Sunday, April 30, 2006

DubiousWords

Dubious Benefits: Cochlear Implants in Question

In the basement of a medical building in Baltimore, Maryland, neuroscientist David Ryugo is keeping 12 congenitally deaf cats happy. It’s costing him $70,000 a year. Meanwhile, 250 miles south in a lab at Duke University, electrical engineer Leslie Collins persists in the same mission she’s had for the past 20 years: to carry many frequencies within few wires. At the University of Iowa, chief of Head and Neck Surgery Bruce Gantz is teaching surgeons how to rescue hair cells in the inner ear. And across the world in Australia, Rob Shepherd serves as acting director at a facility that’s home to “Australia’s finest scientists and research staff.” These four scientists share one mission: to make cochlear implants better. Money, effort, and energy have funneled into this goal for years—a goal driven by a view rooted deeply in the medical field, and epitomized in a statement made in 1853 by Prosper Meniere:

“The deaf believe that they are our equals in all respects. We should be generous and not destroy that illusion. But whatever they believe, deafness is an infirmity and we should repair it whether the person who has is it is disturbed by it or not.”

Meniere, a leader at Paris’s school for deaf youth, believed as Ryugo, Collins, Gantz, and Shepherd do after him, that speech could and should be a deaf person’s primary mode of communication. This view is shared by surgeons, speech therapists, and often the parents of deaf children. These people stand behind cochlear implants; they may mold their careers out of them.

Meanwhile, critics like deaf spokesman Harlan Lane question cochlear implants. These devices, they say, make deafness seem like a disability, when in truth, as Lane asserts, deafness is a culture. In his book, The Mask of Benevolence, Lane counters that the only reason Prosper Meniere, and the doctors and scientists after him, called repairing deafness a duty was because of fear: physicians wanted to keep their hands in the ear. But they knew then, as now, that many deaf people were not frustrated by being deaf, nor did the deaf see not hearing as a problem. Rather, they had grown accustomed to it. They embraced and were fully functional in their deaf culture—a world not easily understood by the hearing and speaking people outside it, but nonetheless, a world defined by its own, organic language and by distinct habits and views found nowhere else. Deaf people “speak” with their hands, incorporating flowing and fast gestures and colorful facial expressions into every second of their conversation. They are intelligent, driven individuals, as evidenced by the number of students earning higher degrees at Gallaudet, America’s premier deaf university, in Washington, D.C. They can function in the world at large, holding jobs and raising familes.

By keeping their hands in the ear, then, and by advocating implants, Lane believes that physicians and scientists are threatening this deaf way of life, especially for deaf children with hearing parents who see implants as the norm. Cochlear implants may mean the end of deaf culture, Lane asserts. The New York Times Book Review called Lane’s attack on implants, The Mask of Benevolence, “a tightly reasoned… persuasive and gracefully angry book.” Gracefully angry was just what he was during our February interview when I phoned him in his Boston office. Amidst the thousands of dollars and brightest of minds being dedicated to cochlear implants though, I needed to determine exactly what might keep someone from advocating them, exactly how these devices threatened the deaf way of life, and whether cochlear implants and deaf culture could co-exist.

In Lane’s mind, deaf culture and cochlear implants cannot co-exist. Beyond simply threatening cultural deafness by diminshing the need to sign, implants pose certain physical risks. “Once a child undergoes implant surgery,” he said, “the child is an implant patient for life.” Unlike other medical devices, such as implantable lenses for vision correction, for example, which can be removed if the eye changes, cochlear implants are permanent. What’s more, they completely destroy the inner ear. The surgery to implant them ruins any residual hearing a patient might harbor, erasing hopes that he will ever again hear on his own. This is an indisputable, biological fact, one with which everyone would agree. It is why some parents are hesitant to implant apparently deaf infants; they have no idea how much hearing their child might retain, but with the implant—the “heroic medicine,” as Lane calls it—all potential to hear naturally, however small, is lost.

Other physical risks of surgery remain clear and present, too, as they would for any procedure. A slip of the physician’s hand in the sensitive middle ear region, where drilling persists, has occasionally caused paralysis of regions of the face. The vestibular nerve, part of the auditory nervous system, has also been hurt in surgery, leading to long-term disruption of the patients’ sense of balance. Another risk associated with implants has been meningitis, a potentially fatal infection of the fluid near the brain. In 2003, the New England Journal of Medicine reported that the incidence of this infection was 30 times higher in implanted children than in those without implants. The FDA and the Center for Disease Control linked this incidence of meningitis to positioners, the small rubber wedges that enabled surgeons to more carefully position the devices deep within the inner ear. These wedges often harbored infection-causing bacteria, but fortunately, positioner-bound implants were only manufactured by one company—Advanced Bionics—and the FDA banned surgeons from using these models in 2002.

