Highlights from speeches by Ed Roberts
As collected by Jon Oda
I contracted polio when I was fourteen. I had a serious fever, and within 24 hours, I was paralyzed and in an iron lung. 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.
Before I had polio, I was an athlete. I really didn't like school. I thought I would be a professional baseball player. But after contracting polio, school became my thing. I used to go to high school by telephone. After about a year in the hospital, I moved back home to Burlingame. We had a phone that was connected to the classroom, and that's how I went to school for three years.
During my senior year, my social worker and my mother got together and kicked me in the ass. They told me that if I didn't get out of the house now, I would never get out. So I went to school for the first time. I had taught myself glossopharangeal breathing (frog breathing), where you swallow air into your lungs, so I had been spending time out of the iron lung before. But I was scared to go out and be seen by people.
I remember that day very clearly. I arrived during lunchtime. My brother lowered me out of the back of the station wagon, and it was like a tennis match--everyone turned to look at me. I looked at someone, right in the eyes, and they turned and looked away. That was when I realized that maybe it wasn't my problem; maybe it was their problem. I checked myself out, and I realized two things. First, their looking at me didn't hurt, physically, and secondly I realized, hey, this is kind of like being a star...and I've been a star ever since.
It was the end of my senior year when they told me that I couldn't graduate--because I hadn't taken P.E. and driver training. My mother was so pissed off. "He can sit on my lap and I'll hold the damned wheel for heaven's sake!" she told them. The Vice Principal came over to my house and told me, "Now Eddie, you wouldn't want a cheap diploma now, would you?" We kicked him out of our house. My mother took it to the school board. This was my first real fight, and she was the one who showed me the ropes. We told the board, and they thought it was absurd. They threw it out and told the board to give me my diploma.
I was going to community college and I had a wonderful advisor. Her name was Jean Wirth. She was six feet nine. Her father was a doctor, and her whole upbringing she had been treated by him and his colleagues as a medical anomaly. She had even had an operation where they cut and removed part of her leg bones to shorten her, so she understood what disability was about first hand. When I told her that I wanted to study political science, she told me I should go to Berkeley. This was in 1962.
I went to the Department of Rehabilitation and tried to get some help. The counselor, who had a disability himself (he couldn't use one arm), gave me a test to take. Later, he told me, "Well. This test shows that...you're very aggressive." He said it as if it were some kind of negative thing. "Well, if you were paralyzed from the neck down, don't you think that aggressiveness would be an asset?" He told me that I was infeasible to ever work. We jumped all over him, we got it out to the papers and they helped me. But I remember, that evening, I had a dream. I dreamt that some day I would be the head of the Department of Rehabilitation, and the policies would be changed so that people with the most severe disabilities would be served first.
And thirteen years later, Jerry Brown hired me as the Director. That was during the protest against HEW (Health, Education and Welfare). The head of HEW was trying to get 504 pared down. We staged the longest takeover of a federal building in history so far--for 45 days we held their offices in San Francisco. We had the Mayor's support, so lines of communication and food were flowing. Some people with significant health needs risked their lives to stay at the barricades and we all stuck it out I was shuttling between the protest and the place where I was to meet Jerry. When I finally met him, he asked, "Are you one of the leaders of this?" I told him that I was and he listened. Not only did he hire me, but he never cut program funding for people with disabilities while I was there. If he ever had a question, he would come to me directly. I served as the Director for nine years. I went straight from being on welfare to this state government position. People asked me if I was going to become a bureaucrat. I told them, "No. I think I'll be an advocrat." I fired a lot of people early on. Not the guy who told me I would never work though.
The system was set up all wrong, and those flaws persist. To give you an example, I met a Rehab Counselor once who had won some award; this was the guy who had made the most job placements out of everyone. He was bragging to me about how many people he had helped to get to work.
I saw him months later, and he had changed. His placement number had dropped significantly. "What happened?" I asked him. "One day, one of my clients came back to the office and told me, "Well, I lost your job today."
He had realized that while pushing for a volume of placements, he wasn't helping people to develop careers. They were getting jobs and quitting or losing them, and he was marking them all down as successes. The whole system was set up this way. The counselors are good at making decisions for people instead of throwing the power back to the consumer. "What do you want? Let's see if we can make it a reality." We have to put the choices back in their lap. Service professionals who work with disabled people have to make this into an art form. People come to you and expect to be told what to do. It's your job to place that power back into their hands. You are there to help them find out what they want to do...not to decide what you think is best for them.
