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.
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?”
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.”
• • •
Shortly after Bridget shared her history with me, the 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 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.
• • •
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 meaningf
ul 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, my 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 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.
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.
The project required enormous amounts of money, and Michael set himself the task of securing it. He had just finished producing 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.”
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.”
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.”
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