Future Reflections Fall 1991
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ON PARENTING THE VISUALLY IMPAIRED CHILD
by Norman Balot
Editor's note: The following article is reprinted from the VIPS Parents Newsletter, a publication of Visually Impaired Preschool Services of Louisville, Kentucky.
Parenting is a difficult job. It's a tough job. It is not a job that any of us, under any circumstances, can take lightly. And when the parenting process involves an infant or a child with a disability, there are certainly going to be a few more twists and turns in that developmental road which we are going to have to examine and deal with....
Here at VIPS...there are lots of things we can do to help parents of visually handicapped children, and certainly some things we simply cannot do. We can teach the "how to's." We can teach you how to do certain things at certain times and what might be the best thing to do at one particular time. And we can talk with you about the why's of this or that situation or occurrence. But life is situational. Life is made up of tens of thousands of different occurrences. And how to deal with [each situation] simply cannot be taught. Basic to everything is one's approach, one's judgment, one's attitude in dealing with these tens of thousands of situations.
And frankly, one's attitude is the key. Perhaps a simile will be of some value here. Consider for a moment a carpenter who is so skilled he knows how to operate every tool there is available. This carpenter has every tool which has ever been invented. So he's got the great skill and he's got all the tools. But those tools lie in a tool box, and if the carpenter cannot open the tool box, then he's useless; he can't do anything unless he's got the key to that tool box. In the same way your attitude is a key. It is a key that will determine the usefulness of the techniques that you have learned as a parent. And so, while VIPS is certainly going to help you with the how to's and the why's of dealing with and raising your child, perhaps the more significant benefit of the program is the development of a good, positive attitude toward your child.
Let's stop for a moment and let me ask you a question. Suppose I were to say to you: "I have a very serious affliction. I have been burdened with a serious problem for most of my life." And I would ask you what [you think] that problem is. Well, before any of you answer,...I smoke cigarettes. That is my problem. I've smoked cigarettes for many, many years. To me this is a burden; it's an affliction; it's something I wish I didn't have. It is quite possible that many of you might say to yourselves, "I don't understand this blind guy standing up there telling us that smoking is his most serious problem."
Well, ...I'm saying this to you to make a point. Certainly blindness has been something of a problem for me for much of my life. It has been, it is at times now, and it very likely will be a problem for me in the future. But much of the time it represents no problem to me at all. My life has been a successful life, a fun life, a productive life. And frankly, it has been a life which I don't know that I would trade. Now mind you, I'm not saying that I would not trade it. I'm just saying that I do not know that I would trade it.
If some all-powerful deity were to come to me and say: "Norman, at age three you will not get spinal meningitis and, as a result, you will not lose your eyesight. However, your life as a sighted person will have no guarantees, no assurances. We won't guarantee success, or fun, or productivity. You take your chances." Well, I don't know that I would want to trade the life I've had for that. Because as I said, it has been one hell of a lot of fun. It has been useful. It has been, in my mind, very worthwhile. And so I leave you with my inability to choose and you may draw your own conclusions. I wish for all of you that your visually handicapped children have a similar problem in choosing whether or not they would select another life....
....I've been a lucky guy. I have certainly been blessed with certain talents, which have helped me along. And of course the fact of my blindness (one cannot deny this) has acted as a tremendous motivating factor for me. I don't know where I would have been or what I would have done had I not been visually handicapped. It has represented a strong incentive, moving me along through the educational system and of course through my work.
But I cannot deny the great start that was given to me by my parents, and particularly my Dad. He was an unsophisticated fellow, my Dad was. He was not confounded by the fact that he had a blind son. He saw to it that he took his blind son with him wherever he could to show him off. He seemingly had no guilt in regard to having a blind son. In fact, he showed a tremendous amount of pride in his blind son.
I found it interesting (as a contrast to all of this) to learn of a recent study done on AIDS patients. I think some of you may know that the greatest fears in our society happen to be cancer, blindness and AIDS-in that order. Well, I learned in chatting with some people recently that there was made available to some AIDS patients a drug which would significantly prolong their lives. But, as a side-effect of the drug, the possibility of blindness was increased significantly. Just about all the patients chose not to take the drug. And that astonished me. It should astonish you. It simply amazes me that one would choose not to take a drug which would prolong life despite the possibility of loss of sight.
