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Eleanor Reid was two days old when a tech tested her cochlea. The screening is routine for all newborns, and ideally it’s conducted while the baby sleeps. Ellie sucked on a pacifier coated in sugar water, but her blue eyes remained wide open as the tech inserted tiny earbuds into her ears and played her a prolonged tone. The cochlea should echo the tone back into the earbuds, but the machine registered nothing. Many newborns don’t pass the screening, the tech told Ellie’s parents, Christine and Derek. Sometimes a baby’s cries interfere with the test, sometimes fluid in the ears is the problem.
By the time Ellie’s audiologist appointment rolled around three weeks later, Derek was back at work as a foreman. Christine told him not to bother taking time off. She wasn’t worried. To make sure Ellie slept, she didn’t breastfeed until the appointment. Ellie’s howls of hunger reverberated off the walls as Christine rushed around the Braintree Rehabilitation Center in suburban Boston in search of the right office. Once there, Ellie nursed and promptly fell asleep, while nurses tested her inner ear and monitored her brain activity.
After the two-hour-plus exam, the audiologist left the room. When she returned, she was carrying a three-inch-thick packet of papers and fliers. “Your daughter has profound hearing loss,” she told Christine. Normal conversations register in the 60-decibel range, but the tests revealed that Ellie could hear nothing below 120 decibels. Through her ears, a gunshot would be no more than a whisper.
“The only thing I could think of was that I would never be able to take my daughter to an Air Supply concert,” Christine tells me, leaning into a recliner in her living room in Braintree. “Oh my god—I have the worst taste in music.” A 37-year-old New York native and a self-described “wicked type A,” Christine talks fast and laughs a lot. She inherited her love of the Australian soft-rock duo from her mother. When she was four months pregnant with Ellie, she made a bright yellow poster for her daughter and had the band members sign it. It read, “Third Generation Air Supply Fan On Board.”
Parenting is full of big decisions. But in the first year or so of Ellie’s life, when other parents are focused on helping their kids to walk and talk, Christine and Derek had to think about an issue that many parents never even contemplate: They had to decide which culture their daughter should be a part of. Ellie could join their world, the hearing world, if she received cochlear implants. Yet implants don’t work perfectly. Everyday conversation can remain a challenge, for instance, especially when there’s a lot of background noise. What’s more, implants might cut Ellie off from a community that, some would argue, is her birthright: the Deaf world, where lack of hearing is an identity to be celebrated, not a disability to be cured. As Derek puts it: “How do you explain that she was fine the way she was born when the first thing we did was change her?”
In fact, the Reids’ decision is bigger than that, bigger perhaps than they feel comfortable acknowledging. Very few hearing people are aware of the vibrancy and depth of Deaf culture. It’s a world with its own etiquette and norms. It has languages—the many different forms of sign—as rich and nuanced as any spoken tongue. Like any culture, it has its own interpretation of history. There are Deaf theater companies and Deaf film festivals and Deaf comedy shows. And these are not facsimiles of hearing-world versions, with speech replaced by sign. The shared experience of deafness, and the physical nature of sign, make Deaf arts distinct in a way that most hearing people cannot appreciate.
More than 90 percent of deaf children are born to hearing parents, so this culture is not inherited—it is discovered, via mentors and peers. And by helping deaf children to hear, implants make that discovery less likely. So for many Deaf people, every implanted child is a person stolen from their culture. Some call the process cultural genocide. That’s why the Reids’ decision was so profound. Just by doing what parents do—loving their child and fighting for what’s best for her—they had to decide whether to contribute to what might be the death of a culture.
After passing through the outer and middle ear, sound waves enter a fluid-filled, spiral-shaped chamber. This is the cochlea. Thirty thousand tiny hair cells line a membrane that runs through the center of the chamber—miniature machines that convert sound into electrical signals, which then travel along the auditory nerve and into the brain. For the vast majority of deaf and hard-of-hearing people, these hair cells are damaged or missing.
