Obstacles

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12 CANADIANS' PROFILES

“Disabled people are constantly adjusting to difficulties that many people face only in a crisis.”

I was afflicted with rheumatoid arthritis when I was three years old. Now, I’m 36. This is a very painful disease, and most of the time it feels like there’s a furnace inside of me. I give off so much heat that I keep my room like an iceberg most of the time. The heat is worst at my joints, and most of them are now fused together. My elbows don’t bend, my knees don’t bend, one ankle and one wrist don’t bend, and my neck is now partially fused. My jaws are partially locked and my spine is extremely inflexible.

The disease is progressive, which means that the fusing will get worse as I get older. Eventually my neck will completely fuse. When that happens I will have to find another way to read and write. That bothers me a bit, but I’ll come to grips with it when it happens.

“I believe in God, and I believe that He has created me for some purpose.”

I’ve usually been alone when the pain has been worst so that I’ve learned how to deal with it on my own. You just go through the pain and you learn to cope the best way you can. I didn’t realize what I was doing during all those years, especially when I was little, but I definitely have developed a skill. I think that is one of the reasons why I have such a high tolerance now.

I keep the reality of my physical condition before me all the time. That way I can remain at peace with what is going on inside. Nothing is going to take me by surprise to the point where I can’t handle it.

I believe in God and I believe that He has created me for some purpose. I am on earth to fulfill that purpose, whatever it may be. I am part of the Kingdom and I have a task to do. If I don’t do it, then there will be something missing in the Kingdom. God is what keeps me going, He’s my strength and I know that nothing can overcome me. I know where my heart is and where my priorities lie.

I find that people have some very funny myths about disabled people. For one thing, they think that we are fragile. I find just the opposite, that most disabled people are healthier than the general population. If we neglect our health, then we have nothing to fight back with. We have to have a very strong constitution just to be able to deal with our disability.

“Most disabled people are healthier than the general population.”

The other myth is that disabled people are emotionally fragile, and, therefore, they must be protected from the harsh realities of life. But that doesn’t make sense. Disabled people are constantly adjusting on a daily basis to difficulties that many people face only in a crisis. So who are the sheltered people in our society? I’m accustomed to a certain amount of pain and suffering because it’s a constant part of my life, but there are times when adjustment and acceptance of that pain seem to be an hourly task. Death is just a normal part of my thinking. None of these things disturb me greatly because I’ve been adjusting to them every day of my life.

“What’s ‘normal’?”

When I cry, people get very upset, and some of them even try to stop me from doing it. What they don’t realize is that crying is one of the few ways I have to get rid of physical and emotional tension. Because of my severe limited movement, strenuous exercise is impossible. My only relief is to cry.

It serves the same purpose for me as does swimming or running for other people.

The strangest thing about disabled people, no doubt you have found, is that we usually think, feel, and react along the lines of normal people, yet people expect us to react differently. It’s funny too because I’ve never considered myself a disabled person. I hate the word and I am considering haunting the guy who invented the words “handicapped” and “disabled”. Normal? What’s “normal”? Tell me what’s normal. On my scale from 1 to 10 the fact that I have so many disabilities doesn’t even fall within the top five slots of what it is to be normal.

A lot of disabled people need to learn their limitations, where and when to expend their energy. We need to discover our capabilities and to identify our priorities. Once you get a firm grip on who you are, then it takes a lot to destroy that image. Your horizons suddenly take on a wider scope, you are open to change, new ideas, and you realize that there is a real joy in being responsible for yourself and in being accountable for your decisions.

“There is a real joy in being responsible for yourself.”

“Most of the time I can’t even buy an ice cream cone.”

When I was almost 24 years old, back in 1953, I contracted polio. It was a real shock, a very bad experience at the time, because it happened suddenly and I didn’t know anything about the disease. Now I’m 95% disabled, with only a little use of my right hand, and that’s all.

“I try my best to be happy most of the time.”

For a long time I was miserable about my condition, but now I’m getting used to it. I try my best to be happy all the time. Lately, I’ve tried to train myself to lead a normal life, but the lack of money makes things very difficult.

My wife does not work steady, so that our total income per month isn’t very much more than $550. That’s not much when you’ve got five people at home. A pair of kid’s running shoes here in the Yukon cost $25. Bread is a dollar a loaf. A can of soup costs 49¢. It’s so hard to get by. I can’t even take my family out like ordinary people can. If the kids ask me for money I just have to say nothing. I can’t afford it. Most of the time I can’t even buy an ice cream cone. That really hurts me.

There are so many things I can’t do because the money isn’t there. I can’t even afford a phone and I need one badly. I think that disabled people should all have phones because it’s the only way that we can stay in touch with other people.

