This is an exerpt from Teens with Physical Disabilities: Real Life Stories of Meeting the Challenges, by Glenn Alan Cheney (Enslow Publishers, Springfield, NJ, 1995. 112 pp. ISBN 0-89490-625-9) $15.00
Copyright: 1998 Glenn Alan Cheney
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by
Glenn Alan Cheney
Foreword
This is not a book about disabilities. It is about how a handful of young people are coping with certain physical disabilities.
Before we say another word, let's make sure understand that key word, disability, and its counterpart, handicap. A person has a disability and faces handicaps. The disability comes with the person. In the case of physical disabilities, it's the legs or hands that don't work, the eyes that can't see, the ears that don't hear. The handicap is the inability to walk up stairs, pick things up, see a face, hear a voice, and so on. It is the difficulty the person has in dealing with some aspect of his or her environment. Even though there isn't much to be done about many disabilities, handicaps can be overcome. The wheelchair helps overcome the handicap of an inability to walk. But then the handicap comes to life again when the chair reaches the bottom of a stairway. The handicap can be as simple as a street curb or as complex as an attitude.
As long as we're dealing with terms, let's make it clear that a person with a disability is not a disabled person. If you can understand the difference between those terms, you can understand the extra problem these people face. It isn't just their disabilities. It's the way the way others perceive them. It's a handicap called prejudice.
This book presents the thoughts and experiences of a few teenagers with physical disabilities. It does not approach the vast area of mental disabilities, which includes everything from Down syndrome to drug addiction to emotional instability. Not does it touch on the complete range of physical disabilities, which includes asthma, diabetes, bone disorders, nervous disorders, obesity, emphysema, heart disease, amputation, cancer, contagious diseases, traumatic brain injury, and many genetic abnormalities.
Sadly, the list of mental and physical disabilities is far longer than any book can cover. But, again, this is not a book about disabilities. It's about seven people. One was born deaf, another was born with rheumatoid arthritis. One gradually developed the worsening symptoms of muscular dystrophy. One became blind at the age when other kids are just getting good at baseball. Three others became paralyzed in their mid-teens, the years when a kid normally starts gaining the independence of adulthood.
Like every other teenager in the world, these kids have had to grapple with all the radical changes brought on by adolescence. They've had to develop their individual personalities while at the same time fit in with their peers. They've had to decide what was right and wrong and what to do about the temptations they've found at the threshold of adulthood. They've had to deal with bodies that were becoming quite different from the ones they had as young children.
On top of all that, they've had to deal with a disability that limited their activities and set them apart from the crowd. Maybe they've missed classes because an elevator wasn't working. Or they missed a party because they can't drive there or, worse, weren't invited. Or maybe their clothes don't fit right because their bodies are different. Or people are uncomfortable talking with them because they confuse a physical problem with a .personality; problem. It's a lot for a kid to put up with.
Though the people in this book have very different disabilities, they share a single desire: to be seen as normal. Like virtually every other person with a disability, they wish they could be appreciated for who they are and what they can do. Their physical imperfections are insignificant compared to their abilities and the person inside the body.
Coping with a disability is a lot like growing up. It's a process of moving from blissful certainties, like those of childhood, into an adult's recognition of how life can be painful and hard. Like the process of maturing, it's a movement from ignorance to awareness. The individuals have to learn to control their world in new ways. They learn to plan, figuring ahead how they'll get up stairs or find the right door or communicate with someone. They face the mountainous obstacle of emotional depression. They figure out what they have to do and how they have to approach life. In short, they cope.
In the coping, they find new values. The fancy car, the stylish clothes, the games and toys of childhood hold much less value for the person who has no eyes or legs or hands. The real value of things becomes more clear. The disability brings things into focus. The person sees and appreciates what other people can't.
In other words, compensating for the disability is only half the battle. Learning to use sign languge, read Braille or lift oneself out of a wheelchair and into a car doesn't erase the effects of a disability. The person as a whole must change. Ironically, the negative change in body brings about a positive change in person. The physical disability generates a spiritual capability.
