“The doctors took the clothes off, stripped him buck naked, and he was just . . . limber. The first thing the doctor came and told me was ‘Miz Taylor, what animal bothered him?’ He knew. ‘What you got to do,’ he said, ‘when you get home, you call the cops and you have them find that dog. And hope the dog didn’t lick nobody else, because whatever that dog had, he gave it to your son.’”
Three months later James was well enough to return home, but the illness had left him weak. He was like a newborn baby, according to Mrs. Taylor—couldn’t walk, couldn’t talk, had to learn everything over from scratch. And he had lost his hearing.
James remembers it differently still; he believes he became deaf from a fall. He has a vision of going fast down a flight of stairs, his body pitching forward, out of control. Or else, he thinks, it was the result of high fever; there is that, too—an image of being hot and dry, his mind weaving and branching like curls of smoke inside his own body. These two memories, slippery and incomplete, have somehow become entwined with the cause of his deafness.
But for James, the history of how he became deaf is not important, just as the story of how he lost his most recent hearing aid (four months ago, at a Labor Day party in Prospect Park, when he took it off because the bands were playing so loudly it hurt, stuck it in a pocket, and never saw it again) is not important. Marginally more important is the future, both in terms of planning how he will fend for himself as a deaf man in a hearing world and in terms of how he will obtain a new hearing aid. Today, however, he would simply like to get a Lexington loaner aid.
Hearing aids can cost between $400 and $800 apiece. Lexington buys aids wholesale or secondhand for about $100 each; these are lent to children who are waiting for their aids to be repaired or replaced. When a student loses a loaner, Lexington sends a letter home asking the parents to pay $50 toward the cost of replacing it. During the past five years, James has lost three. Lexington has not received any money for them. His chances of getting a loaner today do not look promising. James is neither hopeful nor hopeless; with his standard equanimity, he will wait and see. He leaves this decision, like almost everything else, to fate or higher powers.
The audiologist is sending a series of tones into the chamber where James sits. Whenever he hears a tone, he raises his hand. For each frequency, the audiologist records the lowest decibel level at which James can detect sound. She maps these responses on a graph. The responses for each of the three middle frequencies are averaged; this number is called the pure tone average. Although a complete audiological exam includes various other data—impedance testing to check middle-ear functioning; spondee threshold and speech detection threshold testing to measure the volume at which the subject can identify actual words—the pure tone average is the figure most commonly used to describe the degree of hearing loss. Volume is measured in decibels, or dBs. James’s pure tone averages are recorded as 118 dB in the left ear and 120+ dB in the right ear. This means that without a hearing aid, he can detect only sounds that are 118 decibels or greater, such as the sound of a lawn mower or a jet plane.
A child must be profoundly deaf to be admitted to Lexington. Most students meet this criterion by having a hearing impairment that measures 80 decibels (about the volume of a garbage disposal) or greater. A few students are able to attend by meeting other criteria; although their pure tone average is under 80 decibels, they may have such difficulty in using residual hearing for spoken communication that they meet what is known as a functional definition of deafness. The common bonds—behavior, communication style, identity—are more cultural than medical.
James, listening closely for the pure tones, raises a hand to signal that he has heard something. The audiologist makes an adjustment and glances back at him—this time no response. Another adjustment—still nothing. She makes a motion as though turning yet another knob and checks James again, raising her eyebrows and holding thumb and index finger narrowly apart: Do you hear it just a little? James hesitates, then nods helpfully: Yeah, faintly. But this time the audiologist has sent no tone. She is not trying to trick James, nor is he wittingly offering false responses. An affirmative response to silence is not uncommon; in his effort, James may really believe he has detected a sound. The audiologist is merely trying to gauge how often James might volunteer these responses so that she can assess his overall results more accurately.
Paul, who has managed to comply with the audiologist’s request to move to a different chair and still remain within James’s view, now raises his own hand in parody. James shakes his head and laughs. The audiologist is instantly suspicious. Stories about students mischievously faking responses on their hearing tests abound; many deaf adults reminisce about such capers fondly. She narrows her eyes accusingly at James, who laughs helplessly and points to Paul. “It’s not me, it’s him.”
She whips around. “What are you still doing here?”
“I need a pass to go back to class.” He flips the signs with the bored finesse of a blackjack dealer.
“What? Use your voice.”
“Pass. I need a pass.”
“Oh.” She writes it out on a yellow notepad; he palms it and saunters out the door. Paul will not graduate with James this spring; not yet twenty-one, he has decided to spend another year at Lexington.
Although they both live in the dorm this year, James and Paul are not as close as they used to be. Once they were wild together; they were trouble from their days at St. Joseph’s straight through their first few years at Lexington, when they spent mornings drinking orange juice together in the high school office. Then, about two years ago, as James started doing better in school, he began spending more time with college-bound students. Casually, incrementally, he changed course, as if by instinct sluicing off old patterns that dragged him down, gravitating toward those that would buoy him. But it must never look deliberate; only inadvertently will James allow himself to be saved.
