What Cochlear Implants Did For My Son
By Lydia Denworth | September 20, 2013 | Wall Street Journal | Topics: Hearing and Sound, Parenting and Family, Science and Health
Researchers who were just awarded the “American Nobel” have opened up the world of sound to the deaf.
There was a time when almost no respectable scientist would have anything to do with cochlear implants. In the 1970s, pioneering researchers who thought they could create a device that allowed the deaf to hear and speak were shouted down at professional conferences. The National Institutes of Health refused funding on “moral grounds”: The idea was so improbable it was deemed a “cruel incentive” for parents and possibly harmful for children.
Soon after the scientific community began to acknowledge the possibilities of implants in the 1980s, members of the deaf community rose up to protest the medical approach to deafness. They argued the prosthesis was deeply offensive because it was designed to “fix” something they didn’t believe was broken.
Things have changed dramatically. Last week, three pioneering researchers—Graeme Clark, Ingebord Hochmair, and Blake Wilson—shared the prestigious Lasker-DeBakey Award for Clinical Medical Research for their work in developing the implant. They will accept the award often called the American Nobel on Friday afternoon in New York City. The award citation says the devices have “for the first time, substantially restored a human sense with medical intervention” and directly transformed the lives of hundreds of thousands of people.
I’ve seen this up close. My 10-year-old son, Alex, is one of the 320,000 people with a cochlear implant.
A few days before the Lasker announcement, Alex, who got his implant when he was two, started fifth grade in his mainstream school and was nearly indistinguishable from the other children. He moves “fluently” in the hearing world, as researchers put it. The only obvious difference is the piece of brown plastic he wears on his ear and the magnet that attaches it to his head. The work of the Lasker honorees and their many colleagues enabled my child to learn to talk and read. This year he’ll even be studying Spanish.
In addition to being Alex’s mother I am a science writer. I have spent the last two years researching the scientific and cultural history of the cochlear implant, seeking to understand the ways in which our experience of sound changes our brains.
The Lasker Award honors the determination and innovation of the scientists involved, but that is only part of the story. The decades of argument over implants speak to the difficulties of grappling with a technology that intersects so intimately with human fears, desires, and identities. In this moment of celebration, it’s important to be clear-eyed about what implants have changed and what they haven’t.
Alex is still deaf. When he takes off the external piece of his cochlear implant and the hearing aid he wears in the other ear, he hears very little. Even with his equipment on, the electrical hearing provided by the implant has nowhere near the nuance and detail of natural hearing. “It’s like playing Chopin with your fist,” one scientist told me. Alex misses much of what is said in a noisy classroom or around the dinner table. Music is a non-starter for most users.
For too long, the implant was viewed rather simplistically as either miracle or menace. It is neither. It is an impressive piece of engineering that can open up the world of sound and spoken language and sometimes lead to better educational achievement. What it doesn’t do is transform a deaf child into a hearing one, belying both hopes and fears that a child will be “changed.”
Technology, then, is only one leg of the stool—albeit a critical one—supporting Alex. When he comes to me with frustrations or questions, I find myself drawing on the messages of pride and acceptance born of the deaf civil-rights movement. The idea that deafness is a difference, not a deficiency, is newly resonant for me. I remind him about the many successful implant users we know, but also about the happy, fulfilled people I have met at signing deaf schools like Gallaudet University and the National Technical Institute for the Deaf.
Cochlear implants have altered political realities for the deaf community. Ninety-five percent of deaf or hard of hearing children are born to hearing parents, and most of those parents aren’t swayed by anti-implant arguments. I am not either. To maintain, for instance, that parents should wait until a child can decide for himself ignores the facts of child development (and parental responsibility). The earlier a child receives an implant, the better it will work.
The success of cochlear implants owes much to scientists’ evolving knowledge of brain plasticity. Blake Wilson, who designed an innovative speech processing strategy, has said the device really worked when they were able to set it up well enough to “get out of the way” and let the brain take over. That was certainly true for adults who lost their hearing after years of talking and listening, but it also turned out to be true for many young children who used the cochlear implant to develop spoken language.
“What’s that thing on your head?” I heard a new friend ask Alex recently.
“It helps me hear,” he replied, then added, “I think it’s pretty cool.”
“If you took it off, would you hear me?” she asked.
“Nope,” he said. “I’m deaf.”
“Cool,” she agreed.
Then they talked about something else.
Moments like that make me deeply grateful for the technology that allows Alex to have such a conversation, but also for the hard-won aplomb that lets him do it so matter-of-factly.