We can’t go anywhere like normal people can. I’d like to have a

fund for transportation, so that I could just ride around, just to get out of the house. Right now I just stay in year round. You can’t ask people to take you some place because gas costs so much. I don’t want to ask other people to pay for me.

I also need hired help. My wife has a man’s work and a woman’s work because I can’t do either. I need someone to help me take a bath because I can’t even wash and dry myself, I’m so handicapped.

“My wife has a man’s work and a woman’s work because I can’t do either.”

Here in the Yukon we should have a nursing home just for handicapped people. Maybe just 20 rooms. That way we could help each other. We could talk to each other and make it easier for yourself to accept the handicaps. Right now, we just go to the general hospital in Whitehorse, but that’s not right for handicapped persons. Before they design another one, they

should talk to handicapped people about their needs. The bathrooms are all built for skinny guys, you can’t even get in there with a wheelchair.

“I would love to stay in the Yukon. I grew up here, and I can’t get away from it.”

Over the years I’ve had a lot of help from people. It used to be that I couldn’t get along with anybody. It’s hard to suffer, especially when you think about it. But about twelve years ago I became a Christian, and that makes the big difference. Now I’ve changed for the best.

I would love to stay in the Yukon. I grew up here and I can’t get away from it. I just can’t go away, I don’t know why. I know how difficult things are here for the handicapped persons but it’s so beautiful here during the summertime. The couple of months that we have of summer makes up for the winter.

“I would like parents to stop teaching children to pity people who are blind.”

I started to get glaucoma when I was nine, and at age twelve I lost the sight in one eye during an operation. The sight in the other eye has diminished since then.

My biggest two obstacles as a result of the blindness are lack of job opportunities and a frequent difficulty in establishing personal relationships with sighted people. Both obstacles come, I think, from the difficulty that other people have in dealing with my blindness. Employers just automatically discount me because they can’t believe that I can do a job. On the personal level, people exclude me from normal social activities because they don’t think I can function.

I would like to work in the social services. I have already had experience there, first because my bachelor’s degree qualifies me as a social worker, and also because of contracts and projects I have completed. The people who have hired me so far feel that I have an ability to work with disabled persons, and I think that’s true. I have a good understanding of what is needed. But so many employers don’t give me the same chance that they extend to sighted people. That’s all I ask, to be treated on the basis of my qualifications and ability. So many people think I am less capable. Where other job applications start at zero, I start with a minus. And yet it takes so little adaptation of a workplace to make a job possible for a blind person.

My everyday contact with the public suffers because people think I can’t take care of myself. I must constantly remind people of how capable I am. They think I need very special kinds of protection, when that isn’t true at all. They see my white cane and all they can think about is that I need help constantly. But I have learned techniques which make me virtually independent.

“Employers just automatically discount me because they can’t believe that I can do the job.”

It always surprises people to find out that I am a regular skier — cross country — and that I am involved in a theatre group. I’ve also done downhill skiing. Someone follows me as I go down a slope and tells me where to go by referring to the hours of a clock, for example, “two o’clock, or three o’clock”, or by the degrees of a circle.

So many sighted people think that unsighted people can’t do anything. It’s true that we need extra information, but once we have it, we can manage very well. I’ve started taking theatre arts courses. One thing that I like is to have people describe to me what that see — and then I act it out. This makes them very uncomfortable at first. They are not inclined to describe to someone else what they are doing. But I need this in order to participate in my own way.

They also have funny notions about what kind of lives blind people can lead. I have a male friend that I live with, and people find it difficult that I can have a male-female relationship just like anyone else. Many people assume that he is my brother. They hesitate to suggest activities to me for fear that I can’t participate. They just don’t know the many ways that I have of doing normal human activities.

“Except for the fear that sighted people have in my presence, I would forget that I am blind.”

Perhaps what I am saying is different from what another sightless person would tell you. I need to be autonomous, to learn on my own, to act on my own. Everyone is different among blind people, just as they are among sighted persons. But in my case, I would like people to stop thinking of my blindness as a hardship. I love life and I am very happy as I am.

Above all, I would like parents to stop teaching their children to pity people who are blind. They always make their children feel uncomfortable in the presence of blind persons, and that only creates more obstacles for us. Except for the fear that sighted people have in my presence, I would completely forget that I am blind.

We blind people face many problems, no doubt about it, and they’ve been with us for a long time. The biggest problem is obtaining information about public activities. There is so little information that has been transferred onto audio-cassette and into braille. The blind people in Canada need a lot of assistance when it comes to information. But once we get the same kind of information that sighted people have, then we are able to lead normal lives.

“There are no advantages to being deaf.”

