“The Father of Independent Living”
Born Jan. 23, 1939, in California and died on March 14, 1995.
In the late 60’s and early 70’s the University of California at Berkeley was nationally known as the home of radical politics and progressive social movements. Mario Savio and the 1964 free speech movement set the tone and developed the model for the movements that followed such as the Yippies and the Black Panthers, particularly influencing campus anti-war movements and tactics for student involvement in ethnic and racial social movements.
Many students took note and developed progressive movements to benefit various causes. Among the students on the Berkeley campus was Ed Roberts. The university hesitated to admit Ed as he was severely disabled from polio which he contracted as a teenager. He had virtually no functional movement and was dependent on a respirator to breath. “We’ve Tried Cripples Before and It Didn’t Work”, said the university. They reluctantly admitted Ed in 1962 and arranged for him to live in the campus medical facility, Cowell Hall. His brother, also a student, served as an on campus PA, often pushing Ed from class to class in an old manual wheelchair.
Ed was accustomed to rejection, a year earlier in 1961 the state vocational rehabilitation agency refused to serve him as he was considered too severely disabled and labeled unemployable. That decision was later overturned. One of the many ironies of Ed’s life was that fourteen years later in 1975, Governor Jerry Brown appointed Ed as state Director of the same agency that deemed him too severely disabled to ever work.
The following year, 1962 John Hessler, severely disabled secondary to a spinal cord injury, began attending Berkeley and living in Cowell Hall. Others followed, and evening and late night talks evolved to developing advocacy strategies to live independently on campus and in the surrounding community with necessary supports.
Ed’s leadership skills emerged and he took lessons from other campus movements to start the independent living and disability rights movements for persons with disabilities. Ed was quick to grasp that the struggle for independence was not a medical or functional issue, but rather a sociological, political, and civil rights struggle. Additionally, Ed’s involvement with Gini Laurie’s Toomey J. Gazette, (later named the Rehabilitation Gazette), clarified that credible information and new, innovative ways of managing life with a severe disability were best taught by peers with similar disabilities. Gini’s publications were essentially forums for people with polio and various disabilities to share how they managed their lives and maintained their productivity with severe disabilities. The roots of the independent living model can clearly be traced to influences from the civil rights movement and the peer support model associated with Gini Laurie’s Rehabilitation Gazette.
In the late 60’s and early 70’s Berkeley students with severe disabilities were organized into a group known as The Rolling Quads. Led by Ed, they began exerting pressure on the university to become more accessible and began seeking funding to develop a student organization to work for barrier removal and support services, including Personal Attendant services, for students with disabilities to live independently while attending school.
In a communication to Gini Laurie in 1970, Ed stated the following,
I have begun a consultation business for anyone needing help with problems with cripples. I’ve consulted with Health Education in Washington, DC, about programs for cripples in higher education, help secured $80,000 grant for UC Berkeley program run by cripples for the education of cripples. I brought John Hessler in as director. He is doing a magnificent job. Would you like to hear more? I believe no other consulting firm like this in the country.
I’m tired of well meaning noncripples with their stereotypes of what I can and cannot do directing my life and my future. I want cripples to direct their own programs and to be able to train other cripples to direct new programs. This is the start of something big — cripple power. -Ed
Ed Roberts was starting a self help movement that would radicalize how people with disabilities perceived themselves. He did it for himself and then began laying the groundwork for the rest of us. Independence and rehabilitation have not been the same since, and will never return to the archaic notions which perceived people with disabilities as passive recipients of charity, unable to self direct their lives.
After establishing the campus organization, Ed and others realized the need for an off campus, community based organization. In 1972, with minimal funding, the Berkeley Center for Independent Living (CIL) was started. The core values of the Berkeley CIL, dignity, peer support, consumer control, civil rights, integration, equal access, and advocacy, remain at the heart of the independent living and disability rights movements. Today, as many as 400 CILs exist throughout the country, funded with a mix of federal, state, local, fee for service, and private money.
In the mid-70’s newly elected governor Jerry Brown appointed Ed as Director of the state rehabilitation agency. In his position he was able to influence the establishment of many new CILs throughout the state. He served as director for eight years. Other states followed suit with Illinois Governor Jim Thompson appointing Jim Jeffers as Director of Rehabilitation Services, and Michael Dukakis appointing Elmer Bartels as Director of Massachusetts Rehabilitation Services.
In the early 80’s Ed and others established the World Institute on Disability in Oakland, a progressive think tank focusing on independence and civil rights for people with disabilities. Ed travelled the country and the world influencing the lives of people with disabilities. He was featured on a variety of news shows, including 60 Minutes.
As is true of far too many leaders with disabilities in the independent living/disability rights movement, Ed died at a far too young an age in March 1995. He was 55 years old.