For children born profoundly deaf, or who lose hearing before they can talk, the prospects of effective speech are virtually nonexistent. Lip-reading, too, is daunting: If you have never heard, you have no mental sound to link with lip movements. Even if that link could be made, around a third of spoken English is indistinguishable on the mouth and lips. (Look in a mirror and try to tell the difference between words like “pat” and “bat,” or “to” and “do.”)
Sign languages lack a written form, so much of deaf history has been lost to time. When the history was recorded, the voices of the deaf were rarely included; mostly the accounts come from philosophers, poets, and artists who have interacted with deaf people and, as one Deaf studies expert put it, mused about “this alternative way of being and thinking in the world.” Aristotle believed that “hearing is the sense of sound, and sound the vehicle of thought; hence the blind are more intelligent than deaf-mutes.” References to the deaf in the Old Testament suggest a sympathy towards the non-hearing, but the same cannot be said for early Christians. Paul’s Epistle to the Romans reads: “Faith cometh by hearing, and hearing by the word of God.” A deaf person, under such a view, could not have faith.
It’s not until the 18th century, and the advent of schools for the deaf, that deaf voices become more widely heard. The most famous of these early schools was started in France by Charles-Michel de l’Épée, a hearing abbot who chanced upon deaf sisters and learned enough rudimentary sign language to communicate with them. The deaf have come to revere the abbott, and up until recently recounted his tale in epic terms. Carol Padden, a linguist at the University of California San Diego, recounts one version she heard: “The Abbé de l’Epée had been walking for a long time through a dark night. He wanted to stop and rest overnight, but he couldn’t not find a place to stay, until at a distance he saw a house with a light.” De l’Epée found a house with two young women, who did not speak. Only after their mother appeared and told de l’Epée that they were deaf did he understand. His life’s purpose—to help deaf people—became clear. “The story of the Abbé de l’Epée is almost always a preface to an official deaf-club event,” Padden writes.
The story might be apocryphal, but reverence for de l’Epée is well placed because the Parisian school he started catalysed deaf education. In 1817, Laurent Clerc, one of the school’s most prominent students, and Thomas Hopkins Gallaudet, a hearing American scholar with an interest in the deaf, founded what became the American School for the Deaf in Hartford, Connecticut. It would become the birthplace of modern-day American Sign Language. Deaf schools later proliferated, each with its own quirks, customs, and dialects. Much as hearing people say where they’re from when meeting a new person, Deaf individuals began including where they went to school.
Yet acceptance of sign was far from widespread. Educators at the Clarke Schools for the Deaf in Northampton, Massachusetts, banned sign and attempted to teach students to speak. They took their cue from Alexander Graham Bell, the man famous for inventing the telephone and infamous, at least in the Deaf community, for his abhorrence of sign. Bell believed that sign prevented deaf people from integrating into society, an opinion drawn from personal experience: his wife was deaf and his mother lost her hearing when he was a child. If deaf children found it hard to communicate with one another, went Bell’s thinking, they’d be less likely to pair up, and less likely to produce more deaf children.
The most important battle in the war between the two approaches—oralist and signing—was fought in 1880, when deaf educators from across the globe convened in Milan, Italy, for the Second International Congress on Education of the Deaf. There was only a single deaf delegate, and most fell squarely in the oralist camp. Attendees agreed upon “the incontestable superiority of speech over signs in restoring deaf-mutes to social life” and voted to use the oral method. Today, Deaf people see the conference as the bleakest moment in their history, an event that closed deaf schools around the world and drove sign languages underground.
The Dark Age of deafness didn’t wane until the 1970s, when William Stokoe, a teacher at Gallaudet, debunked the notion that ASL was nothing more than pidgin English. Others would later show that ASL was distinct from spoken English, and contained its own grammar and syntax. People started talking of Deaf culture, the D capitalized to distinguish the culture from the condition. And that culture began, slowly, to diffuse into the hearing world. The touring National Theatre of the Deaf took its shows on the road to help de-stigmatize sign. The deaf actress Linda Bove got her start there, before going to Sesame Street, where she introduced two generations of children to sign language and the idea that being deaf was something to celebrate.
