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History of the Independent Living Movement

History of the Independent Living Movement

By Alysa Chadow

Like other movements, the one for Independent Living for people with disabilities was born of the suppression of those deemed too different by society to take an active part in it.

For centuries, people with disabilities were seen as helpless, eternally child-like, and incapable of taking care of themselves. Their limitations-physical, cognitive, and sensory-were seen as their problem, and not as a wider issue for society to deal with.

Historical and social events from the 19th century onward changed society’s view of the disabled to one in which they were as self-sufficient as any able-bodied person. Disability was an issue for society, not the individual, to deal with. People with disabilities could have access to all aspects of life-housing, education, and employment-with the appropriate accommodations.

The Independent Living Movement was part of the broader Civil Rights movement of the 1960s and 70s. Leaders such as Martin Luther King Jr., Ralph Abernathy, John Lewis, and others were organizing the March on Washington and other activities to protest the incessant racism and resulting segregation that African Americans faced. Betty Friedan’s publication of THE FEMININE MYSTIQUE kick-started women’s ability to see themselves as fully realized human beings capable of living life on their own terms. At the UC Berkeley campus, students such as Mario Savio literally gave voice to students by advocating for free speech. If all these groups could stand up for their rights, so could people with disabilities.

Ed Roberts (1939-1995), considered the father of the Independent Living Movement, was paralyzed by polio at the age of 14. He spent much of his days in an iron lung, learning to force air into his lungs by moving his neck muscles by a technique known as frog breathing.

Roberts initially attended school by telephone until he was allowed into an actual classroom once a week. It was at this time that he learned to think of himself as a functional human being rather than a “helpless cripple,” thanks to his mother’s advocacy.

Roberts’ own advocacy began when a school administrator refused to grant him a high school diploma because he didn’t take Driver’s Ed or PE. He would go on to attend the College of San Mateo and then apply to UC Berkeley, where a school administrator tried refusing him admission, saying, “We’ve tried cripples before, and it didn’t work.” Even Roberts’ own Department of Vocational Rehabilitation (DOR) counselor said he wouldn’t be able to go to Berkeley because of his severe disability.

Roberts had supporters despite all this discouragement. When he was refused on-campus housing after finally being admitted in 1962, he was offered a wing in Cowell Hospital in order to accommodate his iron lung. Roberts also insisted that this wing be considered a dormitory, not a medical facility. Soon, other disabled students were admitted to the university, and together they made up the Rolling Quads, going about campus in their wheelchairs and providing positive role models for the able-bodied students. It was this group that advocated for curb cuts in the city of Berkeley, as well as starting the Physically Disabled Students’ Program (PDSP). Roberts traveled to Washington, D. C. in order to secure funding for the program, which initially served Berkeley students who were disabled. Soon, however, people with disabilities not affiliated with the UC were calling PDSP seeking help. The Center for Independent Living was founded in 1972 as a result. Staffed by people with disabilities, it became the first of Independent Living centers in other states and other countries as well.

Section 504 of the Rehabilitation Act, which prohibits discrimination on the basis of disability in any program or activity that receives federal financial assistance, was passed in 1973. However, both Congress and the department of Health, Education, and Welfare (HEW) were slow in drafting clear and concise language that would allow the section to stick. Many protests over this slowness were held around the country in the late 70s, but the longest and best-known one took place in the Federal building in San Francisco from April 4–May 5, 1977. Organized by Judith Heumann (1949–2023), Kitty Cone (1944–2015), and Mary Jane Owen (1929–2019), it included over 100 people with a variety of disabilities and their caregivers. Heumann, who also contracted polio as a child, had educational experiences similar to those of Roberts, and would go on to serve as an Assistant Secretary at the U. S. Department of Education under President Bill Clinton. Kitty Cone, whose Muscular Dystrophy had gone undiagnosed for years, had a long history of activism at the University of Illinois. Mary Jane Owen, who lost her eyesight later in life, would become a CIL board member, among other activities.

Despite electricity being cut off in the building and FBI agents stopping people from communicating with the media, the protesters used all the resources at hand to survive, including meals being provided to them by the Black Panthers and other sympathetic groups. Protesters relying on electricity to keep their medications refrigerated found air conditioners sealed off with duct tape to be a good source of refrigeration. Wheelchair users read instructions and other printed materials to the blind demonstrators. ASL users, both deaf and hearing, signed their latest updates through the windows to interpreters watching outside.

By the 28th day, the protesters had made their point. Regulations for Section 504 were signed into law by Joseph Califano on May, 1977, and would pave the way for the signing of the Americans with Disabilities Act (ADA) in 1990 by President George H. W. Bush.

There is now a generation of people with disabilities who are earning college degrees, living independently, and finding gainful employment thanks to the work of these Disability Rights activists. Some fashion magazines feature wheelchair-using models, and television shows such as SPEECHLESS star actors with disabilities. Members of this generation’s activists are now calling themselves disabled people rather than people with disabilities. For some, this is claiming a former negative as a positive. These issues invite discussions that would fill up many blog entries. That in itself is a win for the disabled community.




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