American Action Fund for Blind Children and Adults
Future Reflections Special Issue: The Federation in Partnership LEARNING TOGETHER
Blindness: What It Means in the Mind of a Blind Child
by Ramona Walhof
Reprinted from Future Reflections, Volume 15, Number 2, Spring 1996
From the Editor: Recently Future Reflections received a request from Oxford University Press. The publisher asked to reprint excerpts from an article by Ramona Walhof in an upcoming book. The book, by Karin Sternberg and tentatively entitled The 21st-Century Child, will be published in the fall of this year. It is expected to sell some 6,900 copies in print and electronic formats. Through this publication our Federation literature and our perspective on blindness will reach a new audience of parents and educators.
Here is Ramona Walhof's article, which is as relevant today as it was when it first appeared twenty-six years ago. The article is based on a speech Ramona gave at the 1995 NFB National Convention.
Perhaps you have heard the story about Johnny, who came running in from play to ask, "Mommy, Mommy, where did I come from?" Mommy thought four years old was a little young to be asking about the birds and the bees, but she supposed she was up to it. She explained about growing for nine months in the uterus inside her tummy and then being born. Johnny was impatient to go back outside, but on the way he called over his shoulder, "I came from a uterus, but Michael came from California."
We cannot read our children's minds. If we could, there would be many surprises. This is true of blindness, just as it is regarding other things. But there are some general things we do know.
A child who is born blind does not know what it is like to see. Until he or she is old enough to begin to understand how other people do things, blindness seems normal. Therefore, a small child will not feel bad about blindness until someone teaches him or her (directly or indirectly) to feel bad.
Explaining Blindness
When my sighted children were little, they treated me in some ways that were different. If they showed me something, they put my hand on it. I did not teach them to do this; it was obvious to them. They knew what worked, but that didn't mean they understood blindness; they didn't—not at that age, anyway. A blind child is the same. They learn what works, and they do it. But that doesn't mean they understand what blindness is and isn't.
Blindness is something we explain little by little as a child progresses toward school. Because nobody knows when a blind child really understands what blindness is, it should be discussed in a positive manner. Anything associated with blindness should also be approached positively. Learning to use a white cane or being able to read Braille can be opportunities and privileges, not last resorts. Braille is a special way to read with your fingers. Positive approaches convey the attitude, "It's okay to be blind."
We must not lament the fact that a child cannot see. It isn't helpful to make comments such as, "I wish you could see the birds out the window," or "I wish you could see the pictures in this book." Instead we can say, "Do you hear the birds singing? They sound nice. They have pretty colored feathers that look nice, too," or "This is a funny picture. It shows an elephant in a dress! Isn't that silly? Do you remember the elephant you rode on at the zoo? Can you imagine it in a dress?"
In other words, we must share what we see with a blind child as a pleasant and normal part of communicating, not as a constant sad reminder of something the child is lacking. It is impossible to guard blind children from all excessive admiring, crying, and gushing about blindness, and parents can begin by setting an example. This means getting your own grief and frustration about blindness out of your system as early as possible. You have a good peer support group right here to help you through that.
To See or Not to See
I recommend you don't spend a lot of time talking about how much your child can see. Neighbors, other family members, friends, and even strangers will want to do that. They are curious and being friendly when they say to your child, "How much can you see? Can you count my fingers? Can you see that color? Can you see across the street?" Sometimes the child tries to cooperate, and sometimes he/she doesn't. Either way, too much talk about what the child can see will be boring and confusing. Why does it matter so much? Is the amount a child can see really the most interesting and important part of him or her?
Of course the doctor must do eye tests. As a parent you want to have some idea of what your child can do using vision, but this is enough.
Blind people can tell you about the different reactions they had as children to all this discussion about seeing. I learned to lie about it. I tried to make people happy so they would leave me alone and I could go on to other things. Pretending to see sometimes got me special privileges and prestige at the school for the blind, and I knew I made my family members happy if I said I could see things. Nobody meant to teach me to lie, but that's what they did.
And what about using the word blind? Does it make you uncomfortable? It might be hard for you, but it could be a relief for your child to be able to name the difference he senses, a difference no one will talk about directly. I can remember feeling that something was wrong with me before anyone used the word blind. When I was in kindergarten in public school, the teacher guided my hand to teach me to print. I couldn't see the large letters she put on the paper. I learned to print, but the whole thing was embarrassing and confusing to me. Some explanation about what was happening might have been helpful, although I know that the adults involved were as unsure about what to do as I was.
