[PHOTO/CAPTION: Deborah Kent Stein]
More to Life Than Meets the Eye
by Deborah Kent Stein
From the Editor: Some months ago a book was published including a chapter written by novelist and First Vice President of the NFB of Illinois Debbie Kent Stein. Several newspaper editors in England contacted her to request permission to print versions of that chapter as articles in their publications. The most accurate of these appeared in the March 27, 1999, edition of the London Times. Debbie deals clearly and honestly with one of the most difficult issues many blind people thinking about parenthood have to face. This is what she says:
When I was only a few weeks old, my mother realized that I could not see. For the next eight months she and my father went from doctor to doctor searching for answers. At last a leading eye specialist confirmed everything they had already heard by then--my blindness was complete, irreversible, and of unknown origin. He also gave them some sound advice: they should help me lead the fullest life possible.
Fortunately for me this prescription matched their best instincts. As I was growing up, people called my parents "wonderful." They were praised for raising me "like a normal child." As far as I could tell, my parents were like most of the others in our neighborhood--sometimes wonderful and sometimes annoying. And from my point of view I was not like a normal child--I was normal. From the beginning I learnt to deal with the world as a blind person. I did not long for sight any more than I yearned for a pair of wings. Blindness presented occasional complications, but it seldom kept me from anything I wanted to do.
For me blindness was part of the background music that accompanied my life. I had been hearing it since I was born and paid it little attention. But others had a way of cranking up the volume. Their discomfort, doubts, and concerns often put blindness at the top of the program.
Since one of my younger brothers is also blind, it seemed more than likely that my unknown eye condition had a genetic basis. I never thought much about it until my husband Dick and I began to talk about having a child. Certainly genetics were not our primary concern. We married late (I was thirty-one, Dick forty-two) and were used to living unencumbered. Since we both worked as freelance writers, our income was erratic. We had to think about how we could shape our lives to make room for a child, whatever child that might be.
Somehow blindness crept into our discussions. I do not remember which of us brought up the topic first. But once it emerged, it had to be addressed. How would I feel if I passed my blindness to our son or daughter? What would it mean to Dick and to our extended families? What would it be like for us to raise a blind child together? I premised my life on the conviction that blindness was a neutral characteristic. It created some inconveniences such as not being able to read print or drive a car. But in the long run I believed that my life could not have turned out any better if I had been fully sighted. If my child were blind, I would try to ensure that it had every chance to become a self-fulfilled, contributing member of society. Dick agreed with me. We were deciding whether or not to have a child. Its visual acuity was hardly the point.
Yet if we truly believed our own words, why were we discussing blindness at all? I sensed that Dick was trying hard to say the right thing, even to believe it in his heart. But he was more troubled than he wished me to know. Once, when I asked him how he would feel if he learned that our child was blind, he replied, "I'd be devastated at first, but I'd get over it."
In retrospect I can appreciate the honesty of his words. Yet he had not given the answer I had wanted to hear. I was blind, and I was the woman he had chosen to marry, to spend his life with for better or worse. He accepted my blindness naturally and comfortably, as a piece of who I was. If he could accept blindness in me, why would it be so devastating to him if our child were blind as well? "You know why," was all he could tell me. "You have got to understand."
What I understood was that Dick was the product of a society that views blindness, and all disability, as fundamentally undesirable. All his life he had been assailed by images of blind people who were helpless, useless, and unattractive--misfits in a sight-oriented world. I had managed to live down those images.
Dick had discovered that I had something of value to offer. But I had failed to convince him that it is really okay to be blind. I wanted our child to be welcomed without reservation. I wanted Dick to greet its birth with joy. I did not know if I could bear his devastation if our baby turned out to be blind like me. In order to make a decision, we had to gather all the facts. Before we carried the discussion any further, we needed to find someone who could answer some critical questions.
On a sunny morning in October Dick and I set out to visit a specialist who had been recommended to us. Perhaps I would learn at last why I am blind. As we packed the car, Dick commented, "It's going to be a long, nervous day." I could not have agreed with him more.
I expected a battery of tests. But the doctor dilated my pupils, gazed into my eyes, and announced, "I'll tell you what you have, and I'm 100 percent certain. You've got Leber's congenital amaurosis." Leber's a genetic condition, he explained, autosomal recessive in nature. Both of my parents carried the recessive gene, and each of their children had a one-in-four chance of inheriting the eye condition. What were my chances of passing Leber's on to my own children? I asked. The doctor explained that I would inevitably give one recessive gene for Leber's to my child. But unless my partner happened to carry the same recessive gene, there was no possibility that our child would be affected. The chances that Dick would prove to be another carrier were slight.
The discussion could have ended with that simple exchange of information. But the doctor had more to say: "You have a good life, don't you? If you have a child with Leber's, it can have a good life, too. Go home and have a dozen kids if you want to." Even from a complete stranger, those were wonderful words.
The trip to the specialist cemented our decision to have a child. Days after our daughter Janna was born, my mother and father flew out to visit us. Mom helped with the cooking and house-cleaning while I marveled at the extraordinary new being who had entered our lives. I was too happy and excited to feel exhaustion. I was not worried about Janna's vision or anything else.
It was almost time for my parents to go home when Dick said to my mother, "You've raised two blind children. What do you think--can this kid see or not?" My mother said she really couldn't be sure. Janna was hardly a week old: it was too soon to tell. The day after my parents left, Dick found the answer on his own. As Janna lay in his arms, awake and alert, he moved his hand back and forth above her face. Distinctly he saw her turn her head to track the motion. She saw his hand. She followed it with her eyes.
"She can see!" Dick exulted. He rushed to the telephone and called my parents with the news. I listened quietly to their celebrations. I do not know if anyone noticed that I had very little to say.
How do I feel about the fact that Janna can see? I am glad that her world is enriched by color as well as texture and sound. And I am grateful that she will never be dismissed as incompetent and unworthy simply because she is blind. But I know her vision will not spare her from heartbreak; she will still meet disappointment, rejection, and self-doubt as all of us must.
For me blindness will always be a neutral trait, neither to be prized nor shunned. Very few people, not even those dearest to me, share this conviction. Sometimes I feel a sense of failure when I run into jarring reminders that I have not changed their perspective.
However, in recent years a new insight has gradually come to me. Yes, my own loved ones hold the unshakable belief that blindness is, and always will be, a problem. Nevertheless, these same people have made me welcome. Though they dread blindness as a fate to be avoided at almost any cost, they give me their trust and respect. I am not sure how they live amid these contradictions. But I recognize that people can and do reach out, past centuries of prejudice and fear, to forge bonds of love. It is a truth to marvel at, a cause for hope, and perhaps some small rejoicing.