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Post-Polio Health (ISSN 1066-5331)

Vol. 4, No. 4, Fall 1988

What People with Disabilities Hope for from Other People

Robert Ronald, SJ, Taiwan, ROC

Please don't notice only our disabilities. They are the first thing that you see, but they are not the most important thing there is to know about us. We hope that when you see us you will say to yourself, "Here's somebody like me, who may have some abilities, interests or aspirations similar to mine. I wonder if there is anything I can do to help keep the disability from standing in the way of their realizations."

Please don't exaggerate our disabilities or suppose we're all alike. People have shouted at me as though I were also deaf and talked to me like a child as though I had never grown up. Or, because I'm in a wheelchair like their grandfather who just died, they think they know all about me. We hope that you will think when you see us, "Here is somebody who has something interesting to say if I will stop and listen. And something interesting to do if I'll give him or her the chance."

Please don't think of us only as people who cannot do things. We are just people who cannot do some things the regular way. I cannot walk from here to there, but with a good wheelchair I can still go from here to there. A blind person cannot see the words in a book, but with Braille can read the book. We hope that when you see us you will not say to yourself, "How sad that this person can't do the things I like to do or go the places I like to go or work where I do." We hope you will think instead, "Too bad about the limitations, but no matter. What kind of training or special equipment or ramps are needed, so that he or she can also do the things I like to do or go the places I like to go or work where I work?"

Please don't deny our disabilities or treat them lightly. They are something very real to us with serious, permanent effects on our lives. We hope that you too will acknowledge the difficulties we face and pitch in to help us remove the barriers and problems. If we are discouraged, encourage us not by distracting us to think of something else but by showing us practical ways of coping.

Please feel with us our grief and anger and frustration. Often the best way of handling such feelings is to get them out in the open where they can dissipate. Don't take as personal insult or rejection what we might say or do in your presence on such occasions. Instead of just telling us to shut up or to cool it, show us you understand and empathize with our point of view. But if we persist in bemoaning our losses, make your encouragement practical. Point out to us all the things we can do. Help us find a goal for our lives that appeals to us and which we can attain even with our disabilities. Then as our friend show us how to reach that goal.

Please don't think that we are all inferior and depressed and would rather stay with our own kind. Sometimes this is true, but if we manifest fear or hesitation or distrust or believe that we cannot do a lot of things, it is usually the result of bitter experience. Some people stare at us, avoid us, laugh at us, pity us, overprotect us. Everywhere we meet barriers. We have learned inferiority from being relegated to inferior status. What we hope for from you, therefore, is positive regard and feedback. We will more readily learn to value ourselves the more we experience you valuing us, accepting us as friends and associates, and providing us opportunities for participation, self-expression, growing and giving.

Please don't pity us. Disclosing horror or sadness at our situation only makes us feel worse. We need solutions not commiseration. Show us you believe these obstacles can be overcome. Show confidence that we can still lead wonderful, full lives. Don't deny the hard work or the difficulties that lie ahead of us, just help us move forward.

Please don't be afraid to notice our disabilities or ask questions, but do it right. Curiosity is not always bad, since asking each other questions is one of the best ways that friends have of getting to know each other. So look at us, ask all the questions you want, but just don't treat us like animals in a zoo without feelings. It is degrading when people pay all their attention to our wheelchairs, caring nothing about ' When you look and speak, do so in a way that shows respect for us as persons and interest in us as potential friends. And don't forget to give us a chance to know something about you, too.

Please don't make decisions for us or tell us what we should do. What we are and wish to do should not be defined by our disabilities but by the nature of our particular abilities, interests, aptitudes and ambitions. we may need your suggestions and advice for which we will be grateful. We may even need to be cautioned if we want to bite off more than we can chew, but remember, it is the size of my mouth and not yours that determines how much I can chew.

Please offer us help if you see that we need it. Please ask first whether the assistance is wanted; then ask how the help should be given. Do it as inconspicuously as possible. You may want the whole world to see that you are doing your good deed for the day, but we would rather no one noticed that we could not do things for ourselves.

Please be patient with us and fair. We people with disabilities are not perfect, nor always on our best behavior. In this, unfortunately, we are all too normal. Like everyone else, we are sometimes in the dumps and sometimes on cloud nine; sometimes lazy, demanding help we really don't need; sometimes stubborn, refusing even the assistance we do need; sometimes friendly, sometimes hostile; sometimes placid, sometimes angry. We do not ask you to ignore our faults. We should be accountable for our actions like everyone else. But at least show us as much tolerance for our short-comings as you show your other friends and colleagues for theirs.

Please don't tell us how wonderful we are because we smile so bravely or try so hard. In the first place, we already know it, having been told so a million times before. In the second place, this is actually rather discouraging. Here we are just trying to do the ordinary things every one else does all the time and someone gushes over us as if it were something extraordinary. This tells us the person really thinks our disabilities are awful and our capabilities low. Yes, we do have to try harder. Yes, we do deserve credit for the extra efforts we have to make, but we would much rather have you pitch in and help us reach the rest of our goals than just applaud what we have already achieved.

Please don't tell us we are already doing enough or to stop trying so hard. It makes some people uncomfortable to see us struggling with our wheelchairs or assistive devices or they want us to accept our disabled lot quietly, graciously submitting to the status of being served instead of trying to serve. Perhaps some of us have reached the limits of our capabilities or are content to maintain our present positions, but the decision when to stop should be ours, not yours. Many of us still have abilities and inner resources we want to develop and use, even if it is going to be difficult. Disability does not take away our right to pursue the full development of our potentials. Instead of preparing us a comfortable place to rest at the bottom of the stairs, we would rather you help us find a way to get up the stairs to where the action is.