Growing Up Disabled in Australia is the most recent in the Growing Up in Australia series, and like the others, it’s illuminating.
My disabilities may limit the length of my life but not its value or its fullness. All lives are marked by grief and joy in equal measure. Nobody loves without suffering and nobody knows gladness without pain. My life is not unique for that, and no more tragic than anyone else’s (at worst a tragicomedy). There are forms of happiness availability to me that I would have never known about if I wasn’t disabled. And I am happier now than ever before. I am living deeply, and fiercely, and without reservation. (Et Lux (also, light), by Robin M. Eames, p.112)
Readers may recall that I reported on an author event about this book in which I mentioned that the book is based on ‘the social model of disability.’ However, I misrepresented what that is: it means more than including physical, mental and social disability.
‘The social model sees “disability” in the result of the interaction between people living with impairments and an environment filled with physical, attitudinal, communication and social barriers. It therefore carries the implication that the physical, attitudinal, communication and social environments must change to enable people living with impairments to participate in society on an equal basis with others.’ (People with Disability Australia, cited on p xi.)
One of the most striking examples of this was seen on our televisions when Greens Senator Jordon Steele-John took his place in Federal Parliament. Parliament House in Canberra was opened with great fanfare in 1988, seven years after the International Year of the Disabled in 1981. Senator Steele-John uses a wheelchair.
This is a building that was built in 1988 and at the time they were patting themselves on the back for the number of accessible toilets they put in the public areas. But not a single piece of the working areas of Parliament House was built to be accessible, even by 1988 standards. When a man who used a wheelchair, Graham Edwards, was elected to the House of Representatives, they changed an office for him but nobody thought to change anything on the senate side of the building. Because again the thinking was, ‘Oh, that’s an anomaly, it will never happen again.’ (‘You Are Enough’ p.80)
As Steele-John says, there’s an unwarranted assumption that disability is an aberration, which leads to changes being deferred (or more often, not even thought about) until they have to be implemented.
There are 47 contributors to the anthology. In the Introduction, Findlay explains that she took…
…an intersectional approach when selecting the work. The people in this book are disabled, chronically ill, mentally ill and neurodiverse, and inhabit the city, regional and rural regions and Aboriginal communities. They span generations—some are elders and some are still growing up—and genders, cultures and sexualities. (p. xi)
Not only that: these contributors vary in their attitude towards being included in the disabled community. Not everyone in the book sees disability as part of their identity, but some are waving the pride flag loudly; both responses are valid. For some, diagnosis and a label is the key to getting the help you need; for others it’s just not part of who they are.
But diagnosis can be exhausting, and hideously expensive and it can take years.
Doctors in Australia aren’t taught much about connective tissue disorders, so nobody knew what to do with me. Without a diagnosis I couldn’t access support or treatment. Without support and treatment, my disability degenerated to a point of crisis. I lacked coping strategies. I didn’t connect with the disabled community because I didn’t know that the disabled community existed. I didn’t think of disability as an identity category or an axis of marginalisation. I couldn’t even begin to fathom the idea of disability pride, because I was still thinking about disability in terms of pain and suffering, rather than community, resistance and radical survival. (Et Lux (also, light), by Robin M. Eames, p.110-111)
There are essays, poems, letters and even graphic art; some are comic while others are angry or poignant. ‘Don’t Have a Bird’ by Sandi Parsons is addressed to her sister, who had cystic fibrosis, and it begins like this, reminding the reader that being able to participate in rites of passage is an expectation that everyone would like to share:
There are so many rites of passage you’ve already missed out on, and the school ball is destined to become another item on that every-growing list. You try to delay the inevitable until every breath from your lungs sounds as if cystic fibrosis is cackling through you. So, with a resigned air, off to hospital you go.
Although you’ve been denied the opportunity to attend the ball, no is prepared to give up the ritual altogether. Instead, your sister Mel, your mum and I, arm ourselves with my ball dress, a curling wand and a bag of makeup. Together we crowd into your hospital room.
