Copyright © 1994 by The New York Times Company. Reprinted permission by New York Times and Andrew Solomon.
Deaf Activists Live, Proudly, in a Different Culture, but Not a Lesser One. A Cure May Be Near--and Some Might Not Even Want It.
The protests at the Lexington Center, which includes New York's oldest Deaf school, are an important stage in the Deaf struggle for civil rights, and on April 25, the first day of student demonstrations, I ask an African-American from the 11th grade whether she has also demonstrated for race rights. "I'm too busy being Deaf right now," she signs. "My two older brothers aren't Deaf, so they're taking care of being black. Maybe if I have time I'll get to that later."
A Deaf woman standing nearby throws in a question for my benefit: "If you could change being Deaf or being black, which would you do?" The student looks confused, and is suddenly shy. Her signing gets smaller, as though she doesn't want everyone to see it. "Both are hard," she signs back.
Another student intercedes. "I am black and Deaf and proud and I don't want to be white or hearing or different in any way from who I am." Her signs are pretty big and clear. The first student repeats the sign "proud"--her thumb, pointing in, rises up her chest--and then suddenly they are overcome with giggles and go back to join the picket line.
This principle is still new to me, but it has been brewing in the Deaf community for some time: while some deaf people feel cut off from the hearing world, or disabled, for others, being Deaf is a culture and a source of pride. ("Deaf" denotes culture, as distinct from "deaf," which is used to describe a pathology.) A steadily increasing number of deaf people have said that they would not choose to be hearing. To them, the word "cure"--indeed the whole notion of deafness as pathology--is anathema.
My guide here is Jackie Roth, one of the protest's organizers--a Lexington alumna, an actress and an advocate with a practice in cross-cultural sensitivity training for hearing people. Charismatic, self-assured and sharp, she has excellent oral skills and lip-reads well. She speaks and signs simultaneously, which has made her a natural for communicating with the hearing world, and, therefore, an object of suspicion among the Deaf (a position made more difficult by the fact that she has, like many influential Deaf leaders, a hearing spouse). She is unyieldingly ambitious.
"I'm Deaf of Deaf," she says. "I've always said that I'd get to the top and open as many doors as I could for the whole Deaf community. Every deaf child should know he can do anything except hear." Since 90 percent of deaf children are born to hearing parents, Deaf of Deaf carries a certain exclusivity and prestige: Deaf of Deaf have usually grown up understanding from an early age the issues that other deaf people may not take on until much later in life. "My father was a dreamer. If he hadn't been deaf, he would have done big things. His family was so ashamed of his being deaf. My mom was a pragmatist, but my father used to say I could do anything. If I said I wanted to be a singer, he never said, `Deaf girls can't.' He just told me to sing."
With time, I will learn how unusual such attitudes are. "When I mentioned a deaf dentist to my deaf mother," the superintendent of Lexington, which is located in Jackson Heights, Queens, tells me, "she said, `How good a dentist can he be if he's deaf?'" A powerful sense of self is, for most empowered Deaf, a product of the last 10 years. "My dad worked his whole life in a factory, printing," Jackie says. "It's one of those traditional deaf trades. The machines are so loud you can't talk anyway; if you're already deaf you won't sue when you lose hearing from the noise. Dad had to settle for that. It was the 40's, about as low a time as there was for being deaf in America. He told me never to settle." In Deaf culture, everyone begins with family and school history, then leads back to the topic at hand; it's part of the structure of intimacy I will encounter here. "Lexington isn't going to settle either," says Jackie.
An hour after I meet the two proud students, I attend a meeting between the nine-member core committee that organized this protest and the chief executive of the school. Jackie opens, "We do not accept the process by which a new C.E.O. has been named this week to the Lexington Center for the Deaf," she says. "We would like him to resign, and for a new search process to take place." Every detail of the baroquely complex search process is called into question. They want to oust the new chief executive, R. Max Gould, who would oversee the component institutions of the Lexington Center. Most would like to replace him with a Deaf candidate, but whether the new chief executive is Deaf or not, they want him to be approved by the Deaf community.
The center's director of public affairs says that the protests will peter out soon, that students just want an excuse to miss classes, but that is not my impression. "There are no Deaf role models at Lexington," Jackie tells members of the press four days later as the marches continue. Her signs, like her voice, are impatient, quick, funny and fluid. "Few Deaf teachers and even fewer Deaf administrators." The protesters--mostly Lexington students--watch closely. Some are wearing big placards: "The Board Can Hear but They Are Deaf to Us" and "Board Who Can Hear Don't Listen. Those Who Can't Hear Do Listen." Some are wearing "Deaf Pride" T-shirts or buttons. Individuals climb a low wall so everyone can see their rallying cheers, and the crowd chants back to them, many hands moving in repeating patterns.
The faculty representatives to the core committee--Maureen Woods, Jeff Bravin and Janie Moran--are especially vigilant. "Do you think the protest will work?" I ask. Maureen's signing is methodical and impressive. "There is no choice," she says. "It must work." Jeff interrupts. "The pressure has been building, maybe since the school was founded in 1864. Now it's exploding, and nothing can stop it."
A few days later, at another protest, Jeff and his grandmother chat congenially. "My father and my grandfather went to Lexington," Jeff says. "I am Deaf of Deaf of Deaf. We're ready to take what should be ours." Jeff is 25, a member of the "rubella bulge." In the early 60's, a rubella epidemic resulted in a very high incidence of deaf children, and they have made up most of the leadership of the Deaf Pride movement.
Concurrent with these protests, Jackie is giving a performance in the New York Deaf Theater's adaption of "The Swan." The play describes how a deaf woman of great passion (Jackie) leaves her hearing lover and finds true love with the Swan, who enables her imagination. The lover uses signed English as he speaks; the Swan begins with no language but learns perfect American Sign Language (A.S.L.), the language of the American Deaf, which has its own syntax. Signed English, the use of word signs in English-language word order, is not actually a language at all; cumbersome and slower-placed, it is often used when hearing and deaf people interact. For Jackie's character, love is a liberation from the limitations of hearing culture. As her language, which had suffered the cramp and limitation of her lover's English-oriented signing, opens up into the bodily richness of the Swan's pure A.S.L., she discovers her Deaf self and becomes free.
