Opinion

In The Deaf Community, There Are Pros And Cons Of Receiving A Cochlear Implant

Deaf culture
One woman shares her story, and why she was willing to pay the price for the perception of hearing. Pixabay

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This question originally appeared on Quora. Answer by Cristina Hartmann, dual citizen of the Deaf and hearing worlds.

When my mother asked me in the fall of 1990 whether I wanted to get a cochlear implant, I said yes, terribly curious about the thing called sound that people made such a fuss about. I barged into this thing as many 6 year olds would, with more exuberance than understanding. All I really knew was I was going to hear ... something.

The landscapes of cochlear implants and Deaf culture were different back then. In the early 90s, multichannel cochlear implants were a new technology and few auditory professionals had the faintest idea of how to deal with it. The National Association of the Deaf — one of the most prominent Deaf advocacy groups in the United States—  lambasted the FDA approval, alluding to culture genocide (a position that it has since changed). The debate set off a furor of media attention and public discussion of Deaf culture and medical ethics. It was a bedlam.

As I rolled into that operating room, I was blissfully oblivious to the anger and confusion that surrounded that little device that was about to be surgically inserted into my body. As the anesthesia sent me off to sleepy-land, I didn't know how many hours would go into training, how it would affect my relationship with the Deaf community and Deaf identity, and how speaking and listening would continue to be effortful even 25 years later. Nobody knew. It was a new frontier.

The word regret has never occurred to me, but the word cost has. I paid a price — both figuratively and literally (those things don't come for free) — but it was a price I was willing to pay. Not everyone wants to pay this sort of price.

The cost of time

If each hour I spent on training and "incidentals" were worth a quarter, I would surely have sunk thousands of dollars on this thing. Not chump change.

Despite what those YouTube videos of deaf babies hearing for the first time suggest, hearing isn't a light switch you can flip on and presto, you understand spoken language. The brain is an incredibly adaptive organ, capable of forming new neural pathways and synapses in response to new external stimuli, such as the introduction of sound. This phenomenon called  brain plasticity, however, isn't instantaneous or necessarily easy. As we age, the formation of such neural pathways takes longer and requires more effort.

Not only was I a bit long in the tooth at six, neurologically speaking, but I had never heard before. Unlike most people with hearing loss, I was actually stone deaf, scoring "no-responses" across the board on my audiogram. I had to learn how to hear — form the neural pathways to even as much as process the auditory stimuli — then I could learn how to listen and speak. That took time and effort aplenty.

In addition to the formal speech therapy sessions (one hour each, five times a week), my mother would drill me daily for anywhere from one to two hours. On top of that, my hearing family members would correct my speech at any given opportunity (which is annoying, to say the least). Through this intensive regimen, I slowly, painfully learned how to hear, then to listen, and finally to speak. It wasn't until I was 13 — 7 years after surgery — that I began to speak comprehensibly, more or less. Even then, my speech was silted, effortful, and very limited. I had been a better signer at 5 than I was speaker at 13.

Getting this training in the first place wasn't easy, as very few speech therapists had worked with the brand-new technology before. Hearing aids and cochlear implants are very different devices with different limitations, so one can't apply the same techniques for both. It was only a stroke of luck that a speech therapist who knew Audio-Verbal Therapy (AVT) — a revolutionary and novel way of teaching speech and listening that has since proven effective for patients with cochlear implants — and had trained a few children in the clinical trials lived 20 minutes away. After she moved to Pennsylvania in 1994, the nearest qualified therapist lived an hour away. The field has matured since then, but finding good people is always an issue.

There are incidental time costs: the five-hour jaunts between Syracuse and New York City for mapping sessions as that was the closest center at that time, Kafkaesque interactions with health insurance companies whenever I need a processor upgrade, time spent on repairs and troubleshooting when things go wrong. As cochlear implants become more commonplace, the time cost has decreased. My audiologist is a mere 40 minutes away, practically next door. Dealing with health insurance companies, however, remains an exercise in bureaucratic absurdity.

I ended up clocking in at 11 years of speech therapy, the sessions's frequency and intensity gradually petering out into weekly sessions that were more useless than helpful. By the end, I said, "Enough is enough." I figure that I've done more than my fair share of work, and hearing people can pick up the slack now if they want to talk to me.

Sometimes I wonder what else I could've done with the time I spent cooped up in windowless rooms being drilled on phonetics. Perhaps I would've done research that led to a Nobel Prize. Perhaps I would've gotten into sex and drugs. More likely, I would've watched more television.

The cost of a social identity

One of the questions I asked my mother before I got the surgery was, "Will I be Deaf or hearing?" My mother said, "Both." To this day, I'm uncertain if she was right, wrong, or both.

I was largely shielded from Deaf identity politics until my adolescence. My Deaf friends had known me before my surgery so I remained the same person I always was: Cristina whose sign name meant happy. That changed as we all passed into adolescence and my Deaf friends became aware of identity politics and the overwhelmingly negative view of cochlear implants within the community. The questions began: "Are you a robot?" — usually accompanied with stiff, robotic movements and a silly expression — was the most common one. A few asked, "Aren't you mad that your parents did that to you?" They never quite believed me when I said no. I had suddenly, inexplicably became "the cochlear implant girl" as everyone forgot I was still me.