But it's not an easy growth. The individual has to work it out alone. Society doesn't offer much help. In uncountable thousands of ways, society helps everyone learn how to mature and how to face the world. Open any book, watch any film, listen in on any conversation, and you'll get a glimpse of how someone without a disability is handling life. But how often does a person with a disability get to share the feelings and experience of someone in the same predicament? For that matter, how often does the perfectly healthy individual get to share that experience? Opportunities are few. This book is meant to be one.
Contents
Foreword i
Donny Dumeng 1
Questions about Gunshot Wounds 7
Lisa Morgan 9
Questions About Juvenile Rheumatoid Arthritis 14
Jimmy d'Avanzo 16
Questions about Muscular Dystrophy 22
Lori Siedman 24
Questions about Deafness and Usher Syndrome 29
Nate Barnes 32
Questions about Blindness 37
Andi Nordstrom 39
Questions about Paralysis 47
Will Thomas 49
Questions about Wheelchairs 54
The Americans with Disabilities Act 57
Resources 60
Bibliography 64
Index 66
Donny Dumeng
Donny Dumeng lives in a rough neighborhood in a Connecticut city with the highest per capita murder rate in the state. His parents are from Puerto Rico but don't live together. He lives with his mother, who cleans offices at a tea company, and his little sister and her new baby. He's a big fan of pepperoni pizza and rap music. It's all he wants to hear. He's not sure what kind of career he'd like to pursue, but he's thinking about computers. Not a bad field, if he can finish high school. He dropped out of the ninth grade when somebody shot a bullet into his spine.
"I was going to the store, right? And I saw this friend of mine, and I started talking to him. Then these two black dudes walked by and started shooting at two other Puerto Ricans. It was over some drug thing, but since I was there, I was one of the ones that got shot. I fell down. I thought I was dreaming, but I wasn't. I was trying to get back up by I couldn't feel my legs. I thought I got shot there. I kept saying to my friend, "What happen my legs? What happen my legs?"
"My brother drove me to the hospital. I was awake the whole time and kept telling him to tell my mother I just got shot in the legs, that's all, so she wouldn't faint or anything. Then they X-rayed me and found out I had a bullet in my spine. A .380. It was in a spot where they couldn't take it out, and it's still in there. I was in critical condition and had to stay in that hospital for two months, lying flat on my back the whole time. I couldn't move anything from my chest on down. I started getting bed sores so they took me to Newington Children's Hospital. I had to stay two more months. The whole time I just kept saying "I want to go home, I want to go home." I gave the nurses a hard time, cussing them, throwing stuff and not doing my care exercises. I was just worrying about my mother. I didn't let them teach me anything about my condition or how to deal with it so they finally just sent me home.
"I couldn't handle it. I missed all the fun I used to have, like riding dirt bike. I just wanted to die. I didn't care about anything. I started doing all kinds of drugs and then dope. A lot of dope. I mean heroin. That's stuff's bad. Once you start, you can't just kick it. So for a year I just be hanging out and doing dope, doing dope, doing dope. I don't know how my mother never found out. She kept asking me what I did with all my money. I got skinnier and skinnier and was staying out late all the time, not going to school and not taking any care of myself Finally my mother told me she knew what I was doing. I can't lie to my mother, so I told her yes, it was true. She tried to get me into programs, but I kept running away.
"For a while I got around in a wheelchair, but then I bought me a car. A guy from Puerto Rico who got shot and can't walk took me down to a big parking lot near the beach and showed me how to drive without your legs. You use a stick to push on the brake and the gas. It wasn't legal. I just did it.