For many adults, the introduction came from the 1986 movie Children of a Lesser God, in which deaf actress Marlee Matlin plays a former Deaf-school student working as a custodian at her alma mater. She falls for a hearing speech teacher, played by William Hurt, who tries unsuccessfully to get her to speak instead of sign. Eventually, Hurt is forced to accept Matlin for what she is: a beautiful and proud Deaf woman. The movie earned Matlin the Best Actress Oscar and made millions aware of the Deaf cause. “The subject matter is new and challenging, and I was interested in everything the movie had to tell me about deafness,” wrote critic Roger Ebert. (Sensitivities still ran high. Many Deaf people excoriated Matlin, who has some residual hearing, for speaking when she returned to the Oscars to present an award).
The irony of this period is that it contains not just the flowering of the Deaf civil rights movement, which was based on the idea that deaf people didn’t need a cure, but also the emergence of something approximating just that—a cure. In 1984, the U.S. Food and Drug Administration approved cochlear implants. The devices come in two parts. A hearing-aid shaped computer, worn on the ear, digitizes incoming sound. That sound is then sent, by radio, to electrodes implanted in the cochlea, which activate the auditory nerve. At first, the FDA approved implants for adults only. But some argued that if children received implants just before they would normally begin speaking, the hearing parts of their brains might develop along the same trajectory as other children. They might learn to hear and speak.
To be clear: Cochlear implants don’t fix the biology of the ear. They’re a prosthesis, a workaround. People with implants cannot hear like non-deaf people. Users typically remove the processor to sleep and shower, and the batteries need to be replaced. When the processors are out or the batteries have run down, users are once again deaf.
In the weeks after Ellie’s diagnosis, Christine scoured the Internet, learning about deafness and looking for schools, eventually stumbling across the Learning Center for the Deaf, a school in nearby Framingham. Its philosophy is that deaf children should learn sign as their mother tongue, and reading and writing English as a second language. As with many in the deaf world, the Learning Center doesn’t see speaking as fundamental. The Reids were smitten. “Nobody was like, ‘Oh your baby is deaf. I’m so sorry,’” Christine says. “They weren’t there to fix my kid.”
With sign, Ellie would have an entrée into Deaf culture. Deaf people often love sign—its cadence, its use of facial expressions, its reliance on three-dimensional space—in a way that hearing people struggle to comprehend. Some discover sign later in life, and find that it can kindle a sort of a spiritual awakening. Ash Arp, a deaf woman in Arizona who was raised orally and received implants as a young adult, didn’t learn to sign until she was 17. In her blog, she writes: “Before I learned ASL and was a part of the Deaf community, it felt as if I were living in an old foreign film, where nothing was clear, where the world around me was muffled, where I was alone, without friends, without true understanding. I was able to grasp a word here and there, I was able to understand some simple things, but never with fluency, never with the ability to really grasp it. When I learned ASL and became a part of my Deaf community, my world suddenly had color, had vibrancy, had understanding, free flowing comprehension, exchanges of ideas, flow.”
The Reids enrolled Ellie at the Learning Center and felt empowered. Surrounded by deaf children and deaf educators, Ellie’s so-called disability disappeared. They began to wonder if cochlear implants were really worth exploring. Why not embrace Ellie’s deaf identity instead?
Yet the Reids also learned that they faced a series of painful trade-offs. Embracing Ellie’s deaf identity, for instance, could mean distancing themselves from her, because few hearing people who learn sign as adults become fluent. Barbara Herrmann, an audiologist at Massachusetts Eye and Ear Infirmary, tells the families she works with that adults who learn a second language typically reach intermediate level. Because of this, parents who give their child access to Deaf culture take a tremendous risk: If their own signing doesn’t improve, they won’t be able to speak the language their child feels most comfortable in.
