Ed Roberts, Activist
60 Minutes Segment with Harry Reasoner
Ed Roberts: First of all, I tried to kill myself.
Zona Roberts: By not eating.
Harry Reasoner: But somewhere at around 50 pounds, the boy who had gotten polio in 1953, just before they found the vaccine for it, somewhere about then, Ed Roberts decided to live.
Ed Roberts: There are very few people even with the most severe disabilities who can't take control of their own life. The problem is, the people around us don't expect us to.
Harry Reasoner: Travels... is highly respected by his peers, a standout in his field of endeavor. He got one of those big MacArthur awards, a large chunk of money designed to enable geniuses to spend five years thinking about things without money worries.
Harry Reasoner: He's had an active romantic life. In a way, he's had it all, even a divorce. Why is his story worth telling? Well, to begin, he spent a critical period of his youth quite seriously and persistently trying to commit suicide.
Ed Roberts: First of all, I tried to kill myself.
Zona Roberts: By not eating.
Ed Roberts: You have to be pretty creative when you're paralyzed from the neck down.
Harry Reasoner: You can't even reach out and unplug something.
Ed Roberts: Right. Right, and you've got all these nurses and doctors trying to save your life around. And so the thing that I chose...
Zona Roberts: Reluctantly, sometimes, trying to save your life [Laughs.]
Ed Roberts: The thing I chose was just. I was not hungry. I starved myself
Harry Reasoner: There were people who thought Ed Roberts had made the right decision. His mother Zona remembers how happy she was the night it became clear his disease was not going to kill him and what the doctor said.
Harry Reasoner: They told you it might have been better if he died?
Zona Roberts: The night of the crisis, and I was thrilled that he lived, and our doctor at that time said, "What do you mean you're glad he lived?" He was his voice was just full of tension. "What do you mean you're glad he lived? How would you like to be in an iron lung the rest of your life? What was this? What life... just be over. It's nothing."
Ed Roberts: And I literally went from like 120 pounds to 50 pounds. I also discovered how powerful the mind is, when you make up your mind.
Harry Reasoner: But somewhere at around 50 pounds, the boy who had gotten polio in 1953, just before they found the vaccine for it, the boy in the iron lung with no ability to move any part of himself below the neck except for two fingers of his left hand. Somewhere about then, Ed Roberts decided to live.
Ed Roberts: And then that last nurse left. A day later, I decided to eat and to live. And it's almost that shocking, because I had to begin my own life. We make such fundamental errors in taking care of people all the time. Think about your own life. If you... if you had people taking care of you, making all your decisions, what is there to life, really? In almost all of social programs we set up take care of us or put us away in institutions to be cared for. And I think once I began to discover that, how important it is to help yourself and to move on from that and to go beyond what people thought my limits were.
Harry Reasoner: The iron lung Ed Roberts still uses looks strangely old fashioned. The device hasn't changed much since he first got used to it. In those days, it defined the limits of his life. To get out of the lung required overcoming fear of the unknown.
Harry Reasoner: When you started going out, you found some reasons to be scared.
Ed Roberts: Yeah, people stared at me. You know, they'd ah...
Harry Reasoner: But you had some dangers.
Ed Roberts: Oh yeah, yeah. I mean, Harry it's, no life without taking risk. And leaving the iron lung and going out on my own and being pushed around in wheelchair at first was a big step for me because I knew that if got in trouble, out in that community I could die, and very quickly.
Harry Reasoner: Polio left Ed Roberts without the ability to breathe. His iron lung breathes for him. To get time out of the lung, he had to learn how to swallow air into his lungs and then to ride in a wheelchair and use a portable respirator that forces air into him. But he still goes back to the old iron monster to sleep.
Harry Reasoner: Robert says that he realized that if his body was impaired, his mind wasn't. He finished high school, then junior college, and in 1963, Ed Roberts became the first severely disabled student to enroll in and then graduate from the University of California at Berkeley. The program he pioneered was so successful, the school made it permanent, and it became a model for other disability student programs around the country. Graduates go on to be financially independent, to leave behind a life of charity and welfare. Ed Roberts says that at the university, he learned a lot in and out of class.
Harry Reasoner: I fell in love, like many people do. We do that as well. And it became ridiculously inconvenient to have my attendant pushing me around in my wheelchair with my girlfriend. It was an extra person that I didn't need to be more intimate. I learned how to drive a power wheelchair in one day. I was so motivated to learn something that it changed in many ways my perception of my disability and of myself. She jumped on my lap and we rode off into the sunset or to the closest motel.
Harry Reasoner: Robert's extracurricular activities led, as you might expect, to marriage and a family.
Ed Roberts: You know, I have a son, a ten-year-old boy
Harry Reasoner: You're a natural son?
Ed Roberts: Yes. Yes, he is
Harry Reasoner: That's something that comes up to the outsider...
Ed Roberts: It sure is.
Harry Reasoner: immediately, right? How do you have a natural son? I mean...
Ed Roberts: Well, I'm a very sexual person. I'm never... I've never lost that. I thought I did in the beginning. People told me I'd lost it.
Harry Reasoner: Sensory nerves stayed even when motor nerves are gone? Is that...?
Ed Roberts: With polio. The thing is that every person with the disability is a little different.
Harry Reasoner: Hmm. But you?
Ed Roberts: We made a conception.
Harry Reasoner: You made a child in roughly the same way that we all try?
Ed Roberts: And I enjoyed it. [Laughs.]
