Far From the Tree

by Solomon, Andrew

  Bob was interested in Sign, but he didn’t study it, and Rory asked him to continue to speak to him; he even asked him to keep his mustache. “You talk to me more than anybody, Dad, with the coaching. If I can lip-read you, that keeps me sharp.” But later, Bob realized that this was all part of the frequent deaf habit of seeming to get more than you do. “I didn’t realize until later how much he was missing all the time,” Bob said. “I knew how smart he was and he was not making it in algebra. I said, ‘Let me sit in the class.’ The teacher was writing formulas on the board and speaking with his back to the room.”

  In junior high, Rory began working seriously on ASL, and in high school he learned about Deaf identity. He got a baseball scholarship to the University of Arizona and went to meet the coach. “I called him on the phone over and over again, telling him about Rory’s situation,” Bob said. “‘Rory’s a great lip-reader. You just need to look him straight in the eye.’ So the coach comes in and he’s looking down, and Rory says, ‘Coach, if you look up, I can really read lips well. Speak a little slower and I’m going to get it.’ The coach pulls out a pad, drops it on his desk, and starts writing out notes—with an attitude. Rory wadded up the paper, said, ‘I can’t play for you,’ drove out that night, and went to Gallaudet.”

  Rory never really came back to the hearing world. At Gallaudet, he majored in Deaf studies and philosophy, was the resident assistant in his dorm, and played on the baseball team. When Rory graduated, the Dodgers offered him a tryout. He got in touch with Curtis Pride, who played pro baseball and is hard of hearing, and who said that no one in the pro sports world was going to help “the deaf guy.” Rory turned down the Dodgers’ offer and got a master’s in education instead. “It all goes back to that experience in Arizona,” Bob said. “Every now and then, we’ll go to a ball game and watch a guy playing. He’ll go, ‘Hey, Dad, I was as good as that guy, huh?’ And I’ll go, ‘Yeah, you sure were.’”

  Rory later married a woman who was fifth-generation deaf. He turned off his implant and has never used it again; he said that with it he felt like “a duck in a world of chickens.” The Deaf world became his home. Rory now teaches deaf children in the fifth and sixth grades. He gave up baseball, but he coaches a Deaf team that has made it to championship level, and he’s become a fanatic bicyclist. He has rewritten the course curriculum for California deaf education. “He’s told me that he remembers a little bit about sound,” Bob said. “But it’s not a real vivid memory.” Rory has militated against parents implanting their young children. “As for pediatric cochlear implant, it should not be tolerated since it ignores the child’s right to choice,” he wrote.

  Bob said of his own decision, “I did what I thought was right. It was not some big philosophical discussion between Deaf and hearing, because I had no clue about that.” Rory understands why his parents made their decision, and Bob understands why his son reversed it. “I realize that when he was in an oral environment, he was getting about ninety percent,” Bob said. “That sounds like a lot, but if you really care about people—and he’s a very empathetic guy—then you want to get everything. I totally accept and respect who he is and what he wants. I used to tell people I’ve got one son who is deaf, and I’ve got three who won’t listen to me. Selfishly, I’d love for him to be able to sing and play the guitar with me, and he’d like for me to be fluent in signing.”

  I wondered whether the child must always win in these debates, whether there is some writ in which a parent’s job is rising to the occasion, while a child’s job is simply being. Bob Osbrink seemed both prouder and more melancholic than many other people I had interviewed. Rory was deafened at three, and three years is a long time in a parent’s life and in a child’s. I wondered whether Bob’s wistfulness perhaps stemmed from having lost a deep connection with his son not once but twice: first music, and then sports. “The things that hurt me are things I missed, like my not knowing when he acted like he got it when he wasn’t getting it,” Bob said. “Laughing when everybody laughed but not knowing what the joke was. I’m sad that he had to go through everything he’s had to go through. A part of me will always be sad. But I don’t think he’s sad, and I’m certainly not sad about who he is.”

