I can hear you now!!

September 9, 2013 9:48 AM

The 2013 Lasker Awards were announced today. Often called the "American's Nobels", they recognize the contributions of scientists, physicians, and public servants who have made major advances in the understanding, diagnosis, treatment, cure, and prevention of human disease. Included in today's crop of recipients are Dr. Graeme M. Clark, Dr. Ingeborg Hochmair, and Blake S. Wilson who were awarded their prizes for developing the modern cochlear implant.

Initially conceived in the 1950s, cochlear implants have a fascinating history (detailed in a terrific paper by Blake Wilson). They have inspired controversy and vigorous debate as to whether or not they pose a threat to deaf culture. And of course, they have inspired an internet/YouTube mini-phenomenon: videos of people of all ages having their cochlear implants activated for the first time. (Previously)

posted by scblackman (2 comments total)

This is a very well-deserved award. The cochlear implant is a remarkable piece of technology that has transformed the lives of thousands of people. It's really amazing to meet people who have lived their entire lives with an implant. Their speech and literacy is the same as any hearing person's. It's mind blowing, really.

The "debate" has ebbed in recent years, as both the possibilities and limitations of the cochlear implant have been revealed. It still certainly exists, but it's also clear that the cochlear implant isn't a threat to deaf culture and it isn't for everyone; for some, it's a means to living a life with a full-range of possibilities.

The videos are wonderful, if not a little misleading. It's definitely got to be an incredible experience to perceive sound for the first time (or the first time in a long time) - but of course the perceptions they are getting are much different than those of a normal hearing person. Still, totally incredible.

I was talking to a woman with implants recently and she was telling me that she loved starting her day in the quiet - that she would usually have breakfast, coffee, get going before she turned her hearing on, and that to her was a major advantage she had over hearing people. It's hard not to be a little jealous of that!

Anyway, thanks for bringing this to my attention. Great post!
posted by Lutoslawski at 11:44 AM on September 9, 2013

Thinking about cochlear implants, about how they've increasingly gained mainstream acceptance, about all of the people they've helped, about how much increasingly better the technology is getting makes me feel so incredibly bittersweet and helpless sometimes. I see how beautiful they are and how many people they benefit, and I absolutely cannot deny that they are fundamentally, a beautiful and incredible and life-changing piece of technology. But at the same time, they make me feel so sad. Not from a Deaf culture perspective, although I've often used the cause as a representative over my internal conflict on cochlear implants, but from quieter and more personal inner voice.

Most people see me and my deafness and see how much of a burden it has been on me. I absolutely cannot deny that. I would not ever want to wish all of the countless ways I've had to suffer and struggle on anybody. I'm honestly delighted when I see a newborn, affixed with a cochlear implant, cry and croon and react to their mother's voice for the first time in their life. I'm glad. They won't have to go through what I've gone through.

But what hearing people never realize is how central hearing loss is to my identity. Most are honestly puzzled when I tell them that having given a second chance, I would still go through life as deaf. After all, having a disability is seen as one of those universal negatives. Why wouldn't I want to be free of it? For the longest time, I thought the same way. I resented having a disability; I resented not being one of the "normal" kids; I resented all my limitations, grudgingly staring at all those flying free. But rage can only hold you for so long; slowly over time, as the redness subdued, I realized how much my hearing loss has given me.

I lip-read, on average, at a 70% rate. Sometimes I can hit 90% if I'm feeling really attentive. But that takes energy; I have to watch the face so intently, looking out for the slightest movements of the lips, the tremors and vibrations of the cheeks of the throat. I give my full attention to people, in a way that most people my age have forgotten how to do. They notice. Likewise, I never have the energy to deal with people who are toxic to me; it was only until later in life I realized how many times that had saved me.

I taught myself to play piano by vibration. Learning the feel of each piano string note by note until the vibrations were ingrained in me. My own profound appreciation for music. Later in my life, my friend, an opera singer, asked me if I could actually hear her when she sang. "No, I can't hear you." Then why did I come to every one of her performances, tirelessly, enraptured and enthralled by her highest notes which my ears could not register in the least? "Because I enjoy it."

That slight smile I share with another visibly disabled person when I pass them on the street. They understand. I understand. That was how I learned the meaning of the word empathy.

Once, there was a girl who asked me, "well, you technically qualify for extended time on exams in a quiet room. Why don't you ever take it?" I shook my head - no, it would be wrong for me to take more than I needed. I know I'm not on even footing in a lot of respects, but exams aren't one of them. I can do fine without it. "Yeah, but if I had a disability, I would be abusing every advantage the system threw at me." I smiled. Having a disability is one of those things that often grants you with an unusual degree of integrity, wasn't it? Of course I never said that to her face.

