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The sound of science

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[Times photo: Ken Helle]
Six-year-old Louie Alvarez, right, who was born deaf, has had a cochlear implant since just before her second birthday. Auditory-verbal therapy twice a week helps improve her skills. Here, therapist Tina LeVasseur covers her mouth so that Louie can’t read her lips during a session.

By JEANNE MALMGREN

© St. Petersburg Times, published April 26, 2001


For some deaf people, recent technology offers a chance to have almost normal hearing. That's exactly why others consider it a threat.

TAMPA -- "I really am happy being deaf," the man on the screen says in sign language, his hands soaring and swooping like a pair of birds. "If somebody gave me a pill that would make me hearing, would I take it? No way!"

Peter Artinian was born deaf. So were his wife and three children. In the opening scenes of the new film Sound and Fury, he articulately expresses a kind of pride many deaf people feel. They say they have their own language, their own culture, and they're not eager to be assimilated into the hearing world.

And some feel threatened by the advent of cochlear implants, electronic devices that can help profoundly deaf people hear.

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[Photos: Next Wave Films]
In Sound and Fury, an Oscar-nominated documentary about the communication wars of the deaf, Peter Artinian tells in animated sign language why he’s opposed to the new technology. “I’m afraid that cochlear implants are going to create a bunch of robots,” he says.
It's a subject of great controversy in the deaf community, tackled head-on in Sound and Fury. Released last fall and nominated for an Academy Award for best documentary feature, the film will be shown tonight at Tampa Theatre.

At the film's heart is Artinian, who works with computers on Wall Street and is a member of a Long Island family torn by the debate over cochlear implants.

His brother Chris has normal hearing. So does Chris' wife, Mari. Even so, both grew up around deaf culture, Chris because his brother is deaf, Mari because her parents are deaf.

When one of the couple's twin infant sons is diagnosed as deaf, Mari weeps while a doctor plays a taped simulation of the garbled white noise her boy "hears." The couple decide he should have a cochlear implant.

Meanwhile, Peter Artinian's oldest daughter, Heather, 5, tells her parents that she wants an implant like her baby cousin's.

"I have hearing friends," the child says in sign language. "I want to talk to them. I want to hear sounds."

The rest of the film shows the family's emotional arguments: father versus son, sister versus sister-in-law, daughter versus parents, brother versus brother, hearing versus non-hearing. It's an encapsulated version of the debate that has raged since cochlear implants were introduced several years ago.

"Many people who are a part of the deaf community are opposed to the implants," said Kelli Farnsworth, sign language interpreter and instructor in the University of South Florida's bachelor's degree program in interpreting.

Farnsworth, who is not deaf, said many non-hearing people tell her they are offended that the medical world views their condition as something to be fixed. They don't like "doctors (who) have a pathological rather than cultural view of deafness," she said.

Besides, she said, the devices don't always work well.

"I have friends who have cochlear implants, and they've unplugged them. They don't want the noise all the time. It's not actual hearing like you and I have. It's very tinny-sounding."

Keith Dumphy, a 40-year-old engineer from New Port Richey, is the face of the other side of the argument. Three years ago, he had cochlear implant surgery after genetic nerve deafness slowly robbed him of his hearing.

"I felt like I had a miracle given to me," Dumphy said. "I got my privacy back. I didn't have to rely on someone else to help me communicate anymore."

During the two years he was totally deaf, Dumphy didn't learn sign language or lip-reading. He wrote notes on a pad or a laptop computer. Now, thanks to his cochlear implant, his hearing is 90 percent normal. His speech sounds like a hearing person's speech. He is president of the Tampa Bay Suncoast chapter of the Cochlear Implant Association, a support group for people who have received the device.

"If there's technology out there that has a good chance of helping you, I'd rather be a part of the hearing world," he said.

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[Times photo: Ken Helle]
Louie Alvarez, whose cochlear implant is behind her right ear, hides her eyes while playing a learning game with her therapist and her mother. The 6-year-old now hears within a normal range and speaks clearly.
Because he lost his hearing later in life, after he had already experienced normal hearing and speaking, Dumphy was an ideal candidate for a cochlear implant. Very young deaf children, who get the implants while the brain's neural pathways are still developing, also tend to do well with the device.

Six-year-old Louie Alvarez of St. Pete Beach was born deaf. Her parents, who have normal hearing, first gave her hearing aids and auditory therapy. Just before she turned 2, they took her to the University of Miami Ear Institute for the $40,000 surgery to put a cochlear implant behind her right ear.

Suzanne Alvarez said she wanted her daughter to have any medical help that could give her even partial hearing.

"I don't view deafness as a character trait, I view it as a medical problem. Because the world at large is geared toward hearing," she said. "We have ears. We were intended to hear."

Louie now hears within a normal range and speaks clearly. She has twice-weekly auditory-verbal therapy at the Bolesta Center in Tampa and speech therapy at All Children's Hospital in St. Petersburg. She generally doesn't mind the quarter-size brown coil that attaches to her head, behind her ear, with a magnet.

"I tell her, some people wear glasses to see. And you wear this to hear," her mother said.

Most implants, such as the one Dumphy uses, have an electronic processor that must be worn in a belt pack attached by a cord under the user's shirt. Louie's implant is a newer model, totally self-contained.

"She is the happiest, most cheerful, delightful girl," her mother said. "She sings the entire way to school in the car with her father. And obviously she wouldn't be singing if she couldn't hear."

There's no doubt cochlear implants can be life-changing for some deaf people, said Terry Chisolm, a Tampa audiologist and director of USF's audiology program.

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[Times photo: Ken Helle]
Louie generally doesn’t mind the quarter-sized apparatus. “I tell her, some people wear glasses to see. And you wear this to hear,” her mother says.
"It's a miracle. Twenty years ago these children wouldn't even have the opportunity to learn verbal language."

Chisolm said that even though many deaf people remain adamantly opposed to cochlear implants, others are softening. Last summer, she was asked to speak about implants at a conference of a national deaf advocacy group. Gallaudet University, the well-known college for non-hearing students, has introduced special classes for those who have cochlear implants and don't rely solely on sign language.

Alvarez said she understands and respects the deaf community's pride in its identity but hopes it will at least entertain the idea of medical advances.

"I applaud them. When there was no other alternative, they created a strong, supportive culture," she said. "But technology has really changed the opportunities that are available."

Peter Artinian, in the last frames of Sound and Fury, voices his fear of that kind of technology.

"I'm afraid that cochlear implants are going to create a bunch of robots," he says. "Deaf people will become extinct. And my heart will be broken."

* * *

The next meeting of the Tampa Bay Suncoast chapter of the Cochlear Implant Association will be 11 a.m. to 2 p.m. May 5 in Room B-301 at Tampa General Hospital. For more information, call (727) 372-3817, e-mail kadnew@yahoo.com or visit http://groups.yahoo.com/group/tbay_ciai.

If you go

Sound and Fury, the Academy Award-nominated documentary, will have a one-time showing at 7:30 tonight at Tampa Theatre, 711 Franklin St. Admission is $6.25 for adults, $4 for seniors and students. A free wine-and-cheese reception will begin at 5:30 p.m. in the atrium of the TECO Plaza building across the street from the theater. For more information, call the theater at (813) 274-8982 or Bolesta Center at (813) 932-1184.

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