"After that, I be sitting in the car all the time. I had crackheads running around delivering dope for me. That's how I got money for my own habit. Nobody messed with me because I already had a reputation for being bad. Before my accident I already shot a few people. I shot my aunt for smacking me. I shot my cousin because of a girl. I shot a black dude who was slapping my sister. I shot another black dude who I was trying to rob. He turned around and started running and I shot him in the back. I think that's why I got shot in the back. All that was before my accident. I was real hyper. I sniffed coke and smoked weed, and then any little thing would set me off and I be yelling at everybody, beating on my sisters for no reason, all kinds of stuff. I was hyper, man. I was crazy and bad. I wouldn't let my sisters see nobody. That was back when I could walk, but after the accident, while I was in the hospital, I couldn't protect them, so my two little sisters both got pregnant.
"About a year after the accident, I got sick again. Real bad pressure sores from sitting in the car all the time. I was close to dying. I went to a hospital near home, but my friends started bringing me weed. They used to push me outside so we could get high. I was in that hospital for a month, and I was still bad, cussing at the nurses and everything. They finally made me go home. Visiting nurses would come see me, but some of them would refuse to do anything with me because the sores were so bad, all infected and everything. The nurses said they were going to turn us in to the state department of child welfare if I didn't go to a hospital. My mother kept begging me to go to Newington Children's Hospital again, but I didn't want to go because it was too far from home. But then my sister had a baby and we were afraid he'd catch my infections, so I agreed to go if she promised to visit me every week.
"I sniffed a lot of dope the day I went. I was real high. But I went clean as soon as I got there. This time the hospital really saved me. I was there for a whole year 'cause I had to have operations and then recuperate. A lot of my friends were coming to visit me. Some of them had been shot and were in wheelchairs. They told me, 'You got to handle it, man. You got to deal with it. Don't let it stay in your mind. Learn to keep on doing what you used to do back when you could walk.'
"One thing I did right this time was to learn what they were trying to teach me at the hospital. Before I left I knew how to take care of myself in the world. I learned how to transfer by myself, which means to move from the wheelchair to a car or a chair without help. I learned how to get dressed by myself. Before I learned that I had to have my sisters or a home aide help me. I learned all kinds of stuff. That was a good hospital, I got to say that. They saved me.
"One of the nurses, she kind of liked me. Now she's my lady and she comes down to visit me. She's real fine. There's still a lot of stuff I can do. But I'm not getting married or anything right now. I'm too young for that.
"I'm not hyper the way I used to be. I keep calm. I stay at home. I don't go messing around the streets and saying out late. It's bad out there, worse than it used to be. I know a lot of guys who got shot. Some of them died. Some of them ended up in wheelchairs. Some of them went to jail. I know this one crackhead who's out on the street in a wheelchair begging money, always asking for a dollar or whatever. If I got a dollar I give it to him and tell him to go home, get off the street. He didn't get shot. I don't know what it was that made him not be able to walk. I think it was shooting dope. Something like that. He got sick or something.
"People give me money, too. Drug dealers. I don't ask for it. They just give it to me. They feel sorry for me 'cause they knew I used to could walk. And 'cause they respect me. They knew how bad I used to be. So sometimes they give me money, and nobody messes with me, except sometimes somebody takes advantage of me. Like I'll give somebody some money to go get me a pack of cigarettes and they won't come back. I hate that.
"Sometimes my family puts on a attitude. I ask for some help or something and they say, 'Go on and do it your ownself.' Like as if I could have got up and done it. Sometimes they say I like being this way 'cause I don't have to do nothin' and I get a check for $434 every month. They be crazy. I don't want a check. I want my legs back. Who wants to wait for a check in a wheelchair?
"One thing I do now that I didn't used to is play basketball. I never used to do any kind of sports, but now I do it just to get out and do something. I'm on a team called the Park City Rollers. We play teams from all over the place - Rhode Island. Boston. We're pretty good. It's more fun than staying home watching TV and making myself miserable like the way I was before. I used to be real miserable.
