“I tend to be a very modern, flexible person,” she tells me. “In New York after I got my doctorate, I became a consultant for a cochlear implant program in Manhattan. I got very interested in why people were so opposed.” At Gallaudet, she and sociology professor John Christiansen teamed up in the late 1990s to (gingerly) write a book about parent perspectives on cochlear implants for children; it was published in 2002. Immersed as they both were in Gallaudet’s culture, they were sensitive to all the issues. At that time, she says, “A good number of the parents labeled the Deaf community as being misinformed about the merits of cochlear implants and not understanding or respecting the parents’ perspective.” For their part, the Deaf community at Gallaudet was beginning to get used to the idea, but true supporters were few and far between. In 2011, Leigh served as an editor with Raylene Paludneviciene of a follow-up book examining how perspectives had evolved. By then, culturally Deaf adults who had received implants were no longer viewed as automatic traitors, they wrote. Opposition to pediatric implants was “gradually giving way to a more nuanced view.” The new emphasis on bilingualism and biculturalism, says Leigh, is not so much a change as a continuing fight for validation. The goal of most in the community is to establish a path that allows implant users to still enjoy a Deaf identity. Leigh echoes the inclusive view of Steve Weiner when she says, “There are many ways of being deaf.”
• • •
When I knocked on the open door of Sam Swiller’s office, he saw me rather than heard me. Engrossed in his computer and a pile of architectural plans, he looked up, said hello, and reached up to turn on his cochlear implant. Like his brother Josh, Swiller is not deaf in the expected Gallaudet way. He grew up speaking and listening with hearing aids and didn’t get a cochlear implant until he was twenty-nine. “The absolute clarity of a windshield wiper blew my mind for days,” he says with a laugh. Born in 1975, he was already nearly a teenager when the clinical trials for cochlear implants began. His parents thought the technology crude and were suspicious because the strongest proponents seemed to be surgeons, who had something to gain from promoting a surgery.
Growing up with hearing loss made the normal teenage difficulties worse, says Swiller. “You lose your personality a little bit because you’re so focused on making sense of what’s being said to you. You have to work harder; it’s stressful. The excitement of speaking to a cute girl, it gets magnified. Am I pronouncing my ‘s’ right? Am I spitting on her?”
He finally got the implant after his residual hearing deteriorated dramatically. “With hearing aids, I was able to hear maybe a third of what was spoken, then fill in the blanks,” he says. “The implant boosted that to about 60 percent. Now I’m aware more than ever of the 60 percent I missed. It’s given me a huge boost in confidence and a little bit more of a boost in hearing. The CI is what I’m doing for myself to help myself. Now I have it, I think it’s amazing. Life is difficult and you need every type of weapon in your quiver, every resource possible. It’s not a solution for everyone. I’m not trying to put my ideas on anyone else.”
Even with his cochlear implant, he has found a professional home at Gallaudet, and much-needed comfort and ease. Before he got there, Swiller went through a difficult period in both his professional and personal life. “I was questioning my strategy of trying to find work in a very competitive financial field where, whether or not they are real, I’m perceived to have strikes against me,” he says of his hearing loss. Following his older brother’s example, he came to Gallaudet, initially as a visiting professor in the business department. It was challenging on many levels, and the “hardest part by far was becoming proficient in ASL: I had to have an interpreter.” Still, he found himself enjoying this new environment. “I felt the students were giving me a lot and I was gaining a new perspective on what deafness was. It was a celebration and it was beautiful. In the past, I felt proud of what I’d overcome. But coming here, I was really celebrating it and growing in that regard.” He even found that little quirks he’d thought grew out of his own anxiety—like looking over his shoulder all the time—were common in everyone around him.
Now working as a vice president managing real estate for the university, Swiller is helping to open up the school to the outside world. For decades, the surrounding neighborhood in northeast Washington was dangerous enough to keep students mostly within the gates. But it’s an area in the midst of a rebirth, especially along what’s known as the H Street corridor, and Gallaudet happens to own real estate there. “The wall between the hearing world and the deaf world is getting shorter. It’s a more porous border,” says Swiller. He was speaking metaphorically, but it could have been literal, too. “The students of your son’s generation are going to be able to [cross] that border.”