If you are working with someone and you really don't like or get along with them, well, you should just realize that this sort of thing happens to everyone and transfer them to someone else. Also, make sure that you are taking care of each other.
Before I was the Rehab director, I went to Berkeley. When I first began talking with the administration, they told me, "We tried cripples, and they don't work." I was adamant about going there. It was 1964 I had to sue them to get in; the same semester James Meredith was escorted into an all white classroom, I was rolling into a Berkeley classroom.
They didn't know where to put me. The dorms weren't accessible, and we had to find a place that would accommodate my 800 pound iron lung. They finally decided that I could live in a certain ward of Cowell on the edge of campus. Soon there were a bunch of us crips at Berkeley. It was an exciting time. The protests and student movements were rising all around us, and we were right there. John Hessler and I used to roll right up to the front of the demonstrations and stare down the police. What could they do? When they threatened to arrest us, we just asked them, "How are you going to get us there? Do you have an iron lung in your prison?" That's one drawback of the ADA I guess, because they didn't have accessible jails back then, which meant they didn't arrest us.
I encourage everyone to go out and get arrested. Not just for anything, but for the cause, with ADAPT for example. Getting arrested for what you believe in can really change your perspective; it can strengthen your resolve. I also encourage everyone to go out and buy Saul Alinsky's book Rules For Radicals. Although Alinsky was sexist, you should still read it.
I learned a lot from the women's movement. They used to let me go to their meetings; I guess they saw a connection between our experiences. I remember them talking about how to deal with stereotypes of weakness and passivity that society placed on them. I heard women talk about how they had manipulated men by capitalizing on these stereotypes. I realized that disability is actually a strength. If someone comes up to me and doesn't look me in the eye, if all they see is my ventilator and my chair, I can tell right away. If they don't see me as a human being, if they only see my equipment, I know that I can get whatever I want out of them. As long as this is not used pathologically, but to create beneficial change for others, it is a strength. Disability can be very powerful.
I remember meeting with Leonard Pelletier before he was arrested. I met with Stokeley Carmichael, and others in the Black Power movement. When I told them that we were all fighting the same civil rights battle, they didn't believe me; they didn't understand our similarities. I did. Even now, many people don't realize it.
While I was at Berkeley, I was still in contact with Jean, my advisor from community college. She told me that she was trying to establish a nationally funded pilot project for minority students attending universities. Her concept was that the dropout rate for minority students in colleges wasn't because they just couldn't do the work, but because of the drastic changes involved in moving away from one's community into a setting where there weren't cultural supports. She was in Washington setting up the guidelines for the grant and invited me to help them with a program for people with disabilities as a minority. This was my first trip by airplane. When I returned to Berkeley, we submitted a grant proposal, and it was somewhat of an inside job. We got the funding, which became the Disabled Students Program (DSP) at Berkeley.
The program had three main parts: a pool of attendants and emergency attendants for people, a group of engineers who would repair wheelchairs and eventually, an accessible housing list. DSP was so successful, people in the community began to use its resources. On numerous occasions, the school told us that we couldn't serve anyone who wasn't a student. But we did it anyway.
My mother Zona managed the attendant pool. I remember we sent someone to visit with a high ranking military official who was responsible for the conscientious objectors. Edna Brean met with him and told him about what attendants do for people with disabilities and that conscientious objectors would be ideal for the job. This official was enthusiastic, he thought this was like a punishment for these people who refused to fight. So, we got them signed up. These were the kind of people we wanted to work with. We were very lucky.
I learned a lot about organizing while I was at Berkeley. As a teacher's assistant, a small group of us organized a student strike in order to fight for reasonable wages. We held teach ins and thousands of students skipped their classes. I realized then that a few people could really make a big difference. It was an exciting time. So much was going on there. I remember when the police tear gassed the campus. I was teaching a class when it started to come into the room. I had to be evacuated. That was when Reagan was governor.
The sixties was also the era of my own sexual freedom. I had asked the doctors in the hospital whether I would be able to have sex or not and they told me that I wouldn't. It was a heavy blow to a kid who was only fourteen. While I was at Berkeley, I had a girlfriend. At that time, I used a push chair. Now, it became extremely inconvenient to have my attendant there pushing me around while I was with my girlfriend, so needless to say, I was highly motivated to find out how to drive a power chair. I started working with an engineer on it, and we discovered that if the controls were turned around I could drive. I can pull towards me with my left hand, but I can't push away. So we set it up and I spent a couple of hours bouncing off of the walls and I got the hang of it. Then she jumped into my lap and we rode off into the sunset together...or to the nearest motel, I can't remember which.
