When her daughters were born deaf, Jennifer Rosner was stunned. Then she discovered a hidden history of deafness in her family, going back generations to the Jewish enclaves of Eastern Europe. Traveling back in time in her mind, she imagined her silent relatives, who showed surprising creativity in dealing with a world that preferred to ignore them.
Here, in a “gentle meditation on sound and silence, love and family” Rosner shares her journey into the modern world of deafness, and the controversial decisions she and her husband made about hearing aids, cochlear implants and sign language (Publishers Weekly).
Punctuated by memories of being unheard, Rosner’s imaginative odyssey of dealing with her daughters’ deafness is at its heart a story of whether she—a mother with perfect hearing—can ever truly hear her children.
|Publisher:||Feminist Press at CUNY, The|
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California, July 2000
I WAS CALM WITH OUR NEWBORN BABY GIRL nestled in the crook of my arm. I hadn't expected to be calm in new motherhood. Yet, here I was with Sophia. Soaked and happy. Anchored by her gaze.
We had arrived at the hospital to find a nursing strike in full force. Our doctor, who'd assured us that he had no plans to travel in July, was away on vacation. We were settled into a labor room by a strikebreaker scanning the room for sterile gloves and fetal heart-rate monitors.
Bill got hold of a birthing ball and a cup of ice chips, and sought to soothe me with reminiscences of the day we conceived. It was Halloween morning and we had been trying to conceive for fourteen months. Bill proclaimed to me, with prophetic sureness: "YOU are getting pregnant today." We had a houseguest, but Bill just handed him the dog leash and a shopping list of assorted candy and ushered him out the door.
Now, nine months later, here was our girl, swaddled and warm, with wispy brown hair and huge slate eyes. Sophia.
Shoulder to shoulder with Bill in our narrow hospital bed, I lost myself in the chub of Sophia's feet and the translucent pink of her toenails as she dozed off to sleep. I hardly noticed the beeping monitors, the flurry and rush of nurses, the ring ring of the telephone. I was in a bubble, impervious to our surroundings. I had experienced this insulation only once before in my lifetime, when Bill and I stood together beneath our wedding chuppah, alight in a September's sunset six years earlier. My attention fixed only on him — his peacock blue eyes flickering in the candlelight, his sure voice, his vows, riding softly on the night air — until the shatter of glass brought forth the cheers of family and friends, Bill's lips to mine.
I was jarred out of our new magic when a hospital volunteer with a red and white polka-dotted hat wheeled in a computer cart and prepared to run the newborn hearing test. Unapologetically, she swabbed Sophia's forehead and applied electrodes in four places. Sophia stirred in sleep, but did not wake. Stepping gingerly around the computer wires, the volunteer came to stand at the keyboard, pushing keys and then waiting, staring at the monitor. Nurses had already been in and out for heel sticks, eye drops, immunizations, a vitamin K shot. I continued to gaze at Sophia. She was all olive, rose, and brilliant slate gray, her features still mushy like a newborn pup's.
I glanced over at Bill to see if he noticed the way Sophia's lips pouted. I was surprised to find his face sallow. He was up, questioning the volunteer about the numbers that appeared on the screen. His stare alternated between Sophia and the computer monitor.
"What are the typical scores for this test?" Bill asked.
"The numbers are usually in the hundreds," the volunteer mumbled almost inaudibly.
I sat up and gaped at the tiny white numbers, dwarfed by the hulking black monitor: 4 ... 7 ... 3.
"Soph, you're not exactly setting the world on fire." Bill's voice was thin.
"Bill, what's going on?"
"Come on, Sophia."
The volunteer shifted her weight, staring at us awkwardly. Then she walked over to Sophia, removed the electrodes, and gently wiped the goo from Sophia's hairline. She stuffed the tangle of cords on a low tray, switched off the computer screen, and guided the computer cart, backward, out of the room.
