Somewhere a Mockingbird
When I was only a few weeks old my mother realized that I couldn't see. For the next eight months she and my father went from doctor to doctor searching for answers. At last their quest led them to one of the leading eye specialists in New York City. He confirmed everything they had already heard by that time—my blindness was complete, irreversible, and of unknown origin. He also gave them some sound advice. They should stop taking me to doctors, give up looking for a cure. Instead they should help me lead the fullest life possible. Fortunately for me, his 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 my neighborhood—sometimes wonderful and sometimes annoying. From my point of view I wasn't LIKE a normal child, I WAS normal. From the beginning I learned to deal with the world as a blind person. I didn't 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. Teachers offered to lighten my assignments; Scout leaders discouraged me from going on field trips; boys shied away from asking me on dates. The message was clear. Because I was blind these people saw me as a liability—inadequate, incompetent, and too strange to be socially acceptable.
I knew that my parents ached for me when these situations arose. It hurt them to see me being prejudged and rejected. Yet they found it hard to do battle on my behalf. Though they shared my sense of injury, they also identified with the non-disabled people who sought to exclude me. "You have to understand how other people see things," my parents told me. "They're trying their best. You need to be patient with them." I struggled to show the doubters and detractors that they were wrong. Much of the time I felt that I was fighting alone.
Since one of my 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 was not our primary concern. We married late (I was 31, Dick 42) 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.
But somehow blindness crept into our discussions. I don't 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. Occasionally it locked me into conflicts with others over what I could and could not do. 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 it every chance to become a self-fulfilled, contributing member of society. Dick said he agreed with me completely. We were deciding whether to have a child. Its visual acuity was hardly the point.
Yet if we 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." It was not the answer I wanted to hear.
I was blind and I was the woman Dick chose to marry, to spend his life with for better or for worse. I was his partner in all our endeavors. 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 devastating to him, even for a moment, if our child were blind as well? "You know why," was all he could tell me. "You've got to understand."
What I understood was that Dick, like my parents, 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 that image. 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.
Our discussions showed me a painful truth. No matter how close we grew, how much of our lives we shared, blindness would never be a neutral trait for him. 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.
It was too painful to explore the implications any further. Instead I plunged into a search for information. After all, we didn't even know the real cause of my blindness. We couldn't make a decision until we gathered the facts. Surely the field of ophthalmology had learned something new over the past three decades. A series of phone calls led me to a specialist at New York University Medical Center. I was assured that if anyone could answer my questions, he was the man.
On a sunny morning in October, Dick and I set out for New York to learn why I am blind. We lived in a small town in central Pennsylvania at the time, and Dick wasn't used to driving in the city. He dreaded the horn-blaring, bumper-to-bumper traffic and the desperate search for a parking space. All of his energy focused on delivering us to our destination. As we packed the car he commented, "It's going to be a long, nervous day." I
couldn't have agreed with him more.
Parking on the streets of Manhattan was as difficult as Dick had feared. Finally, we squeezed into a spot a dozen blocks from the hospital and set out on foot. The city engulfed us with its fumes and bustle and grinding noise. We didn't try to talk above the traffic. There was nothing new to say.
We had walked several blocks when I was dimly aware of a strange sound. It was remarkably like the song of a bird—the clear, warbling notes ringing out against the concrete walls around us. At first I assumed it was a recording turned full blast or some mechanical toy worked by a child. But as we drew nearer Dick remarked, "There's a crowd of people standing by a tree. They're all looking at something. Oh hey, there's a bird up there!"
I've been an avid birder most of my life, and the song was unmistakable. It was a mockingbird. The mockingbird thrives in fields and gardens. It gathers scraps and snippets from the songs of other birds and braids them into a pattern all its own. The mockingbird sings exuberantly from April to June, but by late summer it usually falls silent. Yet this one poured forth its song on East 32nd Street in mid October, out of place and out of season. It seemed utterly fearless and confident, staking a claim for itself in that inhospitable city landscape. It had something to say and it was determined to be heard.
New Yorkers are used to almost anything, but the extraordinary song of this tiny creature brought them to a standstill. For a little while Dick and I paused too. We stood on the pavement, listening and marveling. Then we pushed through the revolving door and into the antiseptic halls of the medical center.