I finished everything but my dissertation for my Ph.D.. Everyone there thought I was going to get my degree and go live in a nursing home for the rest of my life. I broke out during the early 70s and decided that I didn't want to be an academic any more. I went and taught at an all Black school up in Palo Alto for a while.
Soon after that, a few of us decided to try and replicate our vision of what the DSP was for the community. We had a shoestring budget and a hole in the wall office, but it was enough. My friend John Hessler from DSP was in France, and I wrote to him to invite him back to help us get the Berkeley Center For Independent Living (CIL) started, and he did. The title was a revolutionary concept at the time. Most people never thought of independence as a possibility when they thought of us. But we knew what we wanted, and we set up CIL to provide the vision and resources to get people out into the community. The Berkeley CIL was also revolutionary as a model for advocacy based organizations: no longer would we tolerate being spoken for. Our laws said that at least 51% of the staff and Board had to be people with disabilities, or it would be the same old oppression. We also saw CIL as a model for joining all the splintered factions of different disability organizations. All types of people used and worked in our Center. This was the vision we had for the future of the Movement.
We secured the first curb cut in the country, it was at the corner of Bancroft and Telegraph Avenue. When we first talked to legislators about the issue, they told us, "Curb cuts, why do you need curb cuts? We never see people with disabilities out on the streets. Who is going to use them?" They didn't understand that their reasoning was circular. When curb cuts were put in, they discovered that access for disabled people benefit many others as well. For instance, people pushing strollers use curb cuts, as do people on bikes and elderly people who can't lift their legs so high. So many people benefit from this accommodation. This is what the concept of Universal Design is all about.
Now, Berkeley is a very accessible city. We are visible in the community, because we can get around everywhere fairly easily. I remember meeting a disabled woman who came to Berkeley from England. I asked her how things were going for her, and she told me that there was something strange about it that she couldn't put her finger on. I saw her a little later, and asked her if she had figured it out. She had figured it out it was that people weren't staring at her. There are so many of us in Berkeley, she just wasn't feeling stigmatized.
We're all getting older. We can't avoid it, can we? I look around, and I notice that a lot of us are getting gray. As we get older, we realize that disability is just a part of life. Anyone can join our group at any point in life. In this way, the Disability Rights Movement doesn't discriminate. So those of us who are temporarily able bodied and working for access and accommodations now get older, the changes they make will benefit them as well.
We are a very diverse group of people. There are all kinds. I knew a guy who was paraplegic--he was a second story man. He used to rob people's houses by rolling up to their home, parking his chair and climbing up the wall to get in. He would take all their jewelry and climb back down. He must have stolen over a million dollars worth of jewelry before he was caught. The police took a long time to catch on. They had seen the tracks but they just didn't make the connection; they just couldn't believe it was a guy in a chair. They sent him to an accessible prison. Like I said before, that's the ADA for you.
I hate it when people come up to me. Most of the time when this happens, I'm really level headed and I just tell them, "I'm already healed. Just because I can't walk doesn't mean I'm not whole." But this one time when I was in the Philadelphia train station this guy came up to me and put his hand on my head and said, "Friend, I can heal you." First of all, nobody pats me on the head. I just looked up at him and said, "And you can fuck off too!" Sometimes drastic situations call for drastic measures.
I want to talk about anger. Most psychiatrists and service professionals who work with us tell us that anger is a bad thing...a stage to get over or something that we need to overcome. But anger is a powerful energy. We don't need to suppress or get over our anger, we need to channel it into making change for the greater good. We need to make sure that we don't turn our anger in on ourselves or our loved ones, but focus it on removing obstacles, and making things happen. I've seen friends turn their anger in on themselves, and it killed them. And why do we turn our anger on our loved ones? It's safe, but they don't deserve it, and our relationships suffer from it. I get angry all of the time. I'm angry that people with disabilities are still second class citizens in this country. I get angry at all how 97% of the billions of federal dollars spent either perpetuate our dependency on the system or increase it.
We can only really be free and take our place in this society if we have economic freedom, which means careers. I remember we used to talk to employers about hiring people with disabilities as a moral issue: it was a charitable thing to do. Now, we have the ADA and there are companies like McDonald's who are hiring many people with disabilities. I once met the president of McDonald's and asked him why he hired disabled people. "Because it's good for my bottom line." he said. "We have found that people with disabilities are loyal workers." This is how it is today. People with disabilities want to work. We have converted our approach from asking to be hired out of sympathy to marketing ourselves as a significant employee pool, and a consumer pool as well. This is the legacy of the disability civil rights movement.