Born: January 23, 1939
Died: March 14, 1995
Roberts, a polio survivor, was a leader in the civil rights movement that championed the rights of people with disabilities to lead independent lives. He helped found two organizations - Center for Independent Living (1972), and the World Institute on Disability (1984). Both organizations are now located on the Ed Roberts Campus, a universally designed, transit-oriented campus, located in Berkeley, California.
Brief Biography: Roberts contracted polio in 1953 at the age of 14. He survived but with significant respiratory muscle and limb weakness and atrophy. He used an iron lung for sleep, and because he learned to frog breathe (gulping and swallowing air forcing it in to the lungs), left the iron lung during the day. He attended Burlingame High School (California) once a week as a senior. Prior to attending class in person, he was connected to his classes via a phone.
He was the first severely disabled student to attend the University of California at Berkeley, but not without a struggle. A community college counselor suggested he contact the California Department of Rehabilitation for assistance to attend the university. He was initially denied, because a counselor declared it “infeasible” that he would ever work. However, he and Zona, his mother and unrelenting advocate, prevailed.
Roberts’s first room while attending the university was Cowell Hospital on the UC Campus. As a senior, he was featured in Parade (April 5, 1964). An Oakland Tribune article in 1969 reported that 11 significantly disabled students were staying at Cowell, and 20 students in wheelchairs were attending Berkeley. The article was reporting on Roberts’s trip to Washington to speak with the US Bureau of Higher Education about guidelines for the Higher Education Act of 1965. During this time, he secured federal money to establish the Disabled Students Program at the university, a first for the nation.
Roberts received his bachelor's and master's degrees in political science from the university and taught political science there for six years.
In 1972, Roberts and his friend John Hessler founded the Berkeley Center for Independent Living, a self-help model of advocacy and service by and for people of all disabilities. The goal of the independent living center was to provide “the vision and resources to get disabled people out into the community.” To assure that people with disabilities were in charge, they mandated that the staff and board be composed of 51% of people with disabilities. Both the goal and the mandate govern the world’s independent living centers.
In 1975, Governor Jerry Brown appointed Roberts head of the California State Department of Rehabilitation, a position he held until 1982. This was the same governmental agency that had deemed it “infeasible” that he work.
He received a MacArthur Foundation "genius" award in 1984 and used the grant to further the World Institute on Disability (WID) as an influential public policy center. Judith Heumann and Joan Leon had shared his vision and cofounded WID with Roberts the year before (1983). He served as its president until his death.
Roberts was invited to speak all over the United States and throughout the world. As a result of his personal story, his speaking engagements and his advocacy, he was called the “father of the independent living movement” by some. He often told the story that he heard a physician tell his mother, "You should hope he dies, because if he lives, he'll be no more than a vegetable for the rest of his life." He would add, "So I decided to be an artichoke - a little prickly on the outside but with a big heart."
Later in his life he used mouth positive pressure ventilation during the day. The photograph to the side shows him with the mouthpiece, which delivers air to his lungs from a portable ventilator attached to his chair.
Roberts married Catherine Dugan in 1976. They had a son, Lee, in 1978. Though Roberts and his wife later divorced, Roberts shared custody of his son.
Roberts died in 1995 of a heart attack at the age of 56.
March 2011/Joan L. Headley/Post-Polio Health International
Description of Papers: The Edward V. Roberts Papers, 1953-1998 [bulk 1975-1995], consist of writings, professional activities, subject files, and biographical information documenting Roberts's leading role in the movements for disability rights and independent living. The majority of the material is about Roberts's professional and political activities; there is limited information on his personal life.