But physical risks like nerve damage and menigitis are just the tip of the iceberg. Psychological troubles created by implants, critics say, are far worse. Critics point out an irony inherent to these devices: meant to permit hearing and speech, they may actually leave children languageless for years. That’s because parents who spend $40,000 for an implant want their deaf child to be like them—to not merely hear, but to speak, and this speaking does not include signing. Many parents who pay for implants don’t encourage their child to sign at all in fact, Lane argued, and may even scold them for attempting it. Thus, for a period in their young lives, these children cannot sign, nor are they yet adept at understanding speech with an implant. And because parents develop hopes that the implant will make their child “normal,” they don’t take time to learn sign language themselves either.

To get feedback from the implant-friendly side and balance my query, I spoke with Dr. Lauri Rush, director of the Mental Health Center at Gallaudet University, and mother of a three-year old deaf girl with cochlear implants. Dr. Rush could not have disagreed more with Lane’s arguments on langaugelessness. Her three-year old daughter, implanted just a year ago, can sign very well, which both Dr. Rush and her husband have encouraged, but her daughter also speaks, and signing is not taking away from her ability to excel at it. The Rushes have enrolled their child in speech therapy courses, where she works with a trained audiologist to improve her listening and speaking skills.

And rather than leaving the girl languageless, Dr. Rush said that implants are doing just the opposite for her child: “I wasn’t worried about my daughter growing up deaf because I know lots of successful deaf people here at Gallaudet,” she said, “but I was worried that she wouldn’t understand written language very well, which is a common problem for deaf people. And I wanted her to be able to read, and now with the implant, she can hear better and so she can read pretty well, too.” Rush said her daughter is reading up to 30 words at this point, an accomplishment for any three-year old.

Surgeons who perform implant surgeries advocate this route of training in spoken language, rather than sign language, for their patients. Lane says this is a problem because research shows that throughout schooling or life, the typical implanted child will rely on some form of sign language. And since developmental milestones exist for signing, just as they do for spoken language, a child prevented by parents from practicing it will never master it. He will not master it, either, if he practices it too late, which occurs when parents wait to permit sign language until they find that their child is making little progress with an implant.

This delayed opportunity to master a language—whether signed or spoken—could, Lane argues, prevent a child from fluently exchanging messages with and learning about the world around him. It could delay the normal growth of the child’s intellect, in other words. Implant critics would say this occurs too often in implanted children, for neither their implants nor their hands permit full communication, and they are forced to straddle two languages ineffectively. Lauri Rush’s experience shows that this doesn’t have to be the case. She has shown that a child can effectively communicate with both sign language and cochlear implants and that having her daughter sign has not taken away from the child’s ability to be successful with her implant.

Rush’s willingness to learn sign language as a parent and to encourage it for her implanted daughter is unique, Lane says. It is not to be expected in a family that commits time, emotion, and money to the implant process. This conflict of interest is not apparent in families where both the child and parents are deaf, however, and so rarely do “deaf of deaf” children experience a delay in language mastery; even if they do undergo implant surgery, their deaf parents encourage them to sign from an early age, arming them with language from the get-go. And now, according to Rush, three “deaf of deaf” students have been implanted at the deaf elementary school near Gallaudet University. These students’ deaf parents chose to implant their children, just as Rush, a hearing mother, chooses to sign with her daughter. Implants for “deaf of deaf” are a rare occurrence, and this step reflects the beginning of an acceptance of cochlear implants in the deaf community.

Critics like Lane still worry. They feel that cochlear implants impinge upon identity. “A partially successful implant,” he explained, “may be worse [for a child’s identity] than none at all.” Implants, he says, can deny deaf children a clear sense of self. Once a child undergoes surgery, his ability to develop as a deaf person is hindered by the family’s commitment to the implant process—the intensive training for speech and hearing, the auditory benefit the implant provides, its visual appearance, and by the possible delay in acquiring sign language.

That the child will be able to develop as a hearing person either, though, is unlikely. Deaf children—even those with implants—are different from hearing children; though they gain hearing, many never lose their connection to the deaf world, or their inclination to sign. They typically grow up in schools with other deaf children, all of whom have habits—gestures, facial expressions, tendencies to touch—unlike those of hearing people. And when deaf people with implants go to get jobs, employers are often hesitant to consider them; though their hearing might be reasonable or even good, the implanted deaf still can’t always speak perfectly. An employer given the chance to hire either a hearing person or a deaf person with implants would likely choose the former, if for no other reason than his fear of the unknown, even if both were equally qualified.