Harry Reasoner: It's frequently kind of fun
Ed Roberts: Yes, it is.
Harry Reasoner: Ed Roberts says that it's essential to see the disabled as whole people who marry, as he did, and get divorced too. He shares custody of his son, Lee. Enhancing his self-image and lifestyle, Ed Roberts says, led to a new idea, a concept and model for living independently that has opened up whole worlds for the 37 million disabled people in this country.
Ed Roberts: There are very few people even with the most severe disabilities who can't take control of their own life. The problem is that people around us don't expect us to. We built a system, a political system, and a system of public policy based on old attitudes that actually allow us off the hook, to have no expectations, that believe that we will not work or participate in our... in our communities when in fact we've discovered that the reality is just the opposite.
Harry Reasoner: Roberts' in a group of fellow disabled students who call themselves the Rolling Quads set out to prove they could live outside institutions. They established the first CIL, the Center for Independent Living. Today, there are hundreds of centers around the nation and the world. The centers preach an end to the segregation of the disabled from the rest of society and the end of the separation of the kinds of disabled from each other, from the blind and deaf, to the paralyzed, and those impaired by disease and birth defects.
Harry Reasoner: In this class, group of people with a variety of such handicaps learn how to live on their own, how to manage their own money, how to write a check.
Harry Reasoner: Funded half by the government and half by private donations, the Berkeley Center has helped over 140,000 people over the last 15 years to find jobs, housing, attendants, and transportation. It has transformed Berkeley, once the nation's radical capitol into an international center for the handicapped.
Harry Reasoner: Ed Roberts says that the most noticeable change brought about by the centers is that the handicapped, even the most severely disabled, like himself, are no longer shut away, an attitude toward the disabled, Roberts says, that was fostered by the way charities raise money.
Ed Roberts: You know there's a whole science around charity and how you get people to give, and it's one of my pet peeves over the years is. The fact that they try to make you feel guilty enough to give money, but if you flash someone like me, you feel too guilty, you don't give anything. It's a real... It's a science that I think has caused us a tremendous amount of problems because it... it... They have to set up a bad attitude. They have to say, "Look at these poor... these poor, helpless cripples. Don't you feel sad... ?"
Zona Roberts: Aren't you glad this hasn't happened to you?
Ed Roberts: Yeah, "This could happen to you." And consequently...
Harry Reasoner: If that were me, I'd rather be dead.
Zona Roberts: Right.
Harry Reasoner: Yeah.
Ed Roberts: Exactly.
Harry Reasoner: Roberts' success with developing independent living resulted in his appointment in the mid-1970s as Director of California's Department of Rehabilitation, the largest stage agency of its kind in the country. Roberts left his state job in 1983.
Woman on the phone: World Institute on Disability...
Harry Reasoner: He co-founded the World Institute on Disability, a think tank that serves as his current headquarters. Its purpose? To promote the civil rights of the disabled, to get them out of institutions.
Ed Roberts: Once doctors have learned how to save our lives – and they're awfully good at it now – what is there for us? What's a life living in an institution or a nursing home someplace? Not much of a life. No social life, no real ability to move on. Yet, we spend billions and billions of dollars on these. The fact of what we have to do is break that money loose from very strong special interests and move it into the community and deal with quality of life issues. We do not want to be segregated in the traditional sense.
Harry Reasoner: What do Ed Roberts and the disabled rights movement he is part of want? They want access to public buildings, workplaces, and most of all public transportation.
Ed Roberts: Whoa Give me a pull, will you? Give me a push, Lee. Back up. All right.
Lee Roberts: Ouch.
Ed Roberts: I got him right in the foot.
Harry Reasoner: They want the right to live outside institutions, they want an end to discrimination in employment, and they want long-term health care that includes well-trained and well-paid attendants so they can function in the world of the able-bodied.
Harry Reasoner: There have been changes, but one-third of our urban transit systems still don't have an accessible bus. And there are 18,000 post offices that many disabled can't get into. But through demonstrations, lawsuits brought by the movement's legal arm and political lobbying that crosses political lines, the access of the disabled community continues to expand. In fact, after a long struggle, the airlines have allowed the disabled onboard, enabling Ed Roberts to become a frequent flyer and to take the independent living movement and the notion of civil rights for the disabled overseas.
Ed Roberts: Easy way to carry me on.
Harry Reasoner: Shortly after we talked to him, Roberts headed for France to lecture, to meet President Francois Mitterrand, to help set up another independent living center, and to take in the sights of Paris.
Ed Roberts: We're more than halfway. Wow. I feel like I'm in the forest.
Harry Reasoner: A question comes up when you follow Ed Roberts around. Isn't he maybe a special case? Is it practical for all the disabled to be provided with the quality and equality of life that Roberts independent living movement demands?
Ed Roberts: What we are is not super cripples but we are role models. We are examples of people who even with the most severe disabilities have been able to... to lead fulfilling lives in the community and work, have families, and overall play significant roles.
Harry Reasoner: So you're saying that if. If we're society, we gotta live with you people and your cumbersome machine, your lousy wheelchair...
Ed Roberts: We have to live with ourselves.
Harry Reasoner: ... and your demands and so on.
Ed Roberts: Exactly. And I might even go further and say it might even be good for you. [Laughter] Because, I mean, talk about equal opportunity club, this one is it. [Laughter]
Zona Roberts: I think...
Ed Roberts: Anybody can join us at any time.