Craig Ostopovich, who lives in Toronto, was born profoundly (completely) deaf. His step-brother, Michael Voronstov, is a hearing person born of deaf parents. He learned sign interpretation as a child and now assists Craig to communicate with hearing persons. Michael also served as a sign interpreter with the Special Committee in its public hearings. The following text represents both his thoughts and those of Craig:

I am a hearing child of deaf parents and that makes me quite unusual within the deaf community. My father married for a second time after I was born, and Craig and his sister were born out of this second marriage. My step-mother was quite ill while they were children, and died more than ten years ago. So I have literally been raising the children and running the household fora as long as I can remember. This experience makes me uniquely valuable to other deaf people besides my own family. They look upon me as a wonderful interpreter, and as a strong advocate for their rights in the hearing community. There are very few people that they trust to be their advocate, but I am one of them.

Craig’s great obstacle is lack of communication with hearing people. It keeps him away from education, away from sports, and away from many everyday situations that hearing people take for granted. This is the greatest obstacle that all deaf people face.

He is special because he lives with a deaf family, and with his sister and me who are skilled in sign language. So Craig always had a great deal of communication at home. For him, deafness is a very natural thing, and for the longest time he felt sorry for hearing people because they couldn’t use sign language. We really encourage this attitude in him.

“Craig’s great obstacle is lack of communication with hearing people.”

He has a very inquisitive mind. If you spent a day with him, he would drive you crazy by early afternoon with all of the questions he asks. Again, this is something that we have deliberately encouraged. The frustrating thing is that he doesn’t have the language to ask the question which he has formed in his mind. Other than gesturing, he just can’t get it out. Sometimes he gets so frustrated that he screams at me, “Why don’t you understand me?” I just calm him down and ask him to explain it a little better.

Craig really has three levels of sign language. He has one that he has learned to use at home, mainly from his parents. It consists of gestures that we have all learned over the years. At school, he learned another kind of SEE, which stands for Signing Exact English. This is a manual code for the English language which most educated deaf people learn to use. Then he has a third one called Childrenese, which is a sign language which deaf children develop for themselves. It’s a local slang that differs from school to school. Sometimes when Craig’s deaf friends are over to the house, I will see him use all three languages. It’s sometimes difficult for me to express something to them in SEE, so I use SEE to tell Craig what I want. He then translates to SEE into Childrenese to them. When he gets their reply, he translates it back to me in our family sign language. It’s beautiful to watch this whole conversation take place.

There are no advantages to being deaf. You are denied so much, especially in education. Did you know that deaf children are not taken on field trips to the forest, or to the ballet, where there are so many amazing and beautiful things to see. Ballet, especially, is so full of motion and visual excitement. We have taken Craig every year since he was seven to see the Nutcracker Suite, and he loves it. All the movement, and glitter and sparkle. If we have done anything, it’s to teach him to appreciate beautiful things, to get as much value as possible out of what he can see.

But it makes me incredibly sad to think about how much he misses because our society is not open to deaf people. I get angry because we do so much with him at home, but he gets so little from his schooling. He sits and vegetates in school. It’s such a waste of time, and it doesn’t have to be that way. The Americans really know how to teach deaf children, but up here they don’t.

I can tell you right now that I would not be working with deaf organizations if it were not for Craig. I want him to grow up into a world that has many more opportunities than the one his parents knew. I have been offered a job at Gallaudet College in Washington, D.C., which is the finest school for deaf persons in North America. In fact, Washington is a real Mecca for deaf people. That’s where you will find successful deaf doctors, deaf lawyers, and persons who have succeeded in all sorts of other careers. But I live in Toronto, and I want Toronto to become the same kind of Mecca for deaf persons in Canada. I’m involved as an advocate for deaf rights, because I want to make this a better place for Craig and all the other deaf kids that come along.

“He felt sorry for hearing people.”

“Now I have to be conscious of people.”

I am a quadraplegic as a result of a car accident in 1973. Five minutes after my accident I knew I was paralyzed. I woke up in the car and couldn’t move because I had broken my neck. Curiously enough, at the time, the implications of paralysis didn’t hit me. My first thoughts were: What the hack, I can still live.

For about a year I was busy learning all sorts of ins and outs involved with being a quad — a whole set of new skills for living in a new way. But then it hit me. I realized fully that I couldn’t move or do anything. I went into a big depression wondering what was going to happen to me. That’s when I had to make a fundamental decision: Was I going to be crippled for the rest of my life in a chronic care hospital, or was I going to go out and do things? Was I going to be a normal person?

“My first thoughts were, ‘What the heck, I can still live’.”

