Sound & Fury : The new technology that could bring hearing to the deaf is meeting passionate resistance--from those who fear losing a treasured subculture

A BLUE-EYED CHILD WITH SOFT BROWN HAIR, 5-YEAR-old Morgan Fleischman sits in a New York hospital examining room that is decorated with children’s drawings and littered with toys. He tilts his head toward a computer that is sending sounds along a wire through a hole in his skull to a tiny device implanted in his inner ear. Morgan’s face is calmly serious, the face of a boy at work. With each beep he hears, he puts a penny in a bank. His mother smiles.

As one audiologist finishes using the computer to adjust Morgan’s high-tech hearing aid--called a cochlear implant--another begins to test the boy’s ability to hear and repeat speech. With the implant, Morgan, who has been deaf since he was 16 months old, is learning to talk. The audiologist says a series of words. Morgan is asked to repeat each one.

“Boat.” “Boat.”

“Shoes.” “Shoes.”

“Kiss.” “Chess.”

“Food.” “Foon.”

“Ship.” “Shit.”

The test ends with the adults stifling their laughter. The boy turns to the toys, building a ship out of snap-together blocks. He tunes out the grown-ups. The audiologist explains that with intensive training, Morgan’s speech should improve steadily. His mother, Denise Fleischman, considers her son’s speech to be more than satisfactory. With the implant, he is able to hear and speak well enough to play with other children and communicate some with his family. “It’s a miracle,” she says. With the implant Morgan can actually hear music, cartoons on TV, his mother’s voice. “I was worried before,” she explains, “but I know now that he doesn’t have to be isolated in the world.”

That deafness equals isolation seems as self-evident to much of the hearing world as Fleischman’s joy for her son. Yet for many in the deaf community, the suggestion smacks of ignorance, even insult. Kim Arrigo, a deaf mother and teacher of the deaf in Trenton, N.J., celebrated when her son and daughter were born deaf. Rather than being isolated, she says, her children are benefiting from the support of a close-knit community in a subculture rich with language and history. “When you ask deaf people if they could hear, would they go into the hearing world?” she says, “many would say, ‘No, I’ll stay right here with my deaf friends.’ ”

Such allegiance suggests why many deaf people are rejecting the medical miracle that Denise Fleischman believes will liberate her son. A majority of deaf adults are refusing implants for themselves and demanding that surgeons stop putting them into children’s heads. They don’t want this miracle, because they don’t consider themselves handicapped and in need of repair. Instead, they say, deaf people have a distinct culture, like gays, Jews or Chinese-Americans. They want respect and equal rights. They don’t want to be fixed, and they reject the notion that deaf children must be fixed at any price.

“I force people to look at my soul, not my ears,” says James E. Tucker, superintendent of the Maryland School for the Deaf and a widely known advocate for the rights of deaf individuals. Tucker opposes the use of implants on children and stresses that the technology is still primitive. He also thinks that deafness is widely misunderstood. “Deafness is not an affliction, because the deaf community here, there and everywhere is a vibrant community,” he adds. “And the implant technology is at the Wright brothers stage. Would you want to fly to Paris in a Wright brothers’ plane?”

Tucker’s comments reflect an awakening of assertiveness that has occurred in deaf society during the past decade. More than half a million people have no usable hearing, and another 20 million have hearing deficiencies. But growing numbers of deaf people now identify themselves as Deaf with a capital D, signifying their pride in sign language and solidarity with other deaf people. It’s a pride that may be unique among people with handicaps because deafness is the only disability that has allowed the development of a distinct language. These people rejoice at the birth of a deaf child and fight to preserve residential schools and other deaf institutions. They argue that sign language is equal to other languages and challenge those who see deafness as a medical condition.

Cochlear implants, now becoming widely used in children (more than 1,700 have the device), have become the focus of a ferocious debate over the ethical use of medical technology and the identity of deaf children. The battle is being waged by those who are proudly deaf against those who want to cure them. The deaf advocates say that implants, intensive speech therapy and even mainstream education are often threats to the well-being of deaf children.