An even bigger concern for me in kindergarten, though, was the bathroom. From the kindergarten room you had to go across a big hallway, down a flight of stairs, around a few corners, and there was the bathroom right next to the door that led to the playground. My class always went to the bathroom just before recess, and I found it very hard to wait. It was all right to go earlier, and I know that other children did, but I was sure I could not see well enough to find my way. I did not dare admit this to anyone. One day when the teacher asked me why my dress was wet, I told her I didn't know. I did not associate this problem with blindness, but I now do. I am not aware that the teacher or my mother ever figured it out.
It's Okay to Be Blind
Your child needs reassurance that blindness is okay, even before he or she really understands what blindness is. This is true because of what others say about it, and because a blind youngster may have fears (as I did) that are associated with their lack of vision. If you have created an atmosphere where it's okay to talk about blindness, your child will have the language and the "permission" needed to express some of the things he or she is thinking or experiencing.
When a blind child is little, he or she may not have much interest in what you see. You may drive along the road and describe beautiful scenery, and your child may totally ignore you. Because children express no interest, that doesn't mean you should quit talking about what you see, but do it in small doses. You know that you get information from all directions through your eyes, both close up and far away. Your child doesn't know what you see. Gradually, he or she will learn—if you keep talking.
It is important that a blind child learn how to interact with people who are getting information visually. In one sense your child may borrow your eyes to read a story, learn about colors, identify a noise, and so forth.
Sight is convenient, and blind people rely on sighted people for certain things. Blind children need to learn how eyesight works and how to interact with sighted people. It's a part of learning about blindness. But too much reliance upon someone else's sight deprives the child of skill and confidence. Thus, a blind child must learn to balance trusting their blind techniques and understanding the uses of vision. This is part of growing up for a blind child. It is not a disaster if we don't understand it all immediately.
Several parents have mentioned to me lately that their blind children seem to have trouble understanding humor. I would not hesitate to describe some visual humor to your children, but I wouldn't worry if they miss some jokes. It's good to describe some cartoons so that your child comes to understand that humor is often based on weird impressions shown in pictures. My mother used to read the comic papers to me. I am sure this was helpful, but I was often slow to understand the jokes.
Gathering Information
Blind children must learn to get information from sighted people for many different purposes. This is part of a life-long process.
We keep learning about eyesight, just as we keep learning about other things. When I was forty or so I was riding down the street with my two sighted teenagers, and I wanted to get some information about street signs. I said, "I want you to read me every sign you see." That was a mistake! They thought this was a wonderful opportunity. They couldn't talk fast enough to read all the signs out loud. They were deliberately taking advantage of the situation to read things they knew I didn't want to know (not an unusual attitude for a teenager), but I learned something new from this experience. I knew that in a business district there are signs on practically every building, but I really had no concept of how many signs you could read while driving down one street.
I tell you this story to show how a blind person continues to learn about seeing. The process needs to start young. Your awareness of this process will help you help your child build a better grasp of how vision is used.
When my son was three years old, he taught me something I found instructive. He was a sighted child. I already knew how blind children learn about color, for I was once a blind child and grew up with other blind children. We learned by listening to what people said about color. As we grew older, we learned to do things with color based on what others were doing and saying. What I didn't know is that this is the way sighted children learn about color, too.
My son had a pair of comfortable, striped, knit pants, and he had a nice comfortable T-shirt that was absolutely the wrong color to wear with those pants! In typical three-year-old style, he wanted to wear them together. He liked them, so they must look good together. I had to teach him that other people said they didn't look good together. We had similar experiences when matching other clothes he liked.
This is the same lesson you teach a blind child. A sighted child sees the colors and a blind child doesn't, but they both must learn what the culture agrees is okay in using colors.
The Nature of Learning
You have heard statistics about how much learning is visual. These figures are often used to indicate that blind children don't learn as much or as fast as other children do. This is not necessarily so, however. It is only true when we don't use the alternative techniques that are available to the blind.
If a blind infant drops a set of keys on the floor, and you lean down to pick them up, that can be a fun game. If you lower the baby down and put his or her hand on the keys, it might be even more fun. If you encourage the little one to move a hand back and forth on the floor to find the keys, that's another kind of game, and that's learning. As the baby becomes a toddler, a little talk about where things go when they get thrown and dropped increases learning gradually. Sometimes the child will cooperate and enjoy the games, and sometimes not. But you keep playing them and making them more challenging and complex as the child learns.
My friend Ali was three years old when she first came to my house. She is blind and has mild cerebral palsy, so she has been slow to walk. However, she covers a lot of ground in her crawling. Within minutes after arriving at my house, Ali was sitting in front of the refrigerator in the middle of a crowd of people in the kitchen, and she was in danger of being stepped on. Her father rescued her and explained that Ali often heads for the fridge in new houses. She must find that big metal box with a motor humming and air blowing out very interesting.