• • •
When I left Swiller, I went to see Matthew Bakke, who heads Gallaudet’s Department of Hearing, Speech, and Language Sciences. Unlike everyone else I met at the university, Bakke is hearing, but he has been involved with deaf people his whole life. Growing up in the 1950s, he had a younger brother who was deaf. “He ended up essentially being a marginalized person because of his education and experiences,” says Bakke. “He went away to residential school at the age of three. Monday morning to Friday evening, he was gone. His education was oral even though he is profoundly deaf. A hearing aid did him almost no good. That was what was available.” After stints in the seminary and the army, Bakke gravitated, like a lot of siblings of deaf people, to being a teacher of the deaf and then an audiologist. His teaching experiences taught him the importance of beginning very early with children. When the children didn’t get language early, he says, “the education was essentially futile. By the time I got them, they had missed so much.”
Initially, he was deeply skeptical that cochlear implants could possibly work. When he saw the video of Bill House and Jack Urban activating an early implant for Karen, the deaf young woman who listened to Beethoven, Bakke’s reaction was not wonder but disgust. “I thought, ‘This is just not reality.’ I felt they were exploiting her and it made me sick.” Then he went to a conference where he met a group of children with cochlear implants. “I saw what they were doing,” he says. “It was a Road to Damascus conversion. I had worked on oral English speech development. I knew how difficult it was. These kids weren’t doing that great compared to what we see now, but it was orders of magnitude better than at the time. I said, ‘These work.’”
That doesn’t mean he thinks deaf kids don’t need ASL. “The message [at Gallaudet] is: Don’t deprive deaf children of sign language, and I don’t disagree,” he says. “I support children being given everything possible. It’s destructive to say that ASL is going to interfere. That’s not based on science, that’s based on bias. It’s the same as with the deaf saying don’t [get an implant]—that’s a cultural bias. But I have a feeling that to survive or prosper really in our world and our culture, English is required.”
After decades working in the field, Bakke now has a personal relationship with cochlear implants. His granddaughter, who is still a toddler, has two. Her parents have signed with her since they knew she was deaf. Today, the little girl signs and speaks, though her spoken language is still somewhat delayed. “I do understand why people would feel hurt about a societal perspective that there’s something wrong with you,” says Bakke. “Is ‘fixing’ the right word? My grandchild did not need to be fixed. She’s a wonderful human being and a gift to the world. She can’t hear. I don’t consider it fixing. I consider it giving her access. When you give a child access, you give a child the ability to learn the way other people are able to learn.”
Views like Bakke’s are still not popular at Gallaudet, and he walks a delicate line there. “Because of my brother, I feel very at home here,” he says. “I had a foundation in ASL. I felt more comfortable coming here than a lot of people would.” Nonetheless, he sees Gallaudet’s future as “uncertain.” His own view of the new realities of deafness is clear-eyed. “The c
ochlear implant is the best thing that ever happened to deaf kids,” he says. “But it isn’t a miracle or a cure. It isn’t even very good. It has real limitations. It’s a wonderful device that opens the world for kids, but it’s not hearing. They’re not hearing kids. They’re deaf kids.” Even so, the change implants have brought is extreme. Says Bakke, “My brother’s life was A and my grandchild’s life is Z.”
• • •
Janis Cole, my ASL teacher, does not have a cochlear implant, nor does she want one. I guessed from an early class discussion on Deaf culture and appropriate labels that she was suffused with Deaf pride and contentment. So I leaked out the details of Alex’s life over the two weeks we were together.
“Thank you for sharing about your son,” she wrote after I turned in a homework assignment in which I asked what the difference between deaf and hard of hearing meant to her (without letting on about the implant). She suggested we get together with an interpreter.
The schedule didn’t work in our favor, and when there was no interpreter to be had, she said we should meet after class alone anyway. “We can do it!” she said.