An audiologist came in five minutes later. "I've been notified that Sophia didn't pass the hearing screen, but remember, your baby has been 'underwater' for nine months," she said in a reassuring voice. She went on to explain that residual amniotic fluid or a bacterial infection may have caused Sophia to fail the screening test. Statistics were in our favor: twenty-six of thirty babies who fail the initial test pass it two weeks later. Only a small number turn out to be hard of hearing or deaf.
I sat, silent, with Sophia curled in my lap.
The bright sunlight beamed through the thick hospital window. I had just finished my doctorate in philosophy, but lacked the philosophical tools to deal with this. My baby could be hard of hearing or deaf? How was this possible? Like all expectant mothers, I had harbored fears for my baby, choking down prenatal vitamins the size of horse pills and eating platefuls of kale to ward off the numerous maladies catalogued in the pregnancy books. But deafness? I'd had no reason to consider it. Now, despairing passages flashed through my head: Aristotle's notorious claim that the deaf, incapable of speech, are incapable of reason. Immanuel Kant's view that the "Dumb" (the mute) can never be full-fledged persons. The categorization, in Jewish law, of deaf mutes as forever childlike. I knew these conceptions were outdated, from another, less generous time, but they eroded my spirit anyway, and dreams I didn't realize I carried — dreams full of a child's chatter and song — began to wither deep inside.
The audiologist broke into my pained muddle with a pragmatism that was strangely comforting. "I can't have any idea what this must be like for you. I don't have a baby, never mind a baby that might be deaf." She went on to take down our history, asking if there was anyone with hearing problems in our families.
My mother. My mother had substantial hearing loss. She had worn hearing aids all of my life. They whistled and never seemed to work very well. But so far as I knew, my mother wasn't born with her hearing problem — she lost her hearing after a series of mastoid infections and surgeries. It wasn't genetic. I told the audiologist what I knew of my mother's history.
After the audiologist left, I dialed my parents in Connecticut. With Sophia in my lap, the phone cord bunched and tangled like curly hair just above her nearly bald head.
"Dad, Sophia failed the newborn hearing screening."
"She didn't pass the hearing test. The audiologist said it might be due to fluid or a bacterial infection. They're going to test her again later. But ..."
"Jenny, I'm sure it will clear up. Listen, we're flying out there in a few hours. We'll see you this afternoon."
"But what about mom's hearing loss? Is there any chance it's genetic?"
"No, no. Don't push the panic button. I'm sure it will all clear up."
Hours later, the same volunteer wheeled in the computer and re-tested Sophia. There again were those tiny white numbers — too low, much too low. Sophia lay asleep, unperturbed as Bill and I stood powerless: we couldn't will her to hear the sounds being piped into her brain.
My parents arrived in the early evening, gift bags filled with baby blankets and onesies rustling in their arms. They settled into our crowded hospital room and took turns cradling Sophia. The place teemed with people — nurses and doctors, lactation consultants, various friends wanting to meet Sophia, a "welcome wagon" lady from the local synagogue with a challah in tow. Through the clamor, I felt a burgeoning grief rise inside me. It clashed with my joy and wonder at Sophia — how she opened her tiny mouth like a baby bird, how she stretched all twenty-one inches of herself, from the tips of her fingers to the tips of her toes, as she yawned. Against my own groundless hopes, I recoiled from every attempt at reassurance. "She probably still has fluid in her ears," my parents kept saying. I could hardly look at Bill.
Later that night, my father walked to a nearby market to get us provisions: my favorite black currant tea, rice pudding, bagels and cream cheese, a pint of fresh blueberries. Then my parents left. They would visit the next day, before their flight back. We were alone again. Bill and I nestled Sophia, capped and swaddled, into the bed. I stacked newborn diapers into the bureau drawer, ate a spoonful of rice pudding, then huddled next to Bill on the remaining swath of bed, burying my face in his shoulder. The prospect of middle-of-the-night feedings was a relief to me. I knew I wouldn't be sleeping tonight.
