I Can Hear You Whisper (19 page)

In the “For Hearing People Only” column of the magazine
Deaf Life
, the editors wrote:

An implant is the ultimate invasion of the ear, the ultimate denial of deafness, the ultimate refusal to let deaf children be Deaf. Those who make the decision to implant children choose to risk the children's health so that they can hear more sounds and develop clearer speech. Children attending oral schools and mainstream programs are the most likely to be implanted. Their parents, the ones who choose to have their children implanted, are in effect saying, “I don't respect the Deaf community, and I certainly don't want my child to be part of it. I want him/her to be part of the hearing world, not the Deaf world.”

Deaf adults maintained that having lived without hearing themselves, they had something to offer deaf children that hearing parents could not. In the Deaf world, they said, deaf children could find a kinship that was at least as valuable as that of their biological families, if not more so. “Deaf people feel ownership of deaf children,” Heppner said. “I admit it; I feel it, too. I really struggle in not wanting to interfere with a parent's right to parent and at the same time dealing with my own feelings and knowing that they have to accept that the child can never be one hundred percent theirs.”

 • • • 

The message that hearing parents didn't know what was best for their own child did not resonate with the Partons. Neither did warnings of false hope and deep depression. Caitlin's mother and father wanted the rest of the world to hear about their experience. In November 1992, “Caitlin's Story” aired on
60 Minutes
.

Five years after her surgery, Caitlin was thriving. Her implant had indisputably delivered more than the sounds of barking dogs and honking horns. She was able to sit on the floor with Ed Bradley, who reported the segment, and carry on a meaningful spoken conversation about her cochlear implant with a total stranger.

“How does it work?” asked Bradley.

“The sound goes inside a tiny microphone around here,” Caitlin said, pointing to the hearing aid–like device sitting on her ear. “It goes down into the computer, which is in this box.” With her finger, she followed the cable that traveled from behind her ear to a purple zip case strapped to her waist. It contained the Walkman-size battery pack and speech processor, the external electronics where the speech signal was translated into an electrical code. As with all of the first generation of implants, Caitlin's processor and battery pack were bulky and had to be worn on the body. Then Caitlin's finger followed the wire from her waist back up to her ear and along a second wire, which connected the piece on her ear to a round plastic coil held to her head with a magnet. “Then it goes back up again here and then it goes into my brain.”

“What happens if you take it off?” asked Bradley.

“Well, then I just hear nothing, just nothing. It's like this.” Caitlin pursed her lips shut and made a face. “Nothing comes out.”

The segment showed Caitlin in her mainstream classroom, singing a song with other students. She was shown in speech therapy and in hearing test booths. “You don't just put in an implant and hear as well as Caitlin does,” Bradley noted. “Intensive speech therapy is as important as the device itself.” For Caitlin, the combination of technology and hard work was paying off. Said Bradley: “She hears, sings, and talks like almost any of the other first-graders at [her] school in New York City.” According to the program, her language skills—
60 Minutes
did not specify which ones—were two years ahead of her age, and her comprehension skills were three years ahead.

Not everyone was as wowed as Bradley.

“The impression the child gets with all of that focus on the ear, on the mouth, is that maybe the parents would love me more if I could just hear a little better, if I could just talk a little better instead of Mom accepting me just the way I am,” said
Roslyn Rosen, then the president of the National Association of the Deaf, when Bradley interviewed her. The year before, the
NAD had released an official statement, written by psychologist Harlan Lane, “deploring” cochlear implants for kids and saying: “[It is] invasive surgery on defenseless children, when the long-term physical, emotional, and social effects on children from this irreversible procedure—which will alter the lives of these children—have not been scientifically established.” At the time of the
60 Minutes
broadcast, the NAD was lobbying to have the FDA's approval of cochlear implants for children revoked.

