When I was nine, my class went on a field trip to a sensory research lab. A local TV crew came along as part of a human interest story on what schoolchildren thought about animal testing. It must’ve been a really slow news week. All of my classmates mugged for the camera as the crew filmed us, thrilled at the prospect of fame, as modest as it might’ve been. When the reporter asked for volunteers for on-camera interviews, everyone’s hands went up, including mine. The smartly dressed reporter smiled and pointed at me. She picked me! I was chosen! were my exuberant thoughts as I dashed off to be interviewed. It never occurred to me that I might’ve been selected for any reason other than being cute.
When my mother and I watched the story later that week (with captions turned on), the focus had shifted. It was no longer about the ethics of animal testing, but about me.
It was one of those “miracle cure” stories. The narrative went along the lines of “this nine-year-old girl who was born profoundly deaf received this revolutionary new technology called a cochlear implant, a bionic ear that has brought her into the hearing world.” The reporter went on to explain how I was one of the first few hundred children to receive a cochlear implant after the FDA approved it for pediatric use in 1991. Interviews with my teacher and other adults popped up where they all said how wonderful I was, making me seem downright angelic, which I most certainly wasn’t.
They aired the interview about animal ethics, which had become a marginal part of the story. I can’t quite remember what possessed me to decide to speak instead of sign that day. Excitement, I suppose. I had only recently begun speaking in my auditory training sessions and was nervous. I tried very hard to enunciate my words, tripping over unfamiliar words like ethics and multi-syllable words like testing. My speech was labored and incomprehensible. The effort was drawn all over my face as I sounded out the words. My auditory therapist later said “You tried very hard” in her kind way. The reporter praised me on my lovely voice at the end of the segment.
I felt none of the pride or vanity that might come from having a TV news segment devoted to you. I felt sick and embarrassed. I hoped that my classmates wouldn’t think of me narcissistic or attention-seeking. Something else about the segment made me uneasy. It took me years to pinpoint it. It was the first time I had truly seen that people simply saw what they wanted to see or in this case, heard what they wanted to. The reporter didn’t truly see or hear me. She saw and heard a miracle.
This odd myopia has happened over and over again in the decades since that day, although not always with the “miracle” narrative. Sometimes I am turned into a tragedy. A writer for The Economist described me as complaining about my lack of “normal” voice. What I actually told him was: “I don’t hear or speak normally, but that’s okay. I hear and speak, but that’s what it is. I can hear and speak.” I have somehow managed to become fodder for both sides of the debate. The absurdity of it makes me giggle a little.
Living with a cochlear implant is more complicated than the polarized narratives in the media would suggest. When you meld man and machine in a deeply human society, the outcomes aren’t simple or clean.
Hearing For the First Time isn’t All It’s Cracked Up to Be
I was six years old in 1991 when I was rolled into a small operating room in New York City. The nurse held up a mask and pantomimed inhaling deeply. I nodded and breathed in the noxious gas. My last thoughts before I drifted off to sleepy-land were: That was stinky. This bed-thing is hard. I hope they give me a softer one soon. Then everything went black and the surgeon began to cut and drill.
I was a keenly visual child. As one of the rare few who are born totally deaf — my audiogram had “no reaction” across the board — I understood and interacted with the world with my four other senses. I used a combination of Signed Exact English (SEE) and American Sign Language (ASL) as my main mode of communicating. With those who didn’t know Sign, I gestured to make myself understood. Communication was easy as I divided my time between deaf and hearing people. Deafness never felt like a burden. It was simply a part of me, a benign variance like hair color. The way I saw it, some people were deaf and some were hearing. That was that.
I wasn’t insensible to sound’s existence. As well as being heard, sound can be felt. I danced along to the pulsating vibrations as the speakers blasted samba and bossa nova during my parents’s Brazilian parties. I felt the rumble of my mother’s voice as she put my hand to her throat to show me what voices were like. The rest of it — the sounds of talking, of birdsong, of babies crying — was out of my reach, an abstraction. This never bothered me because I was content with what I did perceive.
So, when I say getting a cochlear implant changed the course of my life, I am not exaggerating. It introduced a new dimension to my life, which isn’t always a pleasant experience.
What the YouTube videos of babies blinking at the strange sensation and adults crying at the “first sound” don’t tell you is what happens afterwards. The surgery is the easy part. The real work comes afterwards. Nearly all recipients need some training to make sense of their cochlear implants. The time and effort needed for such training varies based on a variety of factors, the most important being the age of implantation and profundity of one’s deafness. I ended up on the more intensive side of the spectrum. I had been too deaf for too long.
