Growing Up Disabled in Australia

Carly Findlay, Carly Findlay

• Publisher: Black Inc.
• Year: 2021
• ISBN:
  9781743821374
• Topic: Social Sciences
• Subtopic: Disabilities in Sociology
• Index: Social Sciences

A rich collection of writing from those negotiating disability in their lives - a group whose voices are not heard often enough 'My body and its place in the world seemed normal to me. Why wouldn't it?'
'I didn't grow up disabled; I grew up with a problem. A problem that those around me wanted to fix.'
'We have all felt that uncanny sensation that someone is watching us.'
'The diagnosis helped but it didn't fix everything.'
'Don't fear the labels.'
'That identity, which I feared for so long, is now one of my greatest qualities.'
'I had become disabled - not just by my disease, but by the way the world treated me. When I found that out, everything changed.' One in five Australians has a disability. And disability presents itself in many ways. Yet disabled people are still underrepresented in the media and in literature. In Growing Up Disabled in Australia - compiled by writer and appearance activist Carly Findlay OAM - more than forty writers with a disability or chronic illness share their stories, in their own words. The result is illuminating.Contributors include senator Jordon Steele-John, paralympian Isis Holt, Dion Beasley, Sam Drummond, Astrid Edwards, Sarah Firth, El Gibbs, Eliza Hull, Gayle Kennedy, Carly-Jay Metcalfe, Fiona Murphy, Jessica Walton and many more.

Dressing to Survive

Jessica Newman-Marshall

I am woman. I know how to dress for each of life’s occasions, fluent in acquiescing to her demands of poise and propriety. Each sliver of my life hangs from a black velvet clothes-hanger in a sedate oaken wardrobe – spaced precisely one inch apart, my life before illness split sharply from my life after.

*

From the darkness of my mother’s womb, I am born raging in my nakedness, vernix caseosa scrubbed from my wriggly newborn flesh and cast across the fiery lands of Kariyarra country.

Family albums record the arrival of Little Venus, bare-bummed in the ports of the Pilbara. I’m unaware of the rules of fabric and flesh, as rich, pindan earth squishes between my piggy toes. My summers are spent nude and careless – the very best way to spend them. Until a puffy display of budding nipples brings an end to my summers of naked sprinkler-hopping and in their place a suitcase of rules: Blue and green must never be seen (unless there’s a colour in between). A woman’s belt and shoes must always match. If legs are daring, breasts must be concealed. Women must never show both at once, nor neither at all; the line between fusty and fucking-asking-for-it is a capricious one.

Despite all this, I am going to be somebody – I am going places.

But life has other plans.

Thirteen

What makes a high-school uniform Catholic? Dad argues it’s the cost. I think it might have something to do with the great big yellow crucifix embroidered on the left breast of my woollen school jumper.

On the first day of high school, Mum excitedly lines my brothers and I up along the eucalyptus-framed verandah to document the occasion, camera in hand. Dad wryly remarks that it’s like herding cats.

My comically long Mary Janes jut from beneath a woolen skirt suspended two inches above my ankles. ‘You’ll grow into it,’ Mum says to nobody in particular. I stand with my brothers, a spidery slip of a girl abuzz with awkward adolescent energy, smiling for the camera – what may have been, frozen in time.

I don’t remember the last day that I ran, or jumped. The last tree I climbed, or the last time I felt hot bitumen beneath my feet as I played street cricket with my family.

I do remember my screams the morning I could not walk, and how they hollowed me out inside.

How did I not see this coming? It all makes sense now. The whispers my parents overheard at my tap-dancing recitals: ‘Don’t her parents feed her?’ My joints continually collapsing onto themselves as I played with my friends in the front yard. My parents laughing when the ER triage asked if we wanted to use our Flybuy points. My limbs: too long. My palate: too high. My joints: seemingly made of rubber. My spindly fingers could stretch across one and a half octaves by my thirteenth birthday. And yet, I was like my Dad. I was like my siblings. We teased Mum for being the odd one out. ‘You’re so short,’ we giggled.

Would I have done anything differently if I’d known this was coming? Was ignorance bliss? I can’t say for sure, but I torture myself with these questions. Nonetheless, I am grateful that I had one last perfectly normal supper before my universe was turned upside down. I went to sleep a child, ignorant of the pain ahead – what a gift that was.

My runners – the ones Dad worked overtime for, justifying the cost because they would ‘last really well’ – are the first to go. Shoes are no good when your legs don’t work.