Without implants, Ellie would also have to learn to read and write in a language—English—that she had never heard. She wouldn’t be able to learn by using rhyming games or sounding words out. What’s more, the structure of sign language sentences is nothing like that of written and spoken English. Because of this, Christine and Derek feared that no school could give Ellie the skills she would need to compete. The data back them up: The average deaf adult reads at the level of a nine-year-old, and has math skills that are only a couple of years more advanced. Christine also heard the stories about deaf adults who, regardless of skills and intelligence, struggled to find jobs in the hearing world. “I realized that it doesn’t matter how smart my kid is or how good she is at her job,” Christine says. “She’s always going to be at the mercy of somebody else.”
In fact, the Reids were unusual in the weight they gave Deaf culture when considering implants. When Ellie was 10 months old, the Reids joined a support group at the Learning Center made up of hearing and deaf parents. All the hearing parents had gone ahead with implants for their children, and all the deaf parents had decided not to. “The Deaf people stayed together and the hearing people [stayed together],” Christine says. “Derek and I were in the middle.” Christine asked the center to connect her with hearing parents of deaf children who had foregone implants. The school couldn’t find anyone.
For those in the Deaf world, many of whom were born with hearing loss, the very existence of cochlear implants wrongly presupposes that a deaf person is in need of fixing. In 1993, when the technology was in its infancy, journalist Edward Dolnick explained the Deaf cause to the hearing world in an article in the Atlantic Monthly titled “Deafness as Culture.” Dolnick quoted Deaf Life magazine: “An implant is the ultimate invasion of the ear, the ultimate denial of deafness, the ultimate refusal to let deaf children be Deaf.” In this view, the Reids, should they implant Ellie, would be perpetrating a horrific crime.
Discrimination against the deaf is termed “audism.” When I ask members of the advocacy group Audism Free America how they feel about a “cure” for deafness, they equate it to a cure for being black or female or gay. I counter that the analogy might be a stretch, since deafness is the absence of a key sense. Karen Christie, one of the group’s founders, rejects the notion. “People aren’t absent of whiteness,” she writes to me over Skype. “I am a woman but I am not absent of a penis.”
A generation of children with implants has come of age since Dolnick’s article appeared. At least half of those eligible for implants now choose to receive them and, at least in the United States, better screening for newborns means that hearing loss can be diagnosed at a few weeks or months, allowing children to receive implants much earlier. In places like the Netherlands and Denmark, where the cost of implants for children is covered by the state, the proportion of recipients is close to 100 percent. (Most major insurance companies in the US cover at least some of the costs of implants.) And while reliable statistics are scarce, experts say that even culturally Deaf adults—the same people who might have taken a rejectionist stance 20 years ago—have been getting implants for their deaf children and occasionally themselves.
These “mixed” families often prefer to stay out of the limelight. Several months ago, I asked Jonathan O’Dell, a training specialist with the Massachusetts Commission for the Deaf and Hard of Hearing, to put me in touch with Deaf parents who had gotten implants for their children. He reached out to several families, but nobody came forward. “You may know there is some degree of discomfort in the deaf community about cochlear implants, and I’m sure that had a lot to do with it,” O’Dell wrote me in an email.
This reluctance to talk has led many in the Deaf community to mistakenly believe that no loving Deaf parents would implant their own baby, which they see as a form of abuse—akin to making a gay child straight through surgery. As a result, individuals within close-knit Deaf communities rarely encounter these “traitorous” Deaf parents, let alone debate with them.
This discord stem from deafness’s dual—and dueling—status as both a disability and an ethnicity, says Trevor Johnston, an expert in sign language linguistics at Macquarie University in Sydney, Australia. Johnston is hearing, but grew up with deaf parents and many deaf relatives. “The loss of some deaf communities and their signed languages would be an unambiguous cultural and linguistic tragedy,” he wrote in a 2005 essay. Yet after weighing that tragedy against the nature of deafness, he reached a conclusion that most people outside of Deaf culture would probably agree with: “I, for one, could not try to guarantee the continuation of a culture and a language that are ultimately based on a disability.”
One cold Saturday night this past December, I visit the bookstore Before Your Quiet Eyes, which is tucked away in a gritty part of Rochester, New York. Around 20 people have gathered to watch Vicki Nordquist, a Deaf woman with broad shoulders and cropped brown hair. Nordquist begins her performance by signing “Can you all hear OK?” It’s a joke, of course, and I chuckle along with the others when an interpreter translates.