"I didn't learn real A.S.L. until college," says Jackie, "and what a spreading of the wings it was when it happened! Lexington's tradition of arrogant oralism--they've got a lot to make up for." That Jackie should take so strong a stand against oralism--a philosophy that the deaf should learn to speak like hearing people--is striking, since she is an oral "success story," a woman who can carry on a spoken conversation with little apparent difficulty, who could, if she wanted to, pretty much pass for hearing and who is sometimes dismissed by Deaf purists as "not really Deaf." When Lexington was founded as the first great bastion of oralism in America, it was the idealist wish of hearing people to teach the deaf to speak and read lips so they could function in the "real world" from which they had been excluded. How that dream went horribly wrong is the grand tragedy against which modern Deaf culture has constructed itself.
WORDS, WORDS, WORDS
The story of the Deaf is the history of Deaf education, and is recounted in Harlan Lane's "When the Mind Hears," then analyzed in his "Mask of Benevolence." These are the seminal texts of the Deaf movement. In 16th-century Spain, for example, only those who had given confession were allowed to inherit property or title, so inbred noble families undertook the oral education of their deaf children. But it was more than 200 years before the Abbe de l'Epee pursued a vocation among the poor deaf of Paris, learned their manual language and used it to teach written French, so freeing the deaf from their prison of illiteracy and isolation.
In 1815, the Rev. Thomas Gallaudet of Connecticut traveled to the institute founded by de l'Epee in Paris, and persuaded Laurent Clerc, a teacher, to accompany him to America to establish a school in Hartford in 1817. A golden age for the American deaf followed. Clerc's French sign language mixed with indigenous American signs and a dialect used on Martha's Vineyard (where there was much hereditary deafness) to form American Sign Language. Deaf people wrote books, entered public life, achieved. Gallaudet College was founded to provide the highest advanced education to the deaf and is still the world's only Deaf university.
In "Seeing Voices," Oliver Sacks suggests that once the deaf were seen to function so broadly, it was natural that they should be asked to speak. Alexander Graham Bell led the oralist movement, which culminated with the dread Congress of Milan in 1880 and an edict to ban the use of sign. The insistence on teaching English only (which prevailed until the 1980's; "I got my hands rapped if I signed," Jackie recalls) served not to raise deaf literacy, but to lower it.
Forbidding sign turned children not toward spoken English, but away from language. "We felt retarded," Jackie says. "Everything depended on one completely boring skill, and we were all bad at it. Some bright kids who didn't have that talent just became dropouts." Even those who developed pronunciation lost out. "History lessons," Jackie says. "We spent two weeks learning to say `guillotine' and that was what we learned about the French Revolution. Then you go out and say `guillotine' to someone with your deaf voice, and they haven't the slightest idea what you're taking about--usually they can't tell what you're trying to pronounce when you say `Coke' at McDonald's."
Learning was supposed to happen through lip reading, a remarkably inexact science; most lip movements are associated with more than one sound, and the lip reader must guess and intuit in order to make sense of what is being said. "Pat, mat, bat," Jackie mouthed. "Now, did I say the same word three times or did I say three different words?" For someone who already speaks English--someone deafened postlingually--the technique can be developed, but for someone with limited English, it is an excruciating endeavor. "Socially or in secret," Jackie says, "we always signed. No theory could kill our language."
Though at least 30 percent of deafness is genetic, more than 90 percent of deaf children are born to hearing parents. So most deaf children enter families that neither understand nor know their situation. They must identify in their peer group; they are first exposed to Deaf ways in school. When you meet a deaf person, his school is a primary mode of self-identification; it's usually told after his name but before his job. "Lexington" and "Gallaudet" were among the first signs I learned.
The Deaf debates are all language debates. "When I communicate in A.S.L., my native language," M.J. Bienvenu, a political activist, said to me, "I am living my culture. I don't define myself in terms of `not hearing' or of `not' anything else." A founder of the Bicultural Center (a sort of Deaf think tank), M.J. is gracious, but also famously terrifying: brilliant, striking-looking and self-possessed, with signing so swift, crisp and perfectly controlled that she seems to be rearranging the air in front of her into a more acceptable shape. Deaf of Deaf, with Deaf sisters, she manifests, like many other activists, a pleasure in American Sign Language that only poets feel for English. "When our language was acknowledged," she says, "we gained our freedom." In her hands "freedom"--clenched hands are crossed before the body, then swing apart and face out--is like an explosion.
The fact that A.S.L. is a full (though not written) language, with a logical internal grammar and the capacity to express anything that can be expressed verbally, eluded scholars until William Stokoe published his ground-breaking "Sign Language Structure" in 1960. This became the basis for the Deaf activism of which Lexington's is the most recent example. "To establish the validity of A.S.L.," Stokoe says, "we had to spend a long time dwelling on how it resembles spoken language. Now that the validity of A.S.L. has been accepted, we can concentrate on what's interesting--how the life perceptions and experiences of a native A.S.L.-user will differ from the perceptions and experiences of hearing people." Or, as M.J. put it, "There are many things that I can experience for which you have no equivalent."
Perception of A.S.L. uses the language center of the brain more than the visual-emotion center. Deaf children show no predisposition to spoken language; they respond intuitively to sign, and acquire it exactly as hearing children acquire spoken languages. During the critical period for language acquisition-- at its height between 18 and 36 months, dwindling around 12 years --the mind can internalize the principles of grammar and signification. This paves the way for human thought. (There is no rich abstraction without words.)
Once you have learned one language, you can go on, at any age, to learn more or other languages. Spoken-written language can readily be taught to the deaf as a second language. But to bring up deaf children without sign models is terribly dangerous. Though some remarkable ones acquire English through lip reading and residual hearing with constant attention, more often deaf children without exposure to sign bypass the key age for language acquisition without really acquiring any language at all. Once that happens, they frequently fail to develop full cognitive skills; they may suffer permanently from what has been described as a preventable form of mental retardation.
