Thank You, Ed Roberts

And we’re going to develop leadership, that has a fundamental difference and that is, it's inclusive . It believes in people, and in our strengths together . And we are going to change our society. Ed Roberts

The 23 year anniversary of the signing of the ADA was July 26th, 2013. I want to take a moment to thank Ed Roberts and all of the leaders in the disability rights movement past and present who have worked so tirelessly to ensure Equality of Opportunity, Independent Living, Full Participation and Economic Self-Sufficiency for ALL people.

As the parent of a 13 year old disabled son how is it possible that I only learned about Ed Roberts this year? I learned about the Independent Living Movement with my son, who is still fighting for access in 2014. It was incredibly moving to watch him watching Ed Roberts, just incredible. His name should be as familiar as any one of the great Civil Rights leaders because his contributions to the world were so significant. His vision and advocacy for full inclusion of people with disabilities started at a time when many disabled people were routinely forced into institutional care with little or no agency in their own lives.

He is a role model whose strength and leadership changed everything . Watch his videos, listen to him speak , and go out and make sure we are living in a world that is just, inclusive and accessible to each and every one of us.

The history of the Disability Rights Movement should be taught in all schools. It is vitally important that leaders with disabilities are accurately represented in history and sadly, right now, there seems to be more in schools about “Disability Awareness” than the social justice component of fighting for access and inclusion. If you are a parent of a child with a disability, start learning about Ed Roberts together now. You can read Henry’s take on that  here.

Read more about Ed Roberts on The Minnesota Governor’s Council on Developmental Disabilities  and highlights from some of his speeches can be found here.

Transcript 1981 speech that Ed Roberts gave at the Research and Training Center on Independent Living at the University of Kansas

The foundation of what we buy together, of how we help free
the millions of other disabled folks who have not yet come out,
will be political and the philosophy we have developed together,
which is a fundamental positive belief that everyone has a future.

We recognize very early that the number one precept of Independent Living had to be
that we had to teach ourselves out a fight. We had to learn the rules of rehabilitation,
of welfare, we had to learn them better than the agencies knew.

All the programs have been set up, really aren’t the most important factors. They help us survive. But, when we help each other, when we model for each other, when we
recognize, peer counseling, peer modeling, the kinds of things that we can do together
and positive attitudes that we’ve developed and the kind of future that we’re beginning to develop for all of us and the folks that are going to come along,
that’s the most important thing.

A few of us, got a whole lot, without having real grassroots organization
uh… that we don’t have the organization yet to hold but we won over these last few years. And I’ve redouble my efforts and I know that a lot of you have to
go out involve more people.

I urge you as leaders in the movement, to be leaders in the political movement as well
to hold our political leaders accountable, but support those folks that have gone out
front for us.

If we’re going to turn this thing around, we’re gonna have to get our people out to vote
and we’re going to have to educate them and we’re going to have to figure out
how , what kinds of voting patterns they have. Not just register them,but educate them
and then vote in blocks, and begin to make some difference in elections. And that’s possible now, may not have been so much in the past, but there’s a lot of consciousness now. I really believe that we can win some elections for folks.

And when there’s maximum danger, and when our programs are in the most jeopardy, there’s also maximum opportunity. To make changes in them, to fight for what we know we need, to make them more responsible for the needs of our people to and let’s take advantage of that.Let’s figure out some alternatives, let’s not just be naysayers.

And we’re going to develop leadership, that has a fundamental difference
and that is, it’s inclusive . It believes in people, and in our strengths together .
And we are going to change our society. And that that severely and profoundly disabled person is going to come back into our community and when they do, there’ll be an Independent Living Center there ready, to help them find housing, to help them learn how to fight for themselves and then to join us.

Transcript from 1989 60 Minutes Interview”

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.

Student: T-H-R-E-E

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 cofounded 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.

[people laughing]

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.

<< Back to Ed Roberts, Activist

 Free Wheeling

"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." Ed Roberts

Ed Roberts: I’ve had people come up to me and say I’d rather be dead, than be like you know for a
and they miss 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.
Narrator: 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 into their communities not shut away in institutions.
But when he first contracted polio at the age of fourteen that idea was a long way off.

His mother’s Zona Roberts remembers all too well the doctor’s attitude when he
told her that Ed would live.

Zona Roberts: The next morning I said to the doctor I was glad he had survived, and
he wanted to know why. Would i want to spend the rest of my life in an iron lung? The poor man was horrified.

Narrator: Roberts himself did not want to live.

Ed Roberts: Well, I decided to die in the beginning. People told me basically that I would have no life. When your in an iron lung and you’re paralyzed from the neck down,
in a hospital where there whole job is to save your life you’ve got to be pretty creative to kill yourself.

Narrator: Roberts starved himself down to fifty pounds and then the last of the special
duty nurses left their post.

Roberts: The next day I decided to live and I started eating. And 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 or dying and that I really wanted to live and to take control of my own life.

Narrator: 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 sit in a 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 hook-up.

