Sound and fury

Thousands of deaf kids can hear, and speak, thanks to a stunningly effective ear implant. So why is the deaf community in an uproar?

Published May 25, 2000 1:46AM (EDT)

Jacob Maryo, a deaf 3-year-old, runs to the window when he hears the trains rattle past his Cincinnati house. Six months after his cochlear implant, he can also hear music, and the phone ringing, and his dad speaking, even with the TV on. "Yep, he's fixed," Jacob's audiologist said during his last visit.

But when Jacob's dad, Mike Maryo, went online to share that happy experience with other deaf people, the response was surprising: They hated the implant, and they hated him.

The cochlear implant, introduced two decades ago but only now reliable enough for widespread use, is a surgically implanted device that transmits sound over a wire to the auditory nerves. More than 20,000 deaf Americans have gotten the implant, and the numbers are growing fast. The surgery is especially popular among the 90 percent of deaf children who have hearing parents -- parents who want to talk to their children, and want their children to talk to the greater world. Babies as young as 9 months old are getting cochlear implants. And this has created a deep fissure in the identity-conscious deaf community.

For many deaf people, the "fixing" of the deaf by the hearing is a form of baby-snatching. Their sense of betrayal is like the betrayal some African-Americans feel about white couples adopting black kids. For years, a deaf educational system and culture have grown up around the use of American Sign Language, and many deaf people see themselves as a "linguistic minority" rather than a disabled group. For this group, whose leading spokesman is the (non-deaf) writer Harlan Lane, a deaf child will always be deaf and should not be stripped of his or her cultural birthright by a misplaced effort at mainstreaming.

"Members of this cultural and linguistic minority have hearing parents who do not transmit and will not share the linguistic and cultural identity of their deaf children," Lane, a psychiatrist at Northeastern University, wrote in his 1992 book, "The Mask of Benevolence." "The children themselves are too young to refuse treatment or to dispute the infirmity model of their difference."

The implant resembles a hearing aid, with one wire carrying a set of electrodes deep into the cochlea, a snail-shaped part of the inner ear. Another wire is linked to a processor, worn on the child's belt like a Walkman, while a third wire is attached to a quarter-sized transmitter attached to the electrodes, through the skull, with a magnet. It looks like a bottlecap behind the child's ear.

At online deaf chat areas, deaf people describe the implants with dark references to genocide and eugenics -- in language that reflects their own distance from mainstream grammar. "Why do we want to have our kid's skull opened?" asks one deaf man. "People are treating kids like having the skull opened and shut which it is not the hood of a car!"

"Cochlear implants hurt deaf communities possible to destroy our deaf culture[sic]," writes another. "I don't understand why the doctors steal deaf children from their true identity." The implants are merely "another way for audists to keep control of the Deaf and Hard of Hearing clients. ... the cash register is ringing every time a Deaf person shows up at the hospital."

Mike Maryo's post about Jacob's miraculous progress met with bitterness and hostility. "Doesn't that sum up the awful attitude people have about hearing loss?" one opponent of implants wrote. "And goes to prove all along what Deaf people have been saying -- the cochlear implant is used as a tool to FIX deaf people. Happily for us, and sadly for others -- it doesn't!!!"

In other words, critics of cochlear implants are as leery of the success of the device as they are of its failure.

"They're afraid that if all the children get implants, you're going to wipe out deaf culture," says John McCelland, 47, a deeply hard of hearing man who received an implant five years ago and got immediate benefits.

For decades, the deaf community has been split into visual and oralist camps, though the lines are not hard and fast. Oralism, championed around the turn of the century by Alexander Graham Bell, emphasizes lip-reading and the vestigial hearing capacity of the deaf. Bell was also a eugenicist who urged the deaf not to intermarry so their "affliction" could be eliminated from the race.

