History of the Independent Living Movement

(Excerpted from the mtstcil.org website)

The history of the independent living movement comes from this philosophy: people with disabilities have the same rights, options, and choices as anybody else.

The history of the independent living movement in the United States can be traced back to as early as the 1850s, when deaf people began establishing local organizations to advocate for their interests. These local groups merged into the National Association for the Deaf in 1880.

Protesting can be traced back to the depression years in the 1930’s. The League of the Physically Handicapped held protests against the federal government for discrimination against disabled people in federal programs.

The National Federation of the Blind and the American Federation of the Physically Handicapped were organized in the early 1940s. Disabled soldiers returning from World War II established the Paralyzed Veterans of America.

The current history of the independent living movement is tied in with the black civil rights struggle and with other movements of the late 1960s and 1970s. A major part of these activities involved the formation of community-based groups of people with different types of disabilities who worked together to identify barriers and gaps in service delivery. To address barriers, action plans were developed to educate the community and to influence policy makers at all levels to change regulations and to introduce barrier-removing legislation.

In 1972, the first Center for Independent Living was established in Berkeley, California by Ed Roberts and the Rolling Quads. Ed Roberts began classes at the University of California in 1962 in Berkeley. Since there was no housing for disabled students at that time, students with disabilities lived in the Student Health Service infirmary, a part of the Cowell Hospital.

By 1967, Cowell Hospital was home to 12 severely disabled students and by 1968, it became a formal program managed by the California Department of Rehabilitation. Inspired by the political activism of the 1960s, these students began to see themselves not as patients but, in political terms, as an oppressed minority.

While living in the infirmary, a sense of community developed based on the barriers and discrimination that they all faced. The group of students began to call themselves the Rolling Quads. As the Rolling Quads, they protested the arbitrary restrictions placed on them by the rehabilitation counselors. When one counselor determined that two of the disabled students were “infeasible” and would be unable to find jobs out of college, she attempted to send them to a nursing home.

Ed Roberts and others protested and demanded that the counselor be reassigned and that the students be reinstated at the college. At one point in the protests, a psychiatrist from the Department of Rehabilitation threatened to institutionalize all the Rolling Quads. After the Rolling Quads went to the local newspapers, the state backed down, reassigned the counselor and reinstated the students.

At the same time, Jean Wirth of the United States Department of Health Education and Welfare had developed a program of monitoring peer counseling and supports for minority college students in order to reduce their drop out rate. Jean approached Ed Roberts and the Rolling Quads and asked them to design a similar type of program for the disabled students.

The program they developed was called the Physically Disabled Students Program (PDSP). Included were provisions for Personal Assistance Services, wheel chair repairs, emergency attendant care and help in obtaining whatever financial services were available under the various state, federal and social service rehabilitation programs.

The three principles of PDSP were:

  • experts on disabilities are the people with disabilities
  • the needs of people with disabilities can best be met with a comprehensive program, rather than fragmented programs at different agencies and offices
  • people with disabilities should be integrated into the community

As the program gained in popularity, people with disabilities who were not students began applying for services. In May of 1971, the PDSP began meeting with community residents who needed these services and established the first center for independent living with a one-year $50,000 grant from the Federal Rehabilitation Services Administration.

Central to the philosophy of the Center for Independent Living (CIL) was that it be an advocacy organization – not a social service agency.

In the 1970s, the CIL founded the Disability Law Resource Center, which became the independent Disability Rights Education and Defense Fund (DREDF), a nonprofit national law and policy center dedicated to expanding the civil rights of all people with disabilities and their families.