Speaking with Carly Findlay: Growing Up Disabled in Australia

Growing Up Disabled in Australia is a fresh collection of writing representing voices from across the nation, boldly platforming the experience of living with a disability. 

Available in a range of bookstores since its release on 2 February 2021, along with an audiobook available on Wavesound, the book is distinguishable by its front cover featuring Art Project Australia’s Wendy Dawson’s colourful and abstract artwork.

The fifth book in the highly acclaimed best-selling Growing Up series, the anthology includes interviews with prominent Australians, such as senator Jordan Steele and Paralympian Isis Holt, as well as poetry and graphic art along with dozens of original pieces by writers with a disability or chronic illness.

The following interview with Growing Up Disabled in Australia editor Carly Findlay previews some of the book’s stories and prominent themes while also discussing the growing power and influence of disability-centred writing in Australian literature.

Findlay is a writer, appearance activist, and the author of memoir Say Hello. She has been published in major Australian media outlets and has received an Order of Australia for her work in disability advocacy. 

Listen to interview or read transcript below.

Tahney: Can you tell me about Growing Up Disabled in Australia?  

Carly: It’s an anthology with 46 contributors, including people who are elders in the community and also those who are still growing up. There is a huge range of experiences of disability: people with a physical disability, invisible disability, intellectual disability, mental illness, chronic illness, and people who are deaf. There are many different points of view – readers will get a glimpse into the fact that disability is not homogeneous. 

After writing for Growing Up African in Australia, I pitched Growing Up Disabled to Black Inc., the publisher. 

T: Can you tell me more about the Growing Up series? 

C: The Growing Up series is a books series by Black Inc. based on different diverse groups – such as Growing Up Asian in Australia, Growing Up Queer in Australia and also Growing Up in Country Australia, which should be coming out next year. The series represents a huge intersection of experiences – and even in Growing up Disabled, there are people from culturally diverse backgrounds, different religions and some First Nations people. 

T: It’s a huge book. Once you open it, it’s like a Tardis – so much bigger on the inside in such a compact space. There’s so much to explore in one book. Who should pick it up and why?

C: It is for everybody. When I write disability content, it is for non-disabled people but I hope it’s for disabled people to see themselves and recognise similar experiences. I hope that schools encourage students to read it and it becomes a book on the curriculum. I also hope the medical and teaching professions read it because there are many stories in the book about the difficulties of being medicalised and low expectations around education. 

There’s a story by Chantel Bongiovanni about going to a career fair and the very people who should be championing her having such low expectations of disability that [the teacher] discouraged her from pursuing further study and a broader career. 

I hope people working in the disability sector, who aren’t disabled, read it and realise the capacity of the people they’re working with. 

T: On a more pragmatic level, how can someone approach the book from different access points? Should it be read from start to finish?

C: The book is available in many formats including paperback, e-book, audiobook and – maybe – print on demand for a large print. 

You can pick up the book and read any story. It’s not a linear book and many of the stories aren’t linear: they’re about a moment in time, a moment in someone’s life or exploring a theme like discovering the social model of disability or learning about themselves as a child. 

You could read a chapter per day. You don’t have to read it start to finish but the way I’ve structured the book groups stories together – there’s a few stories about parachutes and umbrellas and astronauts grouped, as well as younger people together and older people together. But you don’t have to read it from start to finish, you can read it as you like. 

T: As you said earlier, disability isn’t a monolith experience or identity. What were some recurrent themes that shaped the character of the book and, on the other hand, what are some themes that stood out to you as unique and spoke to you in a new fresh way? 

C: I got to read the book differently a few weeks ago when I was narrating the audiobook. While I read the book in various forms through the early submissions and the later drafts, narrating it was a whole new experience because I was hanging on to every word, waiting for what would happen next. 

The things I picked up on were the way disabled people have been stuck in or betrayed by the medical system, like how doctors de-personalise or dehumanise a person who’s disabled. I also felt the way people came to identify as disabled was a common theme; Eliza Hull wrote about how she grew up seeing disability as a problem to be fixed and then came to see her disability as part of her identity. Similarly, Astrid Edwards, who acquired a disability in her 30s, explores the idea of disability identity.