Most “normal” people are pretty good in their attitudes toward my disability. They understand that there is a problem, and they just stand by in case I need any help. But there are a few who go overboard and try to do everything. And there are others who automatically associate your physical disability with a mental problem. When that happens, I get very angry inside, because the two should not be associated. The worst treatment always results when people don’t give me a choice. If I go out to a restaurant, I’m automatically put where they want me, not where I might choose to be. If I go out to a store, the clerk has to do everything, instead of asking me if I need assistance. There are always people who don’t want me to lead a normal life.

“The worst treatment results when people don’t give me a choice.”

The biggest change in my life since the accident has come in my attitude towards other people. I know now why there are such things as sharing. Before the accident I didn’t really have to deal with people. I could go off by myself and do whatever I wanted, so people didn’t really have any control over my life. Now I have to be conscious of people with me. I have to understand what they expect, and I have to take that into consideration whenever I want to do something. There must always be compromises and adjustments.

There are many things that I’ll never be able to do because of my disability. I try not to frustrate myself thinking about them. I concern myself with the present and forget about the past. Every once in a while, though, I start working on something which, though it seems impossible now, might work out in the future. Before my accident, one of my aspirations was to be an air traffic controller. After my accident I phoned to find out what the qualifications were. I was told that I could do all the qualifying in the world, it wouldn’t matter because I would never pass the physical. Nor would I be able to get up to the tower because none of them have elevators. So I forgot about it for a while.

Since then, however, I have found out that I can learn to use computers, in spite of my disability. I am now planning to apply computers to radar technology, which, of course, is essential to air traffic controllers.

So, while I can’t pass the physical to be an actual controller, I can still be involved in an important way. It’s a compromise, but nevertheless, it is almost as though I am achieving my goal.

“Our greatest obstacles have always been professional ignorance and negative attitudes.”

Lou Wise, who lives in Toronto, provided the following comments about the experiences that he and his wife have had in caring for their daughter, Melanie.

Our daughter Melanie is a profoundly mentally retarded person, now almost 21 years old. As well as being retarded, Melanie is also “autistic”, which in simple words means that she is totally withdrawn into herself. She has never directly communicated with us. There is no eye contact, she has no speech. In addition to that she suffers from epileptic seizures, often as many as twenty a day. Because of this, she is on heavy medication, more than twenty-five pills a day.

At an earlier age, Melanie was very self-destructive. Between the ages of five and thirteen, Melanie was an almost constant “head banger”.

During one period observation, she banged her head against the floor almost 100,000 times in just over two weeks. We believe this came from a sense of frustration, because there was no other way for her to communicate. Naturally, this has done her damage, perhaps great damage. During that period, her forehead was constantly bruised and bleeding. During the worst of it, she had a severely puffed up forehead, and her eyes were totally blackened.

When Melanie was one, we realized she was slow. At the age of two, she was diagnosed as retarded. At that period in Melanie’s life my wife and I didn’t know what to do, who to turn to, or what kind of future Melanie would have. For the past twenty years, we have been learning more about her condition, but also about the incredible obstacles that parents face who have a child like Melanie. Since then, there has been a lot of progress made in caring for this handicap. In a few particular situations, we have had something to do with bringing it about.

I don’t hesitate to express my views, which are often angry ones. Over the years I’ve written quite a few letters to people at various levels about the problems we have encountered and I have been criticized strongly for doing this. But I don’t intend to change, because if I can’t get something done through normal channels, then I will find other ones. It shouldn’t be necessary to go through all that we have gone through, and many parents have done the same but the attitudes of some of the professional decision-makers in the field have left us with no other choice.

“She banged her head against the floor almost 100,000 times in just over two weeks.”

I would say that our greatest obstacles have always been the ignorance and negative attitudes of those people who are often in charge of programs for the mentally retarded — and these are the people who should know better. Not all of them, of course, because there have been some remarkable people who have helped us. But on the negative side, we so often ran into a stonewall whenever we would seek some help. So many professionals and others would say, “There is nothing you can do for a child as severely handicapped as she.” Too often we faced closed minds, and closed doors.

“If you know what to do, anybody can do it.”

The greatest exception to this attitude came in 1972 when we took Melanie to London and met Dr. Dieter Blindert at the Children’s Psychiatric Research Institute. We received a very early impression that he was very open with parents, and in effect invited us to be part of the solution. Before this we always had the feeling that M.R. counsellors and supervisors kept us at arm’s length. Not just us, but all parents. Yet our first day in London, Dr. Blindert asked us, “What can you tell me about Melanie, what does she do?” In the first twelve years of our efforts to help her, he was te first person to say to us, “Tell me about your child.” This has always struck me as incredible, and still does.