Later I learned from Ali's mother that she also likes to get things out of the fridge (if she can reach them) when the door is open. I have no idea when Ali made the connection between the fan in the fridge and the food, but I know she did, and that's learning. It may not be exactly the same pattern that another child would follow, but that doesn't matter. Ali learned about the fridge, and that's what is important.
We reduce blindness to the level of a nuisance by using our own imaginations to figure out what techniques are best suited to specific experiences. Just because you never saw someone who is blind doing a thing doesn't mean it can't be done.
It can be helpful, as you raise a blind child, to observe how sighted children learn. Here is an example.
When I was visiting my daughter's Sunday school class of three-year-olds, one little boy, Thomas, arrived early. My daughter gave him crayons to keep him busy until she and the other children were ready for class. After coloring for a while, Thomas reached for the roll of Scotch tape that was nearby. It was clear to me that he did not know how to get the end loose from the dispenser, so I showed him how to do it.
If Thomas had been blind, he might not have noticed the tape an arm's reach away. I would have had to tell him it was there, or I might have prompted him to explore until he found it. Also, I would have used different techniques to show him what to do with it. But using tape should be as normal and typical for the blind three-year-old as it is for the sighted three-year-old. If we watch a sighted child doing something like this, it prods us to offer the same opportunity to our blind child. It is a simple matter to say, "Oh, look at this. What do you suppose we can do with it? Here, let me show you." So what if the child makes a big mess with the tape? That's the way kids learn.
Paying attention to children in general can help us be on our toes in offering new learning experiences to blind children. It is really just as simple as that—not anything to worry about, just a guide that can be useful.
Getting to Know You
Like other children, blind children need to learn about appropriate and inappropriate behavior. This gets a little complicated sometimes, because blind children should do some things differently. For example, it is okay for a blind baby to feel your face, and they often do. But this behavior becomes socially unacceptable at a very young age. Before school age a blind child needs to learn that it is not a good idea to put their hands all over other people. It is better for a young boy to be scolded and learn a lesson about getting along with his peers than for him to be branded "to be avoided" by his classmates. This means parents have an extra responsibility in teaching social skills to their blind youngsters. Blind children need information, even when they don't ask for it and don't take it. We must keep reminding them when we see inappropriate behavior.
When my children were small, I grew very tired of having to fuss at them for doing the same thing over and over. I tried to be creative in finding ways not to nag. This spring my youngest graduated from college, a real milestone for both of us. He is selling books this summer, as he has done throughout college. He said to me, "Don't let me stay with the company beyond the summer." Amazed, I asked what he wanted me to do about it if he did. "Nag me," he answered. I told him I didn't like to nag, and I thought he didn't like being nagged, either. What do you suppose he said? "Sometimes it works." I found that most interesting, and I pass it on, for what it is worth.
Many blind children feel no need to hold their heads erect. Not only does this look funny, it also causes underdevelopment of the muscles in the neck and back. Constant reminders and creative motivators must be tried. There is no simple solution, but it's worth working on. When they get to be sixteen or twenty, they will be very glad if they've developed the practice of holding their heads up and looking at other people.
One evening I was talking with a blind eight-year-old who was jumping up and down and flopping his body around. Thinking I could subtly change this behavior, I suggested we sit down. We did and continued our conversation, and he continued to jump around. By and by I mentioned that most eight-year-olds don't jump around all the time. "Oh," he said, "I do that all the time."
"Yes," I said, "that's why I brought it up. It makes you look funny."
I still did not get much response, but repetition of the same message in different ways will get through. Sometimes we just have to figure out how to make the message matter, and there may be some value in using a blend of shock techniques and repetition. No technique is right for every situation, and frequently a change of emphasis from day-to-day is desirable.
Learning from the Pros
Today most blind children have far less contact with each other than when I was young and most of us went to schools for the blind or resource classrooms. Being one blind person among hundreds of sighted children in public schools and in the neighborhood can be lonely. There is a void in learning about blindness. In fact, children may learn, to their detriment, to take advantage of other people's attitudes about blindness.
Public attitudes about blindness may be the most difficult part of raising a blind child, both for you and for your child. Some of you may know better examples than I do, but let me share just one.
Nine-year-old Melissa lived in a house about two hundred yards from the road where the school bus picked her up. There was a dry creek bed with a bridge across it between her door and where she caught the school bus. Melissa was still learning how to use her cane, and she resisted taking it when she should. Her mother explained to her what could happen if she didn't use her cane, but Melissa continued to resist taking it.
Sure enough, one morning Melissa went racing out the door to catch the bus—without her cane—and fell in the creek bed. Melissa was not seriously hurt, but the neighbors were angry. They felt Mom should never let Melissa out of her sight. They didn't think Melissa could be safe, even with the cane. Though Mom had the right attitude, it was difficult for her to stand her ground when all the neighbors were mad at her. I reassured Mom that she was right on target. Sometimes it is hard not to fall into traps formed by public attitudes.
