Ed Roberts: A Founding Leader of the Independent Living Movement

Ed Roberts: A Founding Leader of the Independent Living Movement

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Thanks to legislation passed in California mandating that students learn about disability history in school, future generations will know who Ed Roberts is, and what a significant contribution he made to the disability rights movement. Of course we in the disability community are very familiar with Roberts and how he made history. We consider him one of the most consequential founders of the Independent Living Movement that began in the 1960s.

I had the pleasure of meeting Zona Roberts, Ed's mother, several years ago while I was on staff at SVILC. We were hosting the First Annual West Coast Disability Pride Parade, and we honored her as Grand Marshal. The short time I was able to share with Ms. Roberts, it was easy to see where Robert got his spirit and determination, and how they made a great team when he was growing up in his quest for independence.

In case you aren't familiar, the story goes like this: Ed was 23 years old and he wanted to do what most young people of that age want to do: he wanted to go to college. Bias and physical barriers of access made Robert's efforts to achieve academic milestones a constant struggle. He had to learn early-on how to advocate for himself and his needs. Initially taking courses by telephone, his mother insisted he attend some classes in person, in order to socialize him and prepare him for the world outside his doors-- disability or not.

Two years before the Salk Vaccine 

Ed was born on January 23, 1939, and at the age of 14, contracted polio that paralyzed him from the neck down. Because it affected his breathing, he slept in an iron lung at night, and breathed using "frog breathing" (a method of forcing air into the lungs using his facial and neck muscles) during the day.

Becoming an Activist Leader

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Upon completing studies at the College of San Mateo, Ed decided he wanted to attend the University of California at Berkeley. The California Department of Vocational Rehabilitation was initially resistant to support him with that goal because his counselor thought he was "too disabled" to ever get a job. (Incidentally, later in Ed's career he would be appointed to be director of DOR. Yes, he would go on to lead the organization that at one point discriminated against him.) Thankfully not everyone agreed with Ed's rehab counselor. Many Cal Berkeley administrators supported admitting Ed and said that the University should do more to accommodate him.

Resident housing was a challenge when Ed was admitted in 1962. Mostly because none existed. Because he needed to sleep in his iron lung at night, the only facility available was a room in a vacant wing of the Cowell Campus Hospital. Ed accepted with the caveat that the living quarters be outfitted and regarded as a dormitory space, and not a medical facility. He became a pioneer, paving the way for future disabled students admitted to Cal Berkeley who wanted to live on campus. Within a few years a full-fledged Cowell Residents Program was in operation.

In addition to his studies, Ed became a member of a group of disabled students-- paraplegics and quadriplegics-- who called themselves the "Rolling Quads." Together they displayed positive expressions of disability identity and worked to advocate for more access and progressive policies for disabled students, on campus and off. They launched the first-ever student-led disability students program (PDSP). Ed graduated in 1966 with an M.A. in Political Science.

Life After College

Ed went on to teach political science at Nairobi College as well as help lead the first Center for Independent Living (CIL) during a pivotal beginning of the larger disability rights movement. The CIL provided organized advocacy and support for disabled people both on and off campus who were of many ages, races and disabilities. It provided the template for how future independent living centers would be formed across the country in years to come.

In 1976 California Governor Jerry Brown appointed Ed Director of the California Department of Vocational Rehabilitation at the State Capital in Sacramento. He remained director for seven years, at which point he returned to Berkeley where he co-founded the World Institute on Disability with Judith Heumann and Joan Leon. He also participated in the Section 504 protest and occupation, testifying with other disabled people about how they were being discriminated against and demanding that the 504 regulations be signed into law.

Born on January 23, 1939, Roberts would have celebrated his 77th birthday today. He died on March 14, 1995, at the age of 56 from cardiac arrest.

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