Far From The Tree - Far From the Tree Part 2
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Far From the Tree Part 2

There are impassioned opponents of this model of Deaf culture. Edgar L. Lowell, director of Los Angeles' staunchly oralist John Tracy Clinic, said, "Asking me to speak on the 'place of manual communication in the education of deaf children' is like asking the shepherd to speak on the place of the wolf in his flock." Tom Bertling's memoir, A Child Sacrificed to the Deaf Culture, A Child Sacrificed to the Deaf Culture, tells the story of how he was shipped tells the story of how he was shipped off to a boarding school where he was instructed in Sign well below his intellectual level. He felt that ASL, which he derides as "baby talk," was being rammed down his throat; he has chosen to use English instead as an adult. One Deaf person said to me, "We really are the Israelis and the Palestinians." The social critic Beryl Lieff Benderly described it as "a holy war." When the Smithsonian announced plans for an exhibition about Deaf culture in the late 1990s, outraged parents who believed that a celebration of ASL was a challenge to oralism protested that they should be free to choose oral education for their children-as if, deaf historian Kristen Harmon pointed out, the Deaf community were in the business of child-snatching. off to a boarding school where he was instructed in Sign well below his intellectual level. He felt that ASL, which he derides as "baby talk," was being rammed down his throat; he has chosen to use English instead as an adult. One Deaf person said to me, "We really are the Israelis and the Palestinians." The social critic Beryl Lieff Benderly described it as "a holy war." When the Smithsonian announced plans for an exhibition about Deaf culture in the late 1990s, outraged parents who believed that a celebration of ASL was a challenge to oralism protested that they should be free to choose oral education for their children-as if, deaf historian Kristen Harmon pointed out, the Deaf community were in the business of child-snatching.

Yet the fear of losing one's child to the Deaf world is more than a dark fantasy. I met many Deaf people who thought of the previous generation of Deaf people as their parents. The higher achievement levels of deaf of deaf were often used as an argument that deaf children should be adopted by deaf adults. Even a pro-Deaf hearing parent said, "Sometimes Deaf culture looks like the Moonies to me: 'Your child will be happy, just don't expect to see her anymore, she's too busy being happy.'" Cheryl Heppner, a Deaf woman who is executive director of the Northern Virginia Resource Center and who advises parents of deaf children, said, "Deaf people feel ownership of deaf children. I admit it. I feel it, too. I really struggle in not wanting to interfere with a parent's right to parent, at the same time knowing that they have to accept that the child can never be one hundred percent theirs."

People whose language is Sign have had to fight for acceptance from within the confines of a language that their opponents do not understand; they could not explain what they wanted until they got it. This has created an intense anger that subtends Deaf politics. The Deaf psychologist Neil Glickman has spoken of four stages of Deaf identity. People start out pretending to be hearing, with the discomfort of the only Jew in the country club or the only black family in the suburb. They progress to marginality, feeling they are not a part of either deaf or hearing life. Then they immerse themselves in Deaf culture, fall in love with it, and disparage hearing culture. Finally, they achieve a balanced view that there are strengths in both the deaf and the hearing experience.

For Caro Wilson, teaching a child to speak was not about politics but about love. When Caro's son, Tom, was two weeks old, Caro's mother noticed that he didn't react when she wheeled his carriage past a pneumatic drill. Caro observed the deficit at six weeks. Their doctor remained unconvinced until Tom was eight months old, and Tom's father, Richard, didn't believe it until the medical diagnosis was in. Richard's first move was to buy every book he could find on deafness, and Caro's was to get the explanations over with. The Wilsons lived in a small village in the south of England. "The postmistress said, 'Would you like me to tell everybody?'" Caro recounted. "I said, 'Yes, I would like everyone to know.' So I got allies very quickly." father, Richard, didn't believe it until the medical diagnosis was in. Richard's first move was to buy every book he could find on deafness, and Caro's was to get the explanations over with. The Wilsons lived in a small village in the south of England. "The postmistress said, 'Would you like me to tell everybody?'" Caro recounted. "I said, 'Yes, I would like everyone to know.' So I got allies very quickly."

Caro had been a teacher, but she and Richard soon agreed that he would henceforth earn all the money while she would take care of Tom and later their daughter, Amy. "Suddenly, your house isn't yours anymore, because professionals are marching in as if they owned you and the deaf child," Caro said. "I remember very, very strongly thinking, 'If I could just run away with you, Tom, to an island, I'd teach you to talk, and we'd be fine fine!'" When Tom was eleven months old, in 1980, he got his first hearing aids. The family had to choose an educational strategy. "We met somebody with a deaf child who said to me, 'Caro, it's extremely simple. If he's intelligent, he's going to learn to talk.'" At three, Tom was already beginning to develop aspects of oral speech. His consonants were largely incomprehensible to everyone except Caro and Richard, but he was using his voice, and they tried to reward every effort he made to do so. With hearing aids, he could get loud sound, and Caro spent day after day doing drills, saying a thousand times, as loudly as she could, "This is a cup," and handing him a cup.

At first, they watched cartoons, where simple narrative gave a structure for learning sentences; in the face of Tom's deafness, low culture temporarily became high culture. Soon, Tom emerged as an early and fluent reader. Richard liked a book on deafness by Mary Courtman-Davies, and he wrote and asked her to work with Tom. She was severe and a disciplinarian; at home, the Wilsons called her "Mrs. Ferocious." "She was very good at analyzing his language and saw, for example, that he hadn't any adverbs," Caro said. "We saw her about once a month, and she'd give him some work that he and I did together every evening." When he was five, Tom tried to tell her a story that included the sentence, "So the mum picked up a bit of wood." Caro couldn't understand what the mum had picked up; she asked Tom to repeat himself, to draw what he was saying, and finally he brought her a block of wood from the basement. "If he could work that hard, then so could I," Caro said. "I was always quite scared of being too soft on him-especially in social behavior, social niceties, because he was going to need them more than anyone."

The next problem was school. When Tom was six, he was placed in a mainstream class taught by a man with a heavy mustache and beard, and when the Wilsons asked that Tom be transferred into another class, they were told, "We think it's important he learns to lip-read somebody difficult." Caro and Richard said, "We think it's important he learns his nine times table." The situation was not happy, and it was socially alienating. Tom came home one day and said that for sports, he had been asked to be the goalpost. "So we sent him to a very odd little private school with only fifty children," Caro said, "because one of the difficulties is that Tom is intelligent." class, they were told, "We think it's important he learns to lip-read somebody difficult." Caro and Richard said, "We think it's important he learns his nine times table." The situation was not happy, and it was socially alienating. Tom came home one day and said that for sports, he had been asked to be the goalpost. "So we sent him to a very odd little private school with only fifty children," Caro said, "because one of the difficulties is that Tom is intelligent."

Then came secondary school. They met with the head teacher of the local school, who said, "I know people like you. You're going to have too high expectations of this child. That's not fair to you or the child, so you must lower your expectations." Caro was indignant, but also shaken. "I remember," she said, "standing at home, leaning on an apothecary chest. I said to Richard, 'He'll never read Hamlet Hamlet and he'll never say and he'll never say apothecary chest apothecary chest." They looked at all the schools for which they might qualify, including the Mary Hare School for the Deaf, a boarding school in Berkshire. Although all students there are deaf, they do better on standardized national tests than the average British child. Richard had been miserable at boarding school and had sworn never to send a child of his away; Caro was opposed to private secondary education and was also horrified about having Tom so far from home. In the end, however, he went; Caro joined the board of governors. She said, "Tom was hit by homesickness and cried for the first two terms. I was very, very Tom-sick. In the second, third, fourth year, he was very happy, and sixth form was one of the happiest times he's ever had. Adolescence needs to be when you start to make lots of decent friends, or you don't learn how. He had friends there." There was informal signing, but teaching was spoken, and people were encouraged to use their voice. "An interestingly high proportion are from deaf parents," Caro said, "including signing deaf parents who want their children brought up orally. It's a nice place. It's hated by a lot of the Deaf community."

When Tom started, Richard visited the speech therapist and said, "Don't tell my wife I came. But I need you to teach this boy to say apothecary chest apothecary chest." The speech therapist thought this was absurd and so did Tom. Caro laughed as she described it. "He said apothecary chest. apothecary chest. And he also read And he also read Hamlet Hamlet." Tom's love of reading and words has been his common ground with his mother. As she and I talked one afternoon, she flipped through photo albums. There were hundreds of pictures of Caro and Tom walking, sitting, playing, working. Tom's sister made only an occasional appearance. "Richard's taking the photographs, but where is Amy?" Caro said. "She will tell you that that's what it felt like an awful lot of the time. I think it was a very good thing that Tom went to boarding school at twelve, because it gave Amy and me a second chance."

When Tom went away, Caro was elected to the board of the Royal National Institute for Deaf People (RNID). She tried to get some signing board members, but the political Deaf movement in England dislikes the RNID (which some say stands for Really Not Interested in the Deaf), and Caro never got anyone to join. Caro found the hostility both mystifying and counterproductive. "I always felt there was something about the signing deaf community that encourages a prolonged adolescence. It's powerful as a way of experiencing yourself, but ultimately without power in the larger world." Tom, too, found the politicized Deaf community difficult, but he believed in some measure of pride in deafness-or at least pride in being oneself, with deafness as part of it. "I remember Tom telling me about a boy in his dormitory who prayed every night to be cured," Caro said, "and Tom saying, 'That's very sad, Mum, isn't it? I would never do that.' I thought, 'Well, we've done something right.'"

