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Op-Docs

Between Sound and Silence

For a generation of people with cochlear implants, technology is transforming the experience of deafness.

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Between Sound and Silence

For a generation of people with cochlear implants, technology is transforming the experience of deafness.

People meet me and they think, “Oh, my God. Like, I — I had no idea. I thought you were from a different country.” If it comes up, someone asks, “Where are you from?” And I say, “New York.” They say, “No, no. “But where are you really from?” I usually let them talk and figure me out first. And figure them out first. And also, I just think it’s very awkward to be, “Hi, my name is Becca, I’m deaf.” This is the cochlear implant that I use to hear with. It’s got a magnet. It’s got the part that goes behind my ear. And here’s the microphone. Here are the volumes. The sound is transferred through the wire here and then into this coil. And then it goes through the skin on my head. And then into the computer chip that is inside my head. And then through the electrode array that is wired into the cochlear. And then the sound, once it gets through the cochlear, it sends a signal to the brain. And then, I guess, to the side is generally what it looks like. And here’s my right side. And then, generally, when I do my hairstyles, I try to keep my coils, my magnets hidden. So, what you’ll find is that when I take it off, the longer I keep it off for, the more my deaf disability comes out. My voice becomes more monotone. And it becomes more difficult to think about what I’m saying. The only reason that I know what I’m saying is because I feel the vibrations of my voice speaking to the camera. When I take my cochlear implants off, I cannot hear a single sound. Not even the loudest sound. It’s a complete 100% silence. When I have it off, I am a little insecure about what I’m saying and how I sound. Because I know it sounds different. And — but the second I put it on, I find that my voice goes back to normal. Hiding it means that we can present ourselves for ourselves, rather than putting our disability first. But we aren’t hearing-impaired people. We just have hearing loss. Well, we’re deaf. No. We have hearing loss. No, I really do — I really do want to say that I’m deaf and that I’m not hearing impaired. Because I think it gives people a different perception. And I want to give people a different perception of what being deaf really means. When I first started, it wasn’t the same. I remember having a box on my chest that was under my shirt. And each different device and how much it changed. Kids started noticing that I had something different about me. I still had a body aid. It was about this big and it went directly across my chest. There was no way to hide any of this. So I had almost like suspenders on me with the giant ear molds going into my ears. I mean, there was no way around it. I was different. I don’t actually remember doing this. But apparently, my mom told me I used to act as though it were a radio. Even though there was no music coming in. So that was my first piece of equipment in school. I don’t remember it ever being a problem, other than I can’t be in a water balloon fight, was pretty much the extent of it. Which was disappointing, but, you know, I managed. When I was little, I hated the hearing tests a lot. I hated them because it was having to sit in a room and be forced to acknowledge that there’s something I’m not good at. And that there’s something that’s … harder for me. And it sucks to spend an hour or two hours, however much time, to be, over and over and over, every beep, every word, reminded that you’re not doing well. I am not somebody who fails tests. Things got difficult for me when I started to excel. And the mainstream kids who weren’t excelling couldn’t understand why they weren’t and I was. And that’s when things started to shift. That yes, I’m different. Yes, I have trouble hearing. So therefore, I’m not supposed to do as well. I tried so hard to be, quote, unquote, “normal.” I just didn’t want people to know I had a hearing loss. It’s been something I’ve dealt with pretty much my whole life. Trying to get people to not know I have a hearing loss. And I would say only recently, maybe within the last year or two, have I really come out and owned it. The difficulty, the real difficulty, was when I transitioned into the clinical years of my medical school education. Because they had never had anybody with this type of hearing loss. And everybody was just kind of — “Well, what do you want us to do?” Because I was so high-functioning. I am so high-functioning. Most people look at me and they don’t see me as needing anything extra, see me as being any different. So it was almost harder for them to have to do a double take and say, “Wait, what? “You need help? “You need something different?” When it comes time to being intimate with someone, it becomes a big deal. There are certain nuances. There are certain things that are