Hopefully, all of you in this room will not fall victim to the fear of blindness. It is the beginning of that good, positive attitude that you're going to develop. Because, frankly, if you do not develop that attitude, if you fear blindness (and you don't operate in a vacuum), you're going to pass that fear on, and that fear to some extent will become part of the life and the thinking system of your child.
Let's talk about some of the things we get involved with that tend to reinforce this fear of blindness. Let's start off with the blindfold game. All too often people want you to learn what it's like to be blind by putting on a blindfold. They say that by putting on that blindfold you'll understand how it feels to eat and walk and [experience] a variety of activities that one does daily as a blind person.
Well, what are you going to feel when you put on that blindfold? You're going to be frightened. You're not going to be able to see. It's going to scare the hell out of you. And you're very likely going to walk into things. You're going to put your arms out and wave them about. You're going to sit down at a table and try to cut food and throw stuff all over the table. You may even have some difficulty finding your mouth with your spoon or fork. I'm here to tell you that this is a silly game. That's not the way I feel, and your putting on a blindfold is not going to make you feel anything like me. When you put on a blindfold you're going to be dependent. You're going to feel frightened. You're going to feel incompetent. And that is not the way I feel, and it is certainly not the way you're going to want your child to feel. Putting on a blindfold teaches you a lot of negative things, and those negative things are very likely to be passed on to your children. You cannot walk in my shoes and you shouldn't try. That's not the way to learn how blind people will function and how to best help your children to function properly.
What is your job? Well, in a nutshell, you're going to promote exploration in your child. You are going to develop self-confidence in that child. You're going to do what you can to build a good, strong ego. You're going to promote success. And, you're going to promote pride. Exploration, self-confidence, strong ego, success, and good, old-fashioned pride; these are the things you're going to promote in your child. And frankly, you're not going to do it by putting on a blindfold.
So how are you going to do this? How are you going to deal with all the variables? All we can do is give you some of the guidelines that may be helpful to you, but it all really rests on your judgment. So let me take just a moment to examine a few of the situations that have occurred in my life, and hopefully they can be extended to a few of the situations that you may be dealing with.
How about unwarranted praise? The first time I walked into a duplicate bridge tournament here in Louisville, the bridge director announced that there was a blind person playing that afternoon and the only real difference connected with everyone else's play would be that they would have to call their cards as they played them. Well, they all thought this was really wonderful. Somebody even said, "Oh, isn't that wonderful," at which point I received a very fine round of applause. I felt compelled to stand up and say that while this was very nice, the applause would be a whole lot more valid if they gave it to me after the tournament. And that did get a chuckle, and I think people then realized they had done something rather strange. They had given me unwarranted praise. It's unnecessary. It's bad practice. It's the kind of thing that you do not want to do with your youngsters: praise them for something they have accomplished. You've got to accomplish something, you've got to do something, before you deserve praise.
The desire to overprotect your child is going to be an important consideration in your youngster's development. I can certainly think of some incidents in my wrestling career (and I was a fairly competent wrestler in college) that may have some pertinence to the point I'm trying to make. At the beginning of every wrestling bout the combatants come to the middle of the mat, shake hands, and move to their respective corners. On too many occasions the referee would try very hard to get me to agree to start in a position which involved contact with my opponent. It was something he felt was helping me, something he felt was right. It was something I refused to do on every occasion and, thank heavens, I always got my wishes in this regard. I felt that by starting in a different fashion from all other sighted wrestlers, I would be given an unfair advantage. And that is not the way I expected to win. If I was going to win, I was going to win because of my ability. It's the kind of thing you're going to have to think about in dealing with your child.
The real problem is trying to achieve the right balance between overprotection and rejection. I think every child, blind or sighted, must go through the usual bumps and knocks and falls and getting into difficult situations that are so very helpful in learning how to survive. Your child is entitled to those experiences which, in many ways, represent the beginnings of his or her learning how to contend with life. On the other hand, one has to be very careful not to carry this too far so as to wind up with a state of rejection....
