“You would have liked my dad,” Jackie said. “Everybody loved him. But he cheated on my mom all the time. He was a gambler who would do anything to get money, but we never had any.” Yet Walter had both warmth and imagination, which Rose did not. “My mother wrote beautifully,” Jackie said. “My dad was nearly illiterate. But he would sit at dinner with a dictionary, pick a word, and throw it at me. ‘What does that mean?’ It was my dad, who had no skills, who pushed me. My mother just wanted me to get married, have kids, meet someone who would take care of me.” Walter was the one who emphasized putting your best foot forward. “He always said to me, ‘You’re never going out of the house looking like a poor girl. If you feel crappy, you don’t let anybody know that. You walk with your head up.’”
Jackie was never allowed to sign in public; her mother found it embarrassing. Yet neither of Jackie’s parents ever had a hearing friend. “It’s as if the deaf community were my extended family,” Jackie said. “My mother always worried about how other deaf people perceived them. She would get upset about my dad’s behavior because her deaf friends would look down on them. If I did something wrong, she worried about my image in front of other deaf people.” Many deaf people have some residual hearing; they can hear loud noises, or they can hear certain registers of sound, perhaps the high or low part of a sound. Jackie had good residual hearing, and she was a genius at sound discrimination and lipreading. This meant that, with hearing aids, she could function in the larger world. With amplification devices, she could even use the phone. By the time she was seventeen, she had attended four different schools while she tried to figure out who she was. “Am I deaf? Am I hearing? Am I what? I have no idea. All I know is that I was lonely,” she said. At Lexington, she found herself picked on for not being deaf enough. At other schools, she was picked on for being deaf. Her younger sister, Ellen, who was completely deaf, was a boarding student at Lexington; her path looked easier and more straightforward to Jackie. Jackie was always pulled between the two worlds, and thanks to her oral skills she became the family interpreter. “When it came time to meet with the doctor, it was ‘Jackie! Come here!’” she recalled. “When it came time to meet with the lawyer, it was ‘Jackie! Come here!’ I saw too much. I grew up much, much too fast.”
One evening when Jackie was thirteen, her aunt called and said, “Jackie, tell your dad to meet us at the hospital. His mother’s dying.” Weeping, Walter rushed off to the hospital. When he returned at five o’clock in the morning, he began flicking the lights on and off to wake up his wife and daughter. Walter was doing some kind of jig and signing, “Mom deaf! Mom deaf!” Walter’s mother had been given powerful antibiotics to combat a life-threatening infection, and the medicine had destroyed her auditory nerves. In the weeks that followed, Walter was there every day to help her. “He wanted to earn her love,” Jackie recalled. “He wanted for the first time to have a mother. Never happened. She never wanted his advice or insight or even his tenderness.” Yet seven years later, when Jackie laughed at her funeral, Walter slapped her across the face. “Only time in my life he did that,” Jackie said. “It finally occurred to me that he loved his mother, no matter what.”
When Jackie was fifteen, Walter was hired as a printer at the Washington Post, commuting home to New York to spend the weekends with his family. He was in a terrible car accident just a few weeks short of getting his union card; he was in a coma for a week, hospitalized for months, and unable to work for a year. Because he had not yet joined the union, he had no health insurance. The family, already financially strained, was now forced into bankruptcy. Jackie falsified her age and found work as a cashier at a supermarket, where she began stealing food. When she was fired, she had to admit it and Rose was horrified. The next day, Rose swallowed her pride and asked Walter’s family for money. “They made a mockery of her, and they didn’t give her a dime,” Jackie said. “Being alone in the world with all those relatives, it’s much worse than just being alone. It eats away at you.”
Living at school, Ellen was protected from the breakdown of the marriage, but Jackie lived through every dark moment. “Because I was their interpreter, I became their referee,” she said. “I had so much power, too much power. When I talk about it, it sounds so sad. But I’m not sad about it. They were wonderful parents. Whatever money they had, they spent on my sister and me. They went the extra mile, and then they fought about it in front of my eyes, and I love them. My father was a dreamer. If I said I wanted to be a singer, he never said, ‘Deaf girls can’t.’ He just told me to sing.”
Jackie was accepted to college at UCLA in the early 1970s, at the beginning of Deaf pride. Rose couldn’t believe there were interpreters at the university. “Why would hearing people sign?” she said to Jackie. Jackie used the physical distance to start fresh. “In college, I regressed,” she said. “It took me a long time to grow up again.”
Walter died in 1986, when Jackie was thirty; Rose mourned his death, but she was happier without him, and her relationship with Jackie improved; when her own health deteriorated, Jackie invited her to move in with her in lower Manhattan. “She still recollected humiliations from when she was a little girl, years and years of bitterness,” Jackie said. “I never want to be like that.” As her father had urged, Jackie has lived in a far larger world than her parents were able to—working as an actress, a real estate agent, an entrepreneur, a beauty queen, an activist, a filmmaker—and she has none of her mother’s bitterness. Her sparkling grace and admirable toughness have emerged from a collaboration between her intelligence and will. The cost, however, has been considerable. Walter’s mother rejected him for being deaf; Rose’s deafness prevented her from making use of her mind; Ellen went away to school and became marginal within her own family; and Jackie’s gift for sound discrimination forced her into a premature maturity. Being deaf was a curse in the family, but so was hearing.
