Future Reflections Fall 1992, Vol. 11 No. 4
THE PARENT'S ROLE IN CHANGING WHAT IT MEANS TO BE BLIND
by Barbara Pierce
Editor's Note: The following article was the keynote address at the 1991 NFB Parents of Blind Children Seminar in New Orleans. The seminar was sponsored, as it is every year, by the Parents of Blind Children Division of the National Federation of the Blind and chaired by the president of the divisionBarbara Cheadle.
With Barbara's unerring wisdom, she has called me forward to be an expert. My last child just graduated from high school, which means that, for better or worse, I've done what I can as a parentexcept for paying the college bills and worrying. I'm in effect finished with what I can do to shape my children, which in turn means that I will necessarily begin to forget all the tough times. This makes me an expert, but I hope you will take what I have to say seriously, despite my now lofty status.
One of the most important jobs that parents have to do is to set standards and to communicate those standards to their children. We do that all the time. Probably the most frequently used and least effective method we employ as parents is precept. "Tuck in your shirt." "Keep your mouth closed when you chew." "Have you written that thank-you note?": those kinds of things. Far more pervasively and more effectively, we establish standards in our children's lives by example and by expectation. This is certainly true in every area of life, but it is nowhere more evident than in teaching blindness-connected skills and attitudes. For after all, your blind children, whether they be your students or your own youngsters, are surrounded by some pretty lousy attitudes and some pretty low standards.
Your job is to wave the flag and to make sure that the expectations and the standards they adopt as their own are high. What your attitudes are will, in significant measure, determine what your children think about blindness and think about themselves as blind people. So you've got to be careful and watchful and mindful at all times about what it is that you are doing and saying and demonstrating and communicating to your child.
You should keep a close eye on what sighted children of your youngster's own age and ability level are doing. Are they choosing their own clothing in the morning? Then your child ought to be learning that stripes and plaidswhatever those aredon't go together, that red and orange are not a happy combination, that Bermuda shorts are not the appropriate thing to wear to church on Sunday morning. Blind children need to learn those things, and they don't learn them by having the clothes plunked down on the bottom of their beds every morning for them with the instruction to climb into them.
Do you expect your other children to do chores around the house? Then don't give the blind child the easy ones. The way to make siblings dislike a blind child is always to give him or her the easy things to do or always to let the blind kid off:
"But it's hard. I didn't get the window clean because I can't see it."
"Go back and do it again, kid." As a parent or a teacher, you've got to keep your standards high.
I remember being twelve. My mother didn't know other blind children. It was I who discovered that my friends all washed their own hair. At that time we set our hair and slept on curlers. Remember? They were all doing that for themselves. I wasn't, and I brought this to my mother's attention. I hope that, as alert parents, you would be the ones to notice this and bring it to your child's attention. She simply didn't have any way of recognizing that gap, but she had the wit and the good sense to say, "Here's the shampoo. I think it'll be easier for you the first time to go wash it in the basement than in the bathtub. Shout when you think it's clean, and I'll check you." That was the last time she had anything to do with washing my hair. You've got to be alert to that sort of situation.
I'm going to give you some notions about principles that you can apply in helping yourself to establish good, healthy standards and expectations for your youngsters. The first, I would say, is to make sure you understand and live out the distinction between explanations about blindness and using blindness as an excuse. For example, when a sighted person walks down the street and bumps into parked tricycles, garbage cans, an individual looking at store window displays, or parking meters, one assumeswith some reasonthat the person has probably had two or three too many to drink. When a blind person using a white cane brings the cane tip in contact with objects immediately in his or her path, that is an appropriate use of the white cane. He does not need to feel apologetic about it. This does not mean, by the way, that a blind person shouldn't apologize if she taps the cane on somebody's ankle. It doesn't mean that you shouldn't attempt to alter the technique of a child who uses a cane like a scythe, trying to cut people off at the ankles, or like a lance, attempting to impale people. You certainly need to discourage that kind of cane use. It is appropriate to use a cane and to move it in an arc adapted to the density of the crowd in front of a child or an adult, for that matter. That is a reasonable explanation of the cane technique used by blind people.
When a blind or low vision person drops something and doesn't see where it lands, it is appropriate for that person, in an orderly, efficient way, to search the areato listen for where the thing fell and then to quarter the area, seeking it tactilely. It is no more inappropriate to search with the hands in an orderly fashion for something than it is to glance around and survey an area to see where the thing landed and pick it up. You do not benefit the child by always handing back things that have been dropped. A kid will not be discouraged from dropping a stylus on the floor constantly if you always retrieve it. It doesn't help anyone for you to think of such an activity or to describe it to the child as "groping around" for something. It certainly does not help for you to say to a child with limited vision, "If you just stand there and look for it, you'd do better." If the child has seen where it fell and can go and pick it up, that's fine. Otherwise, the most effective way is usually to hunt for it tactilely.
That is very different from allowing a child, yourself, or anybody else to use blindness as an excuse. It is simply not appropriate to say, "The child is blind and doesn't know where the speaker is standing and therefore shouldn't be expected to face him or her." In this society it is courteous to look at the person speaking. It is appropriate for you to give information to the child who hasn't figured out where the speaker is. Quietly say, "Turn around and look behind you," or "I'm over here. Look at me when we're talking." These are important pieces of information for a child who hasn't figured out where the speaker is.
