In the end, Barbara became a champion of Deaf culture. “I didn’t embrace it for a long time,” she said. “Now, I meet parents, and I say, ‘Look, learning ASL is the hardest thing you will ever do in your life. You will never be good enough. You will still not understand your kid, and you will still not always be able to communicate what you want to say.’ That’s the truth and it’s not easy.”
When I met her, Barbara had become the head of family services for the deaf at a local university. Nick and Brittany are much less interested in Deaf activism than she is. Nick had announced that the best thing he could do for deaf people was to go out into the world and work and become himself. This is just fine with Barbara, who worked hard to give her children that confidence. “The Deaf community fills them up with pride, and then they don’t want to let them go,” Barbara complained. “A kid will be raised in a deaf school. He will go to Gallaudet. Then he will come back to the deaf school and teach. So their knowledge of the world is this. They bring nothing new and nothing diverse.” Barbara got her kids enrolled at Northridge instead, where there is a strong Deaf studies program and a large Deaf population.
Both children have made strong showings in written English. While Nick makes little use of vocal language, Brittany decided in college that she was going back to speech therapy and has been thinking about getting an implant. She wants to work in film production, and she wants to be comfortable in the hearing world. “She wants to make it as easy for hearing people as she can,” Barbara said. “Brittany has a lot of speech. The problem is, she is embarrassed to use it. She has an interpreter at college, who said to her, ‘You shouldn’t talk, because deaf people sound horrible when they talk.’ So she’s sending my husband e-mails saying, ‘Does my voice sound horrible?’ This is an interpreter, her lifeline to communication. If I saw this woman, I would probably choke her.” Brittany has been concerned about how her Deaf friends would react to her getting an implant. “So what does she do?” Barbara said. “Does she give up her dreams and settle? Or does she get this implant if it will make it easier to get her dream job? They’re deaf in a hearing world, that’s the reality.”
Barbara worries about her children in that world, but she has no regrets. “If my kids were hearing, my daughter and I would not have gotten along,” she said. “We are two strong personalities. My son would have gotten into so much trouble. If I’d had hearing kids, I would have worked and they would have gone to child care. Having deaf kids made me a much better mother. I like fighting for the cause. I like empowering people. We get along really great, the bunch of us, we really do. I hope they have deaf children. I want them to have kids who are just like them.”
• • •
Deaf people in the hearing world are always going to be at a disadvantage. So the question is whether people prefer to be marginal in a mainstream world, or mainstream in a marginal world, and many people quite understandably prefer the latter. At the same time, those who oppose cochlear implants—and who, in some cases, oppose hearing aids and other technologies—are a noisy bunch, which has often led people to universalize from their views. In fact, these views can be constraining. “There seems to be subtle pressure from some Deaf people to give up hearing aids—sort of a Deaf-liberation equivalent to bra-burning,” wrote Kathryn Woodcock, a Canadian deaf woman. “There is prejudice in the Deaf community against any form of listening. At this point in my progressive hearing loss, I can usually still hear a firm, multiple knock on the door of a quiet room. This has earned me suspicious glances and even overt queries as to why I am present in a deaf group. This is absurd.” The commentator Irene Leigh has written, “While I perceive myself as sufficiently competent in Deaf ways and as capable of participating within Deaf culture, I can also communicate adequately with users of spoken English. Because of this, I have at times been labeled as ‘hearing-mind,’ not truly Deaf.”
Josh Swiller, a deaf man raised in the hearing world and educated orally, came to Deaf identity late and has written about it beautifully. He used hearing aids and other devices. “Basically, with aids you’re constantly translating every line of language into itself. Like the high school sophomore at the college bar with a great fake ID, I could fool everyone into believing I was who I pretended to be. It gnawed at me that this way of navigating the world was based on a fundamentally untenable position, a two-sided lie. To others: I can hear you; to myself: it doesn’t matter how much I miss or how alone I feel as long as others think I can hear. It drove me crazy. I kept doing it, it was all I knew.” Swiller made his way to Gallaudet. Soon after he arrived, a school newspaper poll asked whether students would take a pill that would give them hearing instantly, and the majority answered that they would not, because they were proud of who they were. Swiller wrote, “But who are we? I wanted to know. Who looks out from our eyes?” Years later, he posted a short biography of himself on his website with this description: “In 2005, Josh had surgery for a cochlear implant. The implant has been a remarkable success. He also, with great pride, uses American Sign Language. He rejects the defensiveness and distrust that divides the deaf community and believes that our similarities should—and will—overcome our divisions.”
