Congrats on the release of Growing Up Disabled in Australia! How did you come to edit this anthology?

Thanks! I was asked to write for Growing Up African in Australia, edited by Maxine Beneba Clarke. On the same day I said yes to her, I pitched this book to my agent, who then pitched it to Black Inc. And they said yes!

What did you learn from the process of editing?

It was an honour to read and select and edit so many amazing stories. They taught me so much—the diversity of disability, and also that there are so many commonalities disabled people have experienced due to barriers and attitudes (the feelings of needing to be “fixed” and then coming to realise that we don’t need to change our bodies or minds; the world needs to change to accommodate us—that was a strong theme). While I think there has been some progress in disability rights and inclusion, we still have a long way to go—especially in areas of employment and education, as evidenced in some of the stories.

I’ve learnt to take care of the writers—both those successful in being selected for the book, and also those unsuccessful.

For those unsuccessful, I carefully wrote a letter advising them of the outcome of their submission, encouraged them to keep writing, gave some suggestions of where to pitch their stories and linked them to support.

For the successful writers, I’ve worked on media and event contributor kits to prepare them for promoting the book, and set up a Facebook group where they can connect and share successes.

I also learnt how to be oh-so-flexible in a global pandemic.

There is such a diversity of lived experiences in the book, as well as artistic forms (prose, poetry, interviews, letters, illustration…). In the intro you say you took an intersectional approach to curating. Why was that so important? 

It was important to me to broaden the perception of disability. Disability and the experience of disability varies so much. I also wanted to showcase a range of ways people told their stories—this also demonstrated accessibility for the contributor. I interviewed Jane Rosengrave, an intellectually disabled Aboriginal woman, for example.

We tend to only hear from white disabled people, and so I wanted this book to reflect the diversity of Australia—Aboriginal people and people of colour are prominent; as well as people from the LGBTIQA community, and Jewish and Muslim communities.

What do you hope readers take away from the book?

I hope disabled readers and writers feel a sense of connectivity—to the stories and to the disability communities in a broader sense.

I also hope it gives people with impairments and who experience disabling barriers, but who aren’t quite sure if they can call themselves disabled, or feel like an imposter, to give themselves permission to identify as disabled and feel a part of the disability community .

And I want non-disabled people to see disability isn’t homogenous, that we are a very diverse group of people, and to raise their expectations of us.

Systemically, I hope the disability sector as well as the medical system and education system takes note of these stories and implements changes, so that the discrimination and segregation written about in Growing Up Disabled in Australia is not being perpetuated in five, ten, twenty years time.

And I hope the publishing industry becomes more accessible, and we see many more books following this one—especially books from the contributors.

In your memoir, Say Hello, you share your life story, including your journey to disability pride. How did sharing your own story impact your life?

It helped me connect with other people who have ichthyosis, skin conditions and facial differences, and also disabled and chronically ill people. I have learnt—and am still learning—lots about the diversity of disability and access needs. And it’s definitely propelled my career!

The thing that means the most to me is when other people who have ichthyosis, skin conditions and facial differences, and also disabled and chronically ill people, tell me that through me sharing my story, they’ve been more confident to tell theirs (even if it’s just being more honest with themselves about disability identity and pride); and also seeing people become more confident in advocating for themselves and others.

Your career as a writer started with a blog, and has blossomed into so many different areas. What have been your career highlights?

Editing this book for sure!

Speaking at the Sydney Opera House about beauty, which led to writing for CNN.

Releasing Say Hello.

Being part of an accessible and inclusive change in the arts sector.

Most importantly, being someone who offers hope and amplifies voices for people with facial differences, skin conditions and disability who feel alone; and when parents of disabled children write to me to let me know I’ve changed the way they see their disabled child for the better.

You are known to be a bit of a fashionista as well, and made history organising the Access to Fashion event at Melbourne Fashion Week in 2018. Where did your love of fashion come from?

Thank you! My Mum is a smart dresser (a term my Nanny would have used). She always looked immaculate when she was a young mother; and now too. And she dressed me up too. There’s a series of preschool photos of me—I’m using a wooden telephone, as well as writing with crayons, and I am wearing a blue pinafore and a white pussy bow blouse. Definitely dressed for the job I wanted! And here I am.

I had a bit of fun as a kid with bell sleeves, velvet shirts, denim skirts and Doc Martens. I really liked Clueless and took inspo from that when I was 15.

But for a long time as a teen and young adult,  I didn’t want to stand out more than my red skin made me, so there’s no way I’d wear bright colours or sequins. I’d wear brown and grey, and suits.

And then in my 30s, around the time of my wedding actually, I burst into colour. I saw my redness as an accessory. I stopped hiding. I wore a bright floral jacket at my wedding - the whole theme was based around that print actually! I incorporated colour into every day—especially when I left my conservative job and started working in the arts in 2016. And through dressing brightly, I found a whole new group of friends, who also love colour. Recently I got some online trolling - I believe in outing the trolls to share the burden. They commented on a photo of me dressed in an orange floral dress next to a unicorn sculpture. They said I looked like I “was puked on at a kid’s birthday party”. Ha!

What books have you been loving recently?

I am really proud to have read 100 books last year—mostly due to being at home during lockdown. I listened to audiobooks, mostly. I loved Chanel Miller’s Know My Name and Luan Goldie’s Nightingale Point. My friend Tash (@jouljet on Instagram) started #DisabilityReads—an Instagram based book club where we read and review books by disabled people. I loved the Disability Visibility anthology, edited by Alice Wong, Hearing Maud by Jessica White and also Unseen by Jacinta Parsons.

Most recently, I loved World of Wonders: In Praise of Fireflies, Whale Sharks, and Other Astonishments by Aimee Nezhukumatathil [forthcoming, released in Australia in June 2021]. It’s a memoir with a lot of nature writing in it, and the writing is STUNNING. I took it slow listening to it because I didn’t want it to end!

What are you up to next?

My speaking gigs are returning! Travel again! I hope. I don’t want to jinx it.

I want to write a kid’s picture book. I am working with an illustrator on this.

Also, conquering how to do a spin on my rollerskate—that was an unexpected hobby I started towards the end of COVID lockdown and it stuck! My progress is slow but I’m proud of how far I’ve come!

Find Suzy’s review of Growing up Disabled in Australia on our Books We Love page.