The casual references to eugenics laced throughout research about deafness didn’t stop me from trawling through scientific databases. Every so often, there was a direct quote from a research subject. As they described their deaf body, their Deaf life, I couldn’t help writing in the margins—Yes! Yes! I feel this too! ‘I don’t want to be labelled…’ said one subject.
‘I don’t want people to be like, that’s the deaf girl. I don’t want to have that label. I want people to see me apart from that.’ When asked would she take ‘normal’ hearing if it were ‘magically offered’ to her, she replied: ‘Deafness is part of who I am…It’s made me who I am. And if anything, it makes me a more well-rounded person. So, I think I’d say no.’
I ran my highlighter over the page, illuminating the text in neon yellow. I was reading a transcription of my own thoughts. In these instances of recognition, I also scribbled questions in the margins. Questions I was desperate to ask the research subjects—I wanted more insight, more intimacy.
Deaf writer and academic Donna McDonald describes the complex loss that comes with a diagnosis of deafness:
[F]ar from being a death sentence, the diagnosis of deafness simply propels a child into a different life, not a lesser life. Evidently, a different sort of silence has been created over the years; not the silence of hearing loss but the silence of lost, unspoken stories.
Researching deafness often left me raw with nervous rage. I found so many instances of deaf bodies being described as damaged. But I risked enduring that sick, electrified feeling for the chance to discover personal accounts. Reading, highlighting and writing questions in the margins was my way of ensuring that these stories weren’t just lost in an archive. There was companionship in marginalia, as well as sorrow.
I began to broaden my search, away from scientific and medical data, towards sociological and ethnographic studies of deafness. That’s when I noticed uncanny overlaps between my personality traits and those of other deaf people—scheduling each day and sticking rigidly to plans; being overly prepared; striving to feel occupied and busy; a willingness to detach from emotions and take comfort in logic; a reluctance to trust others; conflict avoidance—all aspects of my personality I had always resented.
Through reading, I began to appreciate why I could never change myself: living in a hearing-centric society is exhausting, and it takes endurance and ingenuity to survive. My patterns of behaviour create a constellation of control: monitoring food intake, scheduling sleep, setting incremental and long-term career goals, delaying gratification, tracking relaxation time. My behaviour revolves around the need for certainty. Within myself, within the world.
I gasped when I first read the phrase Deaf Gain. A sudden, shocked exhalation.
‘Why had all the doctors told me that I was losing my hearing, and not a single one of had told me that I was gaining my deafness?’ asked Aaron Williamson, the English performance artist who coined the phrase.
Deaf Gain suggests that there are benefits to being deaf, for both individuals and society. The word ‘gain’ is round and pert with possibility—profit, growth, yield, boost—dazzling with the promise of community, language and art, shared experiences that mean not having to explain or justify one’s body.
Reading a complete inversion of the ‘normal’ narrative of deafness was both thrilling and disorientating. Without my realising it, my understanding of deafness had always been defined by absence. The phrase ‘hearing loss’ highlights an obvious absence, but I was also lacking a vocabulary or even the ability to talk about deafness without an undertow of apology.
Although I was exhilarated by the concept, I shrank away from it. It seemed impossible to think of otosclerosis as anything other than a loss. And while I liked to think I had accepted my preexisting deafness, I still reflexively minimised my deafness. At best, it stayed unseen.
Much of my life has been defined by language and my desire to understand it. First by sight, with spelling and reading. Next by concept, for comprehension and conversational control. Then by touch, connecting concepts of pain and injury to bodies. I spent so many years organising my thoughts—‘organise’ as in the medical process of divvying up the soft, wet mess in the centre of the body into distinct organs. But Deaf Gain troubled this sense of order. As long as I considered my own body in strictly medical language, the concept would feel incongruous. I spent weeks trying to think my way towards feeling a sense of Deaf Gain.
Finally, one Friday night, after a glass of wine, I tried to feel it. I closed my eyes. I imagined the fault line between my ‘good’ and ‘bad’ sides closing up, the void filling in: my shadow stretched from left to right, encircling my skull, filling my chest, reaching down the length of each limb, pooling in my toes and fingertips. My body was undivided. It was all deaf.
My breath caught in my throat. I opened my eyes, blinked hard. My thoughts felt forced. While I could map the flow of blood through my cardiovascular system, remapping my deafness felt contrived and entirely unconvincing, more philosophical than physical.
The image of the fault line didn’t leave me. Its distinct margins felt as much a part of my body as my lungs, arse and elbows. My body couldn’t forget anything it had been told about deafness: you are bad, broken and a burden.
In a staff meeting, one of the podiatrists mentioned that they often had patients confide in them, disclosing instances of abuse, trauma or anecdotes that still filled them with embarrassment.