The following day, the audiologist came to schedule Sophia for further tests. She tried to reassure us again with statistics. I clutched the small, striped hospital blanket that Sophia was swaddled in at birth. Nurses bustled about, preparing us for discharge. We were handed a form to rate our comfort level with the various tasks of baby care: nursing, diapering, bathing. We were novices at all of it, unsure even of how to rate ourselves. I stood paralyzed beside the baby bassinet, wondering if it would be all right if we took the swaddle blanket with us. Our discharge papers contained the order to return to the hospital in two weeks for audiological follow-up.
Sophia's newborn diaper dangled off her tiny, silken body as I arranged her in her new infant car seat for the drive home. Upon our arrival, our German Shepherd, Lucca, barked out a welcome. I felt Sophia startle.
Inside, I settled Sophia in her crib, newly padded and bumpered. Then I bustled about, preparing the nursery, and myself, for the continuous feeding and diapering cycles to come. With every sound — the closing of a drawer, the creak of a floorboard — my eyes darted to Sophia.
In the wee hours — our first night home with Sophia — I began to tie a string around the crib's maple post, like I had seen my grandmother do for good luck. As I looped the thin red cord into a flouncy bow, I heard the clicking and beeping of our fax machine. I entered my study to see pages falling in curls off the paper tray, brushing against my feet. I picked up the cover sheet, and in my father's distinctive, nearly illegible handwriting, read: To Jenny, Love Dad. I picked up the next page and saw that it was a family tree, scrawled in my father's hand. He must have added Sophia to it!
I gathered up the various pages and I saw that some of the names of my relatives were marked with an asterisk: Nellie, Bayla, Bertha, Sam, Moe, Judith. I wondered what the asterisks might mean. Could they connote relatives who died in the Holocaust? Other names on the chart had a tiny OK written next to them.
I rifled through the pages. At the very bottom of the last page:
* * *
My t-shirt dampened with cold sweat. I shivered. I couldn't seem to keep my hands, or the uncurled fax pages, steady. Sophia was crying — something I understood more from the cramping of my uterus and the letdown of my milk than from my sense of hearing.
I dialed my father — it was 7 a.m. in Connecticut. I could barely get any words out. He tried to dispel my worries. Again, he raised the audiologist's point that Sophia may have fluid in her ears or a bacterial infection — something that will resolve quickly. "But the audiologist hasn't seen our family chart," I sputtered bitterly. I knew my father wanted to protect me, but was he in utter denial?
When I showed Bill the chart, he hugged me tight.
"It's all right, Jenny. It's going to be all right."
"But how?" I countered. "There is deafness all around us."
There was my mother's hearing loss — which supposedly developed from infections in infancy, though now I couldn't help but wonder if it was actually a genetic, progressive hearing loss. And there was the documented deafness on my father's side of the family, too. Bill wasn't aware of any deafness in his family history. But we'd come to learn from a hasty Internet search that Ashkenazi Jews — Bill and I were both of Ashkenazi descent — have a heightened risk of carrying recessive gene mutations for deafness. If Sophia had a hearing loss caused by recessive gene mutations, she'd have inherited one each from both of us.
For the next two weeks, I put Sophia down only to devise, run, and then discount homespun hearing tests. I'd settle her on the bed, stand behind her, and clap my hands; then I'd question whether the sudden gust of wind created by the clap could explain her eye blink as well as the clapping sound itself. Or I'd rig up a towel (to shield the wind gusts) only to watch my clapping coincide with the billowing out of a stray thread that tickled her thigh. Or I'd wrap myself with a thick blanket (to dull the scent of my breast milk) while I cut the frayed edges of the re-rigged towel (to prevent thigh tickling). Then I'd clap my hands and hear Lucca bark at the same moment, perhaps in protest to it all. Eventually, I'd take Sophia back into my arms, sink into the bed, and try to synchronize my breathing with her gentle, sleeping breaths.
