Will cochlear implants change deaf culture?

By Anita Manning, USA TODAY (May 2, 2000) – reprinted with permission

Deaf culture – the shared language, art and history of deaf people – has moved in a matter of decades from a period of isolation and repression to a time when the wider society has come to appreciate its beauty, richness and strength.

Now it faces a challenge that some people fear could make it obsolete: cochlear implants.

As more deaf children grow up with the high-tech hearing devices, there are those within the deaf community, and outside it, who wonder where the next generation of sign language poets and actors will come from. Who are the future leaders of the deaf community? And how big will that community be?

Jacob Maryo, 3, of Cincinnati, who is profoundly deaf, gets up every morning and turns on his cochlear implant. After six months with the device, his speech development is progressing rapidly, and he hears well enough to answer the phone and understand his dad, even over the roar of a vacuum cleaner.

When Jacob’s parents learned he was deaf, just before his second birthday, they began using sign language with him. But now, says his father, Michael Maryo, "from an oral standpoint, he’s doing so well. We’ll use the sign language when he needs it, when he goes swimming, for instance. But for the most part, he’s going to be an oral child."

Hundreds of miles east, at Gallaudet University in Washington, D.C., Rory Osbrink, 22, of Tustin, Calif., prepares for class. A senior majoring in philosophy and deaf studies at the nation’s premier liberal arts college for the deaf, Osbrink has a cochlear implant, too, but he hasn’t turned it on in five years. His communication skills weren’t improving, he says, and he stopped using the implant. Now he relies primarily on American Sign Language (ASL).

Osbrink got his implant when he was 4. "My parents felt that the more options one has, the more successful one would become," he says. Now, ASL is his "main mode of communication," he says, but "English is another means, especially in my hearing family. . . . No one except for my eldest brother knows any sign language."

The two represent past and future of cochlear implants, a revolutionary technology that has brought sound to the deaf. They also may represent the past and future of deaf culture.

Cochlear implants combine internal and external components to transmit electrical signals to the auditory nerve. They are sent to the brain, where they are interpreted as sounds. The technology has improved dramatically in the past five years. And now, though recommended for children 18 months and older, implants are being given to babies as young as 12 months.

Like many parents of deaf children, Jacob’s father believes that "it’s the best decision we could have made for him. Giving him the implant is giving him choices."

But to some who value deaf culture, the technology poses the threat of extinction.

"We can conquer newborn deafness in America," says Jack Wheeler, CEO of the Deafness Research Foundation. "If we can test every baby born and organize the parents as a political force so every baby gets what it needs, regardless of how much money the parents have, then the 12,000 babies born deaf every year become 12,000 babies who self-identify as hearing kids."

That means "the number of kids in schools for the deaf is headed for sharp decline," Wheeler predicts. "Without big change, Gallaudet will go out of business."

That prospect has led some in the deaf community who take part in online discussions to characterize cochlear implants as "cultural genocide" and "child abuse." Deaf children, they believe, should be taught ASL and allowed to grow up within the deaf community.

"Deaf people have created a marvelous language that transforms a mere disability into something that can be worth celebrating," says Matthew Moore, publisher of Deaf Life magazine. "We don’t see ourselves in terms of ‘hearing impairment,’ but as communicators and creators and members of a community. Deaf people have traditionally felt this extraordinary kinship with each other, this sense of recognition, of fellowship. To some of us, being deaf is a gift, a cause for pride."

It follows, he says, that "deaf people, quite understandably, feel threatened by the implant in a way that they don’t feel threatened by other technological advances."

Gallaudet’s first deaf president, I. King Jordan, who was swept into his job 11 years ago on a the crest of the deaf-pride movement, thinks deaf culture will weather this latest storm of controversy.

"The whole thing’s overblown," he says. "Culture changes and people change and … it all happens together. I disagree with those who say if cochlear implants increase, that’s the end of deaf culture. There will be changes, but I don’t think they will be that profound."

Gallaudet has always had students and teachers with "residual hearing," he says. "They’ve been an important part of Gallaudet. They’re not singled out or separated. They’ve always been here. So now instead of hard-of-hearing people wearing hearing aids, we have hard-of-hearing people wearing cochlear implants. Some will not identify with deaf culture and use just speech and hearing; some will be very involved in the deaf community and deaf culture and will use speech and hearing and sign."

