It’s taken me a few weeks to sit down to write this review. Partly because I wanted to make sure I wrote something sensitive and useful. And partly because I usually try to draw an overarching theme but was finding that really hard for Growing Up Disabled in Australia.
Then it dawned on me – a key takeaway from this anthology of Own Voices stories, poems and essays is that there’s no single, consistent experience of a disabled childhood. There are many, many different forms of disability and they affect every person differently.
Instead I’m going to do something a little different. I’m going to share with you new things I learned, things I found interesting and things I found totally relatable.
The Social Model of Disability
For a long time, society has viewed disability as an exception, abnormal, something that needs to be fixed.
The social model of disability, however, says that it is not the illness or condition that is disabling, but society’s lack of accommodation.
As Carly Findlay explains in her introduction, the social model of disability:
…challenges these obstacles by arguing that society should accommodate impairment as an expected aspect of human diversity.
Robin M. Eames illustrates it clearly and simply in her chapter, ‘Et Lux (also, light)’:
Under the medical model I am considered disabled because I require a wheelchair for mobility; under the social model I am disabled because so few spaces are wheelchair accessible.
It’s a subtle but very important difference. It took me a while to get my head around it, but after reading through the whole book, I think I get it now. There are many other aspects of human diversity we decide to accommodate, and some we don’t.
Try this non-disabled scenario as a way to ease yourself into the concept: shopping with babies would be extremely difficult if you needed to turn around and go home whenever they needed a feed or a nappy change.
Because being a parent of a baby is an ‘expected aspect of human diversity’ – albeit temporary – and parents of babies need to go shopping, as a society we’ve demanded, and come to expect, that large shopping centres will have dedicated parent rooms where babies can be fed and changed.
The ‘problem’ was never that people had babies. The problem was that there were no facilities to feed and change babies at shopping centres.
This might seem like a no brainer if you’re used to thinking of being a parent as something that’s within the range of ‘normal’ and not ‘something that needs to be fixed’. We wouldn’t think of saying, ‘Well people shouldn’t have babies if they want to be able to shop for groceries as well,’ or ‘They should just wait until the baby has grown up if they want to go grocery shopping.’
Disability is a part of humanity as well. It’s an ‘expected aspect of human diversity’, and should be treated by society as such.
If you’re still finding it hard to get your head around this, I highly recommend grabbing a copy of Growing Up Disabled in Australia and working your way through it.
Disability Pride Explained
Fiona Murphy, in her chapter, ‘Wired for Sound’ writes:
…after two decades of hiding my deafness, I’ve developed a strong sense of Deaf Pride. This wasn’t a swift process, nor an inevitable one. It was only when I encountered Deaf culture in my late twenties that I learnt I could celebrate my deafness, rather than feel like my body is broken.
This sentiment came through again and again in the stories of Growing Up Disabled in Australia. That the hardest part of living with disability can be being told that you’re broken and must be fixed, even if the fixes are painful or ineffective.
Getting – and owning – a diagnosis of disability can be empowering. Finding other people with similar disabilities who ‘get it’; being able to join a community.
Anna Whateley, in her chapter, ‘Noisy Silence’, writes:
The labels give me acceptance and community. I’m learning to use the word ‘disability’ positively – validating and full of strength.
On a personal level, getting my own diagnosis of anxiety and depression more than 7 years ago was an absolute watershed moment. Everything made so much more sense, I didn’t feel quite so mad or incompetent anymore. And I could learn how to manage my chronic illness better so that I can live a full life, rather than spending all my energies fighting against it and trying to be ‘normal’.
Which leads me to the next point…
Chronic illness is disability too
When most people visualise ‘disability’ I suspect they either think of physical disability – wheelchairs, vision or hearing impairment – or the intellectually disabled.
Chronic illness is categorised as ‘disability’ as well. Most people get sick and then get better. A few days of rest, panadol and fluids, and they’re up and about on their feet again.
Some people don’t get better. They have an illness that sticks around for months, years, or forever. That’s disability too.
In Australia it’s estimated that 45% of people will experience a mental health condition in their lifetime (source: Beyond Blue). If that’s not ‘an expected aspect of human diversity’ I don’t know what is.
For plenty of people it’s a condition that they learn to live with, rather than one which can be cured. Lauren Poole, in her chapter, ‘Amateur Linguistics’, writes:
Mental ill-health doesn’t live in a hospital or a doctor’s office; for many, it is present always. It took me a long time to learn to treat my depression as a companion – rather than a visitor to be immediately escorted away. The constant suggestion that one should ‘get better’ – ‘get better’ control of anxiety, ‘get better’ and stronger physically, ‘get better’ from incurable conditions – infuriates me. This is my life, for better or worse, or even just for really boring days.
Tip for reading Growing Up Disabled in Australia
And finally, a tip. I do hope you’ll read this excellent book if you’re serious about understanding the lived experience of disability. But don’t try to read it all in one sitting. You may end up rocking in the corner, it’s so very powerful. I became so overwhelmed I had to take a week’s break and read something else for a while, just to give my brain time to process.
Emma Di Bernardo explains it perfectly in the opening of her chapter, ‘Umbrellas in the Rain’:
I’d never read a whole anthology of stories about other people’s disability and illness without drinking a strong cup of tea first.
Maybe for you it’s a large glass of wine, or a stiff beer.
It’s not because these collections are too sad, and it’s certainly not because they’re too boring. It’s because some tiny part of my chest tightens, my breathing pauses, and mentally I need to hold up a small umbrella. A nice little umbrella of emotional resistance that lets me sit through the rain of relatable stories about perennial grief, about finding beauty in ugliness, about never taking the little things for granted. So that not a drop of emotion touches me.
Go and buy this book. Read it. But not all in one sitting.
Growing Up Disabled in Australia is out now in bookstores and online.