Sunday, May 30, 2010

"Deaf Pride"

The theme of my last post made me think of an essay I wrote during my junior year of high school, in which I explore my feelings about being deaf in a hearing world. This excerpt is especially relevant:

* * *
....I have always been stuck in the gap between two worlds, never able to put both feet on one side or the other. I think I have always realized this, but never as vividly as I did while attending a winter camp for the deaf three years ago.

Shortly after arrival on the first day, a small group of kids, including me, gathered around three or four high school seniors and initiated a tepid conversation. Not having the asset of previous introductions, our discussion soon steered to the common factor between us, our deafness. Out of the seven or eight present, maybe three had hearing aids, and only one had a cochlear implant. This boy in particular had been raised orally: that is, he leaned more toward the hard-of-hearing side of the hearing-loss spectrum, and thus had enough sensory ability to get along competently in the hearing world without the assistance of sign language. As a result, his signs were inaccurate and fumbling; the other kids latched on him right away and accused him of being lacking in “deaf pride.”

I watched in bewilderment as their flying hands condemned him an outcast, and though they did not turn on me that day I realized that they might as well have condemned me too. It was then that I first understood that we, individuals supposedly unified by the pride of culture they hurled out so bitterly, were in fact worlds apart. Unable to handle their resentment toward the difficulty and misunderstanding of life in the hearing world, they had chosen to retreat within a hemisphere of deaf isolation. Although I knew such bitterness all too well, I had learned how to keep it on a short rein. I did not know what “deaf pride” was, had no personal sense or experience of it. All I knew, all I had ever known, was deaf shame.

I did not gain the opportunity to reflect on this until well after the camp had ended, and when I did, I felt torn between two worlds. This condition is one I have always struggled with as I attempt to live my life in the hearing world while inherently aware that I am deaf, but not until that point did I literally feel the discomfort of being shoved on the fence. The ideal I had clung to, perhaps foolishly, of a happier deaf existence was now permanently dented. I realized that inherently I was more hearing than deaf. This should have surprised me, but somehow it felt natural – albeit in a cold, empty way. I wondered where my piece belonged in life, if it fit into neither the deaf puzzle nor the hearing one. No distinct mold existed after which I could model myself, and so I was forced to realize that my existence is my own.

* * *
The above experience has stayed with me in the four or five years since it happened. Its truth resonates with me now, more than ever.

Saturday, May 29, 2010


The odd part is that I decided to get an implant at all.

I had dinner with a friend last week, and when I told her about my CI, she laughed and said, "You? I'm shocked." But, really, if you had told me one year ago that I would do this, I would have been shocked too.

Until this past October, I insisted to my family, friends, and anyone who knew me that I would never be implanted. It simply was not an option. It would destroy the residual hearing that I did have left - and then, if by some mistake the internal processor did not work, what would happen? I would be stuck in silence, forever. Because of the nature of surgical modification, there would be no test trial. No going back. I regarded the prospect with sinking horror. With hearing aids, I may not hear much, but I do hear. Every morning when I turn them on and shake my brain out of silence, I walk around half-muttering to myself, as if gaining reassurance from the sound of my own voice. It gives me equilibrium. Before this year, I valued that precious hearing too much to give it up, even if with a CI I stood the chance to gain far more. Psychological researchers say that people, as a general trait, are risk-averse. I suppose that's exactly how to describe me.

Besides, even though it's been over twenty-five years since the technology was first introduced, cochlear implants are still controversial in the deaf community. The sign for "cochlear implant" represents a viper's fangs sinking into the side of the skull. This, other deaf people have told me, is not positive. Essentially, some of them believe, receiving a CI is somehow akin to being bitten by a viper. The internal processor is a foreign device imposed on the deaf by the hearing world, by well-meaning but ignorant people who think that being deaf is a tragic disability that needs to be "fixed." (Deaf people, in general, rebel against any suggestion that our hearing loss reflects negatively on our abilities or self-worth.) The external processor, in its unwieldiness, only adds to the stigma.

Before I go any further, perhaps I should make a distinction between deaf and Deaf. Little-d deaf people are generally people who lose their hearing later in life, or who disengage completely from the Deaf world. I consider myself deaf, because even though I have a congenital hearing loss, I live and function predominantly in the hearing world. I have few remaining ties to Deaf culture - for, with rare exceptions, all of my friends are hearing. Of these hearing friends, only a handful sign more than a small assortment of random words and phrases, and most do not sign at all. Considering my level of hearing loss, I would like to think that I cope very well. I speak and lipread, striving to function as much like a hearing person as I can.

