Nonetheless, a review of the broad literature on this topic concluded that the implant provides only coarse and degraded versions of sound, and therefore children with the implant receive fewer fine distinctions of spoken language than their hearing peers. This means that some implanted children, not exposed to Sign because they are expected to develop speech, may fall into that frightening category of the needlessly impaired who have meager primary language. Cochlear Ltd. has shown that implanted children learn “more and better” oral language, but “more and better” is a little vague if this is to be your sole mode of communication. Parents too often want to believe that the implants make their children hearing and do not secure any special deaf education for them. “You should bring up these children bilingually until it becomes clear that the child can develop satisfactory oral language,” Robert Ruben, former chairman of the Unified Department of Otolaryngology at Montefiore Medical Center, advised. “Language of any kind, no matter what kind, must somehow be got into the head of the child soon enough.”
The implant destroys all residual hearing. Although accurate hearing tests can be performed on very young children, it is not possible to determine how well those children might be able to use their residual hearing. Anyone with a hearing loss over 90 decibels is classified as profoundly deaf, yet I have met profoundly deaf people who were able to make such good use of their residual hearing that I could talk to them almost as I would to a hearing person. Hearing loss is measured as an average of loss in various registers; most sounds operate at many frequencies, so someone with a 100 decibel hearing loss could still be able to perceive high-frequency sounds. Even Tom Waits and James Earl Jones produce some high-frequency sound waves when they speak. Further, detection of sound and discrimination of sound are two separate abilities. Some people are able to use intuitive abilities, high-frequency functions, and other natural gifts to discriminate sound well beyond their ability to detect it.
The NAD’s original response to the implants condemned “invasive surgery on defenseless children, when the long-term physical, emotional, and social effects on children from this irreversible procedure—which will alter the lives of these children—have not been scientifically established.” As the devices evolved and came into wider use, the NAD moderated its position somewhat, saying, “The surgery decision represents the beginning of a process that involves a long-term, and likely life-long commitment to auditory training, rehabilitation, acquisition of spoken and visual language skills, follow-up, and possibly additional surgeries,” and, “Cochlear implantation is not a cure for deafness.”
If you are not in a village in northern Bali where everyone knows Sign, and you opt against the implants for your child, you will find yourself trying to learn a new language at the same time your child is learning it, and children can learn language better than adults can. To choose Sign for your deaf child is, in some significant ways, to surrender him or her to Deaf culture. It is not so easy to give up your own children, and it does not always work out so well for parent or child. Christina Palmer said, “It’s the Deaf ethnicity hypothesis. If you come from a hearing family, you don’t get the cultural aspect unless you somehow connect with other Deaf people and learn about a Deaf community.” Whereas oral communication places strain upon the deaf member of the family, the decision to sign shifts the power base, placing the greater strain of understanding upon the hearing members. In effect, parents can learn Sign and always speak awkwardly to their child, or they can push their child toward oralism and know that he will always speak awkwardly to them. It is a familiar adage of parenthood that the parent should sacrifice for the child rather than the other way around, but to anoint Sign as the righteous choice is to prioritize a specific vision of how the margins understand the mainstream and vice versa.
• • •
Nancy and Dan Hessey have fallen passionately on both sides of this debate since their daughter Emma became deaf, and their quest has been as much spiritual as medical. They had both converted to Buddhism in adulthood and met at a Buddhist center in Boulder, Colorado. Nancy had a hysterectomy a few years later and became terribly depressed. When a colleague announced that she and her husband had decided to adopt a baby from Asia, Nancy became determined to do the same thing. Dan was determined that they should not, he laughingly recalled, “because it might get out of control, come to dominate your life”—but Nancy ultimately prevailed.
On June 29, 1998, Dan and Nancy arrived in Hanoi and headed almost immediately for the orphanage. “It couldn’t have been more alienating,” Dan said. “Third-world brutalist architecture, big picture of Ho Chi Minh.” The deputy head of the orphanage explained that the baby they were to receive had had pneumonia, had lost a quarter of her weight, and had to stay at the orphanage until she finished her course of antibiotics. Nancy asked to meet her. “They put her in my arms, and she looked right in my eyes and smiled,” Nancy said. But the smiling baby looked incredibly drawn, and the daughter of the head of the orphanage suddenly said, “I think you should take her to the International Hospital right now.”
At the International Hospital, somebody took a chest X-ray, said that the baby’s pneumonia was clearing up, and provided a prescription for cephalosporin. When the baby’s face flushed, Nancy realized she was having an allergic reaction; soon she was throwing up blood and had bloody diarrhea. For the next ten days, Dan and Nancy lived in the hospital; eventually, they moved back to the hotel. US adoptions of Vietnamese babies had to be processed through Bangkok, so Dan went to Thailand. Nancy took the baby to the hospital daily for nebulizing. Sitting in the waiting room, Nancy saw a card from an Israeli doctor, which said that his clinic serviced the US embassy. Nancy brought him all the medical records, and he did blood work and explained that the baby had both cytomegalovirus and HIV; he assured Nancy that people would take care of the baby until she died, and that they would get another kid they’d be happy with.
