Cover of book: Growing Up Disabled in Australia

Carly Findlay (ed.)
Growing Up Disabled in Australia

In the opening essay of Growing Up Disabled in Australia, poet Andy Jackson relates how Marfan syndrome causes his spine to curve like “a kind of question mark”. While he never questions his body, there are others whose stares are like “sparks of light, which tickle or singe our skin … To be physically different is to be continually assailed by these missiles of looking.” This collection of accounts by people with disability opens a door to a varied and engaging world – one without the stares that can cause the book’s authors to, as Jackson writes, “doubt ourselves, our beauty”.

Editor Carly Findlay, a writer and appearance activist with ichthyosis, has captured a range of disabilities and conditions in this volume, including Deafness, autism, ADHD, cerebral palsy, intellectual disability, muscular dystrophy, blindness, albinism, Ehlers-Danlos syndrome and cystic fibrosis. She has selected work by First Nations and LGBTQIA+ writers, the young and the elderly, and contributors from rural Australia and metropolitan centres, illustrating how growing up disabled in particular environments shapes encounters with Australian culture and its prejudices. This range is important, because it shows how different prejudices intersect. Iman Shaanu, who is Muslim and vision impaired, writes of her hesitation to disclose her country of origin because she has “always been seen as the ‘other’ by society already” due to her disability.

A recurring theme in the anthology is the difficulty of recognising what disability constitutes. Findlay, in her introduction, says that when she was growing up she rejected the term “disabled” because “I thought it had negative connotations and I didn’t see how it related to me”. Paralympian Isis Holt, when her diagnosis of cerebral palsy was explained to her, “was confused because I didn’t look like what I thought disability looked like: i.e. wheelchairs and severe impairment”. Readers of this volume will see that living with a disability is much more subtle and positive than stereotypes would have them believe.

The collection also emphasises that living well with a disability is impeded less by the individual themselves than by other people, including the medical profession. As El Gibbs explains, the medical model of disability perceived her psoriasis and arthritis as “all about what was wrong with me and how I didn’t measure up to ‘normal’ people”. The social model, by contrast, showed that she was disabled not by her “particular impairments, but rather the barriers of an ableist society” such as negative attitudes and low expectations, or inaccessible design. Understanding the social model offers Gibbs “a connection to the wider world of disability, and disabled people” – a community that fights for rights and equality. This is critical for young people with disabilities as they grow up, because this community often helps them form their identity and provides solidarity and support.

Not all disabilities are immediately obvious. Whereas those who are “stareable”, as Andy Jackson puts it, face outright unkindness, people with invisible disabilities negotiate a different set of challenges. Astrid Edwards, who has multiple sclerosis, does not appear to have a disability, even though she loses feeling in her body and her proprioception is disrupted. Invisible disability means constant disclosure, at the risk of disbelief. In “Who Counts as Disabled Anyway?”, she writes, “Not looking sick makes it harder to describe to others what is going wrong with my body or to explain why I can’t do something that most people can, or why I can do it sometimes and not others.”

Often, given this difficulty, it is easier for people with invisible disabilities to pretend they are able-bodied, although this in turn can lead to a lack of representation. Edwards says she has “always wanted Joan Didion as my MS role model. But America’s greatest living essayist wrote two paragraphs about her diagnosis in 1979’s White Album and has revealed almost nothing since.” Research by academics such as Amanda Tink shows that even when famous Australian writers such as Henry Lawson, Les Murray and Judith Wright do disclose their disability, many people remain unaware of it and how profoundly it shapes their work. Partly this is to do with indifference, but it is also stigma.

In defiance of that stigma and silence, the pieces in this volume testify to the innovation and poetry in writing by disabled bodies. With delicious prose, Robin M. Eames renders their recollection of a childhood in trees: “sunlight filtered through eucalypt leaves, dappling shadow underneath, like the way light appears underwater … When the wind rushed through the leaves, it made a kind of wonderful, unfamiliar music.” Jasmine Shirrefs’ “Motherhand” uses clipped but dense phrases to convey, often with humour, moments familiar to many d/Deaf and Hard of Hearing readers: “ABC News and Ian Henderson and fluoro yellow subtitles live with typos a sentence behind.” Sarah Firth’s “Drawing My Way” is an illustrated essay that recounts how Firth used drawing to help her concentrate and process information at school. As a neurodivergent adult with dyslexia who now works as a graphic recorder, she uses her disability to forge connections, acknowledging to her clients that she needs their help with finding spelling mistakes. “Unexpectedly,” she writes, “doing this has meant that clients and participants engage more closely with my work.” Disability, far from being a liability, fosters connection and creativity.

The volume concludes with another question mark. In her poem “Curve”, Jessica Walton recounts her growing weight gain after cancer, and her sadness for her former life with two legs on the ground, even as she has been given “a golden leg, a speedy blade”. When she relates her story she finds someone who “makes me a curve like a question mark, / only it’s an answer instead”. Walton is taken to a car park and told to run, and “strong curved legs, flesh and metal, pound the asphalt – / more real than any long-lost dream”. Instead of the burning questions and hostility, Walton finds possibility.

Findlay, who had the difficult task of selecting these pieces from 360 submissions, has created a vivid collection that is a question in itself. It asks readers if they are willing to understand that disabled bodies are neither deficient nor a burden, but rather creative, capable and resilient.

Jessica White

Black Inc, 320pp, $29.99

Black Inc is a Schwartz company.

This article was first published in the print edition of The Saturday Paper on February 6, 2021 as "Carly Findlay (ed.), Growing Up Disabled in Australia".

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Reviewer: Jessica White

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