1

Civil Rights/ Draft One

My name is Ed Roberts. I'm the President of the World Institute on Disabilities. The Institute works on Disability issues on an International scale. I'm also the recipient of a Mac Arthur Fellowship for my work in establishing Civil Rights for people with disblilities.

I would like to begin when I became physicaly disabilied at 14 years of age.with polio. This was in 1953, two years before the Salk Vaccine. Within two days I went from a child who was achieving independence to a patients and to a label of a helpless cripple. Within those two days I was to start using an iron lung, which I still use, to breath. My mother went to the doctor to ask him whether I would live or die. The doctor looked at her and very patronizingly said, "Maybe you should hope he dies because if he lives he'll be nothing more than a vegetable for the rest of his life."

I am proud to appear here today as an artichoke. It's one of my favorite vegtables. It's a little prickly on the outside with a big heartinside.

I give you this example from my life because it shows how stereotyps of people with disabilities is used by professional to make judgements on peoples futures. This still goes on today. I hear about it over and over again all over the worldddire predictions on what a persons potential will be. It is very clear to me what these predictions are based on, it's whats called "handicappism," a very fundamental prejudice in this country and around the world towards what it means to be disabled. It is a stereotypical response much like other "isms" and one that is not well recognized. It is based solely on the disability with little to do with the person.


2

In fact, I've learned, as have others, to use the stereotyps. If someone looks at someone like me and only sees the wheelchair or the respir: ator, they are in trouble. Because by only looking at the equipment people give up looking at the person with disablities and become open to manipulation. This method of manipulation is powerful, as the multi-million dallor charity industry knows. It is the perception of weakness when you're not at all weak. It is a terrible thing to do to people, manipulate them by using stereotyps. But too often decisions about disability issuesare made solely on sterotyps.

Sometimes people can look you in the eye and see nothing because they are afraid. Disability creates its own stigma, it's own fear. People react to it in differrent ways, but most often it manifests itself as prejudice.

Doctors and the medical industry are amoung the worst in this area, maybe as they see people at their worst, when they are sick. The diagnosis is often the most importantthing and they are excited about their diagnosis. But after that, they often have no idea of what to do, especialy if there is no "cure." Maybe we expect too much out of doctors. Most have great technical skills about the human body, but society sterotyps doctors to be knowledgable aboutissus they may know little about, such as quality of life for people with diabilities. People, whether they are on respirators, whether they have been labled mentally retarded, or whether they have been seen as not really being a whole person have gone on to lead quality lives, no matter what some professionals have told them.


3

I have experienced all of these prefjudices in my life and I contine to experience them. In restaurants, for example, the waiter or waitress will often ask my attendant what I would like to order, as if I am unable to make my own desision. I, of course, no longer tolerate this, I speak up very quickly. I have learned from experience that you have to be an advocate. You have to advocate foryour rights and your ability to live your life the way you want.

One of the real ironies of life happened when I was 18 years oldand I went to the California Department of Rehabilitation to be a client. I was immediately rejected as too sever ever to go to work. Well, I became the director of that department 10 years later.

Even institutions to help people with disabilities, and especially these institutions are caught in these fundamental prejudices. Somehow the feeling is that because you have a disability and the more sever that disability is perceived to be, the more likely you are to be an object, and an object of stereotypical response.

I can remember sitting on my fathers's shoulders when I was a youngster at a public meeting were there was a woman with cerebal palsy. She was wearing braces and was moving about. I remember staring at her and thinking, Wow, now that's a different person, somebody kind of interesting. Immediately I was told by my father not to stare, no explanations. Now what is a child to perceive? The perception that your not to look at some people, that there is something there to be afraid of, or that person is bad. Society cultivates this kind of attitude in the very young

Baby Doe and issues surounding young children with disabilities demonstrates the continued importance society places on its stereotyps and how if anything


4
these prejudices have become stronger. When people got polio in the early days there was no hestation about saving these children. If I had been one month old, two months old or just been born, investment after investment would have been poured into saving me. and rehabilitation. Today the issues about young people with disabilities and old people with disabilities are going to be similar with the big question being quality of life.

I have been on a respirator for 33 years and it has not slowed me down; in fact, if anytheing, it gave me a cause when I was kind of young. Unfortunately, the kind of strength, motivation, and family support I had is not true for all people. People who are fundamentally seen as less than they are often accept that they are less. It becomes a very self-fulfilling when people are shut-in or put away in nursing homes. They become the stereotype. What happened? People begin to hate themselves, just the way Blacks and other labled groups have done in the past.

People have to begin to reshape their own attitudes, be positive. The family becomes critical in the process. I was very lucky to have had a stronge mother and father, despite their prejudices. They soon felt my potential was about as good as anybody's. In the begining though, they had to be the advocates and they taught me to be my own advocate in the future.

Think about our language. Two days ago I was going down the street and someone came up to me and said, "Oh, you're an invalid." An invalid? I looked and said" No, I'm not an invalid, I am a person. I am a person that happens to have a disability."

