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Community Organizing: Fanning the Flame of Democracy

Disability Rights Movement

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By the most inclusive count, 43 million Americans (17 percent of the population) has some form of disability -- a large potential constituency.  But this constituency has long been fragmented by types of disabilities, which result in different impairments and needs -- as is evident by comparing blindness, deafness, cerebral palsy, spinal injury, diabetes, cancer, heart disease, AIDS, mental illness, or mental retardation.  Each disability has had its own advocacy group (the blind have two rival groups), often run for the group by professional social service administrators, not by the group members themselves.

Disability policy.  As Edward Berkowitz shows in Disabled Policy, the United States has taken two often contradictory approaches to people with disabilities -- income maintenance programs (including workers' compensation and disability insurance) and corrective programs (including rehabilitation, independent living, and civil rights/accessibility laws).  Workers' compensation programs, pioneered by the states of Wisconsin and New Jersey in 1911, were designed to move the control over the treatment of injured workers from the courts to state governments.  By 1948 workers' compensation laws had been enacted in all states.  As workers' compensation only covered people injured by accidents in the workplace, many people whose disabilities had other causes were left uncovered.

The Social Security Act was amended in 1950 to create a new welfare category for the totally and permanently disabled, and again in 1956 to include the Disability Insurance program (the "D" in OASDI) for total and permanent disabilities.  The 1972 Social Security amendments created the Supplemental Security Income program to replace the state-run welfare programs for the blind, elderly, and totally and permanently disabled (leaving only Aid to Families with Dependent Children -- AFDC -- as a federal "welfare" program).  In contrast to the income maintenance programs, corrective programs are designed to enable people with disabilities to work in the regular economy and live independently.  The federal vocational rehabilitation program has operated since 1920 to provide services and training to return disabled people to work.

Disability Rights.  As a concept, disability rights cuts across the fragmented field of associations covering single mental and physical disabilities.   The idea of a "cross-disability coalition" began to take form with the independent living movement.  Led by the Center for Independent Living (CIL) in Berkeley, incorporated in 1972 by Ed Roberts and other students at the University of California who had lived together in a residence program at the University's Cowell Hospital.  Joined by New York teacher Judy Heumann, who like Roberts is post-polio, CIL established an off-campus service center and movement headquarters.  Robert later became California's director of rehabilitation services under Governor Jerry Brown.

The movement was sparked primarily by people with mobility problems who use wheelchairs -- as a result of polio, spinal injuries, or cerebral palsy.  There has been relatively less joint work with organizations of or for the blind, deaf, and mentally retarded.  Nevertheless, equal access to education, employment, transportation, health care, and attendant services have been unifying themes.  And victories for one group are celebrated by all; disability activists everywhere cheered as deaf students at Gallaudet University in Washington, DC, received national attention for their successful "Deaf President Now" campaign in 1988.

The civil rights revolution for the disabled began with the 1973 amendments to the Vocational Rehabilitation Act.  Although similar language was included in the 1964 Civil Rights Act and the 1972 Education Amendments Act, the new wave of disability activism began with efforts to implement Section 504 of the 1973 amendments, which banned discrimination against any qualified handicapped individual in any program receiving federal financial assistance.  As federal officials delayed issuing regulations, a lobbying umbrella called the American Coalition of Citizens with Disabilities pushed for a strong compliance and enforcement program, setting a deadline in April 1977 for action.

Berkeley CIL organized a "504 coalition" in the San Francisco Bay Area, and 300 disabled people demonstrated in Washington at the office of Health, Education and Welfare (HEW) secretary Joseph Califano.  Demonstrators in Washington, Denver, San Francisco and Los Angeles held sit-ins at HEW offices.  Califano issued the section 504 regulations, and the next year in 1978 amendments to the vocational rehabilitation act provided funds for centers for independent living throughout the country.  The Education of the Handicapped Act of 1975 required the "free appropriate public education of all handicapped children."

The most recent significant victory for the movement is the Americans with Disabilities Act of 1990, which extends the protections of Title V of the Vocational Rehabilitation Act of 1973 to the private sector, requiring access and forbidding discrimination in public accommodations.  Employers of 15 or more workers cannot discriminate against the disabled, and must make "reasonable accommodation" to their disabilities.

The NAACP Legal Defense Fund provided a model for the Disability Rights Education and Defense Fund (DREDF) organized in Berkeley in 1979 to secure enforcement of laws and regulations on the books.  The movement has a think tank, World Institute on Disabilities, founded by Ed Roberts and Judy Heumann in 1983.  ADAPT, organized in 1982 by an informal group of independent living centers, has been the direct action arm of the movement, conducting numerous demonstrations, blockades and sit-ins to secure enforcement of civil rights.  The National Council on Independent Living (NCIL) represents independent living centers.  The spirit of the movement has impacted such traditional organizations as the United Cerebral Palsy Association, which has become an important center of policy analysis and advocacy for the disability movement.

Annotated Bibliography

Disability Rights:  For a historical view, see Edward D. Berkowitz, Disabled Policy: America's Programs for the Handicapped (Cambridge Univ. Press, 1987).  Early activism is reviewed in Roberta Ann Johnson, "Mobilizing the Disabled," Ch. 5 in Social Movements of the Sixties and Seventies, edited by Jo Freeman (Longman, 1983).  A more complete history is Joseph P. Shapiro, No Pity: People with Disabilities Forging a New Civil Rights Movement (Times Books, 1993).

For a collection of insightful essays, see professor and disability activist Paul K. Longmore, Why I Burned My Book and other Essays on Disability (Temple Univ. Press, 2003); Longmore and Laurie Umansky edited The New Disability History: American Perspectives (New York Univ. Press, 2001).  For an insider's look at the experience of disability, see Irving Kenneth Zola, Missing Pieces: A Chronicle of Living with a Disability (Temple Univ. Press, 1982); and Harriet McBryde Johnson, Too Late to Die Young: Nearly True Tales from a Life (Henry Holt, 2005).  For a small encyclopedia, see Fred Pelka, The ABC Clio Companion to the Disability Rights Movement (ABC-Clio, 1997).