I was at an end-of-the-year school banquet this spring, and the principal spoke from one side of the room without a microphone to start parents through the dinner line. I thought, "Aha, that's where the head table is." When the program began and the amplified voices were sounding a little bit further off to my right from there, I thought, "Oh well, he wasn't at the microphone. He's now moved to the podium. It's there at the head table." I therefore looked in the direction from which I heard the voices. It was halfway through the dinner when my husband said, "The speaker is on the other side of you." In reality, the podium was very close to me and on the opposite side from the direction I had been facing. A public address system speaker was at the back of the room, and that is what I was hearing. The school had bought a new PA system, and I had made assumptions. I was annoyed with my husband because he hadn't given me the information earlier, and I was furious with myself for not checking on where the speaker was. My performance was simply not acceptable.
Worry when your kid comes home in the fifth grade and says, "Teacher says I don't have to take spelling tests. If I work with the V.I. teacher on the spelling, it'll be okay." Since when was it okay for your child to have fewer grades in spelling than everybody else? The message given is that spelling is not important for a blind child. Object.
Worry when your high school sophomore dreads for an entire semester the assignment of the research paper and then comes home higher than a kite because she's just been told by her English teacher that he realizes research would be extremely hard for her, and therefore if she will do a little bit of research and then sit down and tell him about it on a cassette tape, that will be sufficient. That child has just lost seventy-five percent of the value of a research paper. As an old English teacher and as the wife of an English professor, I can tell you that the discipline of organizing your thinking, shaping it into paragraphs, finding the right words, spelling them accurately, punctuating them correctly, and then figuring out a way of getting them legibly presented for consideration by the teacher is a significant measure of the discipline. Since when did your child not need that kind of practice in order to succeed in life?
Be careful when you see your child trying to use blindness as an excuse for getting out of punishment. Now it's confession time. I hadn't thought about this story in years. I was in the seventh grade when somebody in my home room sent a spitball toward the homeroom teacher, and he didn't know who the offender was. The guy didn't stand up and confess. Nobody would rat on him, so the teacher said, "All right, you all stay in for detention until somebody tells me who did this." Whenever I missed my school bus, I had to take the streetcar unless I worked it out with my mother that she'd pick me up from school. I wasn't certain of the route home on that streetcar. I was nervous about it. I didn't want to have to stay after school for detention. It wasn't convenient or helpful to me.
I walked up to that man and said, "I don't think that I was guilty of doing whatever it was, but would you tell me what a spitball is?" The man should have known that any twelve-year-old knows what a spitball is, even if she's not certain about how to propel it through the air at the speed with which that one had come at him.
He should have said to me, "You'll stay a week longer than everybody else does," but he didn't. His eyes misted over, and he told me that I certainly didn't have to stay. I am ashamed to admit this to you.
I also recognize that if your kid has any sense you will be the last to hear such stories, but you have my permission to use this story in a sort of prophylactic way: "You try something like that, kiddo, and we'll have home detention." That is not appropriate behavior for anybody, and what does it do to a child's image in the classroom? It is horrible to contemplate! It took me years, I'm sure, to recover in the eyes of my classmates from that particular episode.
Well, I've given you the easy examples for distinguishing between right and wrong behavior. Unfortunately, when the problems really arise, they tend to come in shades of gray, not black and white, and they tend to come at about ten o'clock at night when everybody's exhausted. What do you do when your youngster announces at 9:30 that there are twenty-four math problems to be done by tomorrow and then brightly points out that the math teacher has said that it would be all right for him to do every other problem?
If that child cannot manage to stay up to do all twenty-four problems, it will be more salutary to take the lowered grade on the homework assignment for having done the first twelve than to get full marks for having done the even-numbered problems. What you really have to teach that child is that maybe he ought to start the math before 9:30 at night. "If you're having trouble with it, let's work on it together. Let's find a way of solving the problem, but let's not get out of the assignment." Since when are blind people so much better at math that they don't need to get all the exercise and practice that everybody else does?
Here is an even harder one. Your youngster brings to you the English assignment that has just been laboriously typed on the typewriter, and you discover that the two-year-old was messing with the keyboard and flipped the stencil key or that the typewriter ribbon ran out. What do you do then? You don't say, "I'll write a note tomorrow telling the teacher that you really did it, but that, because you are blind, you didn't notice that the print wasn't on the page."
I think of a time when I was a dinner guest in the home of a family with a blind youngster. The mother was busy entertaining the guests, preparing the meal, and supervising the homework process going on downstairs in the basement, where the computer was. The youngster did the homework with some grumbling. He has a tidy mind and doesn't like to have extra things left on his directory when he finishes with assignments. When he gets out of a document and is finished with itlike a homework assignmenthe, as a matter of reflex habit, erases the document. He meant to send this one to the printer; instead he sent it into oblivion. What did Mom say"Oh, poor child. I'll fix it with the teacher" or "I'll help you with it after dinner?" Maybe it was easier to do the right thing because there was a guest present, and she had no alternative. She sent him back down with the cheering news that "It will be easier to do the second time around because you'll remember some of the answers, and maybe you'll also remember not to send it into oblivion before you've printed it the next time around."
