Deaf Daughters
Every expectant mother totes around her own grab-bag of fears about what might go wrong with her newborn. Prospective parents of Ashkenazi descent have the added “Ashkenazi Jewish Genetic Panel” of prenatal screening tests to contend with, and its specter of potential genetic anomalies.
Though I had other worries as I entered the labor and delivery room, deafness was not one of the things I feared for my newborn. Congenital hearing loss was nowhere revealed on the genetic tests we’d had — Jewish or otherwise — and I never imagined that my baby might not hear.
When our daughter failed the newborn hearing screening test, and we warily entered the world of audiologists, otologists, and otolaryngologists (not to mention cardiologists, ophthalmologists, and the others we needed to consult as we sought to rule out the many syndromes involving deafness), I for the first time studied my family tree. To my surprise, I discovered that there were deaf relatives in my family — including two deaf sisters living in an Austrian shtetl in the 1800s — more than five generations before I gave birth to my daughter.
Geneticists looking at my family tree doubted that there could be a pattern traceable from my deaf great-great-aunts to my baby, especially since (with the exception of the aunts’ children) there was no deafness in any of the many, many children in between. But it turned out that the geneticists’ predictions were wrong. And with the arrival of our second child, there are once again two deaf sisters in my family tree.
A Connexin 26 disorder is the precise genetic cause of our daughters’ deafness. (It is now tested for, in the Ashkenazi Jewish Panel for Hearing Loss and Usher Syndrome.) Through a series of blood tests, we learned that my hearing husband and I each recessively carry a flawed copy of the GJB2/Connexin 26 gene, and we have passed these on to our girls.
This genetic information has allowed us to rule out the many syndromes involving hearing loss: we no longer need to test our girls’ kidneys for Alport’s, their hearts for Long QT, or their eyes for Usher’s. Connexin 26 is the cause of non-syndromic hearing loss.
At the same time, this information has confirmed what my family tree hinted at: that deafness may well continue down the family lines, affecting our children’s children and beyond.
When my daughters were very small, i grieved for what they couldn’t hear. I could not stop wishing, with every rustle of leaves, every footfall, every whisper from other mothers to their children, that my girls could hear; so they wouldn’t have to startle when I came into a room, so their overly-diligent eyes could relax for a few seconds, so I could share with them the many sounds I cherished. As a hearing mother, sharing experiences with my children and communicating — the very pathways to bonding and intimacy — felt profoundly challenged.
Though my daughters’ congenital deafness came as a shock at first, I was no stranger to the experience of not hearing, and not being heard. My mother had a significant hearing loss throughout her life. Hers was not thought to be genetic, but rather the result of mastoid infections and botched surgeries during infancy. Whatever the cause, my mother’s deafness and a variety of other emotional factors resulted in her retreat. She kept to herself and was only intermittently attentive. Far more often, she tuned me out.
So, while I was consumed as a new mother with my daughters’ hearing challenges, I was also consumed with my own. I hadn’t had a model for hearing or being heard in my relationship with my mother, and I gravely questioned my own capacity for hearing my children.
I felt surrounded by deafness. As the daughter of a mother who had difficulty hearing me, both literally and figuratively, I wanted more than anything to find a way, as a mother of deaf daughters, to be close and connected. But how? At times my girls’ deafness didn’t feel like a big gulf, especially when our interaction was largely physical and non-verbal; but at other times — when a lullaby snuck out of me and my grief for all that they couldn’t hear spilled out all over again, it felt impassable. I had trained for many years as a singer and longed to share with them the music I loved. I longed to share everything, to attain intimacy with my children. Given the disconnectedness of my childhood, I prayed that I could.
When I learned of my deaf great-great-aunts, I began scouring historical records and calling relatives in search of information. I urgently wanted to know what life was like for them, how their mother managed, and how they fared. Were they integrated into the family, or were they kept apart, shut out? Did others learn to communicate with them? How? In Sign or in some other way?
It was difficult to uncover how they lived day-to-day, so long ago. But I did learn one detail: when they became mothers, they would tie strings from their wrists to their babies at night, so that they could feel a tug when the babies cried and would wake to care for them.
Learning of this heritage — my ancestors’ innovation of a string, forging a way to hear and to connect to their children — provided me with a model for the intimacy I was seeking. And it taught me that what I pass on to my girls includes much more than the particulars of a genetic code, or even my own particular childhood experiences. What I pass on includes how I choose to frame what’s happening — for myself and for them — and how I manage to stay creative and connected through it all. Strings, wrist-to-wrist, in whatever way makes sense at a given time.