  • • •

  The bioethicist Teresa Blankmeyer Burke said, “It is rare that one grieves for something that one has not lost. Consider gender as an analogy. A woman might wonder what it would be like to be a man, or vice versa; yet, this curiosity is not likely to be expressed in terms of loss.” Paula Garfield, artistic director of the London-based Deafinitely Theatre company, and her partner, Tomato Lichy, were thrilled when they found out their daughter was deaf because it gave her “a passport to inclusion in a rich and varied culture.” The general culture feels that deaf children are primarily children who lack something: they lack hearing. The Deaf culture feels that they have something: they have membership in a beautiful culture. Hearing parents are thrown back on their own dichotomy: do they have a deaf child, or do they lack a hearing one?

  • • •

  Like Bob Osbrink, Felix Feldman thought that the ability to function in the oral world was valuable—that acculturation was the natural and only goal. When he had a daughter who was deaf, there was no such thing as an implant; when he had grandchildren who were deaf, the implant was advanced and the kids were not interested. Felix has an old-style Jewishness that habitually seeks the cloud accompanying any silver lining. In his view, and despite his love for his progeny, little recommends the experience of having two deaf children, and the arrival of three deaf grandchildren has been no further blessing.

  Felix and Rachel Feldman’s younger daughter, Esther, was born with cerebral palsy; with a hearing aid, her sound discrimination was sufficient for language development. Just as the family was struggling with her diagnosis, the pediatrician told them that their older daughter, Miriam, was deaf. It was 1961, and Felix and Rachel opted for an oral education for Miriam, same as Esther. The orthodoxy was still that children learning orally should have no exposure to Sign, so it was forbidden in their house. “We would break Miriam’s arms if she signed,” Felix said. Felix and Rachel went to class themselves to learn how to reinforce the oral lessons at home. Having heard of a good speech therapist in Santa Monica, they moved there. Their lives were focused around deafness. “We had contact with deaf people, but all speaking people,” Felix said.

  Though Esther now functions relatively well for a person with CP, the path was long and difficult. Miriam, though much more deaf, was a model child. She had speech therapy every day at school, and private tutoring three days a week. Her passion was competitive figure skating. The coach was allowed to give her three signs: one to say when the music started; one at the halfway point to tell her to speed up or slow down; and one at the end to tell her the music was finished. “Competing to music without hearing one note,” her father said. “At school, she was always at the top of the class. With all the hearing children. Completely from lipreading the teacher. She never saw herself as handicapped.” When Miriam was fifteen, she competed in the 1975 World Winter Games for the Deaf in Lake Placid, New York, and was immersed for the first time in a context where the primary language was Sign. “She picked it up very fast,” Felix recalled. “There was nothing we could do.”

  Miriam said to me, “It was hard, learning Sign. It took many years because I came to it so late, and with so many anxieties, my mom and dad always saying, ‘Don’t sign, don’t sign.’ At the Deaf Olympics, everyone else was signing, and I didn’t know how. It was humiliating.” Felix felt betrayed by Miriam’s signing, though he admits that her verbal skills have remained strong. Miriam started and runs the Jewish Deaf Community Center in her California town; she issues publications, organizes social events around Jewish holidays, and is a leader within her community. She conducts about 80 percent of her communication in Sign and about 20 percent in speech. “But all my language would be better if I’d been allowed to sign as a child,” she said.

>   When cochlear implants became viable, Felix tried to get Miriam, then in her twenties, to have one, but she was enamored of the Deaf culture and the idea was repugnant to her. “We discussed, we fought, we screamed,” Felix said. “I lost. We know younger and older people who have had it. They hear you, they use the telephone. They listen to the news, they watch TV. Why wouldn’t you have it? Unfortunately, she and her ex-husband feel that it’s genocide.”

  All three of Miriam’s children—ages seventeen, fifteen, and thirteen when we met—are deaf. Felix pushed for them to receive oral coaching, but it is hard for parents who cannot hear to support oral instruction in the intensive way it requires. “Miriam took the line of least resistance,” Felix said. “If they didn’t sign, they would speak. It’s heartbreaking.” Though Felix can communicate easily with Miriam, he is unable to have a conversation with his grandchildren. Miriam’s eldest is now enrolled at the world’s only Orthodox Deaf yeshiva and is learning Hebrew and Yiddish. Miriam said, “I had to follow people’s lips all day long. I didn’t want my kids to go through that. My kids are happy, they know how to spell, and they were signing at eight months old. They were able to tell me how they felt, and what they wanted.” I wondered whether they had hearing friends at school. “When my daughter started school, there were no other deaf children in her year. What did she do? She taught the hearing kids to sign, and some of them are still her best friends.”