Tom graduated well from Mary Hare and went to Bath University to study graphic design. He got a first, the top degree category, worked for two years at a graphic design company, then decided he wanted to see the world. He took a year and traveled through Australia, New Zealand, Southeast Asia, and South America. He then traveled on his own through Africa. Still, during this period he was somewhat aimless and at times severely depressed. Caro felt both worried and helpless. "Then one day, I heard footsteps coming up the stairs and it was Richard and Tom," she recalled. "Richard said, 'Tom's got some news.' As a parent, you instantly think, 'Oh, he's being prosecuted,' or something. He said, 'I've been accepted by the Royal College of Art for an MA.' We didn't even know he'd applied."

The Royal College, London's preeminent art school, turned out to be full of kindred spirits. For Tom, reimagining himself as an artist conclusively ended his depression, and he gained in both poise and confidence. Tom is still a loner by nature. He once told Caro that he would make an excellent monk if it weren't for God. "He makes such huge progress, but I still want to help somehow, and it's hard not to be allowed to anymore," Caro said.

Having not engaged with Deaf politics, Tom has no particular affection for his condition; indeed, though he was happy for me to talk to his parents, he opted not to meet with me as he didn't want to talk to anyone whose primary concern was his "deficiency," asserting that he saw the deafness as only a small part of who he is. "I can see no benefit whatsoever in Tom being deaf-for him, him," Caro said. "But the benefits for me were absolutely huge. If I'd had to deal with a disability where you spend all your time in the swimming pool or a gym, I would have found it very difficult. But my field is literature. So, to have something about language was absolutely fascinating. I'd been brought up among very clever, high-pressure people. For the first time, through disability, I met people who were good. I'd always been taught to despise people who are just 'good.' I met a lot of friends. I do a lot of charity stuff now. I wouldn't have done any of that without Tom, would I? It would have been a quite different life." found it very difficult. But my field is literature. So, to have something about language was absolutely fascinating. I'd been brought up among very clever, high-pressure people. For the first time, through disability, I met people who were good. I'd always been taught to despise people who are just 'good.' I met a lot of friends. I do a lot of charity stuff now. I wouldn't have done any of that without Tom, would I? It would have been a quite different life."

Caro admires Tom's confidence, and, even more, his courage. "He's making his soul," she said. "We live in this society where people are mostly making money or status. Tom would love money, and he'd love status, but that's not what he's doing. He's taking a long, slow time growing up, but life is quite long."

Shortly after Lexington's graduation in 1994, I attended the NAD convention in Knoxville, Tennessee, with almost two thousand deaf participants. During the Lexington protests, I had visited deaf households. I had learned how deaf telecommunications work; I had met dogs who understood Sign; I had discussed mainstreaming and oralism and the integrity of visual language; I had become accustomed to doorbells that flashed lights instead of ringing. I had observed differences between British and American Deaf culture. I had stayed in a dorm at Gallaudet. Yet I was unprepared for the Deaf world of the NAD.

The NAD has been at the center of Deaf self-realization and power since it was founded in 1880, and the convention is where the most committed Deaf gather for political focus and social exchange. At the President's Reception, the lights were turned up high because deaf people lapse into speechlessness in semidarkness. Across the room, it seemed almost as though some strange human sea were breaking into waves and glinting in the light, as thousands of hands moved at stunning speed, describing a spatial grammar with sharply individual voices and accents. The crowd was nearly silent; you heard the claps that are part of the language, the clicks and puffing noises that the deaf make when they sign, and occasionally their big, uncontrolled laughter. Deaf people touch each other more than the hearing, but I had to be careful of the difference between a friendly and a forward embrace. I had to be careful of everything because I knew none of the etiquette of these new circumstances.

I discussed the deaf travel industry with Aaron Rudner, then of Deafstar Travel, and with Joyce Brubaker, then of Deaf Joy Travel, who was organizing the first Deaf gay cruise. I attended seminars on ASL usage, on AIDS, on domestic violence. I talked to Alan Barwiolek, who founded the New York Deaf Theatre, about the difference between plays translated for the deaf and Deaf plays. I guffawed at Deaf comedians. (Ken Glickman, aka Professor Glick: "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, the acclaimed Deaf actor Bernard Bragg performed lyrical signed translations of William Blake while his pasta grew cold; signers can talk with their mouths full, but they can't cut up their food while speaking. founded the New York Deaf Theatre, about the difference between plays translated for the deaf and Deaf plays. I guffawed at Deaf comedians. (Ken Glickman, aka Professor Glick: "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, the acclaimed Deaf actor Bernard Bragg performed lyrical signed translations of William Blake while his pasta grew cold; signers can talk with their mouths full, but they can't cut up their food while speaking.

The NAD is the host of the Miss Deaf America pageant, and Friday night featured the competition. The young beauties, dressed to the nines and sporting state sashes, were objects of considerable attention. "Can you believe that blurry Southern signing?" someone said, pointing to Miss Deaf Missouri. "I didn't think anyone really 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"; my own poor articulation led me to invite someone to have not 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"; my own poor articulation led me to invite someone to have not lunch, lunch, but but a lesbian a lesbian.) Genie Gertz, Miss Deaf New York, the daughter of Russian Jewish parents who emigrated when she was ten, delivered an eloquent monologue about finding freedom in the United States-which included, for her, the move from being a social misfit in a country that is not easy on disability to being Deaf and proud. It seemed like such a striking and radical idea that one might be deaf and glamorous: an American dream.

At 2:30 a.m. night after night, I was still up, conversing. One deaf sociologist I met was writing a thesis on deaf good-byes. Before the invention in the 1960s of teletypewriters, or TTYs, which allowed deaf people to type messages to one another pre-Internet, the deaf could communicate only by letters, telegrams, or personal appearances. You could take two days just inviting people to a small 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 on not leaving.

Alec Naiman, a member of the Deaf Pilots Association, was a world traveler until a crash in 2005, occasioned by ground crew who forgot that they were communicating with a deaf pilot, left him seriously injured. When I met him, he was fresh from a trip to China. "I met some Deaf Chinese people my first day, and I went to stay with them," he said. "Deaf people never need hotels; you are always given a place to stay with other Deaf people. Though we used different signed languages, these Chinese Deaf people and I could make ourselves understood; and though we came from different countries, our mutual Deaf culture held us together. By the end of the evening we'd talked about Deaf life in China, and about Chinese politics." I nodded. " Deaf life in China, and about Chinese politics." I nodded. "You couldn't do that in China," he said. "No hearing person could. So who's disabled then?" Disconcerting though it may sound, it was impossible, at the NAD convention, not to wish you were Deaf. I had known that Deaf culture existed, but I had not guessed how heady it is. couldn't do that in China," he said. "No hearing person could. So who's disabled then?" Disconcerting though it may sound, it was impossible, at the NAD convention, not to wish you were Deaf. I had known that Deaf culture existed, but I had not guessed how heady it is.

How to reconcile this Deaf experience with the rest of the world? MJ Bienvenu laid the groundwork for the bilingual and bicultural approach, commonly referred to as Bi-Bi, used at both the elementary and secondary model schools on the Gallaudet campus. In a Bi-Bi curriculum, students are taught in Sign, then learn English as a second language. Written English is afforded high priority; many students perform on par with their hearing counterparts. On average, schools employing a solely oral approach graduate students at eighteen who read at a fourth-grade level; students from Bi-Bi schools often read at grade level. Spoken English is taught as a useful tool within the Bi-Bi system, but is not a primary focus.

MJ, in her early forties when we first met, has signing so swift, crisp, and perfectly controlled that she seems to be rearranging the air into a more acceptable shape. She has been one of the most vocal and articulate opponents of the language of disability. "I am Deaf," she said, drawing out the sign for "Deaf," the index finger moving from chin to ear, as though she were tracing a broad smile. "To see myself as Deaf is as much of a choice as it is for me to identify as a lesbian. I am living my cultures. I don't define myself in terms of 'not hearing' or of 'not' anything else. Those who learn forced English while being denied Sign emerge semilingual rather than bilingual, and they are disabled. But for the rest of us, it is no more a disability than being Japanese would be." Deaf of deaf, with deaf sisters, she manifests a pleasure in American Sign Language that only poets feel for English. "When our language was acknowledged," she said, "we gained our freedom." Freedom Freedom-clenched hands are crossed before the body, then swing apart and face out-was like an explosion as she signed it. "There are many things that I can experience for which you have no equivalent," she said.