After an anticlimatic activation session that wouldn’t have gotten a million views on YouTube, I began to feel — not quite hear — new and disorienting sensations that felt like prickling from within. As a creature of sight and touch, I perceived sound in more familiar terms: feeling. As my brain began to form the neural pathways to perceive and process the noisy world around me, the confusion and disorientation deepened. I understood little of the logic of sound: why some were louder than others; why some elicited people’s attention while others didn’t; and the meaning of any of it. Sound is meaningless until you can ascribe meaning to it. I had to learn how to do that.
That meant rehabilitation, or in my case, training. Just as an amputee must learn how to use a prosthetic, I had to learn how to interpret the new stimuli streaming into my mind. That involved more than nine years of drills where I distinguished uni-syllabic from multi-syllabic sounds, repeated isolated syllables, and recited the lines of children’s books after hearing them. I attained a decent mastery of the spoken language. I can communicate verbally with those who are willing to decode my accent and repeat themselves occasionally.
A miracle didn’t produce these results. The time and work expended by several auditory professionals, my family, and me, made that happen.
What the videos and stories also don’t tell you is that the outcomes of cochlear implants are variable. Many people — including congenitally deaf children — thrive with the devices. They speak and listen so effortlessly that it’s hard to believe that they were ever deaf. Some don’t do so well. They struggle with speech and listening. Others, such as myself, fall somewhere in between.
Reasons for such disparity are not fully understood. Age of implantation and method of rehabilitation only explains part of the differences. Research into this is still in its nascent stages, but some suggest that cognitive factors affecting auditory processing play a large role.
What one perceives with a cochlear implant is nothing like analog hearing. We cannot even say that one hears with a cochlear implant, as it only provides a representation of sound. Since cochlear implants bypasses the whole process of hearing, we cannot call it hearing. I remain unsure to this day what to call it.
Not only do you not really hear with a cochlear implant, what you perceive is a degraded, low-resolution signal where fine distinctions in frequency are lost. The volume of the signal isn’t a problem. The resolution is. Analog hearing is to cochlear implant’s digital sound what today’s HD televisions are to 1950s black and white television using an antenna. You perceive the images just fine on the latter, but it doesn’t have the fine details of the former.
This resolutional difference means that people with cochlear implants have difficulty distinguishing certain sounds of similar frequencies, such as /t/ and /k/ as well as /b/ and /p/. This seemingly minor difference turns listening into a puzzle — did he say beach or peach? Was that word cosign or design? The puzzle can be pieced together quite easily under ideal circumstances: a quiet environment in which you can see the person for any visual cues. Noisy situations? The puzzle just got exponentially harder.
Am I Hearing or Deaf?
One of the questions I asked my mother was whether getting a cochlear implant would make me hearing or deaf. “Both” was her reply. That turned out to be true and false all at once.
When I went into that operating room, I knew there were some Deaf people who opposed cochlear implants, but I didn’t grasp to what lengths their antagonism went (or would go). The National Association of the Deaf (NAD), a prominent advocacy group wrote a fiery position paper castigating the FDA, alleging grave procedural and ethical errors in its approval of pediatric cochlear implants. Protests were held. Mass media caught wind of this controversy, featuring it on multiple news shows and primetime dramas like CSI and Law & Order.
By the late 1990s, the anti-cochlear implant ethos had solidified amongst the Deaf. At places such as Gallaudet University — the only liberal arts university of the Deaf in the world and a cultural mecca of the American Deaf — speech was frowned upon and so were overt displays of devices that assisted with hearing such as hearing aids. Some went as far to refuse to move their lips as they signed, preferring not to contaminate ASL — the natural and organic language of the Deaf — with hearing English. To reject all things hearing was righteous resistance against oppression. The battles lines were drawn in indelible ink.
The rhetoric has mellowed in the last decade. The NAD has moderated its position. More students with cochlear implants are now enrolling at Gallaudet, which has a cochlear implant center. More and more Deaf parents are implanting their deaf children while raising them bilingually and biculturally. The community is adapting now, but that took time.
I was largely shielded from this fury during my childhood due to my youth. My mother wasn’t spared. She had once been anointed one of the good hearing parents — as she exposed me to Sign and brought me to Deaf gatherings to be with people like myself — and had that approval quickly withdrawn when she decided to get me a cochlear implant. People in the community questioned her right to compromise my bodily integrity. Some said that she was sentencing me to a life of eternal unhappiness. She tells me today that they made her feel ashamed and depressed. “But I thought I was doing the right thing … I still think I did,” she says now.
