Future Reflections Fall 1990, Vol. 9 No. 3

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GROWING UP BLIND

by Jan Bailey

[PICTURE] Jan Bailey

Editor's Note: The following article is reprinted from the September, 1989, Braille Monitor.

The following remarks were made at the parents' seminar conducted May 19, 1989, in conjunction with the convention of the National Federation of the Blind of South Dakota. Jan Bailey is one of the leaders of the NFB of Minnesota and works as a counselor for the rehabilitation agency in that state. As you will note, she also has remarkable parents. It is not difficult to understand why Jan Bailey has grown up to be such a well-adjusted, sensible person. Her parents certainly deserve much credit for employing practical good sense and acting on their conviction that their little daughter was, when all was said and done, a normal child. Meet Mr. and Mrs. Bailey as the South Dakota parents and teachers did. Here is the tribute their daughter paid to them:

I am the fourth of nine children, and prior to my birth, my parents had very little knowledge about or exposure to blind people. I once asked my mother how she learned that I was blind. She told me that she took me for a check-up when I was four or five months old and mentioned to the doctor that I did not appear to look at things. He examined my eyes and told her that I was blind. Afterward, my mother got on the streetcar to go home and suddenly began to panic. She wondered what she would do. For a split second she considered putting me down on the seat and leaving me there. Then, she remembered a blind man she had known. He had led a very normal life. He was married, had children, and held a job. She decided that if that was possible for him, then it would be possible for me.

This anecdote illustrates my belief that it is desperately important for parents of blind children to have contact with capable blind adults. We can be role models for your children and can help you as that blind man helped my mother. The National Federation of the Blind is an excellent resource for parents because our membership is made up of thousands of blind people who are leading normal lives.

Like many parents, mine went from doctor to doctor trying to have my sight restored. Part of the problem was that all of the facts about my blindness were not known at that time. The experts did not all recognize that my blindness was caused by receiving too much oxygen in the incubator. Finally, when I was about a year old, my parents took me to a renowned specialist in Salt Lake City, Utah, The doctor examined me and then told my parents, "Quit going to doctors. There is nothing that can be done for your daughter's eyes. She will always be blind. Take her home and treat her just like the rest of your children."To the best of their ability, they did just that. One of the first discoveries my parents made was that I was afraid of a number of things. I disliked anything fuzzy, I did not like loud noises, and I was terrified of the grass. My mother just kept exposing me to fuzzy objects, and one good thing came out of the phobia before I was cured of it. I had developed a habit of throwing my empty bottle out of the crib every night. Since they were made of glass, each night the bottle broke. My mother decided to remedy this situation by wrapping my bottle in a diaper and putting rubber bands around it, but I would have nothing to do with it. I was now afraid of my fuzzy bottle, and I never drank from one again. My mother, however, was persistent and kept exposing me to soft, fuzzy objects, and I soon outgrew that fear.

Since that time I have met a number of blind children with phobias, and I often find that their parents give in, removing the feared objects from their vicinity. My mother theorized that some of my fears developed because I did not see others around me handling objects. She also concluded that when I went to new places and heard noises I had never heard before, I was frightened because I couldn't associate the sound with anything I recognized. She kept exposing me to the things I was afraid of, explaining them and making me touch as many of them as possible. Her theory was that most babies and small children are attracted by what they see. They want what they observe others using. She made a point of taking me everywhere and making me do things. She says I would have been perfectly content to sit in a corner and play, but she would not allow me to do so. She, my father, or one of my brothers or sisters would make me play with them.

Once my father had accepted my blindness, he decided to order some literature about blind children. He received a book in the mail that said: "Put your blind child in a cardboard box in a dark room. Your blind child is very fragile. Let your child explore the box and then the room." My father threw that book away and told my mother that if that was what the experts had to say on the subject, he figured he could manage on his own. He said common sense told him that was the worst piece of advice he had ever received.

When I was two years old, I suddenly stopped talking. I had spoken a few words, but then I quit. After several days, my father said that he'd had enough. He went over to the high chair where I was sitting, picked me up, and sat me down hard. "Say Mama," he said. I said it. Then he picked me up again and sat me down hard and said, "Say Dada." I said it, and from then on I had no more difficulty talking.

At around the same time, my father told me that he was going to show me where things were in the house. He said that I could not be running into them and that I must learn my way around. He took me through all of the rooms and showed me where everything was. Then he said, "Now, when I tell you 'Keep your eyes open,' you'll know that I mean to keep your feelers working and your smeller working and your ears working. It would sound funny if I said that, so you'll know what I mean when I tell you to keep your eyes open."

A short time later I came running into the dining room from the kitchen where I had been playing. I hit my forehead hard on the dining room table, fell down, and began to cry. My mother jumped up to comfort me, but my father told her to let him handle it. He went over, picked me up, gave me a swat on my back end, and said "Now, don't you remember, I showed you where that table was. You can't be running into things. Next time, keep your eyes open." My mother told him she thought he was being too hard on me, but he said I had to learn. I soon stopped crying and went back to playing. A few minutes later, I came running into the dining room again. My father said that you could hardly have put a hair between my forehead and that table before I swerved. I never ran into the table again.