We sat in the classroom one afternoon after everyone was gone, communicating by signing and writing on a piece of paper. I still have the paper. It’s a collage of emotion. At the center is a list of resources to help me access the deaf community in New York, including a good friend’s e-mail address. But all around the margins of that sheet of lined notebook paper, there are signs of an intense conversation.
I WAS SCARED TO COME HERE, I signed at the beginning. MY SON HAS A COCHLEAR IMPLANT.
I GUESSED, she responded.
On the paper, she drew an arrow and wrote the words “extreme” at one end and “liberal” at the other. “Like in any community,” she added. I circled the word “extreme” and wrote below it, “so loud.”
“They mean well,” she wrote on the opposite margin. “OPPRESSION.”
Smack in the middle, she wrote “Bilingual” and circled it heavily. ENGLISH, she signed. Then she fingerspelled A-S-L.
“Literacy,” I wrote. And “worried.”
We debated that a little, with me signing BOOK and READ and WRITE. In another spot, she wrote “Both,” meaning, Why not have Alex do both English and ASL?
The name AG Bell is scribbled across the left-hand corner of the page. Janis made it clear how much she disliked the listening and spoken language advocacy group. I wasn’t brave enough to tell her the reason I had to leave class a day early was to collect Alex from my mother and fly to Phoenix for an AG Bell convention, but I did say that I thought they had helped a lot of people.
Then she wrote a longer passage: “Many culturally deaf people can hear and speak yet chose Deaf world. Not necessarily mean they not integrate in the hearing …”
She considered for a moment. HEARING, she signed, rolling her forefinger away from her mouth. Then, a finger to her ear and her mouth in succession: DEAF.
“Walk in front of me,” she wrote. Then she put an X through “front.” And wrote underneath it: “Walk beside me.”
It was a quote usually attributed to Albert Camus: “Don’t walk behind me, I may not lead. Don’t walk in front of me, I may not follow. Just walk beside me and be my friend.” It seemed a fair enough piece of advice to guide the interaction between deaf and hearing.
There was a pause and then, to my great surprise, Janis spoke.
“I’m going to talk,” she said very clearly. “Because it’s important.” Then she paused. “I never use my voice here.”
I could see that it cost her something to do so, yet the desire to connect had moved us both. I started to talk and she shook her head.
“You still have to sign,” she reminded me.
OF COURSE, I signed, surprised and embarrassed at how unthinkingly I had reverted to my way of communicating.
She looked at me intently and said with feeling: “I think it’s wonderful you’re here.”
THANK-YOU, I signed, touching my chin with four fingers and then moving my hand toward her. I’M GLAD TO MEET YOU.
Then I wrote it down for emphasis. Under “meet” I added “know”: I am glad to know you.
We stood up. We saw the world a little differently, but that was okay.
27
FROG IN HONG KONG
Mark had something on his mind. He had gotten home late from work. The boys were in bed and we were catching up over a glass of wine. He had a tentative look on his face as if he’d hit pause somewhere between wishful and worried. Then he blurted it out.
“Would you consider moving to Hong Kong?”
I stared at him and tried not to overreact.
“What?!”
“They’ve asked me to move to Hong Kong.”
For a long minute, I didn’t say anything.
“You’re not saying no,” he pointed out, surprised.
I was thinking. I really didn’t want to move to Hong Kong. I had dug my roots deep into the tree-lined streets of Brooklyn. But I knew Mark wanted to go. He and I had lived in Europe for six years and had loved the experience. He had always wanted to live in Asia, too. Plus he wanted—needed—a change at the bank where he worked. Mostly, though, I wasn’t thinking about Mark or about me.
“What about Alex?” I finally said.