I first met Jackie Roth in her late thirties, in 1993. In her fifties, she became involved in the communications industry, working on Internet relays to allow deaf and hearing people to communicate via interpreters. She joined the board of a foundation that taught parents Sign and taught them how to support children with cochlear implants that provide synthetic hearing. Her work focused on bridging the cultures—just what she’d done in her own family. When she turned fifty-five, she threw herself a birthday party. It was a bounteous event, generous to all the people she loved, and it brought out the best in everyone. “It was almost like I had lived in two very separate worlds all my life, Deaf and hearing,” she said. “A lot of my hearing friends had never seen the Deaf side. The Deaf people had never seen my hearing side. It was very wonderful for me to see everybody in one place. I couldn’t do without either, and I finally realized that that’s who I was. Thinking about the anxiety these issues have generated, I’m my mother’s daughter. But isn’t it great that I figured that out at a party? I’m my father’s daughter, too.”
• • •
Like Jackie, Lewis Merkin, an actor and playwright, struggled with the legacy of shame that surrounded deafness during his childhood. “When I was growing up, I looked at these grassroots deaf people, who were marginal, unimportant, completely dependent on others, who had no education, saw themselves as second-rate,” he said. “I recoiled within. I felt sick at the thought that I was deaf. It took a long time for me to understand what it meant to be Deaf, what a world was open to me.” Lewis was also gay. “I saw limp-wristed drag queens and guys in leather, and again I thought, that’s not me; it was only with time that I came into a real gay identity.” MJ Bienvenu, professor of ASL and Deaf Studies at Gallaudet, told me, “What we have experienced is so similar: if you are Deaf, you know almost exactly what it is like to be gay, and vice versa.”
• • •
More than a hundred genes for deafness have been identified, and another one seems to be picked up every month. Some kinds of deafness are caused by the interaction of multiple genes rather than by a single one, and much dea
fness that occurs later in life is also genetic. At least 10 percent of our genes can affect hearing or ear structure, and other genes and environmental factors can determine how profound the deafness will be. About a fifth of genetic deafness is connected to dominant genes; the rest emerges when two carriers of recessive genes produce children together. The first genetic breakthrough came in 1997, with the discovery of connexin 26 mutations on GJB2, which are responsible for a large proportion of nonacquired deafness. One in thirty-one Americans carries GJB2, with most carriers unaware of their status. A small amount of deafness is X-linked, which means it comes only from the father, and another small percentage is mitochondrial, which means it comes exclusively from the mother. One third of deafness is syndromal, meaning that it is a component of a condition with other physical consequences. Of the nonsyndromal forms of deafness, some are regulatory and based on a disruption of DNA message processing; some are directly involved in the development of the cochlea; and the most frequent interfere with the gap junctions in which potassium ions relay sound as an electrical impulse to the hair cells of the inner ear.
Geneticists long dismissed Alexander Graham Bell’s anxiety about the creation of a deaf race, but it appears that the residential school system, which allowed deaf people to meet and marry one another, may have doubled the rate of the deafness-related DFNB1 gene in America over the past two hundred years. Indeed, the worldwide prevalence of deafness genes seems tied to historical situations in which deaf people reproduced together. Blind people have not necessarily married other blind people, but language issues have inclined deaf people to marry one another. The earliest example of this is the deaf community that thrived under the Hittite empire thirty-five hundred years ago, which is now believed to have concentrated and spread the 35delG mutation. When GJB2 was discovered, Nancy Bloch, executive director of the NAD, commented via e-mail for a New York Times article, “We applaud the great strides made through genetic identification research, however, we do not condone the use of such information for eugenics and related purposes.” Prenatal screening can pick up certain kinds of genetic deafness, allowing some prospective parents to opt against having deaf children. Dirksen Bauman, a professor of Deaf Studies at Gallaudet, has written, “The question of what lives are worth living is now answered in doctors’ offices instead of in the Nazis’ T-4 program. The forces of normalization seem to be gaining ground.”
At the same time, genetic information has provided comfort to some hearing parents of deaf children. The geneticist Christina Palmer described a woman who had come in racked with guilt, certain that her child was deaf because of the rock concerts she had attended while pregnant. The geneticist found connexin 26, and the woman sobbed with relief. I came across a personal ad that began, “SWM seeks mate with C26.” It was his identity, and a map for a genetic future; all the children of a couple who both have C26 will be deaf.
Most hearing people assume that to be deaf is to lack hearing. Many Deaf people experience deafness not as an absence, but as a presence. Deafness is a culture and a life, a language and an aesthetic, a physicality and an intimacy different from all others. This culture inhabits a narrower mind-body split than the one that constrains the rest of us, because language is enmeshed with the major muscle groups, not just the limited architecture of the tongue and larynx. According to the Whorf-Sapir hypothesis, one of the cornerstones of sociolinguistics, your language determines the way you understand the world. “To establish the validity of Sign,” William Stokoe said to me shortly before his death in 2000, “we had to spend a long time dwelling on how it resembles spoken language. Now that the validity of Sign has been broadly accepted, we can concentrate on what’s interesting—the differences between Sign and spoken language, how the life perceptions of a native signer will vary from the perceptions of the hearing people around him.”
The Deaf activist MJ Bienvenu said, “We do not want or need to become hearing in order to consider ourselves normal. For us, early intervention does not mean earphones, amplifiers, and training a child to appear as hearing as possible. Instead, a good early intervention program would offer deaf children and hearing parents early exposure to ASL and many opportunities to interact with signing Deaf people. We are a minority group with our own language, culture, and heritage.” Barbara Kannapell, another Deaf activist, wrote, “I believe ‘my language is me.’ To reject ASL is to reject the deaf person.” And Carol Padden and Tom Humphries wrote, “Deaf people’s bodies have been labeled, segregated and controlled for most of their history, and this legacy is still very much present in the specter of future ‘advances’ in cochlear implants and genetic engineering.” These implants, devices surgically placed in the ear and brain to provide a facsimile of hearing, are a hot-button issue among Deaf people.
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, 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.
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, ‘Woul
d 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!’” 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.”
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