The tide of recrimination turned toward me during my adolescence at the turn of the millennium. I had grown into a bookish teen who preferred academic rigor to social integration. I used spoken language on a regular basis as I was the only deaf student in my district. Refusing to speak would have been social suicide. I maintained close contact with the Deaf community. That was where I had come from, after all.
The jokes started harmlessly enough. They would sign You’re a robot! followed by a pantomime of C-3PO’s stiff movement accompanied by a silly face. I laughed along. It was just normal razzing! As I grew older and met more Deaf people, the comments became less amusing and more pugnacious. People told me I should transfer schools, that I shouldn’t speak, that I was unhappy. There were many shoulds in their signs. A few called me hearing-thinker, the sign for hearing people relocated from the mouth to the forehead, a pejorative term akin to “Oreo” or “Uncle Tom.” Not everyone acted this way, but it happened often enough to make its mark. I felt betrayed and like a Benedict Arnold all at once.
Nothing’s that simple. I didn’t betray the Deaf nor did the Deaf betray me. We both simply believed in different things.
The Hearing world — as we call it in the Deaf community — can be a terribly inhospitable place for anyone with a hearing loss (or communication issues, for that matter). The onus of communication always falls on the deaf person’s shoulders. They are the ones expected to bend to the aural language with little reciprocity. They are pitied, infantilized, and often thought as less intelligent. That’s not even getting into the long history of linguistic oppression, which includes the century-long ban on Sign in deaf schools based on a misguided idea that speech is inherently superior to Sign. We now call this bias audism. For whatever reason, this term has yet made its way into dictionaries, but that doesn’t invalidate its truth. I know all this because I’ve experienced every one of them. It is hard to be deaf or hard of hearing in a world that makes little room for you.
The Deaf world provides a complete contrast to the Hearing one. Everything from language to customs is accessible by sight or touch. Being Deaf isn’t seen as a deficit; it is seen as a wonderful, joyous thing. After feeling the coldness of the Hearing world, most Deaf people can’t fathom any deaf person who isn’t self-loathing could want to be there. That would be inconceivable. The logical corollary became: she has been brainwashed into hating her deafness and is profoundly unhappy.
My reasons for participating in the Hearing world (while maintaining contact with the Deaf) cannot be reduced into self-loathing. I quite like myself most days. I consider my deafness an inextricable part of my very person that has brought me much good. My pride in my deafness, however, doesn’t mean that I want to close myself off to the wider world. The Deaf world is a wonderful, bracing place, but it is a small place. As someone with a serious case of wanderlust, I want to know what the rest of the world is like as well as the Deaf world. Using spoken language makes that easier. Along with my curiosity, I also put a premium on academics. Deaf universities and programs provide excellent education, but I wanted to broaden my horizons. If you asked me to choose between being Deaf and being nerdy, the latter would win.
As I’ve lost my place among the Deaf, a place among the Hearing hasn’t materialized. Most hearing people know little to nothing of the Deaf culture beyond the CSI episode they saw in 1997. This widespread ignorance means that most hearing people I meet, interact with, work with, and befriend, have no understanding of where I came from. They don’t realize that I used a fundamentally different language from my parents and sibling. Nor do they know the buoyant feeling I get when I happen across a Deaf person and we both sign me-deaf-same! They have no clue how profoundly conflicted I remain about my cultural identity. We can talk about other things, but that part of me remains in the shadows. The same is true for my Deaf friends where my life in the Hearing world, too, remains apart.
As this dichotomy of identity has arisen, I’ve begun to question the usefulness of grouping ourselves as such. Am I Hearing or Deaf? Maybe it doesn’t matter. I’m me.
My Profoundly Ambivalent Relationship With Sound
Many hearing people exclaim “How wonderful! You can hear running water!” upon discovering that I have a cochlear implant. Sometimes music or baby laughing is substituted for running water. Whatever sound they choose, the assumption is that I have the same affection for sound as so many others do.
When I turn on my processor in the mornings, I go from total silence to a cacophony. The world is full of unpleasant noises — dogs barking, metal scraping on concrete, jackhammers’s rat-tat-tat-tat — yet music and babies are the only things people think of. Those unpleasant noises bother me more than an average hearing person. I must have a weaker filter. Whenever a crow caws nearby, I wince. Every time.
As for the more pleasant notes, I remain only moderately pleased by them. When I listen to music, I think “that’s nice,” which doesn’t quite amount to the transcendence others experience. My spotty hearing isn’t completely to blame. Many deaf people — with or without cochlear implants — love and enjoy music. This makes me the oddball here.
I have a more functional relationship with sound: I use it to communicate and to improve my environmental awareness. Nothing more.