We giggle while we do your makeup and curl your hair, then, when you’re finally dressed, we start our photoshoot. You shine with happiness. As the chief photographer I have a most important task: to make sure your bare feet never appear in any of the photos to spoil our carefully crafted illusion. (‘Don’t Have a Bird’, p.113.)
This story also offers one of the most beautiful moments in the book:
I plonk myself onto the couch and force my face into a blank expression. I look you dead in the eye before I speak. ‘I’m not inviting you to my wedding.’
Your arms fold defensively across your chest as you glare at me. ‘That’s not very nice. Why not?’ You are so indignant it’s a struggle not to laugh.
‘Because bridesmaids do not get invited. They are expected to be there.’
You squeal with delight. (‘Don’t Have a Bird’, p116).
I was unprepared for the cruelty of school-girls in ‘Dressing to Survive’ by Jessica Newman-Marshall. I hope those bitches read about themselves in this book and that shame overwhelms them for a good long time.
Isis Holt, in ‘Surprising Myself’, talks about the importance of humour: I think it is so easy to treat disability as something serious and taboo but when it comes to family and people who truly understand the nature of your condition and the way you feel about it, humour makes conversation easier.’
Emma Di Bernardo addresses the issue of resilience:
Resilience is not a virtue you’re born with. Unlike disability, it’s not congenital. Unlike mental illness, it’s not genetic. It’s not diagnosable and it’s not prescribed. It’s sure as hell not on the PBS. It’s something you learn in the face of adversity. Growing up disabled means you experience adversity—whether physical, mental or social. (‘Umbrellas in the Rain’, p.213)
There are so many powerful pieces in this anthology, the best thing I can do is to recommend that you get a copy and read it for yourself.
Editor: Carly Findlay
Title: Growing Up Disabled in Australia
Publisher: Black Inc., 2021
ISBN: 9781760641436, pbk., 308 pages
Source: Bayside Library
ANZ LitLovers LitBlog 
Sounds really powerful, Lisa, and what you say about them not changing the Senate is very telling – there are so many different levels of ability in humans that we need to make things accessible for them all. Thank you for sharing this book.
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By: kaggsysbookishramblings on April 19, 2021
at 1:06 am
It made me wonder… here we have a modern building that should have been accessible only nobody thought about that… but most of what needs to be done is fixable by getting some tradies in to do it. But in places where the parliament is an historic building with heritage overlays, what happens then? We often see footage of the UK and US parliaments on our screens, and it’s obvious that the building is not meeting the needs of the people working there, particularly the overcrowded UK parliament. It made me wonder how anyone contemplating a career in politics the way Steele-John has, might be put off because they can see how difficult access would be.
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By: Lisa Hill on April 19, 2021
at 11:00 am
This sounds really powerful Lisa, thanks for highlighting.
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By: Cathy746books on April 19, 2021
at 1:24 am
It would be interesting if the series were replicated in other countries: I suspect that though every story is different, there would be aspects that would be the same all over the world.
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By: Lisa Hill on April 19, 2021
at 10:56 am
I didn’t know about this series. I’ll look into their other titles
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By: WordsAndPeace on April 19, 2021
at 9:19 am
These are the three that I’ve reviewed so far: https://anzlitlovers.wordpress.com/wp-admin/edit.php?tag=growing-up-in-australia-series
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By: Lisa Hill on April 19, 2021
at 10:54 am
I worked with people with disabilities , from mild to profound, children to adults for 37 years. I saw the whole range and loved it all. The humour, the bullying by others, the coping strategies, their appreciation of what I offered; the way society treats people with disabilities, such a range. The ignorance is rife, the government unhelpful. My life was incredibly enriched by these lovely, inspiring people.