More recently, deaf educators have stressed sign language as a means of nurturing an autonomous deaf community. In particular, Gallaudet University, which offers preschool-through-graduate school programs for the deaf at its Washington campus, is a signing oasis in a talking world.

But cochlear implants are starting to push the pendulum the other way. More than a dozen new oralist schools have started in the past three years to educate implanted kids. In January, officials from the implant center at Johns Hopkins University -- where 50 children will be implanted this year, compared to two in 1991 -- set up a demonstration preschool in Washington. It focuses on honing the communication skills of implanted children while they attend school alongside kids who hear normally.

"There's a long tradition of oral education for the deaf," says Nancy Mellon, the clinical coordinator at the Hopkins clinic as well as the new director of The River School, "but cochlear implants have made it more feasible to get a severely impaired to profoundly deaf person into typical society."

To be sure, the decision to implant is not an easy one, especially for the parents of a small child. Although the surgery is relatively safe -- no one has ever died and major complications are rare -- there can be infections, or the implant can fail and need to be reimplanted. Nausea can last for days after the operation, and the hyperstimulation of sound can be exhausting to a deaf child.

The effectiveness of the implants can also vary widely, depending on the brain and ear structures of the person and factors no one understands. And the device doesn't cure deafness. "It doesn't make you hear normally," says Peg Williams, director of the Cochlear Implant Association. "It's not an either/or situation."

That may not be a problem for an implanted adult, who can fall back on sign language. But implanted children whose education stresses sound rather than signing can end up stranded between two cultures if their implants leave them hard of hearing. They could be hobbled in the mainstream world their parents have chosen for them.

This is not trivial. There are many anecdotes of teenagers who stop using their devices because they are frustrated with the devices or feel awkward around their deaf peers. Proponents of the implants say many of these teens were implanted too late to gain the language benefits that babies and toddlers receive.

In 1981, when he was 4 years old, Rory Osbrink was the second person to get a modern cochlear implant. He turned his implant off 13 years later because it wasn't helping him with spoken English. A senior-year philosophy student at Gallaudet, he does much of his communicating in ASL. And he resents his parents' decision to implant him.

"I strongly believe that if one is to make a choice -- especially a life-altering choice -- it should be an educated one," Osbrink said in an e-mail. (As a group, the deaf benefit far more from e-mail than from cochlear implants.) "As for pediatric cochlear implant[s], it should not be tolerated since it ignores the child's right to choice."

The pivotal moment in deaf pride came in 1988, when 3,000 students at Gallaudet University marched through Washington and shut down their campus. The so-called Gallaudet Revolution resulted in the installment of I. King Jordan, the school's first deaf president. "The challenge presented by the Gallaudet Revolution," Harlan Lane wrote four years later, "is to stop thinking of culturally deaf people as hearing people who have lost their hearing and to start thinking of them as members of a linguistic minority."

Osbrink agrees that ASL is the mainstay of the deaf community. "Regardless if the cochlear implant invasion continues or not, the deaf community must preserve ASL," he writes. "Otherwise, a long-fought cause is lost."

But deaf culture's fears of the implant are diminishing, to an extent, as contact with the technology increases. Many leaders of the National Association of the Deaf have gotten implants, and the group is redrafting a position paper to make it more friendly to cochlear implants. Gallaudet has officially dropped its skepticism. John Christiansen, a sociologist there, says his survey of 25 parents of implantees found them largely satisfied with the device.

"Our position is that we support students with hearing loss of different types," says spokeswoman Sherry Duhon through a sign language interpreter. "The technology is changing and we have to adapt."

Out Duhon's window, she can watch student couples make sweet talk with their hands -- deaf culture is very nosy, she says. She has a unusually nuanced feel for it, for while she and her husband are deaf, they have two hearing sons.

Though the boys are college students in their 20s now, American Sign Language is still their mother tongue.They look people in the eye directly and touch them in conversation: characteristics of deaf discourse. One of the boys, Dean, coached Gallaudet's basketball team. When he played football in high school, his mother would give encouragement from the back row of the bleachers -- with her hands.