Rosen also spoke quite lyrically about her experience of the world. “Many people have said to me, ‘What is it like to be a deaf person? You don't hear the birds sing, the leaves rustling as the wind breezes through the trees, the crash of the ocean as it hits the shore. Aren't you missing those things?'” she said through an interpreter. “All of that is music to my eyes. Deafness is like a prism that plays up brilliantly those things that may be missing to other people.”

After the show aired, Caitlin became a symbol of the wonders of technology—hers is still a well-known name in cochlear implant circles. Melody James called the show “the shot heard round the world.” But
60 Minutes
also received angry letters from Deaf people accusing the program of participating in “child abuse” and “genocide.”

Confrontations between the Deaf community and the medical community became a regular occurrence at international conferences. In France, a group called Sourds en Colère (Angry Deaf) tried to disrupt meetings in Lyon and Paris, and a young man who had received a cochlear implant but turned against the device was cheered as he smashed his processor to bits with a sledgehammer on the sidewalk. In Manchester, England, the Deaf Liberation Front laid empty coffins in the street in front of the building where the International Cochlear Implant Conference was being held and waved banners saying
BETTER DEAF THAN DEAD
. This was a reference to the slightly
increased risk of meningitis caused by implants, particularly by a device used in Europe that included two parallel electrodes with a space between them that proved particularly prone to infection. After six implanted children died of meningitis in Europe, that device was recalled and the cases of meningitis were much reduced, but the Deaf community was angrier than ever.
In Melbourne, protesters filled Collins Street in front of the hotel where Graeme Clark had organized a conference. Their message was:
SAY
NO
TO COCHLEAR IMPLANTS
. Clark remembers, “I was written up as nearly evil.”

Tension between the emotion of parents and the emotion of a newly politicized Deaf community bubbled up in unusual places. Debi and David Leekoff's son, Mark, received a cochlear implant at the age of four as part of the clinical trials. Several years later, Debi took Mark to see a taping of the game show
Jeopardy!
near their northern Virginia home. Outside, Mark and his mother got in the line for preferential seating, which included anyone who was deaf or hard of hearing. Also in the line was a group of students from Gallaudet, with one person who could speak. When they spotted Mark's cochlear implant, they began to yell for the manager.

“You're not deaf,” the group's spokesperson declared. “You should go home.”

“He needs to be taken out of this line,” the students told the manager. “He's not deaf!”

“It was horrible, horrible,” remembers Debi. “Mark cried. He wanted to go home. Talk about bullying!”

 • • • 

The researchers and doctors around the world who were working on cochlear implants believed in their cause, too. They had mixed reactions when they ran up against demonstrators at conferences. Rob Shepherd, who was responsible for safety testing on implants for children in Melbourne, said of the wish to maintain a culture of sign language, “I didn't agree with it, but I could see where it was coming from.” Others were more vehemently angry in response. “It's child abuse
not
to implant a child,” one audiologist told me. Dr. Parisier, Alex's surgeon whose family fled France in the face of the Holocaust, was deeply offended. “I take the word ‘genocide' very seriously,” he says.

These doctors and researchers also spent a lot of time with another group of deaf people—those who did want to hear. Bonnie Poitras Tucker, who wrote about the ADA, certainly did not subscribe to what she called the “deaf is dandy” camp. “
Most of us would
love
[emphasis original] to be able to pick up the telephone and make a personal or business call when and how we feel like it without having to scramble to find an interpreter and without having to make the call with a third person privy to every word,” Tucker wrote. “We'd like to be able to go to a movie or a play regardless of whether captioning or interpreters are available. We'd like to be able to participate in group conversations, to hear the conversation at the dinner table. We'd like to be able to hear music; to hear our children and grandchildren laugh and cry; to listen to the radio when we are driving; to have a car phone; to be able to use the drive-up window at McDonald's; to hear the announcements at the airport; to be able to talk to the person in front of or behind us on a hiking trail; to be able to go to a professional meeting on the spur of the moment; to be able to get any job we want without having to consider how our deafness will interfere with the job duties. We'd particularly like to hear our own voices and to be able to control the tone and pitch and loudness of our voices.”

