Sexuality and Disability, Vol. 20, No. 1, Spring 2002 ( 2002) Beyond Expectations: Being Blind and Becoming a Mother Deborah Kent1 In this article, the author, who is blind, reflects on her experiences with pregnancy, birthing, and raising a child. She discusses society’s negative attitudes about blind women and motherhood, and the way these attitudes become obstacles in a blind woman’s life. The importance of networking between blind parents is emphasized. KEY WORDS: blindness; motherhood; networking. I loved being pregnant. Unlike those Victorian ladies who went into confinement, disappearing behind whispers and closed doors the moment their “delicate condition” became apparent, I wanted the world to take notice of my bulging belly. I seized every opportunity to walk the streets, to ride the city buses, to present myself in public. I reveled in the anticipation of motherhood, and somewhere too, I felt an exhilarating sense of defiance. No one ever told me pointblank that I couldn’t have children. Nobody had to say it in words. From childhood on, I heard the message in a subtext of denials and omissions. Nearly all of the women I knew were mothers, but not one of those mothers was blind. It was always a sighted mom who pushed the stroller, ran the Scout troop, or called to her kids over the backyard fences. Throngs of sighted mothers filled the auditorium for music programs at school. I knew only two adult blind women, and both of them were childless. In my young mind, this sample translated to a global truth. Sighted women were mothers; blind women were not. When I turned twelve I was eager to start babysitting along with my sighted friends. But none of the neighbors asked me to stay with their children. One woman from across the street, a busy mother of four, called my house 1Address correspondence to: Deborah Kent, 5817 N. Nina Avenue, Chicago, IL 60631. 81 0146-1044/02/0300-0081/0 2002 Human Sciences Press, Inc. 82 Kent regularly to hunt down my friends. “Is Sue there?” she would inquire. “If you talk to her, tell her I’d like her to sit Saturday night.” It wasn’t fair, I wept to my parents. I was just as responsible as Sue or anyone else my age. I liked little kids, and I was sure I’d do a good job taking care of them. Like me, my parents had never known a blind person who took care of children. And, though they had faith in my abilities, they also understood the world we lived in. When I pleaded with them about babysitting, their response was unequivocal. I had to accept, they told me, that few people would feel comfortable leaving me in charge of their children. People didn’t know how capable I was, and they weren’t about to take chances. It wasn’t fair, but I had to be realistic. My friends could see, and they were asked to babysit. I was not asked, because I was blind. When I entered my teens the messages about my motherhood potential took on a sharper edge. Now my friends made their first tentative steps toward courtship and marriage. Suddenly everyone was scrambling to conform to some mysterious, impossible standard of acceptability. It was essential to dress, speak, gesture, and think in ways I scarcely understood. My blindness marked me as irretrievably different. I sat on the sidelines while other girls danced. I listened to the details of parties to which I had not been invited. I followed the ebb and flow of my friends’ crushes. It seemed as though everyone else had stepped through a magic door, while I still searched vainly for the key. Once, in my high school Spanish class, I read a short story about a homely young woman left alone after all her friends have married and gone away. I felt a cold knot of foreboding. Some day that would be my story too. My friends would marry and have children, and I would be left behind. Already I had absorbed the message that marriage and motherhood did not lie in my future. I know now that some blind girls, more outgoing and confident perhaps, have a fuller social life than I had as an adolescent. My experience as a blind teen was not universal. But it was not unusual either. Sadly I believe it was closer to the rule than the exception. The public generally regards blind girls and women as unlikely candidates for motherhood. First of all we are often perceived as asexual, uninterested in dating, and unattractive to potential partners. Second, we are considered helpless, incompetent, and unable to care for ourselves, let alone tend to small children. We can’t be trusted to care for a neighbor’s children for a few hours; we certainly can’t be responsible for a growing life for eighteen years. Relentlessly bombarded with these negative assumptions, it is hard for us, as blind women, to believe that motherhood is truly among our options. Loving parents and a supportive circle of friends offered me the precious gift of hope. They taught me, encouraged me, and believed in me. But they could not always help me find creative solutions to problems that might arise due to my blindness. Sometimes they found it unbearably painful to hear about the prejudice I encountered and the self-doubts it fed within me. Isolated from Beyond Expectations contact with positive blind role models, I grew up with some of my biggest questions unanswered. As it turned out, my future was not written in those deadening early messages I received. I married at thirty-one, and at thirty-four I discovered the joys of pregnancy. I felt healthy and happy. I delighted in plans and preparations. And I reveled in the sense that I was joining a new community—the community of motherhood. No longer was my blindness the primary focus of attention