“Baseball,” the audiologist is saying. They are on the home stretch: the spondee test. Spondees consist of two equally stressed syllables. James is supposed to repeat the words back to her. “Ice cream, cupcake.” Speaking through a microphone, she holds a piece of paper over her mouth so he can’t read her lips through the window. “Cowboy. Airplane.” She increases the decibel level. “Snowman. Hot dog. Hot dog. Try and guess. Hot dog. Rainbow. Try, please? Just try. Rainbow. There’s no right, no wrong. Just guess. Baseball. Cowboy. Cowboy.”
At last they are through. James, rubbing his ears, opens the door of the soundproof chamber and steps down in his Georgetown sweatshirt and new bullet-shot jeans. “Boring!” he signs. “Hurts my ears.”
The audiologist fishes in a desk drawer for a small cardboard box, from which she plucks a baggie labeled with James’s name. “Okay, your new molds came in.” She holds it up, displaying the chocolate-brown ear molds inside. A colorless plastic tube sprouts from each mold; this piece plugs into the aid itself, a plastic crescent that hooks behind the ear. “I’ll fit the molds now,” she tells him, using about one sign per sentence. “But I’m only going to give you the loaner when you have an appointment at the hospital.”
Because Medicaid will pay for his new aids, James must have a referral from a Medicaid facility, which Lexington is not. He will need to repeat today’s exam at Roosevelt Hospital before the new aids can be ordered. The audiologist, astutely predicting that once James has the loaner aid he will be less likely to pursue getting his own, will hold his molds and the loaner aid ransom, in effect, for proof that he has made strides toward that end.
She fits his brown molds to beige Lexington loaners. James twists them into his ears and the audiologist tests them, first the right, then the left. “Can you hear me?” He shakes his head. She adjusts tone and volume on the curved receivers. “Can you hear me now?” Nothing. She fiddles again with the switches. “Can you hear this?”
The sounds of regular speech can be plotted on an audiogram as a series of points that extend across the entire range of
frequencies and form a curve between about forty and sixty decibels. If you colored the area with a yellow crayon, it would look like a banana placed horizontally on the middle of the sheet of graph paper. The audiograms of most Lexington students dip way below the banana. The idea of hearing aids is to give these results a boost, to make the sound a person could hear at, say, ninety decibels (as loud as a food blender), audible at sixty decibels (normal conversation). Amplification doesn’t automatically yield clear speech, but it can produce clues to help a person decipher speech better. Ideally, hearing aids will give James at least partial access to spoken communication, will get him within the banana.
When the audiologist is satisfied at last that both of the aids are working properly, she seals them back in the baggie, which she dangles between finger and thumb. “Look. Look. In my drawer. When you’ve made the appointment, let me know and you’ll get them.” She drops them in and slides the drawer shut.
James flashes her a gloriously injured smile, then tosses his head back and laughs. “Put me in jail! I keep losing Lexington loaners, they’re going to put me in jail!”
But as the audiologist bends to write him a pass back to class, the clownish good nature rapidly wilts and he shakes his head. “Borrrrring.”
Under the clock, James waits alone. He has been sitting in this chair in the Developmental and Disabled Center at Roosevelt Hospital for fifty minutes, and the odd empty hum of lunch hour makes him drowsy. Red and white balloons, gone puckery in the three weeks since New Year’s, droop from the ceiling. All he can glimpse of the receptionist, bent over papers behind a high counter, is the top of her head: rigid, gold-trussed cornrows. Now and then he feels as though someone might come through the swinging doors from the hall, but each time the vibrations subside with no evidence of life.
James is missing lunch, career ed, and woodshop to be here. Louis Taxin, the dorm supervisor, offered to accompany him to the hospital, but James declined and took the subway out from Jackson Heights alone. As it was, he had to rely on the school social worker and then the nurse to make and confirm the appointment for him over the telephone. So many details of his life seem automatically to become common knowledge, parceled out and shared among teachers and guidance counselors and social workers and health workers and dorm staff. He figured that taking the subway to Columbus Circle and walking over to Ninth Avenue was something he could manage on his own.
A narrow woman dressed in black comes at last to tell him that the doctor in ENT can see him. She signs a little bit, this woman who turns out to be a nurse, crooking her narrow, big-knuckled fingers into semblances of meaning. She leads him through the swinging doors, down cool, pale corridors, into a cramped room, where James immediately takes up residence in the examination chair. He sticks his feet, impressively shod in brown leather boots, onto the metal footrest and anchors his elbows on the armrests, as though returning to his throne.
The doctor enters with his head low and his arms behind his back, one hand grasping the opposite wrist. He is a short man whose pallor nearly matches his lab coat. He straightens before James, rounds his lips. “I’m just going to look in your ears.”
James removes his black-and-gold Michigan baseball cap. The doctor performs an impedance test, using a slender metal device to exert pressure on the tympanic membrane of each ear. It takes less than one minute. He jots something on James’s chart.
“That’s the easiest test you’ll ever have!” the nurse congratulates James, who smiles politely and bobs his head.
The doctor and the nurse bend their heads together. James sees the doctor skim a finger down his chart. They appear to be making a discovery, or a decision. He cannot see their faces, and they do not look directly at each other, but hearing people often talk that way. James, waiting patiently, starts to remove his leather Polo jacket, which he bought on the street with the $150 his father gave him for Christmas.