There is also the matter of taking blindness lightly. Can blindness be a funny thing on occasion? Can you tell a joke about a blind person? Can you laugh at jokes about blind people? Certainly we all laugh at jokes about other minority groups. Can blindness be treated lightly? It's a difficult thing to do perhaps. I've been privy to situations on skiing expeditions where blind people have been lying flat on their faces in the snow, and on canoeing trips where blind people turn their canoes over and are floundering around in the water, simply laughing at themselves, with people around them laughing at them. There are certainly situations in which...blind people can laugh at themselves, and in which others can laugh at blind people. I think that's healthy. I think when you reach a point when you can, in certain situations, take blindness lightly, you are healthier for it. And I think when you reach that point, it's a factor that you can pass on to your kids. I think it's a factor that will make their lives a whole lot healthier and a whole lot more wholesome.
And now let me finish up by raising two other issues briefly, namely educational placement and training and career choice. These factors might be a little off in the future for you, but they're worth considering now.
In the whole service delivery system designed to assist blind people and their families, there are certainly many, many professionals. Some of them are excellent, some are pretty terrible. And there are many in that vast no-man's land somewhere inbetween. It disturbs me that, often as not, in trying to work out an effective educational placement, one gets the distinct impression that professionals in the business are trying to sell something to you. Well, let me simply say this: You must beware of advice which focuses on the negatives of something else. If a representative of an itinerant system is talking to you about your child's going to public school and all you're hearing [from them] is how lousy the school for the blind is; or, on the other hand, a representative from the school for the blind is telling you how awful the public school system is, that's something you want to back away from. Because frankly it isn't a matter of where your child goes, it's a matter of what your child is going to learn. You want to be sure, for example, that your child is going to learn to read Braille. Totally blind or partially sighted, I believe that visually impaired people ought to learn how to read Braille. It is a matter of your child's being literate. I am well aware of the fact that there are very excellent pieces of equipment for enlarging print material and excellent resources for recorded materials. But, in my mind, your child's ability to read Braille should be a primary consideration in any educational program your child enters.
You should ensure that your child is going to get some form of orientation and mobility instruction. You want to be sure there will be learning experiences connected with the skills of daily living which will supplement what you have taught your child over the years. And you should expect (as is the case with any good school program) that your child will be permitted, and in fact encouraged, to become involved in a full physical education program.
Career planning and the kind of work that your youngster will be doing when he or she grows up may well be something that is on your mind now, and will obviously become a reality not too far in the future. Perhaps you can remember back to that long distant past when you were growing up and thinking about becoming a doctor, or nurses, or fireman. Well all kids have dreams and visually handicapped children have such dreams. You'll be working with agency people in regard to those vocational aspirations that you have for your children or your children have for themselves. And, once again, you will want to recognize there will be both some excellent and some pretty poor counselors in the agencies. You don't want to be pushed into the stereotypic kinds of jobs counselors will, on occasion, try to move visually handicapped clients into. Mind you, there is nothing wrong with these jobs into which many blind people have moved successfully. But, on the other hand, you can be imaginative and so can your youngster. There are blind people who are scientists and stock brokers. A variety of jobs are being opened as a result of computer technology. And so you and your child have as much right to be imaginative in the selection of a career as any sighted person.
If you cannot find the kind of role models in the agencies (and in fact even if such role models are there) let me encourage you to contact and learn about the very active consumer groups of the blind which exist in this country. There are affiliates of these consumer groups in every state. Not only will you learn a great deal about advocacy from these organizations, but you' Il meet a vast array of self-confident people who have gone off and established successful lives in a variety of occupations.
And so I'll close and leave you with this final wish. I sincerely hope that someday in the future at least one of your children will be doing what I am doing right now; making a speech to a group of people like yourselves and talking about the wonderful, successful, and exciting life that he or she has had. And I would hope that he or she would attribute a good part of the success to the fact that you, as parents, provided a good and necessary start in those oh so important, early growing up years.
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