The Connie Davis Story As Told To Catherine Horn Randall
(Editor's Note: This article, under the title "Growing Up Albino", was orginally printed in the March, 1986 Months News, the newsletter of the National Federation of the Blind of Illinois, and then later reprinted in the NFB's monthly publication, the Braille Monitor.)
In layman's terms, albinism is a lack of pigmentation in the hair, skin, and eyes. It is inherited and is carried by a recessive gene. Albinism can apparently skip generations within a family. We cannot trace albinism back far enough in my family to find its source.
Albinism affects the eye's ability to magnify images. An albino needs artificial magnification aids to read small print and to see street signs at a distance. I use a hand-held monocular to see stop lights and to read street signs. In addition to reading glasses, I always carry sunglasses with me. An albino's eyes are very sensitive to light. I need to wear dark glasses on sunny days and even on partly cloudy days. The glare from late afternoon sun and from snow can literally blind me.
I was born in the early 1950's. According to my mother, my eyes raced back and forth and didn't seem to focus soon after I was born. This was my parents' first clue that something was wrong with my eyes. Nothing had been said to them about my eyes before they took me home from the hospital. My mother learned about my albinism and blindness by accident. During my six week check-up the doctor momentarily left the room and she read the words "albino blind" on my record. My poor mother was distraught and in shock, to put it mildly.
In the early 1950's not much was known about blindness due to albinism. My parents took me to Children's Research Hospital in Chicago and to the Karl Clinic in Champaign, Illinois. I believe doctors at the Karl Clinic advised my parents to have me fitted with my first pair of glasses when I was two years old. That was very young for a child to be wearing glasses in those days. I tend to remember things in visual images, so my first memories are of events that occurred after I began wearing glasses and could focus my eyes and thus be able to see for the first time.
My hand-eye coordination isn't good, and I noticed growing up that it took me longer to develop gross and especially fine motor skills than it did my younger brother, who has normal sight. I loved to play with paper dolls, but I could not cut them out very well. I didn't learn to ride a two-wheel bicycle until I was at least six. I don't remember if my coordination was the problem, or if the delay was really caused by my parents' fears that I would ride and get hurt, which, of course, I did like most kids. Unlike most kids, I wasn't allowed to ride in the street until I was in junior high or high school. I really didn't have the confidence to cross busy streets alone until I was out of college.
I was legally blind, but I wasn't trained in the two most essential skills of blindness; namely, the ability to use a long white cane to cross streets safely, and the ability to read and write Braille.
The terms "albino" and "blind" were not discussed in my home. I was not legally blind, according to my family; I was visually handicapped. I hate the term "visually handicapped," with all its negative connotations; "legally blind" says it like it is.
I was pretty well accepted by the kids at school and in our neighborhood. They all knew I couldn't see very well, and they looked out for me. The kids did tease me and call me George Washington because of my white hair. I was teased more about being albino than I might have been otherwise because I adopted my parents' defensive attitude about it.
I used large print books until fourth grade. I was then given a handheld magnifying glass, and that was how I made it all the way through high school and college. I didn't know large type typewriters were available either. I just got by. I also hadn't heard of the Library of Congress Talking Book Program until Iwas inmy late twenties.
I had my first male teacher in sixth grade, and he began to turn my negative attitude about myself around into a more positive one. He adored me and called me "Cotton." He told me, until I finally believed it, that there is no such word as "can't."
My parents knew that Braille existed, but they wouldn't admit to themselves that they had a blind daughter. My mother still hates the fact that I am learning Braille.
I finally decided to take cane travel lessons at the Catholic Guild for the Blind in Chicago. I use an NFB fiberglass white cane, and I don't worry about missing curbs and steps anymore. I am currently in my third year teaching French to students from first through eighth grade at the Hardy Preparatory School for Boys in Chicago. My students know I am the boss, and they seem to like it that way. My kids don't worry about my blindness. All they are concerned about is learning French.
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