“Tell him not to get too comfortable,” the doctor tells the nurse, making one last notation on James’s chart. “We’re not going to be long.”
It isn’t until James gets back to Lexington, where the audiologist deciphers the doctor’s scrawl, that he discovers he has been recommended for a cochlear implant evaluation.
The cochlear implant, a source of bitter contention between the deaf community and the medical community, is a device that changes sound waves into electrical impulses that are then transmitted to the brain and interpreted as sound. Implantation requires surgery to fit the device, with its magnet and decoder and tiny electrode-studded coil, into the snailshaped cochlea of the inner ear. After surgery, another magnet fits on the skin behind the ear, with a transmitter and a microphone. A wire connects these to a speech processor, which can be clipped to clothing or worn like a pocket calculator.
The implants were researched and developed over three decades in centers around the world before the Food and Drug Administration (FDA) approved marketing them for children between the ages of two and seventeen in 1990. The National Association of the Deaf (NAD) reacted to the FDA’s approval by establishing a task force of its own, which came out staunchly against implants in children. Calling the FDA’s approval ethically and scientifically unsound, the NAD takes the position that implanting deaf children robs them of their freedom of choice.
During implantation, the tiny hairs of the inner ear that normally activate the auditory nerve get torn and crushed. Once this has happened, the effects are irreversible; even if the device is removed, any residual hearing that might have existed will have been obliterated. So if the implant is unsuccessful—the definition of success including not only healthy recovery from surgery but also learning how to interpret speech from the implant’s electrical signals by working with rehabilitation specialists, who may include audiologists, speech-language pathologists, psychologists, and educators—the child won’t ever be able to benefit from a regular hearing aid.
Advocates say that children are the ideal recipients of implants because they can become accustomed to deciphering the electronic signals early on and thereby benefit fully throughout their school years and as adults. The Cochlear Corporation targets children with a coloring book depicting an anthropomorphized cochlear implant. Drawn with a firm but friendly smile, clenched fists, outstretched muscled arms, and the letter S emblazoned on its chest like Superman, it is shown soaring through space to remedy the bad, damaged ear. The deaf community finds such propaganda grotesque, the message insulting and reeking of prejudice. They perceive the medical profession, in its patronizing zeal to “cure" deafness, to be attacking their worth as deaf people and absconding with the community’s most valued arid cherished resource, its very future: deaf children.
For centuries the deaf community has struggled to forge relationships with hearing parents of deaf children, both to ease their adjustment to deafness and to offer proof that deaf people do grow up to lead successful, happy lives. But many hearing parents resist these efforts, fearful that they will lose their children to this other, foreign family. Now the Cochlear Corporation is courting these parents with the opposite argument: we can make your children more like you, less like them. If parents can’t be faulted for feeling relief at these words, neither can deaf people be faulted for feeling hurt and angry.
In the whole imbroglio, however, a few criteria on which both sides agree do exist. Because of the irreversibility of the damage to the inner ear that occurs during implantation, people who already benefit from regular hearing aids, who make any significant use of their residual hearing at all, are not considered candidates for the surgery. This is undisputed common knowledge. James’s medical chart clearly shows him to fall into this category. Yet the doctor at Roosevelt Hospital recommends him for a cochlear implant evaluation.
Cochlear implants are still fairly new to most physicians, many of whom are more likely to have read in medical journals that they are the new panacea for deafness than to have any empirical knowledge of them. Roosevelt Hospital doesn’t even perform the
surgery; currently, only two facilities in New York are equipped to do that, the Manhattan Eye and Ear Hospital and, only recently, the New York Eye and Ear Infirmary. The doctor’s assessment displays exactly the hasty enthusiasm that the NAD has rallied and cautioned against. It is a product of the well-intentioned but narrowminded zeal of the medical profession in this matter.
The doctor may have based his conclusion on James’s fairly good speech and the fact that he could hear until age five; the conclusion makes some sense if the doctor has read or heard that people who become deaf after learning English are better able to reconstruct the sounds of speech from the electrical impulses transmitted by cochlear implants. But his determination is short-sighted, or he is only partly informed, because James’s medical chart shows that he benefits significantly from hearing aids and that his deafness was caused by bacterial meningitis. Within a year and a half of the occurrence of this disease, the inner ear ossifies, or develops a bony growth that virtually blocks the insertion of electrodes. Unless a child undergoes cochlear implant surgery immediately after the disease, before ossification, the device will be of little use. In James’s case, thirteen years have passed, making him a highly unlikely candidate even if he were to meet the other criteria.
Suppose for a moment that James did meet all the criteria—that is, that his cochlea were not ossified, that he received no benefit from hearing aids or tactile aids (which vibrate rather than amplify sound), that he had strong parental support and commitment (even the Cochlear Corporation stresses the importance of this for successful rehabilitation), and that during psychological and cognitive evaluations he demonstrated the potential to learn how to adjust and make efficient use of the device. Supposing all of that, the doctor’s recommendation still may not be sound.
Train Go Sorry Page 11