"I'm trying to get my own apartment in a special project for people with handicaps. I know a lot of people over there. It's all set up inside for a wheelchair. I can do everything to take care of myself except cook, but I'll just send out for pizza every day. That's good enough for me.
"As soon as I get my apartment I'm going to start doing something with my life. I want to go back to school and then I'll think about what kind of a career I want. I was thinking about computers, but I don't know. Maybe I'll get a job in the post office, in back, where they sort out the mail.
"If I hear about another kid who gets shot and has to be in a wheelchair, I'm going to tell he's got to deal with it. You can't let it stay in your mind all the time. You can't go feeling sorry for yourself 'cause nobody's going to feel sorry for you and help you do everything. The only one that's going to do that is your mother. You have to get out and start doing the things you always did. You have to learn how to do it. You can always do a lot of stuff if you learn how.
"If I hear about a kid messing around like I used to, I tell 'em they better stay off the street and stay off drugs. When they ask me why, I tell them it's because everything comes back at you. You act crazy and something crazy's going to happen to you. You bother people, you're going to be bothered. You run around with a gun, you're going to get shot. If anybody wants to know how you know, you tell them Donny told you."
How does getting shot cause paralysis?
A bullet of any caliber can cause permanent or temporary damage to the spine, neck or brain. The brain controls arms, legs and other parts of the body by transmitting and receiving neurons which travel through the spinal cord. If the pathway of those neurons is broken, part of the body cannot respond to "messages" from the brain. Often the brain cannot receive sensations from a part of the body. Depending on where the spinal or cerebral damage occurs, the paralysis can be partial or virtually total.
Is there any cure for paralysis due to a gunshot wound?
It depends on the wound. Damage to brain cells is permanent, but sometimes the brain can find a way to work around the injured area and regain control of some body movement. Damage to the spinal cord is permanent, with very little recovery of related movement.
How can I keep from getting shot?
In violent neighborhoods, their is no perfect protection from gunfire. Though you're safer indoors than out (unless there's a gun in the house) bullets from high-powered guns can go through walls of brick or wood and can travel over a mile. The best protection is avoid situations that might attract gunfire. Drug dealing is the most common source of by-standers being shot. Accidents with guns in the home are the most common cause of gunshot wounds. Robberies are a less common cause, but shootings do occur.
The best protective measures, then, are obvious:
1. Avoid people and areas involved in dealing drugs.
2. Either don't keep a gun at home or keep the gun locked up, well hidden, out of the reach of children and separated from ammunition.
3. In the case of robbery, stay calm, do not resist, and hand over valuables.
4. Report illegal handguns to the police.
Will a bullet-proof vest keep me safe?
Bullet-proof vests do not stop all bullets and do not protect the vital
parts of the body. A bullet that does not penetrate the vest but hits the
spine can do enough damage to cause paralysis or death.
Jimmy D'Avanzo
Jimmy's an artist. He has a gift, an eye, a certain talent for creating paintings of striking beauty and surprising juxtapositions of colors and things. But his paintings aren't of paint, and he doesn't exactly use a brush. He uses a mouse - the kind that plugs into a computer. With tight, precise movements of his hand, he creates images of things he's seen only in his imagination. In a personal world restricted to the places he can go in a wheelchair, he paints places he creates in his mind.
I was in nursery school when we realized something was wrong. I couldn't climb stairs anymore. It felt like I had cement shoes. I just couldn't lift my foot up. My parents had me checked for everything. I went through all kinds of tests, and finally it came down to muscular dystrophy. My muscles were deteriorating and didn't work right. Nobody knows the cause of it, and nobody knows a cure. You just keep going downhill, getting weaker and weaker. One day you can't life up your foot. A couple years later you can't move your leg. A few years later you can't pick up your fork. Right now my lungs can barely cough up fluids.
Even after the diagnosis I kept going to a regular public school. My mother made sure of that. I wasn't going to be different. But I had to use a walker, and then I had to use leg braces, too. After a while I had to use a wheel chair, and by the sixth grade I couldn't push the wheels anymore, so I got a power wheelchair. That's what I've been using ever since. I can still push the buttons that control it.
