Future Reflections July 1982, Vol. 1 No. 4
By John A Cheadle
Children's questions have always been both a delight and an enigma to parents. In answering our children's questions we provide them the opportunity to continue their growth and development and, in so doing, we pave the way to more questioning. Questioning is a way for a child to sort out confusion and resolve concerns. Our answers to these questions will have a tremendous impact on the child. We answer questions in a multitude of ways, and our children learn very early in life that our behavior is often more significant than our words. Further, our words and behavior often seem to the child to be in conflict with each other; this is especially true in the areas of profound questions -- those questions to which we, as adults, are still seeking resolution. Blindness and visual impairment is one area where such profound questions will arise.
My wife had to deal with such a question several months ago. Chaz, our four year old son, ran into the kitchen but, instead of the usual... "Mom, can I have a Graham cracker?" or "Mom, John Earl hit me!"... this time the question was: "Mom, am I blind?" Although we had often discussed blindness and the fact that he did not see everything that others did, Barbara was some taken back at such a direct question. It brought back the memory of the day Barbara and I began to deal with that very question -- the day Chaz became a part of our family. When we decided to adopt a blind child, we did so because we believed that we had carefully examined our beliefs and attitudes regarding blindness. We had been professionally involved in work with the blind, and also active in the National Federation of the Blind for several years. We had many friends and acquaintances throughout the country who were competent and competitive blind adults. We believed than, as now, that the NFB had developed the most accurate and progressive philosophy toward blindness that existed. As a result of all of these factors, we believed that we would be able to provide a blind child with a positive, progressive attitude about blindness.
When we received the medical reports on Chaz, they were several months old. The reports said that he was totally blind in his left eye and had severely restricted vision in his right eye, both due to glaucoma. The report further stated than an operation was needed for the right eye. The adoption agency informed us that there was little chance that he would receive any medical treatment before he was adopted. Knowing the nature of glaucoma, we assumed that he would be totally blind when we received him.
On the evening of March 5,1980, we went to the airport to pick him up. We noticed immediately that he did have some vision in his right eye. Our joy at having him as a member of our family took precedence over all other considerations and it was not until very late that evening that we discussed his vision.
After the children had settled into sleep, we sat at the kitchen table in one of those quiet moods of pleasure and concern to discuss this occurrence. There are moments of emotion thatreveal to each of us the precise nature of what we really believe. Barbara and I had experienced such a moment that evening. Barbara's reaction to the fact that Chaz had some vision was: "Thank God!" My reaction was: "Oh, my God!" While these reactions may seem to be representative of opposite points of view, they are not. What they meant was that neither of us had really resolved the question of whether or not persons who have some vision are blind. We had been confronted with the reality of our own beliefs. We still associated vision (no matter how little) with sightedness, and no vision with blindness. Despite our experiences we still defined blindness on the basis of sight! We talked at length that night, just as we have on many nights since, about blindness and what it really meant to us. We had read and discussed "A Definition of Blindness" written by Dr. Jernigan, President of the National Federation of the Blind (see Myths and Facts About Blindness in this issue). This article remained in the forefront of our minds as we worked our way through our own misconceptions and negative attitudes. It was now time to put the "functional" definition of blindness into practice with our own son. We realized that our questions about Chaz's vision needed to be asked in terms of his ability to function competitively with others. Could he do most things well and competitively with vision, or would he need to learn many alternative techniques in order to do what other kids his age could do? At that time, we did not know the answers and we still do not know all of them, but we have begun to deal with the question consistently with respect to function.
The ability to function at an appropriate level is dependent to a great extent on expectations. Expectations are contingent on a wide variety of personal characteristics: age, intellectual ability, emotional make-up, size, sex, coordination, etc. We decided that we could treat blindness in the same way we treated all of the other characteristics. For example, in the day-to-day affairs of raising children we teach alternative techniques for those tasks that they are capable of performing except for a particular characteristic. If a child is short we teach them to use a stool to reach the sink. If a child is clumsy we may use plastic ware instead of glass or china until further motor-skill development occurs; we do not continue to do everything for our children because of a particular characteristic. Indeed, we regularly teach and use alternative techniques so that our child can continue to grow, develop, and meet expectations. However, when the child happens to be blind (including children with some vision) we often overlook the possibility of alternative techniques or assign some term of inferiority to the technique.
One of the first problems we had to deal with, did not relate to Chaz's vision, but rather to his body build. We discovered that because he was "stout" we could not teach him to use the same techniques in dressing and undressing that we had taught his older "skinny" brother to use. In regards to his vision, we learned many things the first few months. The first thing we observed was that he had very poor, if any depth perception. He could see texture and contrast changes (carpet to tile, cracks in the sidewalk, grass and walk, etc.) but he did not know if that contrast signaled a drop, a step up, or neither. To help him learn to deal with this, I made a cane for him by cutting down a regular NFB cane (child size canes are now available from the NFB. See Hear Ye! Hear Ye! in this issue.) It proved to be most helpful in teaching him about his environment, developing some spatial concepts and giving him confidence in moving about. I understand that a future article will deal exclusively with canes and young children, so I will not expand any further on this experience.
One problem we experienced (and still do) came not from Chaz, but from us. We have found that we have a tendency to assume any difficulty Chaz experiences in doing or learning something must be associated with his vision. Well, that's not so. I particularly noticed this when I was teaching our two sons how to pound nails. I immediately assumed that Chaz's uncoordinated and clumsy efforts were due to his vision; until I realized his brother had the very same problems. Patience and practice eventually made proficient nail-pounders out of both of them. However, I did teach Chaz how to find the nail with his finger, then place the hammer on the nail as he removed his finger. In his first attempts, he held his head so close to the nail in an effort to see it, that he was in real danger of ending up with a bruised or broken nose.
Other alternative techniques Chaz has learned to use include: putting his finger inside his glass when pouring water so he can tell when it is full (we had a flooded kitchen a couple of times before we realized he couldn't see the water); putting his finger over the bristles on his tooth brush when sticking it under the faucet to clean it (again, he couldn't see the water); using touch to buckle his belt, button his shirts, and find the tags on his T-shirts (so he can tell front from back). In some areas, of course, using his vision is best and most appropriate. Barbara does not mind washing his hands and his nose after a creative session with the watercolors or fingerpaints.
Another concern we have is that we not create an environment where Chaz feels pressure to report seeing things he really does not see. This is important for two reasons; first, so that we and he can better determine what his functional vision is; and second, so that Chaz does not get into the habits of "faking sight" and lying to please or meet the expectations of others. Our first rule became: never ask him "Do you see this?" For example, during a drive in the car, we will make comments about the scenery and call our children's attention to this or that. We may say . .. "There are some cows on mothers side" ... but never, "Do you see the cows?" So far, this approach has been successful and helpful.
What does it really mean when a child asks "Am I blind?" In the final analysis it should not mean any more than asking am I a girl? or boy?, am I smart? or short? These characteristics, in and of themselves are merely elements that help comprise the individual. The real question becomes: Can I, as a blind person, or as a boy, or as a girl, or as a short person, compete in all areas of life on an equal basis with my peers? The answer is a resounding Yes! And it is our responsibility as parents to insure that our children have the training and opportunities necessary to come to believe that they are, indeed, equal in all respects to their peers.
John Cheadle, spouse of Editor, Barbara Cheadle, has been in the field of work with the Blind since 1974. He has been a rehabilitation counselor, cane travel teacher, woodshop instructor, and a supervisor. John became a member of the NFB in 1975 and states that is where he received his real training about blindness, and how to best meet the needs of the blind people he served. He currently works for the Missouri Bureau for the Blind.