  Felix was desperate for the grandkids to have implants. Miriam said, “Any time we get together with the family, that’s all we talk about.” Felix had offered his grandchildren a million dollars each to have the procedure; he said to me, “I should do it the other way. If they don’t have the implants, I will take a million dollars each and give it away.” He made a show of lowering his voice and whispered extremely loudly, “The truth is, she doesn’t want me to be happy.” Miriam turned to me. “I didn’t hope for deaf children,” she said. “I didn’t expect them. Now that I have deaf kids, I am very happy because they are a part of the world that I’m in and they understand where I’m coming from. If I had hearing kids, however, my family would like me more.” Then they both started to laugh. Felix said, “Well, that’s our story. I think your book should be called Father Knows Best.”

  • • •

  It will be some time before implanted people can savor the nuance of a Verdi opera or discern the voice of a single turtledove in a forest full of crows, but implant developers are closing in on enabling the perception of sufficient auditory information for the consistent development of verbal fluency. The objections left standing are conceptual. As Felix Feldman bitterly noted, many Deaf activists contend that cochlear implants are part of a genocidal attempt to destroy and eliminate the Deaf community. Some have compared pediatric implantation to intrusive surgeries such as those used to “correct” intersex conditions, which many intersex adults have protested. The British Deaf activist Paddy Ladd refers to implants as “the Final Solution,” and Patrick Boudreault speaks of a cultural and linguistic extermination campaign. Northeastern’s Harlan Lane wrote, “Could you imagine if somebody stood up and said, ‘In a few years, we’re going to be able to eliminate black culture’?” He sees the implant as representing just such an assault. “If hearing people saw the Deaf community as an ethnic group with its own language, as opposed to someone who is handicapped, then you wouldn’t have such a deep misunderstanding.” Is the underlying hearing person being liberated by the implant, or is the authentic Deaf person being obliterated? Hearing specialists and medical clinics have, unfortunately, tended to give little support to campaigns to ensure that parents meet deaf people before implanting their deaf children. Many physicians do not provide parents with Deaf community contacts, and few parents seek out the contacts that are provided to them. Only Sweden has a law that requires such parents to meet with representatives of the Deaf community and learn about their lives before making this major medical decision for their child.

  The question, really, is how we define the relationship between parents and children. A hundred years ago, children were effectively property, and you could do almost anything to them short of killing them. Now, children are empowered. But parents still decide what their children should wear, what they should eat, when they should sleep, and so on. Are decisions about bodily integrity also properly the province of parents? Some opponents of implants have proposed that people make their own choice when they turn eighteen. Even putting aside the neural issues that make this impractical, it is a flawed proposition. At eighteen, you are choosing not simply between being deaf and being hearing, but between the culture you have known and the life you have not. By then, your experience of the world has been defined by being deaf, and to give it up is to reject whom you have become.

  Children with implants have experienced social difficulties; if the objective of the implants is to make the children feel good about themselves, the results are mixed. Some become what William Evans of the University of California has called “culturally homeless,” neither hearing nor Deaf. The population at large does not like threats to binaries; binaries drive homophobia and racism and xenophobia, the constant impulse to define an us and a them. The wall between hearing and deaf is being broken down by a broad range of technology: hearing aids and implants that create what some activists call the “cyborg mix,” bodies that are physically enhanced in some way.

  Though some implanted adolescents disconnect them in their teen years, most perceive them as extremely useful. In one study from 2002, two-thirds of parents reported that their children had never refused to use the implant; there is presumably more adolescent resistance to, for example, seat belts.