Helen Keller famously observed that being blind cuts people off from things, while being deaf cuts people off from other people. Poor communication skills result in psychosis; the National Institutes of Health had a workshop this June on the link between poor hearing (nonsigners) and violence. Deaf of Deaf learn sign as a first language at home and are often surprised to discover that other systems of communication are used elsewhere. For the deaf children of hearing parents, school is often the place where they first encounter sign. It is not just social or intellectual stimulation that school may provide; when it is the beginning of language, school is the first awakening of the mind. As I slide deeper into Deaf culture by way of the Lexington protests, I see how a language has defined a system of thought-- and I begin to imagine what M.J. may be able to experience that I may not.
THE BEST TIME TO BE DEAF
On Monday, May 2, the demonstrators go to the Queens Borough President's office. It is a beautiful, sunny day, and the demonstration, though still in deadly earnest, has that air of festivity that clings to anything for which people are skipping work or school. Jackie Roth is holding forth, and so are a variety of distinguished Deaf leaders. And Greg Hlibok, a leader of the Deaf President Now movement, is expected.
In March 1988, Gallaudet University, the center of American Deaf culture, announced the appointment of a new president. Students had rallied for the school to have its first Deaf president, but the chairman, remarking that "the deaf are not yet ready to function in the hearing world," announced that a hearing candidate had been selected.
In the following week, the Deaf community as a political force came abruptly into its own. The movement that had begun with Stokoe's validation of A.S.L. took its next great leap forward. The Deaf President Now movement made it clear that the Deaf community was able to function at any level it chose. In a week, they closed down the university, won substantial coverage in the media and staged a march on the Capitol with 2,500 supporters. The chairman resigned, and her place was taken by Jeff Bravin's father, Phil Bravin (who is also on the Lexington board). The board immediately named the first Deaf president of Gallaudet, I. King Jordan. Late-deafened in a motorcycle accident at 21, King Jordan is the most unaffectedly bicultural person I have met; against all the predictions of the hearing world, he has proved a remarkable leader while vastly increasing the school's endowment.
Deaf President Now is Lexington's inspiration. At the Borough President's office, Hlibok is electrifying. An articulate signer can build up a picture in front of himself, and the iconic content of A.S.L. provides much of its immediacy and power. Like M.J., Hlibok takes over a substantial block of space in front of himself when he signs. He says that the Lexington board members are like adults playing with a doll house, moving deaf students like dolls. He seems to create the house in the air; by the time he has finished, you can see it and the interfering arms of the board reaching into it. It is as if his fingers have left trails of light behind them that hold the pictures he is drawing. His wrists snap sharply with conviction, and his hands open and close as if they might eventually stop in the shape of fists. The students cheer, many of them by raising their hands over their heads and waving them, fingers splayed, in Deaf applause.
In the midst of the Lexington fracas, Max Gould, the newly appointed chief executive, resigns. There are waves of astonishment. Gould claims that his appointment has been muddying the real issues facing Lexington. Seizing the air of opportunity, a board member proposes Phil Bravin as board president, and the incumbent withdraws. The Gallaudet scenario has repeated itself. Many Deaf people, when they are very excited, make loud sounds, often at very high or very low pitches, wordless exclamations of delight. In the halls of Lexington, students cheer, almost incredulous that their actions could have been fruitful, and anyone hearing is transfixed by the sound.
"It was a real sense of deja vu," Phil Bravin would say to me one afternoon a few months later. "It was so much like Gallaudet all over again, and it showed that that victory was just the beginning. It was also the best thing that could have happened to those students, no matter how many classes they missed during the protests. You can't learn civil rights from a textbook. Some of them came from families that said, `You're deaf; don't shoot too high.' Now they know better."
At Lexington graduation, a week later, Hlibok is the speaker. In the midst of a hackneyed, boring speech, he says, rather casually, "From the time God made earth until today, this is probably the best time to be Deaf." At a victory celebration the next day, Jeff Bravin says, "We'll be running our own show now." Jackie Roth says: "It's all great. But the battle's not over." And indeed, within a month a new saga will begin over the appointment of a principal. For J.H.S. 47, New York City's only public school for the deaf; once more, the Deaf will be excluded from the selection process.
SAVE THE CHILDREN
"Mainstreaming" (or "inclusion")--"the backlash," as M.J. Bienvenu calls it--is making schools ever more the locus of Deaf struggles. The Americans With Disabilities Act, in an attempt to give full educational benefits to people once shunted into second-rate special schools, has recommended that schools be made more fully accessible. Public law 94-142 maintains that everyone who can use ordinary schools should do so. For the deaf, often physically unable to learn the mainstream's means of communication, this is the worst disaster since the Congress of Milan. "Children from Spanish-speaking homes may learn English at school as a second language," says M.J. "Children from non- signing homes who are taught only in English at school may never learn language at all." The Clinton Administration has not been receptive to calls for separate Deaf schools. "It is a terrible abuse," says Oscar Cohen, Lexington's superintendent. Jackie Roth says, "It makes me sick with rage."
"There are some children who can function well in mainstream schools," says Robert Davila, an Assistant Secretary of Education under George Bush and a leader of the Hispanic Deaf community. "They need help from supportive families, special abilities, good language of some kind and constant individual help from teachers. Many children, even if they overcome the incredible obstacles, will be so lonely there. The Deaf school where I went was my salvation."
According to the Rowley decision, which upheld a school district's refusal to provide interpreter services to a deaf girl on grounds that she was passing, it is the obligation of the schools into which children are mainstreamed to give "sufficient" education rather than to "maximize" those students' potential. Their social welfare is not a concern.
Once considered the vanguard of Deaf separatism, M.J. Bienvenu's Bicultural Center now focuses on cooperation; it laid the groundwork for the Bi-Bi (bilingual, bicultural) movement in education, which is the Deaf community's answer to mainstreaming and an alternative to the trend in Deaf education for "total communication."
"Total communication" means speaking and signing at once, and it's difficult to do. Non-A.S.L. signed languages, predicated on oral syntax as they are, are sometimes nearly incomprehensible. And the structures of English and A.S.L. are completely different; you can no more speak English while signing in A.S.L. than you can speak English while writing Chinese. In English, words are used in sequence; A.S.L. often uses words simultaneously, or amalgamates them into composite signs. So in A.S.L., one gesture could mean "He moved from the East Coast to the West Coast." If you sign "he," then "moved," then "from" and so on, logic disappears; a visual grammar conveyed sequentially is "unnatural" and counterintuitive.
