Carly Findlay wants you to know what it's really like growing up disabled in Australia.

"We have all felt that uncanny sensation that someone is watching us. We can’t see them, but we feel something over our shoulder, their intense gaze. It’s as if their eyes are sending out tiny, tangible sparks of light, which tickle or singe our skin. 

"To be physically different is to be continually assailed by these missiles of looking. Those of us who are stareable absorb these sparks into our bodies. We carry burn marks and develop scar tissue. We are tense, bracing ourselves for unwanted attention. We doubt ourselves, our beauty. These fires disable. They can even spread out beyond the hearth to burn others. At the same time, harnessed, they can warm and sustain."  —  Andy Jackson, Growing Up Disabled in Australia.

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To young Carly Findlay, disability had a particular look. It looked like people in a wheelchair. It looked like Paralympians, or the people sharing their 'inspirational' story on the telly. It looked like her classmate with cerebral palsy, who spoke differently to her, moved differently to her, and was treated differently by teachers and her family.

It wasn't until Findlay was in her 20s, when she mentored children with a chronic illness, that she saw herself in that image. She too had a lifelong condition (a rare skin condition called ichthyosis), she too had hospital stays and days off school, she too experienced marginalisation and discrimination. She too is chronically ill, she too is disabled.

"If you don't call yourself disabled, if you reject that term, you don't know how to ask for what you need," the author and advocate told Mamamia. "And so the disabled person in my school year got the help she needed, but because I didn't see myself like her, I didn't ask."

Findlay's adoption of her disabled identity came through community, a tribe of people with ichthyosis and other disabilities that she found online. In the years since, she's used blogs, social and traditional media and books (namely her brilliant 2019 memoir Say Hello) to invite more people into the fold.

Her latest endeavour has been Growing Up Disabled in Australia, part of the best-selling series of 'Growing Up' books that have so-far captured the experience of Aboriginal, queer, African and Asian Australians.

Findlay describes the book, which she pitched and edited, as "history-making". The first anthology on disability authored entirely by disabled people. 

Carly Findlay with Growing Up Disabled in Australia, out February 2. Image: Supplied.

As someone who grew up not seeing herself anywhere in literature or popular culture, it's especially "exciting" for Findlay to have helped shape it and, come February 2, send it out into the world.

"I think being able to read these stories and know that there is help at hand, that there is no shame in that, really would have helped me [as a young person]," she said.

From 360 submissions, she selected 46 that she felt, when bound together, best honoured the title and painted an intricate picture of disability in this country.
The pride within it.
The trauma.
The anger.
The humour.
And most of all, the shimmering spectrum of it. There are stories from writers with physical disabilities, intellectual disabilities, chronic illness and appearance differences, young and older Australians, people of colour, First Nations Australians, writers from the LGBTQI community, parents, famous names (Senator Jordan Steele-John, athlete Isis Holt, musician Eliza Hull) and relative unknowns.

In her piece, Jessica Knight, a writer who has inoperable cataracts and no peripheral vision, writes about eating pot-pourri from a bowl in a cafe because she thought it was mixed nuts. And of mistaking a stranger's toddler for "a small, adorable dog".

In the very next, C.B. Mako writes poetry about being a migrant with mental illness, "Separated. Alienated. Excluded. Erased."

The spectrum.

Listen: this is Carly Findlay's story... (Post continues below.)

In and between the words of these 48 writers, Findlay found through lines.

"There was a lot of mention of medical trauma, and how people have been treated by the medical system," she said. "From the 1940s to people who are experiencing the medical system now. I felt like that was a really big thing.

"Another was questioning disability identity."

Some of the writers prefer person-first language ("I'm a person with a disability"), others see their disability as intrinsically tied up in their identity — Findlay among them: "I am a disabled person," she said. 

Regardless, the book highlights what's called a 'social model of disability'; the idea that a person is not simply 'disabled' by their physical or intellectual difference, but by the societal barriers that prevent them from participating in an equal way (think people's attitudes, modes of communication, and the design of the built environment).

While that may sound a tad academic, the book is not.

Perhaps the most effective (and affecting) thing about Growing Up Disabled in Australia is that it's a collection of stories. None of the usual interruptions, interrogations, and interpretations, no one to comment or play "Devil's advocate". Just a person and their experience, generously shared for us to absorb.

Most of us will find ourselves in there. If not in the author's perspective, then in their friends and relatives, and yes, in the disabling behaviours and institutions they describe. 

Perhaps you've asked a question out of 'harmless' curiosity, unaware of how exhausting and invasive that can be to the person who's answered it every day for years. Perhaps you've assumed a person needed help rather than asked. Or perhaps you've unwittingly launched the "missiles of looking" Andy Jackson describes in the passage above.

That may uncomfortable to accept; your instinct may be defensiveness. But good intent is no substitute for good self-education.

And that's the twin power of this book: not only is it creating a sense of community for disabled people, it's creating better allies.

'Growing Up Disabled in Australia' will be released on February 2 in hard copy, e-book and audiobook.

Feature image: Carly Findlay/Mamamia.