I think that another way that Dr. Blindert was extremely helpful is that he taught my wife and me how to take care of Melanie at times when professional assistance was not available. He always told us, “If you know what to do, anybody can do it.” Before this, most others seemed to ignore the fact that not only did we have a great stake in Melanie’s future, but that as her parents, we had come to know her quite well and could provide a lot of information that might somehow benefit her.

Working with Melanie over the twenty years has involved us in a constant effort to provide her with stimulation, to bring her out of herself. She does respond to music, to circular motion, to physical shapes, and to certain kinds of food. Years ago, we often played a record of a guitar concerto by Rodrigo, a Spanish composer. Melanie loved it, and would put her head next to the stereo speaker. The record was subsequently misplaced, and it was two or three years before I was able to find a replacement, this time on a tape cassette. When I played it after all this time, Melanie immediately responded as she had done before, and in a way that she does with no other music. So we feel very strongly that she recognizes and enjoys this particular piece. And she obviously remembered it after not having heard it for a very long time.

Melanie is now regressing, and responds to fewer stimulations than she did five years ago. Part of the reason may be the damage she did during her head-banging period. You can imagine what this must have done to her brain. It’s a very delicate organ, so you can see what a hundred thousand knocks against the floor would do to it. But part of the reason is also a result of the large amount of medication she must take each day.

Our greatest regret and our biggest source of satisfaction comes from the many difficulties that we have faced along the way. There have been so many obstacles which were simply a result of indifference and ignorance, not because of technical problems. There are breakthroughs being made with severely retarded children in other parts of the world. But we ran into people who did not want to hear about them. So much of the opposition we faced was totally unnecessary.

When I look at other young children who are now where Melanie was in the early 60's, I regret that we did not have the opportunities and facilities that are now available to these children and their parents. On the other hand, I know that many of our efforts, and the efforts of some others, especially the work that Dr. Blindert was able to do with her to bring about behaviour modification, have helped to bring about change that was badly needed and which must continue if children like Melanie are going to be given the chance to make the most of their potential, however limited that may be.

“The progress that is possible.”

My hope for the future of this whole field is that professionals will begin to keep themselves abreast of the progress that is possible. This will help to make it possible for parents to receive assistance right in their own communities. For this to happen, however, people in decision-making positions, especially those in charge of the institutions and associations, must overcome their ignorance, and their indifference. When that happens, we will then find the money that will help to provide the best possible quality of life for the most severely handicapped children and young people and we will begin to change public attitudes toward them.

“You don’t accept your condition, you live with it.”

“Like most able-bodied people, I didn’t know anything about the disease.”

When I discovered that I had Multiple Sclerosis, my first question was “Am I going to die?” Like most able-bodied people, I didn’t know anything about the disease, nor had I been all that concerned about my health. So it was pretty upsetting. I was divorced at the time and that was probably a major contributor to the onset of the disease. MS usually starts with an emotional upset.

At the same time, I had met another man and we were talking about getting married. When he found out about the MS, he asked me to marry him immediately. After I thought about it, I felt that I couldn’t do this to him because not even I knew what was going to happen to my health. So I broke it off. But he kept coming around to see me and finally I agreed. Unfortunately, three years later, we are divorced. He wasn’t the kind of person who could take it.

It was really tough after that. I had to support a child from my first marriage, and my health made it impossible to work. I was really upset, crying, hysterical, not knowing where I was going, and wanting to die. That’s when my salvation came in the person of a community worker named Cathy Guerney. She came and took me in hand. Before I knew it, I was involved with groups for the handicapped. Now, I do volunteer work at the hospital, with the elderly people in rehabilitation, and I keep busy with human rights issues. I wrote a brief for the Parliamentary Committee on Comprehensive Care which was well received. Right now I’m working with others on a proposal to help expand the Health Unit in Alberta.

“I’d give anything to be able to run one block.”

One heartbreak I feel is that I can no longer do athletic activities. When I was younger, I was a YWCA leader, and very much involved in swimming, volleyball, and baseball. I belonged to the trampoline, tumbling and sailing clubs. In fact when I was 14, I won a Junior Olympic pendant in sailing. Now if I let myself, I feel sorry that I can’t do any of these things. I’d give anything to be able to run one block. It really bothers me when I think of all the times that I could have run, and didn’t do it.

I’m having a hard time with my finances. Right now I get $410 pension from the Alberta Government Telephone, where I worked. $210 comes from Canada pension. My ex-husband helps me with $200 a month — and that’s all I have. Out of that money I have to keep my car running, support my son and myself, make house payments, make improvements on the house, and also buy drugs which aren’t covered by Blue Cross. What gets me is that I have to pay income taxes on my pension, about $70 a month. I think it’s a strange policy to tax people who are on pension. I wish they would stop doing this, because I could really use that extra $70.