The word handicap, my understanding is, began as cap in hand, begging.


5
Shut-in, deaf, and dumb, all the words that English uses to talk about people with disabilities are prejudicial words. Hopefully we can start to use new words that communicate a condition not a person. When I talk about disabilities I talk about people first.

Eight years ago I became a Father, which was a little bit of a shock to me because I had been told that it would never happen in my life, not because I couldn't do it, but because everybodyaround me was so uptight about sexuality. Luckily, I learned about it myself. I happened to go to the University of California at Berkeley which is a very free place as I found out. I was as sexual as anybody else, so much for that myth about people with disabilities.

In the same vein are the myths told to parents of children with muscular dystrophy (MD). There are over 50 different kinds of MD. Doctors diagnose MD young often when children are 4 to 5 years old or even before. Doctors are quick to tell parents that these children are going to die by the age of 15. The one thing that the medical profession is not telling parents is that if the children use a respirator they might live a normal life. The medical Industry does not give people a choice, they tell them a choice that government, insurance, and family readly accept. I am not talking about all professionals but this is an accepted pratice in dealing with MD.

I am going around the country and the world, talking to doctors and other professional, letting them see me as a person that has lived a quality life and a good lifewhile using a respirator.

I am very upset about this kind of decision making by doctors. It is not only an ethical and moral decision these people are making, but a Civil Rights decision. It concerns people's right to be informed and the right to know they can go on living. People have the right to make their own choices, the parents and the young people. Often for families and individuals with MD, they are excluded from their rights and people die, victims of prejudice


6

It seems to me very clear that unless we attack this issue of prejudice this country wil continue to have contraversies around Babies Doe, Elderly, and other typs of disabilities. Today, people are still not informed, parents do not know all the facts and options. When I got polio it was like a thunderbolt came into my family. It was like all the protections around you disppeare and what else could happen. There were very few people around then that had any knowledge of what it meantor were organized to give support.

One of the things I quickly learned was the difference between being severly disablied and being motovated. This was immediately shown to me when I was told by doctors that I could not have a powerwheelchair, in fact theysaid it was impossible as I did not have the kind of muscles needed. Well, I fell in love and it was ridiculous for me to have to take an attendant everywhere to push me when I wanted to be alone with my girlfriend. I learned to drive a power chair in two days, even though I didnot have the muscles. I was highly motivated and I did it.

Sometimes it is forgotten that humans can do incredible things despite the prejudices, despite the dire predictions, and despite the barriers, if they given the help needed, not what somebody thinks people need. In this case, all I needed was someone to adapt the wheelchair for me, to turn the controller around; it didn' cost anything really and maybe it saved thousands of dollars in paying people to push me around.

Rehabilitation technology is far in advance of 20 years age. It has developed machines to help people speak and power weelchairs that give people incredible mobility. Yet a lot of those things are not available to people. In addition, devices or particular brands of products are pushed on people when they want another type or brand. People with disabilities are trapped in a billion dollar a year industry that doesn't answer their needs to get in the mainstream,


7

Not being well informed and not getting information to make choices is one of the key issues around Baby Doe and disability in general. Baby Doe had Down's Syndrome and there are many new problems with raising a Down's Syndrome child. But Doctors and parents do not know what a childs potential might be, gueess can only be made but they are only guess. No one can tell how much motivation a person over their lifetime will have or what their quality of life will be.

At first it was common prejudice that people who are labeled Mentaly Retarded could not learn. Now it is recognized that the professionals didn't know how to teach. It takes a lot of sensitivity in teaching them and self-help becomes a critical part. Peer counseling and getting people involved in helping others is very important in intergrating and succeding in society. It contributes to the first step of liking yourself.

Disablity issues are moving into ethical issues that are goingto get more and more difficult to solve, especisly with the prejudical attitudes around us. Unless these old attitudes are attack now they will haunt all of us as accident, dieses, and old age become personal problems. I don't care if someone doesn't like me, but they better respect my rights. I do have the right as any citizen to equal opportunity, to have a family, and do all the things that I can do with my life. Everyone has barriers of some kind to overcome, but I've watched thousands of young people with disabilities being turned off quickly to life, their families ruined because ofprejudice and not standing up for their rights. and beliving they are going to be vegetables. What a thing that is to do to someone starting out

One out of every 16 babies has a birth defect, 250,000 babies are born with brith defects in this country every year. That's alot. I don't know what that means because I'm not sure anymore. I do not look at myself as a person with a sever disability because I have learned to live with my disability, which most of can do. Most of us learn what our limits are without someone telling what they are before we find out ourselves. Why should these children be told different?


8

Maybe we expect too much out of doctors. I have a feeling that they have been trained to act like gods. In fact they are as human as any of us. And, when it comes to disability issues, most of them don't know what the hell they are doing. They feel as helpless sometimes as parents of a child with disabilities, but at the same time society and doctors themselves think they have to render judgment.