As I mentioned earlier, I was terrified of the grass when I was a young child. Each time my mother went out to hang clothes, she took me with her and put me down on the lawn. I always crawled over onto the cement or gravel, preferring that to the grass. Eventually my father told my mother that he was going to do something about the situation. He took me out to the back yard and proceeded to roll me around on the grass. I began to scream, and the neighbors came running. They told him that he was cruel, but he ignored them. He took me back into the house and told my mother not to say anything more about the grass. I pouted for a few days before coming to my mother one day and asking for my hat and coat. That meant I wanted to go outside to play. She helped me to put on my things and watched me as I went out. I went over to the grass and cautiously extended my toe and touched it. I waited for a second and then explored it with my foot. Soon I was rolling around on the lawn and after that had no fear of grass.

When I was quite young, I remember hearing my mother tell someone that one day she had gone to the store with my father, my brother and sisters, and me. A woman was giving out samples of cheese and crackers. She asked if we would like some, and my mother said we would. The woman proceeded to give us each a cracker. When my turn came, my mother told her that I was blind and just to put the cracker into my hand. The woman began lamenting about how awful it was. My mother simply said, "You don't have to feel sorry for her; just give her the cracker." As young as I was when I first heard this anecdote, it still told me that my parents did not want others to pity me and that they wanted me to be treated like everyone else.

My father has often told me that when I was small, I had some rather strange ideas. One day I handed him a chicken bone from which I had eaten all the meat and asked him to put some more chicken on it. Another day I asked him to lift me up so I could touch the sky. On such occasions he tried to explain the true nature of things so that I would not continue to have misconceptions about my surroundings. He did have quite a time, though, making me understand that I couldn't touch the sky, because he always made a point of letting me touch things in order for me to learn about them.

Once I wanted to touch an elephant at the zoo. My father persuaded the zoo keeper to let me go into the cage and touch it. He didn't want to give me preferential treatment, so he persuaded the poor keeper to let my brothers and sisters go in also.

When I was quite young, a woman from the welfare department who had learned I was blind came to visit my mother. She showed my mother a large wooden shoe and some pieces of cloth with buttons, buttonholes, and snaps on them. She tried to persuade my mother that she needed to purchase these things to teach me to tie my shoes, button my dress, and snap snaps. My mother told her that first, she didn't have the money to buy those things, and second, she didn't see any need for them. She said that when I needed to learn these things, she would teach me using my own clothing.

When I was ready to go to kindergarten, I announced that I wanted to learn how to zip my jacket. I told her that I didn't want to have to ask the teacher to do it for me. I was to go to kindergarten at noon, and I pestered her all morning until I finally learned how to zip that jacket.

In the first grade I began to learn to read. I was very anxious to master this skill because I had heard some talking books, and I wanted to read just like the readers on the records. One day, however, I came home from school in tears and told my parents that my teacher had said that I would not be allowed to check out library books while in first grade. My father could not understand this and so decided to phone the principal. Neither the principal nor the superintendent would overrule my teacher. So, my father called her directly. He tried calmly to persuade her that I should be allowed to check out library books. Finally in exasperation, he said, "Do you have any children?" "No," said the teacher. "Well," he retorted, "I have six of them, and I know that when children are anxious to learn, you shouldn't discourage them." But the teacher wouldn't be moved, so my father told me to go and talk to the librarian. She asked me if I knew what a little white lie was. I told her I didn't. She said that it was a lie that wouldn't hurt anyone. She then told me to tuck a book under my coat and bring it back when I was finished reading it, and she would give me another one. I secretly read library books all during first grade.

Then there was the matter of my walking to school. I announced one day when I was six or seven years old that I thought I should be allowed to walk to school since my brothers and sisters could. Moreover, I wanted to walk by myself. I did not have a cane; back then children didn't use them. My father said that he would show me the way to school, and I could go by myself. After a couple of weeks, I again announced one morning at breakfast that I wanted to walk to school by myself. My father replied that I had been doing so. "No, I haven't," I said. "You've been following me." He admitted that he had been, but he promised that that morning he would not. I could walk to school all by myself.

That night, I came home in tears and told my parents that the superintendent had come out to meet me at the driveway of the school when he saw that my father was not following me. That was not the end of it. A few days later my father got a phone call. "Mr. Bailey," the superintendent said, "You are causing a problem in our school. You are allowing your daughter to walk to school by herself. She has told the other students about it, and now they want to do the same thing." I should point out here that I was attending the Washington School for the Blind in Vancouver, Washington, but I was a day student. There were many other day students in town, and it was their parents who had complained. My father refused to comply with the request. He told the superintendent to tell those parents that they could raise their children the way they wanted to, and he would raise his the way he wanted.