In Bi-Bi, children are encouraged to develop sign as a "natural" first language; written English is taught as a second language, and many students seem to excel at it, running close to their hearing counterparts. (It should be noted that, on average, deaf high-school graduates have a fourth-grade reading level.) The technique is gaining: Eddy Laird, superintendent of the Indiana School for the Deaf, has been one of the first to institute Bi-Bi on a full scale. It has also been used at the schools on the Gallaudet campus.
Spoken English is taught but not emphasized within the Bi-Bi of spoken language is a real disability. It is striking that many of the most extreme anti-oralists themselves have and use excellent oral skills. "They're incredibly useful, and anyone who can learn them should," Jackie Roth acknowledged. "I happen to have a skill there, and it's been invaluable for me. But speech can't be taught at the cost of human growth. Balance!"
A `FAMILY' GATHERING
Fresh from Lexington, I go to England to meet leaders of the British Deaf community. Word of the protests has reached them through the Deaf media (a broad range of local and international newspapers, newsletters, special television programs, fax and E- mail), but in Britain there has been no equivalent of Gallaudet's Deaf President Now; the situation I describe seems inconceivable. "We're 40 years behind," says Doug Alker, the only Deaf executive at the Royal National Institute for the Deaf (which the Deaf call Really Not Interested in the Deaf). "Most deaf people in Britain see themselves as victims." Hearing people often make the mistake of assuming that sign is a universal language, but there are almost as many signed as spoken languages. American Sign Language is related to French sign (because of Laurent Clerc), but British sign is extremely different.
I also visit the famed Deaf Scottish musician Evelyn Glennie, who can feel the trembling of the separate instruments of an orchestra, can modulate her voice's timbre with real beauty, can even understand words through vibration. Her solo percussion performances astonish. "If I had a deaf child," she says, "I would teach him by holding him against my body all the time, so he could feel the vibrations of my speech. I would lie with his hands on my throat, hold him against my heart, lay him on the piano so he could learn about sound and music from the air. With a hearing child, I'd do the same. Your ears are just one of a multitude of ways of experiencing sound."
Back in the United States, I attend the biennial National Association of the Deaf convention, which takes place this year in Knoxville, Tenn., with almost 2,000 Deaf participants. At Lexington, I saw Deaf people stand up to the hearing world. I learned how a TTY (a telephone cum typewriter device for the Deaf) works, met pet dogs who understood sign, talked about mainstreaming and oralism and the integrity of visual language. I became accustomed to doorbells that flashed lights instead of ringing. But none of this could have prepared me for the immersion that is the N.A.D. convention, where the brightest, most politicized, most committed Deaf gather for political focus and social exchange. The association has been the center of Deaf self-realization and power since it was founded in 1880. There, it is not a question of whether the hearing will accept the existence of Deaf culture, but of whether Deaf culture will accept the hearing.
I arrive the night of the president's reception. There are 1,000 people in the grand ballroom of the Hyatt Regency, the lights turned up because these people are unable to communicate in darkness. The crowd is nearly soundless; you hear the claps that are part of the articulation of A.S.L., the clicks and puffing noises the deaf make when they sign, and occasionally their big uncontrolled laughter. People greet each other as if they have been waiting forever for these encounters--the Deaf community is close, closed and affectionate.
Deaf people touch each other far more than the hearing, and everyone here hugs friends. I see demonstrators I got to know at Lexington and people I talked to only in formal interviews; here at the N.A.D., there are no barriers and boundaries, and I, too, find myself hugging people as if I have known them forever. Yet I must be careful of the difference between a friendly and a forward embrace; how you touch communicates a world of meaning in Deaf circles. I must be careful of looking abstractedly at people signing; they will think I am eavesdropping. I do not know any of the etiquette of these new circumstances. "Good luck with the culture shock," more than one person says to me, and I get many helpful hints.
As I look across the room it seems as if some strange human sea is breaking into waves and glinting in the light, as thousands of hands move at stunning speed, describing a spatial grammar with sharply individual voices and accents. The association is host to the Miss Deaf America pageant, and the young beauties, dressed to the nines and sporting their state sashes, are objects of considerable attention. "Look how beautifully she expresses herself," says someone, pointing to one contestant, and then, of another: "Can you believe that blurry Southern signing? I didn't think anyone really signed like that!" (Regional variations of sign can be dangerous: the sign that in New York slang means "cake" in some Southern states means "sanitary napkin," which led to considerable confusion at mealtimes; my own poor articulation led me to invite someone not to have "lunch," but to have "a lesbian.")
The luminaries of the Deaf world--activists, actors, professors--mix comfortably with the beauty queens. I am one of perhaps a dozen hearing people at this party. I will soon come to understand better how factionalized the Deaf community is. (M.J. Bienvenu and Jackie Roth and Greg Hlibok, for example, do not seem to like each other, though "all the factions always pull together when necessary," M.J. reassures.) I will hear of the crab theory (if one crab is strong enough to climb out of the barrel, the others pull him back down; Deaf people use this metaphor to describe their community all the time), and I will see how petty ideology has split a community that once stood firmly united. Nonetheless, the basic fact of Deaf culture remains. I have heard Deaf people talk about how their "family" is the Deaf community. Rejected in so many instances by parents with whom they cannot communicate, united by their struggle with a world that is seldom understanding of them, they have formed inviolable bonds of love of a kind that are rare in hearing culture. At the National Association of the Deaf, they are unmistakable. Disconcerting though it may sound, it is impossible, here, not to wish you were Deaf. I had known that Deaf culture existed, but I had not guessed how heady it is.
