Ed Roberts, Activist
By David Goode, Professor of Sociology, City University of New York
January 24, 2011
I met Ed Roberts via a project I was coordinating for the Administration for Developmental Disabilities on Quality of Life and Disability. This was in 1985 and by then he was already a legend to many. I telephoned him because knowing of him, and what he and Judy Heumann were trying to do at the World Institute on Disability (WID), I thought he would be interested and supportive of what I was trying to do.
I explained to him that I was trying to do something different, something that had not been tried before. This was to take what was known in research about quality of life, generally, not with respect to disability, and use it to structure a discussion about quality of life and disability. I explained that I wanted to use this term to develop policy in the disability arena, and to involve "all constituents" in the discussion – policy makers, families who have children with disabilities, professionals in the area, and most importantly people with disabilities themselves, including people who at that time had been labeled with the term "mentally retarded." The idea was to get these persons around the same table, to listen to each other and to come up with recommendations about how to improve the quality of life of persons with disability. I asked him if WID could send some people to participate in the discussion. He loved the idea and his immediate response was yes and that he wanted to come. That turned out not to be possible because of his previous commitments conflicted with the retreat schedule. But Ed did come to the National Conference on Quality of Life and Disability, and to a final meeting of the Project with the Administration on Developmental Disabilities.
In 1985 the idea of having people with a range of disabilities, families, scientists, and professionals in the field coming together to develop social policy was unheard of. How this federal project came to be is somewhat bizarre and beyond the scope of this writing. In any case, Ed recognized the possibilities and immediately lent his support. Without his support and counsel, I doubt whether we could have pulled it off. Several staff people at WID came to the retreat and were vocal advocates in the work groups. The same was true for the persons with intellectual disabilities who were there, from Sacramento's People First group. As a result of these discussions, I was able to make a list of recommendations to the Administration on Developmental Disabilities about how to develop social policy based on the concept of quality of life, and how to enhance quality of life of persons with disabilities and their families. I enlisted Ed and Judy's help in expanding upon the project (WID eventually did their own quality of life project in California and published their own report).
Ed played a very active role towards the end of the project. I asked Ed to come to Washington, D.C. to the National Conference on Quality of Life and Disability to speak. He accepted. It was actually the first time I met him, although we had talked many times on the phone before then. Ed showed up with his friend Tony Johnson. I saw him coming down the hall at the Washington Hilton, with Tony at his side acting as his personal assistant. Tony is an ex-marine who after his service began The Challenge Foundation an organization that uses karate to help develop the minds and bodies of often devalued persons, such as persons with disabilities or who have troubled backgrounds. Ed was one of his students. I took a karate class with Tony and Ed once, an interesting experience I will comment briefly upon below.
Ed was engaged in conversation – he was constantly in any disability event he attended. He seemed to know so may people personally and others were always introducing themselves. Tony came up to me. "You must be Dave Goode." Then he explained why he and Ed had gotten to the conference late. They had had travel problems, and the various late planes and rescheduling had taken its toll on Ed. "We got in last night late and Ed was totally zonked." I told him I understood and was happy they were there. "You know, Dave, Ed can't take his respirator on the plane. It's very hard for him to travel. He has to frog breathe. It was a long trip and he had to do that a lot of the time." I didn't know what frog breathing was but when explained to me, Ed's presence was even more deeply appreciated.
From the moment I met Ed in the hall at the Hilton, I felt he was a person who would be my friend. I immediately took to him and I think he appreciated where I was coming from and what I was trying to do. Less than a year later I was visiting him in his and his mom's house in Berkeley, serving as his personal assistant, hanging out, and using him as my political strategist and advisor. For the next decade I remained in this relationship, which I think both of us enjoyed. We worked, ate, and played well together.
Not everyone liked Ed. He had his enemies, especially political ones. Some of them were even involved in the Quality of Life Project, and it was always interesting to see he and them in the same room. Ed had a vision about people with disabilities, a vision that today we almost take for granted – that they are people like everyone else and should be afforded the same opportunities and responsibilities that everyone else has. He believed that people with disabilities knew best what they needed and that the basic question that had to be asked was simple: How can we help? He questioned the basic power of government over the individual and was suspicious of many social institutions. His enemies were always people who, no matter what lip service they gave to progressive thinking, preferred the status quo. I loved seeing him in meetings with them. He would never back down, was incredibly persuasive, which had to do with his personal charisma as well as the logic of his argument. While I thoroughly appreciated his performances, his enemies often did not. One time on an elevator after a meeting one remarked, "What a bastard, using his disability that way, he won't shut up, it's my way or the highway. Who does he think he is?" That person was obviously ignorant of Ed's history. He was a warrior and loved battle. He was good. He'd had so many.
Politics was only one of the pleasures shared with Ed. He knew how to have a good time, which included eating, drinking (when his health allowed) and looking for women. On the few occasions Ed came to New York I would hang out with him. There was no way I could match his energy or endurance. He'd always eventually put me under the table. Ed's candle burned brightly. Even though he could be physically demanding, the care and the long days, for me being with him was like a spiritual battery charge. These two parts of being with him were irremediably linked.
