“The identity which I had feared for so long is now one of my greatest qualities. It’s who I am. As a 34-year-old woman, I am disabled and so very proud. I teach my daughter about disability, I sing about disability. I speak about disability. I advocate, and I share stories of other disabled people. Now when a stranger asks, ‘What happened?’ I smile, and say, ‘I have a disability’.
The author of these words, Eliza Hull, grew up with a neurological disorder: a condition people treated as a problem that needed fixing, when what Eliza really wanted was to be accepted by the world around her.
She is one of the forty writers who have contributed to Growing Up Disabled in Australia. Edited by OAM Carly Findlay and published just this year, the book is a powerful collection of stories written by people with a disability or chronic illness. In their own words, and with raw emotion, they share what it was like growing up with a disability in Australia, and how their experiences impact them today.
One of the best things about this anthology – apart from the genuine honesty of its writers – is how diverse it is. The contributors are all different ages and come from a wide range of backgrounds: urban, rural, indigenous, migrant and more.
Each person has a unique story to tell. Their accounts range from growing up with a life-limiting illness, to navigating the complexities of the hospital system, to dealing with curious stares in public. Some had an easy time at school, while others moved from institution to institution and suffered under historic government failures. One story focuses on the intricacies of finding the right pair of prescription glasses when you are legally blind; another focuses on friendship with animals. Some stories are funny; others are sad and bittersweet. One story is an illustrated comic strip that explores what it’s like living with a learning disability (and a delightful read).
What all these stories have in common, though, is an experience of ‘disability’ that extends beyond their physical limitations.
Many of the difficulties faced by the writers don’t come from their physical conditions, but the way they are treated by people and limited by the environment around them.
This focus is intentional; Growing Up Disabled in Australia is based on a social model of disability. According to People with Disability Australia, this is a way of thinking that sees ‘disability’ as not just a person’s impairment, but the result of interacting in an environment filled with different physical, social and communication barriers.
Rather than simply insisting that people with disability must change to fit in, it puts the responsibility on our society to change, so that people living with impairment can participate and live as equals with others. It doesn’t deny the reality of living with an impairment, but advocates for disabled people’s right to fully participate as members of our community.
This is how El Gibbs, one of the book’s contributors who has Psoriasis, puts it:
‘In this model, the problem with how I looked became about attitudes of difference, not me being a freak; the problem with public transport was the lack of stairs and seats, not that I couldn’t climb up to the station or stand up for the trip; the problem with employers was their attitudes and inflexibility,; not the way I looked or the pain I was in being ‘too much’ for a workplace. This model also offered me a connection to the wider world of disability, and disabled people.
Ultimately, this was a fascinating book that will interest anyone, whether you are living with a condition or illness, caring for someone, or wish to have a better understanding of disability.
The stories are not just compelling and hard to put down; they also highlight a clear need for people with disability to have a louder voice in our society, if we are to build a more equitable Australia. This is true when it comes to their support. Some of the writers in the book shared how they were never asked they wanted from their support team, or what goals they wanted to pursue. This is completely different to HomeCaring’s philosophy, which puts the person in the drivers’ seat of their care.
The book also makes it clear that while some people don’t see disability as a key part of their identity (which is a valid response), others are proud to disabled – as Carly Findlay writes in her introduction, ‘they wave their flag proudly’. Their rich experiences and insights are part of our country’s story, and they deserve to be told.
Growing Up Disabled in Australia is edited by Carly Findlay and published by Black Inc Books, 2021.