Washington Post Article

Washington Post Article

As Technology Advances, a Bitter Debate Divides the Deaf

By Marie Arana-Ward Washington Post Staff Writer Sunday, May 11, 1997; Page A01

When Kate and Peter Heitman took their seats at a convention hall in Norwood, Mass., last winter, they did not realize they were in a battle zone. The speaker was Harlan Lane, the deaf community’s most vocal spokesman. The men and women who had come to hear him, such as the Heitmans, were parents of deaf children.

The subject was the cochlear implant, an electronic hearing device that is surgically inserted into the inner ear, enabling a deaf person to perceive sounds and, in the best of circumstances, to hear and speak. The Heitmans’ 7-year-old son, Stephen, who was born deaf and had had one for five years, was an incessant chatterbox, reading three years above grade level. So they were startled to hear Lane say there was not one known case of a child acquiring language with an implant.

When Kate Heitman raised her hand and offered to bring her boy forward to demonstrate his fluency, Lane waved her away. "With all due respect, madam," he said, "I don’t need to meet your son."

Lane still refuses to talk to Stephen. "Cochlear implants are bad medicine," he says. "Pure and simple."

The question of how to raise profoundly deaf children, either within the small, specialized world of American Sign Language or by teaching them to mimic speech they cannot hear, has always been a divisive issue among the deaf. But now the cochlear implant, a medical breakthrough approved for use in children only seven years ago, has the potential to change the debate. At the very minimum, an implant enables a deaf child to sense environmental sounds, a honking horn, a growling dog, a roll of thunder. At the optimum, it can bring a child into the mainstream oral world.

But because of its emphasis on the oral, the implant has drawn fire from a small but industrious movement known as Deaf Culture, which says the emerging technology is a threat to a deaf child’s "birthright of silence." Deafness is a condition to be celebrated, the movement’s leaders say. If science eradicates it, a whole way of life will die.

As a result, Deaf Culture has declared war on the implant, possibly making the device the first medical innovation to be rejected by some leaders of the community it was meant to serve. The war between the movement and the supporters of the implant is one of disputed research, passionate certainties and a dearth of communication. And children are at the heart of it.

The Medical ‘Miracle’

Unlike a hearing aid, which amplifies sound, a cochlear implant feeds electrical impulses directly to the brain, doing the work of damaged hair cells in the inner ear. Since its release, 14,000 devices have been surgically inserted into deaf people in this country, most of them into children.

That represents a mere 4 percent of all profoundly deaf Americans. But it is the recent growth rate in implanting very young children—who either are born deaf (congenital) or have become deaf before learning to speak (prelingual)—that infuriates Deaf Culture proponents. Today, one deaf child in 10 has a cochlear implant. In the next decade, projections suggest, the ratio will grow to one in three.

Deaf Culture activists maintain that those children are sure to be failures—deprived of the dignity of their deafness and yet never accepted as full members of the hearing world. They say that choosing to implant children is irresponsible, done for the convenience of hearing parents. At the very least, they argue, deaf children should be allowed to wait to make the choice themselves. They recommend that deaf children be raised by the deaf community, using American Sign Language, in one of 85 residential schools scattered across the country. Trying to "fix" a deaf child, they say, is like trying to fix someone because he or she speaks Japanese.

On the other hand, the doctors and therapists who work with implant cases point to thousands of those children who board school buses every day, speak English in mainstream schools and aspire to jobs that will require them to hear and speak. An implant, they say, could open the door to a better future.

The statistics the deaf have gathered about themselves are grim. The average deaf person today reads at a fourth-grade level. One in three drops out of high school. Only one in five who starts college gets a degree. Deaf adults make 30 percent less than the general population. Their unemployment rate is high, and when they are employed, it is usually in manual jobs such as kitchen workers, janitors, machine operators, tailors and carpenters, for which a strong command of English is not required. Children with implants, the doctors assert, if prepared well and encouraged to speak, have a whole world of opportunities to choose from.

"Deaf spokespeople are always talking about their ‘God-given talent for sign’ and that we’re robbing them of that ability by having them focus on speech," says John Niparko, an implant surgeon at Johns Hopkins University. "But the fact is that there is a very complex neural pathway in each child from the auditory nerve to the brain. That part is normal in most deaf children—and it’s a God-given pathway. If the hair cells in the cochlea are not doing their job, that incredible pathway just sits there unused. All a cochlear implant does is activate a God-given thing."

Activation alone, however, is no guarantee. Some children become frustrated by the work that must follow implantation. And some, particularly adolescents, abandon the implant in favor of a life among deaf peers.