Nordquist rests her notes on a table in front of her and opens with a skit. “Each letter has its own personality. Did you know that?” She signs the letter A, a forward-facing fist, with her right hand, and then taps on it with her left hand as if to say, “move along now.” With her left hand, she signs the letter B, an open palm with the thumb folded over. B gives way to C, a cupped palm, and so on. Nordquist tells me afterwards that this sort of performance, where a single letter or word is animated with a voice and personality, is “a kind of poetry, like a haiku.”
Nordquist’s performance lasts for an hour or so and elicits hearty laughs, but much of the humor is lost in translation. I giggle along nervously. At one point, Nordquist calls on another hearing person—a friend I brought along—to read The Night Before Christmas while she signs. The two have trouble synching. Nordquist can’t hear and my friend can only sign the alphabet and a smattering of words. “Now you turn the page,” Nordquist directs her periodically. After my friend concludes with, “Happy Christmas to all, and to all a good night,” it takes a moment for Nordquist to catch up, lending the impression that they’ve performed the story in rounds.
Watching Nordquist I’m reminded of a time, years ago, when I was living in Japan. While I was there I attended a Kabuki performance, a traditional form of Japanese theater where actors tell a story through subtle, highly stylized movements. I found the performance entirely inscrutable, while my companion, an elderly Japanese man, watched with rapt attention.
After Nordquist’s performance, I chat with Laurie Monahan, a middle-aged woman clad in a purple tie and plaid vest. When Monahan was growing up in the 1960s and ’70s, her parents were told not to learn sign. She was thrust into hearing schools, where she understood nothing. “I was so isolated. I was abused and beat up by other students,” she tells me through my interpreter. “It was horrid. My childhood was terrible. I didn’t know who I was. I couldn’t communicate with my family. I couldn’t communicate with other kids.” When her parents finally sent her to a deaf school, she says, “I found that there were other people like me. I fell in love with ASL.” Recently, Monahan’s mother asked her if she would consider cochlear implants. Monahan was offended. “I’m happy,” she told her. “I’m finally happy.”
Amid the swirl of trade-offs that the Reids faced, they kept coming back to their fear of leaving Ellie disadvantaged—at the mercy of others, as Christine put it. It was this that led them to the Massachusetts Eye and Ear Infirmary in Boston one afternoon in September 2012. Christine was a wreck. “I remember our first appointment—I couldn’t figure out how the fuck to get to the hospital,” she says. She drove around in circles sobbing the whole time. “I’m like ‘Derek, this is not meant to be. We should not do this.”’ But when the Reids finally met with the surgeon and talked over their fears—especially the small chance that Ellie would be left with facial paralysis—they felt reassured enough to schedule the surgery. In February of last year, Ellie received implants in both ears. “I would rather Ellie be mad at us because we went ahead and did this without her permission, than for her to be mad at us because we never gave her the chance,” says Derek.
Soon after Ellie’s implants had been turned on, Christine was carrying her daughter on her hip outside the family’s home, a condominium that sits right next to Boston’s red T train line. On that spring day, as a train barreled past, Ellie whipped her head around and pointed in surprise. “Whoa,” Christine recalls thinking. “The surgery worked.”
By the time I visit the Reids one Friday morning this past September, Ellie is just over two years old and has had her implants for five months. She’s developed a fondness for the letter “m.” “Milk,” she says. “More.” She likes walking up and down the short hallway leading to the bedrooms muttering, “march, march, march.”
When I arrive, Ellie is watching Fraggle Rock in her pajamas, an indulgence Christine allows so that she can “practice hearing.” When the Fraggles exit the screen and the narrator comes on, Ellie gets her mother’s attention by grunting. Christine signs back “What’s wrong?” by hooking together the pinky and thumb on her right hand and tapping her chin. She furrows her brow to indicate that she’s asking a question. Ellie signs back, “More Fraggle Rock,” using the Reids’ homemade sign for the show: the sign for rock (a right fist knocking on the left fist), but with her right fist finger-spelling the letter “F”.