I had friends when I was a kid. My childhood was as normal as it could be under the conditions. I did the same dumb stuff all kids do. Like once we poured antifreeze into a little creek and lit it on fire. Everybody ran off giggling like mad, and I made my getaway in a wheelchair, racing down the street as fast as I could go.
I stayed in school, but of course kids saw me as different. How could they help it? I wore leg braces. I studied at a desk that was high enough for me to stand up at it. When I sat down, the teacher had to lift me up onto my feet while everybody else was standing in line waiting to go to lunch. Of course they looked at me like I was different. That's what fifth graders do.
One kid was the worst. I don't remember what he called me. Weirdo or something. When my older sister heard about it, she called him up and yelled at him. Then he started rumors about my mother. Never mind exactly what. It was enough to get my sister real mad. I remember seeing her limping down the school corridor looking for him. She'd had knee surgery the day before and the scar had come open. She was limping down the corridor real fast, bleeding at the knee and saying, "I'm gonna kill that kid." But she didn't, and I guess he grew up enough to be sorry. By the tenth grade, he was always offering to help me with things.
Most people don't say anything obnoxious. They just kind of look at me different and don't know what to say. My sister says I should let some drool slide down my chin, but I just smile and try to be pleasant.
What really gets me mad was when a teacher is insensitive or my class schedule gets screwed up. They aren't supposed to give me any classes upstairs, and wouldn't you know, every year they manage to do it. They never think to pull my schedule out of the computer and give it a little personal attention. My mother has to fight them every inch of the way to make the high school building accessible. We aren't asking for anything special, just what the law requires. They finally got the whole school pretty accessible except for one place, the library balcony, and wouldn't you know, they scheduled a class for me right there.
My mother was at a meeting where all the teachers and the parents of kids with disabilities got together to discuss what the various kids can do, can't do and really ought to do. After they mentioned all the special treatment I needed, one teacher actually asked why they bothered to go to all that trouble to teach me if I wasn't going to live a normal lifespan. Of course everybody else came down on him pretty hard, and I bet he was real sorry he said it, but you've got to wonder how anybody could be so insensitive.
In junior high school I couldn't get down to the cafeteria, so they brought lunch to me in a classroom. A bunch of kids would come eat with me. We had a regular fraternity. It was great. We didn't feel cut off. We felt special.
But MD sure stunts your social life. You get to be very reclusive. It's just too much to overcome. I mean, besides all the normal teenage problems of personality and trying to fit in, there's the physical problem. You end up not having many friends at all. You stay home all the time and can't go out unless somebody in the family takes you.
And that creates its own problems. I mean, I'm always here. Every time somebody in the family turns around, here I am. I can't get away from them, and they can't get away from me. It can drive you crazy. In the back of my mind I'm always kind of bitter about my condition, and there's nobody to blame but the people around me, which of course I don't mean to, but there they are. I kind of get out of control, yelling stuff that doesn't even make sense. Thank God my parents were able to deal with me when I got into those moods. Not that I believe in God. I mean, I go to church every Sunday because it makes my mother happy, but I can't believe a God would make so many problems for people. Not just for me. I mean all over the world.
I think one of the most frustrating things for me is that I can't return any of the help my family gives me. There's no way I can show gratitude. I can't say, "Hey, Dad, I'll go mow the lawn for you." I don't know if I'd say that anyway, but it would be nice if I could. My mom says I treat her like a slave, but what can I do? She's just kidding, but it's true: whatever I need, just a glass of water or something, I have to ask for it. I can't even lift my arms.
I can't wash my own face, and I can't get up in the morning and take a shower without help. When I take a shower, which I get to do only every other day, all I can do is sit there in a chair. I can't adjust the temperature, can't do anything. It's nice to just sit there and let the water pour down, but sometimes I wish I could just get up in the morning and take a cold shower. It would help me wake up.
