Ed Roberts, Activist
"Free Wheeling" Segment from "People in Motion, Ready to Live"
Ed Roberts: I've had people come up to me and say, "Whoa, I'd rather be dead than be like you."
Background talking: Morning, good morning. Morning.
Ed Roberts: And they miss it so much because life is such a joy. There's so much to life if you're into it. There are so many reasons to die if you're not at all.
Voice-over: Ed Roberts has helped millions of people find a reason to live. He helped launch a civil rights movement for people with disabilities so they could live freely integrated in their communities, not shut away in institutions. But when he first contracted polio at the age of 14, that idea was a long way off. His mother, Zona Roberts, remembers all too well the doctor's attitude when he told her Ed would live.
Zona Roberts: The next morning, I said to the doctor I was glad that had survived, and he wanted to know why. Would I like to spend the rest of my life in an iron lung? And what it would be like. The poor man was horrified
Voice-over: Roberts himself did not want to live.
Ed Roberts: I had decided to die, in the beginning. People told me basically that I would have no life. And, when you're in an iron lung and you're paralyzed from the neck down in a hospital where their whole job is to save your life, you've got to be pretty creative to kill yourself.
Voice-over: Roberts starved himself down to 50 pounds, and then the last of his special duty nurses left her post.
Ed Roberts: The next day I decided to live and I started eating. I know what the reason was. There is nothing in life if you're not in control of what happens to you. And I think that was when I began to realize that I had a choice over living and dying, and that I really wanted to live and to take control of my own life.
Voice over: Except for two fingers, Roberts is paralyzed from the neck down. He spends much of his time in an iron lung, but from the beginning, he learned to wheelchair and he learned to breathe with the help of a portable respirator forcing air into his lungs. And he learned to challenge society's low expectations of himself and other people with disabilities. He decided that his body may be limited, but his mind was not. The kid who had lived for baseball turned seriously to school, attending high school by phone hookup.
Ed Roberts: So I can remember wheeling down this for the first time in 1962, and there was a demonstration.
Voice-over: Roberts convinced a skeptical University of California to admit him. He became the first severely disabled student to attend. He had to live in Colland Infirmary, the only place big enough for his 800 pound iron lung. Newspapers headlined the conventional wisdom. He proved them wrong, eventually earning a master's degree. And soon other quadriplegics joined him on campus. The called themselves the Rolling Quads and began inventing a new world for themselves.
Ed Roberts: We, ah, realized that we could change some things, and the first thing we'd do is change our own attitudes to ourselves. Be proud of who we were and what we were, and go out and change it for others and for ourselves.
Ed Roberts: The most important part of that is working with other people, you move away from your own problems to help somebody else. And that liberated me. When I realized I could help others, it made me a lot freer to help myself.
Voice-over: At the university, the Rolling Quads literally opened the door for other students like them. They remade the Berkeley campus into one of the most physically accessible in the country, with a program designed to aid students with disabilities. Hundreds have earned their degree since then, without living like patients in the infirmary.
Ed Roberts: What's like living here now? Is it very different?
Voice-over: Naomi Amenta is a senior
Naomi Amenta: I guess so. It is... It is pretty much the only place I've ever been where I can be kind of anonymous as a disabled person. You know people say, "Oh, the woman in the wheelchair," and they don't automatically know it's me. There are people around here in wheelchairs that I don't know. So, I mean, it's kind of nice in a way because it takes the pressure off. You know, you don't always have to be an activist for yourself.
Voice-over: Roberts and his friends realized that access to education was only a beginning. They wanted to leave the campus, have jobs, and participate in their communities like everyone else.
Ed Roberts: You have to recognize that we didn't want to live in an institution. One... I remember one dean at the university said, "Oh, you'll finish your PhD. and then you'll live in a nursing home." And I said, "No, that's not the plan." We're here to change that whole idea.
Voice-over: Their new idea they called Independent Living.
Ed Roberts: Independent Living is a psychological idea much more than a physical concept. I'm paralyzed from the neck down, but I am completely in control of my own life. I make decisions about what I want. And when you begin to believe that, it's very empowering and powerful. And then it becomes... It's almost, ah... Well, it catches on with other people. They say, "Well, if he can do that, why can't I?"
Voice-over: They set up a place to spread that word and provided job training, housing referral, and skills to live ordinary lives. The center turned Berkeley into the first city with curb cuts, providing people with the most basic access to independent living. There are now hundreds of these centers throughout the world.
Ed Roberts: Our whole philosophy was: Do not make other people with disabilities dependent on you. Our whole professional system is set up that way. Always ask what do you want to do and help people learn how to make their own decisions. And you know what? It's that simple.
Voice-over: In 1975, Roberts had caught the eye of Governor Jerry Brown, who put him in charge of the California Department of Rehabilitation and its 2200 employees. Along the way, Roberts had shattered another myth.
Ed Roberts: I was always told that I could never drive a power wheelchair, which meant that any time I needed to move, I had to ask someone. And one thing you become very leery of, is asking for too much, so you cut out part of your life, the things you'd like to do.
Voice-over: Like falling in love.
