There are some books that just hit so hard and stay with you for a long time after you have read it, affecting your daily outlook on life and the people around you. This was definitely one of those books for me. I initially borrowed it from the library, then decided I had to have a copy. I was tagging quotes everywhere and quickly realised that I knew I was going to need to refer to this book in the future as my own personal medical circumstances evolve.
Growing Up Disabled in Australia is a diverse anthology of the best kind – a full spectrum of diverse and intersectional authors, sharing their stories in unique formats, and inciting a rollercoaster of emotions and reactions from the reader. The way the book is presented is exactly what the disabled community needs – the authors were able to present their ‘micro-memoirs’ in a way that suited them, whether it be through an essay, a reflection, poems, or as a graphic novel.
I loved that this book introduced me to new people in the disabled community, both people that I could relate to and people who shared experiences that were new to me. The book captures the whole spectrum of human diversity in Australia; from all ages and points in our history, from city to country to indiginous communities, from our genders and sexualities, from the multicultural, multifaceted beauty that is the Australian people.
I learnt so much about how people live their daily lives with disabilities and conditions, and stories of incidents, ordeals and episodes that happened in their lives that shaped them or became turning points for change. I lost count of the many moments of recognition I had of my own journey and experiences. So many times I would exclaim or want to cheer or punch into the air when an author described a scenario that I had experienced too.
The stories and experiences that are shared are joyous, heartbreaking, enraging and comforting – I felt every emotion while reading it.
The book as a whole focuses on the social model of disability. As explained by the editor, Carly Findlay:
‘This model acknowledges the physical, attitudinal, communication and social barriers faced by people with impairments. It challenges these obstacles by arguing that society should accommodate impairments as an expected aspect of human diversity.’
El Gibbs follows up explaining the influence of the medical model of disability versus the social model of disability:
“My disability was all about what was wrong with me and how I didn’t measure up to ‘normal’ people. It was about what I couldn’t do, how broken I was, how aberrant and weird my body was.
The social model of disability, unlike the medical [model of disability], puts the onus on the world to change, not the individual disabled person. It says that that what was disabled was not my particular impairments, but rather the barriers of an ableist society. In this model, the problem with how I looked became about attitudes to 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.”
It made me question my own disability. More importantly, it made me question my own ableism – for example, how many beliefs I had internalised over my lifetime that are unhealthy and destructive, not only for the disabled community, but to myself, as a person coming to terms with my own disability.
The essay ‘Who Counts As Disabled Anyway?’ by Astrid Edwards really hit deep for me personally, tackling the issue of invisible illnesses and asking ‘if you don’t look sick or if your condition is a sliding scale between good to bad, do you really have a disability?’
Ricky Buchanan broke my heart when explaining the dire need for advocacy for the homebound/bedridden population:
“I somehow manage to write the 35-page Just Invisible report in three months. It permanently worsens my disability to do so. It is worth every bit of pain and fatigue that it causes. People use the report to advocate for themselves”.
Our community needs advocates – and we can’t always do it for ourselves, especially when we are struggling to manage our body’s capabilities and do not have the energy, brain power, time or resources to do it.
I would like to thank each and every one of the contributors of this anthology – you all had an impact on me and I’m grateful that you shared your story.
Growing Up Disabled in Australia by Carly Findlay (Editor), Contributors: Alistair Baldwin K.Z. Barton, Dion Beasley, Marla Bishop, Chantel Bongiovanni, Ricky Buchanan, Lucy Carpenter, Emma Di Bernardo, Belinda Downes, Sam Drummond, Kath Duncan, Robin M. Eames, Astrid Edwards, Yvonne Fein, Sarah Firth, El Gibbs, Patrick Gunasekera, Fran Henke, Isis Holt, Eliza Hull, Andy Jackson, Kit Kavanagh-Ryan, Gayle Kennedy, Jessica Knight, C.B. Mako, Kerri-Ann Messenger, Carly-Jay Metcalfe, Tom Middleditch, Oliver Mills, Fiona Murphy, Olivia Muscat, Jessica Newman-Marshall, Khanh Nguyen, Sandi Parsons, Lauren Poole, Melanie Rees, Jane Rosengrave, Iman Shaanu, Jasmine Shirrefs, Tim Slade, Jordon Steele-John, Jessica Walton, Anna Whateley, Natalia Wikana, Todd Winther, Tully Zygier.
I hope if you have read this blog post, that you investigate this book. Our world needs the stories to be shared.
Take good care, Readers. I’ll keep the light on.
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