By Eve Kushner
It was 1953 when Ed Roberts contracted polio, and although thousands of veterans had returned from war without the use of their legs, wheelchair users found practically no accommodations anywhere. Wheelchair user Susan O’Hara still found few resources when she moved to Berkeley two decades later.
In 1971 there were no accessible buses, BART did not exist, there were no blue parking spaces and no curb ramps besides those on Telegraph Avenue, writes O’Hara in an article for the Journal of the Ed Roberts Campus.
In light of such circumstances, Ed’s condition seemed utterly tragic. Moreover, the changes in his body had occurred with incomprehensible speed. One Sunday when he was 14, he seemed to have come down with the flu. Over the next two days he became stiff. Wednesday he walked into the hospital—the last time he ever walked. It soon became clear that he had polio. Friday night, he had trouble breathing and went into an iron lung. By then he was paralyzed from the neck down, with just a little motion remaining in his left foot and left hand.
His doctor said it would be a miracle if the Burlingame teenager lived to age 40. The doctor gave an exceedingly bleak picture of Ed’s future, asking the boy’s mother, Zona, “How would you like to spend the rest of your life in an iron lung?” The implication was clear: Ed had no reason to live.
The eldest of four boys, Ed had been quite athletic and independent-minded. “He just resisted being told what to do and how to do it,” says his mother. The paralysis deeply depressed him, particularly during his protracted hospital stay. Nevertheless, he remained feisty. When a nurse tried to force him to eat, he went on a hunger strike. And when his parents moved him to another hospital against his wishes, he refused to speak for six hours.
After leaving the second hospital, he resumed his high school studies, both through a tutor and a home-to-school electronic hookup. He graduated at 21, and with Zona pushing his wheelchair (manual, in those days), he took classes at the College of San Mateo for three years. He excelled in political science, and one professor deemed Ed the smartest kid he’d ever taught at that college. To Zona’s surprise, an adviser insisted that Ed attend U.C. Berkeley, because of its tremendous political science department.
Cal accepted Ed, but when university officials learned that he was quadriplegic, Zona and Ed faced some battles. Among other things, they struggled to find a living space on campus that could accommodate a heavy iron lung. Henry Bruyn, director of Student Health Services, proved to be an ally, helping Ed to live in Cowell Hospital. When Ed enrolled, a newspaper published an article with the headline, “Helpless Cripple Goes to School.”
That publicity had a widespread effect. As people with disabilities heard about the barrier Ed broke down, they gravitated toward Cal. After befriending one another, several quadriplegic students realized that with their collective power, they could demand rights, such as curb cuts and accessible entrances to buildings. Calling themselves the Rolling Quads, they began what became the Independent Living Movement. Their fights for civil rights would extend far beyond the confines of a university setting.
Ed emerged as the natural leader. He’s known for having said, “I’m tired of well-meaning non-cripples 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.”
After graduating from Cal in 1964, he earned a master’s degree in political science from Cal (1966) and worked toward a doctorate there in the same field. He married, had a son (now 30), and divorced. In the late 1970s, Governor Jerry Brown named Ed head of the Department of Vocation and Rehabilitation—the first person with disabilities to hold that post. In 1984, Ed received a MacArthur Fellowship. Across the country and world, many centers for people with disabilities now bear Ed Roberts’s name.
“I’ve heard him called the father of the Independent Living Movement,” says Guy Thomas. “He wasn’t all that much older than me, but he felt like my dad. He would say to me, ‘You know, Guy, you can do it. Go do it, Guy. Go do it.’”
Still sharp at age 88, Roberts’s mother, Zona, muses, “Thinking about the building now, not bad for a poor little crippled kid!”
Pushing politicians: (from top to bottom) Ed Roberts with Jesse Jackson, Jerry Brown, Bill Clinton. Photos courtesy Zona Roberts and Joan Leon.
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