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.
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 or the abstract notion of name), only specific ones (such as cow or someone’s actual name); there was no way to ask why 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.”
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.
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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 mama and dada, 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.
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, André Djourno and Charles Eyriès 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.
The cochlear implant does not allow you to hear, but rather allows you to do something that resembles hearing. It gives you a process that is (sometimes) rich in information and (usually) devoid of music. Implanted early, it can provide a basis for the development of oral language. It makes the hearing world easier. Is it sound? One might as well ask whether a tree falling in an empty forest makes a noise. Some 219,000 people worldwide, at least 50,000 of them children, had received implants as of the end of 2010. Up to 40 percent of American children diagnosed under three receive an implant, up from 25 percent just five years ago. Some 85 percent of the children who receive them are born to white families with higher-than-average income and education levels. After the device has been surgically implanted, an audiologist works on mapping it, making a series of adjustments to ensure that it is tuned to the brain of the recipient.
The chief executive of the Cochlear corporation, the leading manufacturer of implants, told BusinessWeek in 2005 that usage represented only 10 percent of the potential market. The implant is sold in more than seventy countries. Some implant opponents complain of the limitations and dangers of the implant itself; according to the FDA, one child in four who receives it experiences adverse reactions and complications, most of which resolve on their own; some require further surgery. Some people have suffered disfiguring facial paralysis, and the implant interferes with diagnostic tests such as magnetic resonance imaging. A wire coming out of your neck can make you look like an extra from Star Trek, though it is possible to grow hair so the wire is generally hidden. Much of the cant about the danger of implants is alarmist; some propaganda about their transformative power is embellished.
A late-deafened adult who “regained” his hearing with an implant quipped that they make everyone sound like R2-D2 with severe laryngitis. Their approximation of sound often allows people who are already functional in spoken language to make sense of much of what they hear; however, people who have always been deaf and who receive the implants as adults often find them ineffective or just irritating. Unaccustomed to interpreting auditory information, the latter group might find it difficult to do so even if they were given perfect hearing; the brain develops around input, and a brain that has gone through development without sound is not organized to process it. But the extent of any individual’s brain plasticity is hard to predict. In a recent interview, a deaf woman who had received what she called “the bionic ear” in early adulthood described having vertigo at first, and then feeling as though golf balls were bouncing around in her head. “I felt like it was a huge mistake for about five hours,” she said. The next morning, she went out for a walk. “I stepped on a twig and it cracked. Leaves rustled. It blew me away.”
Deafness, which often used to go undetected until age three, is now regularly diagnosed within hours of birth, and almost always before three months. Screenings of newborns are now supported by the federal government. The NAD originally championed these screenings on grounds that deaf infants could get exp
osure to Sign as early as possible; now those infants often get cochlear implants instead. “That’s hugely painful,” said the activist Patrick Boudreault, who opposes the implants. “Genetic counselors and implant specialists are the first responders—not Deaf people.” Though the device is approved only for children over the age of two, children under a year old have been implanted. Hearing children learn phonemes throughout the first year of life, and their neural plasticity begins to decrease even at a year. A recent Australian study showed improved results for people implanted at seven or eight months, though the advantages to implanting before age one may not be worth the risks associated with anesthesia in babies. In another study, almost half of children implanted at two developed spoken language equivalent to that of hearing children their age; among those implanted at four, only 16 percent did so. For children who become deaf later—from measles, meningitis, or a developmental genetic condition—efficacy is linked to how soon the devices are implanted. Without sound, the neural architecture of the auditory cortex is permanently compromised.
These statistics are muddied, however, by their newness. Will someone implanted at seven months have a linguistic advantage when he’s twelve years old? No one has seen how these early cases turn out across the life span because they haven’t been done for long enough. Further, the devices being implanted now are different from the ones used even a decade ago. This means that all decisions about how early to implant children are based on speculation rather than experience.
One unintended consequence of the rise in cochlear implants is that they can make the parents of deaf children careless about language acquisition—which the FDA unfortunately failed to establish as one of the criteria for implant success in pediatric populations. Almost all children who have the implants show useful perception of sound, but with older implants, the sound was often too garbled to interpret as language. That problem is reduced but not eliminated with the newer implants. One study showed that almost half of implanted children had greater than 70 percent open speech discrimination (comprehending sound without visual clues); two-thirds had greater than 50 percent; and nine out of ten had greater than 40 percent. In a Gallaudet survey, nearly half of parents of implanted children believed their children “could hear and understand most words,” while only one in five said their children could “hear and understand few words.”
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