The association members are a tiny minority, less than 10 percent of the nation's Deaf; most deaf people are what the Deaf call "grass roots." The week after the convention, the national Deaf bowling championships in Baltimore will attract a much larger crowd, people who go to Deaf clubs, play cards and work in blue-collar jobs. Below them in the Deaf status structure are the peddlers (the Deaf word for the mendicants who "sell" cards with the manual alphabet on subways--the established Deaf community tried as early as the 40's to get them off the streets); on Lexington Avenue around 103rd Street in New York, some homeless deaf were living on the roof of a building. "Those people also," says Jackie Roth, "whatever they have lost, have this connectedness in their own Deaf communities. It comes with the territory, so long as they are not isolated from other Deaf people."
During the following week, I will do dozens of interviews, struggling to pick up the subtleties of A.S.L. accent that betray so much of the meaning of what people are saying. I will discuss the Deaf travel industry with Aaron Rudner, of Deafstar Travel, who started this business going, and with Joyce Brubaker, of Deaf Joy Travel, who is organizing the first Deaf gay cruise. I will watch videos of eloquent signers telling stories. I will attend seminars on A.S.L. usage, on AIDS, on domestic violence. I will talk to Alan Barwiolek, who founded the New York Deaf Theater, about the difference between plays translated for the Deaf and Deaf plays. I will see Deaf comedians. (Ken Glickman, a.k.a. Professor Glick: "Deaf and dumb? No, I'm deaf and bright. You must be hearing and dumb or you wouldn't have asked me that. You think I'm hearing-impaired? I think you're deaf-impaired, and I can sell you, cheap, a deafing aid. This ball of cotton wool can help any profoundly hearing person who needs it. Put one in each ear and we'll be making a start. My blind dates are always deaf dates. You ever been on a deaf date? You go out with someone and then you never hear from her again.") Over dinner, Bernard Bragg will do his lyrical signed translations of William Blake while his pasta gets cold. (Signers can talk with their mouths full, but they can't easily cut up their food and talk at once.)
Gary Mowl, head of the A.S.L. department at National Technical Institute of the Deaf, has come to the conference with his children. He often corrects their grammar and usage in A.S.L. The importance of having a correct language--"Gallaudet A.S.L.," an answer to standard English--has only recently been recognized. "People ask why you need to teach A.S.L. to native signers. Why do English-speaking students study English?" I think of the sign used by the Deaf gangs of Harlem and the East Village, which is completely incomprehensible to an A.S.L.-user.
Late one night, I am watching captioned television with Deaf friends. "When I was little, before captioning came in," one says, "we used to watch TV as a family. It was great. We would compare notes on what we saw and propose our own versions of the plot. Later, if we saw other Deaf friends who had seen the same show, we would all discuss what we thought had happened. We would construct personalities and events from our guesswork and imaginations; it was practice for the guesswork and humor we need to interpret the world. We laughed so much, and it brought us so close together." He stops for a moment, and we both look back at the television with its neatly typed messages. "Of course having captions on the news is great, but--this is so boring by comparison to the old days."
I get into a lot of conversation about interpreters: the shortage of competent interpreters is appalling. There is always competition between CODA (Children of Deaf Adults; refers only to hearing people) professional interpreters and non-CODA ones. The complexities and ambivalences of CODA-Deaf relations, humorously but knowingly conveyed by Lou Ann Walker in "A Loss for Words," are a big part of Deaf culture. (I have the good fortune to work with a CODA named Marie Taccogna, a gifted interpreter who translates both language and culture.) At public meetings, there are often interpreters who are "doing some kind of a dance," says Rob Roth, who is at the National Association of the Deaf to represent AT&T, "which is lovely as interpretive performance but conveys no information in a language I speak. Hearing people love their picturesque eloquence."
A New York City court recently refused to get a new interpreter for a plaintiff who couldn't understand the trial as it was interpreted to her. There are lawsuits pending involving Beth Israel and New York University hospitals for failure to provide interpreting services. Early this year, Leah Hager Cohen --daughter of Oscar Cohen--published an eloquent book, "Train Go Sorry," which follows the careers of a few students at Lexington, and through a stunningly empathetic examination of their stories and her own creates a brilliant narrative of Deaf culture. One of the most moving passages in that book describes the death of Leah Cohen's grandfather. Oscar tried to stay in the hospital to interpret for his father, but was prevented on grounds that the hospital had an interpreter. The interpreter was in fact off-duty for the weekend, and Oscar's father died without being able to communicate with his doctors, without knowing what was happening to him or where he was going, without being consulted about his own treatments.
On Thursday, there is a College Bowl involving Gallaudet, the National Technical Institute of the Deaf and California State University at Northridge. I am impressed by the questions (I cannot answer more than half), and I remember how, 20 years ago, the deaf were generally held to be somewhat retarded. Friday night is Miss Deaf America. For the talent section, two girls do monologues about AIDS. There is some signed poetry, some signed music. The National Deaf Dance Theater, whose members pick up the nuance of music through its vibrations, do a dramatic stage piece, and Bob Daniels, a partly deaf performer, does a dance and sign number to "With You on My Arm" from "La Cage Aux Folles." The emcees are Bernard Bragg (who could, tonight, be Bert Parks) and Mary Beth Barber (who was Miss Deaf America in 1980). For the onstage interview, each of the semifinalists is asked how she feels about doctors' attempts to cure the deaf. "If someone's unhappy with being deaf and he wants to change it, that's up to him," says Genie Gertz, Miss Deaf New York, succinctly. "I wouldn't ever change it. Why would I?" I am in the cheering section for Genie, the beautiful daughter of Russian Jewish parents who came to this country from Leningrad when she was 8. In an eloquently rendered monologue written for the talent section, she tells the story of her parents' struggle against Communism, and of the freedom everyone found in the United States --which included, for her, the move from being a social misfit to being Deaf and proud. I have made endless jokes about the Miss Deaf America Contest and yet in reality it's surprisingly moving. It is such a striking idea, such a radical one, that you can be Deaf and glamorous.
The V.I.P. party after the gentle, radiant Miss Deaf Maryland has won is back in the grand ballroom at the Hyatt. I am talking to Alec Naiman, whom I first met at Lexington. A world traveler, he was one of the pilots in this year's Deaf fly-in at the Knoxville airport. We are discussing a trip he made to China. "I met some Deaf Chinese people my first day, and went to stay with them. Deaf people never need hotels; you can always stay with other Deaf people. We spoke different signed languages, but we could make ourselves understood. Though we came from different countries, Deaf culture held us together. By the end of the evening we'd talked about Deaf life in China, and about Chinese politics, and we'd understood each other linguistically and culturally." I nod, "No hearing American could do that in China," he says. "So who's disabled then?"