Dan was furious. “What were we going to do, throw her back like a fish that wasn’t worth the trouble to clean and eat?” he said to me. But American law prohibited the immigration of HIV-positive children. Fortuitously, the Hesseys had once taken in a member of the local Buddhist community who was dying of AIDS, so Dan knew people at the Boulder County AIDS Project who could help them. Meanwhile, Nancy waited and waited for the Vietnamese government to approve the adoption. After two fraught months, both sides came through, and the family all flew home together.
The baby, whom they had named Emma, was admitted on arrival in the United States for a clinical evaluation at Children’s Hospital Colorado in Denver. Four days later, a doctor called with news: Emma was not HIV-positive. “The ripples of joy spread everywhere,” Nancy said. Two weeks later, Emma couldn’t hear anything except a loud bang. She had most likely been exposed to cytomegalovirus in utero, which had caused her hearing to degenerate until it was almost entirely gone.
A deaf member of the Hesseys’ community told them how much better life was for deaf children of deaf parents. Nancy and Dan decided to be like those deaf parents. Dan had read the Deaf invectives against cochlear implants, and he and Nancy decided “to respect Emma for who she was rather than to fix her.” But there were no deaf schools in Boulder. Their audiologist told them that they should move to Boston, San Francisco, or Austin, where deaf education was strong. So when Emma was fourteen months old, they relocated to Austin and enrolled Emma in early-learning programs at the Texas School for the Deaf. Emma had started walking, but she stopped; her motor focus was entirely on signing. Dan and Nancy began lessons in ASL, but neither showed much of a gift for it. Dan said, “You’d hear these stories like ‘This deaf person’s parents never learned to sign, how could they have ever done that?’ I couldn’t learn to sign to save my goddamn life.” Nancy said, “But then we visited the public school oral program, and we met kids who were not allowed to sign, and it was horrific. It was very clear to both of us that it was definitely child abuse to try to make a deaf kid oral.”
/>
In Texas, Emma developed severe asthma, and the family found themselves in the emergency room weekly. Dan and Nancy had trouble finding work, and the marriage fell apart. Dan said, “Nancy’s attention was completely on Emma’s survival, which was a genuine issue at that point. But I no longer felt like she could collaborate with me. I had been demoted to being a helper in the background.” When Dan announced that he had to return to Colorado, Nancy refused to go with him—but neither did she want to live and die in Texas. She had checked out the Learning Center for the Deaf in Framingham, Massachusetts, and hit it off with the head of the school, who offered her a job. Dan, who didn’t want to be half the country away from his daughter, moved to nearby Vermont.
Nancy started working full-time at the school and wanted Dan to take Emma on a schedule; Dan was resentful and also scared of looking after Emma alone. “Compassion is the ability to care unconditionally for another person, not based on fulfilling your expectations,” Dan said. “I was good on the theory, and then the bar got raised way high and it was very humbling.” Meanwhile, neither of them was good at Sign. “I was failing miserably at ASL, and it was my job, too,” Nancy said. She began talking to Dan about cochlear implants. They had both been hailed as heroes by their Deaf friends for moving around the country to ensure their child an optimal Sign education, and now they were getting ready, as they saw it, to betray Deaf values.
When Emma was four, she had one ear implanted in a seven-hour procedure. Nancy took her to postsurgical follow-up and was told that the wound was severely infected and that her daughter might die; Emma was put on IV antibiotics. Her asthma had been linked to allergies to dairy, soy, wheat, and several other foods, and she had been managing well on a restricted diet and inhaled steroids. After the surgery, she became asthmatic again and nothing seemed to help. Nancy quit her job. Though they were divorcing, Dan and Nancy both decided to move back to Boulder. “It’s kind of a circle,” Nancy said. “She came to Boulder with hearing; she left when she was deaf; she came back when she was starting to hear again.”
Meanwhile, Emma was caught between two cultures and two languages—exactly where her parents had hoped she would never be. She went to cochlear implant camp four days a week that summer for audiological training. At Dan’s insistence and despite Nancy’s bad memories of the first implant surgery, Emma was implanted in her other ear. This time, it all went smoothly. By the time I met Emma, she was nine. Her grammar and usage were not quite at age level, but she was speaking fluidly and unself-consciously. Nancy said, “She’s done better than any of the professionals we’ve worked with have ever seen. They think it’s because she was fluent in a language, ASL, before this.” With the second implant, Emma shot up from a 25 percent success rate on open-sound recognition to 75 percent.
Dan and Nancy had sworn to keep Emma in a bicultural environment, but that became increasingly difficult. They noticed that when she could sign or speak, she always spoke. Gradually, when Emma was seven or so, they allowed her signing to stop, and they settled into a largely amicable coparenting arrangement. Emma said to me, “We had a hard trip to go home, but we made it because we’re all strong and gentle.”
Dan said, “When you have a disabled child, you say either, ‘I’ve got this new asset in my life who is going to make me happy and proud,’ or, ‘I’m enslaved by my child who is going to be full of needs until I get so old and exhausted that I fall over dead.’ The truth about this situation always involves both. Buddhism is about nothing else than these dualities. But did that make it easy? No. I had to relearn my Buddhist practice from the point of view of playing for real. I lost my hobby.”
