Future Reflections Summer 1992, Vol. 11 No. 3
"MOM, WHAT DOES BLIND MEAN?"
by Pauletta Feldman
From the Editor : There are a few subjects in our society which even the most sensitive and caring parent--or maybe I should say especially the most sensitive and caring parent--finds difficult to discuss with his/her children. It isn't a long list: sex, death, drugs, AIDS, racial and religious prejudices are some that come to my mind--with sex and death probably the most common. Just the thought of trying to explain or answer a question about sex or death to an inquisitive four-year-old can leave us with a pounding heart and sweaty palms. No doubt the reasons are many and varied. Sometimes the difficulty may arise out of ambivalent feelings: we can't explain our beliefs to others--especially a child--because we are not really sure what we believe. Often, however, our awkwardness stems from a lack of experience and modeling. Maybe our own parents never discussed such topics with us, and though we feel knowledgeable and secure in our beliefs, we simply don't know how to discuss them with children. Fortunately, there are many places parents can turn to for help. Parenting classes, individual counseling, religious faith, and self-help books are just some of the avenues through which parents can get information and guidance.
But what do you do if you have a blind child? Who is going to tell you what to say when your child asks, "Mom, what does blind mean?" Or, "Dad, am I blind?"
Pauletta Feldman gave that question a great deal of thought. I do not know all of the influences which shaped Paulette and her thinking about blindness, but I do know some of them. Some years ago she and her husband attended, by special invitation, a weekend NFB-sponsored leadership seminar for parents of blind children. We talked a great deal about blindness at that seminar--what it was, what it wasn't, what we thought about it, and what we felt about it. A number of the participants and leaders of the seminar were themselves blind. Parents talked with, laughed with, argued with, worked with, cried with, and learned to respect their blind colleagues at the seminar. Since then, Pauletta has been a regular reader of Future Reflections and the Braille Monitor, and some of her articles written for a local parent group newsletter have appeared in Future Reflections.
As I read Pauletta's article about her and her son's discoveries about blindness, I thought of our family's journey. My son is now 14, so we have come a little further down that road. Chaz also has partial vision, which has added a slightly different twist to the experience now and then. Our strategies, Pauletta's and mine, were sometimes the same, sometimes different. I think I feel less sadness, perhaps because I have been surrounded for so many more years by normal, successful blind friends and colleagues. But our goal, I believe, is the same: to raise a child who truly believes that it is respectable to be blind.
Independence and success are important, but not enough. I can't count the times have I heard blind adults say: "My parents were great about letting me do the same things other kids were doing when I was growing up. But the one thing they never did was talk about blindness. It was only when I grew up and met the National Federation of the Blind that I learned to feel good about my blindness."
Fortunately, blind children today do not have to grow up before they can encounter the positive philosophy and mutual support of the National Federation of the Blind; it is here for them--through you--right now.
Here is Pauletta's story as reprinted from the VIP News, September/October 1991, issue.
It wasn't until my son, Jamie, was five years old that he finally asked me that question. We'd used the word blind in conversation, and he'd certainly heard it from other people. But we hadn't really discussed blindness or its implications with Jamie. Maybe we were just "chicken" and putting off the inevitable. However, we had decided that we would handle discussions of blindness with Jamie as we had handled discussions of sex with our older children: when they started asking questions, we felt they were ready to be told the facts.
So that day at naptime when Jamie asked about blindness, I sucked in a big breath and summoned my courage. "Blind means that you can't see with your eyes," I said. "I can see things with my eyes. I can see the trees and the birds and all of the other things I tell you about. But you see things in a different way than with your eyes. You use your smart fingers and your smart ears." He was quite satisfied with that answer and didn't pursue the subject further that day. However in the days to come, he would ask questions again. The kind of questions he asked led me to believe that, in his mind, he wasn't the one that was different, I was! In a way, it was like his first notion of differences among people was of how they were different from him, rather than how he was different from them. I liked that--I liked how self-confident and self-loving he was.
For awhile, Jamie seemed to think that everybody we knew was blind and that there were just a few people who could see. He began asking about person after person in our family and among our friends to sort out who was blind and who was not. Gradually he came to realize that he knew more people who could see than who could not. I'm so thankful that we knew other blind children and adults so that as this realization dawned on him, he did not feel isolated or alone. The blind people that we knew were really neat people. They were friends and fun to be with, just like our other friends. They were people that Jamie really liked, and he could feel good about having something in common with them.
Jamie began school and loved learning to read Braille. He became very interested in how sighted people read. Then he began asking of everyone we knew whether they read with their fingers or with their eyes. During the past two years since facing that first question, there have been many incidents that have brought both hidden tears and silent laughter as we have gone through Jamie's formation of opinions about blindness. There was the day that he came home from school very indignant because a teacher had mentioned that he couldn't see. He said. "I told her that I can too see! I can see the light!" Another day, as he and his brother sat at the kitchen table doing homework, he asked accusingly, "Is Don doing his homework with his eyes?" And he laid his face on his Brailled worksheet and said, "Then I'm doing my homework with my eyes too!" He decided that someday he was going to go to school with his brother and then he would be able to read print because they didn't teach Braille there.
He went through a phase of picking up some lingo and developing an interest in degree of blindness. He'd ask of fellow visually impaired students whether they were "totals" or "partials" (and of course, he wasn't a "total" because he could see some light). He also came up with some clever excuses. When reminded for the umpteenth time not to poke his eyes, his response to me was very patronizing, as if educating a child, "Mom, blind people just like to do that!" Then there was the night near Christmas when we went driving around to see the lights in the neighborhood. I tried to describe them to Jamie, but he finally said with some boredom, "I can't see the lights, Mom. But don't blame me! I'm blind"
As Jamie has gotten older, some of his responses to his blindness have begun to be tinged with sadness. One day we read a little book called, "Corky the Blind Seal," about a seal in a zoo who lost his sight. The next day as he got off the school bus, he said, "I want to be a bus driver when I grow up!" My heart ached, and I just said, "I bet driving a school bus is fun, too." But when we got in the house, he confessed. "I know I can't be a bus driver. Blind people can't drive, and I'm blind. I'm glad I'm blind, Mom. I just wish I could be blind like Corky the seal was blind, because he got to see first." He asked if it was nice to be able to see, and I said that it was. We talked about how he could see what I see using his other senses, like when we went to the ocean he could feel the water, taste its saltiness, hear its waves, and smell it, too. He liked knowing that there were things that even people who were sighted actually couldn't see, like the wind--that we had to hear it and feel it to know it was there just like he did.
I've always wanted Jamie to feel good about himself. I haven't wanted him to think that there is anything wrong with the way he is. I haven't been able to bring myself to tell Jamie that, according to some people, there is something wrong with being blind. Maybe I'll regret this someday, but I figure in time he'll learn. I hope he will come to me with his questions then and that I'll be able to answer them. To me, blindness is a difference, a source of sadness sometimes and inconvenience at others, but there's nothing wrong with it.
Life is a journey of self-discovery. I want Jamie's journey to bring self-love with the discovery of his many potentials and capabilities as well as his personal limitations. We all have to face certain limitations. It's how we cope with them that really matters. So far, Jamie has always managed to find a silver lining for every one of his clouds, to compensate for each limitation with a special strength. Why just last week he said, "Mom, aren't you glad I'm blind and have such smart fingers and can read Braille? You can't read Braille with your fingers! You have to use your eyes."