At 2:30, I still have not left. I remember that one Deaf sociologist is writing a thesis on Deaf goodbyes. Until the 1960's, deaf people had no means of communication except letters, telegrams or personal appearances. If you wanted to organize dinner with a friend, you had to go to his house; you could take two days just inviting people to a party. Saying goodbye was never easy; you would suddenly remember whatever you had forgotten to tell, and, knowing it would be some time before you could make contact again, you would keep saying goodbye, and you would keep on not leaving. "It's a Deaf party," people had said to me of more than one event. "It'll go on forever." And so this evening, it is impossible to tear yourself away. People are even more physical, more flirtatious than usual. Upstairs there is dancing to loud, pulsing music whose beat goes right along the floor and up your legs. No matter how great the noise, you can dance and sign--the blurring edge between what bodies say to each other as bodies and what they say to each other with words. I finally tear myself away near 4. But I am of the impression that some people will never leave, that the sun will rise and set before that intense, exuberant conversation will draw to a close.
FINDING THE CURE, FIGHTING THE CURE
How to reconcile this Deaf experience with the rest of the world? Should it be reconciled at all? M.J. Bienvenu has been one of the most vocal and articulate opponents of the language of disability. "I am Deaf," she says to me in Knoxville, drawing out the sign for "Deaf," the index finger moving from chin to ear, as though she is tracing a broad smile. "To see myself as Deaf is as much of a choice as it is for me to be a lesbian. I have identified with my culture, taken a public stand, made myself a figure within this community." Considerably gentler now than in her extremist heyday in the early 80's, she acknowledges that "for some deaf people, being deaf is a disability. Those who learn forced English while being denied sign emerge semilingual rather than bilingual, and they are disabled people. But for the rest of us, it is no more a disability than being Japanese would be."
This is tricky territory. If being deaf is not a disability, then deaf people should not be protected under the Americans With Disabilities Act. It should not be legally required (as it is) that interpreters be provided in hospitals and other public service venues, that a relay operator be available on all telephone exchanges, that all televisions include the chip for caption access. It should not be necessary for the state to provide for separate schools. Deaf people should not be eligible for Social Security Disability Insurance (which they often claim). Those who say that being deaf is not a disability open themselves up to a lot of trouble.
Few words provoke a more passionate response in deaf people than "cochlear implant." Approved in 1985, cochlear implants are the closest thing to a "cure" for deafness. A tiny chip is surgically implanted in the inner ear and connected to a magnet just under the skin, which attracts another magnet in a transmitter attached behind the ear. A wire leads from that to a "speech processor" you can clip to your belt. The processor converts sound into electrical impulses and sends them to the implant, which conveys them to the brain, where they are processed as sound would be. The result is an approximation of hearing.
Supporters say implants allow people to overcome a terrible disability, giving those who would be marginalized access to normal life. Opponents complain, first, of the limitations of the implant itself: that it is dangerous, deforming and ineffectual; that it makes people un-deaf without making them hearing. They object also to the very idea of trying to cure the deaf. Paddy Ladd, a British Deaf scholar, calls implants "The Final Solution." The problem is worsened by the fact that the implants are most effective when put in children at about age 2. ("Like the Nazis," says M.J., "they seem to enjoy experimenting on little children.")
Decisions about implanting are therefore usually made by parents, most often by hearing parents (though Hearing Health magazine published an anecdote of a 90-year-old deaf mother who tried to brow-beat her 70-year-old son into getting implants). This feeds into an ongoing debate about who the "parents" of deaf children are--their biological progenitors or the Deaf community.
Cochlear implants are not very dangerous. Surgical complications are unusual, though several surgeons scoffed at the Cochlear Corporation's assertion that the surgery is "comparable to a tonsillectomy"; some people have suffered disfiguring facial paralysis that appears to be connected to the surgery. The implant has been around for only about 30 years, but so far they have not caused the complications that have resulted from other placements of foreign material in the body. (Deaf activists talk about the horrors of silicone implants and pacemakers.) The implant interferes with certain diagnostic tests (magnetic resonance imaging, etc.), but the electronic stimulation the implant creates appears to have a positive effect on the nerve tissue that surrounds it. Having a wire coming out of your neck can make you look like an extra from a bad "Star Trek" episode, but it is possible to grow hair so the wire is generally hidden. Much National Association of the Deaf propaganda about the danger of implants is alarmist; some of it is positively inaccurate.
The question of the effectiveness of the implants is more complicated. Cochlear implants are sometimes very effective, often somewhat effective and sometimes practically useless. A late-deafened adult who "regained" his hearing with an implant said it made everyone sound like R2D2 with laryngitis. For late- deafened people, however, implants can be a godsend; the approximation of sound they provide is sufficient for people already functional in spoken language to understand much of what they hear. Lord Ashley, the Member of Parliament who has been one of Britain's most inspired campaigners for civil rights, was deafened 20 years ago and now has implants; he spoke on the phone with apparent ease, and said that he has no trouble speaking to people he knows, one on one, though he might have difficulty with a new voice or with a busy conversation.
Prelingual deaf adults who have the implants often find them ineffective or just irritating; whether this is because they are unaccustomed to interpreting sound and would find that difficult even if they were given perfect hearing is unclear. For small children, there have been mixed results. The F.D.A. failed to set language acquisition as one of the criteria for approval. Almost all children with implants have some "useful" perception of sound, but the sound they receive is often too garbled for them to interpret it as language, and so some fall into that frightening category of the cognitively retarded who develop no real language. The Cochlear Corporation can provide the statistics to show that many implanted children learn more and better oral language, but "more and better" is not really enough, especially if this is to be your sole mode of communication forever.