The book explores the idea of someone who doesn’t think they’re disabled coming to embracing disability identity. 

In the book, as well, there’s anger in some works, such in Todd Winther’s piece. The other thing I found nice and surprising- but then on reflection, it shouldn’t be given it’s a book about Australia – was the theme of eucalyptus which was mentioned around five or six times in the book. Another prominent theme is the different types of trauma and abuse that people have experienced, such as Jane Rosengrave on growing up in various institutions as a child and a young adult. There are more stories of low expectations and explorations of types of abuse – we are hearing more stories on this with the Disability Royal Commission happening. 

T: You write in the introduction that this is the first book of its kind in Australia. Where does Australian literature and discourse representing disability stand in 2021?

C: I’m seeing many more books by disabled people. Last year we had Show Me Where it Hurts by Kylie Maslen, Katerina Bryant’s Hysteria, Please Don’t Hug Me by Kay Kerr and Peta Lyre’s Rating Normal by Anna Whateley as well as my book that was out two years ago this week Say Hello. There’s a heap of great disabled writers. Chloe Sargeant recently got a column in Junkie on disability and chronic illness. We’re seeing podcasts around chronic illness and disability.

I started a book club with my friend Tash called Disability Reads. We’ve been talking about a new or different book every month. This month’s book is Haben Girma’s biography, who is the first deafblind graduate from Harvard law. 

There are so many books and disabled writers out there – we’re spoiled for choice. But I feel disabled writers can be pigeonholed into only writing about disability.

While we are seeing more disabled writers, I don’t know whether bookshops are more accessible. In promoting this book and my book Say Hello, it’s very hard because I am the editor and the writer and yet I’m advising people on how to make their events accessible. It can be tricky not wanting to put someone off but also saying, “This book is about disability, you should make things accessible for the reader and writers.” 


T: What sort of impact will Growing Up Disabled have alongside these publications? 

C: I hope some writers get book deals out of this and other writers feel more confident to talk about their story. As a side project, I’ve been developing a media guideline for both the media in reporting on this book and also the contributors and telling the story because disability is often reported on really badly. Often stories about disability are not by disabled people themselves and the media is sensationalised and pitiful. I hope that changes and shows that we as disabled people can speak for ourselves and tell our own stories, and be confident that the stories will be reported on well.

I hope people change their perspectives around disability and expectations are raised and we see more people telling their stories because they’ve read this book. 

T: This book is so fantastic in hosting many different voices, especially centring on personalised experience of living with disability since there is still underrepresentation and so much more advocacy that needs to be done. Can we finish speaking on the cover art?  

C: Having a disabled artist involved in the cover art was very important. We looked at many artists work, and Black Inc. went to Arts Project Australia and chose Wendy Dawson’s piece. The book cover is extremely colourful and abstract. It’s very important to me to have a disabled artist on the cover because “Nothing about us without us” is that amazing saying coined in the disability rights movement in South Africa in the 1980s. 

I love the artwork – I dress very colourfully and the artwork is something that I would like to have printed on a dress!  

Wendy Dawson is a painter whose art practice is one of repetition and structure. She produces her work by applying hundreds of linear marks to the paper using paint pens and permanent markers. Employing only two or three colours, Dawson gradually builds layers with these repeated parallel lines, creating an almost knitted quality on the paper and the illusion that the picture is somehow electrically charged. Wendy Dawson (born 1974) has been a regular studio artist at Arts Project Australia since 2008. She’s been included in group exhibitions including Melbourne Art Fair, Royal Exhibition Building, Melbourne and has been featured in each Annual Gala at Arts Project Australia. Her work is held in private collections throughout Australia.

Love from the Studio is a series of interviews and articles bringing you behind the scenes of Arts Project Australia. Carly Findlay was interviewed by Arts Project Australia gallery administrator and marketing coordinator Tahney Fosdike.

The original transcript has been edited for length and clarity.