But Wheeler and others wonder whether it’s that simple.

"The deaf culture should not be left to face and handle this change alone," Wheeler says. "It’s a societal problem."

Wheeler believes Gallaudet should become a "world treasure and not just a national treasure."

Currently, the university is mandated by the Department of Education, which provides 73% of Gallaudet’s budget, to cap international enrollment at 15% of the student body. But Wheeler says it should open its doors to more deaf students from countries where the high price of cochlear implants – up to $50,000 each – makes them unavailable to many. "This is a culture, a living part of our country, and the process of how it changes and evolves should be done with forethought and planning and with money."

Part of the problem is the speed of change. "Cultural experiences evolve over decades," says surgeon John Niparko, director of otology and neurotology at Johns Hopkins University in Baltimore. "The pace of informational technology has not allowed time to do that."

Niparko, who has performed hundreds of cochlear implants, says some of his patients who lost their ability to hear over time tell him: "I’ve got nothing against deaf culture. I love going to a play in sign language, but I just want to hear. I loved listening to James Taylor, and I’d love to again."

Yet, Niparko says, many adults who became deaf as babies or toddlers remember being forced, sometimes brutally, to learn to speak as children. "They look at the implant as one more thing thrown at them by the hearing society to try to make young deaf kids speak and hear," he says.

In the face of growing numbers of people using implants – about 18,000 last year in the USA and Canada, up from 9,600 in 1995 – the tide is turning. Even at Gallaudet, the epicenter of deaf culture, there is a sense of the inevitable.

"Implants are here to stay," Jordan says. "Implant technology is improving; therefore, implantation will increase." Gallaudet’s job, he says, is to understand how "to help students who are implanted achieve to their maximum."

Jane Fernandes, vice president of Gallaudet’s Laurent Clerc National Deaf Education Center, which includes an elementary school and a high school, says that last year they had no students with implants. This year, "all of a sudden, almost like out of the blue, we have nine students with implants. We really project that number will grow exponentially . . . and we are preparing for that change."

Most implant users don’t automatically understand the sounds reaching their brains. People who lost their hearing at an early age have no memory of language, "so it requires a lot of auditory and speech training," Fernandes says. "There seems to be a myth out there that if you have an implant, then overnight you have hearing. I used to think that, but I have learned it’s really a lot of work It’s four, five years of hard, hard work, speech and auditory training that may or may not succeed."

Teachers at the Deaf Education Center either use sign language alone or speak as they sign, she says. "I never see people speaking only. But I can foresee that for training children with implants, we will have time every day that children with implants are in a group and they’re only talking, not signing."

Fernandes confesses she expected that some students, especially teenagers who worry about appearance and tend to want to follow the crowd, would stop using the implants when they got to the Gallaudet campus.

"I thought they would come here and think this is the deaf world and would not use it," she says. "But they’re here in the deaf world, and they are using it. It’s the same with hearing aids. People will use a hearing aid if it helps them, and other people, like me, they don’t use it because it doesn’t help them."

She compares the controversy over implants to resistance within the deaf culture years ago to hearing aids. "When I grew up, hearing aids were (considered) awful. You’d do anything not to have them," she says. "But now I see all over Gallaudet people have hearing aids. They have blue ear molds, polka-dot ear molds. Now it’s a fad. So maybe it will be the same kind of cultural process with implants."

Fernandes agrees that deaf children, implanted or not, should learn ASL. Though a cochlear implant "really does help a deaf child to hear," she says, "for 18 months they’re deaf. They don’t have an implant. That’s critical language-development time. The best way to give the child access to complete language is through ASL, because it’s visual. Families and schools should give the child access to that language and continue to use it to bridge to English after the implant."

But she smiles at the suggestion that a generation of implanted children could wipe out deaf culture.

"I think that’s here to stay, because it’s a human expression in language," she says. "ASL poetry, ASL drama, is another form of human expression and art that will not stop because of technology.

"Deaf people will decide how to use implants to help them as a tool, but implants are not going to take over us as a people. It’s not going to happen."