The 20,000-member, Maryland-based National Association of the Deaf has condemned the use of implants on children as “highly experimental . . . ethically offensive . . . invasive surgery on defenseless children.” In his recent book “The Mask of Benevolence,” deaf culture expert Harlan Lane darkly warns that implants may one day be forced on children as a government exercise in “bio-power.” Lane, a psychology professor at Northeastern University in Boston, compares the use of implants to an operation that would make black children into Caucasians. “Even if we could,” he writes, “we should not.”

On the other side of the issue are hearing parents and medical experts who say they are fighting overzealous activists who wield their own brand of political correctness like a sledgehammer. “They are trying to stop progress and may do harm to children,” says Dr. Noel Cohen, the surgeon who put the implant in Morgan Fleischman. “But these are not their children.”

The rhetoric in this argument is heated because the stakes are high. Thousands of children are potential implant recipients. Depending on which view one accepts, they could be cured or maimed. Parents who can hear resent deaf advocates who try to influence their decision. The advocates fear that children with implants are being thrown into a lonely limbo.

“Will ‘hearies’ accept the child?” Arrigo asks. “Will ‘deafies’ look at the child and say: ‘Gosh, he or she thinks we are not good enough?’ ” Arrigo, whose children are 2 and 4, has rejected implants because “they are not an instant cure” and “we are just fine the way we are.”

Because 90% of deaf children come from hearing families, a great many of their parents may never meet those in the deaf community who see deafness as a difference, not a disability. So the division between the camps remains deep. The Maryland School’s Tucker goes so far as to say that hearing parents who know little about deaf culture should not make decisions about implants for their children. “No child should be used like this,” he says, “as a guinea pig.”

But for a growing number of proudly deaf Americans, the benefits of life in the deaf community largely compensate for the cost of not hearing. While promising a dramatic medical breakthrough, cochlear implants pose a threat to the future of the deaf community, a future that Tucker and others treasure. While few activists openly voice the fear that their minority culture faces technological extinction, some admit that they are distressed by the idea that devices that now seem like the stuff of science fiction may eventually turn sign language, deaf schools, deaf clubs--all of deaf culture--into historical relics.

IT WOULD BE EASIER TO ACCEPT THE ARGUMENTS MADE BY DEAF OPPONENTS of implants if it weren’t for children like 8-year-old Caitlin Parton of New York City. Caitlin recently showed off her remarkable success with an implant on the TV program “60 Minutes.” She chatted amiably and whizzed through a speech and hearing test conducted by one of the show’s reporters, Ed Bradley. Caitlin’s performance sent shock waves through families with deaf children. Organizations that serve the deaf community were flooded with requests for information about the device.

“The point is, the device works,” says Caitlin’s father, Steven Parton. He says those who say no children should ever receive the implant have a “loopy” view of the device. Implants, he adds, “are like a miracle of biblical proportions. The deaf can hear.”

But Caitlin reminds James Tucker of his own childhood, when he dutifully performed for adults who wanted him to speak. He could form some words and sometimes read lips. “I was Caitlin myself. I remember well performing for audiences.” While he watched Caitlin on “60 Minutes,” Tucker recalls, he thought of the emotional distress experienced by deaf children who know their ability to talk is quite limited. He turned to his wife and signed: “She could commit suicide at age 18.”

Others say that the TV program was misleading. It “led people to believe that the implants are better than they really are,” says Jeffrey Cohen, president of the American Society for Deaf Children, which represents 20,000 families across the nation. Caitlin had some advantages over other deaf children. Caitlin is obviously an exceptionally bright child. She also became deaf at the age of 22 months, after she’d had considerable amounts of speech and, most likely, had herself begun to talk. That gave her a distinct advantage over those children who are pre-lingually deaf--born deaf or becoming deaf before they could talk--and least likely to ever speak.

Children in the latter group face an arduous post-implant regimen of speech therapy that may or may not work. While some children will eventually hear and speak, others may get minimal benefits, such as the ability to hear a siren or someone calling their name, says Dr. Richard Tyler, an implant expert at the University of Iowa medical school. Because the benefits cannot be predicted, deaf activists believe that no pre-lingually deaf children should get the operation.

The distinction between the pre-lingually and post-lingually deaf has always been one of the keys to understanding deafness. Without hearing, a pre-lingually deaf baby cannot learn a spoken language. And without language, a child struggles to create relationships or even conceptualize his own desires. Language organizes feelings and thought and enables human beings to develop an inner life. The sheer isolation associated with deafness and the absence of language has led many--including the late author and educator Helen Keller, who was blind and deaf from birth--to conclude that it is far worse even than blindness.