The Fraggles return, but it isn’t long before Ellie removes her processors, an indication that she’s done hearing. Prevailing wisdom says that children should use the implants during all waking hours, but Ellie gets to choose. Her audiologist doesn’t push the issue; she knows that the Reids’ goals for their daughter are atypical of most hearing parents, who yearn for their children to hear and speak above all else. “If she can learn to hear and speak then that’s great,” Christine explains. “And if she can’t then that’s fine, too. If she’s a signer, then she’s a signer.” Still, as we drive to the Learning Center, Christine tells me that she worries about her place in Ellie’s future. No matter how hard she and Derek try, or how fluent they become in sign, they can never be Deaf. “It’s hard because it’s a culture where”—she pauses. “We are not allowed, my husband and I—as supportive as we are, we can’t be culturally Deaf.”
After we arrive in the classroom, Christine leans down and places the external part of the implant—two magnetic circles—on a spot just above each of Ellie’s ears. We watch her play at the dollhouse while another kid cruises around the perimeter, his palms pushed flat against the walls for balance. The room is brightly lit, with blue-gray carpeting to cancel out background noise. In one exercise, a teacher, who is Deaf, asks everyone in the room—three children, their caregivers, a teacher’s aide, and an interpreter—to come together in a circle. She signs to each child to pick a flash card and describe it. William, an adorable 2-year-old with an unruly head of blond hair, chooses one with pictures of Ernie and Bert from Sesame Street. “Oh, you know who that is,” his dad says, in spoken English. The interpreter translates the father’s words for William. The boy wriggles with excitement and signs “Ernie” by “drawing” horizontal stripes on his shirt—his homemade sign for the character.
Before I leave, I take a tour of the school and pass through an atrium, where a photographic mural wraps around three walls. It is a rendering of Deaf history, assembled by the late Deaf artist Chuck Baird. Among other touches, Baird used different colored frames to interpret the events in the photos. I spot a gold frame containing a 1988 photograph of students at Gallaudet University, the country’s only deaf college, protesting the university’s decision to hire a hearing president. Within a week, the protesters had prevailed—and sparked wider reform. The Deaf President Now movement, as it came to be known, led to laws governing the use of subtitles on television, as well as other ways of providing deaf people with greater access to communications technology. On a wall across from the Gallaudet image large black letters spell “MILAN”, and below the letters hangs a photograph of a building—the location of the 1880 conference that so damaged deaf culture.
In a room at the Northeast Cochlear Implant Convention, a group of teenagers has just received a lesson in hula hooping. The kids fan out across the room to practice rotating their hips to the heavy bass of dance music. An instructor whirls silently through the crowd, her hoop moving from hip to arm to hip in one long, fluid motion. Despite cajoling from her friends, a girl, dressed in T-shirt and jeans, is too embarrassed to give it a go. But she seems flattered by their concern. Kids with implants, I’ve been told, love coming to this conference because they get to hang out with others like themselves. Most attend mainstream schools with few, if any, other deaf children.
The three-day event, held every summer near Boston, is the largest gathering of its kind in New England. Hundreds attend: families of kids with implants, adults with implants, parents considering whether to implant their deaf babies, state and hospital staff hawking packets of information, and representatives from all the major cochlear implant companies. At one booth, an implant company called Advanced Bionics touts its latest breakthrough—waterproof implants—by giving out bright yellow rubber duckies.
On my first evening there, I meet Rachel Chaikof, a petite woman with thick, dark hair that hides her processors. Chaikof is celebrated in the cochlear implant world. In 1989, when she was two and a half, she became one of the youngest implant recipients in the world. Her hearing parents declined to learn sign language and taught their daughter to talk through aggressive speech therapy. Today, Chaikof speaks almost naturally and is fluent in French. On her website, Cochlear Implant Online, Chaikof writes: “Every morning for the first few weeks, when I was a rough little three-year old child, my mother had to sit on me in order to get the magnet on my head [that enabled the cochlear implants to work]. I know that sounds cruel of my mother, but I am grateful to her for doing this because she has taught me that it is unimaginable to live in a silent world.”
