Future Reflections Winter/Spring 1998, Vol. 17 No. 1
Gary Wunder at the 1997
NFB Convention Roll Call of States.
Editor's Note: Does that title sound
(Retinopathy of Prematurity)--once called Retrolental Fibroplasia
was a common cause of blindness among children born prematurely in
the late 40's and early 50's. The parents of those children had
little information and few supports as they faced the daunting task
of raising a blind child. But thanks to the caring and giving
spirit of the children they raisedsuch as Gary Wunder, President
of the NFB of Missouriparents today to not have to "re-invent the
wheel." Here is what Gary Wunder has to say about that:
A child arrives at 1:30 in the afternoon on a March day which should have been like any other day for the man and wife beginning their family. The proud day should have been June; the fear and pain should have been pleasure. The boy was supposed to have been named John, a two-generation tradition which should have been three; but the child would likely die and the risk was just too great. Two pounds at birth and dropping. Baptize the child, give him a name, do whatever one can do when all seems hopeless. These were the thoughts my parents must have had, and these were the actions they took. What was it they should ask of their God? After four months in the hospital the child comes home. He isn't very responsive, but then he is so very little.
Thank God, he's alive!
Several months pass without noticeable improvement. Conversations with doctors reveal that there isn't much known about infants kept alive through such extraordinary means. Excessive sleep is diagnosed as a significant indicator of retardation. Why did the child not look in the direction of a speaker? A visit with an eye doctor concluded in short order that I was totally blind. My mother was so devastated that my grandmother had to take me home from the doctor's office. My mother was overwhelmed by guilt. Had it been the basketball playing the day before my birth, or was there some truth to what people had been saying about the sins of the parents being paid for by the children? These were her thoughts. How she resolved them I do not know, but I do know that they never kept her from giving me all the love and affection that a child could need.
When I was a youngster my parents knew nothing about the National Federation of the Blind or any service providers in the area. They did know about one nursery school and later about a school for children with special needs where I received my first five years of education. What I find so sad about all of this is how much worry they could have avoided if they had been able to see competent, capable people such as we have in the many local and national meetings of the National Federation of the Blind.
Everything my parents did for me was done without the knowledge that there were successful men and women to whom they could turn for advice and consultation. My parents were pioneers. What they tried might have been tested and proven a hundred times over, but they had no one to tell them, no one to comfort them, no one to give them support and encouragement. I too shared the same problem. I knew few blind people, and the ones I did know were all my age. They had no better grasp of what it would take to compete with the sighted than did I. We were all told that we were exceptionable for blind people, but we were never told how we compared to the sighted.
I think my parents deserve a great deal of credit for the way they raised me. I was allowed to do everything children my age were allowed to do. If the activity I wanted to do was age appropriate, I was expected to use my best judgment in determining whether and to what extent I wanted to participate. There were times in my childhood when I did not appreciate just how strong my parents had to be to give me equal opportunity. When I was seven I wanted to ride a bicycle. One of my grandfathers thought the idea was so ridiculous that he called my father stupid, right in front of me and my brothers. My grandfather said that when he got the first opportunity he would "burn that damned bicycle and put an end to the foolishness that would end my life." Although my grandfather was more outspoken than some, my parents faced strong opposition from most of our friends and neighbors anytime I wanted to do something new.
When my father bought me a horse the little town in which I lived started buzzing about how someone would soon find me hung in a tree because I wouldn't know when to duck my head as the horse galloped merrily along. My town finally got used to the horse but when my father bought motorcycles for my brothers, and I insisted on having one too, some public-spirited citizens started taking up a collection to buy me a burial plot. Though my last statement is a bit exaggerated I think it is obvious that my parents had to be courageous not to bow to the pressure of the community. Had I been seriously hurt through any of the accidents that befall children, my parents would not have been regarded as unfortunate victims, but as negligent caretakers. It is only after the fact that my parents now hear praises about how sound their judgments were and how admirable it is that they allowed their child to have the experiences that would lead to his leading an independent and productive life. I suppose that it's obvious that my parents always thought of me as a reasonably capable child. Certainly they always encouraged me by saying that I could do anything that I really wanted to do.
These words so often repeated and hailed in the verses of Psalms could not erase the fear, however, that there might not be a place in the world for a son who was blind. Secretly I would lie awake at night and wonder if I would ever be able to do anything well enough to justify a reasonable wage. I relied on my parents for strength, believing that they knew more about the world than I--that their declarations to the world, about how capable I really was meant that there would indeed be a place for me.
When I was fifteen my parents bought me a guitar. I quickly learned some chords, picked out a few melodies, and generally had a great time pickin' and grinnin'. After a time I began to be embarrassed by my father who wanted me to play songs with perfection and had me sing songs that were far beyond my limited voice range. Each night I could expect the usual question, "Did you practice your guitar today?" Sometimes the answer was yes, mostly it was no. One night when we were out fishing my father asked how much I practiced in the past month, and I said I hadn't. He became very serious, somehow angry and a bit hurt. Finally he said, "Boy, I never wanted to tell you what to do so you tell me. If you don't learn to sing and play that guitar, what kind of a future do you think you will have? What is it that blind people do?" I had no answer for my father. I had nothing but fear. What a blind man could do I didn't know, but I knew that I was able to evaluate my own musical talent against people that made real money. I didn't stand a chance. To love music is one thing, but to make music one's livelihood is quite another.
What I needed then was something which is available to everyone today who sits in this room. I needed to see competent, capable people who made their living doing normal, everyday jobs and earning a good honest dollar. I needed to see people who were like the average men and women I knew in my little town. I needed to know that there were careers open to me that did not demand that I be a genius or an artist or a possessor of some special talent that the world could honor and admire. I needed to see blind disk jockeys, blind teachers, blind furniture makers, blind lawyers, blind industrial workers, blind typists, blind mathematicians and even blind computer programmers, which now happens to be where I found my place in the world.
At sixteen I joined the National Federation of the Blind. I didn't do it because I thought it would change my life or broaden my horizons. I did it because some friends asked me to, and it only cost three bucks. They would pick me up for this silly meeting where they would serve coffee and doughnuts. Television was bad on Friday anyway, so why not?
What I've gained from the National Federation of the Blind is a dignity and self-respect which could not come from associations with sighted people alone. The National Federation of the Blind gave me a standard of excellence to achieve, and it would not accept anything less than my best if I wanted its praise and its respect. It did not accept my blindness as a valid excuse for all the things I didn't want to do. The NFB made it clear that there were opportunities available that I had never considered before. My ability to take advantage of them rested with my willingness to take responsibility for myself, and to work for the good of all blind people in solving problems none of us can hope to solve alone.
I urge all of you who are parents of blind children to become active in our cause. Let your blind children learn firsthand that blindness need not limit their ambitions to be what they want to be. Do not force yourself and them constantly to reinvent the wheel. Turn to people who can help you avoid some of the mistakes which haunt those of us who have already grown up. Mistakes such as not getting a good education, not getting rehabilitation training, not being able to travel independently. Join with a group that believes that your children are our children. Join with people who are determined to see that your children have even greater opportunities than we had when we were growing up. Join with people who will fight for you when you need an advocate, and who will rejoice with you when you need to share in the joy that comes from seeing a child mature into a happy self-confident, self-sufficient adult. These are things we offer you in the National Federation of the Blind. Help us change what it means to be blind. Not only for the children of yesterday and today but also for the children that will come tomorrow.