‘It’s amazing what people tell you when you’re working on their feet. They’re sitting in a position of power, no eyes on them, and their most personal stories pour out.’
An occupational therapist agreed. ‘People tend to tell us the most personal things during shower assessments. There is something about the intimacy of bathroom spaces. Even though they are unrobed and already so exposed, they reveal their secret histories. Maybe it is to do with the lack of eye contact?’ She paused. ‘Yes, perhaps that’s it. My patients do also tend to unburden themselves when we’re in the car—as soon as my eyes are on the road, they start to open up.’
I sat quietly, unable to add anything to the conversation. Having spent so long concealing my own worries and fears, I’d never considered how my need to look so intently at others could be a way of silencing them.
Instead of stewing on this discovery, I sought comfort in reading more deaf stories.
As his deafness progressed, Oliver Sacks wrote about the unpredictability of hearing. He took to recording each instance that he was aware of mishearing words:I carefully record these in a little red notebook labeled ‘PARACUSES’—aberrations in hearing, especially mishearings. I enter what I hear (in red) on one page, what was actually said (in green) on the opposite page, and (in purple) people’s reactions to my mishearings, and the often far-fetched hypotheses I may entertain in an attempt to make sense of what is often essentially nonsensical… Every mishearing is a novel concoction…The hundredth mishearing is as fresh and as surprising as the first.
Sacks used his expertise as a neurologist to understand his experience: ‘While mishearings may seem to be of little special interest, they can cast an unexpected light on the nature of perception.’
In conversation, the brain is poised, ready to fill in gaps in speech so smoothly that we don’t register the effort. In trying to determine how this occurs, a group of researchers from the University of California tested how the human brain performs in noisy environments. They created a list of words that are acoustically identical expect for a critical phoneme. The list included couplings such as: faster/factor; voices/choices; novel/nozzle; rigid/ridges; appoint/ anoint; babies/rabies. During the experiment, the key part of the word was replaced by a broadband noise. The subjects readily identified one word or the other, never both. They had performed ‘phoneme restoration’: their brains rebuilt the shape of the sounds so smoothly that they were unaware there had been a gap or distortion. Are hearing people even aware that they are vulnerable to misunderstandings? Perhaps it is better to be deaf? It keeps you alert and curious.
For hundreds of years, stories of deafness have been told by hearing people: the deaf are fallible and endure grim lives. Yet as I read Sacks’ essay, I felt revitalised by the endless creativity of the deaf brain:
And yet there is often a sort of style or wit—a ‘dash’— in these instantaneous inventions; they reflect, to some extent, one’s own interests and experiences, and I rather enjoy them. Only in the realm of mishearing—at least, my mishearings—can a biography of cancer become a biography of Cantor (one of my favorite mathematicians), tarot cards turn into pteropods, a grocery bag into a poetry bag, all-or-noneness into oral numbness, a porch into a Porsche, and a mere mention of Christmas Eve a command to ‘Kiss my feet!’
I began to note down my own instances of mishearings. Each time it felt as if I was sharing a joyful in-joke with Sacks, without the risk of mockery.
I continued to think about Deaf Gain. To describe deafness as anything other than a loss is a subversive act. And yet to live in a body defined by loss is to be shrouded in a skein of grief. Even if your sense of self is buoyant and proud, the language of loss is quietly smothering. The very weight of the word loss is evident in the synonyms that shadow it, which, incidentally, are the words people use when they talk about deafness: accident, disaster, catastrophe, cost, ruin, bereavement, dispossession, wreckage, deprivation.
Without sufficient Auslan to ask Kathy about Deaf culture, I began spending hours on Twitter finding and following other Deaf people. After some deliberation, in August 2019 I updated my bio, announcing that I was Deaf. This was the most visible I had ever been. Soon other Deaf people found me. They too had grappled with the letters (d/Deaf); learning sign language as an adult; managing the expectations of mangers; finding a sense of belonging and community. Now, we reach out to each other and connect. We share resources. My vocabulary grows:
Audism—discrimination or prejudice against people who are deaf or hard of hearing.
Deaf anxiety—a constant feeling of stress and hypervigilance in situations that require listening.
Craptions—auto captions, which produce inaccurate and confusing text.
With each conversation, my deafness feels larger, more significant than ever before. I laugh at Deaf memes; the jokes are startlingly relevant. My story has shifted since I was trying to write the comedy routine—I find hints of humour in the shadows.
Fiona Murphy is a Deaf poet and essayist. Her work has been published in Kill Your Darlings, Overland, Griffith Review and the Big Issue, among other publications. In 2019, she was awarded the Overland Fair Australia Essay Prize and the Monash Undergraduate Creative Writing Prize. In 2018, she was shortlisted for the Richell Prize and highly commended by the Wheeler Centre Next Chapter program.
This is an extract from The Shape of Sound, out today via Text Publishing.