Coming Out as a Deaf Cyborg: Struggling to Create Non-Normative Identities

Translation from French by Chanelle Adams.

I frequently wonder whether or not I can truly identify as deaf because I know that my experience is the exception, not the rule. When I was 18 months old, my parents and nursery school teachers met to discuss my hearing difficulties. My teachers noticed that when they called my name from behind me, I did not respond. Sure enough, following numerous examinations, I was determined to have more than 80% deafness, thus meeting the criteria for so-called “profound deafness.”

I have, more or less, enough access to hearing with my hearing aids to bricolage and experiment with aural and oral communication. My parents wanted the best for me and did not want society to define me by my limitations. They went against medical advice and enrolled me in the traditional school system where I received oral instruction in classes alongside hearing children. Because the intention was that I would learn to autonomously express myself orally without having to depend on a third party translator, I never had the choice to learn LSF (French Sign Language). Not having access to LSF, while still having to survive in the hearing world, left me with only one option: to improve my speech and find a way to be excellent. During private lessons with speech therapists, I studied word construction and phonetics. I learned how to decipher differences in tone and shades between vowels, language pronunciations, and how to lip read with attention to breath. These lessons were meant to provide tools for me to understand those around me, but in reality, they brought me closer to my own body, my own breath and, eventually, led me towards finding my own voice — a voice that speaks as accurately as possible despite my persistent deafness.

I also had to develop strategies for motion. Because my inner ear is permanently out of balance — I hear better out of my left ear than my right ear, whose hearing is almost non-existent — I had to learn to locate an anchoring point between my body and space. Being both out of equilibrium and rooted to the ground forces me to dance with my body and move through space in a way that is paradoxically both flexible and firm. This state of imbalance requires me to compose movements in time with the sound environment, that is, of course after identifying the sounds in the first place. The challenge lies in the fact that it is nearly impossible for me — or at least very difficult — to understand exactly where a sound’s source is coming from. I need to see what I hear to better apprehend it but this requires the grueling work of being continuously alert and on guard. When my movements are forward in direction, I can understand what happens in front of me, right, if I turn my head to the right, left, if I turn to the left. With roughly 110 degrees of vision, what happens behind my back is non-existent in its invisibility to me and that which I can hear from behind me morphs into an incomprehensible mass of sound. For these reasons, the actions of walking and talking alongside someone on a sidewalk remains difficult for me because of the spatial arrangement and the polyvalence of actions required.

As time went on, I worked to hide my severe and stigmatized disability, and its lasting traces faded with each passing year. But I still continued to reflect upon my relationship to deafness. Could I really say I was deaf when those around me incessantly pushed aside my experience of deafness, unable to recognize the nuances of my experience from the normative perspective of belonging to the hearing world? How could I reconcile the ways my skills (though painstakingly acquired in encouraging home and school environments) contributed to my being treated as an exception, when in truth, my disability — one that is not seen or heard — remains illegibly invisible though just as real?

Living in the hearing world has been intense, notably in the way that it forces me to act like a hearing person to the extent that I even hear ghosts in my deaf state. Whenever I see a dog bark, I feel like I can hear it. The same happens when I’m vacuuming the living room or washing my hands under running water. Sometimes I wonder if I really hear in my dreams or if it is just the illusion of hearing, like the ghosts I encounter during everyday actions. At the same time, even questioning supposed non-real / non-existent / non-palpable deafness is a biased framing from the perspective of societal norms. In reality, physiologically speaking, I am definitely and beautifully deaf.

My relationship to deafness / the state of being deaf has come in two evolutionary phases. From the time I was 18 months to 25 years old, I wore hearing aids. The first phase of my experience was defined by the device because it amplified the 20% of my remaining hearing. The second stage began when that percentage dropped to the point of disappearing completely, making my hearing aids obsolete and causing me to become completely deaf. At this point, I was offered cochlear implants, a device comprised of a magnet under the scalp connected to the auditory nerve with electrodes placed inside the cochlea. Internal and external parts of the cochlear implants work together to form bionic ears: a microphone captures external sounds through a device magnetized to the inner part.

