Ed Roberts, 1939-1995

Ed Roberts, Prophet of Independence
Article from the Independent Life, Summer 1995
Our longtime friend and the founder of the independent living movement, Ed Roberts passed away on March 14, 1995. Ed Roberts was an internationally recognized leader in the Independent Living/Civil Rights for People with Disabilities movement, and President of the World Institute on Disability, a public policy organization that promotes the inclusion of all people with disabilities into the mainstream of life.

Born Jan. 23, 1939, in California, Ed received his B.A. and M.A. in political science from the University of California at Berkeley. His work led UC Berkeley, in 1970, to be the first University to have a Disabled Students Program funded by the federal government.

Ed Roberts was a pioneer: He was one of the early directors of CIL, a self-help model for more than 400 national and international centers of advocacy and service by and for people of all disabilities. During his tenure as Executive Director at CIL, the organization’s annual budget grew from $40,000 to $1,000,000.

He was appointed Director of the California Department of Rehabilitation in 1975. When he left in 1983, the department had 2,500 employees and a $140 million annual budget. He implemented independent living programs on the state level and advocated for their adoption at the national level, influencing policies that are in place today.

He co-founded the World Institute on Disability, an organization directed by people with disabilities and dedicated to the elimination of ” handicappism” through equity of opportunity and full participation within our society. He helped organize and found Disabled People’s International, a consumer directed international organization for people with disabilities.

He was a MacArthur Fellow, an N. Pike awardee, a Giraffe, the undisputed father of the Independent Living Movement, a student of karate, a world traveler (having logged one million miles), a television star and loving father. Ed Roberts was a man of extraordinary warmth, optimism, vision and humor. He encouraged all to take risks so that positive and creative action could improve all of our lives, whether we are temporarily able-bodied (affectionately called TAB) or people with disabilities. He improved the lives of millions of people.
Ed was our father, our brother, our friend.

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Comments from Ed’s friend and colleague Justin Dart:
Ed Roberts died on March 14, 1995. He was a major prophet of the new revolution of independence, not for nations or groups, but for people as individuals. Ed declared that people with disabilities are fully human; that they have a right and a responsibility to throw off traditional paternalism, to take control of their own lives, to help build a new culture in which they and all people participate fully in the leadership, the labor and the fruits of society.

Like most great prophets, his ideas came not from books, polls and experts, but from the depths of his vulnerability, of his passion for life, of his love for people. Like most great prophets, the power of his message was not simply words and logic, but the example of his life, the profound power of principles lived. Like most great prophets he inspired others to institutionalize his agenda, and to plant its seeds around the world. Unlike most prophets, his life produced more than a new version of an old idea and a popular movement bearing his name.

Our revolution is expanding the definition and the process of human being itself, in the name of all. Millions have benefited. Billions will benefit. Let us celebrate this prophet. Not, as with prophets past, by monuments and rituals, but by living the dream of independence. Each one of us a prophet, each one of us a leader in the struggle to focus the full force of science and free enterprise democracy on the empowerment of individual humans. Let us unite as never before. Let us go forward in the spirit of Ed Roberts, with love, with truth, with courage, with absolute commitment to a society by all.

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Ed Roberts: UC Berkeley Radical
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, 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. He continued, 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.