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When disabilities are framed as problems that need solving, can supposed ‘fixes’ do more harm than good?

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Image: Martina Rigoli, Flickr (CC BY-NC-ND 2.0)

‘Why now?’ she asks.

‘I’ve heard that the technology has changed a lot,’ I shrug.

She collects several small measuring tools, each designed for delicate inquiry.

‘You’ve got ears the size of a child,’ she says. ‘I’ll order the smallest size.’

She turns front-on whenever she speaks. Steadies her face and lets me see her lips. She’s used to accommodating the deaf.

*

When I was nine I joined my school’s sign language choir, some three years after being diagnosed with a deaf ear. I’d just happened to be attending a school with a small disability unit. I’d refused to leave my class. I didn’t know those kids. I clung onto what I knew.

I joined the choir because of the gloves. We’d wear all black, like the mums who leaned on the school gate jingling their keys, ash tumbling off the tips of cigarettes. But the gloves were startlingly white. I trembled with whole-bodied excitement.

The teacher’s hands took us through the song word by word. I looked at my hands; they seemed slow but not too bad.

I looked at the kids with boxes clapped behind their ears. Beige bulky boxes. They weren’t simply plodding along with the music; their hands were exquisite. Their fingers slid softly into shapes, both smooth and exacting.

I was devastated. My hands weren’t magical. With a leap of logic, my hopeless hands seemed to confirm that I wasn’t Deaf.

*

Two weeks ago, I typed ‘one deaf ear’ into Google. I’d recently met several people with hearing aids. They didn’t just mention their aids, they spoke with foghorned enthusiasm.

‘It’s just like before,’ they said, ‘or probably even better.’

Better. Better. Better. The beat of better drums in my head. Since finishing school I’ve been increasingly unable to accommodate the acoustics of every environment: the din of bars dizzy and disorientating; my hospital job a sonic collision of beeps and buzzers.

The search engine provides the technical term –‘unilateral hearing loss’. The label feels wordy and dense. I scroll down. I recoil when I read the clinical description: irritable, socially isolated, jumpy, and perceived as boorish, socially awkward and evasive.

Since finishing school I’ve been increasingly unable to accommodate the acoustics of every environment.

Unlike my typical hypochondriac moments, this is a description with a definite diagnosis; this was a description of me.

Each dot point collides with a memory – asking for people to repeat themselves, frantically chasing the flow of conversation, mute and marooned in a crowded room. The list fixes, firm and fast. My sense of self feels synthetic.

*

She consults my records, including the graphs that have been plotted by previous audiologists.

‘You’re an ideal candidate for a CROS aid,’ she says. ‘It has a microphone that captures sounds and feeds them to your right ear.’

She holds up the device. It’s a small plastic box with a see-through tube no thicker than hair.

‘To locate the source of sound, you need two working ears. This aid will mean that you’ll no longer have to rely on just your eyes.’

I squirm as the memory of playing Marco Polo surfaces. Those excruciating forty minutes at year seven camp. I threw myself around. I lunged and leaped. I starfished, with feet and fingers reaching, reaching, reaching. My skin slapped the water. Eventually I was too exhausted to call out ‘Marco’ anymore.

The promise of precision is heart quickening. Better. Better. Better.

‘This device will make sounds three-dimensional,’ the audiologist continues.

‘Three-dimensional?’

‘With only one ear your brain cannot focus, which is why the world sounds flat.’

Is that what I’m hearing – a flattened version of the world? I think about my favourite songs. I am sure I have felt music. After all, I have moved to it as if being tumbled and tossed in the drum of a washing machine.

I eye the device greedily. Better. Better. Better.

‘Test it out for a week and then let us know if you want to buy it.’

I nod. I’ll figure out a loan, anything to rid myself of this flat world.

Is that what I’m hearing – a flattened version of the world?

I take the hearing aid, my fingers trembling as I try to figure it out. I run my finger along the curves of cartilage. I press the tube into place. A few short notes like the scales on a xylophone ring in my left ear. I shiver with delight. I reach for it. My ear. My left ear.

‘Stay facing the desk.’ She walks to the sink behind me. The water splashes the porcelain. Next she turns on the air conditioning unit. It wheezes as it pushes out chilled air.

‘So?’ she asks.

Her voice lands sharp like a dart.