This is tricky territory. Some argue that if being deaf is not a disability, deaf people should not be protected under the Americans with Disabilities Act (ADA) and should not have the right to various mandated accommodations: translators in public-service venues, relay interpreters on telephone exchanges, captions on television programs. None of these services is automatically available to people in the United States who speak only Japanese. If deafness is not a disability, then on what basis does the state provide for separate schools, and on what basis does it provide Social Security disability insurance? The writer Harlan Lane, who teaches psychology at Northeastern, said, "The dilemma is that deaf people want access and as citizens in a democracy have a right to access-access to public events, government services, and education-but when they subscribe to the disability definition in order to gain access, they undermine their struggle for other rights-such as an education for deaf children using their best language, an end to implant surgery on those children, and an end to efforts to discourage deaf births in the first place." Lane, who teaches psychology at Northeastern, said, "The dilemma is that deaf people want access and as citizens in a democracy have a right to access-access to public events, government services, and education-but when they subscribe to the disability definition in order to gain access, they undermine their struggle for other rights-such as an education for deaf children using their best language, an end to implant surgery on those children, and an end to efforts to discourage deaf births in the first place."

I met many deaf individuals who said that being deaf is of course a disability. They were indignant at the thought of a politically correct group suggesting that their problems weren't problems. I also met deaf people who subscribed to the old deaf self-hatred, who were ashamed and saddened when they gave birth to deaf children, who felt they could never be anything more than second-class. Their unhappy voices cannot be forgotten; in some ways, it doesn't matter whether their ears are cured or their self-image is cured, but they are out there in numbers and they need help from someone.

Luke and Mary O'Hara, both hearing, married young, moved to a farm in Iowa, and started to have children immediately. Their first, Bridget, was born with Mondini malformation, a syndrome in which the cochlea is not fully formed. It is associated with degenerative deafness and other neurological impairments, including migraine headaches and, because it impinges on the vestibular system, poor balance. Bridget's hearing loss was diagnosed when she was two; the Mondini diagnosis came many years later. Luke and Mary were advised to raise her just like any other child, and she desperately tried to figure out oral communication and lipreading without any special education. "My mom labeled everything in the house so I could see what words went with what things, and she made me use full sentences, so I have good spoken English compared to other deaf people," Bridget said. "But I could never find confidence in myself. I never said anything that didn't get corrected." The difficulties in the means of communication intersected with family deficits in the content of communication. "I didn't know how to express my feelings," Bridget said, "because my parents and sisters didn't."

Bridget had three younger sisters. "My sisters would go 'Duh! You're so stupid!' My parents' body language made it clear they thought the same thing. At some point, I just stopped asking questions." Bridget was so roundly teased for her errors that she came to suspect even her most powerful intuitions, which left her profoundly vulnerable. "I was raised as a Catholic," Bridget said, "so I depended on whatever adults told me and took it at face value." We all live in accordance with the norms we pick up socially; stripped of such norms, we can regulate neither ourselves nor others. The only person whom Bridget trusted unconditionally was her sister Matilda, two years younger than she. told me and took it at face value." We all live in accordance with the norms we pick up socially; stripped of such norms, we can regulate neither ourselves nor others. The only person whom Bridget trusted unconditionally was her sister Matilda, two years younger than she.

Bridget was the first deaf person to attend her school. Since she had never learned Sign, there was no point having an interpreter, and she had to lip-read all day. Bridget would come home from school exhausted from it, and because she was a good reader in written English, she would curl up with a book. Her mother would tell her to put down the book and play with her friends. When Bridget said she didn't have any friends, her mother would say, "Why are you so angry?" Bridget remembered, "I didn't realize that there was a Deaf culture out there. I just thought I was the stupidest person in the world."

Bridget and her three younger sisters were subject to their father's violent temper. He would whip the girls with a belt. Bridget preferred outdoor chores to indoor ones, and she often helped her father in the yard. One day, they came in from raking, and Bridget went upstairs to take a shower. A minute later, her father, naked, stepped into the shower with her. "I was nave in many ways because I didn't really have communication with anyone," she recalled. "But I somehow knew this was not right. But I was afraid." In the months that followed, Luke began to touch her, then forced her into submissive sexual acts. "At the beginning, I would question my father. He would escalate the physical abuse, and I would get whipped. I blame my mother almost more, for not doing anything." About that time, Bridget walked in on her mother in the bathroom, holding a bottle of pills. When Mary saw Bridget, she poured the pills down the toilet. "After I got older," Bridget said, "I realized she was that that close." close."

When Bridget was in ninth grade, her grandparents took all the grandkids except her to Disney World; she had gone previously, and it was the others' turn. Bridget's mother went along, so Bridget was left home with her father. "I now have no memory whatsoever of that week," Bridget said. "But I apparently told Matilda about it when she got back from Disney World, and she later said she couldn't have anything to do with Dad, because of what he did to me." I wondered whether the abuse was linked with her deafness. "I was the easier mark," Bridget said. A friend of Bridget's suggested, "Her father believed that she would never say a word because she was deaf. That simple."

Bridget's marks started to slip in tenth grade. More and more material was in lectures rather than in reading, and she couldn't follow what was going on and was being tortured by classmates. Every time she went to the bathroom, she'd get beaten up by a gang of girls; she came home one day with a gash on her face that required stitches. Soon, the girls started dragging her to the janitor's closet between classes, where boys would take advantage of her sexually. "What angered me the most was adults," she said. "I tried to tell them. They wouldn't believe me." When she came home with her shin cut open and needed stitches again, her father called the school, but Bridget couldn't hear what he said and no one told her. home one day with a gash on her face that required stitches. Soon, the girls started dragging her to the janitor's closet between classes, where boys would take advantage of her sexually. "What angered me the most was adults," she said. "I tried to tell them. They wouldn't believe me." When she came home with her shin cut open and needed stitches again, her father called the school, but Bridget couldn't hear what he said and no one told her.

Bridget began having attacks of vertigo. "I now know that is a symptom of Mondini malformation. But I can't help wondering how much was also because of all the fear." Someone asked Bridget if she wished she were hearing, and she said she really didn't; she wished she were dead. Finally, she came home from school one day and announced that she was never going back. That night, her parents told her that there was a deaf school just forty-five minutes away from their house, which they had never mentioned because they wanted her to be part of "the real world." Bridget enrolled at fifteen. "I learned to sign fluently in a month," she said. "I started blossoming." Like many other deaf schools, this one had a low standard of education, and Bridget was academically ahead of her peers. She had been unpopular at her previous school because she was seen as an idiot. She was unpopular at this one because of her academic prowess. "Nonetheless, I became outgoing and made friends for the first time," she recalled. "I started caring about myself and taking care of myself."

Bridget had tried to get her mother to leave her father, and her mother had always "played the Catholic card," but after Bridget went off to college at NYU, her parents announced plans to divorce. "My mother had felt that I needed to have both of them," Bridget said. "Once I left, I guess she felt free."

In the years that followed, Bridget's headaches escalated; several times, she blacked out and collapsed. When she finally went to a doctor, he told her she needed immediate surgery for her malformation. She told him her symptoms were probably psychosomatic, and he was the first person to say to her, "Don't be so hard on yourself." Bridget eventually finished her degree and got a job in finance, but five years later, the episodes intensified again. Her neurologist told her not to work more than twenty hours a week. She returned to school, qualified in hospital administration, and did an internship at Columbia Presbyterian Hospital in New York, but she soon collapsed again, and her neurologist told her it was too dangerous to continue working. "The doctor told me I was going to destroy myself."

In her thirties, Bridget began having vision problems. She was wearing extremely powerful hearing aids, and they were amplifying the sound so much that they were stimulating her ocular nerve, causing her vision to blur. Her doctor recommended a cochlear implant. He thought it might help her migraines as well. Bridget had the procedure and is now able to understand some speech. "I love my implant," she told me. Her daily headaches became weekly. Her vision returned to normal. She has taken volunteer jobs, but employers want consistency, and her symptoms are unpredictable. "I so much want that stimulating feeling of being productive," she said. "But I have a disability, and either I can let it destroy me, or I can learn to enjoy my life. I would have liked to have kids, but how can you have kids when you know you might just get symptoms and have to stop everything?" sound so much that they were stimulating her ocular nerve, causing her vision to blur. Her doctor recommended a cochlear implant. He thought it might help her migraines as well. Bridget had the procedure and is now able to understand some speech. "I love my implant," she told me. Her daily headaches became weekly. Her vision returned to normal. She has taken volunteer jobs, but employers want consistency, and her symptoms are unpredictable. "I so much want that stimulating feeling of being productive," she said. "But I have a disability, and either I can let it destroy me, or I can learn to enjoy my life. I would have liked to have kids, but how can you have kids when you know you might just get symptoms and have to stop everything?"

In 1997, Bridget's mother, dying of cancer, was given ten weeks to live. She was too sick to be alone. The three hearing sisters had families and couldn't deal with her, so Mary came to New York, to Bridget's small apartment. She lived another eighteen months. The burden of what was unsaid became intolerable. "I didn't get into the sexual, but I did talk about the physical abuse," Bridget said. "She started crying, but she wasn't ready to admit her part." When the care got to be more than Bridget could handle, Matilda moved in to help. "Matilda and I would talk at night, and Matilda talked about the sexual abuse," Bridget recalled. "It had a real impact on her, even though it happened to me and not to her." Matilda's anger was terrifying to Bridget-even though much of it was on Bridget's behalf.

Shortly before Mary died, Bridget's aunt called Matilda, saying that Mary was imagining crazy things in the hospital, weeping desperately about how Bridget had been sexually abused by her father and Mary hadn't done anything about it. "So my mother never apologized to me," Bridget said. "But she knew what happened, and she apologized to someone."