Ed Roberts: And all of a sudden it became ridiculously inconvenient to have my attendant pushing me around. It was not... It was a real hindrance to intimacy. And being highly motivated, I decided the hell with all with all his comments, and I couldn't do it. I needed it for my life, and they got me in a power chair, and all he had to do was turn a controller around so I had control. And I've bounced off the walls a few times, and she jumped on my lap and we rode off in the sunset.
Voice-over: Roberts eventually married and fathered a son, Lee, now 16 years old. Roberts is divorced but shares custody.
Ed Roberts: This is access, Lee.
Lee Roberts: This is, like, awesome.
Ed Roberts: I was told I would never be able to have a child, and it was one of those myths again. It took finding the right woman in the right circumstances and getting together. And we had a kid.
Ed Roberts: And he's totally the joy of my life. He teaches me every day that disability's irrelevant, because I'm Dad. I'm his father. And you can be a father in a wheelchair or you can be a father walking around. I know if I hesitate I lose. You can be a father in a lot of ways.
Voice-over: In 1983, Roberts co-founded and became president of the World Institute on Disability, a think tank which focuses on disability policy in an international arena. While there, he was awarded a MacArthur Foundation Genius Grant. In the national arena, one of the disability rights movement's greatest legislative achievements was the Americans with Disabilities Act. It bars discrimination in employment and guarantees access to public buildings, transportation, and communication services.
President George Bush: And today's legislation brings us closer to that day when no Americans will ever again be deprived of their basis guarantee of life, liberty, and the pursuit of happiness.
Voice-over: But laws are one thing, their implementation is another. Roberts was reminded of that one day on a visit to Washington, DC. He was scheduled to appear live on CNN TV. The man who was instrumental in the first curb cuts in the nation missed the interview. Why? Right in front of the Capitol Building, he had to search for a curb cut.
Ed Roberts: I think as we train professionals, architects, and others who work on this, they need to understand better what barrier-free design really means. It's good for everybody. When you put a curb cut in, not only can you get around, but so can strollers and all kinds of other things on wheels get around. So when we changes, it's often for a large group
Demonstration: Real health care for all.
Voice-over: There are still other obstacles. They want the billions of dollars spent on shutting people away in institutions to be spent on attendants and assistive technology. Then, more of them can become productive, tax-paying members of their community at less cost to society and to themselves.
Ed Roberts: Right now, 75% of us are unemployed. Staggering figure: 75% of us. We have to show our society that disability doesn't affect work. If you're motivated to work, no matter how disabled, you can do a good job. You might need a little technology, you might need a little help, like personal assistants, but you can do the job.
Voice-over: There are many besides Roberts showing that they can do the job. And it doesn't necessarily require expensive technology. Hale Zukas is a policy analyst for the World Institute. He's been a major player in access to public transportation including making elevators operable without the help of an attendant.
Co-worker: I need to know what dates you were actually in Arlington and in DC.
Voice over: Sometimes he needs an interpreter. Sometimes he needs a conversation board to express himself. But he's shown that like streets without curb cuts, those are limitations that can be overcome.
Voice over: Yanina Sikah became totally blind as a young adult. Each day, she comes to work past a chirping streetlight. It lets her know when to cross. Those lights are partly the work of the Center for Independent Living. She manages WiTNet, which puts people with disabilities on the Information Superhighway, and her job has been made possible by a talking commuter.
Voice-over: But for all the progress that's been made in legislation and technology, society's myths still hold fast.
Ed Roberts: And our number one issue is still old attitudes towards us. And those old attitudes see us as helpless and unable. And disability can make you very strong and very able.
Larry King: Okay, we're back. If you wish to talk to Ed Roberts, victim of polio.
Ed Roberts: Not a victim.
Larry King: Not a victim.
Ed Roberts: Not a victim. I think that's a real misperception
Larry King: What is the correct perception?
Ed Roberts: I was... I had... I was disabled by polio, but I am not a victim of polio in any sense of the word.
Voice-over: Technology, Roberts thinks, can level the playing field and help change those attitudes.
Ed Roberts: When I got my power chair, I didn't realize how much how much it would change me and the way I was perceived. When you're pushed up, people talk to the other person. And all of a sudden people had to directly with me. Not only can I go wherever I wanted to go when I wanted to go, people didn't overlook me. They might look above me, but they had to deal with me directly, and that was very powerful.
Senator Tom Harkin: What Ed Roberts has done, I think, for the disability community, is he has gone to law makers and leaders in legislation and in the business community to show that even someone who is severely disabled, like Ed, can be mobile. He's smart as a whip, he can get a job done, he can organize, he can communicate effectively. And there's no reason why he should be discriminated against.
Ed Roberts: A lot of years ago, I decided that people were going to stare at me, and it was a lot better if I decided I was a star rather than a helpless cripple. We can change a lot of our own attitudes that way.
Voice-over: For all of his accomplishments, Roberts like to say that he's not a superhero, just a role model, living proof that severely disabled people can be masters of their own destinies.
Ed Roberts: Hey, we are here.
Ed Roberts: And we are not going away.