If our daughters someday have deaf children of their own, who knows what parts of their heritage they will borrow from, or what sorts of decisions they’ll make? We decided to give our girls access to sound through hearing technology. Since they have different degrees of hearing loss, we chose high-powered hearing aids for one and cochlear implants for her sister. As a result, they are part of a new, emerging hybrid: the hearing deaf. They go to school in the mainstream, suited up with wireless FM systems that allow them to hear their teachers’ voices through the classroom din. They speak to their friends without a hint of accent. A moment I never expected: my older daughter was just chosen as “lead vocalist” in her school’s music program. Another singer in the family!
When we first pondered the communication options we had — using hearing technology and spoken language, or using Sign to communicate — my concern for their ability to connect with us and with those around them took a central place in my thinking. And like all parents, I wanted our daughters to have the greatest possible opportunities — to follow their dreams, to find friendship and love, to pursue meaningful work.
Our choices concerning the girls’ communication pathways were not as private as you might think — our circumstance ignited sparks in a political firestorm between those who think it’s best for deaf kids to be aided to hear and to speak, and those who think it’s best for them to live Deaf with a capital D, using Sign Language. Everyone had an opinion: teachers, audiologists, other parents, Deaf adults, friends and strangers alike. As hearing parents of deaf children, we stood, inevitably, at the center of the highly fractured Hearing/Deaf divide. I found as much vehemence in the Jewish Deaf community as anywhere else, and over the years and on a variety of occasions have experienced feeling ostracized for my choice to use an Oral approach, rather than Sign.
It’s not that I didn’t want our family to learn Sign (in fact, I began learning it immediately after our first daughter was born, and gained some substantial competency in it) — it’s that I didn’t want to be confined to bumbling around in a distant second language as I interacted with my young children. I wanted to communicate fluently and intimately, sharing my heritage and culture via my native language — like other parents do. These were the pathways I knew to connection and closeness.
From the moment the children got access, they soaked up sound — speech, music, bird-song, rainfall. They soon began to speak, and in time they were imitating accents, matching pitches, and singing show tunes. Playing whisper games! Using the telephone! They were marvels to hear. We celebrated every utterance — even my older daughter’s exclamation of the word “shit,” with her perfect enunciation of that final (high frequency!) “t.”
The ability they now have to communicate with the 99.98% of the population that uses spoken language gives them a myriad of options. This ability does not change the fact of their deafness; at any and all times, they can remove the devices that give them access to sound, and they can slip into silence. It is their choice, and I envy them for it. They have not experienced feeling excluded or ostracized by hearing peers. They continue to develop both speaking and Signing skills, and I can only hope that they will also find acceptance in Deaf communities — Jewish and otherwise — for all that they are and all that they share.
Our daughters are currently enrolled in a Jewish day school. They are happy to be part of a robust, tolerant Jewish community, sharing in this identification as they navigate experiences in which they are often the only children who are deaf and also gluten-free. (They have celiac, another condition prevalent among Ashkenazi Jews!) Their teachers make every effort to assure their access. A rare glitch came early on, during the first days of school, when there was an instruction for the students to cover their eyes during the Sh’ma; thus preventing my daughters from being able to read the words of the prayer and follow along! So long as their eyes can be open to supplement their ears, they can thrive.
It doesn’t always come easy — there are breakdowns of technology, of communication, of friendships, of spirit. The days can be tiring; the children must be on the lookout for visual cues and context to fill in the inevitable auditory gaps. At night, they remove their technology and enter what appears to be a peaceful silence. We use sign language then, or we simply rest. At bedtime, I sign for them to go to sleep, hoping they can relax their still scanning eyes. As my signing hand falls and I walk out of their bedroom, I make out an imaginary string, trailing loosely behind me — a sign that I hope connotes our connection.
Jennifer Rosner is author of the memoir If A Tree Falls: A Family’s Quest to Hear and Be Heard. She has a Ph.D. in philosophy and is writing a novel about a grandmother and the child she hid during WWII.
Jennifer Rosner is author of the memoir If A Tree Falls: A Family’s Quest to Hear and Be Heard. She has a Ph.D. in philosophy and is writing a novel about a grandmother and the child she hid during WWII.
In the 2011 documentary film “Deaf Jam,” now making the rounds of film festivals, Aneta Brodski (see cover) signs her way into spoken poetry slams. Aneta, whose young brother and American-Russian-Israeli parents are also deaf, uses her whole body to make A.S.L. as expressive as spoken poetry. The film, produced by Judy Lieff, shows the rhythmic poetry collaboration between Aneta and Palestinian-American teen poet Tahani, who is hearing. PBS’s Independent Lens, where “Deaf Jam” aired in November, calls the creative partnership of the two young women “a new form of slam poetry that crosses boundaries, cultures, and languages.” deafjam.org