I never heard those jeers and insults and slurs aimed at my back for walking in public, brazenly and openly gay. And I realized, even inadvertently - that inspired some to follow in my stead. I was the front of a flock of geese flying v-formation, blissfully immune to the winds battering me head-on. And on those autistic days where I couldn't stand the sensory inputs from the world any longer, I could just shut off my hearing aids, and sit there, eyes shut and back to the corner, oblivious to the well-meaning-but-damaging voices, asking me if I was okay. My deafness was there, standing as my ally through my toughest fights in life.

They've been heavy shackles; a ball and chain; they've held me captive in so many ways. But having dragged my disability along for so long, I've become conscious of how much stronger my muscles have gotten for it. And it's not like even a ball and chain can't be useful sometimes - a weight, a ballast, keeping me balanced, keeping me grounded. So I can't resent it. Calling it a ball and chain is no longer the right word, because they aren't objects foreign of me anymore. They are me; they're who I am, and I've grown to learn and accept what they've given me and what they've taken me for as part of the person I am.

---------------

I still remember when I was sixteen years old, sitting at the desk with both of my parents staring intensely at me while the doctor attempted to persuade me into getting a cochlear implant. "Listen," he said, "I know you're really into Deaf culture, but you have to understand - I'm actively involved in the Deaf community, I have tons of Deaf friends, and this technology has done nothing but benefit them. The debate is more or less over - it's not harmful to Deaf culture. You're an excellent candidate for a cochlear implant. You've done impressively well with your residual hearing, there's no doubt you'll transition seamlessly."

I just shook my head, stared at my feet, and replied, "no, I still don't want one."

He didn't understand.

I wanted a world where hearing wasn't the default, and where I was viewed as incomplete, spiritually, emotionally, physically, for not being so.

I wanted a world where my body could be considered beautiful for what it was.

I wanted a world for where I would be able to tell my story in all its complexity and nuance, and not become an inspiration. One of those poor saps that they showcase on mainstream media. Inspirational for riding a subway.

Once, recently, I was lying naked in bed with a boy who brushed my hair with his hands, smiled, and said, "you're almost perfect, but why don't you wear hearing aids?"

I dumped him soon after.

I'm still fighting. It's been three and a half years since I've last worn my hearing aids, relying on a mishmash of lip-reading, of the faintest wisps of residual hearing, of sign language, of repeated excuses and apologies, of a thousand tiny shards of adaptations and strategies, to cope. But I know I can only keep up this fight so long as I am young and energetic and privileged; and eventually, once I'm older and under intense pressure from everywhere and both wiser and dumber for not being willing to put up so much for what is a simple matter of integrity.

I know that it's completely emotional and not in the least bit rational. After all - it's not like getting a cochlear implant will erase all that I've learned, all that I've gained from my disability. All the positive remains, but all the difficulty gets flushed right out. But I'm a stubborn one, and I'm going to cling to that for as long as I can. Because I know the loss of my deafness will represent the loss of my integrity - when I finally decide to get a cochlear implant, it won't because I want it, or because I think I'll enjoy life more with one; it'll because I will be tired of being ground down, day to day, by all of the pressure and coercion from an ableist society, constantly trying to convince me that my experiences are flat and meaningless. That I am a medical anomaly. It will be the day that I give up my body autonomy for the privilege of having not to actively fight culture and media and stereotypes, all the time.

It's inevitable; it's going to happen, and I'm just doing my hardest to postpone it for as long as I possibly can. Because I know that whenever I finally get an implant, it won't be because I want to - it'll be because I'm tired of struggling in a world hostile and aggressive to disability, determined to paint me as a medical case.

Day by day, I have fewer and fewer excuses. The technology is getting better and better, and I can no longer say that I'm waiting for a better model. The device is getting more and more recognized in the public consciousness, and soon employers will even expect me to have one if I identify as deaf. The surgery is less and less intrusive; I'm not even scared of blood or surgery as a medical researcher anyway, and people give me the side-eye when I feign that I am.

One day, I'm going to succumb to that pressure, I'm going to get an implant; I will be wheeled into that surgery room, and I will wake up, surrounded by hearing people cheering at how much I've gained.

But they'll never know how much of my humanity I've had to sacrifice.
posted by Conspire at 6:19 PM on September 9, 2013 [9 favorites]