  • • •

  Barbara Matusky told her husband, Ralph Comenga, that she would have children if he insisted, and he insisted. She was still working—driving a forklift in a warehouse for Procter & Gamble in West Virginia—when she was nine months pregnant with her son, Nicholas. It was 1987, and she’d never even heard the word audiology. When Nicholas was six months old, she decided to see a specialist; she thought maybe the baby was having ear infections. She had to wait three months for an appointment. The specialist sent the family to Johns Hopkins for further assessment, and another three-month wait. When she finally got the diagnosis, Barbara was offended by everyone’s expectation that she would be in despair. But she said to me, “When you asked to do this interview, I said, ‘If you’re looking for somebody who was devastated by this, don’t come here, because I don’t have that story.’ But I can tell you now that I didn’t sleep and I cried a lot at night. I would lay in bed and say, ‘If he is deaf and he wants to play football, what?’ I did this with everything in his future life, everything.”

  Barbara and Ralph first chose an oral education for Nick. “I ended up with a teacher who would talk to me about the fabulous therapy she’d done and how successful her kids are,” Barbara said. “Every day I would think, ‘Today she is going to unleash the wonder.’ It never happened.” Nick loved garbage trucks, so Barbara would take him out and follow a garbage truck for hours, trying to teach him words to go with what they were watching, hoping that if the words referred to things that interested him, the words themselves would interest him. “Being oral was horrible, everything was about them saying words. It was so intense, so totally unnatural. I was a maniac.” Ralph wanted to look at a cochlear implant—at that time, still a new technology—and Barbara refused. “That was not a decision I could make, to cut my kid’s head open. You’re trying to make a decision for this future adult, but what you’ve got is a baby. It’s about who they are as people, and you don’t know that when they’re infants.”

  Barbara saw that Nick was too isolated, so she decided to have another child—a hearing sibling who could help translate for him. The day she gave birth, Barbara told the hospital about the protocols for testing hearing in newborns. Brittany, they declared, was hearing. “She is in her crib crying in her room, and I am playing with Nick, and I can remembe
r hollering, ‘Brittany, you’re okay, you can hear me. Nick needs me.’ I didn’t know that what I really wanted was another deaf kid. Once I realized she wasn’t hearing, which was within the first two months, I called the audiologist and said, ‘Order me hearing aids.’ I called the school and said, ‘She’s deaf, she needs to be in a class.’ So at three months, she’s aided, she’s seeing Sign, a whole different situation.” When two teachers were assigned to come to the house and work on Barbara’s signing and Brittany’s language exposure, however, Barbara found their presence oppressive. “I kept saying, ‘My kids are right where they need to be,’” she recalled. “So they would say to me, ‘Think how much smarter they would be if you had started earlier.’ They were right, and I didn’t want to hear it.”

  Brittany produced a broad range of phonemes and was identified as a good candidate for oral education, which Nick was already receiving. Nick, on the other hand, couldn’t make a comprehensible speech sound. “I could just see that it wasn’t going to work for him. So then it was like ‘Do I sacrifice him for her? Or her for him? Because we can’t be oral and sign.’ So I decided, we’re going to start signing.”

  They lived two hours away from the residential Maryland School for the Deaf, and she enrolled both children there. The school was then doing a version of Bi-Bi, but the school day took place in Sign. Barbara enrolled in an ASL interpreter-training program near the school. Ralph had to settle for an ASL class at a local high school. But she couldn’t bear to have them board—“From not wanting kids, I fell in love with my kids”—so she drove them both ways every day. The deaf educators resisted the arrangement, but Barbara was adamant. “That part of it I hated. Deaf of deaf are golden, and deaf of hearing are subservient and not so great. My kids really feel the negative weight of all that. I question the Deaf community every step of the way. I might have said, ‘Here, take my kids. Let them live in the dorm. Have at it, you are the experts.’ Would my kids have been any further along developmentally? I can tell you, those kids who effectively lose their parents are much further behind.” Once she’d done her interpreter’s training, Barbara took a volunteer position at the school; eventually, she got a job there as a secretary. Barbara struggled to give her children a feeling of confidence. “The whole time they were growing up, I said, ‘You can do anything you want to do. This doesn’t limit you.’ Then it started to hit me. It’s got nothing to do with them. It’s got to do with that hearing person across from them at an interview.”