But deaf children need not be denied language. Nearly all deaf parents use sign language and teach it to their children. Like a hearing mother who sings lullabies to her babies, Kim Arrigo began signing to her children from the moment they were born. Both her son Justin and her daughter Jo Hanna began to talk, with signs, when they were 9 months old. A deaf child who gets an implant and is not taught sign language might need years of training before reaching the level of communication he or she might have with signs. Arrigo sees this as an unnecessary tragedy.

“Every day when I turned on the lights for my son Justin I signed ‘light’ to him,” she explains. “We played with lights. Light was his first word.” Jo Hanna picked up sign language even more readily because she could learn from her brother. “He loved grapes and used that sign with her a lot,” Arrigo recalls. Jo Hanna’s first sign was “grape.” Now the two children are so fluent that when they see their mother tell someone she’s headed for the bank, they immediately begin asking for the lollipops the tellers hand out.

Deaf parents have transmitted sign language to their children for centuries. But it was not until the mid-1960s that linguists recognized sign as a real language, equal to others. Historian John Van Cleve of Gallaudet University in Washington traces the beginning of deaf pride to the moment when sign language gained legitimacy. Until then, sign had been regarded as a lower form of communication, and oralism, a system intended to teach deaf children to read lips and talk, was widely popular. Oralism was so powerful that even as late as 1960, the teacher-education program at Gallaudet refused to admit students who could not talk.

Unfortunately oral education was usually a failure for the pre-lingually deaf, Van Cleve adds. “Only those with residual hearing, who were brilliant or had learned some speech before becoming deaf, succeeded.” The majority of pre-lingually deaf students couldn’t master speech or lip-reading despite long, daily lessons. Consequently, they missed most of what was taught in the classroom and, upon leaving school, entered a kind of underclass of the deaf.

All this began to change with the recognition of sign language. In the ‘60s and ‘70s, schools gradually adopted the use of sign. Students were able to understand more of what occurred on in the classroom. The civil rights movement and the growth of a large disabilities rights movement also contributed to a changing consciousness among the deaf. Finally, in 1988, students at Gallaudet University, the premier deaf institution in the world, seized control of the campus and demanded the appointment of the school’s first deaf president. The protest was publicized worldwide and ended in a victory for the students and the deaf-pride movement.

“People who are culturally deaf would not choose to give up their deafness even if it were possible,” Van Cleve says. “This conflicts with the medical community, which says there is something wrong with you and we are going to plug these little wires into deaf children so that they don’t grow up to be like you.”

It is no small irony that a virtual renaissance of deaf culture is taking place now, just as medical science seems poised to offer the first high-tech advances that might eliminate deafness altogether. Implants are expected to be improved year by year. And researchers are looking into biochemical ways to repair the essential cells that fail to work in the deaf.

Yet, deaf history is full of premature claims of a cure as well as persecution and prejudice. Before the 1700s, it was assumed that the deaf were, in the main, something less than human. Deaf adults were historically consigned to menial labor and lived in squalid conditions, while deaf children were not educated. Social conditions and education for the deaf improved in the 19th Century, but doctors, patent medicines, faith healing and surgery were vigorously promoted as cures. One commonly used operation required the cutting of muscles in order to “loosen” the tongue. Another supposed remedy, which became popular in the 1920s, involved taking a deaf person for a nerve-racking airplane ride so that the changes in air pressure would somehow clear the ears. A number of deaf people were killed when airplanes crashed. None were cured.

Almost every member of the deaf community has had firsthand experience with oralism or the mirage of a medical miracle. These experiences contrast with the more positive image of deafness that has evolved in the past two decades. Northeastern’s Lane says outsiders rarely understand “that today deaf people don’t think there’s anything wrong with them. This is not well understood by the surgeons, and audiologists have gotten carried away with implants.” Lane, who is the psychological consultant for an implant research team at the Massachusetts Eye and Ear Infirmary, which works only with adult patients, consults with families, patients and implant doctors and helps them all decide who should have the operation and who should not. Though he may sometimes have doubts about the decision to use the implant technique with a particular patient, Lane says that the Boston-based team is highly selective, and that he has never had a serious conflict with his colleagues over a specific case. At best, he says, only 20% of post-lingual adult implant recipients get a dramatic benefit from the device, such as being able to talk on the telephone.