During the implementation of the cochlear implants, technology overtook nature. Now, without the implants, my ears are inactive. The use of cochlear implants raises ethical questions for this exact reason: technological interventions, such as replacing deaf ears with bionic ones, could completely eliminate deafness. Aspiring to make deafness obsolete has frightening resonance with eugenics logics that seek to create societies comprised only of normative bodies in all of its ableist and racist implications.

Throughout both phases of technological approaches to my deafness, I continued to spend half of my day in silence. The devices are not waterproof and, at some point, they always run out of battery and need to be recharged. From an early age, I learned how to live, sleep, shower, and move through the world in silence. While I was growing to understand the hearing world, I was also learning more about the deaf world.

Having experiences at extreme opposites, both that of a deaf person and that of a hearing person, has made relating to the outside world rather complicated for me. Because I do not meet society’s stereotypical description of a deaf person — someone who is aging or mute or white, or signs — I have lived between worlds, occupying a mixed identity and trying to find my way through the monoculture of the hostile hearing world (at school, with friends, as well as in other social spheres) that lack empathy and understanding.

My desire to be part of the normative majority was always strong. Being part of a minority, I considered myself the problem. By that logic, I believed I needed to make myself invisible and make my presence easier for others. I learned numerous strategies to be able as to understand the hearing world to pose the minimal possible burden on others, doing my best to suppress my disability — lip reading, body language reading, deductive reasoning from word snippets, and more. I didn’t want to be represented as someone who has a disability because I wanted so badly to fit in. I felt had to prove to myself and to everyone else that I could rise above being deaf and that I could even be better than those who could hear.

Throughout my childhood, adolescence and young adulthood, I wanted to show my limitlessness in my capacity to learn to speak, write, and hear music, with the belief that it was evidence I could transcend / deny my disability, not as a capacity, but by following a path in direct opposition to my abilities. Then, I developed a passion for everything that pushed the limits of my hearing — such as music. At the beginning, music was just a noisy mass. Over time, music became accessible to me, first as a visual experience, then as a bodily experience, through the rhythm and lyrics. I learned Michael Jackson’s choreography by watching music videos and mirroring his movements. Music videos introduced the melodies and rhythms into my universe. The visual medium became the base through which I could build a relationship with each artist, providing access to view and interpret the sound’s source. With FM equipment (an assistive hearing device), I received sounds directly in my hearing aids through a cable, which was helpful during course instruction when teachers could speak into a microphone for me, but it also helped me to hear sound sources from jack-powered equipment, such as radios, CD players, and televisions. Thanks to FM devices, I learned to distinguish and piece together musical variations that had no name.

Song lyrics also provided a way for me to understand the sounds of music: the speed at which words are pronounced, the breaths used to whisper, howl, and sing, in connection to the sounds in the background and finally how the two — the voice and the music — unite. But that was not all. I also insisted upon learning to make phone calls, an action that makes it impossible to lip read or replay sounds. There were so many ways that, as deaf person, I was set on forging down the path of assimilation as far as possible, further invisibilizing an already invisible disability.

Being deaf is not just about being an individual with a sense of hearing that does not meet society’s criteria in the functional sense, but it is also about being considered a disabled body by those who are able (as defined in relation to my disability). They never have to pose the question of who is able, because there is no doubt about who is disabled. Navigating through public spaces had a strong effect on me. I began to internalize the negation of my disability in private spheres as well. For a while, I did not consider myself deaf, even though the disability was surely present — and that was clear to me in my difficulty understanding my surroundings. I persuaded myself that when I was in that state of deafness, it was “nil”; nothing interesting could come from it. It was emptiness, a void. It forced me to be in the position of wanting to hear, and with my hearing aids, hearing was possible.

Throughout my childhood, my hearing devices were prominent features on my shaved head. When I was 18 years old, I chose to grow an Afro. I did it for purely aesthetic reasons but it also blurred the visibility of question of my handicap in public space. Years later, after the cochlear implant surgery, my auditory regeneration prompted me to ask myself how I wanted to introduce myself to new people. I wondered, should I immediately disclose that I am deaf upon meeting someone? Or, should I wait to have a more intimate relationship with someone before telling them? I was unsure about identifying myself as deaf because I both did not want to be considered a victim and, at the same time, I struggled with an invisible disability which prevented me from being understood and having full access to my surroundings. I knew that this would all slowly, but surely, lead me towards depression.