Unfiltered candor is a prized feature of the Deaf culture, which is a refreshing change from the ponderous political correctness of the Hearing world. It stops being refreshing and becomes offensive when people begin to pass judgment on you and tell you all about it.

My interactions became even more politically charged as I began to meet Deaf teens outside of my small community. Once they spotted the processor behind my ear, the barrage of rhetorical questions began: "How can you justify cochlear implants in children?" "How dare you call yourself Deaf?" "Why are you still wearing that?" They would also bombard me with outright hyperboles and myths that had been circulating in the community.

It didn't matter what I said — even if I could get a word in edgewise — I was treated as the Public Enemy No. 1. My attendance of mainstream schools and an Ivy League university was further proof of my self-loathing. I wasn't Deaf enough, so I was "Hearing-minded" — a pejorative term akin to "Uncle Tom" and "Oreo." The realization that my own friends and people I grew up around thought of me this way profoundly shook me to my core. Deafness, in its cultural sense, remains a fundamental, positive part of me. Something like a cochlear implant never changed that ... at least not for me.

Whereas in the Deaf community, my academic inclinations and bookishness were met with puzzlement and derision, my hearing friends accepted that side of me. That type of kinship wasn't as deep as the one I had with the Deaf. My hearing friends understood my scholarly and intellectual side, but the Deaf understood my background and upbringing. Neither one of them accepted or understood me as a whole. I had no singular social identity that I could rely on. I felt neither Deaf nor Hearing.

The world is different now. Deaf people of my generation have mellowed the rhetoric and greet me with open arms. One guy who had subjected me to such an interrogation upon our initial meeting that I wrote him off as an asshole invited me to his wedding. We had a great time celebrating his nuptials and we are now good friends. Things change and people mature.

Now that I'm in my thirties, I've embraced my lack of social identity. I take much from both worlds — the Deaf and the Hearing — but at the end, I am simply me.

The cost of effort

Compared to natural hearing, cochlear implants are incredibly crude and lacking in nuance. A 22-channel internal component — the one I have in my right ear — has an electrode array that only compromises 1 percent of all hair cells. Cochlear implant give a low-resolution, highly pixelated perception of hearing, not true sound.

The human brain is so remarkable that it can interpret the inferior input of sounds and understand speech, but this takes effort. Even after those years of training and listening, Each piece is crooked and confusing: the context, the person speaking, the timing, the subject matter. "Eee—ttiiiveee book" could be expensive book, extensive book, expansive book, depending on the circumstances. It takes me a few more split-seconds to perform this complicated algorithm, so I'm always a bit behind everyone in terms of auditory processing.

Part of my effortful listening (and speech) comes from the fact that I was older when I received a cochlear implant. Children who get the surgery and training earlier experience less cognitive work, but there is some.

After a long and involved aural conversation, even with someone whose voice I know intimately such as my mother's, I slump in my chair and contemplate a nap. There is no such thing as passive listening with cochlear implants.

What I paid for

I paid a steep price for my implant and I won't deny that. I was — and remain so — willing to pay the price for two reasons: curiosity and necessity due to the fact that I am going blind.

One of the biggest factors that drove me to say yes to a cochlear implant 25 years ago was simple curiosity. I wanted to know what sound was like. In fact, I wanted to know everything that there was to be known, including the Hearing world. I didn't think a world so invested in sound was better, I just wanted to know more about it. The novel, the different, has always excited me and this was no exception.

My aural skills — speech and listening — are certainly limited. My speech is flat and halting and some people struggle to understand me. My listening skills are far from foolproof. I accept these limitations with a smile because I'm not trying to be Hearing, which would be a fool's errant because I'm not. I'm just trying to explore.

Not everyone wants to be a nomad, traveling and exploring the wider world. Traversing the world like the Bedouins is a tough, harsh lifestyle. Some people are settlers and they want to belong somewhere. I am simply a nomadic spirit, relentlessly curious. This doesn't mean that I look down on the settlers. In fact, I think they have happier, warmer lives.

My curiosity has sent me to many different places. I went to a top boarding school as its first deaf student. I socialized in the UK Deaf community as I traveled abroad. I learned about different cultures, both Deaf and Hearing. My cochlear implant helped me do that more comfortably and freely.

Lastly and the most practically, I have Usher Syndrome, which means that I'm losing my sight. I am at the point where I can no longer lip-read, navigate without a white cane, or even read signs visually. Being able to perceive speech, cars, and cross signals enables me to maintain as much independence as I can. Even as going blind has made me acutely aware of the cochlea implant's limitations, it's better than nothing for me. Deaf people with perfect vision can more than compenstate for their lack of hearing but I cannot. It's that simple.

So, I don't regret it. I know that the price I paid was higher due to circumstances of the time. That alone doesn't make me regret anything. Everyone, including me and people in the Deaf community, was reacting to a seismic shift in Deaf culture. I have no interest in playing revisionist history.

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