Yet silence has a way of creeping up on those with implants. Later that evening, I stay up late talking to a group of people who grew up hearing but went deaf as adults. We’re seated in the main hall of the convention hotel, just out of sight of people playing in the pool. Hearing devices are notoriously sensitive to background noise, and my companions are having a hard time hearing over the splashing. Chairs are moved as people stake out spots across from the person speaking so that they can lip read. I ask the man next to me how good his comprehension is. He has me repeat the question three times. With a wry laugh, he finally replies: “It’s about a hundred percent.”
At lunch the following day, I meet Jennifer Colamedici, the hearing mom of a 12-year-old boy who was implanted at the now relatively late age of three. He’s doing great academically, she says, but socially he’s struggling, which Colamedici attributes to the fact that he’s the only deaf kid in his grade. “Sometimes,” she says, “we think to ourselves, ‘Who is he going to take to prom?” Colamedici has been considering putting him in a sign language class to see if that helps him find a niche.
Historically, a kid like Colamedici’s would have started his journey to a Deaf identity at a school for the deaf. But these schools have faded as budgets have been cut and children with hearing loss redirected to mainstream schools. Many deaf people I’ve spoken to believe that Deaf culture will persevere nonetheless. Implanted children will seek out the Deaf community on their own, they say, and kids with cochlear implants will go to college, study sign, and gravitate toward each other. It may simply take longer than in years past. I’m skeptical, though. When I leave the convention, the day is warm and several teens with implants are tossing a Frisbee around the hotel parking lot, yelling back and forth to each other. It’s hard to picture these kids, who have little or no exposure to sign and whose friends and family are almost all hearing, embarking on that arduous journey to becoming Deaf.
After returning home, I can’t help but wonder if I’ve witnessed the beginning of the end of Deaf culture. Clearly implants are already lessening the use of sign. And perhaps that will be enough to destroy the culture itself. It wouldn’t be the first time a language and a culture has died. In most cases, those languages don’t die a natural, painless death, says Tove Skutnabb-Kangas, a linguist at Åbo Akademi University in Finland. Instead they are murdered, often by the educators who decide the medium of instruction. The relationship between signed and spoken languages is particularly fraught, because spoken languages are always more widely used, and so easily trample local sign languages. And a child who grows up estranged from her mother tongue, says Skutnabb-Kangas, will forever struggle to return home.
Deaf culture may find itself pushed to the margins, surviving only where implants are not widely available. Aaron Kelstone, who directs the performing arts program at the National Technical Institute for the Deaf in Rochester, pointed out to me that one percent of the world’s population is born with profound hearing loss—meaning thousands of deaf people enter the world every day. There’s no chance that everyone will receive an implant, at least not yet. So Deaf culture may wane in North America and Western Europe, and flourish in places like Africa, Southeast Asia, and Central America. It may become a condition—and a subculture—of the world’s poor.
By Skutnabb-Kangas’s definition, Bill Corwin and his wife, Jennifer Rosner, are guilty of abetting linguicide. Corwin, who is hearing, is a former lawyer and current president of the Clarke Schools for Hearing and Speech, which is headquartered in Northampton, Massachusetts, and has satellite campuses across the East Coast. I meet Corwin and Rosner (also hearing), at a café on a warm day in August. They’ve brought their 13-year-old daughter Sophia, who wears hearing aids, and their 10-year-old daughter Juliet, who was born profoundly deaf and implanted at age one. Nobody in the family is proficient in sign.
Over cookies, Corwin and Rosner tell me about wanting to keep their family unified. “The thing that gets lost in the whole conversation is the intimacy between parents and children in this scenario,” says Rosner. Sharing complex thoughts would be difficult if the children relied on sign, and the parents on speech. “And what does that do for relationships? That’s what I find just astonishing about this debate. Just because they’re born with some genetic [issue] then somehow they should have a different language and culture. It’s amazing.”