* * *
The morning of the follow-up appointment, Bill and I packed the diaper bag, settled Sophia into her car seat, and drove to the hospital. The jingle of bicycle bells. The ditty of an ice cream truck. A car honk from behind. We didn't speak. Bill looked ahead, driving. I stared out the window at the trees, a blur of gnarled greens and browns.
In a cramped testing room, we perched awkwardly on high stools and peered over the audiologist's shoulder at the computer monitor. Sophia lay asleep on a blanketed examination table, electrodes gooed to her head. Indecipherable sound waves, like peaking mountain ranges, appeared as sketches on the screen, then disappeared.
Nearly an hour passed before the audiologist turned off the computer and led us to a cluster of chairs in the corner of her office. Sophia woke with a start, her arms flailing, then fell back asleep on the table. A fluorescent light hummed overhead. The audiologist chose a huge yellow binder from the bookshelf, then came and sat across from us in a chair, the binder on her lap.
"Sophia has a severe sensorineural hearing loss," she began. She held up a page she had printed from her computer. It was a piece of graph paper spattered with little sound drawings: a barking dog, a ringing telephone, an airplane, a piano. There was a jumble of letters — the sounds of speech — clustered inside a banana-shaped outline. A sloping line, another mountain sketch, overlaid the drawings. The audiologist explained that the sloping line was Sophia's audiogram; it showed what range of frequencies and decibels Sophia could hear. Almost nothing in the "speech banana."
"So she can't hear us talk?" I asked hoarsely.
"No. She may hear some speech sounds — the wide open vowel sounds — but not much else."
The audiologist told us that the typical working ear has over fifteen thousand tiny hair cells that convert sound waves into neural signals. In Sophia's case, it was likely that a majority of these hair cells were broken or bent or missing. As she spoke, she handed me the binder. It was thick with information about deafness.
The audiologist enumerated possible causes of Sophia's hearing loss, beginning with recessive genes from Bill and me. I could see that I was shaking before I felt it. I darted to the examination table, scooped up Sophia, and rocked her back and forth, back and forth. She was so tiny, just two weeks old, her hands still transparent. What would life be like for her? How were we going to communicate? The audiologist spoke about hearing aids, about sign language, about the cultural divide between Deaf and Oral schools. She was saying that deafness was sometimes syndromic, and that tests would need to be ordered to rule out eye, kidney, and heart disorders. We should schedule a genetics consult, she added as she looked over my family chart. Bill came to stand next to me, and steadied my quaking hand.
* * *
We drove home with the car windows up. I watched a cluster of businessmen standing together at a street corner, their faces animated with talk. One man's face contorted in laughter. Another's, in mock surprise. The car filled with Sophia's short, bleating cries, then quieted.
I racked my brain for memories, as I had each day since receiving the fax. Had anyone ever spoken of deaf relatives?
My sister knew the family history. She had told me last night over the phone.
"Yeah, I remember looking at the family tree. There were two deaf sisters — Dad's great-great aunts back in the 1870s. Some of their children and their children's children were deaf, too. Two of Dad's uncles — Sam and Moe. I don't know if he knew them."
I was shocked at what she knew. When did she learn all this?
My sister told me she wrote a paper on our family's geneology years ago, in high school. Grandma Rose had traced the family lines back to the Wertheim strand, and some cousins had worked on it too, on the Fleischer side. My sister had interviewed a few relatives who remembered Dad's uncles conversing in sign language at a familyreunion. "I'm sure Dad assumed you knew this, too," my sister told me.
As a young girl, the youngest of four children, I was thrown in with the lot. At the dinner table, my older brothers were bursting with commentary, my sister, with earnest questioning. I couldn't get a word in. I tried raising my hand, hoping to be "called on" as if in school. I tried shouting. Often, it was a visiting relative, an aunt or an uncle, who would finally cut in. " Why are you yelling, Jenny?" "Because no one ever listens to me!" I was lost in the din.