The problem--in practical terms--is that parents too often want to believe that the implants make their children hearing, which they do not do. Implants are not a cure; to treat them as a cure is a dire mistake. The children who receive them are often not given any special Deaf education. Dr. Robert Ruben, an ear- nose-and-throat specialist at Montefiore Hospital in the Bronx, said: "If I had a deaf child, I would implant one ear, leaving the other free in case cures develop that require an intact inner ear. I would bring up that child bilingually. Parents could phase out sign later on if they wanted, but it should not be abandoned until it becomes clear that the child can develop satisfactory oral language. The worst mistake is for parents to neglect the one most important thing--that language of any kind, no matter what kind, must somehow be got into the child soon enough." There are also miracle stories of children for whom the implant has been peerless, but they are unusual and unpredictable.
The implant destroys all residual hearing a child might have. Though accurate hearing tests can be done on infants, it is impossible to determine how well those children might use their residual hearing. Anyone with a hearing loss over 90 decibels is classified as "profoundly deaf." I met people with a 50-decibel hearing loss who could understand me only with interpretation or lip reading; Jackie Roth is categorized as "profoundly deaf," but I could talk to her as I would to a hearing person. "I don't know," she says to me. "I just get a lot when people speak to me." Hearing loss is measured as an average of loss in various registers, so someone with a 100-decibel loss could have good perception for very high frequency sound--and most sounds operate at many frequencies. Further, detection of sound and discrimination of sound are two separate abilities. Some people can discriminate sound well beyond their ability to detect it. So deciding which children are so deaf that they need implants is not easy, because by the time you can detect discriminatory abilities, it is too late for the implants to be the basis of primary language acquisition.
Cochlear implants remind me, more than anything else, of sex-change surgery. Are transsexuals really members of their chosen sex? Well, they look like that other sex, take on the roles of that other sex and so on, but they do not have all those internal workings of the other sex, and cannot create children in the organic fashion of members of the chosen sex. Cochlear implants do not allow you to hear, but rather to do something that looks like hearing. They give you a process that is (sometimes) rich in information and (usually) free of music. They make the hearing world easier, but they do not give you hearing. What they give you has value, so long as you know in advance what that is.
While the implant debate rages, doctors are searching for more sophisticated and effective cures for the deaf. There are many kinds of deafness, 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 embryonic period and then incapable of regenerating. Once you lose them, conventional wisdom has always had it, they're gone. In the early 1980's, Jeffrey Corwin, working with sharks in Hawaii, noticed that adult sharks have larger ears than baby sharks--larger in their number of hair cells. This indicated that it is possible for hair cells to be produced by vertebrates in a postfetal state; and subsequent research demonstrated that fish can produce hair cells throughout life, even to replace hair cells that have been lost. A few years later, Douglas Cotanche discovered that baby chicks whose hair cells were partly destroyed regenerated hair cells; observable lesions of the inner ear simply disappeared. When deafened chicks were tested, it was confirmed that they had recovered hearing.
This blew away the notion that hair cells cannot regenerate. In 1992, researchers in Jeffrey Corwin's lab fed retinoic acid to pregnant mice, and the result was that the mice were born with extra hair cells. Building on this, a few scientists began work to see what effect retinoic acid might have on the inner ear of mammals past the usual prenatal stage for developing sensory cells, and in April 1993, a team of researchers working under the supervision of Robert Ruben published an article in Science in which they described their unprecedented success at causing the regrowth of hair cells by treating excised portions of the damaged inner ear of an adolescent rat with retinoic acid and calf serum. It is possible to kill the hair cells of mammals after birth and then get them to regrow.
It has not yet been possible to stimulate this growth in a live animal, but, according to Dr. Ruben, successful in vivo work is just around the corner. "I would hope to see trials in humans by the end of the century," he said. If it were possible to cause regrowth of cochlear hair cells in human beings, almost all deafness could be treated. Since most deafness is degenerative (those born deaf have lost the cells in utero; almost no fetus exists that doesn't develop the cells at some stage), the question would be whether the new hair cells would remain alive in the inner ear, or whether they would die off again as their predecessor cells had done. There can be no question, however, that if hair regeneration were possible, there would be treatments for many deaf people. "From the time God made earth until today, this is probably the best time to be Deaf," Greg Hlibok said; and yet this is also the moment when the Deaf population is dwindling as it has never done before. Even now, deafness is defined as a "low-incidence disability"; there are 20 million deaf or hard-of-hearing people in the United States, but the profoundly deaf population is only about 2 million. Even without cutting edge research, the control of childhood diseases is shrinking that population. As it gets better and better to be deaf, it also gets rarer and rarer.
MAKING THE IRREGULAR REGULAR
What to say, then, of the cries of genocide, the resistance to the whole idea of curing the deaf? I have heard of a couple who opted for an abortion when they heard that their child was hearing, so strong a view did they hold on the superiority of Deaf ways. But I also met many Deaf individuals who objected to the way that the Deaf leadership (focused around the National Association of the Deaf) has presumed to speak for all the deaf people of America. There were plenty who said that being deaf is of course a disability, and that anything you could do about it would be welcome. They were righteously indignant at the thought of a politically correct group suggesting that their problems weren't problems. I also met people who subscribed to the old deaf self-hatred, who were ashamed and saddened when they gave birth to deaf children, who felt that they had always been second-class people and that they could never be anything more if they were deaf. Their unhappy voices cannot be forgotten; in some ways, it doesn't matter whether M.J. Bienvenu "cures" them of their ignorance or Dr. Ruben "cures" their ears, but they are out there in numbers and need help from someone.
Most hearing people respond to cries of genocide with an arrogant shrug. Of course if you can help deaf people you should help them. Give them hearing. Let them escape from their prison of silence. The triumph at Lexington this year coincided with the Stonewall 25th anniversary celebrations in New York, and one could not help being struck by the parallels. Here were thousands of people converging on New York to celebrate an identity that, 25 years ago, was described not as an identity, but as an illness. Unlike other minority groups, gay men and women are members of a culture that does not include their parents; most are born to parents who would have liked them to be born otherwise. In a procreative society, their condition has been described as a handicap. Twenty-five years ago, before the principle of gay rights had been broadly articulated, few people questioned that it was right and fit to try to cure homosexuality --a terrible misfortune despite which (rather than because of which) some people managed to function at a high level.
