History shows people with disabilities have been defined as objects of shame, fear, pity, or ridicule. People with disabilities have been confined, sometimes for life, in state institutions and nursing homes. Individuals were sterilized against their will, laws prohibited people with certain disabilities from marrying, or even appearing in public.
The history of Independent living comes from the philosophy of people with disabilities have the same rights, options, choices, and equal opportunities as anybody else. It is based on the premise that people with even the most severe disabilities should have the choice of living in the community.
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 1940’s. 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 African American civil rights struggle and with other movements of the late 1960’s and 1970’s. 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 1960’s, 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 students with disabilities 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, an English teacher at the College of San Mateo in San Mateo California, had developed a program of monitoring peer counseling and supports for minority college students in order to reduce their dropout rate. Jean approached Ed Roberts and the Rolling Quads and asked them to design a similar type of program for the students with disabilities.
The program they developed was called the Physically Disabled Students Program (PDSP). Included were provisions for Personal Assistance Services, wheelchair repairs, emergency attendant care and help in obtaining whatever financial services were available under the various states, 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.
The first Center for Independent Living
In 1972, the first Center for Independent Living was founded by disability activists, led by Ed Roberts, in Berkeley, California. These Centers were created to offer peer support and role modeling, and are run and controlled by persons with disabilities. By the turn of the century there were hundreds of such centers across the United States, and much of the rest of the world.
These accomplishments have not ended the discrimination or the prejudice for people with disabilities. There is still much to be done as millions of Americans with disabilities remain locked in poverty, consigned to institutions, and frozen out of society. Even so, it is impossible to deny that the disability rights and independent living movements have transformed American society.