• • •
While the debate rages over cochlear implants, implantable hearing aids and other assistive devices for hearing loss continue to be refined and developed. In parallel, research into biological, nonprosthetic cures for deafness has blossomed. There are many kinds of hearing loss, but most come from the loss of the auditory hair cells in the cochlea. These cells, which receive sound in a form in which it can be conveyed along nerve pathways to the brain, are produced in the first three months of the fetal period and are incapable of regenerating—or so conventional wisdom long assumed. In the early 1980s, however, Jeffrey T. Corwin, now at the University of Virginia, noticed that adult sharks have a greater number of receptive hair cells than baby sharks, and subsequent research demonstrated that fish and amphibians produce hair cells throughout life to replace those that have been lost. A few years later, Douglas Cotanche, director of the Laboratory of Cellular and Molecular Hearing Research at Boston University, discovered that baby chicks whose hair cells were completely destroyed by ototoxic poisoning or sound trauma regenerated hair cells. Tests confirmed that these chicks had recovered hearing. These discoveries led researchers to investigate whether such processes could be achieved in human beings.
In 1992, researchers in Corwin’s lab fed retinoic acid to embryonic mice; the mice were born with six or nine rows of hair cells, rather than the usual three. Building on this work, in 1993 a group working at Albert Einstein Medical Center published an article in Science in which they described their success at causing the regrowth of hair cells by treating the damaged inner ear of an adolescent rat with a mixture of retinoic acid and calf serum. Since most deafness is degenerative (even those born deaf have usually lost auditory hair cells in utero), the question remained whether the new hair cells would survive in the inner ear, or whether they would die off again as their predecessor cells had done.
Hinrich Staecker, a professor of otolaryngology at the University of Kansas, is now trying to determine what is necessary for the neuritic stem to grasp on to a hair cell—the process through which the response of the cochlea is transmitted to the brain. In the late 1990s, burgeoning insight into stem cells inspired inquiry into how they might be made to differentiate into auditory hair cells and then be introduced into the inner ear. In 2003, Stefan Heller and his colleagues successfully cultivated auditory hair cells from mouse stem cells. Six years later, a team at the University of Sheffield demonstrated that human fetal auditory stem cells could be cultivated in vitro, and that they would develop into either functional auditory neurons or hair cells; treating the cells with retinoic acid helped this occur.
Genetic research into deafness, which has so angered the Deaf community because of its relevance to selective abortion, is not primarily focused on pregnancy termination. Scientists are hopin
g to develop gene therapies to promote the growth of auditory hair cells, both in utero and postnatally. With the identification of the ATOH1 gene as essential to the development of auditory hair cells, researchers have focused on developing therapies to introduce and induce the expression of ATOH1 in animals, and to inhibit processes that damage existing cells, including oxidative stress, which appears to be a major contributor to age-related hearing loss. Other currently targeted genes control the function of the transduction channel that conveys messages from the auditory hair cells to the brain.
Technologies now in the works include the implantation of electrodes that stimulate hearing nerve fibers, the miniaturization of implant technology, fully implantable cochlear devices, and implantable hearing aids.
