History of Independent Living
The history of the Independent Living movement involves many different people working together to change life for people with disabilities in America. It’s a story of many different people and organizations working together to change the perceptions and laws that were preventing people with disabilities from participating fully in society. The Independent Living movement was a long time in the making but it really gained momentum during the 1960s.
The Story of Ed Roberts and the First Center for Independent Living
Ed Roberts is known as the father of the Independent Living movement. After contracting polio when he was in high school, he lost all but some movement of two fingers on his left hand and two toes on his left foot. He resumed his high school education but had difficulties getting his degree due to not being able to take physical education or driver’s education. His high school counselor also thought Ed should remain in school for another year. His mother, Zona, was determined to make sure Ed’s life would be as similar as possible to that of his peers. She kept advocating until the Superintendent granted Ed his diploma. Ed got his own sense of determination from watching Zona advocate for him.
Ed went on to get his community college degree. After graduation he went to the University of California at Berkeley (UCB). When he visited the college, the personnel realized his iron lung wouldn’t fit in a dorm room and they recommended he see Henry Bruyn at Cowell Hospital, the on-campus student health center. Bruyn came up with the idea for Ed to live at Cowell which was accessible to Ed. Ed became known as the first student with a significant disability to attend an American university. Word got out to John Hessler who joined Ed at Cowell. More students arrived at Cowell in 1965-66 leading to a formal program for students with disabilities. The students started to call themselves the “Rolling Quads”.
The Rolling Quads got their first taste of advocacy when a new administration tried to take control of the students’ campus life. They reported their experience to the press which resulted in her getting transferred. It also resulted in the Rolling Quads formally organizing as a student organization and a class was developed to think of ways to live outside of Cowell. Discussions started to happen between the Berkeley city council about building ramps in the city. They started to create ramps by taking sledgehammers to some curbs and adding cement to make ramps. The city started to pay attention to the group and started to build curb cuts.
Before moving to Riverside near Los Angeles for a job at the Disabled Student Services program, Ed urged the group to submit a proposal for grants to fund what they learned as the Rolling Quads. Their first attempt failed but their second attempt succeeded, and the program became the Physically Disabled Students Program (PDSP).
The PDSP began to attract people with disabilities in the area who weren’t students but needed services that the program offered. The Rolling Quads created the first Center for Independent Living (CIL) using a small research and development grant which enabled them to rent a small apartment that was the first CIL. Ed Roberts became the director of the CIL and expanded it to a nationally and then internationally respected organization. When Ed was nominated to be the director of the CA Department of Rehabilitation, he set up 11 Independent Living programs in the state.
Hugh Gregory Gallagher and the Architectural Barriers Act of 1968
Hugh Gregory Gallagher worked at a congressional office. With his frustration of trying to use the inaccessible Library of Congress he authored the Architectural Barriers Act of 1968 which was the first federal legislation to address architectural accessibility.
Passage of Section 504 of the Rehabilitation Act of 1973
A key development in the Independent Living movement was passage of section 504 of the Rehabilitation Act of 1973. The Berkeley activists, and other disability advocates created language that included concepts of independent living, client advocacy programs, and prohibitions of discrimination that were passed in the law. Then President Richard Nixon vetoed the legislation because he thought that it would be too costly and an administrative nightmare.
This veto led to public outrage and numerous protests. Judy Heumann (founder of the Disabled in Action) staged and organized a demonstration of sixty to eighty people on Madison Avenue that stopped traffic for four blocks. Congress passed another version of the Rehabilitation Act which eliminated independent living and client advocacy programs but kept Section 504. President Nixon signed the act, but it wasn’t being implemented due to similar concerns about costs and administrative headaches. This led to numerous protests and discussions with elected and other government officials. When, after President Jimmy Carter’s inauguration in January 1977, the law was still not being implemented, even more protests were held with one protest leading to a takeover of a federal building in San Francisco that lasted for 28 days. This protest involved more than 150 people with disabilities and Judy Heumann was one of the organizers. The public supported their effort, the mayor ordered law enforcement to stand down, and the Black Panthers and the Gray Panthers brought in food and assisted with the protesters’ personal care needs. Attendants were allowed to go back and forth to the building to bring necessities. Judy and others left the protest to go speak with the Department of Health, Education, And Welfare secretary but he refused to talk with them, leading to them camping on his front lawn until he signed and implemented the 504 regulations.