I expected a battery of tests, maybe a referral to yet another expert. 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 is 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 were slight that Dick would prove to be another carrier.
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?" he asked. "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 total stranger those were wonderful words. They affirmed that I was not a liability to the world. I was a worthwhile human being with a variety of traits to pass on to future generations. To this New York doctor my Leber's genes were not a curse. They need not be extinguished any more than my genes for dark-brown hair. I was valued for who I was. My child, sighted or blind, could be valued in the same way. I floated out of the doctor's office and found Dick in the packed waiting room.
"Hey, guess what!" I cried in triumph. "I've got Leber's congenital amaurosis!"
The trip to New York cemented our decision to have a child. We left the city with a new certainty, a sense that we were ready for whatever came our way. Yet I knew Dick was comforted by the fact that Leber's is relatively rare and that probably he did not carry the recessive gene. I wished that he didn't need that comfort.
Within the year we were parents-to-be. We awaited the birth of our child with all the eagerness, wonder, and anxiety common to expectant parents. We seldom mentioned the possibility that our baby might be blind. Leber's congenital amaurosis seemed safely remote, a flash of lightning that wouldn't strike again. But it could reappear, I knew. I lived with the small unspoken fear that, if our child were blind, Dick would feel betrayed—by medical science, by fate, by me.
Dick had his doubts about coaching me through labor and viewing the birth. To support us both, his sister came along to our Lamaze classes. She stayed with us in the birthing room to help out in case Dick should faint dead away. But nobody fainted. When our daughter Janna arrived we greeted her with greater joy than I could have imagined. Her welcome was boundless and wholly unreserved.
My parents flew out to visit us when we brought Janna home from the hospital. Mom helped with the cooking and housecleaning and insisted that I get as much rest as I could. I spent every conscious moment nursing, rocking, diapering, and marveling at the extraordinary new being who had entered our lives. I was too happy and excited to feel exhaustion.
I wasn't worried about Janna's vision or anything else. But one day my mother confided that my father had told her, "We've still got to find out if the baby's blind." I was stunned by his concern and by her unquestioning acceptance that it was justified. My parents raised all three of their children, including my blind brother and me, with sensitivity and unwavering love. In all of us they tried to nurture confidence, ambition, and self-respect. Yet they felt apprehensive about the prospect that their granddaughter might also be blind. Blindness had never become neutral for them, any more than it had for Dick.
It was almost time for Mom and Dad 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 barely 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 phone and called my parents with the news. I listened quietly to their celebrations. I don't 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. When she snaps a picture with her new camera or poses before the mirror in her favorite dress I draw pleasure from her delight. As her mother, I want her to have every advantage, and I know that some aspects of her life are easier because she has sight. She can play video games with her friends; she can thumb through magazines and note the latest fashions. All too soon now she will be learning to drive a car.
Beyond that, I am glad Janna will never be dismissed as incompetent and unworthy simply because she is blind. I am grateful that she will not face the discrimination that threads its way through my life and the lives of most people with disabilities. 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.
I will always believe that blindness is a neutral trait, neither to be prized nor shunned. Very few people, not even those dearest to me, share that conviction. My husband, my parents, and so many others who are central to my life cannot fully relinquish their negative assumptions. I feel that I have failed when I run into jarring reminders that I have not changed their perspective. In those crushing moments I fear that I am not truly accepted after all.
But in recent years a new insight has gradually come to me. Yes, my own loved ones hold the unshakeable 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 don't understand how they live without discomfort amid such 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.
Sometimes Dick reminisces about the day Janna turned her head to watch his moving fingers. In his voice I hear an echo of the excitement and relief that were so vivid for him on that long-ago morning. Each time I hear the story I feel a twinge of the old pain, and for a few moments I am very much alone again.
But I have my own favorite stories to recall. I remember our long, nervous day in New York, and the doctor who told me to go home and have a dozen kids. And somehow I have never forgotten the mockingbird that sang so boldly in a place where no one thought it belonged, making a crowd of busy people stand still to listen.
© Deborah Kent