I've been to support groups where people with all kinds of disabilities sit around and gripe about how hard life is. I never got into it at all until one day somebody was talking about alienation, how you get cut off from the world because you've got physical problems. He talked about other kids teasing him. That touched me. When I heard that I related to it and knew I wasn't the only one. I also knew that, yeah, I can deal with it.
This summer my parents hired a college kid to take me around. He was real nice. He got to be a regular part of the family. We'd go down to the mall or whatever. He helped me get to a summer job I had, doing artwork on a computer. But then he got a real job, so off he goes, and I have to find somebody else. I start college next week, and I need somebody to take me to class, set up my computer, and then to take notes for me. I just hope I can remember to speak up for myself. It's too easy to just let whoever's standing there take charge and make decisions and tell people what I'm supposed to be telling them.
A big moment in my life was in the tenth grade when I got to study computer art. It opened a new door. It was something I could do. I'd never thought I was good at art before because I couldn't really hold a pencil or a brush. But with the computer, just by rolling the mouse around, I could chose a kind of brush, a particular shade of color, and I could draw something just as well as anyone could do with a real brush. I did it better than other kids and I did it well enough to see myself really producing art. I entered a national computer art contest at high school level and took one of the higher awards. It wasn't a contest for people with handicaps or anything. They couldn't see the predicament I'm in. They just saw my art.
I don't know what it is about art or why it means so much to me. I have a kind of gift. I don't know where it comes from. It's a kind of vision. It's connected to physical disability, but I don't know how. It's something about how your attitude changes.
When my mother saw an article in the paper about a local artist whose computer art was being shown in New Haven, she called her up and asked her to come see me. Now she's kind of taken me under her wing. She showed me how you can do real art on a computer. We worked together two articles about computer graphics software. She analyzed the Mac version and I did the DOS version. Two of my works have been in computer magazines. She comes over to the house every month or so and gives me ideas and suggestions.
I heard about this artist who was already pretty famous when he was in an accident or something and was paralyzed. Now he can't move his arms or legs. Now he has to paint using a brush in his mouth. And his paintings are still good. You couldn't tell the difference between before the accident and after. One thing he said really impressed me. He said, "I'd paint if I had to spit it onto the canvas." That's the kind of artist I am. I have to do it. It's part of me.
Next week I start college. I'm going to major in art. I've already met the guy in charge of the art department. He's cool. There's something about people in art. They're a little looser. They can see past the physical part of things. They're more willing to accept differences.
That's what I want to do in life. My biggest dream is to become an artist known all over the world. I want people to look at my art and think, "Wow, he's incredible."
Questions about Muscular Dystrophy
What is muscular dystrophy?
There is no single disease called muscular dystrophy. The term refers to a group of hereditary disorders that destroy muscle tissues. Some of these diseases attack motor nerve cells int he spinal cord. Others cause failure in the transmission of signals from nerves to muscles. Others cause chemical deficiencies. The ultimate result is a muscle weakness that gets worse and worse. In most cases symptoms begin during childhood or adolescence. Lifespan is usually shortened substantially.
Is muscular dystrophy contagious?
No. It's genetic. There is no cause besides a certain gene, and there is no known cure.
Are people with muscular dystrophy mentally handicapped?
No. Only their muscles, often including facial muscles and eyes, are affected. Their brains and personalities remain normal.
How can I recognize muscular dystrophy in someone?
Very often they'll be in a wheelchair, using leg braces or a walker. The limbs move awkwardly or very little. They may have trouble holding their head up or even speaking or smiling.
What should I say if I meet someone with muscular dystrophy?
Say the same thing you'd say to anyone else. Offer whatever help seems appropriate to the situation (opening a door, picking up something from the ground, etc.). They might be offended if you cater to them too much, but a polite offer and an acceptance of "No thanks" is quite appropriate.
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