Ed Roberts: So I can remember wheeling down this for the first time in 1962
and there was a demonstration.

Narrator: Roberts convinced a skeptical University of California to admit him.
He became the first severely disabled student to attend. He had to live in a
Cowl Infirmary, the only place big enough for his 800 hundred pound iron lung.
Newspapers headlined the conventional wisdom. He proved them wrong eventually earning a Masters degree and soon other quadriplegics joined him on campus. They call themselves the Rolling Quads and began inventing a new world for themselves.

Roberts: We uh..realized we could change some things. First thing we needed to change our own attitudes about ourselves. Be proud of who we were and what we were and go out and change it for others and for ourselves. The most important part of that is working with other people. Moving 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.

Narrator: 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 aide students with disabilities. Hundreds have earned their degree since then, without living like patients in the infirmary.

Ed Roberts: What’s it like living here now? Is it very different?

Narrator: Naomi Amenda is a senior.

Naomi Amenda: It is pretty much the only place I’ve ever been where I can be kind of anonymous as a disabled person. 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 it’s kind of nice in a way because it takes the pressure off. You don’t always have to be an activist for yourself.

Narrator: Roberts and his friends realized that access to an education was only a beginning. They wanted to leave the campus, have jobs, and participate in their
communities like everyone else.

Ed Roberts: And to recognize that we didn’t want to live in an institution. I remember one dean at the university said, “Oh, you’ll finish your PhD and then you’ll live in a nursing home. I said no, that’s not the plan. We’re here to change that whole idea.

Narrator: 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 is very empowering and powerful. And then it becomes, it catches on with other people. They see well, if he can do that, why can’t I?

Narrator: They set up a place to spread the word and providing 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? Help people learn how to make their own decisions in life. And you know what. It’s that simple.

Narrator: In 1975 Roberts had caught the eye of Governor Jerry Brown, who put him in charge of the California Department of Rehabilitation and it’s twenty two hundred 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 anytime I needed to move ahead 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.

Narrator: Like falling in love.

Ed Roberts: And all the sudden it was ridiculously inconvenient to have my attendants pushing me around. It was a real hinderance to intimacy. And being a highly motivated
I decided to hell with all those comments that I couldn’t do it. I needed it for my life. And they got me the power chair and all we had to do was turn the controller around so I could pull. And I bounced off the wall a few times then she jumped on my lap and we rode off into the sunset.

Narrator: Roberts eventually married and fathered a son, Lee, now sixteen years old.
Roberts is divorced but shares custody.

Ed Roberts: I was told I’d never be able to have a child. It was one of those myths again. It was finding the right woman and the right sense of passion, and getting together, and we had a kid. And he’s totally the joy of my life. He keeps teaches me every day that disability is totally irrelevant, because I’m dad. I’m his father. YOu can be a father in a wheelchair or you can be a father . You can be a father in a lot of ways.

Narrator: 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 communications services.

President Bush: Today’s legislation brings us closer to that day
when no Americans will ever again be deprived of their basic guarantee of
life, liberty, and the pursuit of happiness.
Narrator: 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 professional architects and others who work on this, they need to understand 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 can get around. So when we make changes it’s for a large group.

Narrator: There are still other obstacles. They want to billions of dollars spent on the 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 seventy five percent of us are unemployed . Staggering figure, seventy five percent of us. We have to show our society that disability doesn’t effect work. If you’re motivated to work, no matter how disabled, you can do the job. You might need a little technology, you might need a little help like personal assistants, but you can do the job.

Narrator: There are many besides Roberts showing 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. Sometimes he needs an interpreter
sometimes he’s a conversation board to express himself, but he’s shown that like streets without curb cuts those are limitations that can be overcome.

Yanina Sika 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 Wit Net which puts people with disabilities on the information superhighway and her job has been made possible by a talking computer. But for all the progress that’s been made in legislation and technology,
society’s myths still hold fast.

Ed Roberts: 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 and if you wish to talk to Ed Roberts, a victim of polio.

Ed Roberts: Not a victim.

Larry King: Not a victim you say.

Ed Roberts: Not a victim. No, I think that’s a real misperception

Larry: King: What is the correct perception?

Ed Roberts: I was disabled by polio, but I am not a victim of polio in any sense of the word.

Narrator: 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 would change me and the way I was perceived. When your pushed up people talk to the other person, and all of a sudden they had to deal directly with me. Not only could I go where I wanted to go, when I wanted to go , but people didn’t overlook me. They might look above me,
but they had to deal with me directly and that was very powerful.

Narrator: At a march on Washington disability rights leaders and congressional leaders
alike sought him out.

Senator Tom Harkin: What Ed Roberts has done I think for the disability community
is he has gone to lawmakers and leaders in 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 hopeless cripple.

Narrator: Ed at Lincoln Memorial

Ed Roberts: We can change a lot of our own attitudes that way.

Narrator: For all his accomplishments Roberts likes 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: We are here and we are not going away.

About the Author:

Advocate committed to inclusion & social justice, proud mother of three wonderful humans, and part of the team that started Ollibean.

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