Aug 2018 New York Times

Aug 2018 New York Times

For a generation of people with cochlear implants, technology is transforming the experience of deafness.  By Irene Taylor Brodsky an independent filmmaker and the parent of a deaf child.

A lot can happen in two generations. I was born to deaf parents and now I’m the mother of a deaf son. He was sitting on my lap in diapers when the audiologist first detected he couldn’t hear everything. By the age of 4, he heard nothing.

I grew up in the 1970s around lots of deaf people. In deaf time, it was the prehistoric era, before modern TTYs (teletypewriters) were common, and before the Americans With Disabilities Act and smartphones even existed. Scientists and surgeons were working on a device to improve hearing. The hope was that the device, called a cochlear implant, might eventually enable even profoundly deaf people to understand speech and to articulate a typical human voice. The closer they got to that goal, the more resistance they met. Some deaf people bristled at the implication that they needed to be “fixed” with an implant. They lamented what they considered the forced disconnection of deaf children from an unadulterated deaf experience with signed language. When the F.D.A. finally approved cochlear implants for American children in 1990, the global protest movement peaked. The American Sign Language word for “cochlear implant” was two curved fingers zapping the base of the skull, like a snake biting its prey. At colleges for the deaf, students with implants were shunned.

Around that time, I was in Nepal, documenting the lives of deaf people and learning their signed languages. I saw no assistive communication devices, and as in many impoverished countries, discrimination against deaf people was rampant. Deaf children couldn’t get a basic education. No one was complaining about the opportunity to hear better there. Whether to get a cochlear implant was, and still is, a first-world debate.

As a daughter and a filmmaker, I felt certain that technology was making things easier for deaf people. But now, as a mother, I mostly felt anguish. All the decisions involving the raising of a deaf kid in the 21st century really came down to one: Do his father and I ask surgeons to drill into my son’s head and thread an electrode array into his cochlea, all for the sake of sound? We weren’t asking political questions. We were asking human ones.

My parents had just gotten cochlear implants, at 65. I made a documentary about their experience, but it was less about their decision to undergo the surgery — for them, that was an easy one — but how, once they could hear, their relationship to the world, and to each other, changed. The sound of our voices, of birds, water and wind, was exciting at first, but then bewildering, even annoying. My parents had already built such meaningful and accomplished lives living in silence; I wondered if introducing the ability to hear into their lives was worth the risk of losing all that. After all, all the implant does is open a new pathway to sound. What our exquisitely human brain does with it is the thing that really matters.

“Implant him early in life,” one of our son’s doctors, Jane Madell, advised us, “and I promise, the brain will do the rest.” A renowned paediatric audiologist, Dr. Madell was researching the same questions I had: How does augmenting a sense fundamentally shift the human experience, particularly in deaf kids?

Our search for the answers became this film. We interviewed 14 of Dr. Madell’s former patients, those young enough to be born after cochlear implantation was viable yet old enough to have insight into the experience. They had navigated the frontiers of deafness, disability and the human experience. They spoke to us about identity, sexual intimacy and coming of age somewhere between sound and silence. And they talked about the sometimes wrenching decision of whether to hear or not. That’s a choice most of us will never make. And it’s one we ultimately decided we want our son to take on for himself, each day, as he grows up. We implanted him at 4, then again (on the other side) at 8. Today, he takes his “unit” off sometimes to read, experience music differently, or just to have a break in total silence. His grandparents are teaching him sign language, and he just learned the new sign for “cochlear implant.” It’s no longer the snake bite, but simply two fingers fastening to the head, like a magnet. The sign, just like deafness, has evolved.

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