It’s the implant "failures" whom James Tucker, superintendent of the Maryland School for the Deaf, sees.

"I’ve invited the surgeons here to see these kids for themselves," he says. "They never come." And if they don’t come, he adds, how can they understand what a teenager is going through when he or she yanks off a processor and refuses to turn it back on? "We are the dumping ground," he says. "If only they would talk to us first."

Much of the confusion about the implant stems from its newness: Not only is the technology constantly being improved but the follow-up research also is rarely more than five years old. Case studies taken at random can be misleading. "They trot out the stars," says Harlan Lane, "and thousands are duped." A New York 7-year-old, born deaf and implanted at 2, can speak five languages perfectly; a 14-year-old in the Washington area, born normal, deafened by meningitis and implanted later, can hardly speak at all.

Two years ago, the National Institutes of Health held a Consensus Development Conference on Cochlear Implants to study the issue. Its conclusion: The cochlear implant’s "benefits have been observed in children, and there is evidence that those benefits improve with continued use." When asked about this, the National Association of the Deaf produced a news release it has been using since April 1993: "There is no evidence of material benefit from the device in this population, and no evaluation of long-term risks."

As Tucker puts it: "A noted doctor once admitted that the implant technology is still in its infancy, kind of like the Wright brothers’ airplane. Now, ask yourself this: Do you want to fly to Paris from BWI in a Wright brothers airplane?"

Donna Dickman, executive director of the Alexander Graham Bell Association, says: "Mr. Tucker is entitled to his point of view. But I’ve traveled this nation talking to children with implants. I’ve watched them debate, speak foreign languages, compete in spelling bees, sports events, cheerleading competitions, you name it. And I’ve watched them be just one of the kids. If this technology is in its infancy, just imagine what their future holds."

‘I’m in the Real World’

Louis Weiss, a senior at Bethesda-Chevy Chase High School, is an outgoing 17-year-old honor student with sparkling eyes and an impish grin. He runs track, chats in French and Spanish, loves to argue, loves girls, reads Vonnegut, scored 700 on his math SAT, wants to be an aerospace engineer and has had a cochlear implant for 14 years of his young life.

Born to hearing parents, as 90 percent of deaf children are, he contracted a severe case of meningitis at 10 months. When the fever lifted, he was profoundly deaf. His mother noticed it first.

"I would get under his crib while he slept," recalls Judy Weiss, an advertising creative director in Bethesda, "and yell and carry on. He just didn’t respond." When she took him to an audiologist, she was handed a paper certifying him as deaf. "I saw a psychologist, a deaf interpreter, a deaf teacher. They all said I should drop my expectations and that Louie should learn to sign."

Judy started to learn American Sign Language (ASL) but ended up preferring cued speech, a system in which the speaker uses hand signals to clarify the basic phonemes in spoken English, to make lip reading easier. She did not want to translate her conversations with Louis into a completely new language. (ASL is a full linguistic entity unto itself. See box, this page.) "I wanted to be able to blurt out whatever I was feeling," she says, "to get English into him immediately." The whole family learned to cue. Eventually, so did Louis.

By then, Judy and her husband, Joseph, an architect, decided to give up their respective businesses in St. Louis and move to the Washington area, where there was an active circle of cuers. Washington in general is an attractive place for the family of a deaf child. In the area are Gallaudet University, Western Maryland College, the Maryland School for the Deaf, the Alexander Graham Bell Association, an engaged Maryland school system, the NIH, Johns Hopkins and a whole host of other national associations and educational entities committed to the advancement of the deaf.

Within months of their arrival, Judy was out strolling on a Maryland beach with Louis, passing a woman and her dog. The dog growled at Louis, but the little boy—not hearing the sound—approached it unafraid. When the dog leapt out to bite, Judy pulled Louis back, horrified. "What is he, deaf?" the woman said with a sneer. "What are you, blind?" responded Judy, pointing at the No Pets sign. But the incident was grave evidence that without the ability to hear, her child was in danger.

Judy attended a cochlear implant presentation soon after that. It was 1983, 22 years after William House had started his clinical trials of the device in California. Eventually, the Weisses flew to Los Angeles to seek House’s assistance. By the time he was 3, Louis was fitted with a cochlear implant, one of a handful of pioneer children to be given the opportunity.

When Louis returned to Bethesda, he was still deaf—the cochlear implant is not a cure—but with the flip of a switch, he could admit a world of sound. The sensory rush was constant and bewildering; not until much later would he learn how to sort through it.