At the age of seven or eight, I told my father I wanted to roller skate. He told me that he would take me out and put a pair of skates on me and take them off again, once. If I could get them back on, I could go skating. I don't suppose he thought I would be able to do it, but we went out and sat on the steps. He showed me one time how to clamp the skates on, how to use a skate key, and how to buckle the straps. After he removed the skates, I put them back on myself. Then he told me I had some boundaries. I could go around the block. If I wanted to roller skate, I had to stay within my boundaries. I skated for hours. That night, the neighbors complained about it. They told my father that it was dangerous and that I would hurt myself. They said it wasn't safe for me to go skating around the block by myself. Again, my father ignored their advice. He told them that if I hurt myself too many times, I would give up roller skating. I did fall down repeatedly. In fact that first day, my legs were bleeding badly when I was through, but I persisted and soon rarely fell.

I also rode my tricycle around the block -- another thing the neighbors didn't approve of. Soon, however, I wanted a bicycle. I worked hard to master the skill, but I soon tired of falling off and gave it up. I guess my father's theory was right. When I hurt myself enough, I made my own choices about what I would and could do.

At age ten or eleven, I became a Campfire Girl. Each year after that my sister and I went door to door selling candy. She went down one block, and I went down another. One year we sold enough candy to earn a campship, which meant that since both of us planned to attend, our parents would have to pay half the cost for each of us. After we had successfully sold all of the candy, my Campfire leader told my parents that I would not be allowed to attend camp because I was blind. They pointed out that my sister could use the whole campship. My father would have none of it. He told the Campfire officials that if I was good enough to sell their candy, then I was good enough to go to their camp. He suggested that they let me come to their camp, and if I caused any problems, he would come and pick me up. I went off to camp and had a great time.

When I was twelve or thirteen years old, I told my mother I wanted her to teach me how to iron. She said that I could not do so because I might burn myself. I recognized that she believed my blindness prevented my learning. This made me angry. I went to my father and tried to get him to intervene, but this time he sided with my mother. One day when they had gone downtown, leaving my older sister in charge, I saw my opportunity. I told her that if she would show me how to iron, I would press all of her clothes. When my parents returned home, there I was, ironing. They never said another word about it.

We moved to Minnesota when I was twelve. There I attended the Minnesota Braille and Sight Saving School until I was a sophomore. That year I took half of my classes at the public high school. The next year I told my parents that I wanted to go to public school. Since we lived in Faribault, where the Braille School was located, the public school denied me entrance. They did admit a partially sighted student. However, they said that I would not be able to read the books in their library, and that I would use all of my energy trying to find my way around the school. I would be too tired to study. I had gone to Minneapolis the summer after my sophomore year to a rehabilitation center to learn how to use a cane. So I took a day off, returned by bus to Faribault by myself, and went to call on the Superintendent to plead my case. He refused to see me. The school district took the position that since the schools for the deaf and blind were in Faribault, they did not have to let disabled students attend public schools. This was before the passage of Public Law 94-142.

I wrote to my state senator and representative, my United States senator, and to the governor of the state. But they all wrote back to say that they were sorry but my problem was out of their jurisdiction. Since my parents had very little extra money, they could not afford to hire a lawyer. I wish I had known then about the National Federation of the Blind. When I was going through that struggle, I felt very alone. I didn't know that other blind people had similar problems.

My parents heard that a Catholic school in Faribault (Bethelehem Academy) had enrolled deaf students since the public schools would not admit them either. My father and I went to Bethelehem Academy and persuaded the principal to admit me. My parents had eight children at the time and did not have the two hundred dollars for my tuition. That summer my mother went to work in the corn canning plant to earn enough for my tuition and uniform, and in the fall I entered Bethelehem Academy, where I was on the honor roll.

During my sophomore year in college I came home and told my parents that I wanted to move off campus into an apartment with a friend. They said that they would not allow me to do so, and despite my many arguments, they did not relent. When I returned to school, I wrote them a letter reminding them that they had always taught me to be independent and giving them many reasons why I felt they should let me move into an apartment. My mother wrote back and said that anyone who could think up that many arguments and present them so eloquently should win the point. They relented and let me move in with my friend. When I graduated from college, my rehabilitation counselor encouraged me to go to graduate school to become one myself. I resisted doing this because I wanted to get a job in social work, for which I had been trained. I think in the back of my mind I also wanted to know for a certainty that I could compete in something other than work with the blind. Five years later I left Las Vegas where I had been working in a nursing home as a social worker and returned to Minnesota. I heard about a job opening in the Rochester district office of Minnesota State Services for the Blind, applied for it, and was hired. I decided to take that job because I knew that there are many blind people who have not had good opportunities, and I wanted to have a hand in making some changes in the rehabilitation system.

I realize that I was fortunate to have the parents I had, who taught me early in Life that they had high expectations for me and that I could live a normal and productive life. That is my hope for you today: that you will have high expectations for your children and that you will let them know you believe they can succeed.

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