Like Tucker, those who had succeeded with oral education—and there were plenty—didn't see themselves reflected in all the talk of Deaf culture. Some tried to mount a countercampaign. In the early 1990s, word got out that the Smithsonian Institution in Washington, DC,
was planning an exhibit called “Silent America,” which was intended to help raise awareness of Deaf culture and American Sign Language. The oral deaf community resented that their experience was left out of the exhibit. Angry letters flew between the two camps and to the organizers. Eventually, the Smithsonian gave up on the idea. That was a result, noted one group of deaf leaders, that meant “regardless of what side anyone was on, we all lost that battle.”

 • • • 

In May 2006, four months after Alex's cochlear implant was activated, I sat down at the kitchen table one morning with
The
New York Times
and was surprised to see that
Gallaudet University was in the news again. In 1988, when Deaf President Now occurred, I had been a senior in college studying American social history. I was aware of the protests as an interesting development, but that was all. This time, I read the story with rapt attention. Now it was personal. Would these people play a role in my life? It was a little like considering the parents of a new boyfriend as potential in-laws.

Once again, I read, students were protesting. Once again, they were dissatisfied with the way in which a new university president had been chosen. I. King Jordan, the deaf man who had taken the helm in the wake of Deaf President Now, was stepping down after eighteen years. His protégé, Provost Jane Fernandes, had been named by the board of trustees to replace him the following January.

She was an unpopular choice. Soon after the board announced Fernandes's appointment, the faculty issued a vote of no confidence in her. They and the students said the search process was flawed and opaque. The demonstrations carried not the righteous anger of 1988, born of newfound pride and political coming-of-age, but an anger that was ugly and divisive. Bomb threats kept the gates locked on commencement day. The chair of the board, citing “aggressive threats,” stepped down a week after the decision to appoint Fernandes. Students were quoted in the paper making very personal complaints about Fernandes: She was aloof; she signed poorly; she married a hearing man.

Fernandes, who had grown up deaf but hadn't learned to sign until she was twenty-three, responded by saying that the protesters were locked in a narrow view of deafness and that in their eyes, she was “not deaf enough.” A flyer pasted around campus, however, said: “It's not that she's not deaf enough. She's not enough of a leader.” Looking at the small tents protesters had pitched on the lawn, Fernandes told a
New York Times
reporter that her vision for the university was as “one big tent for all.” Recognizing that the deaf community was facing change from cochlear implants and mainstream education, she argued that Gallaudet had to embrace “all kinds of deaf people.” ASL would always be central to Gallaudet, but the university had to welcome people who hadn't grown up signing as well. “We're in a fight for the survival of Gallaudet University,” she said.

The conflict carried on for months, quieting in the summer and then exploding again in the fall, and I continued to follow it closely. In October, more than one hundred students were arrested for taking over a campus building, and a few began hunger strikes. As in 1988, the protests finally shut down the university for several days. The clash, noted one reporter, “is illuminating differences over the future of deaf culture writ large, and focusing attention on a politically charged debate about what it means to be deaf in the 21st century.”

That was certainly a question I was asking myself.

At the end of October, the protesters won again—at least on the surface—when the board revoked Fernandes's appointment. Students jubilantly celebrated on the university's football field, home of the team credited with inventing the huddle so that their opponents couldn't see their signs.

I was left unsure as to what had really happened. The victory seemed much less clear than in 1988. I had no way to judge Fernandes other than through the news reports, but the demonstrations themselves seemed as problematic as the process they were protesting. Were students going to shut down the university every time they didn't like a board decision? Pragmatically speaking, Fernandes had a point. The pace of technological innovation was unrelenting. It was forcing change on the deaf community. Would a child like mine ever want to go to Gallaudet or another school for the deaf? Would he have to reject his cochlear implant to do it? The devices were so unpopular on campus that students (and professors) were said to feel they couldn't wear them there.