Without realizing what they are doing, blind children often learn to depend on sighted people more than they need to or should. Elementary school is not too soon for a blind child to begin traveling independently, keeping track of print papers, looking for things that are lost or dropped, and keeping track of clothes that match. As a child matures, he or she needs to develop greater self-reliance in all these areas.
This spring Kathryn was a model in a fashion show. She had less time than I wished to practice her route across the stage, down the steps, around a couple of corners, and down the aisle through the audience. Still she did just fine, and she looked good. As she came down the steps someone could not resist the need to tell her where she should go. A lipreader at a nearby table reported that Kathryn said in a whisper without looking around, "I can do it myself." Kathryn handled the situation, but it must have been demoralizing and embarrassing.
How many times in a day or a week do children like Kathryn have to face somebody who does not really believe in them? What does it do to their confidence and self-esteem? We cannot quickly change these attitudes, but what we have to offer is valuable. We can reassure blind children that somebody does understand. We can offer the opportunity to talk about blindness and to learn the skills that help reduce it to the level of a nuisance. We can share with these children the successes, frustrations, grief, and excitement of growing up as a blind person.
Blindness is a characteristic that these children do not share with most of their peers. To talk about it when they can is important, and we must find ways to give them this opportunity.
A child needs to be encouraged to understand how he or she is affected by blindness. I have been asked many questions by blind youngsters that demonstrate they want to talk about it. They ask me, "When should I use my cane, and when should I walk with someone else?" "How do I decide when I really need Braille?" "If other people seem to know what is going on and I don't, what can I do about it?" "In a group I don't always like to ask for help or information. But if I'm quiet, I get left out or forgotten, and I don't like that either. I know I can be noticed by calling attention to blindness, but sometimes that isn't much fun." "What will my life be like when I grow up? All the adults I know can see." "How will I learn to put make-up on?" "What will happen if I don't drive a car?"
Whether or not you hear these questions in so many words, you need to realize that blind children are thinking about these things. You and your children need to talk about these and other matters and work out answers. One of the resources available to you through the National Federation of the Blind (NFB) comes in the form of people who have answers to these questions.
The other day I visited a one-week camp for blind children who attend public school in Idaho. I was introduced to a group of about ten teenagers. Most had returned to the camp for at least the second year. After telling them who I was, I asked why they liked the camp and why they came back. No answers. I told them I thought I knew. I suggested that the camp gives them an opportunity to share experiences with others who are blind.
Immediately, the room was a-buzz with chatter and questions. My few minutes grew into a whole class period. These youngsters wanted to talk about jobs, careers, and discrimination—what it is and what to do about it; the attitudes of parents, teachers, and peers about blindness; and all the topics we have touched on this morning. At that camp there were counselors who would discuss blindness in the evenings, but they were not blind themselves. It seems to make a difference.
I didn't have all the answers to the children's questions, but that did not seem to matter. They were eager to share with me and to have my thoughts to ponder.
The NFB Training Centers in Louisiana, Colorado, and Minnesota sponsor summer programs for blind children and teens. Their staff members—most of whom are blind like me—will tell you the same thing. Children are eager to learn about blindness from those they know have had real experiences. They are glad for the opportunity to experiment with the skills and attitudes about blindness that they are learning.
Kathryn is ten years old, and I have known her for five or six years. When I see her, Kathryn always wants to take hold of my cane. At first she wanted to talk about it and compare it to her own. Now she just wants to grasp it for a moment and go on with whatever she is doing and saying. I think this is her way of saying, "I'm glad you and I have canes in common."
Marching Together
The National Federation of the Blind provides the rhythm and the melody for us all to march forward together to change public attitudes about blindness. We have a young, energetic leader who depends on all of us to make the music and move ahead. Our children are learning to play the instruments that broadcast our message to the world.
One or a few persons cannot make the band move forward or sound good. The fullness of sound and the impressiveness of configurations on the field come from planning and rehearsals. Each individual must play a part and coordinate with the others. Because of our togetherness, we are all more successful than any could be alone.
We meet at this convention to renew our spirits and improve our skills and our understanding. As adults, both blind and sighted, we need what we came here to partake of. And we bring our children, for they need it, too. They need what they will find this week, and they depend on us throughout the year to help them improve their skills and grow in their understanding.
When our children become the section leaders, one day our band will be welcomed by society as a leading part of the parade, not merely with sympathy because the blind are doing better than expected, but with honor because the high quality of our performance can no longer be denied.
This is what we hope and plan for our children, and this is what they dream. We must do what we can to facilitate their dreams. This is our goal for ourselves, and this is our pledge to the next generation!