UNTIL THE DEVELOPMENT of the cochlear implant, the best that doctors could offer patients--hearing aids, speech therapy and other training--provided little help to many of those who were profoundly deaf. When the first multiple-channel implants came into experimental use about a decade ago, Dr. Noel Cohen, who put the implant into Morgan Fleischman’s head, began to see a brighter future for even the most profoundly deaf. While the old single-channel implants were designed to bring in a range of sounds along one electrode, multiple-channel devices employed separate electrodes to deliver different kinds of sounds. The advanced implants made by the Cochlear Corp. of Englewood, Colo., cost about $15,000 each. Additional medical expenses and post-operative training can cost $15,000 or more per patient. “In the future, the potential recipients include every deaf person,” Cohen says.

A bespectacled man with wispy, graying hair, the 63-year-old Cohen becomes animated as he talks about the new technology and the relatively complex microsurgery. In his office at Bellevue, he points to drawings of the skull to indicate the spot behind the ear where the skin is cut and a hole is drilled through the bone. He traces a pencil along the route the surgeon follows to gently insert the wire-thin electrodes into the cochlea. A tiny transmitter is sutured to the skull, and the skin is sewn over it. The patient then connects the transmitter to a wire that runs to a computer the size of a cigarette box that can be carried in a pocket or clipped to clothing.

Although the machine translates sound into electrical impulse, it is the brain that must make sense out of these impulses. This happens most easily for adults who grew up hearing. They have memories of sound, and they have expectations about sounds. Some late-deafened people have even reported “hearing” phantom sounds such as leaves rustling when the wind blows, or waves breaking on the shore. Doctors have assumed that the brains of these people produced these “sounds” in response to what they were seeing. Such adults adapt readily to the implant and find it relatively easy to turn the sounds transmitted by the implant into the very same sounds--car doors slamming, voices, telephones ringing--they remember.

Young children are a second group that may do well with implants, says Cohen. That is because their brains are still developing and may, literally, grow the neurological ability to interpret the transmitter’s signals. “If the child is implanted before age 3, they do very well,” Cohen says. “This is because of the plasticity of the entire nervous system at this age.” With an implant, “you switch the development of the auditory nervous system on. After age 10 or 11, those who lost their hearing very early don’t do as well. But they would know when a truck is coming or when the phone is ringing,” Cohen adds. “This could be tremendously important, if only for safety.”

As the technology is improved, the implant success rate could soar. “Thirty years ago, if someone had told me this was possible, I would have had them committed to Bellevue,” he says with a laugh. “Now I think it’s quite possible.” Cohen has no doubts about the nature of deafness. “It is definitely a disability,” he says. “It’s a handicap. There’s no way around that.”

Cohen believes it may be the prospect of an end of deafness that frightens the opponents of implants. “Every child we implant is one less child who may join the deaf culture. That really bothers some people.”

It doesn’t bother the parents who desperately want their deaf children to speak and hear. Those parents welcome any advance that might give their children better access to the hearing world. Many also resent the deaf-pride activists who oppose implants and insist that deaf children are, from the moment they are identified as deaf, the concern of the deaf community.

“There is an attempt to force people to accept a kind of political correctness about being deaf,” says Susan Coffman, director of professional programs at the Alexander Graham Bell Assn. for the deaf in Washington. “We call deafness a disability, and we support the efforts parents make, often at great sacrifice, to help their children. These criticisms really hurt them.”

Some in the deaf community agree that the deaf-pride movement has produced its own rules for determining who is Deaf with a capital D and who is simply deaf. In some circles, it is not deaf to wear an implant or a hearing aid or to speak. Some believe that the children of deaf parents have a special claim to deafness. Likewise, students from residential deaf high schools may believe that they have a stronger claim to deaf culture than those from mainstream schools. These attitudes are sometimes on display at places like Gallaudet. There, the stridently deaf may look down on those who do not use sign language well. Some students at the university say they may feel pressured to reject friends who can hear, as well as their families, in order to gain acceptance among the deaf. Or they may remove their hearing aids and simply stop trying to talk, even though they can.

