real life

Carly Findlay: 'When I was a kid, I didn't see anyone like me.'

At Mamamia, every day is International Women’s Day. But this year, we’re celebrating March 8 by sharing stories from some of Australia’s most influential women. You can find all our International Women’s Day stories on our hub page.

As a kid, the only connection I had with disability was that my parents received the handicap allowance from Social Security (two outdated terms!).

I didn’t connect with disabled people I saw, because their lives were so different to mine. I occasionally saw Paralympic athletes in the news (though they were not as prominent as they are now), and I also saw stories of disabled people as tragic and charitable objects on tabloid TV programs.

I hated sport and my parents never treated me as a burden or special. I received $5 of pocket money a week until I was 15.

 

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I love Christmas food! This picture is one of my favourites – Mum and I in the kitchen on a hot Christmas Day, preparing a roast, note the ham and drinks! After the roast, we’d have Christmas cake and trifle. Now our Christmas food traditions have changed – we serve lunch to people at a Community Christmas. Mum helps the chef cook the meal, Dad washes the pots and I go from table to table, talking to the guests. Adam gets in on the festivities too – helping lift the heavy stuff and sorting the kids’ presents. It’s a most wonderful day, giving back to the community. What are your food traditions on Christmas Day? ????⭐️❤️ #ThanksForTheMemories #Ad #SponsoredPost ????⭐️❤️ Image: a vintage photo of little Carly with @jeanettefindlay. A mother and her toddler daughter stuff a turkey on the kitchen bench. Bottles of alcohol are on the bench, and a ham and another hunk of meat too.

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There was one child in my primary school class who was disabled. They walked and spoke differently to the other children in the school, and they received support from a teacher’s aide. I didn’t receive this support, but I was teased just like this child was.

None of these representations of disability applied to me.

Even though I was born with ichthyosis — a lifelong severe rare skin condition — I didn’t identify as being disabled until I was in my mid-20s.

It was then that I realised that, despite us having different diagnoses, we experience similar barriers. Now I know this is the social model of disability: we are more disabled by physical, attitudinal and systemic barriers constructed by society than we are by our bodies.

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The lack of visibility of disabled people and the poor representation certainly shaped how I saw myself.

I started reading Dolly and Girlfriend magazines in my early teens. Mum bought me my first copy when I was 13. She soon saw there was a sealed section featuring a photo of a penis in the magazine, and she banned me from reading them immediately. I sneakily read them anyway through the mobile library and in the newsagent.

carly
"While my peers were hung up body image - focussed on thinness and acne prevention - I was working hard to fight infection and stay out of hospital." Image: Rick Guidotti.

I flicked through pages of models, with doe eyes and smooth, pale skin. They were photographed having fun, hand in hand with their boyfriends, and being active.

In between the photos of articles about how to be more desirable to boys and how to get your best skin ever, were ads for anti-dandruff shampoo.

I didn’t have to wonder if I was beautiful enough — people like me weren’t ever included. My skin was never going to be the best ever, and my scalp was scaly. How could I ever be desirable to boys?

While my peers were hung up on body image, focused on thinness and acne prevention, I was working hard to fight infection and stay out of hospital. I had to dig deep to love myself, because I didn’t feel loved by my peers or by the way magazines excluded people like me.

There’s always been a centring of parent and carer stories, often painting disabled people as 'burdens' and 'tragic', changing the direction of a parent’s life.

I’ve seen articles quoting that parents grieve over their living children, or that they wish their disabled child had cancer. I’ve also had enough of non-disabled authors writing disability as a tragedy, and non-disabled people being awarded for caring for disabled people. Carers get a whole week dedicated to celebrating them. Disabled people get a day.

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Own voices are so important. We need more books written by disabled people, more disabled people on TV and making TV. We need to see more disabled people represented everywhere, and not just talking about disability. I long to write articles that aren’t about disability.

This will change the narrative and how people see us. This will take us from tragic or inspiring.

Right now I’m working with Black Inc on Growing Up Disabled in Australia.

Over forty disabled contributors are included — some high profile people who you’ll have heard of, and many people whose story you need to know.

There are academics and policy workers, politicians and artists, and people now have survived institutionalisation and serious childhood illnesses.

I’m not biased, but it’s the book everyone needs to read.

If I could have read a book like Growing Up Disabled in Australia when I was a young person, my life would have been so different. I would have felt less alone. I would have understood the social model of disability earlier, and I would have had less shame realising my body is not the burden.

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This is why I make a conscious effort to be visible; so little kids can see what’s possible for them, and so they don’t feel as excluded as I did.

I’m so pleased that the media is changing, and through social media, people can both curate their feeds to ensure they see and engage with diverse people, and also to feel part of a community.