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By: TravellinPenguin on April 19, 2021
at 9:31 am
I taught many children with disabilities, in the mainstream classroom. I now know that it’s a fine line between limiting progress with low expectations, and creating stress by conveying the expectation that they can do whatever it is just like everyone else. No doubt I made many mistakes, but we were never given any training in how to teach children with disabilities and mainly had to rely on what mum had to say about it. Which is why I say that an indefatigable mum is the best asset any disabled child can have. They can be a trial to deal with, because they are usually thinking only of their own child not anyone else, but that’s ok because that’s what the child needs, someone advocating tirelessly on their behalf until they are able to do that for themselves. (I don’t know why it was always mum, but in my experience, it always was.)
The tagline on my professional blog was ‘If students can’t learn the way we teach, we must teach the way they learn’ (Ignacio Estrada, via Tomlinson).
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By: Lisa Hill on April 19, 2021
at 10:49 am
The indefatigable Mum comes up again and again. It came up last week in Australian story when Li Cunxin’s wife cancelled her return to dancing because of their daughter’s deafness. It came up in Jocelyn Moorehouse’s memoir when she gave up her film career for over a decade to focus on first two children’s severe autism. It was there in tonight’s Australian story about the twin girls who work with damaged birds but who from birth have had ongoing medical issues. (In these stories, the fathers have all been supportive but it’s been the mother who has borne the main brunt.)
Anyhow, sounds like another good book from this series.
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By: whisperinggums on April 20, 2021
at 12:34 am
I was thinking, as I wrote about the indefatigable mum, about those Women’s Weekly stories where a woman had given birth to multiples of children, or children #InsertIllnessOrDisability, and in almost every case the father had left because ‘he couldn’t cope’. Leaving the wife to ‘cope’ with even fewer resources than they’d had as a couple. I’m sure there are supportive ones, but I’m also sure that some are contemptible in the extreme….
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By: Lisa Hill on April 20, 2021
at 10:04 am
The whole range I’m sure but those who leave women to cope on their own are just so selfish.
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By: whisperinggums on April 20, 2021
at 2:07 pm
Exactly…
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By: Lisa Hill on April 20, 2021
at 2:16 pm
I like your tagline. I had some very involved fathers but you’re right, mainly mums. I never agreed with children with disabilities being full time in mainstream c,assrooms. The school I worked at in Florida had homerooms for those children and they participated with mainstream children at various times depending kn their abilities. They finished the day with their homeroom. It worked much better than what I saw in Tasmanian schools where too many teachers gave up and let some children just roam around doing what they wanted and not enough aide time. But the American school was much better. Wouldn’t work in the small school I worked in. Teachers received no training and it was pathetic the expectations put upon them. I’ll stop here before I get too wound up, haha
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By: TravellinPenguin on April 20, 2021
at 11:12 pm
Yes, it’s time to let go…
I see stuff about education all the time and it’s hard not to dive in and have my two bobs worth:)
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By: Lisa Hill on April 20, 2021
at 11:22 pm
I understand🐧🌷
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By: TravellinPenguin on April 21, 2021
at 9:43 pm
Working outside I meet very few people with disabilities – depression and bipolar maybe, two or three people years ago when there was still polio around, a couple of workmates who are profoundly deaf, but that’s it. Why we need books like this probably.
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By: wadholloway on April 19, 2021
at 5:04 pm
I think that’s true for the whole series…
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By: Lisa Hill on April 19, 2021
at 6:29 pm
[…] than disappointing for disabled people. I did not realise how much this mattered until I read Growing Up Disabled in Australia, edited by Carly Findlay. I would like to see funding bodies make it a condition of the grants […]
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By: Growing Up Disabled in Australia, edited by Carly Findlay — ANZ LitLovers LitBlog – Thanks For Finding Me on May 18, 2021
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[…] others in the Black Inc Growing Up series, Growing Up Disabled in Australia, edited by Carly Findlay was a book that was illuminating. For me it shone a light on the triumphs and difficulties of […]
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