Duhon's best friend, Patsy, has decided to get an implant; while many of their friends thought it strange, Duhon wasn't surprised. For pragmatically minded deaf people, the implant is like a ticket for a round-the-world cruise, a trip to a faraway country that's exotic but not home. "Patsy loves music, she speaks well. She's that kind of a person -- she goes for it. And if it doesn't work out she'll move on."

Just this year, Gallaudet admitted nearly a dozen implant users to its preschool and high school, and has begun setting up a special program for them. "This time last year I would never have dreamed we'd be doing this on this campus," says Debra Nussbaum, an audiologist at the Gallaudet elementary school.

National changes in diagnosis of deafness could also increase the use of implants. Congress just passed a law requiring states to screen infants for hearing loss. "As more kids are identified at or near birth, the next step will be to send them to an implant center before they even get to education," Nussbaum says.

But there are risks. Says Nussbaum: "At that age families haven't yet solidified their feelings about how to communicate with their kids. I think some of the families won't learn to sign."

Even with a cochlear implant, it takes years of constant practice for a child to learn good English, Osbrink says. And sometimes it just isn't good enough to function in a complex hearing world.

"No voice (orally or manually)," writes Osbrink, "equals no existence."

But such concerns seem far away from The River School, which had 35 children -- eight who are deaf, 27 with normal hearing -- when it opened its doors in January. The parents of the hearing children were drawn by an extremely tight Washington preschool market and by The River School's lavish staff-to-pupil ratios -- better than one to four.

On a recent morning, Marie, a little girl with a loopy smile and pink roses on her dress, is opening her mouth for "mouth time" -- exercises in which the speech pathologists probe the different parts of the child's mouth with a toothbrush to show the link between sounds and the mouth's shape.

Marie, implanted at 16 months, seems to be entering the best of all possible deaf worlds, for she is growing up bilingual. She speaks in sign language with her father, a deaf nuclear engineer, at their Northern Virginia home. But when Marie speaks with her speech pathologist, Betty Schopmeyer, or with the other kids in her class, the language is spoken English. Schopmeyer says it's different than training a child with a hearing aid.

"I know that Marie's cochlear implant is giving her good access to sound at high levels," Schopmeyer says. "She hears 'f' and 's' and 'sh'" -- high-frequency sounds generally unavailable to hearing aid users. "She said 'fish' the other day and that was very exciting. She hears me from behind and from across the room. She hears the water go on across the room."

In another room, 22-month-old Mia, who is deaf, plays with her speech therapist and her twin sister, Isabelle, who is hearing. The school has two other deaf/hearing twin combinations. "This is a place where they can learn together," says Mellon, a developmental psychologist who is the school director.

Mellon's son, Will, got an implant six years ago, when he was 2. She quickly learned that surgery was only the first step in the implant process, which costs about $50,000 and is not always covered by insurance. The electrodes implanted in the cochlea must be acoustically aligned with the nerves, a process called mapping. Next come training sessions that last several months. Mellon saw the need for special programs for young cochlear implantees.

On a recent Monday morning, John McCelland and Anne-Marie Liss, both cochlear implantees in their 40s, shook their heads appreciatively as they toured the school.

"This is so great because the kids learn social skills," said Liss, as she watched Marie and 10 other kids sing songs in a circle with the teachers. "We deaf could be academically brilliant but because of deficient social interactions we were shut out of society." A high-pitched squeal from the children brings an appreciative smile to Liss' lips. "I'm so delighted. Now I can hear those high-frequency sounds!"

"Even if I accept that deaf culture is going to die out I'd still feel there's something of value we have to transmit to the next generation," Liss reflects. "But these kids have such an enormous head start. They may never have to go down the road we went down."

By Arthur Allen

Arthur Allen writes on health, science and other issues for Salon. He lives in Washington.

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