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COMMENTARY:Revelations:Throughout the 1940s, ‘50s and early ‘60s, voluntary agencies, or charities, and the pity industry dominated the disability scene. Their goal was raising funds to find cures for dreaded diseases. Nearly every disabling condition had a telethon and a television personality, if not a washed-up celebrity, associated with it. But wisdom was not a virtue of these organizations, all of which were not-for-profit, federally tax-exempt. Their myopic view to fund research to achieve cures meant that children long beset with disabilities were being ignored, if not forgotten. But many parents, to their credit, began to demand education and government assistance for their disabled children. This led to “home-bound” schooling and federal financial assistance in the form of aid for disabled children or welfare. Reasons for individuals receiving federal financial assistance were many, from being unable to support themselves, to unemployment, to disability, to lack of education, to substance abuse, among other factors. Aid to Families with Dependent Children, a welfare program in effect between August 14th, 1935, and June 30th, 1997, was administered by the United States Department of Health and Human Services (previously, the U.S. Department of Health, Education and Welfare, a cabinet-level branch of the federal government from 1953 to 1979). These programs, although a thorn in the side of conservative politicians, led many parent advocates to disassociate themselves from charitable organizations and push for equal treatment for their children. It is said that a young, liberal Republican named Henry Kissinger, an adviser to then-New York Gov. Nelson Rockefeller, wrote a scathing report on the lack of education of thousands of children with disabilities in New York [Dr. Frances Berko, 1984]. This study and parental pressure helped usher in schooling for children with disabilities. Home-bound schoolchildren with disabilities were pushed, with the advent of the lift-equipped yellow bus, into “health conservation classes.” Children with disabilities were now in school buildings, although integration with their non-disabled peers was still a pipe dream. The ‘60s were tumultuous times: The fight for civil rights by Black Americans was in full gear, a massive anti-war movement against the Vietnam War radicalized young people, and scorn for the “establishment” fed the forces of the left. Women’s liberation was just beginning, and the “consumerism movement,” led by Ralph Nader, questioned the integrity of every product sold. While America was at its crossroads, young people with disabilities watched and learned the tactics of activism. The time for advocates with disabilities to try to take the reins of the disability community came soon after. Although it was not the first time people with disabilities had demonstrated (In 1939, about 50 individuals with disabilities demonstrated demanding jobs in NYC.), in 1971 a large action by organized grass-roots groups of people with disabilities took place on the East Coast. On Labor Day that year, an advocacy group of people with disabilities known as Disabled In Action surprised the world by holding a loud and boisterous demonstration at New York City’s Sheraton Hotel, where the Jerry Lewis telethon for the Muscular Dystrophy Association had been held since 1966. (The telethon has not been held in NYC since.) Pictures of people with disabilities struggling with the police and security personnel were featured in local and national newspapers and the televised evening news. The Muscular Dystrophy Association was not happy with the negative publicity, but the reality was that “Jerry’s kids” had come of age, determined to change the social paradigm. The next test came when then-President Richard Nixon vetoed the Rehabilitation Act of 1973 because it “deviated from its original vocational training goal and had been turned into a social program.” The administration objected to the scope of the act because it introduced a relatively unnoticed provision calling for the research and demonstration of centers for independent living (CIL). In October 1972, more than 250 people, mostly college students and veterans with disabilities, tied up New York City traffic at the peak of rush hour and then took over the Nixon campaign headquarters there. The New York City Police Department did not know what to do: Should the demonstrators go to jail or to the nearest hospital for the chronically ill? (The protesters, eventually, were simply evicted.) This was just the beginning of clashes between the NYPD and disability advocates. As the movement took flight on the East Coast, on the West Coast, disability visionaries were starting their own revolution. At the University of California at Berkeley, a group of severely disabled students forced to live at the on-campus hospital rejected the custodial and institutional model of the day and began to plan a different type of facility and program. Most of those in what became known as the Cowell Residence Program organized their own class in the fall of 1969 called "Strategies of Independent Living," under the university's group-studies program, and began to develop a model of service that would meet their needs. The principles of that new model were:
The model envisioned in the proposed Physically Disabled Students' Program (PDSP) was a radical departure from past practice in the medical and rehabilitation fields. In July 1970, PDSP began operating with a full- and part-time staff of nine. This modest program was to evolve into the first CIL, the Berkeley Center for Independent Living. From the beginning, there was a firm commitment not only to the three principles cited above, but also to the idea that CIL would be an organization of and for all disability groups, more specifically, a coalition of the physically disabled and the blind. Those two groups had traditionally gone their separate ways, and in this pioneering attempt, they were determined to work together. The principle of cross-disabilities service was begun. Next issue: “The Book of Roberts” and the pioneers of independent living. PLEASE NOTE: PORTIONS OF THIS WEB SITE ARE UNDER CONSTRUCTION! |
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