when I met someone for the first time. Now, instead of my disability, people talked about pregnancy and parenting. These were things they understood, valued, and celebrated. My blindness receded into the background. I was no longer an outsider; I was one of the initiate at last. Pregnancy proved to be a common bond with women of all ages, from all cultures and social strata. An elderly neighbor urged me to scrub the floor on my hands and knees—the best possible exercise, she assured me; it had made all the difference when she had her three. A woman on the bus described her weight-gain pattern and questioned me about my own. The waitress in a Chinese restaurant warned me to avoid salt. Everyone had childbirth stories to share; everyone asked if I would breastfeed or use formula; and did we want a girl or a boy, or didn’t we have a preference? Not surprisingly, of course, I heard the inevitable murmurs of doubt and apprehension. How was I going to manage? Could I get extra help? One friend assured me, every time we met, that I would do just fine because I had “plenty of good common sense.” Another told me that I was the most courageous person she’d every known. Parenting does take courage—more than most of us can imagine at the outset. And without common sense few of us would survive parenting or anything else. Still I found myself wondering whether I would be deluged with such high praise for these virtues if I were sighted. By the time I married I knew there were more than a few blind mothers out there. But I didn’t know any of them personally. I had never spoken directly with a blind woman about her experience of raising children. When my husband Dick, who is sighted, and I started to consider having a child, I launched a full-out search for blind mothers. At the time I did not belong to any blindness organization, and I had few blind friends. I was very much alone, not sure who or what I would find. A series of inquiries finally led me to a collection of articles on child-raising transcribed into Braille by volunteers in Fairfax County, Virginia. Through this volunteer group I located Lucy and Deborah, two of the blind mothers who borrowed these materials. Both were eager to correspond with me, delighted to share their stories and offer their encouragement. For months our letters flew to and fro (e-mail lay in the unimagined future) as I tossed forth questions and they answered as well as they could. They recommended baby carriers that would leave my hands free for a cane or a guide-dog harness. Mixing formula was no problem, they assured me, but 84 Kent breastfeeding was the way to go. They explained that they attached bells to the shoes of crawling infants and lively toddlers; that way they had no trouble keeping track of a child’s whereabouts. For the first time in my life I was hearing a new and welcome message, reinforced by each letter I received. Like any mother, these new friends assured me, I would need to be well-organized, to plan carefully, and to build a strong support network. But I could create a stimulating environment, keep a child safe, and provide all the necessary loving care. Blindness was not an obstacle to motherhood. These mothers, my mentors and friends, were the living proof I hungered for. They were there for me throughout my pregnancy and in my daughter’s early years, providing a special brand of support I found nowhere else. Now I too have a birthing story to tell. I can reminisce about our endless hours of labor, with Dick holding one of my hands while his sister Joan held the other. I can tell how, in a daze of pain and exhaustion, I imagined that the OB nurse was a sinister presence, knitting in the corner like Dickens’ Madame Defarge. But my blindness gives the story an added twist. I remember how the ward nurse tried to exclude me from the hospital’s rooming-in program, claiming that I might have trouble finding my baby’s crib when the orderly wheeled it in. Lucy and Deborah understood that story completely, and echoed it with a few of their own to let me know I wasn’t the only one. Before we left the hospital with our brand-new daughter, Janna, I asked the nurses to teach me as much as they could about diapering, bathing, and breastfeeding. Most were cooperative, and offered a variety of helpful ideas. After warning me about diaper rash—the dire consequence if I failed to get the baby’s bottom sufficiently clean after a diaper change—one nurse suggested that I use A&D Ointment as a preventive measure. I applied it liberally each time I changed Janna’s diaper, and the dreaded diaper rash was never a problem. As Lucy and Deborah suggested, I used a baby carrier when Janna and I went out. I also did some research on strollers. Pushing a stroller ahead of me was not an option; my dog guide could not be expected to warn me of curbs or obstacles at such a distance. I called several manufacturers until I found one that produced a stroller with a reversible handle. This design enabled me to pull the stroller behind me instead of pushing it before me into the great unknown. Being a new mother had its down side as well as its joys. I remember seriously concluding one night that so-called postpartum depression was probably the outcome of postpartum lack of sleep. It was hard to find time for my own work amid the endless chores of baby care. My life felt narrow and constricted, locked into an unimpeachable routine of feedings, diaperings, and nap times. Sometimes I felt unbearably isolated. We had moved to Chicago only months before Janna’s birth, and I missed my widely scattered friends. I thirsted Beyond Expectations for