I take to wearing fluffy bed-socks to insulate the cyanotic blue of my newly resigned feet, much to the delight of our family’s golden retriever, who is allegedly responsible for ninety-one odd pairs of socks. My school dress waits patiently in my bedroom, next to copies of Girlfriend and posters of Delta Goodrem.

Girlfriend becomes Dolly, and Delta turns into Adam Brody. Two full moons cycle past without me leaving a footprint.

‘Dad, I’m in pain,’ I whimper.

He takes a sharp breath. ‘Darling girl,’ he pauses, before continuing carefully, ‘you’re always in pain.’

The world has a short memory. It takes only eight weeks to shift from Jess can be anyone she wants to be to Jess who?

I have no idea how to dress for the part of ‘fifteen-year-old kid in a wheelchair’. I have no idea how to dress anymore at all. Each morning is the same: my spindly fingers, which once danced across piano keys, curl raw-boned in a fist, too weak to zip closed the wool skirt that hangs from my hollowed-out pelvic girdle. My hips grip in protest at the pressure from the band of my underwear, and I allow a single, harrowed cry to escape.

Dad paces up and down the hallway, banging his coffee cup on the kitchen bench.

‘Jess, you have to go to school. Even if you just go for one hour: once you get there, you’ll be fine.’

‘You. Don’t. Under–stand,’ I heave between screams, as ligaments in my hips twist in protest, unforgiving. Ever the peacemaker, Mum hands me a glass of water so that I can gulp down my morning round, powdered life-rings. ‘Once you get there, maybe you’ll feel a little better,’ Mum offers gently.

‘I don’t know what we’re going to do, darl!’ Dad shouts.

Dad always has the answers. I don’t know what it means when he doesn’t. I feel the earth fall from beneath my rotting limbs. If Dad is falling, I’m falling: we’re tied together in a parachute without a ripcord: where will we land?

‘She can’t keep not going to school!’ he yells again.

Mum wipes the tears and spittle from my face. But no scrubbing can erase the tattoo I now wear – The Girl Who Didn’t.

I think of the summer classes just months earlier, when I would lounge on the hot grass with my friends as we baked our lithe legs in the afternoon sun, lazily eating sandwiches. The daily ritual of having ‘anorexic slut’ yelled at me across the yard. My friends and I, smelling of Sportsgirl fake tan, watching wasps lured into soda-bottle traps. I think of those wasps now, sticky and seeing their world from within a plastic bubble. I silently promise myself that I’ll never trap a wasp again.

I wish I knew how to tell Dad that I want to be at school more than he doesn’t want a mortgage, but I know he won’t believe me. I wouldn’t believe that from a fifteen-year-old girl either.

Fifteen

I have pubic hair.

I catch sight of myself as Mum transfers me from wheelchair to toilet. After she closes the door to give me the illusion of privacy, I take a closer look. In spite of myself, I reach down to feel the soft, downy wisps of hair. The brown hairs that I rub between my fingertips are in stark contrast to the natural blonde atop my head. Another deception from my flesh – I am an imposter. Should I dye it? Or shave it? I don’t even know how to shave it.

My fingers snap back with an instant shame when I’m interrupted by a loud knock at the bathroom door, and I hurriedly promise: ‘I’m almost done!’

Each day, the routine is the same. Mum removes my clothes with the tenderness of a mother with her newborn, careful to avoid provoking my screams as she persuades my limbs, emaciated shadows of their former lives, to conform. When I haemorrhage puddles of crimson, she wordlessly mops the floor and tucks me between clean sheets. My straggly blonde hair is always washed, brushed or plaited. As a hairdresser, Mum knows that clean hair makes everything better.

Weekly, I am cushioned by an assortment of pillows and rugs in the car, a hopeless attempt at comfort. We drive two hours to the Royal Children’s Hospital, one way. My doctors are kind, and they are male. They hand me a standard-issue white backless gown.

‘Wear the gown with the back open at the front, and leave it untied,’ the doctor reminds me, turning to his computer while Mum changes me. ‘You can keep your underpants on,’ he reassures me.

It takes precisely five minutes to transform me from a regular fifteen-year-old girl who just grew pubic hair and loves the Essendon Football Club to ‘15 y.o female p.t presenting with Marfan syndrome–type morphology and ectomorphic composition, current BMI of 12.9 at 5 feet 10 inches tall. Generalised ligament laxity correlates with reports of severe, chronic musculoskeletal pain. Arachnodactyly, high arch palate and scoliosis are present. Positive for Walker and Steinberg signs. Significant joint hypermobility. Mitral valve prolapse and regurgitation present. Aorta currently stable.’