“People who identify themselves as Deaf with a capital D sometimes do come at you with an attitude,” says Darby Leigh, a 20-year-old junior at Gallaudet. Leigh wears hearing aids, reads lips and knows how to talk. A native New Yorker, Leigh wears spiked bracelets, and one of his eyebrows is pierced. But he bows to convention on campus, choosing not to speak and using instead the more accepted form of communications--sign. “If I talked,” he says, “I would be ostracized.”

Young deaf adults like Leigh feel torn between the warmth and acceptance of the deaf community and their desire to exist in a bigger world. “I grew up feeling I didn’t quite belong in the hearing world, so I wanted to try my world with my people,” Leigh says. “If I get rejected here, I’ll be in an impossible position. I’ll fit in no world.”

Many hearing parents who fear that their children will not find a secure place in the world, depend on organizations like the Alexander Graham Bell Assn. to help them find oral education programs and technologies that would improve hearing. The Bell group was founded for that purpose and was a major force behind the oralism trend. The new battle over implants can be seen as an extension of the historical fight between the philosophical descendants of Bell, who sought to “repair” deafness, and descendants of Thomas Gallaudet, the university’s founder, who value sign language and consider deafness a natural difference.

“People supporting these two different philosophies have argued for years. But things had quieted down until the implants and deaf pride came along,” explains the Bell group’s Coffman. Many hearing parents, who belong to the Bell group, have embraced the implant and more or less ignored the deaf-pride movement. “These parents know that these are their children and they are responsible for making the decisions. They have two choices. Accept it and not try to go through speech and hearing training, or they can treat it as something they can make better. Parents have a hard-enough time making these choices. They don’t need someone telling them they are wrong.” The National Association for the Deaf and others “are telling these people they are bad parents. That’s wrong.”

In Little Rock, Ark., Lynn Coates, the hearing mother of a 17-year-old deaf daughter, doesn’t appreciate the criticisms from the deaf-culture movement. A former stockbroker, she took on the task of teaching her daughter to speak as a full-time vocation. Daily visits to speech therapists were followed with continual training at home. “I did it because I wanted her to have the choice of living in the regular world and communicating with everyone,” she says. “And I wanted her to be part of my family, not sent off to some school to then join the deaf community.”

Like many hearing parents, Coates believes that there are no easy options for a deaf child. The use of hearing aids, implants, speech therapy and lip-reading require extensive, even excruciating effort, and the results are not guaranteed. Signing and a life spent mainly in the deaf community are viewed by these parents as a kind of exile. Faced with such choices, parents have to select one option and live with it. “You can’t be on both sides of the fence,” Coates says. “You have to make a decision and go for it no matter what the criticisms may be.”

As a speech pathologist, the Bell group’s Coffman argues that once a choice is made to use an implant, sign language can be counterproductive. But she admits that babies whose parents choose the implant approach may lose years of communication.

“The oral approach is not for every child,” she allows, adding that it can take one or two years to discover which children cannot learn to talk. During that time, much communication is lost. Still, she encourages parents to help their children speak, rather than sign, if it is at all possible.” No matter what the choice may be, she says, “there is no way to educate a deaf child without a lot of difficulty.”

BARBARA RAIMONDO SAYS SHE HAS not found it terribly difficult to educate her deaf daughter, Meira. Soon after she discovered that Meira was deaf--she was 10 months old at the time--Raimondo sought out deaf adults for advice. They suggested that she learn sign language and use it in addition to her voice to communicate with Meira. That technique--called total communication--has become widely popular among educators of the deaf over the past two decades.

Now 4 years old, Meira can speak some, and she communicates with her mother with remarkable ease, reporting her daily activities or making her preferences about food, clothes or playmates perfectly clear--all in sign. On a recent morning, the curly-haired little girl met her mother at the Kendall Demonstration Elementary School on the Gallaudet campus, where she attends preschool. As she clambered over and around a playhouse setup in the lobby, she casually signed answers to her mother’s questions. Yes, she liked her big blue sweater with the cat on the front. Her great-grandmother made it, she signed. When it was time to say goodby, she did so in both sign and spoken English.