ILRU and ADAPT
In the late 1970s after the protests that led to the implementation of Section 504, the Independent Living movement accelerated. Houston’s Independent Living Research Utilization (ILRU) was formed to provide information related to Independent Living to CILs and later SILCs. This group was led by Lex Frieden.
During the late 1970s in Denver a group called American Disabled for Accessible Public Transit (ADAPT) was started by Wade Blank and fought for accessible public transportation. Many forms of public transportation were not accessible to people with disabilities such as wheelchair users. Their first protest was on July 5 and July 6 of 1978 in Denver. Other ADAPT organizations formed around the country. They used methods such as blocking or chaining themselves to buses under the theory that if people with disabilities couldn’t use the buses neither should anyone else. Police tried to arrest the protesters, but ironically police vehicles are often inaccessible and even if they were, jails often were not. Protests continued.
Independent Living in the 1980s
Centers for Independent Living formed the National Council on Independent Living (NCIL) in 1981 over concerns over the future of federal funding of CILs in the next reauthorization of the Rehabilitation Act. NCIL’s purpose is to ensure that its members retain funding and adhere to the Independent Living philosophy.
In the 1980s with the reauthorization of the Rehabilitation Act, consumer control changes were added that required that CILs’ boards of directors have more than half of their members be individuals with disabilities. This change reflected the belief that individuals with disabilities should have choices in the services and programs they receive.
In the late 1980s, President Reagan attempted to overturn Section 504 but was unsuccessful. He then appointed Lex Friedan to direct the National Council on the Handicapped (now National Council on Disability) and Justin Dart as Commissioner of the Rehabilitation Services Administration. Both had huge parts in the Independent Living movement.
Protests ramped up again against a ruling by the Supreme Court that Section 504 applied only to the part of an institution that received federal funds. Disability advocates fought this ruling leading to Congress in 1988 passing the Civil Rights Restoration Act over President Reagan’s veto. It made federal anti-discrimination statutes apply to an institution’s entirety if it received federal funding for even one program.
The Americans with Disabilities Act and Deaf President Now Movement
While disability advocates were protesting the ruling by the Supreme Court, Lex Frieden led a study about the place of people with disability in America titled “Toward Independence” which outlined discriminatory policies towards people with disabilities in housing, employment, transportation, education, and other aspects of American life. The study called for the creation of a law that would prohibit discrimination based on disability in these areas and led to a drafting of legislation that was passed as the 1990 Americans with Disabilities Act (ADA). Justin Dart knew the power of personal advocacy in passing laws. He traveled to every state in the 1980s collecting stories from people with disabilities on their experiences living in the US as a person with a disability. This aided in the passage of the ADA.
In 1987, Gallaudet University’s (a university for students who are Deaf and Hard-of-Hearing) President announced his resignation. Students at Gallaudet felt it was the perfect time for the university to select its first deaf president. The board of trustees ignored the students wishes and chose the only hearing person of three candidates. Students protested and began the Deaf President Now movement which grabbed the attention of the media and Congress and gained national support. Gallaudet finally agreed with the students and hired the popular Gallaudet dean of arts and sciences I. King Jordan as president. There also was a change in the composition of the board of trustees to be ½ individuals who are deaf.
These are only some of the stories of those who made the public aware of the injustices faced by people with disabilities in America.
References:
Freedom of Movement: IL History and Philosophy
https://www.ilru.org/sites/default/files/freedom_of_movement.pdf