A year later, Matilda got divorced. "I didn't hear from her for almost two months," Bridget said. "Then she came to town, and I knew she was depressed. She said, 'I should have been the one who died.'" A few weeks later, Bridget learned that Matilda had hanged herself. Bridget explained to me, "I feel that I let her down. That my problems and my deafness and my sexual abuse were a burden on her. I'd said so many times, 'Matilda, any problem you have, talk to me. I know I've got enough problems of my own, but I'm always there for you.'"

Bridget's two remaining sisters have both learned Sign and taught it to their children; they now have videophones so everyone can be in touch. When one lost her husband to leukemia, she made sure there were interpreters at the service. They organize a family trip every year, which includes Bridget's father and Bridget. I wondered how Bridget could tolerate it. "He's old now," she said, "and harmless. What he did to me is a long time ago." Then she began to weep quietly. "If I didn't go, my sisters would want to know why. They have no idea what happened; they were much younger than Matilda and me. What would happen if I told my sisters?" She stared out the window for a long, long time. "What happened when I told Matilda?" she finally asked me. She shrugged her narrow shoulders. "A week in Disneyland every year-it's really a small price to pay." could tolerate it. "He's old now," she said, "and harmless. What he did to me is a long time ago." Then she began to weep quietly. "If I didn't go, my sisters would want to know why. They have no idea what happened; they were much younger than Matilda and me. What would happen if I told my sisters?" She stared out the window for a long, long time. "What happened when I told Matilda?" she finally asked me. She shrugged her narrow shoulders. "A week in Disneyland every year-it's really a small price to pay."

Shortly after Bridget shared her history with me, the New York Times New York Times broke the story of the Reverend Lawrence C. Murphy, who had admitted to sexually abusing deaf boys at a Catholic boarding school in Wisconsin for twenty-two years. "Victims tried for more than three decades to bring him to justice," the broke the story of the Reverend Lawrence C. Murphy, who had admitted to sexually abusing deaf boys at a Catholic boarding school in Wisconsin for twenty-two years. "Victims tried for more than three decades to bring him to justice," the Times Times wrote. "They told other priests. They told three archbishops of Milwaukee. They told two police departments and the district attorney. They used sign language, written affidavits and graphic gestures to show what exactly Father Murphy had done to them. But their reports fell on the deaf ears of hearing people." This story, of deaf children being abused, is ubiquitous, and Bridget was rare only in being willing to tell me about it. It's an open secret that deaf kids have trouble telling their stories. When a Deaf theater group did a piece in Seattle about incest and sexual abuse, they sold out an eight-hundred-seat auditorium, and they hired counselors to wait outside the theater. Many women and men broke down in tears and ran out during the performance. "By the end of the show, half the audience was sobbing in the arms of those therapists," one person who attended said. wrote. "They told other priests. They told three archbishops of Milwaukee. They told two police departments and the district attorney. They used sign language, written affidavits and graphic gestures to show what exactly Father Murphy had done to them. But their reports fell on the deaf ears of hearing people." This story, of deaf children being abused, is ubiquitous, and Bridget was rare only in being willing to tell me about it. It's an open secret that deaf kids have trouble telling their stories. When a Deaf theater group did a piece in Seattle about incest and sexual abuse, they sold out an eight-hundred-seat auditorium, and they hired counselors to wait outside the theater. Many women and men broke down in tears and ran out during the performance. "By the end of the show, half the audience was sobbing in the arms of those therapists," one person who attended said.

The story of Megan Williams and Michael Shamberg lies at the other end of the spectrum. At sixty, Megan has the windblown good looks and the liberal sensibilities of Annie Hall-she's an idealist for whom idealism seems to have worked out, a woman who has made meaningful documentaries even though she's lived in the thick of the Los Angeles commercial-movie world. Where she is pragmatic, Michael Shamberg, the film producer to whom she was long married, is fond of abstractions; where she is always energized, he is somewhat aloof; where she is sparkling and quick, he is meditative and intellectual. They are both take-charge people. As the Deaf activist Jackie Roth said, "Megan looked at the world and didn't like a lot of what she saw, so she took it in her hands and fixed it."

When their son, Jacob, born in 1979, was eight months old, Megan began to suspect that he was deaf. The pediatrician said he had blocked eustachian tubes. Megan started banging pots and pans that night, but Jacob did not respond. She brought him back to the doctor, who said, "Okay. I'm going to blow up some balloons, stand behind him, and pop them with a hypodermic needle. You watch Jacob's eyes and see if they blink." Megan said, "Every time he popped the balloon, eustachian tubes. Megan started banging pots and pans that night, but Jacob did not respond. She brought him back to the doctor, who said, "Okay. I'm going to blow up some balloons, stand behind him, and pop them with a hypodermic needle. You watch Jacob's eyes and see if they blink." Megan said, "Every time he popped the balloon, my my eyes blinked, and I said, 'There's got to be a more sophisticated test.'" At LA Children's Hospital, Jacob was officially diagnosed. eyes blinked, and I said, 'There's got to be a more sophisticated test.'" At LA Children's Hospital, Jacob was officially diagnosed.

Megan found a class on deaf education at California State University, Northridge, a university with a large deaf population. "There was a panel of parents who had deaf children. These mothers would just weep; then I would learn that their child was thirty. I thought, I am not going to be unhappy about this. I wish it weren't this way, but it is, and I am going to figure it out." Megan and Michael began hunting down deaf adults. "We would have them over for brunch and say, 'How were you raised, what did you like, what didn't you like?'" Megan recalled. She invented a primitive home sign language to use with Jacob, and she offered one of the visitors some pancakes, making a circle with her two forefingers and thumbs. The guest said, "We need to get you some lessons. You just offered me some pussy."

Michael said, "We learned that successful deaf adults aren't self-pitying. We realized that we had to immerse ourselves in that culture because that was where our child was going to live." The most urgent question was what to do about giving Jacob language. When Jacob was a year old, Megan and Michael went to the John Tracy Clinic, an oral-only program founded by Spencer Tracy for his deaf son. It was considered the preeminent institution for deaf children on the West Coast. "It was painted in discarded hospital green," Megan said. "There were pictures of Mrs. Tracy with Richard Nixon on the wall." Michael described the place as "rabidly oral." Megan had picked up some Sign, and in a conference at the Tracy Clinic, she said to the instructor, "Let's just sign, since it's only you and me and Jacob." The instructor demurred, but told her that Jacob was smart and would be able to say apple apple in a year. Megan replied that her daughter at that age could say, "Mommy, I had a bad dream," and that she expected the same for her son. The instructor said, "Your expectations are too high." That was the end of Jacob and the Tracy Clinic. in a year. Megan replied that her daughter at that age could say, "Mommy, I had a bad dream," and that she expected the same for her son. The instructor said, "Your expectations are too high." That was the end of Jacob and the Tracy Clinic.

Megan was struck by how many of the deaf people she invited to brunch had no real relationships with their parents because there had never been fluent communication at home. So Megan and Michael hired a woman to teach the whole family to sign, and she moved in with them so that they could all learn as quickly as possible. "You're always knocking glasses over at dinner," Megan said. "Then it clicks in. It's linguistic, and also three-dimensional and physical." When Jacob was two and a half, Megan was trying to dress him and he was fighting her. He signed, "Scratchy and itchy," and she realized then how important it was for them to share a language; what had seemed like willfulness turned out to be perfectly rational behavior. Michael mastered finger spelling and a pidgin Sign that worked for him and for Jacob. It's linguistic, and also three-dimensional and physical." When Jacob was two and a half, Megan was trying to dress him and he was fighting her. He signed, "Scratchy and itchy," and she realized then how important it was for them to share a language; what had seemed like willfulness turned out to be perfectly rational behavior. Michael mastered finger spelling and a pidgin Sign that worked for him and for Jacob.

Megan set aside her work to focus on Jacob's education. She called Gallaudet for advice. "I got the switchboard operator and said, 'I'm just looking for someone I can talk to about educating little children out here in LA.'" The operator suggested Carl Kirchner, a CODA who signed fluently and had just moved to the West Coast. Megan took Jake up to Kirchner's house. "I walk in and hands are flying," Megan said. "Jacob is just wide-eyed." When Jacob saw Carl's two daughters, he made the sign for "girls," and Megan said, "We were off and running." Kirchner had done parent workshops in the seventies and called them Tripod. Megan suggested setting up an advice hotline under the Tripod name. In that pre-Internet time, someone would call the Tripod number and say, "My child is deaf, and I need a dentist, and I'm in Memphis." Megan and Kirchner would contact deaf people and their families in Memphis and find a dentist who knew Sign. Someone else would say, "My child is deaf and I'm afraid he can't read, and I'm in Des Moines." So they would find a deaf-friendly reading specialist in Des Moines. Around this time Jacob, age five, asked Megan, "Are you deaf?" and she said she was not; he asked, "Am I deaf?" and she said he was; then he signed, "I wish you were deaf." Megan said, "That was such a healthy response. Not 'I wish I were hearing,' but 'I wish you were deaf.'"