• • •
In the early 1960s, a rubella epidemic in the United States resulted in a high incidence of deaf children; this generation, currently in midlife, is called the Rubella Bulge. Vaccines now protect most expectant American mothers from rubella, and most children from rubella and meningitis. The deaf population diminishes. Cochlear implants mean that a large proportion of deaf children are functioning in the hearing world. “From the time God made earth until today, this is probably the best time to be deaf,” Greg Hlibok said at the Lexington graduation; yet this is also the moment when the deaf population is dwindling. As it gets better and better to be deaf, it also gets rarer and rarer. Parents cannot understand their deaf child’s future by talking to deaf adults, because those adults grew up in a vanished context. Parents who do not implant their children today are choosing a shrinking world. The Deaf movement was born in its modern form only when Stokoe recognized the linguistic complexity of ASL in 1960; some say that its demise commenced when implant surgery received FDA approval in 1984. Patrick Boudreault said, “We are still looking for answers to our own questions. Who we are, for example. What does language mean to us. How does the world interact with deaf people. We’re just making these discoveries, and now we’re under pressure.” Christina Palmer said, “Eugenics and multiculturalism are head-to-head.”
In 2006, a group of Deaf people proposed the founding of a Deaf town, in South Dakota. It was to be called Laurent, after Laurent Clerc, and its anticipated initial population was twenty-five hundred. The man behind the plan, Marvin T. Miller, said, “Society isn’t doing that great a job of quote-unquote ‘integrating’ us. My children don’t see role models in their lives: mayors, factory managers, postal workers, business owners. So we’re setting up a place to show our unique culture, our unique society.” The local county planning commission refused to approve the proposal, and it eventually fell apart. The people of South Dakota reacted to the idea of a deaf town much as a white suburb of the 1950s might have reacted to news of a black one. But even the deaf had rather mixed feelings. Deafweekly.com wrote, “Some question the need for such a town, saying such ‘isolation’ has gone out of fashion.”
It is difficult to imagine the same being said about Bengkala, because that community has developed intergenerationally. It may be perceived by mainstream society as a community of the deficient, a hereditary error writ large. But it is clearly not artificial, and that is because it is vertical. The vertical is deemed natural, and the horizontal, unnatural. Implants come to seem more “natural” than deafness to hearing people such as Felix Feldman; resisting them seems like the artifice. As that perception takes hold, more people get implanted, leaving fewer to make up the marginal culture, creating more pressure to get implants, and so on until few people are left to populate the Deaf world. The loss of Deaf culture would be a great sadness; preventing any individual child from getting implants could be considered cruel. By narrowing a child’s options, parents define that child as an extension of themselves, rather than a person of his own. Yet implants may compromise the option of being content in the Deaf world. As any identity becomes a choice, it is irrevocably altered, even for the people who choose it.
For many years, the defining means of deaf life was in-person socializing at deaf social clubs—now largely vanished as deaf people are able to communicate online. The deaf used to congregate at the Deaf theater—but with the advent of captioned television and film, the imperative to do so has faded. Is Deaf culture to be defined simply as a function of a shared language used for in-person interactions?
Just as Deaf culture is being forced to assimilate to the mainstream, mainstream culture is assimilating the Deaf world. As many as two million Americans know ASL. The early years of the new millennium saw a 432 percent increase in ASL courses. This made ASL the fifth most taught language in college, and the fifteenth most taught in the general population; a broad population has been bewitched by the perceived poetry of a physical communication system. While teaching Sign to deaf babies is less common in the age of cochlear implants, hearing babies are being taught Sign because they can make use of it before they have the oral muscle control to speak. More hearing people are applying to Gallaudet. Deaf people are ambivalent about all this. They note that the language has separated from the culture, and that many of the students learning it know nothing about Deafhood, a fashionable word for the deep experience of Deaf values. Edna Edith Sayers, a professor of English at Gallaudet, referring to ASL classes taught outside the academic context, noted, “Somehow, ASL’s popularity has come at the cost of demotion to some kind of craft or hobby, like quilting or aerobics, taught by volunteer enthusiasts in church basements.”