Some of the women I love to follow on Instagram include Michelle Roger who creates her own fashion shoots (@michelle_roger), Jeyza Gary (@lyricallydiverse) who has ichthyosis and has just modelled for Target in the USA, Sinead Burke (@thesineadburke) who was the first short-statured woman to feature on the cover of Vogue, Keah Brown (@keah_maria) who started the #DisabledAndCute hashtag, Jessica Emily Quinn (@jessicaemilyquinn) who models for Bras and Things, Melissa Blake (@melissablake81) who continues to post selfies after trolls told her to stop, and Imogen Fox (@the_feeding_of_the_fox) who serves up radical body politics. I also loved Mama Cax, an American model who was an amputee. She died in December. She had a powerful impact on the fashion and beauty industry, and of course, within the disability community.

There’s been a social media trend in recent years: photos of disabled children seeing photos of adults like them in advertising and represented in toys. The wonder and joy on their little faces is gorgeous. They can be what they can see.

A Barbie has just been made to depict wheelchair athlete Madison de Rozario.

These are huge changes; so different from my childhood. Disability is publicly celebrated.

Last year I was on The Project talking about my memoir. A friend sent me a photo of her little boy, a boisterous four-year-old, watching TV. She told me he pointed at the screen “that’s my friend Carly. She has skin like me”.

 

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Representation matters. This is my little mate Chaz. He is four and has the same type of ichthyosis as me (Netherton’s Syndrome). Last night he saw me on @theprojecttv. Chaz’s Mum @caseyl24 sent me this first photo with the caption: “I asked Chaz who it was. He goes, ‘Carly that has same skin as me’. Then he adds at the end, ‘she was born that way like me’. Oh my heart, couldnt be more proud.” . . Me too. I’m proud. I’m so glad he can relate. I would have done well to see an adult with ichthyosis talking being proud about having ichthyosis on national TV as a kid, even if I didn’t fully understand. Overnight a few adults with ichthyosis have written to me too, to tell me they too have ichthyosis and felt alone until very late in life. . . What a privilege it is to be reaching so many people, letting them know they’re not alone and encouraging them to be proud of their skin and appearance. It’s my goal to do media this year where I’m not just talking about me and my appearance, I’m talking about all types of topics. I’d love to be a regular panelist on a TV show, where disability is incidental. . Thank you ???????? Images: 1. A small child watching me on TV. His back is to the camera. 2. A small child with his mum and me. (Pics and quote shared with Casey’s permission)

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I’ve been getting lots of emails and messages from people with ichthyosis and skin conditions and also parents, writing to tell me my words have made them become more confident, and are a resource to pass onto those who they encounter.

I got a message from a woman in her late 40s with ichthyosis in America who wants to write her own book. She downloaded my book, and later wrote to me, “So I am listening to your audiobook and I had to pull over and send you this message. I want the outlook that you have. I am currently listening to the chapter about not apologising for my skin. I am 48 and still so self-conscious about what I call SNOW. Aka my skin. I am in counselling trying to reframe my thinking and heal from various traumatic experiences I have had related to my skin. I am making progress but right now I feel tolerated by others ... never wanted. I just had to pull over and tell you that your words are speaking to my heart and making me stronger. Thank you Carly!!” I look forward to reading her book!

Another friend told me, “I met my midwife today and she was excitedly telling me that she knew about ichthyosis because of 'this awesome woman who is on podcasts' - you. She was super impressed when I showed her my personalised copy of Say Hello!”

And a mother of a baby with ichthyosis posted in a support group that I run said, “Carly Findlay, I’ve been meaning to write to you for a while, but life is so busy. I just wanted to say THANK YOU. I’ve spent a lot of time explaining everything that happened post my daughter's birth in July and what ichthyosis is etc. Almost every time I’ve said the word 'ichthyosis' I’ve had the response back, 'oh yes, like Carly Findlay!' They have seen you on TV or follow you on Instagram or have seen you speak. It makes it so much easier for me to not have to go into all the exhausting detail every time. Thank you for helping to spread the word about ichthyosis. Thank you for helping to advocate for our kids! It means a lot.”

I do this work for them. I want to change the way ichthyosis, skin conditions, facial difference and disability are seen in the media, so they know they belong and are perfect just the way they are.

Carly Findlay OAM is a writer, speaker and appearance activist living in Melbourne. She’s written Say Hello and is editing Growing Up Disabled in Australia. You can find out more or pre-order the book, here

Mamamia is funding 100 girls in school, every day with our charity partner Room To Read, and our goal is to get to 1,000 girls every day. To help empower women this International Women's Day, you can donate to Room to Read and make a difference in girls' futures.

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