Megan went to look at deaf schools. At Riverside, students were learning how to shop for food. "It was vocational training or rehab training. It wasn't school." There was signed education for deaf children in the Los Angeles public school system, but when Megan visited a classroom, she was unimpressed. "The teacher was signing, but the content was horribly dull. I went back to Michael and Carl and I said, 'We not only need a hotline, we need a school.'" They found three other interested families and a little preschool building; then they found enough students to make up a class and needed a teacher. Megan wanted someone trained in both Montessori and Deaf education; only three people in the country qualified, and one of them became the first teacher in the Tripod school program.

Megan was constantly caught in the snares of Deaf politics. She was told that she couldn't do all this because she wasn't Deaf enough. "Well, I wasn't deaf, period," she said. Jacob was considered not Deaf enough because he didn't have deaf parents. One activist said to Megan, "What you're trying to do is very noble, but the best thing would be to give your child to a Deaf family and let them raise him." Megan ignored these assaults. She invented reverse mainstreaming, in which nondisabled children are put in a classroom that is focused on the needs of disabled children and learn as the disabled students learn. At Tripod, every classroom had two teachers, one with deaf-education teaching credentials, for ten deaf and twenty hearing students. Everyone signed. Megan sought out deaf-of-deaf pupils because she wanted their signing level. I wasn't deaf, period," she said. Jacob was considered not Deaf enough because he didn't have deaf parents. One activist said to Megan, "What you're trying to do is very noble, but the best thing would be to give your child to a Deaf family and let them raise him." Megan ignored these assaults. She invented reverse mainstreaming, in which nondisabled children are put in a classroom that is focused on the needs of disabled children and learn as the disabled students learn. At Tripod, every classroom had two teachers, one with deaf-education teaching credentials, for ten deaf and twenty hearing students. Everyone signed. Megan sought out deaf-of-deaf pupils because she wanted their signing level.

The project required enormous amounts of money, and Michael set himself the task of securing it. He had just finished producing The Big Chill, The Big Chill, and the cast all went on to other movies, and he persuaded them to lobby the studios to give Tripod the premieres. "Michael worked on the finances and supported me, but he was building a career, and I gave my lifeblood to Tripod," Megan said. Megan wanted to place Tripod within the public school system. The Los Angeles school district was annoyed by the challenge to their deaf-education program, so she moved her project to Burbank. "Then people started moving to Burbank because we were there," she said. "Burbank became a hotbed of Deaf culture. Even today, you can go into a McDonald's signing and someone will start interpreting for you." and the cast all went on to other movies, and he persuaded them to lobby the studios to give Tripod the premieres. "Michael worked on the finances and supported me, but he was building a career, and I gave my lifeblood to Tripod," Megan said. Megan wanted to place Tripod within the public school system. The Los Angeles school district was annoyed by the challenge to their deaf-education program, so she moved her project to Burbank. "Then people started moving to Burbank because we were there," she said. "Burbank became a hotbed of Deaf culture. Even today, you can go into a McDonald's signing and someone will start interpreting for you."

People who don't use spoken language are often slow to grasp appropriate usage in written language, which is transcribed from a system that is foreign to them. The academic program that Megan put together at Tripod was unprecedented in addressing this challenge. "The biggest curse of deafness is illiteracy," Megan said. "Jacob writes better than I do." The Tripod children consistently tested at grade level or better, and the social context was unique. "There's so many people signing-teachers, hearing students, siblings-that the kids are integrated on every level," Megan said. "They're on the student council, they're playing sports."

Jacob said, "Tripod is about a revolution. I had hearing friends, deaf friends, didn't matter. But Tripod treats the deaf students like we don't actually have special needs, and, really, we do. It was helpful to me, but at some level, it's about my mother, not about me. To be fair, deaf schools at that time were all bad. Tripod was better than most, but there were not enough teachers, not enough money, not enough interpreters. I was really lucky, I know that, with this amazing family, but I've still got a lot of complaints."

Megan sighed when I recounted this. "There were a couple times when I had to do what was right for the program over doing what was right for my son," she said. "That was tough." when I had to do what was right for the program over doing what was right for my son," she said. "That was tough."

Michael has an elegant philosophical resolution about the tensions that led to their 1991 divorce. "Megan became Tripod," he said. "One, she genuinely wanted to help our child. Two, it was a calling. A worthy calling, but a consuming one. Ultimately, our relationship would have fallen apart for a number of reasons. But she was so obsessed with this thing that it began to eat into our marriage. The institution sometimes seemed more important to her than Jacob's individual education. Instead of this gigantic, groundbreaking program, we could have put together a group of three or four parents who could have afforded the tuition at a really good private school with interpreters. I wish Jacob had gotten more intellectual stimulation, but that said, I think he tends to demonize it a little bit."

Jacob saw Tripod's greatest strengths as being for the hearing kids. Yet Jacob's hearing sister, Caitlin, who grew up in the program, envied the way her family's life revolved around her brother's language and culture. More fluent in Sign than Megan or Michael, she came home from school in fourth grade and said, "Our class project is for each of us to teach the first graders something." Megan said, "Really, what are you going to teach?" Caitlin said, "Not sign language!"

Jacob went to the National Technical Institute for the Deaf at Rochester Institute of Technology, then dropped out after a year and worked at a resort in Hawaii. Then he went to Gallaudet. "I was struggling with depression, and honestly, Gallaudet's a really bad school," Jacob said. "But something important happened. Before, I'd looked down on deafness; I had a lot of self-hatred. At Gallaudet, I started meeting a lot of great deaf people who had the same interests I do. I don't really have that capital-D Deaf Pride, but I cherish the Deaf culture, and it's a place where I am empowered." For the first time, Jacob said, he felt normal. Megan regretted this timetable: "He was in his mid-twenties by then. I see that as a failure on my part." Deaf Pride, but I cherish the Deaf culture, and it's a place where I am empowered." For the first time, Jacob said, he felt normal. Megan regretted this timetable: "He was in his mid-twenties by then. I see that as a failure on my part."

I met Jacob shortly after he graduated from the School of Visual Arts at twenty-eight. He had settled in New York, and both his parents came to see him frequently; despite speech therapy, he is unable to speak in a way that is consistently comprehensible. "I've been sorry for myself for a long time, for being deaf," Jacob said. "Last year I tried to kill myself. It was not that I wanted to die, but I felt like I had no control over my life. I had a really bad fight with my girlfriend, and I took a whole bottle of Klonopin. I just wanted to give up. I was in the hospital for three days, unconscious. When I woke up, the first thing I saw was my mom's face, and the first thing she said to me was 'Stop the world. I want to get off.' That's exactly how I felt." He sees a psychiatrist for medication; they sit side by side and type back and forth. The real trick, however, is finding a signing therapist. Jacob may have inherited his edge of despair from his father, who has struggled with depression through most of his adult life. "Then you mix in the deafness," Michael said. "But Jacob is tough. If the Holocaust came, he'd get so pissed off, he'd figure out a way to get through it. I hope he figures a way through normal life." That's exactly how I felt." He sees a psychiatrist for medication; they sit side by side and type back and forth. The real trick, however, is finding a signing therapist. Jacob may have inherited his edge of despair from his father, who has struggled with depression through most of his adult life. "Then you mix in the deafness," Michael said. "But Jacob is tough. If the Holocaust came, he'd get so pissed off, he'd figure out a way to get through it. I hope he figures a way through normal life."

Megan has none of Michael's or Jacob's depressiveness; she is a woman of action. But she still has a sadness about her. "I'm sixty years old," she said, "and I sometimes wonder what I would have done if he'd been hearing." Michael said he didn't allow himself that fantasy. "I think somehow Jacob's been selected to be deaf and fucking figure it out, and that's his path," he said. "I've wished he could hear things, but at another level, I never think about what it would be like if Jacob wasn't deaf. I don't know if he'd have been happier. I don't think I would. He's just my son."

I wondered why Jacob's sense of struggle persisted in the face of so much acceptance and love. Jacob said, "Three nights ago, I went out for drinks with the other people in a class I'm taking, and all of them are hearing, and we just wrote back and forth. But there is a point where they're all chatting, and I'm like, 'What's going on?' I'm lucky that they're open to being with me, but I'm still left out. I have a lot of hearing acquaintances. But, good friends? No. Deaf culture teaches me how to see the world, but it would make surviving the world a lot easier if I could hear. If I were going to have a Down syndrome child, I think I would abort. But what if my mom had found out I was deaf when she was pregnant and aborted me? I don't want to be racist, but walking alone at night, I see an unknown black person approaching, and I feel uncomfortable, even though I have black friends. I hate it. So it's the same when I make people uncomfortable because I'm deaf: I understand it, and I hate it. I just hate it."

Having a vision can be a lonely business, and no strategy can unfold in its full glory without other people to carry the banner. What Megan first imagined at Tripod was extended and refined by those who followed her. Chris and Barb Montan's younger son, Spencer, was born deaf a decade after Jacob. "I had never met a deaf person," Barb said, "so I can only describe it as free-falling." Chris is president of Walt Disney Music, and his whole life has been sound. When Spencer was diagnosed, he was "rocked, devastated." Chris said his mind went down blind alleys. "What's going to happen to him? How can I protect him? How much money should I set aside?" Barb contacted Tripod. "They said they would mail me a package right away, but I couldn't get through the weekend," Barb said. "So I went to the Tripod offices. Michael and Megan had had to create a net; I had one swoop out underneath me." "They said they would mail me a package right away, but I couldn't get through the weekend," Barb said. "So I went to the Tripod offices. Michael and Megan had had to create a net; I had one swoop out underneath me."