As the laws and society change, more people with disabilities who are living good lives will come forward. People can see thatyou can lead a wonderful life with even the most sever disability. Besides being role models to younger people with disabilities these successful people with disabilities can be a source of information for families to make choices.

I feel that the adoption Laws need to be changed to allow for children with disabilities to be adoped were the natural parents can't cope. California had a landmark case that I was involved in. A young man of 14 who was moderately to severly retarded needed a heart operation. His parents decided it was better that he died, but he didn't. He lived. The parents had given in to societies prejudices and wondered what would happen to their son when they died. Which made no sense as they had put him in a state hospital when he was born. The case was brought to court as there was a family who wanted to adopt him and give him the attention he needed. The boys natural parents fought this. It was incredible. Finaly, the young man was adopted is now working, living his own life and becoming a role model for others. To bad a lot of children don't get such a happy ending.

The process of developing good role modelshas come along way. People with all kinds of disabilities are out there doing fine. These people are examples rather than reflections of stereotypical and fearful responses that the general populas has around disability.


9

I'm obviously very much in favor of intergration. I was lucky, there was no special school in my community.so I couldn't go to one. I went to my regular high school. It wasa little isolating, but I can imagine what would have happened if I had been totally segregated.and then had to move back into the mainstream of society

It is so much better if we include people from the very beginning in our educational system. Society can understand that diversity is wonderful, that people are not the same. One of the things that makes this country unique is how many different types of people there are. Some are faster, some throw better, someare more intelligent; in fact, everyone is different. That difference is enriching us and makes us strong. Yet, society often rejects people because they are different.

There is a recent case that came before the United States Supreme Court in which a young man with cerebal palsy was kick off a Delta airliner because his disability "might" be offensive to other passengers. The court said that Delta could through him off because the flight he was on was not federaly supported. He sued based on 504 and lost because of the Grove City case. Even though airports recieve government money.

These cases and others like them show the depths of prejudice in our laws and society in general. The Delta Case is obvious discrimination. Yet, because of the Grove City interpretation, the simple langage of 504 was ignored and equal opportunity droped. A lot of people need to be educated especialy legal medical professionals about basic constitutional rights. This can only come about with the intergration of people with dis ablities not be setting up special schools or workplaces that are based on segregation, even with the best of intentions Integration is a tool and a critical part of the process of society excepting differences. This could lead to an attitude where"some children have disabilities and others don't.


10

The next 10 years in the Civil Rights/Disability field are going to be exciting. A lot of recent actions have hurt us temporily but in the long run will make the movement stronger. More people are getting mad and becoming advocates. They are not going to tolerate it, literally. Society is going to treat people as whole people not a disability. People with disabilities have a right to fulfill whatever potential they have and decide how to fulfill it. People have the right to not be subjected to handicapist practices. These rights are fundamental to any society that has any pretenses of democracy.

Today people are still being released from long term care hospitals that have become prisons in all but name. Segregated schools and workshops that belong in the Middle Ages are being closed and need to be. People with disabilities will finaly be able to make mistakes like everyone else

The attack on basic human and Civil Rights of people with disabilities is still continues by not appling 504 to AIDS victims. These citizens are disabilied and they deserve the protection of the law. As these people and others such as the elderly are excluded from society join together to protect their rights a new and stronger coalition of power is going to be built.

Here in the United States issues like Civil rights and helping peoplle to survive in a hospital enviroment becomesimportant. In the thrid world for many people with disabilities the issue is the right to eat and just survive. The only option for many is to beg.

The World Institute on Disability comes from the worldview of people with disabilities. Most people at the people are disabiled and have been active in the Civil Rights Movement, which changed a lot of people in the process. WID is active not only in the United States but around the globe in places like China, Japan, West Germany Great Briton, Nigarauga, Canada, Australa, and others. The basic philsophy is one of self-help and empowering individuals to help themselves, issues common to All people with disabilities.

In this country, WID


11

WID as a research and public policy institute does action-oriented research that hopfuly lead to a rational public policy, a policy that helps individuals not administrators of programs. One of the first projects that WID completed was a national study on attendant care. There are thousands of people, not just the physicaly disabled who require service, the blind need readers, the hearing impaired need interpreters, and the mentaly retarded often need someone to help them move through a complex society. But people who need these services need to be in charge them to be effective. People who help should be paid by the person who is being help so they can live their own lives and not be the perminate object of charity

Some people think that issues around disability is medical judgment or that it is not a case of Civil Rights. But to place one individual in charge of another for no crime is a crime and violates the very idea of human rights. I am very clear on prejudice and its place in this. and without an enforcement of fundamental rights under 504 there is going to be more of it, especialy with for-profit longterm care institutions.

This country has been and should continue to be a model for the world in terms of enforcement of rights of people with disabilities. If our system is the best the world will continue to look to this country for humanitarian solutions.