To hearing parents the question might seem simple: Given a deaf child, wouldn't any mother or father do what they could to help correct the condition? In fact many deaf parents would not, and the debate over cochlear implants has become the subject of a critically acclaimed documentary, Sound and Fury, which was featured at last January's Sundance Film Festival and which focuses on the Artinian family as they struggle to come to terms with themselves and the issue. To understand how the two sides can disagree so passionately, says the film's director, Josh Aronson, "you need to understand the relationship between the deaf world and the hearing world."
The Artinians have lived for years on the fault line where those cultures meet. Chris and Peter's parents, Peter, 59, a Glen Cove, N.Y., insurance agent, and his wife, Marianne, 59, an administrative assistant at a local school for the deaf, both have normal hearing, as does their son Jay, 23, though their daughter Jeanette Ronghi, 36, is deaf. The elder Peter and Marianne spared no expense or effort to make sure that Peter and Jeanette, who grew up in nearby Huntington, received the best education and training that was possible. "When I learned they were deaf, I didn't allow myself to crumble," says Marianne. "A job had to be done." Peter attended a school for the deaf on Long Island, then studied at Gallaudet, the college for the deaf in Washington, D.C., before transferring to the National Technical Institute for the Deaf in Rochester, N.Y. It was at NTID that Peter met Nita, who also came from a family with hearing parents and a deaf sibling.
After studying accounting and data processing, Peter eventually went to work at Salomon Smith Barney in New York City, where he manages the investment firm's inventory system. Meanwhile, Nita gave birth to the couple's three children—Heather, now 7, Timothy, 6, and Christopher, 2, known as C.J. Heather and Timothy were born deaf, and C.J. was born hard of hearing. (Only about 10 percent of couples where both parents are con-genitally deaf have children who are born deaf.) From the beginning Peter and Nita knew there was an option that might help their kids hear: the cochlear implant. The electronic device, about the size of a penny, is implanted behind the ear and attached to an electrode placed in the inner ear. A sound processor that can be worn on the belt converts sounds to an electronic signal that flows through the implant and stimulates the auditory nerve.
But when the question of having the procedure done for Heather came up in 1998, her parents—after some soul searching—decided against it. "It's not natural," says Nita through signing. "It interferes with the body. It's a piece of equipment, like a robot, that they put in your head." For those outside the deaf community, such reasoning may be difficult to fathom. But most deaf people, maintains Peter, do not consider themselves handicapped. Thanks to American Sign Language, he says, their lives are as rich and fulfilling as the lives of those who hear. What's more, if Heather had received the implant she would have required intensive speech therapy outside the home, which her parents believe would have distracted her from the rest of her education. And she would have required a regimen of hearing stimuli in the form of such things as music and conversation, which would have been difficult for her deaf parents to provide. The bottom line, says Peter, is "If you are already happy, why do it? If it ain't broke, don't fix it."
Those are arguments that ring true to many in the deaf community who have long resented what they considered pressure from some hearing experts to give up signing in favor of what they themselves consider less satisfactory forms of communication, often involving hearing aids and learning how to speak. "To understand what seems to be an irrational, even reprehensible, opposition to biotechnological progress," says Matthew Moore, the deaf editor and publisher of Deaf Life magazine, in an e-mail interview, "you need to understand something about deaf history, the attitudes of the oralists and the control they wielded over the lives and destinies of deaf people." Says Moore, deaf since birth: "I have no desire to get an implant. ASL is my first language and I don't consider myself limited or constrained by it."
All the same, Aronson's documentary vividly captures the difficult issues raised by Peter and Nita's rejection of the implants. In one poignant scene, Heather, then 4½, is asked if she would like to have the device. She responds in sign language that she would, so that she could hear "smoke detectors for a fire" and "a telephone, a saw cutting down a tree...cars beeping—Beep! Beep!" Peter now explains that her interest then was simply a matter of "curiosity" and that once he and Nita had explained that the procedure entails surgery, she no longer wanted it. In a more recent interview with PEOPLE, Heather is again asked if she wants the implants. At first she says slowly in sign language, "I don't want to talk about it." Then she shakes her head, fidgets and looks at her parents. Finally she says, "I don't want to have a cochlear implant." And yet she does like to wear a hearing aid, which enables her to detect loud sounds like alarms and screams.
Peter and Nita's stance outraged Chris, who manages a steak house in Stamford, Conn., and in the documentary he angrily accuses them of "child abuse." To this day his mother, Marianne, is equally incredulous. "I think Peter feels he's going to lose his identity and his children will lose theirs," she says. To her relief, when Chris and Mari had a son, Peter, now 2, who was born deaf, they knew almost immediately that they would get the implants. (Chris and Mari have four other children, Emily, 6, Peter's twin brother, Christopher, and another set of twins, Joseph and Nicholas, 5 months, all of whom have normal hearing.) "My mind was made up," says Mari. "That's what I wanted for our son."
Ironically she and Chris faced strong criticism from her parents, Nancy and Michael Marcini, both of whom are deaf and who were convinced that they would be losing a precious connection with their grandson if his hearing was restored. "When they learned Peter was deaf, they were happy—very happy," says Mari, who met her husband at a school for the deaf, where they both worked. "They were hugging and kissing each other. For them, here was a grandson just like them." Little Peter had the implants anyway, just over a year ago. They worked, with the result that Peter can hear and speak like any other child his age. "Before the implant, he was profoundly deaf," says Chris. "[Now] he can hear the leaves rustling outside."
Last year Peter and Nita moved with their three kids from Long Island to Frederick, Md., which has become a mecca of sorts for the deaf. Drawn in part by the city's highly regarded Maryland School for the Deaf, hundreds of deaf people now live in Frederick, where the local Borders book store even has a weekly story night in the summer for children at which stories are told in sign language. Despite the fact that Peter must now spend each week in New York away from home while awaiting a transfer to the Maryland area, he and Nita say they are thrilled to be in such a deaf-friendly environment. "There is a large, strong deaf community here," says Peter in an excited flourish of signing. "Here the real estate agencies provide interpreters automatically."
The couple have no regrets about rejecting the cochlear implants for their kids, though the toll that the debate has taken on the family still pains them. "I don't want to argue forever about this," says Peter. He and Nita insist that in many ways they could not be happier than they are now, that what to others might seem a world of terrible isolation is in fact a world of contentment, with its own vibrant language and culture. Asked if they would want their hearing restored by magic, even without an implant, they both emphatically say no. "I don't want it," says Nita. "Honestly, I'd prefer to remain at peace."
Susan Gray Gose in Frederick and Matt Birkbeck in Glen Cove
- Susan Gray Gose,
- Matt Birkbeck.
Growing up, Peter Artinian and his younger brother Chris had no trouble understanding each other, despite the fact that Peter was born deaf and Chris had normal hearing. "Deafness was never an issue," says Chris. "I learned to sign when I was learning how to speak." But these days the lines of communication are not so clear—not since Peter and his wife, Nita, both 37, decided against having their deaf children receive cochlear implants, which could have given them a measure of hearing, while Chris, 31, and his wife, Mari, 32, chose the procedure for their deaf son Peter. "Before the implant issue came up, we were a very close family," Peter says sadly in sign language at his home in Frederick, Md. "After that, it hasn't been quite the same."