Instead of venerating the sounds of running water and babies cooing, I look forward to my silent moments. I will often turn off my processor — my cochlear implant’s external component — when I get home and everything goes still and silent. Calm and peace define these times. I do my best thinking in silence, a temporary reprieve from the cacophonous world. Silence can be as beautiful and moving as sound. I luxuriate in this beauty until it comes time that I must reenter the noisy world of sound.
I appreciate sound for what I can do with it. I can communicate with hearing people with more ease. More people are willing to interact with me. I don’t, however, exalt it. The sound of running water isn’t as great as people think it is. Not to me, at least. Sorry, guys.
The Bionic Woman Didn’t Have to Deal With This
When you have a piece of machinery inside your body, new concerns fill your life from the prosaic to the philosophical.
Fashion posed a special challenge during my youth. Back in the dark days of the 1990s, cochlear implants weren’t the relatively sleek behind-the-ear processors that they are today. They were a box the size of a deck of cards with a long wire snaking up to my ear to a small, beige anchor behind my ear. From that anchor, another wire extended to the magnet affixed to the side of my head.
Carrying and concealing this bulky device became an ongoing game of hide-and-seek. My first solution was the infamous fanny pack, which stored the box while allowing me to tuck the wire under my shirt. Dresses became impractical, which I didn’t mind since I was a tomboy. Once I hit puberty and suddenly developed a (questionable) sense of fashion, fanny packs were out. I devised many creative methods of concealment, including tucking it between my breasts. It did the trick hiding most of it while being incredibly uncomfortable. Vanity knows no bounds, even if you’re the bionic girl. Despite my efforts, I never could hide the wire dangling from my ear. Wires really don’t match anything. My efforts at concealment weren’t purely vanity. Some people kept grabbing the wire, thinking that something had fallen out of my hair. The day that I got the first behind-the-ear processor was a happy day indeed.
Batteries have become my constant companions. From the AA batteries of the olden days to today’s pebble-sized 675s, I always have some rattling around in my bag plus some rechargeable ones. I must do this because I cannot simply waltz into a drugstore and buy a fresh pack. Batteries sold at drugstores just don’t have the power I need, so I need to order them special.
When my cochlear implant emits two beeps only I can hear that signals my battery’s imminent demise, my mind immediately jumps to: Where are my batteries? I need to get to them as soon as possible. If I happen to be talking to someone, I excuse myself and swap the batteries. After years of practice, I’m quite fast at it. Yet, there’s always something that changes once I’m done. People just don’t look at me the same way again.
Cochlear implants, just like cell phones and computers, abide by the increasingly brief life cycle of a technology product. Advances are made in design and microchip processing that result in a better product. (Not as often as Apple, but often enough.) This leads to some complications if a part of the technology is surgically inserted and not easily upgraded. I still have the original internal component — the Nucleus 22 — in my right ear, which is supposed to last me a lifetime. It has become harder and harder for the increasingly sophisticated processors (external components) to work well with the relatively decrepit internal components. I sometimes feel as if I have a 1988-era monitor hooked up to a 2017 processor. One day I will likely go under the knife again because the processing technology has surpassed the electrodes’s capacity to carry the signal. I won’t even get into dealing with insurance companies, which often turns into an exercise in Kafkaesque absurdity.
Some concerns are more worrying. As I become more aware of my own mortality as I age, I wonder how my cochlear implant will affect my life as I grow older and more infirm. As one of the earliest recipients, restrictions surrounding my cochlear implants are more severe. I cannot get a MRI unless the magnet is removed surgically, potentially interfering with future diagnosis and treatment. Any treatment involving electric currents near my head might cause tissue damage and permanent injury to the device. Blunt force trauma is also a concern; my skull won’t withstand such force as well as someone who hasn’t had the surgery. Most of all, we don’t know the long-term effects of this sort of electronic stimulation in humans. Mice have come out of it all right, but I am not a mouse.
As a machine with intricate parts, the cochlear implant is vulnerable to damage or failure. This fragility of machines makes me all too aware of how breakable things are. We often take naturally-born senses for granted. Most of us don’t think we’ll go blind or deaf or numb tomorrow. But that reality feels more evident and ever-present when you rely on a machine to access sound. Sometimes I find myself resenting my reliance on such a flimsy device that might one day up and die. During those moments, I say, “What can you do? That’s just the way it is.” The sentiment isn’t quite that comforting.
Cochlear implants are neither a miracle nor a tragedy. Like most things in life, it is somewhere in between and different for everyone. Some days, it’s a nuisance that has brought a cultural war upon me. On other days, it’s a great little device that allows me to connect with people I wouldn’t otherwise.