Lewis Merkin is an actor and playwright, co-author of a remarkably moving play, "Language of Love," which the New York Deaf Theater will open here in December. It is "the personal odyssey of a Deaf gay man." Born to grass-roots deaf parents in Philadelphia, with very good residual hearing, he grew up between the Deaf and hearing communities. "I could fit in almost well enough in the hearing community, almost well enough to pass," he said. "When I was about 18, I had to sort of come out of the closet as a Deaf person. I had to admit how much I couldn't hear, and to recognize that I would always speak with an `accent.' I stopped going to parties and pretending I could follow everything going on. I stopped struggling against something I would never be able to change." Within a few years, Merkin had grown fully into a Deaf identity, and he became an actor, appearing in the role of Orin in "Children of a Lesser God" on Broadway.
He describes the parallel journeys of gay and Deaf identity. "When I was growing up, I looked around at these grass-roots deaf people, who were marginal, unimportant, not part of society, completely dependent on others, with no education, people who saw themselves as second-rate. And I recoiled. I thought, that's not me, and I felt sick at the thought that I was deaf. It took a long time for me to understand what it meant to be Deaf, what a world was open to me. When I first began to think about being gay, I saw limp-wristed drag queens and guys in leather hanging out on street corners, and again I thought, that's not me, and I hated the idea of being gay. And it was only with time that I came into a real gay identity."
The Deaf community is riddled with prejudice; deaf people tend to be conservative, and can be very intolerant of minorities or of other handicaps. Deaf parents are no happier about gay offspring than are hearing parents--though, interestingly, the incidence of gayness within the Deaf community is perhaps 15 percent higher than in the hearing world. There is a kinship between the groups. It has been suggested that as many as 90 percent of hearing-Deaf marriages end in divorce, but the majority of successful Deaf-gay relationships appear to be between Deaf and hearing individuals. "What we have experienced is so similar," M.J. told me. "If you are deaf, you know almost exactly what it is like to be gay, and vice versa."
Some opponents of the implants have demanded that young children not be implanted, and have proposed that people choose when they are 18 whether to have the implants or not. But if you are 18 and asked to make a choice, you are choosing not simply between being deaf and being hearing, but between the culture you have known and the culture you have never known. By then it is too late; your experience of the world has been defined by being Deaf, and to give it up is to reject who you have become. It lacks dignity: it is an admission of inadequacy, a discarding of your self.
It's hard to have children who are different from you. If gayness could be detected in infancy and easily "corrected," then many parents would happily pay through the ears for the surgery. "In a world full of childhood cures," said Rob Roth, "I would be neither Deaf nor gay. That doesn't make me feel bad about myself, but I know it's true." Many gay men and lesbians would have been glad, at 8 or 10 or 12 or 14, to become "normal," even if, a few years later, they had grown into selves defined by the experience of gayness. Most Deaf children of hearing parents have had periods of rejecting their Deaf identity. Twenty-five years ago, the arguments for curing gayness seemed as unarguable as the arguments for curing the Deaf seem to be now. When and how did the shift from the pathological to the cultural view of gayness take place? How did we get from hormone injections and electroshock to gay soldiers and domestic partnership?
It is tempting, in the end, to say there is no such thing as a disability. Equally, one might admit that almost everything is a disability. There are as many arguments for correcting everything as there are for correcting nothing. Perhaps it would be most accurate to say that "disability" and "culture" are really matters of degree. Being Deaf is a disability and a culture in modern America; so is being gay; so is being black; so is being female; so even, increasingly, is being a straight white male. So is being paraplegic, or having Down syndrome. What is at issue is which things are so "cultural" that you wouldn't think of "curing" them, and which things are so "disabling" that you must "cure" them--and the reality is that for some people each of these experiences is primarily a disability experience while for others it is primarily a cultural one. Some blacks are handicapped by blackness; some who are gay are handicapped by gayness; some paraplegics thrive on the care they receive and would be lost if their mobility were returned. Some deaf people are better off deaf and some would be better off hearing. Some could perhaps be both: "I would never want to move away from my Deaf identity," Jackie Roth said. "But if I could have full hearing, without complications, I would like to have it."
There is something eerie and sinister about the image of a world sanitized of irregularity; there is a terrifying point when good works become fascistic control. If therapists who set out to "cure" gayness had succeeded, and succeeded fast, there would probably never have been a gay civil rights movement, and we would have lost all the singular contributions to the mainstream that an acknowledged gay culture has provided. The National Association of the Deaf convention demonstrates amply that the Deaf have as much of a culture as anyone. There is a race going on. Running on one team are the doctors who will make the deaf hear. They are humanitarian miracle workers, and they are bringing something very valuable to the many nonhearing individuals who would like to know sound and to speak. On the other team are the exponents of Deaf culture. They are visionary idealists who are trying to preserve a remarkable and seductive community.
If Deaf culture can be made as visible, important 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. Perhaps, like the search for a cure to gayness, the search for a cure for the deaf will be dropped by respectable institutions--which would be both a bad and a good thing. If the cure comes before the search for it is obviated, then virtually all hearing parents and many grass-roots 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 in this article will be as poignant and remote as a tale of Babylon. This, too, would be both a bad and a good thing. As genetic engineering progresses, we may be able to cure everything, and how we will decide which good and which bad we prefer will be increasingly important. "Our situation also bears on yours, on the whole world's," M.J. Bienvenu said, her signs almost mockingly urgent. I think she is right. This race may be a good indicator for how we value difference altogether.
About the author: Born in New York, Andrew Solomon studied at Yale University and then at Jesus College Cambridge. He is the author of The Irony Tower: Soviet Artists in a Time of Glasnost and a bestselling first novel, A Stone Boat (Faber and Faber UK Ltd. and Faber and Faber US, 1994; US paperback with Plume/Penguin). The book was on the Village Voice bestseller list, and was recently named a finalist for the Los Angeles Times first fiction award. Mr. Solomon is a contributing writer for The New Yorker and other publications. His essays have been translated into English, Spanish, Russian, German, French, Swedish, Finnish, Chinese, Dutch, Latvian, and Italian.