"I love my implant," Louis says today, with a slight slur that is characteristic of some cochlear implant wearers. Apart from the fact that the Montgomery County school system provides him with a cuer in school, he seems no different from any other teenager there. "I’m in the real world. I don’t care about the so-called deaf world. When I went to testify on behalf of the implants, I saw them, the people from the school for the deaf. They said we were making fools of ourselves. I just ignored them. I’m happy with who I am. I want a real education, more work, more responsibility. Next year, I’m going to go to Arizona State University and get into life. I’m ready."

Judy Weiss expresses no doubts about the decision to implant Louis. She remembers hearing a talk-show host ask an activist for the deaf whether he expected employers to hire an interpreter every time they hired a deaf person. The spokesman replied: "No. You don’t need an interpreter to run a Xerox machine." "Well," says Weiss, "I want more for Louie than a career running a Xerox machine, thank you very much. And guess what? So does Louie."

‘The Kids Were Mean’

Brent Sunderland, of Frederick, Md., wants the best for his son, too. Sunderland and his wife are physicians—he’s a psychiatrist; she’s a pediatrician. When they learned that their son, Jason, was deaf, they moved from Texas to Maryland to avail themselves of the area’s good services. When Jason seemed a good candidate for a cochlear implant at age 2, they got him one. When a better model came along, they got him that. When the second implant didn’t take, they got him a third.

"He had dramatic effects with the third one, and his speech acquired a nice phonetic quality," Jason’s father says.

But something happened when Jason turned 14. "He didn’t want to use his implant at all," his father recounts. "He was struggling, trying to get by socially and academically, and he realized just how different he looked. The wires. The effort. He became angry and oppositional, talked back to teachers, got detentions. Longer questions would confuse him, and he would get lost in class, fall behind. When he started to get into physical fights, we decided to take him out and put him in the Maryland School for the Deaf."

Today, Jason is in the eight grade at the School for the Deaf, communicating in sign. "Public school was so crowded," he says, "and the kids were mean." Jason uses his cochlear implant sometimes when he is at home, talking with his family or listening to CDs. But at the school, where students take a dim view of anyone with an implant, he leaves it off. "I like having deaf friends," he says. "I’m happy to use sign." His new girlfriend, an ASL user, can’t communicate in anything but sign.

"If we had it to do all over again, we would do the same," Brent Sunderland says. "We always suspected he’d switch to Deaf Culture at this age, but we wanted to give him an advantage if he ever wanted to use it." The Sunderland family is now learning to sign.

And what will Jason do when he grows up? "Probably go to a technical college," his father says, "maybe become a carpenter. He’s always been good with his hands."

The Dispute

Western Maryland College has the largest teacher training program in deaf education in the United States, and the students there are largely "deaf of deaf", children of deaf parents, raised using sign language. They have fluency and sophistication in ASL that are rare and exciting to observe.

In a graduate linguistics class, two young women are gossiping in the corner, flapping their hands and grinning (the teacher frowns at them to be quiet). An impassioned debate builds on how best to teach language. Hands punch the air; torsos lean into the fray.

Hearing people are always surprised to learn that deaf parents in neonatal wards cheer when they are told their babies cannot hear. Deaf Culture families see any effort to teach the deaf to speak as repugnant: The ASL sign for cochlear implant is a two-fingered stab to the back of the neck. "Let me put it this way," says Judith Coryell, head of Western Maryland’s deaf education program and the mother of two deaf children. "Say you were black. Do you think you’d be considering surgery to make yourself white?"

The deaf have known extraordinary prejudice through the centuries. Before 1750, to be deaf was to be retarded, uneducable, even possessed. Many of the "afflicted" were sterilized, committed to asylums and institutions, their hands tied behind their backs to prevent them from communicating.

Not until the 1960s, when the civil rights movement burst upon the scene, did the deaf begin to consider their own "ethnic" possibilities. Differences were celebrated; ideas of cultural cohesion were discussed. Quite coincidentally, at the start of that decade, when an epidemic of German measles swept the country, many children were made deaf, and the population boomed. In 1973, a federal law was passed mandating the education of handicapped children in the public schools. At the same time, linguists pronounced ASL an official language. By the 1980s, when the rubella bulge came of age, a strong, militant "deaf pride" leadership had emerged.