said. And there are certain instances where I would be completely in the dark and completely in the unknown if I don’t have my hearing aid on, if I don’t have my implant on. And it’s a very scary feeling for someone. So I’m engaged now. I’ve been engaged for maybe a month now. And she’s a hearing person. When we met, I didn’t tell her upfront that I was hearing impaired. She tried to call me, and I would always have some kind of excuse. I would say I’m in the bathroom, or I’m at work, or something. I’d make up an excuse. When we were ready to actually become boyfriend and girlfriend, that’s when I actually told her that I’m hearing impaired. And she was like, “Wow, that makes a lot of sense.” Oftentimes, other people are more uncomfortable with my hearing impairment than I am. And I understand that. People — we live in a society in which, you know, you don’t look at somebody who’s in a wheelchair. Just because you don’t want to make them feel uncomfortable. You don’t say anything, you don’t ask questions. There are people who don’t want to talk about it. And I think that we’re so afraid of being rude that sometimes I think we make these people invisible. And we create a barrier between ourselves and them. And I wish that more people would just ask. There was a definitely a period of time that I had trouble finding a job. I was really unhappy. Every once in a while, I would get the question, “How are you on the phone?” And then I — employers are not supposed to ask you specific questions about how you’re able to do something. Because that’s discrimination if they choose not to hire you. And I definitely got that question, like, hundreds of times. But the risk is that they don’t know — I don’t know when I don’t hear. And I can’t always tell them that. And the risk is — is she going to be able to keep up? I didn’t have to use — oh no, my battery is dying. — Do you have another spare battery? Yeah, of course I do. Yeah. I have a spare battery … I keep every day. I always have a spare battery pack in my wallet. I have a cochlear implant up here. So now I can’t hear, the battery is out. That’s it. And we’re back. I mean it’s … technology — you know, your phone breaks, my hearing aid breaks, my cochlear implant is broken — You adapt. A couple of weeks ago, my cochlear implant actually broke. And I had texted my mom being like, “My unit broke.” And my mom was like, “Your A/C broke?” And I’m like, “No, Mom. “My implant broke.” And she was like, “Your dental implant?” And I was like, “Mom! “My hearing aid! “My implant. “My cochlear implant.” And she was like, “Oh, I forgot. “Sorry.” People ask me questions all the time, like “Do you hear music? “Do you hear sound? “What do you hear? “What does it sound like?” I don’t think anybody really understands unless you live with it. Because you can’t replicate it. You can’t … explain. That first mapping experience, it’s a completely bewildering one. The audiologist turned it on, so to speak. And I’m like, “I don’t — “all I hear is cracks and beeps. “And this is not working. “Hello?” She’s like, “Wait a minute, wait a minute.” And even within the span of 10 minutes, something clicked into place. It was surreal. And I had that weird sort of spasm in my body when they turned it on. Because it’s just, you know, life’s being shot back into you. I think getting my cochlear implant was probably one of the most emotionally difficult times. It was really hard. I had just graduated from college and had just moved back from L.A. I needed to do something. And my audiologist had made a really good point for me. She’d been trying to get me to do it for years. And she said to me — a couple years before that, she said, “You’ll do it when you feel like “you’re missing something. “When you feel like you’re not getting everything you should be getting out of everything.” You just have to learn to embrace it. I mean, I think it took me until college to really embrace how cool this is, that I can hear, and still take it off and be deaf at the same time. You know, it’s something that I’m used to. If I do reflect on it, I never reflect on it in a negative way. It’s always, you know, “Wow, look where I am.” You know, “Look what I’ve overcome. “If I did this, anything else is possible.”

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For a generation of people with cochlear implants, technology is transforming the experience of deafness.CreditCredit...Irene Taylor Brodsky

Ms. Taylor Brodsky is 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 pediatric 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.

Irene Taylor Brodsky is an Academy Award-nominated, Emmy- and Peabody Award-winning director based in Portland, Ore. With Dr. Jane Madell, she directed “The Listening Project.”


Op-Docs is a forum for short, opinionated documentaries by independent filmmakers. Learn more about Op-Docs and how to submit to the series. Follow The New York Times Opinion section on Facebook and Twitter (@NYTopinion), and sign up for the Op-Docs newsletter.

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