Barb went on, "In the beginning it's all sadness and woe and horror. My mother said, 'He'll end up in an asylum.' In her generation, you were deaf and dumb, you were sent away. But I had this gorgeous, blue-eyed son who just beamed at me. It didn't take long for me to say, 'Who has the problem here?' Because he was perfectly fine." The Montans decided almost immediately that they would learn to sign. "Spencer would take speech therapy, but we would learn his language and culture," Barb said. "I've got to go where he's going. I can't let any cognitive delay happen." Chris worried that the language gap would undermine his ability to be a good father. "I was scared that Spencer wouldn't know who I was as a person at the level of his older brother, who could hear my inflections. I said to Barb, 'We can't have Spencer feel like he grew up in a hearing household and got left out.'"

Deaf students from Cal State, Northridge, came over to instruct Spencer and his family in ASL. "They pulled into my driveway and began signing. 'Spencer, how are you? I see you have a car!'" Barb recalled, signing as she spoke. "I don't know how he knew it was language. But he was totally attentive. Week after week after week. 'Hello, how are you, are you ready to work?'" Barb and Chris created such a strong signing environment that Spencer didn't know he had a disability until he was four or five.

Barb has a nearly photographic memory and turned out to be a natural at Sign. Chris's years playing the piano made him extremely dexterous, and he became a fluent finger-speller. Spencer could interpret and understand his parents' signing as well as full-fledged ASL. "When he was born," Chris said, "I was working like crazy, building a company with Jeffrey Katzenberg and Michael Eisner. I could have gone to work for twenty hours a day. Barb turned to me early on and said, 'I think you're doing an okay job as a dad, and I know you're building your career at Disney, but I need more. I need you to be more of a person-a deeper person, a less selfish person.'" Chris told his colleagues at work that he'd have to cut back. Nils, the Montans' elder son, has been diagnosed with both severe asthma and attention deficit disorder. "I would say Nils had a harder time growing up," Barb said. "Spencer was easier. Nils is very cerebral, and Spencer is much more visceral, there's so much more kidding around, a tremendous amount of humor, play on words, play on signs."

Because public education does not begin until age five, Tripod has a privately funded Montessori preschool program for deaf and hearing children. Spencer's development in ASL was rapid; the hearing kids in the class learned nearly as fast. "Most disabled kids are always on the receiving end of help," Barb said. "What does that do for someone's self-esteem? But if a little hearing girl didn't know what to do in math, Spencer could help her." In the general population, she observed, you are learning to read until fourth grade, and you are reading to learn thereafter. The switching comes later for deaf children. "But once Spencer got it, did he ever take off," Barb said. privately funded Montessori preschool program for deaf and hearing children. Spencer's development in ASL was rapid; the hearing kids in the class learned nearly as fast. "Most disabled kids are always on the receiving end of help," Barb said. "What does that do for someone's self-esteem? But if a little hearing girl didn't know what to do in math, Spencer could help her." In the general population, she observed, you are learning to read until fourth grade, and you are reading to learn thereafter. The switching comes later for deaf children. "But once Spencer got it, did he ever take off," Barb said.

In 1982, Barb and a friend started Tripod Captioned Films, the first outfit that routinely captioned films to include all the nonverbal information: indications of music, of gunshots, of a ringing telephone or doorbell. When Spencer was nine, Lou Marino, a local youth coach, gave him a pitching lesson. Lou said, "I've coached for thirty years, how come I've never seen a deaf kid?" Lou and Barb set up the Silent Knights, which became a Southern California regional deaf baseball league. "He has incredible hand-eye coordination," Chris said. "He saw the ball better than other kids." Chris and Spencer practiced baseball together. "That was a way we talked," Chris said. "I would occasionally sign, but mostly we were sharing this thing. He had quiet confidence, and when he was the pitcher, the team would settle around him."

The Montans did consider cochlear implants. Chris said, "In 1991, I wasn't sure what way the technology was going to advance. If Spencer were newly diagnosed and thirteen months old today, I probably would implant him, and I say that knowing all the great Deaf people we've met, and as a strong supporter of Deaf culture. It's a different question today, medically and politically." If Spencer were to get an implant as a young adult, however, he would have to do auditory training to interpret the data it would produce. "He would lose a year of high school, when he is so socially on track and effective in his language," Barb said. "I don't think it would be worth it."

Spencer was refreshingly ecumenical about language, saying, "I know that my voice is useful, and I am glad to develop it. Mom and Dad went to take ASL classes so we could communicate. If they could learn ASL, I can do this, too. My main language is ASL. But by practicing and practicing, I don't need tutors to help me with my English. I work on my voice, and the kids at my school and in my baseball league work on signing. We want to live in one world." Barb has been frustrated by the antispeech sentiment in the Deaf world. "Spencer is fine signing with me the way I sign, with Chris the way he signs, with his deaf friends in fluent ASL. He is fully bilingual between written English and Sign." At the same time, she recognizes the deep importance of Deaf society. "Every culture, you want critical mass, and he's got it with his deaf friends. We all need our people." of Deaf society. "Every culture, you want critical mass, and he's got it with his deaf friends. We all need our people."

Barb eventually became president of Tripod. "Last night, this mom walked in whose son is four," Barb said. "She's got nothing but worries. Spencer was doing his chemistry homework-moles, fractals-and I held up the sheet and said, 'Your son will do this.'" Spencer said, "Parents of deaf kids should know not to be afraid, not to let their kid be afraid. My parents made sure I was never afraid."

Debates still rage about oralism versus manualism, and whether signed teaching should be conducted in American Sign Language or with techniques such as Total Communication or Simultaneous Communication, in which Sign and English are combined to allow teachers to sign while speaking. These methods seek to provide deaf children multiple avenues of communication; however, problems can arise when one attempts to merge unrelated grammars and syntaxes. English and ASL are different in structure; one can no more speak English while signing in ASL than one can speak English while writing Chinese. English is a sequential language, with words produced in defined order; the listener's short-term memory holds the words of a sentence, then takes meaning from their relationship. ASL is a simultaneous language in which individual signs are amalgamated into composite ones; one complex, fluid movement could mean, for example, "He moved from the East Coast to the West Coast." Each sign includes a hand shape, a location on or near the body where the shape is held, and a directional movement. Additionally, facial expressions serve not just to communicate emotions, but as structural components of individual signs. This compounding works well for short-term visual memory, which can hold fewer discrete images than auditory memory. If one needed to make first the sign for "he," then "moved," then "from," and so on, the mechanical effort would become tedious and the logic would disappear; the same unintelligible jumble would result if one needed to speak several different words simultaneously. Forms of manually coded English such as Signed Exact English, Pidgin Signed English, or Conceptually Accurate Signed English, which go word by word through a sentence as if it were being spoken in English, are usually preferred by those deafened postlingually, who often continue to think in spoken language; however, for children acquiring a first language, sign languages based on oral ones are cumbersome and confusing. A grammar inappropriate to the medium cannot be grasped intuitively.

Gary Mowl, former head of the ASL department at the National Technical Institute for the Deaf, in Rochester, often corrects his children's grammar and usage in ASL. "People ask why you need to teach ASL to people who are already native signers," Mowl said. "Why do you teach English to English-speaking students? So many people use the language badly." There is nonetheless great variety in ASL users' individual "voices": some move their hands and faces precisely, some extravagantly, some playfully, and some with great solemnity. ASL has evolved, too; films of people signing in the early twentieth century show a different and less nuanced use of language. grammar and usage in ASL. "People ask why you need to teach ASL to people who are already native signers," Mowl said. "Why do you teach English to English-speaking students? So many people use the language badly." There is nonetheless great variety in ASL users' individual "voices": some move their hands and faces precisely, some extravagantly, some playfully, and some with great solemnity. ASL has evolved, too; films of people signing in the early twentieth century show a different and less nuanced use of language.

Benjamin Bahan, a professor of ASL and Deaf Studies at Gallaudet, is deaf of deaf. He has described poignantly how he grew up thinking that his mother, who had an oral education, was the smart one, while his father, who had grown up manual, was a bit dim-witted. When he returned home after studying ASL at college, he realized that his father "signed beautiful ASL with grammatical features and structure," while his mother's ASL was substantially less fluent. ASL grammar is a locus of both precision and pride. Many Sign translators miss half of what is said, mistranslate, and lose the thread of the conversation; I found this myself as I worked with translators, many of whom had been drawn to ASL more for its similarity to theater than for its status as language. The grammar is so conceptually different from oral grammar that it eludes even many people who study it closely. Fluent translators can find it difficult to rearrange ASL structures into English ones, and vice versa, and lose the patterns of meaning. Accent and intonation tend to disappear entirely.