contact with other adults, with people who could bring me news from the outside world. The exhaustion and isolation I felt are common to many, if not most, new mothers in middle-class America. Yet I had one added burden sighted mothers did not share. I knew that wherever I went people were observing me, wondering about me, at times doubting my abilities. All too many people, both strangers and acquaintances, questioned my capacity to care for my daughter and to keep her safe. “How do you keep from sticking her with a pin?” people inquired. “What if she puts something in her mouth—how can you tell what she’s got?” When Janna’s leg was in a cast to correct a slightly inturned foot (an anomaly that was present at birth) our landlady demanded, “What happened? You dropped her, huh?” Many a new mother lives with “performance pressure.” When the baby won’t stop crying, she notes her mother-in-law’s disapproving frown or her husband’s sigh of exasperation. But I feel that in my case such anxiety was heightened. In public places I could seldom forget that the critical eyes of the world were upon me. If my daughter fussed, if she had a spot on her dress, or if any minor accident befell her, I knew it would be attributed not to the ordinary ups and downs of babyhood, but to the fact that I, her mother, couldn’t see. I tried to keep Janna immaculate, cheerful, and of course safe from all the perils of childhood—not only for her sake, but in order to fend off the naysayers, to prove myself worthy for the parental role. When Janna was two years old I learned of a newly-established newsletter for blind parents. Barbara Akin, the newsletter’s dedicated founder and editor, was a blind mother of two, living in Phoenix, Arizona. Subscribers sent their questions and comments to Barbara on audiocassette, and she spliced them together to form each newsletter issue. I was thrilled each time the taped newsletter arrived in the mail. It was exhilarating to feel myself part of the evergrowing community of subscribers, eventually numbering more than 400 in all. Through Barbara Akin’s extraordinary network, I found myself connected with blind mothers (and a handful of blind fathers, too) from across the United States and overseas, from the U.K. to Australia, from Malawi to West Germany. Despite an enormous range in our backgrounds and circumstances, we had immediate common ground. We belonged to a tiny minority, and we gravitated to one another in our quest for information, validation, and support. In Barbara Akin’s newsletter I heard the concerns of mothers whose schoolaged children were trying to answer classmates’ questions about blindness. I heard about children who were taunted on the playground because their parents were blind. I heard, too, the voices of parents who were working toward solutions by making themselves visible and useful—serving as room mothers, leading Scout troops, teaching neighbor kids to cook or crochet or carve pumpkins or play the guitar. Though I was still a neophyte, I was happy to share the bits 86 Kent of expertise I had already gathered. I remember one brand-new mom who was overjoyed to learn about my stroller with the reversible handle. My comment on the newsletter spared her countless hours on the telephone. Time after time, parents on the newsletter described painful encounters with neighbors, strangers, and even their own relatives—encounters in which their competence to care for their children was called into question. One woman told us that as soon as her husband left for work in the morning, her mother appeared at the door, afraid to leave her alone with the baby. Another blind woman said that, without consulting her, a neighbor had spirited her toddler away and changed his diaper at a picnic. I heard a litany of stories about strangers who assumed that sighted children actually took care of their blind parents. When a blind mom asked a passerby for directions, he bent down to the level of her five-year-old and explained gently, “Take your mommy over to the corner and help her cross the street when you see the light turn red . . .” One mother’s experience embodied my worst nightmare. As she was out shopping one day, carrying her baby in a backpack, a stranger launched into a vitriolic tirade, denouncing her for selfishly bringing a child into the world when obviously she couldn’t take care of it. A few days later she received an unexpected visit from Children’s Protective Services. There had been an anonymous report, which had to be investigated. Though the social worker found nothing amiss, and admitted that the baby looked healthy, happy, and clean, the agency continued to call and visit for the next five years. This mother had never abused or neglected her child. Yet, because she was blind, she was under suspicion. I ached for this woman whom I had never met. I could imagine her humiliation, and her ever-present fear that some day the authorities would decide to take her child away. What happened to her could happen to any one of us. In a world where so many view blindness with contempt and dread, how could any of us be truly safe from such an assault? Fortunately, no investigator ever knocked at my door. But plenty of my experiences echoed those of the other parents on the newsletter. Whenever possible, I responded with humor to the patronizing comments and absurdly custodial behavior of people I met. Humor was my survival strategy, my lifeline, my way of fighting back. I was fighting for my dignity and my right to live freely in the world, and I was fighting for a healthy relationship with my daughter. In order to be an effective parent, I