“There are things to be done, and you can do it.”

My thinking has changed a great deal. When you get a chronic ailment like MS, or are going to die, first of all you get angry. Then you ask why is this happening to you, and then finally you start doing something about it. For some people, this change happens overnight. For others, it takes much longer, and for some, it never happens. You don’t accept your condition, you live with it. I think that’s very important, because acceptance to me means that you just lie down and let the situation take over. I refuse to let MS take over my life. There’s too much to be done. I find now that there is something inside tugging at me and saying “there are things to be done and you can do it.”

“Disabled persons are not extraterrestrial beings.”

I was born with cerebral palsy, but I don’t let it bother me. It is only society’s reaction to my condition that makes me think about it at all. The so-called normal people in society should always remember that people with a disability are first and foremost human beings. We have hands for giving, brains for thinking, and hearts for loving.

“People rarely say the insults they are thinking.”

Disabled persons are not extraterrestrial beings. When people

approach me, I wish they would remind themselves that everything that is true for them is also true for me. They want to be treated as intelligent human beings, and so do I. This is very important, especially when their first contact with me is over the telephone, where they can only hear my voice. The person may have prejudices because I have a speech problem. People rarely say the insults they are thinking, but I can sense what’s going through their minds. I find this very uncomfortable and embarrassing to deal with.

Since the Special Committee visited here, I’ve given thought to a key action that the government should take to help disabled persons. Each M.P. should be provided with a special fund of $10,000 which can be used in his riding to provide immediate assistance to disabled persons with emergency problems. The problems of the disabled are so often tossed like a ball from one government agency to another, with no one taking responsibility. A disabled person can die four times over before receiving services. With this special fund, the M.P. could establish a committee in conjunction with the associations that represent the disabled. The committee would give this money as quickly as possible to those persons who have urgent needs and no financial resources.

“The problems of the disabled are so often tossed like a ball from one government agency to another, with no one taking responsibility.”

“You can’t bank on what you don’t have.”

Generally, I don’t feel that disabled persons are consulted enough about the programs and policies which are directed at us — but things are improving. In the past five years, the needs of the disabled have become a fashionable topic of conversation. Things are getting off the ground and I hope this trend continues.

In my own mind, I don’t have many obstacles to overcome as a disabled person, but rather I have a lot of adjustments to make within myself. My goals are determined day by day. Today is important, and tomorrow will take care of itself. I don’t know what’s going to happen to me, and I don’t want to know. I don’t worry about future time because you can’t bank on what you don’t have.

“We all have this marvelous ability to adjust to new circumstances.”

Six years ago I had an accident when I dove into a lake, I broke my neck and injured the spinal chord. As a result I have some degree of paralysis in my legs and arms, and use a wheelchair.

After the accident I spent a little more than a year out of commission in hospitals before moving back into the community. At that time a new experiment in the delivery of services, coordinated by Clarendon Foundation, had just started up, here in Toronto. The idea was for necessary attendant services to be provided through Clarendon, so that people who require some assistance with their daily activities can continue to live independently.

I live in an ordinary apartment building but have a unit designed to be more accessible for the wheelchair. While I feel fortunate to be able to live this way, I also consider it a right. It should be a normal expectation for disabled persons to live in the community with the necessary supports. I cannot imagine being institutionalized. I don’t want to consider what it might have done to my desire to go back to university or what it would mean to my present working life.

At the time of my accident, I was a piano instructor at the Royal

Conservatory of Music, with thirty-five students. My first thoughts after my injury were that I was letting them down. I really felt badly that I couldn’t help them anymore. That’s not very rational, I realize, but that was my feeling at the time.

“Well, I can still think, I can hear and appreciate music, and I still have supportive family and friends.”

Aside from that, I didn’t feel negative about what had happened. I was very thankful that I could still do a lot of things that were important to me. My thoughts were, “Well, I can still think, I can hear and appreciate music, and I still have supportive family and friends”. I didn’t go through any period of denying my condition or feeling angry about it. I don’t know why that was, but I never did.

It wasn’t until I went to the rehabilitation hospital that I fully realized my loss. I saw myself in a mirror for the first time, sitting in a wheelchair. And the sight of other patients, struggling around in their wheelchairs brought home to me the full extent of my loss. Then I went through a period of depression, which I gradually overcame. Now, with each year, my condition seems more and more natural. The sense of loss recedes further into the past.

From the start I could not accept being treated any differently than before my accident simply because I was now disabled. I was still the same person. I am still the same person.