On February 2, 2017, I came out as deaf. I chose not to wear my cochlear implants for more than two months, forcing those around me to adapt in order to communicate with me. Because I am deaf, I now invite those who want to interact with me to write it down on a blackboard, and I reply to them orally. In this position, the relationship of power is reversed, it is up to the hearing person to make the effort to communicate with me all the while recognizing that my deafness is beautiful and real. As we know, turning a disability into an ability is not done in such a way that people with disabilities, themselves, transcend the conditions of the normative world. This reversal of power does not do away with the realities of chronic fatigue, depression, or/and vulnerability. However, it does call society’s conventions and norms into
question.

Living with a disability in our society means living in a society that violently reminds you constantly what you no longer have or never had to begin with. Imagine a movie theater with films screened in multiple languages, all subtitled, all with audio descriptions, and accessibility to the room for those with reduced mobility. In this space, since everyone is welcomed just the same, the question of who is able and who is disabled never comes up. Imagine it being possible for me to take the subway and, in case of an incident, to have the necessary emergency information without having to ask my neighbor to repeat what has been said over the loudspeaker. Imagine if I could access any conference without having to contact their organizer in advance for a supportive device to allow me to roughly follow along. I would no longer have to be put in the middle of a conversation to better understand it, to have some control over not feeling excluded. And no longer would I need to educate people and make them feel emphatic enough to give me access to communication with them.

Being a minority who is part of another minority means I often receive attention for being “inspiration porn.” I am often told “you are very courageous” or “you are brave like a saint.” Even during the simple act of greeting someone, I am congratulated on how well I express myself, which only serves to reassure the person that they are a good person just for talking to me and can now feel hopeful that people can overcome all of life’s challenges and existential problems. One time an administrative officer aggressively scolded me and told me “take off your headphones, if you want to hear me!” because I had the audacity to ask him to repeat a sentence that I had not heard / misunderstood. Sometimes I am fetishized, “no you are not deaf, you are just hearing-impaired because deaf people don’t speak,” or challenged “ok, so if you are deaf, how do you hear me now?” Sometimes I am infantilized as if there is a direct correlation between hearing speed and level of understanding. Because there can be a long time between when I hear something and when I understand what I heard, my slowness is sometimes interpreted sometimes as laziness or lack of intellectual capacity. All of these interactions also serve to further invisibilize the nuanced complexities of my reality. My disabled body is never neutral, and it is always in intersection with being Black, gay, and, HIV positive.

Because of the impossibility of neutrality or “normality” for me, art has become my saving grace. It is impossible for me to control society’s projections towards my body so I create my own space to express the complexity of my existence. By not considering myself as sick and / or disabled, I now chose to identify as a sort of cyborg figure with bionic ears. I am a mutant and mutable, resisting being frozen in one moment but, instead, in perpetual change / movement with other bodies, other identity intersections, and other complexities. Over time, I have worked and reworked my ears, making them more muscular, more malleable, more sensitive. As a cyborg figure, I call my history with hearing into question. In my experimental video work, I recite songs I learned as a child, songs which are part of our collective memory singing them in my deafness.

When I sing, I feel vibrations and images come to mind. I, then, recreate the imagery in front of a camera with my body. To ultimately deconstruct the process, I use my bionic ears while editing. According to what I hear, an image emerges, forced by the sound or rather the sound influences the image, transforming my video work into something synesthetic — because I need to see to understand what I hear.

In my performance practice, I experiment with questions of my body through its bionicity and in its total deafness, the possible intervention of the “magic” in the space between my singing deaf state which is connected to the rhythms of my body, and the singing machine personified by my alter ego inside a TV monitor. The result is a duo in which the ambivalent relationship between the precision of a machine / technology and the self — more instinctive, more sensitive — provokes encounters between the two, sometimes unexpected and sometimes premeditated. Making us wonder about this interval, hardly perceptible and difficult to quantify, results in a demonstration of other ways of communication beyond hearing as it is generally understood.