Rosner, who’s written a memoir called If a Tree Falls: A Family’s Quest to Hear and Be Heard, says that their choices have generated nasty feedback, an example of which I stumble across in an article she wrote about Juliet and Sophia for the New York Times. “Hearing parents of Deaf children should be tried and convicted of child abuse and neglect,” reads one comment. “And the Deaf child should be given to Deaf parents for adoption.”
When they were younger, Juliet and Sophia went to preschool at Clarke, where the focus is on helping deaf children prepare for the hearing world. Today, both girls go to mainstream private schools, although they receive some occasional support. To tune out background noise, for instance, their teachers wear radios that channel speech directly to the girls’ sensory devices. During class discussions, the students pull their chairs around the receiver.
A few weeks after our discussion at the café, I meet with Corwin one-on-one. I ask him if he’d have done things differently if his girls had been born before implants became widely available. Juliet’s hearing loss is so profound that he would not have thrust her into the hearing world, he says. Without implants she would have been a signer.
Yet, as we walk to our cars, Bill adds that he still worries about Juliet. Because she can’t hear without her processors, she’ll always identify as deaf—without a capital D. But without sign, she cannot be part of the Deaf community. For Corwin, though, the onus is on the Deaf community to evolve, to learn to accept the growing number of deaf people like Juliet, who speaks so fluently that her deafness, at least to an outsider, is completely masked. What that translates to in reality is far from clear. Sign is the linchpin of Deaf culture. Remove it and a community will undoubtedly remain, but perhaps it will be akin to communities for quadriplegics or cancer survivors. And it would be a stretch to say that those communities have their own cultures.
On my last visit to the Reids, we eat pizza in their dining room while the Boston trains rumble by. Ellie, her processors out for the evening, devours an entire meaty slice. After dinner, she curls up on Christine’s lap. They sign their way through the book Learn your ABCs with Elmo and Friends, before Derek and Christine tuck her into bed.
Sitting in the living room while Ellie sleeps, I confess to Christine and Derek how dispirited I’ve been feeling about the future of Deaf culture. So many families have already opted out. And those who do sign often rely on a mishmash of sign and spoken language—informal hybrids that will likely make it difficult for their children to fit in with the culturally Deaf. Christine likens the state of sign language to Hebrew. “In America, are random Jews walking around speaking Hebrew to each other? They’re not,” she says. “But it’s revered in their communities.”
I counter that children are born into Jewish culture, as were their parents and their parents’ parents. Deaf kids, on the other hand, often have to find it. And now, with cochlear implants, they have less incentive to do so.
“I don’t know. I don’t know,” Christine says, turning the conversation from the philosophical to the practical. “We’re not trying to save the whole culture. We’re just trying to allow her to be a part of it. That’s it.”
The Reids didn’t choose to have a deaf daughter, or to be thrust into an alien culture. They know that Ellie might choose a world that’s beyond their reach. The best Christine and Derek can do is to give Ellie access to her Deaf heritage—a sanctuary, should she need it, from a hearing world in which she may never feel fully at home. And if they help keep Deaf culture alive, then all the better.
Before I leave, Christine and Derek invite me to join their nightly ritual: peeking in on Ellie as she sleeps. She is curled up on her side. The yellow Air Supply poster glows faintly behind us. Watching Ellie, it’s hard to imagine what she’ll be like as she grows up. Right now she’s just a toddler who likes sparkly shoes and tall slides and terrorizing the family cat. But what about later? What kind of path will she take through life, and will it involve her Deaf heritage?
“Isn’t she cute,” Christine says, before we leave the room.
“Yeah,” says Derek, and jokes, “We really should have another baby.”
The two of them laugh so loudly that I want to shush them. But then I remember that Ellie sleeps without her processors. Her implants are turned off. For now, she is safe in the silence.
This story was written by Sujata Gupta, edited by Mike Kessler, fact-checked by Kyla Jones, and copy-edited by Tim Heffernan. Art direction was by CDGD, photography is by Jared Leeds, and Jack Stewart narrated the audio version.