It's a hard way to go, but you are shaping your child's character. You are building self-respect and the implicit knowledge in your youngster that he or she is as good as everybody else. There are times when, from a parent's standpoint, it seems easier to give in and take some of the perks that are offered. You'll see signs some places, "Disabled people half price" or "Disabled children free." It's tempting when it's an $8.00 fee to line right up and take advantage of that sort of thing. It's very tempting when you see a long line at an amusement park, and people are willing to let you cut in at the front because you have a blind child. But there isn't any privilege that doesn't have its repercussions, and there is no such thing as a free lunch.
If people give freebies to blind people, it is because they think they are pitiable. If they let youas my children used to saytake cuts in a line, it's because they think that a blind child is fragile, can't stand up, can't wait in line. They feel sorry for the child and for you for having such a child. Is that really the message you want to give about competence?
I was talking to the parent of a disabled youngster, who said, "You know, I just don't understand why you fuss about pre-boarding aircraft. We have always been invited to pre-board, and it saves such a hassle."
I said to him, "Look, all parents with young children are invited to pre-board. It's easier to stow an infant, diaper bags, toddler, and Teddy bearsall of the paraphernalia that goes with young childrenwithout people standing in the aisle behind you mentally or literally tapping their feet, waiting for you to get out of the way. That is appropriate. It is also appropriate, if with an older disabled child you genuinely require more time to get down the jetway or into your row, to take that invitation to pre-board. But if you don't need the time, if the child really can move along as fast as anyone else, then do you really want to give your child the message that he or she has to go first, has to be singled out, has to endure being stared at with a lump in the throat and tears in the eyes, has to have different rules applied to him or her?"
Let me be clear. One of the most important things you need to do is to help your child come to an accurate understanding of the amount of help he or she really does need. Last fall I was on an international flight alone. When you are up at forty-thousand feet, they pass out these forms that you have to fill out before you can get through Immigration. I was in a row with no other people. There was nobody I could charm into volunteering to help me fill out this form. I stopped a crew member and said, "Unless you think that I can fill out this form in Immigration, I think probably a crew member, at a convenient time, could help me a great deal by filling out this form to my dictation." She came back when she had a moment and filled out the form. That was an appropriate request for assistance because I really did need the help.
It is important that your child learn to understand what is a legitimate and appropriate request for additional assistance. Part of your job is to help your child define for himself or herself what constitutes independence. I once learned of an elderly gentleman who had lost his sight late in life. He made the comment that he loved to go grocery shopping since he had gone blind, because his daughter walked along in front of the cart pulling it, and he walked along behind it with his hands on the cart handle and he didn't have to use his cane. His definition of independence was not looking blind. That was the only time in his life that he didn't look blind. He wasn't independent. He wasn't traveling alone; he didn't even have a cane with him. If his daughter had wandered off, he would have been stranded. That was not independence. He was seventy-five, and there was no changing his point of view. But your children are young.
Independence is going where you want to, when you want to, and doing what you want to by yourself, organizing what you want to do and getting it done. If you can do that, whether you're using readers or taxis or canes or a dog, you're independent. It is important that you understand that that's what constitutes independence. Your job is to teach your child and the people around your child the value of some of the things that are so very important about blindness: why it is necessary for a blind youngster to master Braille and to be able to use a slate and stylus efficiently, rapidly, and effectively; why it's important for your child to be doing all of the schoolwork; why it's important not to jump ahead in line; why audible traffic signals, for example, are a dangerous and lousy exchange for good cane travel training.
How do you know? How do you know what the most important things are? I've told you a number of them today. I guarantee you there are ten thousand more and at least seventy-three times every single day when you have got to know what it is that blind people need to have and do and how they ought to be thinking about themselves and what is the right choice for your child today. There aren't any absolute black-and-white, yes-or-no answers that can be laid down. Otherwise, we could print them all up, and everybody would then know. It doesn't work that way.
How do you know? You look around you. You find blind adults who are the kind of people you would like to see your child grow up to be. And you can be sure that if that person is the kind of person that you hope your child will be, then the standards and the attitudes that person has are probably the ones you want to instill in your youngster. You read the Braille Monitor and Future ReflectionsI might say that the summer issue is absolutely smashing; it's just wonderful! You read the articles and ponder them in your heart. We try to include things that help people to develop good attitudes about blindness. These should be of some real help and instruction to you so that gradually your reflexes will become good and solid, and you will begin to teach your child.
You will find, as your child grows in the normal natural progression that happens with all children, that your child will begin to assume the responsibility for initiating the explanations of why it is that he or she has to submit the English paper in print rather than on cassette, for explaining to the college professor why, although the map drill isn't very useful, he or she expects to be held responsible for all the geographic information that the other students will get from drawing maps. Your child will begin to have the solid, strong attitudes about blindness that will result in his or her living a full and productive life, and your job will be complete.