Thus, a deaf person with implants will feel alienation from his new group, the hearing world, since he will not always be fully accepted or comfortable there. Simultaneously, he will maintain enough loyalty to his original group, the deaf community, that things said and done to discredit them will likely offend him. As such, an implanted child may slip between two potential sets of friends. “[He will] tend to be culturally homeless,” writes Dr. J. William Evans at the University of California Center on Psychosocial and Linguistic Aspects of Deafness, “belonging to neither the deaf nor the hearing communities.” Here again, Rush disagrees. Her daughter goes to school with deaf children who have implants, and with deaf children who do not. “They all play together,” she said. “And the older deaf students here at Gallaudet are becoming more accepting, too. I’ve heard them say that they realize their peers with implants still have difficulties. They still face problems hearing, despite the technology. They’re still deaf.” At Gallaudet at least, it seems that the deaf are realizing the limitations of cochlear implants and instead of categorizing their implanted peers as sell-outs, they are respecting their decision.

Lane says that psychological troubles associated with implants are faced not just by the children wearing them; some difficulties associated with cochlear implants are unique to the parents. An implant that does not live up to expectations may cause Mom and Dad to suffer a second cycle of regret and acceptance, just like the one suffered upon learning their child was deaf. Rush acknowledged experiencing a grieving period, which lasted several weeks, after her own daughter was identified—not diagnosed—as being deaf. But she has not grieved since because the implant has been a success. Stresses related to implants do sometimes mount as parents struggle to teach initial speech skills. While specialists initiate much of this teaching, the majority must progess at home. Rush did not deny this hurdle, but when she cannot understand her daughter’s speech, the two of them sign and communicate perfectly. Another stress Lane proposed might be the money involved in purchasing and maintaing an implant. Raising enough funds for the many medical and paramedical services an implanted child requires strains relationships, and while most third-party health insurance plans provide some benefits, a good part of the follow-up care and the training has to come from parents’ personal savings. “I’ve seen them hold raffles, sell ice cream, appeal to the generosity of neighbors and relatives,” said Lane. “Anything to get enough money to pay for this process.” But the process, Rush would say of her experience, has been completely worth the price.

Above all, though, Lane feels that hearing parents of deaf children with implants face obstacles on a social plane. Their plight is much like that of white couples who adopt a black child. Again, this wasn’t the case for Lauri Rush, who found little opposition from the deaf community when she asked various faculty and friends at Gallaudet how they felt about her decision to implant her daughter. “Only two people responded negatively,” she recalled.

Rush’s experience may not speak for the deaf world at large, but it provides hope that families who embrace implants can maintain respect for deaf culture, a respect which appeases the deaf, and that these families will perpetuate the deaf world’s strongest custom—sign language—despite taking a step associating them with the hearing world. Yet, Lane still believes that the option implants provide is an option that breeds intolerance. Parents who choose not to use implants for their children are often asked why they would deny their young ones the chance to hear, instead of being acknolwedged for the efforts to embrace deaf culture.

Truthfully, Lane was moderately convincing on the other end of the phone; his laundry list of explanations for why one might avoid an implant was, if not “tightly reasoned,” at least reasonable to me. Yet because Lauri Rush has so successfully fostered co-existence of implants and sign language under one roof, and because she has taken little heat from the deaf community for her decision, I won’t buy Lane’s accusations that cochlear implants disable deaf culture.

Furthermore, before Lane hung up, he gave me one more reason to doubt him, and this reason was science-based. He said that no evidence exists to date that implant surgery must be done within a certain time period in a young child’s life in order for the child to reap maximum benefits. Implanted early or late, at 1 year or 3, he said, the child will benefit the same; he won’t acquire language at a faster or more thorough rate, regardless, and he’ll probably rely on signing at some point anyway. In other words, implants could never be guaranteed to provide great hearing. Lane based this claim on the notion that scientists have not yet identified an exact critical period—or window of time in which cochlear implants must expose children’s developing brains to spoken-language input. Scholars have argued for years that such a period exists. Already, cochlear implants inserted at early and late stages of childhood are helping deaf youths to better hear language, so that they can speak and read it more clearly, but the arrival of an implant during such a specific window of time would likely ensure that the child receiving the implant could function—hearing and speaking—with little or no problem, meaning that the surgery, the training, the stress, the money, and all the other investments would provide a certain and strong return. But Lane was quick to point out that the scientific literature has failed to provide clear boundaries as to when such a hypothesized critical period might begin and end.

I didn’t tell Lane about David K. Ryugo and his research with congenitally deaf cats. I wonder how he might have responded, to know that in the basement of Traylor Hall at The Johns Hopkins Medical School, the critical period is, for the first time, beginning to be defined and understood.