On the other hand, I think of the term Deaf as embodying an attitude and a cultural outlook more than a physical characteristic. For Deaf people, being Deaf is something to be proud of, just like being French or Italian. There is likely no other disabled group in the world that bands together in this way. Blind people don't, wheelchair-bound people don't, learning-disabled people don't. These groups may share common experiences or sentiments, but there is no such thing as, say, Blind culture. The reason that Deaf culture exists, I am sure, is sign language. Because deafness is, at its heart, an inability to communicate normally with other people, it is something that requires a visual language to surpass the barrier. As any linguist will tell you, along with language arises culture. For big-D Deaf people, deafness is not a disability at all, but a rich and vibrant lifestyle. The tradition of Deaf people encompasses everything from not speaking and exclusively using ASL to going to Deaf schools and interacting predominantly with other Deaf people. The Deaf community is very small, and because Deaf people tend to have a harder time in the hearing world, they sometimes disdain any efforts to fully "assimilate" with the other side. Assimilation, of course, includes cochlear implants. (A note: I am somewhat oversimplifying this divide: there is a spectrum between deaf and Deaf, and many people are accepting of both the oral and the sign language traditions.)

Although I was mainstreamed from kindergarten on, I went to a Deaf preschool and still had regular, though infrequent, contact with other Deaf people through my childhood and early adolescent years. This contact, mainly through scattered friends and a camp for the Deaf I attended every summer, kept Deaf culture constantly with me. That outlook may not have defined my identity, but it contributed to my perception of myself. Although I did not always agree with Deaf viewpoints, I understood their mindset regarding CIs. Being deaf, I felt, ought to be something I accepted about myself. It ought to be something I could cope with without resorting to outright surgical alteration. Surgery meant there was something to be fixed, something about me that could never be good enough. Getting a CI skewed the focus: it made it all about hearing, about not accepting myself as I was, about trying to fix what was wrong with me.

So what caused me to reverse my viewpoint? I think the answer, in a word, is college. Before I graduated high school and left home to attend a university a thousand miles away, I had always had the support of my family and close friends. No matter what happened, I knew I could come home and communicate with someone. But when I started college, at a university where I was the only deaf undergraduate, all of this changed. I was surrounded by people I did not know, people who in turn knew nothing about communicating with a deaf person. Instead of a confined sphere in which I could feel comfortable, I had thrown myself into the full-fledged college lifestyle, a place of constant interaction with different professors and students, a place of crowded parties and large social groups and scattered conversation. This transition is difficult for anyone, but for me it was terrifying. I felt the full extent of my isolation. I felt as if I had plunged into a vast world that had not been designed for me. Although I had sign language interpreters for my classes and extracurricular activities, the rest of the time I was on my own. Lipreading, I soon found, was never enough. Some wonderful friends made efforts to include me, but many days I felt like I could barely cope. Although it ended up being a beneficial and stimulating time, in truth freshman year was an ordeal. I loved my university, but I did not love myself. And I realized that this was only the beginning of real life, of a world filled with sound. I had chosen to take this path. And I was left asking, How can I ever do this?

After spending the summer at home with family, I fell back into my old relaxation and rhythm. I again felt like myself, like Rachel. Most of the time, the word "deaf" was removed from the equation. Hence my culture shock when I returned to college in the fall of my sophomore year. I was prepared for it this time, and I knew that I could survive (after all, hadn't I survived before?), but this somehow did not make it easier. I interacted with old friends and made new ones. More and more of the people I knew expressed an interest in sign language. Overall, I felt more assured and self-confident. But, in certain moments, I was just as isolated as before. It was neither my own fault nor the fault of the hearing friends I had; it was just a fact of being deaf. Accept it, I told myself. You can't change it. Be content. I had come to view my circumstances as a test of strength and will, but this perception often crumbled in the face of despair. Increasingly, I came to resent the idea that I did not have a choice.

I remember, a few nights in early October, still at the beginning of the academic quarter, lying in bed at night thinking exactly that. I wanted a way out. I could not do this for myself, could not break through the wall of my silence to live the rich life that I wanted. Already an introverted person, in some ways I had become even more reclusive since coming to college. I resented this, just as I resented thinking of my situation as inevitable. I wanted to change something - but wasn't I already doing as much as I could?

The thought came to me: No. I was not. It wasn't inevitable. I had more to offer. And there was another option, an option that I had never allowed myself to consider. I did not want to think of it as a silver bullet or magic cure, for I already knew it was not. But it could help, if only I put aside my fears and my pride. It needed not be a political decision at all, but a way of pursuing the human connection I longed for. It need not degrade my dignity as a deaf person, but increase it.

That's when I first considered getting a cochlear implant.

A Beginning

I've started this blog to tell a story. It's a story that will probably be ongoing through the next several years of my life, and I hope that, by writing, the journey will take on more sense and significance.