had to have Janna’s respect. I had to make sure she did not lose respect for me, even when she saw others treating me as though I myself were a helpless child. I had to show her that I was in control, that these strangers were misguided, ill-informed, and downright silly. Until Janna was in fourth grade I walked her back and forth to school, which was three blocks from our house. The crossing guard, on patrol in front Beyond Expectations of the school building, always made a fuss over me. Day after day, despite my protests he would try to grab my arm and “guide” me across the street. One afternoon it started to rain just as Janna’s class filed out to the sidewalk. The moment he caught sight of us, the crossing guard began to insist that I take his umbrella for my walk home. I pointed out that Janna and I would be home in a few minutes, whereas he had to stand in the rain for another half hour. Clearly he needed the umbrella far more than we did. He continued to argue and cajole as I walked away with Janna, the rain pelting down upon us. “What was the matter with him?” Janna asked as we headed home. “How come he wanted to give you his umbrella so much?” “Oh,” I said, “he thinks blind people melt when they get wet. He wouldn’t want me to melt away, right?” Over the years, “melting” remained part of our shared vocabulary. Janna referred to our more anxious, patronizing acquaintances as “melty.” If someone tried to whisk me to the front of the line at the post office, urged me to pay half fare on the bus, or congratulated Janna for “taking Mommy for a walk,” Janna would listen politely. But as soon as we were alone she’d lean over and whisper to me, “Melt!” with a conspiratorial giggle. Children know no other reality than the inside of their own families. Though our household seemed unusual to the outside world, Janna accepted the fact of my blindness as utterly natural. Some things about our lifestyle were different because I couldn’t see. I didn’t drive, like her friends’ mothers did; we took buses and taxis, or else we walked. I didn’t read print; I read to Janna from books in Braille. Tara, my guide dog, could go into restaurants and ride with us on airplanes. But though my methods were not the standard ones, the end result was, I believe, a normal family life. We took delightful family trips. We argued over bedtimes, homework, and TV privileges. Janna joined the Brownies, had sleepovers, and survived the social upheavals of junior high. I learned from her as she learned from me. Her view of the world enriched and expanded my own. I hope that when she looks back Janna will feel that she had a happy childhood, filled with fun, friends, and opportunities. I would like to think that she grew up with no more than the usual childhood trials and disappointments, that my blindness did not impose any extra hardships upon her. As her mother, I’m hardly in a position to be objective. Maybe some day she will tell her own story, and will try to answer the question her friends so often ask her, “What’s it like to have a mother that’s blind?” As vividly as if it were last week I recall my joyous excitement as I carried Janna, our two-day-old daughter, up the stairs to our apartment, ready to begin our new life as a family. Somehow, incomprehensibly, eighteen years have sped by since that memorable day. Late last summer Dick and I delivered Janna to a college dormitory and left her, chattering happily with her new roommate. We returned to a house strangely empty and silent. I wandered through her deserted 88 Kent room touching cherished artifacts—her stuffed penguin, her collection of candles, the storybooks I transcribed into Braille so I could read to her at bedtime. The mother–daughter relationship is a lifelong bond, and Janna and I have entered its next phase. A few years ago I gave away the little bells that once jingled on Janna’s shoes. I passed them on to another blind mother whose son had just started to crawl. Through the Internet, and through my involvement with the National Federation of the Blind, I am now in contact with many blind parents and parents-to-be. Online, by phone, and in person we share experiences and exchange ideas. We hand along Braille board-games and storybooks, and offer whatever encouragement we can to one another. We are trying to break down isolation, to build a communication network that has never existed before. What matters in the end is not being an effective blind parent, but being a good parent. There are a few tricks of the trade that blind parents find helpful, but for the most part we rely on the same inner and outer resources that help all parents survive. We need the support of family and friends. We need plenty of common sense, and now and then a generous dash of courage.
-- Avinash Shahi Doctoral student at Centre for Law and Governance JNU Register at the dedicated AccessIndia list for discussing accessibility of mobile phones / Tabs on: http://mail.accessindia.org.in/mailman/listinfo/mobile.accessindia_accessindia.org.in Search for old postings at: http://www.mail-archive.com/[email protected]/ To unsubscribe send a message to [email protected] with the subject unsubscribe. To change your subscription to digest mode or make any other changes, please visit the list home page at http://accessindia.org.in/mailman/listinfo/accessindia_accessindia.org.in Disclaimer: 1. Contents of the mails, factual, or otherwise, reflect the thinking of the person sending the mail and AI in no way relates itself to its veracity; 2. AI cannot be held liable for any commission/omission based on the mails sent through this mailing list..
