Remembering a pioneer of disability rights on Ed Roberts’ Day.
Ed Roberts (1939-1995) was an American activist and a pioneering leader in the disability rights movement. He was the first student with severe disabilities to attend the University of Berkeley, California. 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. Later, he helped found the World Institute on Disability. The following is a compilation of several of Roberts’ most famous speeches. As you read, take notes on Roberts’ tone, use of humor, and central ideas.
I contracted polio when I was fourteen. I had a serious fever, and within 24 hours, I was paralyzed and in an iron lung.1 Within earshot, my mother asked the doctor whether I would live or die.“You should hope he dies, because if he lives, he’ll be no more than a vegetable for the rest of his life. How would you like to live in an iron lung 24 hours a day?” So I decided to be an artichoke… a little prickly on the outside but with a big heart. You know, the vegetables of the world are uniting, and we’re not going away!
The transition was hard. I was on oxygen for a while. I had terrible acne and nobody could understand why it was so bad; when they stopped the oxygen my acne went away. I was so young… I had to deal with heavy-duty issues at a young age. I remember one night, it was a war going on in my body. I was making all kinds of noises, guns, explosions, planes, tanks… a nurse came in and asked me what was wrong. “It’s a war,” I told her. I was fighting for my own life. At that time, portable ventilators had not been invented.Everyone made the outlook bleak.
I decided that I wanted to die. I was fourteen years old. Now, it’s very hard to kill yourself in a hospital with everything set up to save your life. But the mind is a powerful thing. I stopped eating.They started to force feed me. It was really demeaning. I dropped to 54 pounds.
My last special duty nurse left, and the next day I decided I wanted to live. You see, that was a big turning point. Up until then, these nurses were available and doing things for me around the clock — I didn’t have to make any decisions for myself because they were always there. When they all finally left, that’s when I realized that I could have a life, despite what everyone was saying. I could make choices, and that is freedom. I started to eat again.
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