There are so many memories of Ed. But there is one I think tells most about his character and ultimate compassion for others. One trip to New York, my wife, son and I took him to Horn & Hardart's Automat – the last one and just before it was to close. I told him about it and that such automats had been all over at one time, a part on New York City history. He wanted to eat lunch there and we were off.
Ed was using a very large wheelchair at that time and we had some trouble negotiating the Automat's entrance. Once in, we found walls of small glass door compartments in which the food was kept. You put money into the slots near the doors and took out the food. He thought that was cool and wanted to see the food dispensers up close, to see what he wanted and how they worked. The problem was that there was a movable barrier, the kind one finds in theatres with metal posts and velvet style ropes, that made it impossible for his wheelchair to pass. I asked the cashier if I could move the barriers so that Ed could pick his food. She answered abruptly, "You cannot move the barriers; it is against the rules." She had an accent, eastern European I thought, and apparently an attitude. I asked a second time, explaining that I would move the barriers back as soon as Ed had picked his food out. Her answer was again no that it was against the law to move them. When I began to argue, Ed said that it was ok, I could go up to the food dispensers and tell him what was there.
So Ed sat at a table while I yelled across the place what they had to eat. It was disruptive and loud, and I could see that the cashier was upset by what we were doing. She wanted to say something, but having engineered the situation herself couldn't. Ed looked like he was enjoying himself. We ate heartily, Ed having his first and only H&H chicken potpie at my suggestion. As I began to clean the table Ed said, "Ask the cashier to get the manager. I want to talk to him." She did not want to do so, but I insisted, and eventually went toward the back myself. He had heard the commotion and was already on the way out. "My friend would like to speak with you." And Ed explained to him what had happened, that he had been unable to see and choose his own food, which everybody should be able to do, and that he was only telling him this because he did not want someone else to have to go through the same thing. The manager was very apologetic. He told Ed that he would refund his bill. "No, that's not necessary. But you could explain to the cashier that she should be a little more agreeable when a person in a wheelchair needs help." The manager was again apologetic and went over to the cashier and spoke with her.
As soon as he left, she came over to the table. "I apologize. I was afraid to lose my job" It was an uncomfortable apology. "I won't do that again. He told me I can move the barriers." Ed's response was "That's great. I know you weren't trying to be mean. You seem like a nice person. And I am not trying to give you a hard time. It's just that when you are in a wheelchair sometimes you need a little extra help. Remember that. That's all. You have a great day now." And we rolled out.
Ed knew that if you were going to convert people to be disability aware, it wouldn't be with vinegar. And, it seemed that doing it with honey came natural to him. He could be very charming, especially so with women. When you looked at him you wouldn't think he was a ladies man, but he was. But the way Ed looked often belied his abilities. He was a book that was often judged by its cover, and generally inaccurate conclusions were drawn.
Another story. On one visit to New York it had been arranged that Tony was to give a demonstration karate class at the International Institute on Disability in Manhattan. Tony knew I had studied karate and he and Ed invited me to take the class. It was conducted in the traditional Shotokan style, a combination of stretching and calisthenics, kata (a series of defensive and offensive moves in scripted form) and kumite (fighting) techniques. I have to admit that I was interested in how Ed and the other persons with disabilities were going to participate. Ed could only move fingers on his left hand, with which he controlled his chair.
The class was interesting and inspiring. Sensei Tony directed the various parts of the class. For some of the people with disability, those who had cerebral palsy and who were able to stand and walk independently, he assigned a helper, a member of the class who would assist the person with disability to perform the required actions as best he or she could. I worked out next to Ed, but did not assist him. Ed participated actively in the formalities of class (greeting and ending ceremonies) and in the kata and in the fighting. He did so, obviously, by using his chair and duplicating as best he could the pattern of movement that was required. He rolled with the other white belt students during kata. In the fighting part of the class Tony instructed Ed about defensive and offensive moves utilizing the chair as a weapon and as a defensive barrier. While I would not say he was hard on Ed, he made him work in the same way others in the class did. I remember after we had the kumite, I was Ed's fighting partner, we were both sweating bullets. The class was a real work out for him and I was amazed at his performance. It was a real work out for him. Too bad Ed did not do more exercise. His friends urged because he was so sedentary that he exercise regularly, but he wasn't that into it. I suspect this is one of the reasons he left us in his mid-fifties.
Knowing Ed convinced me more than any other experience of the value of disability. He had what would be regarded as very severe physical disability – one that prevented him from doing the most ordinary and simple things – and this was very much an essential part of who he was. It shaped and structured his experience of the world and he could not have been who he was without it. Yet, at the same time, knowing Ed made disability somehow irrelevant. He was a person with disability, but I really did not think of him as a disabled person. As he would sometimes say, his disability was highly enabling.
Ed would say of himself that once he became disabled and had to use a wheelchair and respirator, he realized that people were going to look at him, "So I decided I would rather have them look at me as a star." I think many of us who knew him would say that he did a great job at becoming that star. He was one for me.