Hearing people often mistakenly assume that there is one universal sign language, but there are many. Due to the work of Laurent Clerc, ASL is closely related to French Sign Language; in contrast, ASL is very different from British Sign Language, which many ASL users contend is less sophisticated. "We don't have so many puns; we don't play with the words the way you do," conceded Clark Denmark, a lecturer in Deaf Studies at the University of Central Lancashire. "It's a more literal language. But it has strengths of its own." Some are concerned that the spread of ASL as a kind of lingua franca for deaf people will lead to the loss of other sign languages. No one has been able to assess how many sign languages there are, but we know of at least seven in Thailand and Vietnam; Iran has both Tea House Sign Language and Persian Sign Language; Canadians use both ASL and Quebecois Sign Language.

The issue of deafness in most societies is one of linguistic exclusion, and I was interested in the idea of a context in which Sign was universal. In the small village of Bengkala in northern Bali, a congenital form of deafness has persisted for some 250 years and at any time affects about 2 percent of the population. Everyone in Bengkala has grown up with deaf people, and everyone knows the unique sign language used in the village, so the gap between the experience of hearing and deaf people is narrower than perhaps anywhere else in the world. 2 percent of the population. Everyone in Bengkala has grown up with deaf people, and everyone knows the unique sign language used in the village, so the gap between the experience of hearing and deaf people is narrower than perhaps anywhere else in the world.

Bengkala is also known as Desa Kolok, or Deaf Village. When I visited in 2008, forty-six of the village's approximately two thousand residents were deaf. Because this deafness springs from a recessive gene, no one knows when it will emerge in his family. I met hearing parents with deaf children, deaf parents with hearing children, deaf families with deaf parents and children, deaf or hearing parents with a mix of deaf and hearing children. It's a poor village, and the general education level is low, but it has been even lower among the deaf. Kanta, a hearing teacher in the village, introduced a program in 2007 to educate the deaf of Bengkala in their own sign language, Kata Kolok; the first deaf class had pupils from ages seven to fourteen, because none had had any formal education previously.

The life of villages in northern Bali is based on a clan system. The deaf can both participate in and transcend their clans; for their children's birthdays, for example, they invite their own clan as well as the deaf alliance in the village, while hearing people would not invite anyone outside their clan. The deaf have certain traditional jobs. They bury the dead and serve as the police, though there is almost no crime; they repair pipes in the often troubled water system. Most are also farmers, planting cassava, taro, and elephant grass, which is used to feed cows. Bengkala has a traditional chief, who presides over religious ceremonies; an administrative chief, chosen by the central Balinese government to oversee government functions; and a deaf chief, traditionally the oldest deaf person.

I arrived in Bengkala with the Balinese linguist I Gede Marsaja, born in a neighboring village, who has studied Kata Kolok in depth. We climbed down into a canyon where a river rushed under a two-hundred-foot, sheer rock wall. Several deaf villagers were waiting for us by the water, where they keep a farm with a grove of rambutan trees, some elephant grass, and a variety of extremely hot peppers. Over the next half hour, the rest of Bengkala's deaf arrived. I sat on a red blanket at one end of a large tarp, and the deaf arranged themselves around the edge. People were signing to me, confident that I could understand. Gede translated and Kanta, the schoolmaster, provided further assistance, but to my surprise, I could follow fairly well and quickly learned a few signs. Whenever I used them, the entire group would break out in smiles. They seemed to have multiple levels and kinds of signing, because when they were signing to me, they were like a bunch of mimes, and I could follow their narratives clearly, but when they were signing to one another, I couldn't figure out what they were saying at all, and when they were signing to Gede, they were somewhere in between. of mimes, and I could follow their narratives clearly, but when they were signing to one another, I couldn't figure out what they were saying at all, and when they were signing to Gede, they were somewhere in between.

The Kata Kolok sign for sad sad is the index and middle fingers at the inside corners of the eyes and then drawn down like tears. The sign for is the index and middle fingers at the inside corners of the eyes and then drawn down like tears. The sign for father father is an index finger laid across the upper lip to suggest a mustache; the sign for is an index finger laid across the upper lip to suggest a mustache; the sign for mother mother is an upward-facing open hand at chest level supporting an imaginary breast. The sign for is an upward-facing open hand at chest level supporting an imaginary breast. The sign for deaf deaf is the index finger inserted into the ear and rotated; the sign for is the index finger inserted into the ear and rotated; the sign for hearing hearing is the whole hand held closed beside the ear and then opened while it is moved away from the head, sort of like an explosion coming out of the skull. In Kata Kolok, positive words usually involve pointing upward, while negative ones involve pointing downward; one villager who had traveled told the others that the raised third finger is a bad word in the West, so they flipped the sign and now use a third finger pointing down to indicate is the whole hand held closed beside the ear and then opened while it is moved away from the head, sort of like an explosion coming out of the skull. In Kata Kolok, positive words usually involve pointing upward, while negative ones involve pointing downward; one villager who had traveled told the others that the raised third finger is a bad word in the West, so they flipped the sign and now use a third finger pointing down to indicate horrendous horrendous. The vocabulary is constantly evolving, while the grammar is fairly static.

Second-generation language is always more sophisticated and ordered than first-generation, and a language of many generations acquires a clear architecture. Spoken language among farmers in northern Bali does not feature a large vocabulary, and neither does Kata Kolok. About a thousand signs have been definitely identified by scholars, but the deaf of Bengkala clearly know more signs than this and can combine existing signs to communicate new meanings. For educated Westerners, intimacy requires the mutual knowledge achieved as language unlocks the secrets of two minds. But for some people the self is expressed largely in the preparation of food and the ministrations of erotic passion and shared labor, and for such people the meaning embedded in words is a garnish to love rather than its conduit. I had come into a society in which, for the hearing and the deaf, language was not the primary medium through which to negotiate the world.

When we finished lunch, fourteen men put on sarongs, and two women donned fancy, lacy nylon blouses. Like most deaf people, they could feel the vibrations of the drum, and their dance included movements that seemed to flow from their mimetic language. They offered to show us the martial arts they use as the village security agents. I was interested in the way they mixed signing and the deployment of their hands and feet as weapons; one young man, Suarayasa, resisted joining in the demonstration until he was shamed into it by his mother, and the whole time he was showing us his abilities, he was also signing repeatedly "Look at me!" It was fierce but playful. The women dancers came around and gave everyone a Sprite, and then the men proposed a dip in the river, so we went skinny-dipping. The rock wall rose steep above us and long vines hung down, and the deaf men swung on them. I did somersaults in the water, others did headstands, and we set bait to fish for eels. Sometimes, one would swim underwater until he was right beside me, then shoot up out of the current. They continued to sign to me, and there was something exuberant, even joyful, about the communication. It seemed possible to contemplate this as an idyll, despite the poverty and disability of the villagers. around and gave everyone a Sprite, and then the men proposed a dip in the river, so we went skinny-dipping. The rock wall rose steep above us and long vines hung down, and the deaf men swung on them. I did somersaults in the water, others did headstands, and we set bait to fish for eels. Sometimes, one would swim underwater until he was right beside me, then shoot up out of the current. They continued to sign to me, and there was something exuberant, even joyful, about the communication. It seemed possible to contemplate this as an idyll, despite the poverty and disability of the villagers.

The next day, Kanta translated from Kata Kolok into Balinese, occasionally addressing me in his limited English; Gede translated Kanta's Balinese into English, occasionally signing in his limited Kata Kolok; and the deaf Bengkala villagers addressed me directly in animated Sign. Communication in this linguistic jumble was established through sheer force of collective will. There were limits to what one could ask because many grammatical structures couldn't be translated. For example, there is no conditional tense in Kata Kolok; the language also has no categorical words (such as animals animals or the abstract notion of or the abstract notion of name name), only specific ones (such as cow cow or someone's actual name); there was no way to ask or someone's actual name); there was no way to ask why why questions. questions.

I met the family of Santia, the deaf son of hearing parents, and his wife, Cening Sukesti, the deaf daughter of deaf parents. The two had been childhood friends. Santia was somewhat slow, whereas Cening Sukesti was vibrant, lively, and intelligent. Sukesti chose to marry a deaf man whose hearing parents owned enough land for them to work. Sukesti said, "I've never been jealous of hearing people. Life is no easier for them. If we work hard, we will get money, too. I take care of the cows, sow the seeds, boil the cassava. I can communicate with everyone. If I lived in another village, I might want to be hearing, but I like it here."

Three of Santia and Sukesti's four children were deaf. When their son Suara Putra was nine months old, hearing friends of his parents said he was hearing. At eleven months, he began to sign and is now fluent, though he feels more fluent in speech. As a young adult, Suara Putra often translates for his parents. He'd never want to give up his hearing: "I have two where most people have one," he said. But he maintained he could have been equally happy being deaf. Nonetheless he said, "I think my parents like having one hearing child. Not that they love me more, but I drink less and don't ask for money all the time. Yet I'd have less tension with them if I were like them." Sukesti said that Suara Putra signed even better than his deaf siblings because spoken language had made him more comfortable expressing complex ideas.

Another couple, Sandi and his wife, Kebyar, lived with their two deaf sons, Ngarda and Sudarma. Ngarda's hearing wife, Molsami, came from another village, and Ngarda was glad to have four hearing children. "We already have many deaf people here," he said emphatically. "If all of us are deaf, it's not good." Sudarma, on the other hand, insisted that he never would have married a hearing woman. "Deaf people should stick together," he said. "I want to live among deaf people, and I wanted deaf children." deaf sons, Ngarda and Sudarma. Ngarda's hearing wife, Molsami, came from another village, and Ngarda was glad to have four hearing children. "We already have many deaf people here," he said emphatically. "If all of us are deaf, it's not good." Sudarma, on the other hand, insisted that he never would have married a hearing woman. "Deaf people should stick together," he said. "I want to live among deaf people, and I wanted deaf children."