I am fully persuaded that there is a Deaf culture; I am persuaded that it is a rich culture. What social obligations are attached to recognition of a culture? Can we confer on it a societal equivalent to the landmark status with which we mark buildings that are never to be destroyed? Talk of Deaf lineage is fine insofar as any given child and his parents accept it. But we will never have a society in which children are routinely taken from their parents and given to another group of people to raise. The 90 percent or so of deaf children who are born to hearing parents will continue to be brought up as those parents see fit. If the cochlear implant is improved, if gene therapies advance so that children can effectively be cured, then cures will triumph. Vertical identities will go on forever, and horizontal ones won’t. Harlan Lane wrote in outrage, “The relation of the hearing parent to the young deaf child is a microcosm of the relation of hearing society to the deaf community; it is paternalistic, medicalizing, and ethnocentric.” This is true, but Lane seems not to recognize that parents have definitional license to be paternalistic. While it may be difficult for deaf people to learn speech, it is also difficult for parents to learn Sign—not because they are lazy or smug, but because their own brains are organized around verbal expression, and by the time they are of parenting age, they have lost considerable neural plasticity. Parents implant their children in part so that they can communicate with them. They may be wise to do so; intimacy between parents and children is one of the cornerstones of mental health for both parties.
The cochlear implant debate is really a holding mechanism for a larger debate about assimilation versus alienation, about the extent to which standardizing human populations is a laudable mark of progress, and the extent to which it is a poorly whitewashed eugenics. Jack Wheeler, CEO of the Deafness Research Foundation, has said, “We can conquer newborn deafness in America. If we can test every baby born and organize the parents as a political force so every baby gets what it needs, regardless of how much money the parents have, then the twelve thousand babies born deaf every year become twelve thousand babies who self-identify as hearing kids.” The question is whether this is desirable. A race is going on. One team consists of the doctors who will make the deaf hear. They are humanitarian miracle-workers. On the other team are the exponents of Deaf culture. They are visionary idealists. Yet each would render the other irrelevant. As Deaf culture grows stronger, it is dying. “Deafness is almost always one generation thick,” declared Lawrence Hott and Diane Garey, directors of the film Through Deaf Eyes; some scholars have called Deafness
a “culture of converts.”
“In a world full of childhood cures,” said Rob Roth, whom I met at the NAD, “I would be neither deaf nor gay. That doesn’t make me feel unloved or bad about myself, but I know that it’s true.” If Deaf culture can be made as visible, powerful, and proud as gay culture now is before the cure is perfected, then perhaps the accomplishments of the Rubella Bulge activists will allow for a long history of Deaf culture. If the cure comes before that happens, then virtually all hearing parents and many grassroots deaf parents will cure their children, and the tremendous accomplishments that have followed the Gallaudet uprising will be the conclusion rather than the beginning of a story. Then the history recounted here will be as poignant and remote as a tale of Babylon. Jacob Shamberg, who had taken part in the Gallaudet protests, wrote to me, “While I’m pretty comfortable with my disability and don’t see CI as an evil force intent on destroying the Deaf culture, I do get a sense of impending extinction. There’ll always be deaf people worldwide, but there is a real possibility that it’ll be near-eradicated in developed countries within 50 to 100 years. I say ‘near’ because there’ll always be immigrants, untreatable conditions, cultural hold-outs and so on. But no more people like me.”
Would the world be better with more cultures in it? I believe it would. In the same way that we mourn the loss of species, and fear that reduced biodiversity could have catastrophic effects on the planet, so we should fear the loss of cultures, because diversity of thought and language and opinion is part of what makes the world vibrant. Commenting on the death of tribal languages and traditional storytelling in West Africa, Amadou Hampâté Bâ, a Malian ethnologist, said, “When an old person dies, it’s a library burning down.” And yet what is happening to the Deaf has happened also to the Quakers, to Native Americans, to whole tribes and countries. We live in an incinerator of cultures. It is estimated that by the end of this century, fully half of the six thousand languages currently spoken on earth will have vanished. The Tower of Babel is collapsing. With those tongues will go many traditional ways of life. The Australian linguist Nicholas Evans wrote of the urgency of finding “a new approach to language and cognition that places diversity at centre stage,” pointing out that we are “the only species with a communication system that is fundamentally variable at all levels.” The Deaf will vanish along with many ethnicities, their languages along with many languages.
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