• • •
Most medical insurance will now cover the implant, the surgery, and the recommended audiological training. The cost can run well over $60,000, but the surgery is still an economically good choice for insurers. Industry-funded studies at Johns Hopkins and the University of California at San Diego have shown that implantation saves an average of $53,000 per child over the cost of other accommodations to deafness. But the calculus here is complex. Many people who have trouble adjusting to implants run up bills; deaf people who develop good Sign early are not as expensive as those who need accommodations for traumatic childhoods. For most hearing parents, the choice seems straightforward. One mother said, “If your child needs glasses, you get glasses. If your child needs a leg, you get a prosthetic. It’s the same thing.” Another said, “If, at twenty, Dorothy Jane wants to turn off her voice, that’s fine. I want her to have a choice.” Those with the implants who are reclassed as hearing do not receive the accommodations they would get as disabled people. The problem is that those who do not get implants may be seen as having “chosen” their condition in the face of a “cure,” at which point they do not “deserve” the “charity” of taxpayers. The existence of the implants may, therefore, take disability status from other deaf people.
• • •
Rory Osbrink was born hearing, an eager and athletic child. One December Friday in 1981, soon after his third birthday, Rory came down with what appeared to be the flu. His parents, Bob and Mary, packed him off to bed, gave him liquids, and kept a close eye on him. He was no better by Saturday, and on Sunday, he suddenly seemed to be much worse, so they brought him to the emergency room. Bob and Mary sat waiting while the doctors ran some tests; eventually, one came out and announced, “We think he’ll make it.” Stunned, Bob replied, “He’s got the flu, right?” They said, “He has rapidly advancing meningitis, and he’s gone into a coma.” Rory was in an oxygen tent for the next five days; he was in and out of the hospital for forty days. “He was getting repeated spinal taps, and they couldn’t give him anesthetic because it would mask the white cell count,” Bob recalled. “I was the only one that could hold him while he’s screaming through those spinal taps. I still go into shock if I hear a three-year-old cry.”
Bob Osbrink was a professional musician, and it had long been his habit to play his guitar and sing to Rory in the evenings. In the hospital, Rory stopped responding to Bob’s singing. In an effort to control the Osbrinks’ trauma, everyone at the hospital said that Rory’s hearing would come back, though the medical staff knew his deafness was permanent. “False hope is brutal,” Bob said. They brought Rory home in time for New Year’s, and when fireworks went off, they ran up to comfort him, but he slept right through them. When he was well enough to stand, he fell, because meningitis often affects the inner ear as well as the cochlea; he had no sense of balance.
Bob Osbrink has been haunted by guilt ever since. “What if I had gotten him in sooner?” he asked. “The experts told me, ‘We probably would have diagnosed the flu and said he didn’t belong in the hospital.’” Bob and Mary had very different reactions to the experience. Bob became almost manically active, trying to keep Rory engaged, while Mary became quietly protective of her son. “One time she said, ‘Does this not bother you at all?’” Bob remembered. “I got mad and I said, ‘Of course it bothers me. It’s tearing me apart inside. You sit and cry. I can’t just sit and not do something.’” Bob gave up music; he didn’t even listen to the radio for a year.
Neither Bob nor Mary knew what to do with a deaf child. “He wasn’t a real verbal little guy in the first place,” Bob said. “His older brother spoke very articulately, specifically, eloquently. He had good speech before he was three. Rory was not as advanced.” Bob’s parents had an acquaintance who knew Dr. Howard House, founder of the House Ear Institute, and Dr. House told Bob about a brand-new technology, the cochlear implant, which had not yet been approved for children. “We met deaf adults who had had an implant and saw that they could hear sounds. We reviewed studies on the one little girl who had been implanted and saw her reacting to her parents’ voices. Rory had already been through so much hospital time. Were we going to put him through more?” Bob was aware that the FDA had not approved the device for children because of concerns about how a developing brain would respond to a foreign object inserted in it.
The device was still single-channel, and none of the adults who’d received it had become fully verbal. Then Rory walked into the street and was nearly hit by a fire truck that was speeding past with sirens blaring. At four, Rory became the second child ever to receive an implant. “We thought awareness of sound would improve Rory’s safety and would help his lipreading. It was a very emotional day when Rory sat in the testing booth and reacted to a sound.” But the sound Rory got was extremely primitive and ultimately not very useful.
His inner-ear damage meant he was still unsteady on his feet. Bob wanted to recapture Rory’s athletic promise, a long-term negotiation. Rory was enrolled at mainstream schools and played on the school teams. Bob coached Rory’s Little League team and gave him extra practice mornings and afternoons. By the time he was eight, Rory was a star player, had begun to sign, and had joined a deaf team. Bob coached that team as well. Rory would read his lips and then interpret to the players. “You can have an international soccer team where everybody on the field is speaking a different language and yet they will play the game the same,” Bob said. “The game itself allows you to connect. It has its own language. It meant he was ‘that great ballplayer,’ not ‘that deaf guy.’” Bob shares music with his older son; sports was his bond with Rory.
Far From the Tree Page 14