In this community, people talked about deafness and hearing much as people in more familiar societies might talk about height or race-as personal characteristics with advantages and disadvantages. They did not discount the significance of deafness nor underplay its role in their lives; they did not forget whether they were deaf or hearing and did not expect others to forget it, either. The deaf alliance in Bengkala is extremely free in every sense except geography; their freedom is predicated on a linguistic fluency shared only in their village. I had gone there to investigate the social constructionist model of disability, and I found that where deafness does not impair communication, it is not much of a handicap.

It is not possible to re-create in America a world of acceptance like that which greets deaf children in Bengkala, but parents such as Apryl and Raj Chauhan succeed in building community to an extraordinary degree, negotiating the diplomatic challenges of ingratiating themselves in a culture that regards them with suspicion. From a privileged African-American background, Apryl grew up among artists; expression comes readily to her. She radiates determination, purpose, and a winning toughness. Raj is of mixed Indian and Pakistani background, handsome and smooth; you can imagine that he will still seem this young when he is old. He works in Internet sales, and he speaks with confident ease. Many of the parents of deaf children whom I met seemed anxious, but the Chauhans were relaxed; their innate sense of hospitality had disarmed a Deaf world that other parents had found forbidding.

When Zahra Chauhan was born in 2000, Apryl and Raj were young and struggling and had little experience of babies. The LA hospital where their daughter was born didn't perform hearing screenings on newborns. When Zahra was three months old, a fire in the building where the Chauhans lived set off shrieking alarms; Apryl ran to the baby's room and found her sound asleep. The pediatrician told Apryl that newborns can sleep through anything. As Zahra reached the age at which other children babbled, she wasn't babbling; the only sounds she made were little grunts. Apryl and Raj would try to test her, clapping when she was turned away. "Sometimes she would respond and sometimes she wouldn't," Apryl said. "Looking back, she most likely saw us out of the corner of her eye." At twenty months, Zahra had produced some version of she wouldn't," Apryl said. "Looking back, she most likely saw us out of the corner of her eye." At twenty months, Zahra had produced some version of mama mama and and dada, dada, but no other words; the pediatrician said that many children don't talk until they are three. but no other words; the pediatrician said that many children don't talk until they are three.

When Apryl took Zahra in for her two-year checkup, their regular pediatrician was out sick, and the substitute immediately said that they should have a hearing test. "Those two years that we lost would have been time for us to educate ourselves, for Zahra to have exposure to language, and for getting her hearing aids," Apryl said with regret. When the news came, Apryl was saddened by it, but Raj was not. He explained, "Apryl wanted to go through the stages of emptiness, fear, sadness, pain, uncertainty, and I wasn't there. This was just something to add to the list of stuff we had to deal with."

Early intervention in Los Angeles County was available for children from birth to three, so Zahra would be eligible for only a year of free services. "I had to educate myself as quickly as possible to know what we wanted," Apryl said. The audiologist said Zahra had some meaningful residual hearing in low registers, so a cochlear implant was not an obvious choice. Apryl said, "I want her to be confident in who she is. If she decides one day that she wants an implant, that's great. But I couldn't make that decision for her." Zahra acquired transpositional aids that drop all the higher-pitched sounds down into the low register where her residual hearing lies. But Apryl knew that hearing aids weren't going to make Zahra hear. "I had lost two years of communicating with my daughter," she said. "We started off with the repetition of 'Apple. Apple.' We were told it takes a thousand times for a deaf child before they get it. So it was all day long drilling things. 'Water. Water. Book. Book. Shoe. Shoe.' She might repeat something occasionally, but it didn't take me long to think, 'This is not good enough.' So within a month, we decided to sign. I could literally feel that a different part of my brain was working because I would get splitting headaches." Raj, who already spoke English, Hindi, a little Spanish, and Italian, said, "I always say it's like a Google search: 'Malibu, want, store, juice,' all at once." At first, Apryl and Raj were learning faster than Zahra, which allowed them to teach her, but Zahra soon pulled ahead.

Even though ASL is Zahra's primary language, Apryl and Raj wanted her to have as much fluency in speech as she could reasonably achieve, and they arranged for her to have speech therapy. When she was still making no progress at five, they found a new therapist, who asked Apryl what Zahra liked to eat. Apryl said she ate four foods: cereal, peanut butter, bread, and oatmeal. The therapist observed that those were all soft foods. "She has an oral motor problem as well," she explained. "Her tongue doesn't have the strength to control sounds." Apryl and Raj started doing tongue exercises with Zahra. The process was much like that for building up any other muscle-but the fibrous tongue is actually the strongest muscle per inch in the body; if it were the size of a biceps, you could pick up a car with it. The exercises often used a tongue depressor, pushing the tongue around, building it up. Zahra was also told to chew gum as much as possible. The change was rapid. Zahra had always refused to eat meat, but once she had strengthened her tongue and got used to chewing, she was all for it. Her ability to produce sounds increased dramatically. "Her tongue doesn't have the strength to control sounds." Apryl and Raj started doing tongue exercises with Zahra. The process was much like that for building up any other muscle-but the fibrous tongue is actually the strongest muscle per inch in the body; if it were the size of a biceps, you could pick up a car with it. The exercises often used a tongue depressor, pushing the tongue around, building it up. Zahra was also told to chew gum as much as possible. The change was rapid. Zahra had always refused to eat meat, but once she had strengthened her tongue and got used to chewing, she was all for it. Her ability to produce sounds increased dramatically.

All this progress has come with considerable effort. Apryl has been a stay-at-home mom so that she can focus more fully on Zahra. "Even to tell us, 'I need to go to the bathroom,' means she has to stop, turn around, get our attention," Apryl said. "It's a full-body language. We're always giving her access to sound. If there's a bird, Raj says, 'Did you hear the bird?' Or an airplane, or a helicopter. Some days, she can identify instruments in music-a horn, flute, piano-with the hearing aids. She hears more than she's technically supposed to."

Every Deaf person I met in California seemed to have been to parties at Apryl and Raj's place. "We get invited to a lot of Deaf events and vice versa," Apryl said. "I heard about a deaf man who worked for NASA, a great scientist, and I invited him over. People in the Deaf community are almost always willing to meet with hearing parents. But you have to reach out to them. They're not going to come to you." I had met so many parents who were intimidated by Deaf adults, and I wondered what had given Apryl and Raj the courage to break into that world. Raj explained that he had grown up in a small town in Georgia where the KKK marched on the weekends, and black and white kids sat at different tables in the lunchroom. "Deaf culture and black culture and Indian-you get flexible," he said. Raised by a mother with a strong sense of African-American history, Apryl was an activist as a kid. "I had gay friends, so we set up gay organizations at school. When I had a deaf child, it was, like, here's another one for me to be involved in." She held out her hands. "My whole life prepared me to access the Deaf world, and I'm preparing her to be comfortable in all the non-Deaf worlds. We have wide citizenships in this family."

In 1790, Alessandro Volta discovered that electrical stimulation to the auditory system could mimic sound. He put metal rods in his ears and connected them to a circuit, giving himself a nasty shock and hearing what sounded like "boiling paste." In 1957, Andre Djourno and Charles Eyries used an electric wire to stimulate the auditory nerve of a patient undergoing brain surgery, who heard a sound like crickets; during the 1960s, researchers began placing multiple electrodes in the cochlea. These devices, instead of amplifying sound as a hearing aid would, actually stimulated directly the brain areas where sound would be received by hearing people. This technology was gradually refined, and in 1984, the FDA approved a device for use by late-deafened adults. Because it transmitted on a single channel, it gave information on the loudness and timing of sounds, but did not convey the content of those sounds. By 1990, a multichannel device, which stimulated different areas of the cochlea, was on the market; today, some devices operate on twenty-four channels. A microphone picks up sounds from the environment and conveys them to a speech processor, which selects and arranges those sounds. A transmitter and receiver/stimulator receive this information as signals and convert them into electric impulses. Passing through a device placed within the skull, an array of electrodes sends those impulses to different regions of the auditory nerve, bypassing damaged portions of the inner ear. of a patient undergoing brain surgery, who heard a sound like crickets; during the 1960s, researchers began placing multiple electrodes in the cochlea. These devices, instead of amplifying sound as a hearing aid would, actually stimulated directly the brain areas where sound would be received by hearing people. This technology was gradually refined, and in 1984, the FDA approved a device for use by late-deafened adults. Because it transmitted on a single channel, it gave information on the loudness and timing of sounds, but did not convey the content of those sounds. By 1990, a multichannel device, which stimulated different areas of the cochlea, was on the market; today, some devices operate on twenty-four channels. A microphone picks up sounds from the environment and conveys them to a speech processor, which selects and arranges those sounds. A transmitter and receiver/stimulator receive this information as signals and convert them into electric impulses. Passing through a device placed within the skull, an array of electrodes sends those impulses to different regions of the auditory nerve, bypassing damaged portions of the inner ear.