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4.Ed Roberts: One Tough Vegetable

When Ed Roberts died this winter at the age of fifty-six he was perhaps the best known disability rights leader on the planet and was fast becoming a legend of his own time.

Ed was a prototypical sports-loving male when he was hit by a near fatal dose of polio. The doctor who saved his life said that Ed might be better off dead. The doctor informed Ed’s mother that her son was now a vegetable who would never do anything with his life since he would have to spend the rest of his life in an iron lung.

Some vegetable he turned out to be! Here are some of the things Ed did in his life once he got a portable respirator and he could spend part of his day out of his iron lung:

• Won the right to graduate from his high school in spite of not completing the mandatory physical education and drivers education requirements.

• Became the first significantly disabled student at the University of California at Berkeley while headlines screamed, "HELPLESS CRIPPLE ATTENDS UC IN IRON LUNG."

• Co-founded the first on-campus service center for university students with disabilities in the United Sates.

• Co-founded the Center for Independent Living, the first independent living center.

• Became the first significantly disabled person to head the California Department of Rehabilitation. A major accomplishment of his eight-year tenure at that post was establishing funding for independent living centers throughout California.

• Was given a Macarthur "Genius" Award.

• Co-founded the World Institute on Disability, a think tank devoted to worldwide disability issues.

These are some of the things Ed did with his life, but he was at his best while working with people.

I first met Ed Roberts in the Spring of 1969. I was newly arrived in Berkeley from southern California, and I was having a hard time adjusting to a new environment. On day somebody suggested I visit Ed and his mother. Upon hearing that Ed spent a lot of his time in an iron lung, I thought, "Great, just what I want to do, spend time with another cripple and his overprotective mother.

But I went anyway. Meeting Ed for the first time was a very unusual experience. When I first entered the house I was filled with anxiety. I heard the hissing and clanking of that great mechanical beast that was pushing oxygen into Ed’s lungs. As I approached, I could see parts of Ed’s body through the small portholes on his iron lung. I situated myself near the front of the machine in the hope that Ed could somehow read my letterboard. I was really nervous. Then I looked up in the mirror that hung over Ed’s face and served as his window on the world; there I saw the real Ed Roberts smiling back at me in all his glory. "How’s it going?" he said.

It was an extraordinary moment for me, because, in that instant, everything fell away; all my doubts and fears just disappeared.

Ed was very good at making people feel comfortable. Then he would tell you his dreams and convince you they were your dreams, too. And then he’d tell you what you were going to do to make those dreams come true.

Ed taught me to be a human being rather than a cripple and to view other people with disabilities the same way. It’s the most important thing I ever learned from a vegetable.

This article appears in AS Volume 2, # 1.

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