People say to me, “I could never adjust the way that you have done.” And I always tell them, “Of course you could”. That’s what being human is all about, this ability that we have to adjust to new circumstances, no matter how limiting. Regardless of how difficult things get, and I don’t minimize that, we all have a flexibility of thought and emotion which enables us to make the best of our situation. I’m not unusual in this. I see people making greater adjustments than mine all the time.

Although you learn to adjust to your disability, nevertheless, one has to overcome overprotective or patronizing attitudes. I never allowed myself to be onsidered as a patient, with all the loss of responsibility and lack of personal control over one’s daily life that that means. From the start I could not accept being treated any differently than before my accident simply because I was now disabled. I was still the same person. I am still the same person.

“I see people making greater adjustments than mine all of the time.”

“If only people would stop trying to do everything for us.”

I became a paraplegic when I was twenty-one. My attitude at that time was, “If I am going to live the rest of my life in this chair, then I am damn well going to live just as fast as when I could walk.”

“When you get a little bit aggressive, they look at you like you really don’t belong.”

I consider people’s attitudes toward disabled people as the most difficult obstacle that I face. It expresses itself as, “We’ll take care of you,” or “Don’t try so hard, we’ll always be here to take are of you.” In other words, our status as dependent people is always guaranteed. We won’t starve, but that’s about as far as the caring goes. But it disturbs them when you ask for anything more. When you get a little bit aggressive, and I’ve been accused of that, they look at you like you don’t really belong. I’ve had more than one person accuse me of being a “bully”.

A lot of people get involved with the disabled because of their own needs for self-satisfaction. There are organizations who really get off on this sort of thing. Helping the poor disadvantaged people lets them sit back and say, “Hey, aren’t we great.” This is a great obstacle because they are always doing things for you, but never with you. I have a very basic premise, and that is that we all have a basic human right to be wrong, to make mistakes. Which means that we also have a basic human right to make decisions for ourselves. When people prevent you from making decision, as is done with the disabled, they are depriving you of a key activity of being human.

There are also many people who get involved because they’re basically frightened of disabled people. I think they want to control our behaviour so that they don’t have to face some very basic issues of human rights in Canada. And, I’m not just talking about the human rights of disabled persons. There are a lot of other folks across this country who need their human rights protected, not just the disabled. We are just one of the minority groups that are now getting their act together. We’re all becoming a lot more vocal, and this scares a lot of people, especially people in government, who don’t want to deal with fundamental changes.

“We all have a basic human right to be wrong, to make mistakes.”

I think that one of the most positive things that this Special Committee has already achieved is to show disabled people that they have a lot of leadership, and that they can have a lot of power. People are coming out of the back closets and into the front pages as a political force to be reckoned with. Until recently there have been too few disabled people who were willing to get involved and stick up for their rights.

But what we are now seeing all across the country is that there is no apathy, or at least a lot less apathy than we’ve been complaining about. There are now a lot of people out there with concerns and with the willingness to do something about them.

Another big attitudinal problem that we face is the tendency of some people to idolize an outstanding individual who happens to be disabled, while ignoring the basic rights of thousands of disabled persons who live in their own community or province. For every disabled person who can do something that attracts newspaper headlines there are tens of thousands of equally courageous people who are leading lives of quiet desperation. Our efforts are not geared to producing an elite few who will attract public notice. What we are interested in are basic issues like accessibility to housing, buildings, transportation and employment opportunities, and the easy availability of technical aids.

I think we’ve only started. You have to win a round or two every so often just to stay in the fight. Lately, we’ve been winning more than we’ve been losing. The rounds are chalking up in our favour. Now, if we can just educate he rest of Canadians out of the attitude of, “We’ll do everything for you,” a very big obstacle will have been removed.

“There are a lot of other folks who need their human rights protected, not just the disabled.”

“We have to be able to fall down before we can get anywhere.”

I am mentally retarded and that means that it takes longer to learn. It takes me longer to understand things. I don’t know when I first became aware that I was different, but it must have been at school. I was in special classes all my life. This was at a regular school, so I felt different from the other kids.

Most of the other kids were nice, they played nice. In fact, I find that most people are understanding, but there are some that mike things difficult. They make fun of me and call me names, which makes me feel very uncomfortable. People who are handicapped like myself have found the same thing. Most people are nice, but there are a lot of so-called “normal” people who make life difficult. I don’t know why they do this. Maybe it’s because they don’t understand their own problems, and they just feel uncomfortable being around a handicapped person.

“Most people are nice, but there are a lot of so-called ‘normal’ people who make life difficult.”

Right now I am a leader in an organization in North Vancouver called People First. This is a group of mentally handicapped people who are helping other mentally handicapped people. The name means that we’re people first, even though we may be handicapped.

