Learning the Hard Way

Learning the Hard Way

Future Reflections Special Issue on Low Vision IDENTITY
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Learning the Hard Way
by Carla McQuillan
From the Editor: Carla McQuillan is executive director of Main Street Montessori in Springfield, Oregon. She is president of the NFB of Oregon and has served on the board of directors of the National Federation of the Blind.
When I was eight years old, my older brother began to complain that he had trouble seeing. The doctors were unable to find the cause, so they determined that it must be psychological. My brother wore a pair of clear glasses for a while, spent a year on a psychiatrist's couch, and was no end of frustration and concern to my parents. He continued to insist that he could not see the chalkboard, read his textbooks, or do his schoolwork. The psychiatrist and the physicians continued to collect their fees.
Finally, my parents took my brother to a low vision specialist who diagnosed a rare recessive genetic disorder called Stargardt's disease. Much like macular degeneration, which primarily affects senior citizens, Stargardt's results in the loss of central vision. It leads to the inability to read print and detect detail, though it does not significantly affect mobility.
My brother was assigned a teacher of blind students who came out to our house to meet with him and with our parents. I will never forget the day that teacher came to visit. He said that he, too, was visually impaired. He did not have a cane, nor did he read Braille, and he was obviously in need of both. I remember feeling sorry for my brother. This teacher was the only blind person we had ever met. I thought he was pitiful, and I believed my brother would end up just like him.
There was no discussion of Braille or cane travel--and why would there be? The teacher didn't use those tools, so why would he offer them to my brother?
Instead of Braille, my brother got heavy large print books that were twice the size of the regular texts. The kids at school teased him and called him stupid because he had those huge books.
Shortly thereafter, I had a sudden loss of vision myself. It didn't take long for my parents to determine that I, too, had Stargardt's disease. But I would have no part of that pitiful image of blindness that the teacher modeled and which my brother soon adopted. I spent a tremendous amount of energy and concentration trying to "look sighted." I thought I was being so clever!
Fortunately, I was sharp enough to do well in school. I relied heavily on my good memory. It was really the only way I could retrieve information.
My brother, on the other hand, constantly reminded people of his blindness. He used his disability as an excuse to get out of work or to get someone to do things for him. Not me! My blindness was a subject we did not discuss in my house. I didn't want to think about it, and I believe my parents were just as happy to ignore it. I wish we had come into contact with the National Federation of the Blind back then. Our story could have been very different if someone had told me and my family that it is respectable to be blind!
The more determined I was to be "normal," the worse my attitudes about blindness became. My brother didn't improve things, as he seemed to enjoy being dependent and helpless. He jumped at every opportunity to receive special treatment. He came to expect that people would wait on him and cater to his every need.
As I got older, it grew more difficult for me to pretend that I could see like everyone else. In my neighborhood, every sixteen-year-old got a driver's license, and most had their own cars. I remember telling my classmates that I didn't get my license because I had been in a car accident and was afraid to drive. Looking back, my invention seems absurd and a little embarrassing. I just didn't want anyone to know I was blind.
The saddest thing about all of this was all the opportunities I missed. I dearly wanted to perform in school plays, but the drama teacher had cold reading auditions. I'm sure she would have given me the script in advance if I had told her why I needed it, but I couldn't bring myself to do that. I was in choir, but I never got a solo part because I couldn't see the music or read the lyrics.
I chose to go away to college. Maybe, I thought, I could start over with a new peer group. I ended up dropping out because the reading load was too great. I lacked the skills to keep up and the knowledge of alternative methods of accessing my textbooks.
Eventually it became clear that I would never have a decent career without a college degree. I went back to school at the University of Illinois in Urbana. By that time I was twenty-six years old, married, and had a small child. One thing I needed to pursue an education was the money to pay for it. If I admitted I was blind, I could have gotten funding from my state's vocational rehabilitation agency.
The reading load was no lighter this time around, and I became frustrated. Finally I sought help from my school's Disabled Students Services office, asking to learn to read Braille. The answer was no. Braille was too difficult, I was told, and I would never use it. I was introduced to the CCTV and informed that reading one or two letters at a time on the eighteen-inch screen was better than reading Braille. I went away in tears.
The people in Disabled Students Services did help me, though, more than they could have imagined. They gave me an application for a scholarship from the National Federation of the Blind of Illinois. "Take the money," they advised me, "but for the love of Pete, don't become a part of that organization!"
In 1987 I won an NFB of Illinois scholarship, and I attended the Illinois state convention. That convention changed my life. For the first time since I found out I was blind, I gained a positive outlook on my future. The mentors and friends I have known in the Federation have provided me with a whole new perspective. I only hope I can help others who are struggling, as so many people have helped me.
If you are the parent of a child with low vision, there is no better organization than the NFB, no matter what anyone may tell you. Don't believe it when people say that Braille is not necessary or tell you that technology will solve all your child's problems. Don't buy into the idea that "He really isn't that blind." Take it from someone who missed a lot of opportunities, opportunities that would have been mine if only I had been in touch with the right people. Your child should be encouraged to dream big and to work hard to make those dreams come true. The Federation can help you make that happen.

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