Ed Roberts (activist)

Early life

Roberts contracted polio at the age of fourteen in 1953, two years before the Salk vaccine ended the epidemic. He spent eighteen months in hospitals and returned home paralyzed from the neck down except for two fingers on one hand and several toes. He slept in an iron lung at night and often rested there during the day. When out of the lung he survived by "frog breathing," a technique for forcing air into the lungs using facial and neck muscles.

He attended school by telephone communication until his mother, Zona, insisted that he attend school once a week for a few hours. At school, he faced his deep fear of being stared at and transformed his sense of personal identity. He gave up thinking of himself as a "helpless cripple," and decided to think of himself as a "star." He credited his mother with teaching him by example how to fight for what he needed.

Activism

Ed Roberts is often called the father of the Independent Living movement. His career as an advocate began when a high school administrator threatened to deny him his diploma because he had not completed driver's education and physical education. After attending the College of San Mateo, he was admitted to the University of California, Berkeley. He had to fight for the support he needed to attend college from the California Department of Vocational Rehabilitation, because his rehabilitation counselor thought he was too severely disabled to ever get a job. Upon learning that Roberts had a severe disability, one of the UC Berkeley deans famously commented, "We've tried cripples before and it didn't work." Other Berkeley administrators supported admitting Roberts, and expressed the opinion that the University should do more.

Roberts graduated in 1962, two years before the Free Speech Movement transformed Berkeley into a hotbed of student protest. When his search for housing met resistance in part because of the 800-pound iron lung that he slept in at night, the director of the campus health service offered him a room in an empty wing of the Cowell Hospital. Roberts accepted on the condition that the area where he lived be treated as dormitory space, not a medical facility. His admission broke the ice for other students with severe disabilities, who joined him over the next few years at what evolved into the Cowell Residence Program.

The group developed a sense of identity and élan, and began to formulate a political analysis of disability. They began calling themselves the "Rolling Quads" to the surprise of some non-disabled observers who had never before heard a positive expression of disability identity. In 1968, when a rehabilitation counselor threatened two of the Rolling Quads with eviction from the Cowell Residence, the Rolling Quads organized a successful "revolt" that led to the counselor's transfer.

Their success on campus inspired the group to begin advocating for curb cuts, opening access to the wider community, and to create the Physically Disabled Student's Program (PDSP)—the first student-led disability services program in the country. Roberts flew 3,000 miles, from California to Washington, D.C., with no respiratory support, to attend a conference at the start-up of the federal TRIO program through which the PDSP later secured funding. The PDSP provided services including attendant referral and wheelchair repair to students at the University, but it was soon taking calls from people with disabilities with the same concerns who were not students.

He earned B.A. (1964) and M.A. (1966) degrees from UC Berkeley in Political Science. He became an official Ph.D. candidate (C.Phil.) in political science at Berkeley in 1969, but did not complete his Ph.D.

The need to serve the wider community led activists to create the Berkeley Center for Independent Living (CIL), the first independent living service and advocacy program run by and for people with disabilities. Contrary to common belief, Roberts did not found the Berkeley CIL, nor was he the CIL's first executive director. At the time, he taught political science at an "alternative college," but returned to Berkeley to assume leadership of the fledgling organization. He guided the CIL's rapid growth during a decisive time for the emerging disability rights movement. The CIL provided a model for a new kind of community organization designed to address the needs and concerns of people with a wide range of disabilities.

In 1976, newly elected Governor Jerry Brown appointed Roberts Director of the California Department of Vocational Rehabilitation—the same agency that had once labelled him too severely disabled to work. He served in that post until 1983. When California politics again shifted to the right, he returned again to Berkeley, where he co-founded the World Institute on Disability with Judith E. Heumann and Joan Leon. The World Institute on Disability is internationally known, and considered a hotbed of disability politics activism.

Roberts died on March 14, 1995, at the age of 56 from cardiac arrest.

Hundreds of centers for independent living around the world are based on his original model. These centers established a National Council on Independent Living that holds a meeting every spring in Washington, D.C. At the one held after his passing, on May 15, 1995, Roberts' empty wheelchair was towed by a volunteer as it symbolically led more than 500 advocates from around the country for the last time, on a memorial march from Upper Senate Park to a vigil in his honor in a Senate office building. Speakers at this vigil included Senator Tom Harkin of Iowa, Representative Steny Hoyer of Maryland, Judith Heumann, and Paul Hearne.

His papers are held at the Bancroft Library at UC Berkeley. Roberts has been termed the father of the independent living movement in the U.S., though Lex Frieden of Texas was more well known in Washington politics. Roberts is highlighted in Joseph Shapiro's 1993 book, No Pity: People with Disabilities Forging a New Civil Rights Movement.

Marriage and children

Ed Roberts married Catherine Dugan in 1976 and in 1982 the couple divorced. They shared custody of their son Lee together.

Awards and recognition