Two months ago, on March 14th, I made the decision to get a cochlear implant. I am 20 years old and have been profoundly deaf since birth. (By "deaf" I mean that I have a profound bilateral sensorineural hearing loss, but that's a mouthful. Like many other deaf or hard-of-hearing people, I object to the term "hearing impaired," finding it derogatory.) My decision to be implanted was fraught with complex personal feelings and numerous medical consultations, some of which I hope to go into here. It also involved settling on which cochlear implant manufacturer to use, a choice that at the beginning was far from clear. After weighing between the big three companies of the cochlear implant industry (Advanced Bionics, Med-El, and Cochlear), I decided to go with Advanced Bionics' Harmony device. Again, this was a complex decision influenced by internet research, published studies, side-by-side comparisons, technology platforms, Q&A publications, webchats with company reps, conversations with friends who have been implanted, and other people's blogs. As you can see, it probably deserves its own post.

My surgery is scheduled for June 10, just under two weeks away. That will be the true beginning, to which all of these considerations will be just a prologue. My story, however, does not start here, with this decision, nor there, with the implantation itself. Getting a cochlear implant may be a big change to my life - it may well be a beginning for some things - but it is not the beginning. My entire life, I have been deaf. My disability has not defined who I am, but it has shaped the path I have taken and the decisions I have made. Navigating the hearing world as a deaf person, equipped with the unique skills of lipreading and oral and signed communication, helped along by wonderful friends, parents, sign language interpreters, speech therapists, teachers, and mentors, has been an incomparable journey in itself. It has been full of many highs and lows, many rewards and frustrations. The skills I use are not always reliable, not always enough - and that is what has led me to my decision to get an implant. But acquiring these skills was the real start to my story, and something I hope to write about another time. Being implanted is just the next step, and I see it as a strange and stimulating new frontier into a side of the world that I have never known. The results of my pilgrimage are uncertain, but whatever happens, I know that I can already survive and succeed. At the very least, I am adding another tool to my arsenal.

Let me back up here. What exactly is a cochlear implant? This is a question I've received several times. Upon telling a friend that I plan on being implanted, I get a hesitant smile and the words, "Oh, that's great. Wait, what is it?"

A cochlear implant, for lack of a better description, is essentially a bionic ear. It's a surgically implanted electronic device that translates external noises into electrical signals that stimulate the auditory nerve and, resultantly, cause the brain to receive and interpret impressions of sound. Instead of amplifying sounds like hearing aids do, it bypasses the structures of the auditory canal to insert an electrode array directly in the cochlea (the snail-shaped sensory membrane in the inner ear). In a normal hearing person, the cochlea functions through thousands of tiny, hair-like cells, all of which fire action potentials in response to fluid displaced by physical sound waves. My deafness is sensorineural, meaning that my ear is normal except for the fact that I lack most of these hair cells on the cochlea. Think of a cochlear implant as a computer electrically stimulating my brain into thinking that it can hear. Some say that this is akin to becoming a cyborg.

The external processor has two parts, the behind the ear (BTE) speech processor and the transmitter magnet that conducts the sound signals to the internal device by electromagnetic induction. Mine will look like this:

(image from

There are many wonderful sites and blogs explaining more about how the device works, many of which have been invaluable to me in my evaluation.

Countdown to becoming a cyborg: 12 days. After the device is implanted, the surgical site heals, the external processor is turned on, and then the real journey begins. Countdown: almost one month.

My experience is especially interesting, because I am getting implanted at a later age. Most cochlear implant recipients are either small children whose parents decide to have them implanted, or older people who have lost their hearing later in life. Since stimulation of the auditory nerve is essential to establishing the neural connections that allow the brain to maximally interpret sound, anyone in my situation is at an inherent disadvantage. Although I have worn hearing aids my entire life, the amount of stimulation they have provided my brain is perhaps minimal. We shall see. Although encouraged by some specialists, my own parents declined to implant me when I was young because they wanted me to make that decision for myself - something for which I will always be grateful. But, in my situation, I find myself oddly alone. There is a general lack of prelingually deaf implantees out there. This is a complex and somewhat political topic, but again - more later.

Before closing, a final note: I struggled with what to title this blog. At first, I composed a list of phrases and puns involving the word "ear," and tried to think of some play on the word "audible." Longing to be clever, I knew I did not want to choose something like "Rachel's Cochlear Implant Blog." This journey is about far more than hearing, far more than cochlear implants - it encompasses fundamental questions about identity, communication, and interaction. (If this does not make sense now, I hope that it will soon.) In the end, the title "Perception Unearthed" seemed to fit. I pray that my cochlear implant journey will teach me far more than just hearing. I pray that it will uncover, or unearth, startling insights, lessons, and perceptions about myself and my world. I constantly dwell on clarity and discovery. And, as a means to attain this, I write.