I am moved onto the examination bed. My doctor keeps his eyes downcast and hands me a towel in a pretence at modesty. He asks me to lie on my side, facing away from him, chest exposed. He lubricates the echocardiography ultrasound transducer. ‘Sorry, it’s going to be a little bit cold,’ he says.

In the darkened room, lit only by the computer screen, the cold new sensation of the transducer approaches my nipples. My small buds stiffen. I am pert, and I am a paediatric patient. I don’t know how to make sense of this contradiction. I listen to the shame ringing in my ears, perfectly in time with the whoosh whoosh whoosh of the transducer – a Marfan metronome. I wonder if he will laugh with his colleagues about the girl with no breasts.

When he is finished, he hands me a white towel. ‘You can use this to clean yourself up.’ He pauses. ‘You did really well,’ he reassures me.

And he exits the screen-lit room, leaving me to wipe the sticky muck from my xylophonic chest.

As I wheel to leave, I feel the eyes of every person waiting in reception seeing through my blouse to the viscous shame across my chest.

I feel like I’ve done something wrong. I just don’t know what it is or why.

Once I’m cleared to return to school, my House Leader pushes me to my first class in an ‘act’ of solidarity. Wheeling past the portable classrooms, I am acutely aware that my head is rapidly floating past the windows at a comedic height. The sound of 200 chairs scraping, so those seated in them can stand and stare at me in silence, rings in my ears. My cheeks blanch, incandescent with shame.

Later in the day, as I wheel past the toilets, a popular girl from my year level calls out to me across the yard. We’ve never spoken before. She looks around, ensuring her audience is engaged.

‘Hey, Jess! Can you walk at all? !’

My tongue stumbles. I don’t yet have the language of disability: part-time wheelchair users; ambulatory wheelchair users; relapsing-remitting impairments; wheelchair users who don’t have spinal cord injuries. I don’t yet know how to say, ‘Fuck off.’ Instead, I fumble, looking down at my feet resting on the pedestals of my wheelchair.

‘Um. Not really. Um.’ The heat rises in my cheeks. This feels like a public undressing.

‘So how do you go to the toilet then?!’ she shrieks. The flock of raucous laughter ripples through my bones.

I wonder if she can somehow see the new tuft of hair that rests beneath my clothing. How easily she strips me naked.

We may wear the same uniform, but she will never wear my genome. Somehow, hidden as it may be, deep within each and every cell of my body, she can see the truth – I do not belong.

Seventeen

After three years of Dad working overtime to put my brothers and I through private high schools, my Catholic-school blazer is exchanged for a public-school knit jumper.

I tell people that I changed schools because my old school was unsupportive. In reality, it began with a toilet, and ended up with a bag of golf clubs.

‘No, we don’t have any wheelchair toilets,’ the vice-principal tells my parents, smiling sympathetically, his eyes averted from the wheels beneath me which seem to have their own gravitational pull – sucking into them all common adult sense and decency. ‘But if Jess needs to use the toilet, one of you can leave work, pick her up and take her to a wheelchair toilet at McDonald’s, and bring her back.’ They smile broadly. There’s that term again. Wheelchair toilet. Is that a wheelchair-meets-commode? Is it a toilet you can race, bobsled style? Whatever it is, I’m not sure I want it.

Later, I wait in the school office for Mum to collect me from school, so that I can use the magical wheelchair toilet at McDonald’s, between Maths and before English. Sitting idly, I spy a door plastered with a giant ‘Accessible Bathroom’ sign. Tentatively, I push the door open. Sporting equipment spews out noisily: a cacophony of ableist discomfort. Cricket bats, tennis racquets, basketballs, nets and countless sets of golf clubs.

I stare in disbelief. There is no space for me to use the accessible toilet. There is no space for me at all – this is space for golf clubs.

Prior to beginning at my new school, I spend months in Melbourne’s Royal Children’s Hospital. I learn to walk again, dress myself, feed myself. I do everything asked of me, and more. To fail to do so would mean I am non-compliant. I don’t yet know the words ‘medical model of disability’. But I know how suffocating the corset of its control can feel.

Deviance is advancing or rejecting that which violates social norms as dictated by medical social control. I am the Good Girl. A Goody Two Shoes. I do not break the rules. I do not...