‘How is it?’ Once again her voice lifts up above the din. The other noises slide back. I catch the words with a jolt.

‘Now?’ she’s still behind me.

‘Well–’

That’s odd.

‘It’s not bad actu–’ it happens again. My skull is filling up with my voice. ‘It’s fine. It’s fine,’ I nod. My hair is a cacophony of curls. It screeches past my ears like low flying seagulls.

A few minutes later I step out of the office. My ears are hot. The boxes are buzzing. The thunderous thud-thud-thud of steel capped boots. The sharp strike-strike-strike of spiked heels on tiles. The squeak-squelch-squeak-squelch of rubbery runners. The slap-slap, slap-slap of thongs. The sounds of shoes are flooding my body. A claustrophobia crawls over me.

I linger by the door. It’s a small tiled enclave, with a few empty shopfronts; a railing separates the concourse from the pavement. I flinch with each squeal of tyres. I step forward. Sound surrounds me, clobbers me from all sides. My body sways as though I’m teetering on tip toe. I fall towards a wall. I cling to the cracks and watch trucks roll past.

My eyes skitter back and forth, back and forth. I’m no longer in charge of their slow, methodical sweep. Sounds bleat for attention, jostling their way to the fore. My brain whirls. I absorb all the sounds without discrimination.

I force myself up the street. Every action has acoustic consequences. My clothes, previously innocuous cotton blends, shriek from the friction of my skin. I hold my arms still, stopping their swing. Finally my clothes soften with sweat, becoming more of a whimper.

The heavy thread of my feet reverberates through my eardrums. I slow down and lift my feet, almost frog marching; they return to the ground with high rope caution.

I stand at the pedestrian crossing. I’m halfway home. The pedestrian light changes pitch, jackknifing through me. I stumble across the street. I want to stop but, as if caught in a storm, I rush forward, my hands covering my head.

Sounds still slither in through my ears, nose, mouth and eyes. I yank off the aids; the world softens with a sigh.

Once home, a heavy whole-bodied fatigue blankets me before I hit the bed. Sounds still slither in through my ears, nose, mouth and eyes. I yank off the aids; the world softens with a sigh.

I speak to myself as I pull off my clothes, testing if my skull is free of my speech. Silence slides over me like a cool, oily lotion.

*

I look at the black case. It sits like an anvil. There’s six more days. Six whole days that I can only escape when I fall into bed and push my head hard into my pillow.

Another day passes. Muscles twitch and tense. I feel ambushed by nervous energy.

Who’s in charge? my eyes, skin, joints and spine seem to ask. My body feels unfamiliar. I move with the cautious thread of a trespasser.

My brain – soggy, useless, slow – holds onto the noises. I long for the steady predictability of sounds. Sounds hound me like snarling pack of dogs.

*

The trial rattled me. The world terrifying and thunderous – staying so, even once I returned the hearing aids. I fell towards silence. I wanted to scour the noise from my skin, to sink back to how it was. I burrowed deep into myself. Rooms seemed to teem with noise. I couldn’t rid myself of the franticness of it all.

Then I catch myself closing my eyes while listening to music, a long held habit I’d never scrutinised. I can feel music rush over me, mixing with blood and breath. The hair on my forearms stand on end. I notice my muscles twitching in time with the beat. I see colours flood my mind, perfectly fitted to each note – bold, brilliant and fully formed. I begin to question the clinical description.

New research shows that during sensory deprivation, there is an experience-driven reorganisation of the brain. The areas responsible for each sense don’t shrivel up – rather, other senses pitch in to make up for the deficits. For the Deaf and hard of hearing, neural connections creep in from visual and tactile centres. So essentially, rather than just using two holes in the head to funnel in sound, a hard of hearing person also feels and sees sound. The entire body becomes a receptor, essentially a giant ear.

The classic medical model of disability simply describes the deficits of a condition, with the implication that it needs to be fixed, or cured. In my pursuit for normality, I disabled my sense of self. It has been over a year since I tested the hearing aids, and from this safe distance I can consider the experience without the rush of overwhelm. My mind has settled back into its gentle hum. I can see that during the trial, and for many months afterwards, I embodied everything on that list of symptoms. I wished I’d never read it. The cool clinical language haunted me. All I thought about was how flat the world sounded.

I would not change how I hear music, or the world, how I feel the bounce, vibration and tremor of sound waves. There is nothing flat about that.