Meira’s mother says that the easy communication she enjoys with her daughter would not have been possible if she had not decided to learn sign language herself.

“When we went to the audiologist and found out she was deaf, I realized that the person that would have to change was me,” Raimondo says. “She wasn’t upset when we came home from the audiologist. I was.” Raimondo decided that sign language gave her daughter the best chance to relate to her family and others. She also thought Meira would get a better education if she attended schools where lessons are given in both sign and in English.

The education of deaf children is perhaps the most important concern of those who oppose implants and promote deaf pride. Repeated studies and surveys have found that deaf students lag far behind others in academic achievement. (The typical deaf high school graduate, whether from mainstream classes or deaf institutions, reads at a fifth-grade level.) Deaf-culture advocates, noting that children taught in sign language score higher on academic tests, blame oral-style education for low achievement. They say that many students miss valuable school time struggling through speech therapy sessions and miss much of what is transmitted by speaking teachers who do not sign.

Stories of educational failure and frustration are practically universal among non-speaking deaf people. In his studies of the deaf, psychologist Allen E. Sussman has found elevated rates of low self-esteem, which he traces, in part, to feelings of frustration associated with forced oral education. Too much is lost, Sussman says, when deaf children are required to cope in schools that do not use sign. “The hearing parents and the schools try to make them like hearing children. But you cannot make a silk purse out of a sow’s ear,” Sussman adds. “If you are deaf, you will never be a hearing person.”

The same is true with most children who get implants, says Jeffrey Cohen of the American Society for Deaf Children. “Claims about implants have been overstated, and thousands of families are going to be disappointed to realize that their children are not going to become like normal hearing kids.” Children with implants “are still going to be deaf children,” Cohen says, “and most will still benefit from sign language.”

Some children have already been deeply affected as a result of their implants’ failure to bring hearing. Darci Wemken, an 18-year-old Gallaudet freshman from Fremont, Calif., says she had her implant removed after years of trying to make sense out of the sounds it produced. “I thought a dog barking was the phone, and I thought the phone was someone honking a car horn,” she explains. Educated in deaf schools and happily nestled in the deaf culture, Wemken found the implant experience painful and disappointing. “I was naive when they asked me if I wanted it,” she recalls. “I said OK. What did I know?”

Knowing that some implant patients end up like Wemken, Cohen and his wife, Cheryl, decided against an implant for their 10-year-old daughter, Marissa. Instead the Cohens learned sign language in order to teach it to their daughter, and the entire family now uses it at home. Like young Meira Raimondo, Marissa attends a “bilingual” school for the deaf where her classes are taught in both sign and English. While Cohen reports that his daughter thrives in a deaf school, he says she would be lost in a regular classroom. Many people might assume that deaf children are best served in regular schools, Cohen says, but that is a popular misconception. He says that many deaf children are socially isolated and educationally neglected in mainstream schools.”

As a parent and a nationally known advocate for the deaf, Cohen takes a middle-of-the-road position on implants and the importance of deaf culture. A small number of children get substantial benefits from implants, he says. Their parents should have the option of choosing the operation. “But most are not going to do exceptionally well, and they will still need to communicate.” That is where deaf culture can help. Children with implants, even those who can speak a little, can still benefit from sign language and contact with successful deaf adults. “You have to do both,” he says. “You have to accept the deafness and deal with the child.”

The middle-ground position Cohen advocates may help some parents make the decisions that will give their deaf children the best opportunity to grow into healthy, happy, successful adults. Some will reject the implant. Others will take the chance. The choice may get easier if, as everyone involved in the controversy expects, medical technology improves enough to give substantial help to more children.

But the Maryland School’s James Tucker has heard reports of miracles and wonders before and is not ready to believe in the implant. He insists that deaf society has not reached the moment of its decline. Until then, he will continue to question the doctors’ claims and the parents’ choices. And he predicts that an entire generation of children with implants will one day seek out deaf society to be of help.

“We may lose the battle with our young deaf children,” Tucker says, “but we will win the war, because a child with an implant eventually grows into a deaf adult and becomes part of the deaf community. So often damage has been done, and the deaf community welcomes the maimed person and we heal that person. We win, every time.”