Alex was halfway through first grade, and I had finally taken a deep breath and dared to think we were over the highest hurdles. He was reading—phonics-heavy early readers featuring sequences like “the hen is mad, the hen is in the mud, the mad hen is wet” and early Dr. Seuss, like Hop on Pop. He had friends—lovely friends who stopped to place his processor back on his head if the magnet fell off in the playground, which it frequently did. It didn’t seem fair to take him somewhere where it might be considerably harder for him to thrive. We had a carefully cultivated support network: a school we loved, a top-notch doctor, a teacher of the deaf, a speech therapist, and three—yes, three—audiologists (one for the implant, one for the hearing aid, one from the Board of Education to work with his school). Did we need all that? Could we take him halfway around the world and start all over again? Did his success depend on his particular situation or did it mean he was ready to move beyond it?
What weight did his hearing carry relative to all the other considerations that determine life decisions: Mark’s career versus mine, the cost of this versus the savings from that, the happiness of this kid versus the education of that kid, change versus status quo, thirst for adventure versus desire for rootedness? Alex’s needs counted for a lot. But he really was doing awfully well. I opened the door to a small thought: It might not be impossible. The idea was simultaneously frightening and freeing.
A few nights later, we sat the boys down and told them what we were considering. Jake, who was eleven, was teary and shocked. He acknowledged that there might be cool aspects to such an adventure, but he had specific questions like: “Will the pictures be in the same spots on the walls when we come back?”
Matthew, at eight, was dead set against it: “No! No! No! You can’t make me go.”
Alex, who was six, could barely contain himself. Gleefully, he cried: “We’re moving to China!”
Then he flung himself onto Mark’s lap, wrapped his arms around his neck, and declared: “You’re the best parents ever!”
Speechless, Mark and I just stared at each other.
“Okay, I wasn’t expecting that,” I said finally.
“Wow,” was all Mark could manage.
Jake and Matthew started to protest. “He’s only six. He doesn’t understand what it means to leave his friends.”
“I’ll Skype,” said Alex confidently, which made us all laugh, since not one of us had ever used Skype. I guessed he had talked to our German babysitter’s friend back home. Alex turned back to Mark: “I want to see the Great Wall. I want to learn Mandarin, more than just Ni hao. I’ll even try some Chinese food!”
“What does he know?!” cried Jake and Matthew in unison.
&nbs
p; They had a point. Alex couldn’t possibly grasp what it truly meant to uproot our family and move around the world to a very foreign culture. Neither could he think through how much more difficult it might be for him in particular to find a school that worked, therapists to help him continue his progress, and a community that was as warm and nurturing as the one we had in Brooklyn. There would be even fewer people with hearing aids and cochlear implants in his life.
But Alex inspired me. “Let me go!” he was saying. He was brave and adventurous; I should be, too.
I got on a plane to investigate what life in Hong Kong would look like. It wasn’t all encouraging. There was no such thing as a teacher of the deaf. One speech therapist I interviewed had such a heavy Chinese accent it was hard even for me to understand her. We would have to buy some expensive new equipment, since our American FM system—the microphone the teacher used in the classroom—wouldn’t work in Hong Kong. And who would fix a broken hearing aid or processor? That last question was no small matter. In the space of one frustrating two-year period, Alex’s cochlear implant processor was repaired fifteen times. One day, his hearing aid had broken, too, and I had had to leave him standing in the classroom, still and staring, with the same expression he had worn years earlier at that first evaluation. His success was undeniably dependent on technology.
• • •
Not long after my first trip to Hong Kong, on the weekend of Alex’s seventh birthday, I took him and his brothers to Boulder, Colorado, to meet neuroscientist Anu Sharma. She was going to include Alex in her database of deaf and hard-of-hearing children. Jake and Matthew were there to serve as typically hearing children for the study and as moral support for Alex. The EEG measurements Sharma would take of Alex would allow us to compare the speed of his responses to acoustic signals on both sides of his brain, through the hearing aid and through the cochlear implant. And they would help her in her quest to understand if there were clues in the brain to tell us which kids were going to do better with cochlear implants than others. “Say one hundred children get implanted at one year,” says Sharma. “They’re not all like Alex. Some won’t speak that well or hear that well. What about the brain causes that?”
I Can Hear You Whisper Page 33