We have two meetings a month and talk about human rights issues, and we also plan a lot of recreational activities. I got involved in People First two-and-a-half years ago because I was very interested in having a place where other mentally handicapped people could speak for themselves. I know it’s certainly helped me to speak out. Before, I didn’t want to tell how difficult it was for me to concentrate. Now I come right out and tell them. And it was always quite difficult for me to talk on the phone, but now you can’t get me off of it.

Mentally handicapped people don’t feel comfortable talking to “normal” people, I think it’s because we are afraid someone will put us down. That’s something we learn very early. It’s difficult to get people to tread us like average human beings. You know there are a lot of folks called “normal” who act differently and no one says anything. But if a handicapped person acts differently, they say something. We get put down because of it.

“If a handicapped person acts differently, they say something. We get put down because of it.”

Then there are other people who want to keep us from making mistakes. Everyone else is allowed to make mistakes, but no us. Most people want to help us, and that’s great, but sometimes they try too hard. It’s like a baby learning how to crawl before it can walk. We have to be able to fall down before we can get anywhere.

“The only way to fight this prejudice is through complete integration.”

I started wearing artificial arms when I was about four years old. They weighed about ten pounds, which is a hell of a weight to hang around your neck, especially when you’re only four. So I never really adapted to them. I would wear them because they kept me warm in the winter, but as soon as I got home, back with my friends, I just threw them off. Besides that they restricted my mobility. It was much easier to adapt my own physical body than it was to work through these artificial tools.

There was a lot of blatant discrimination by other kids, but I think that children are really innocent. They become programmed by their parents’ attitudes. It’s crucial that disabled children get into a normal school setting as early as possible so that they can get used to bing with normal kids early in life. It’s also crucial because then normal kids can get used to physical disabilities, and start educating their parents.

Here’s an example of the adult ignorance and stupidity I’m talking about. In a big department store a little kid will come up to me and ask what happened to my arms. That’s a very innocent and wise question. But the parents rush up, grab the kid by the scruff of the neck, haul him away, saying: “Don’t ask questions like that.” Parents are prejudicing their children already with that kind of attitude.

Long-range, the only way to fight this kind of prejudice is through complete integration of disabled persons with people who don’t have disabilities. I am an advocate of human rights, and that is the key to the long-range education that is required. We have to start unlocking society, first in the public schools, and then proceeding through every other human activity. People are always complaining about the high cost of accessibility, the cost of making buildings, transportation, workplaces, recreational facilities accessible to the physically disabled people. They’re so worried that it costs too much. I think that’s just garbage, a smoke screen for not wanting to take action.

“If people do not want to hire disabled persons, fine. That’s their choice, but let’s fine them for it.”

The cost of keeping people in institutions is much higher than up-front costs of giving them access to society, especially to transportation and employment. One you pay for these up-front costs, in transportation, for example, that’s it. But with institutions, you never stop paying. Every year there are salaries, administration, operating costs and so one. I really advocate human rights in the workplace, because I think the right to a decent living wage is the key to integration. If people do not want to hire disabled persons, fine. That’s their choice, but let’s fine them for it. Let’s put some teeth into the legislation.

If you really want to integrate people, if you really want to equalize opportunities in society for disabled people, then nothing short of dollars and cents are going to make any sense to the Canadian businessmen who are going to make happen.

Canada is basically a materialistic society which is very hung up with money, and with visual beauty. Persons with a physical disability are automatically excluded from so-called “normal” activities simply because we are visibly different from other people. And because we are physically different, it is assumed that this fact changes us as human beings. For example, it is assumed that it changes our sex life, that we become asexual, hat we become sick persons. There is an unconscious attitude that says: “You have no right to have a family. We are going to lock you people up in institutions and leave you there. Every once in a while we will let you out in a whole group of people so that we can say, ‘Isn’t it nice that those people get out once in a while’.”

That’s real bullshit, and I think most people, when this attitude is pointed out to them, would agree with me. We need to change the attitudes of a culture that is at least 300 years old, and here I am talking about the Industrial Revolution. It’s based on a totally materialistic concept that the world, and especially human society is nothing but a big machine.

There’s a belief that once we figure out the mathematical formula we will be able to conquer everything. All we have to do is develop wonder drugs and everything is going to be just great. I am sure that there is some mad scientist somewhere in the world saying that we are going to get a wonder drug and my friend in the wheelchair is going to sprout legs again. This whole cultural attitude of conquering nature, conquering our bodies, conquering our environment is a poor and simple view of nature, society and mankind.

“We need to change the attitudes of a culture that is at least 300 years old.”