"We have to get out there and change the old attitudes."
– Ed Roberts
Ed Roberts: The Birth of the Independence Living Movement
The story of the independent living movement is best told in the words of Edward V. Roberts, who is widely acknowledged as its father.
In addition to directing the World Institute on Disability, Ed traveled the globe, using his own story to show people that having a disability is not a barrier to a rich, full life.
Rather, it is society that has erected barriers – inaccessible buildings, low expectations, stereotypes – and it is the job of persons with disabilities to take control of their lives and remove all barriers to full and equal access to society.

Ed Roberts
The following are highlights from Ed's many speeches, as recorded by John Oda, a personal assistant.
"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 on the inside. 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 remember one night – there 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 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.
High School and Graduation
"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; and so I went to school for the first time. I had taught myself glossopharyngeal 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 lunch time. 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.

Ed Roberts swimming with dolphins
"It was the end of my senior year when they told me that I couldn't graduate, because I hadn't taken physical education 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. The board then disregarded the missing requirements and told the principal to give me my diploma.
"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; and so I went to school for the first time. I had taught myself glossopharyngeal 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 lunch time. 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 physical education 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. The board then disregarded the missing requirements and told the principal to give me my diploma.
"We had the Mayor's support to stay at the barricades. I sent photographers down to take footage of the demonstration outside and was there several days with the outside demonstration. 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. 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.
Serving as Director
"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 once met a rehabilitation counselor who had won an award for making the most job placements. 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 realized that while pushing for a large 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. We have to put the choices back in their lap. Service professionals who work with people with disabilities 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."
University of California at Berkeley
"Before I was the California Rehabilitation Director, I went to the University of California at 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 1962; 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 Hospital, on the edge of campus. Soon there were a bunch of us 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 or accessible transportation 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.
"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. 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."
Disability Can Be Very Powerful
"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. We used the power of disability in political strategies many times. Once when we were at a meeting with Governor Reagan, we sent Hale Zukas to go talk to him. If you know Hale, one of the founders of Berkeley CIL, then you know that Hale has severe cerebral palsy. He drives his chair with a head pointer and has a speech impairment.
"So we sent Hale to go get Reagan, while on the side, next to him, we placed this beautiful woman with paraplegia who knew our agenda as well as Hale did. When Reagan saw Hale, he was very uncomfortable, and automatically latched on to this woman who proceeded to lay out our agenda.

Hale Zukas
"I remember meeting with the leaders of the American Indian Movement before they were 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 the parallels.
"While I was at Berkeley, I was still in contact with Jean Wirth, 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 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.
The Physically Disabled Students Program
"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 and began the Physically Disabled Students Program (PDSP) 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. The PDSP was so successful that 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 just punishment for people who refused to fight. So, we got them signed up. These were the kind of people we wanted to work with.
"I learned a lot about organizing while I was at Berkeley. As teacher's assistants, 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.
"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 a power chair. I can pull towards me with my left hand, but I can't push away. So we set up the switch and I spent a couple of hours bouncing off of the walls until I got the hang of it. Then she jumped onto my lap and we rode off into the sunset together – or to the nearest motel.
"I finished everything but my dissertation for my Ph.D. The Dean of Berkeley thought that I was going to get my doctorate 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 anymore. I went and taught at an all-black school up in Palo Alto for a while.
Replicating the Vision
"Soon after that, a few of us decided to try and replicate our vision of what the PDSP 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 PDSP 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 the 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 the 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, 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.
"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.
"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 woman with a disability who came to Berkeley from England. I asked her how things were going for her, and she told me that there was something strange – people weren't staring at her. There are so many of us in Berkeley that she 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. As those of us who are temporarily able-bodied and working for access and accommodations now get older, the changes we make now will benefit us as well.

Ed Roberts