disabled persons and attempts to resolve them.

In order to understand the disability movement a person has to understand the disability experience. Irving Kenneth Zola's Missing Pieces (1982) contributes a great deal to the intellectual framework needed to understand disabled people and their experiences. Zola originated the idea that disability is a socially constructed concept. Sonny Kleinfield's The Hidden Minority (1979) is a sometimes insightful, but too often paternalistic, book discussing disability issues as found in the lives of a number of disabled persons.

A work which covers most topics of concern to persons with disabilities is Myron Eisenberg, Cynthia Griggins, and Richard Duval (editors), Disabled People as Second-Class Citizens (1982). It includes topics such as transportation, access, sex, employment, health care, attitudes, and advocacy.

A description of the implementation struggles of the civil rights laws for persons with disabilities before the ADA can be found in Stephen Percy's Disability, Civil Rights, and Public Policy (1989). A history of the passage of the ADA and an interpretation of the law is found in Implementing the Americans with Disabilities Act edited by Lawrence Gostin and Henry Beyer (1993). A brief work which explains the ADA and how to comply in an inexpensive manner is Mary Johnson (editor), People with Disabilities Explain It All for You (1992).

Two books which discuss the way that disability magnifies the effects of sexism on women and the way that disability changes relations of disabled women with men and with other women are M.J. Deegan and N.A. Brooks (editors), Women and Disability: The Double Handicap (1985) and Michelle Fine and Adrienne Asch (editors), Women with Disabilities (1988). The book edited by Marsha Saxton and Florence Howe, With Wings: An Anthology of Literature by and About Women with Disabilities (1987) contains expressions by women with disabilities about their life and about disability.

The classic description of the basis of independent living is Gerben DeJong, "Defining and Implementing the Independent Living Concept" in Independent Living for Physically Disabled People edited by Nancy M. Crewe, Irving Kenneth Zola, and others (1983, chapter 1). It is a description of the origins of the independent living movement and its relationship to the movements for civil rights, consumerism, self-help, and self-care. The medical model of disability is analyzed and rejected by DeJong. Gareth Williams, "The Movement for Independent Living: An Evaluation and Critique," Social Science and Medicine, 1983, pages 1003-10, criticizes the independent living model as set forth by DeJong as too readily accepting a "free market" perspective.

In order to understand the role which the disability movement must play in the current debate over health care reform, there is Sara Watson, "An Alliance at Risk: The Disability Movement and Health Care Reform," in The American Prospect, Winter 1993, pages 60-67.

People with disabilities must also participate in the contemporary discussions of issues in the disability movement. To keep current with them read Mainstream, the Disability Rag, The Mouth, and three academic journals on disability issues and policy: Disability and Society which comes out of England (and just changed its name), the Disability Studies Quarterly which Irving Zola edits and publishes from Brandeis University, [editorial note: now edited by David Pfeiffer at the University of Hawaii at Manoa] and the Journal of Disability Policy Studies which Kay Schriener edits out of the University of Arkansas.