At Gallaudet University, I. King Jordan became the first deaf president in 1988 when a core group of six Deaf Culture militants, all in their late twenties, orchestrated student demonstrations against a hearing president. Deaf people across the country were galvanized by the image of students raising their arms in unified protest. Residential schools began to hire deaf administrators, and courts began to issue severe penalties against anyone who was shown to discriminate against the hearing-impaired. Sign-language interpreters have become a common sight today, as have close-captioned TVs, TTY's (text telephones for the deaf), relay services, assistive devices and a new generation of hearing aids.

With this heightened awareness, however, has come a radical segment: those who call cochlear implants "the devil’s work"; who consider Miss America 1995, the deaf Heather Whitestone, a charlatan because she speaks; who picket oralist deaf schools and stop parents of children with implants in malls, demanding to know why they butcher deaf babies.

That kind of ardor doesn’t sit well with deaf people who have grown up happily with cochlear implants. "I so don’t identify with hearing-impaired people," says T.L., a Manhattan high school senior bound for Brown University and another of William House’s pioneer children who has had an implant for 14 years. "I’m glad my parents decided to let me be like everyone else." Her parents, however, are afraid enough of the radical elements of deaf culture to not allow her name to be used.

"I hear plenty about the point of view of Deaf Culture," says Christa Lopez, executive vice president of the student body at Loyola Marymount College in California, who became deaf as a toddler and was fitted with an implant at 16. "I want my voice heard, too. I want people to know how good an oralist’s life can be. It takes hard work, but it has a big payback."

Susan Abrams Pollack, 25, doesn’t like the word "oralist." Nor does she like any of the other "isms" that come up in conversations about deafness. "I’m just a person who doesn’t hear as well as the next. Deaf Culture is misinformed about cochlear implants and about the rest of us deaf people—the majority—who just want to get along in the world. They call me a ‘hearing wannabe,’ but I don’t care. The implant has given me a world of opportunity." Pollack lost her hearing at 7. By 12, she had an implant in House’s trials. A journalism graduate of Carnegie Mellon University in Pittsburgh, she is an editor and copywriter in the Washington office of McGraw-Hill.

At Gallaudet, the intellectual center of American Deaf Culture, when the freshmen shave their heads as they ritually do every year, there are always one or two with old scars of implantation behind their ears. Those are, according to Jordan, the president, the only evidence he sees of implants at the university. As anyone at Gallaudet knows, a student with a device behind his or her ear runs the risk of being shunned. "I have some friends with implants," says Scott Mohan, a sixth-generation deaf senior at Gallaudet. "They just don’t use them anymore."

"You can understand why," says Keith Muller, executive director of the League of the Hard of Hearing in New York City. "Kids who try to speak in deaf schools are ridiculed. And the greater their oral success, the more they are criticized."

Gallaudet, which was founded by Congress, depends almost entirely on government funding. Jordan walks a tightrope when he speaks about the cochlear implant. On the one hand, the school’s annual endowment of more than $79 million is based on the premise that its students are disabled; on the other, the deaf pride movement that refuses to be called disabled is the group that swept him, a deaf man, to the helm of the institution.

"I’m a big-tent kind of guy," Jordan says. Deafened by a motorcycle accident at 19, he speaks clearly enough but needs a sign-language interpreter to understand speech. "People think I should use my bully pulpit to oppose implants in children, but I disagree. I don’t think that’s being wishy-washy. No one should assume they can make those kinds of decisions for anyone else."

Not until the generation implanted starting in 1990 begins to reach adulthood in 2006 will the true impact of the cochlear implant be known. Even so, implant manufacturers are rushing to develop new models. Ron West, CEO of Cochlear Corp.—by far the largest manufacturer of the implant—reports that next year, the company will unveil the Nucleus-24, a wireless unit worn entirely behind the ear. "We’re not in business to serve the Deaf Culture," says Cochlear’s audiologist, Doug House. "That’s not our constituency. Where the rubber meets the road is the hearing parent. That’s whom we serve."

Parents also are uppermost in the mind of Muller of the League of the Hard of Hearing. "If you are a member of Deaf Culture, there is absolutely nothing wrong in raising your deaf child to be a part of it," he says. "And if you are a hearing parent and want your child to participate in your world, that’s fine, too. Early diagnosis is crucial. Get your child fitted with hearing aids at 4 weeks and give them the best start they can get."

For someone who considers himself a product of the deaf revolution, Muller is quite supportive of implantation for children. "And why not?" he asks. "If I’m the parent of a deaf child and know there’s a device that can help him hear, aren’t I neglectful if I don’t equip him? . . . Let’s stop challenging the failure rates. Let’s look at the successes. What’s really working? And why?"