Was I out of earshot when they spoke of deaf relatives? Or was I just not listening? There was deafness everywhere, up and down the limbs of my family tree! Not a word. Had I heard.(Continues…)
Excerpted from "If a Tree Falls"
Copyright © 2010 Jennifer Rosner.
Excerpted by permission of Feminist Press.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of Contents
OTHER BOOKS IN THE REUBEN/RIFKIN SERIES,
California, July 2000,
California, August 2000,
California, September 2000,
California, October 2000,
California, October 2000,
California, November 2000,
California, November 2000,
Massachusetts, May 2001,
Massachusetts, December 2002,
Massachusetts, September 2003,
Massachusetts, October 2003,
Massachusetts, March 2004,
Massachusetts, August 2004,
Massachusetts, September 2004,
Massachusetts, February 2005,
Massachusetts, April 2005,
Massachusetts, December 2006,
Massachusetts, August 2007,
Massachusetts, September 2007,
Most Helpful Customer Reviews
This book was fine to learn about the hearing impaired community, and how a family dealt with their hearing impaired daughters. Some fiction was interspersed, but it added very little to the book, as the writing was journalistic.
A red she-cat with green eyes and white mitts pads in. Confident and beaming with excitement she sits a distance away from the other females, but near to Goldenstripe. "I am Foxwillow. And I am looking for a mate as well." She purrs as she sits and curls her tail around her. Her bright green eyes sparkling.
This book is about a family that suffers the heartbreak of bearing a deaf child without realizing the genetic potential for it lying quietly in their genetic structure. Although Jennifer was raised by a hearing impaired mother, the fact that it was a genetic defect, occurring throughout her family tree, never occurred to her. When it was discovered that she and her husband both carried the recessive gene, it was proof positive that their newborn daughter, Sophia had a severe hearing loss. How they deal with the loss and decide which world their child should inhabit, the hearing world with the help of technology or the deaf world where she might fit in more happily, is explored, although not as fully as I would have hoped. I did not fully understand the trauma or the turmoil involved as Sophia grows up or the reasons it was considered such an enormous problem to choose one world over the other. Why couldn't the world that encompassed "Signing" be combined with the world of "Hearing", compatibly? Why was there so much controversy about choosing one or the other? These competitive attitudes were not presented well enough for me to truly empathize with the situation, although I could empathize with the plight of a parent in such a difficult situation. Even when a second child is born with an even more profound hearing loss, I am not completely engaged in the process by the author, although I am drawn into their lives, superficially, and understand the fear Jennifer has for her children. She felt isolated by her partially deaf mother who never quite felt comfortable in the world because of how she was treated as a child and never knew how to make Jennifer feel as though she was a good fit in the family. With her own children's hearing loss to deal with, Jennifer also learns more about the conflicts her mother dealt with and discovers that her mother probably never meant to isolate her but rather was trying to deal with her own disconnection, as well, and hoping to prevent her from ever feeling that way. Whatever flaw she discovered in her daughter was pointed out and rectified. Jennifer is very concerned that her children do not suffer in that same way and wants to make sure that they feel loved and wanted and engaged in the family life despite their deafness. I commend the parents for their almost constant positive approach to the problem of deafness, in a hearing world, overcoming their fear and frustrations in order to do the best possible thing for their daughters, even uprooting themselves and moving to a new community where facilities were better for them. Their sacrifices are not to be taken lightly. They chose to try and mainstream their children rather than isolate them in a world without sound and, luckily, they are so far successful. Woven into the true tale of Jennifer's trials is the moving tale she creates about her deaf ancestors, whom she has not been able to learn much about but whose story she embellishes to illuminate the ostracism that the deaf faced, in years past, as they were thought mentally deficient and were often shunned by the community. She tried to embrace the very thing she fears most so that she would be able to try and offer all of life's possible gifts to her own children. Her husband was her constant support and full participant. Together they thrill with delight as their children, using marvelous devices developed by science, hear and speak as if they were hearing children and n