As a writer, speaker and self-proclaimed ‘appearance activist’, Carly Findlay is building a career by striving to change the way people view people with facial differences, skin conditions, and disabilities.
In 2009, Findlay started blogging about her own experiences living with ichthyosis, a genetic condition that causes dry, red and scaly skin, and that leaves her susceptible to infection. While she had been writing professionally already, that blog marked a turning point in her career.
“That really changed the way I wrote, and my focus area then became on writing about life with ichthyosis and other people’s disability experiences,” she explains.
“It helped me identify as becoming disabled. Even though I had this condition my whole life I didn’t really know any other people with ichthyosis, or even other disabilities. When I realised we had a lot in common, and realised the social barriers were very similar, I came to identify as being disabled.”
Soon, people started to come across Findlay’s work, and she started being invited to speak about diversity and disability. Now she works full time writing, speaking, training and mentoring, while also working as an access and inclusion coordinator at Melbourne Fringe. Because, you know, it’s good to have a stable income, too.
Last year, Findlay released her memoir, Say Hello, about her experiences with ichthyosis and how to talk to kids about people with social or facial differences. The book’s implicit goal, she says, is to teach people with facial differences “how to love yourself”.
She now edits Growing Up Disabled in Australia, part of the ‘Growing Up’ series from Black Inc, expected to be released later this year.
It’s taken a long time. I worked for the government for a long time — for 14 years I think — and when I did, I found it really hard to be real about my identity. I felt like we weren’t allowed to talk about my disability, even mention it, and if I did it would always be relating to needing time off work to go to hospital.
I felt like the expectations of me were quite low. I didn’t receive many promotions, probably because of unconscious, or very conscious, bias. One of the excuses was that I couldn’t write for a big enough audience when I applied for a job in communications. I was writing for The Age and the Sydney Morning Herald.
Now that a lot of stuff is based around my own brand (although I find that a weird term), I feel like I can be who I am.
A lot of the stuff that I do is because I’m disabled: I have that lived experience, which is really great. I’m very very public about my health online, and if I can’t make a deadline because I’m unwell, generally I’m very open about that. The editor probably would have already seen that I’m not well on my Facebook or my Instagram.
It can get a bit tiring, because I’m constantly living this thing that I’m writing about. I write a bit about discrimination, towards me and towards others. If I’m abused by a taxi driver (e.g., he doesn’t want me in the car, etc.), I might write about that on social media. And then I have to endure the Devil’s Advocates, the people telling me, ‘Oh of course this happened,’ or ‘He didn’t know about your face’, or ‘Perhaps you’re overreacting’.
There’s that double level of ableism endured.
There’s also the pressure to help other people — and I understand I have a duty to — but I’m literally just one person. I hope I’ve created enough resources, or put people in touch with resources to help themselves. But there’s the expectation that I’m always on call, always needing to be responsive, so that can be tricky.
I’ve also been really vocal in asking to get paid for things. A lot of the time people in the arts are expected to work for free, and it’s doubly problematic for disabled people. We’re often seen as charitable — we’ve been relying on charity for many, many years. So businesses think they’re doing their good will; that they’re doing some kind of favour to disabled people by asking them to work for free.
It can be really hard to talk your worth. One of the reasons I demand payment is that I want the wider disability community to receive payment. If I say yes to working for free, then the next time a company asks a disabled person, it will be based on my perceived lack of self worth.
I really like it when I get asked to write articles and do the work about lived experience. It’s around making space for our voices, it’s around appointing someone who is disabled as a guest editor of a blog, or paying us to do work, or getting us in to speak.
But also, it’s about getting us to write about things that aren’t related to disability — not just ticking a diversity quota, but making sure you get us to speak on lots of different things.
It’s also calling out your friends when they use disability slurs or casual ableism. Just saying that’s not okay, or talking about the need to talk about disability in a better way.
Finally, one of the really easy thing people can do — and everyone, not just business people — is follow a bunch of disabled people on social media. Social media is a really good way to curate your life, so that’s a good start.
Not making us disclose our condition for no reason, but understanding access needs. We don’t have to tell you why we need extra time to get ready in the morning. We don’t need to tell you why we’re in hospital. We need that level of trust.
Also, don’t burden us on approaching everything about disability. At my Melbourne Fringe role I’m in a specific role about access, but I’m not always called upon to do the work, because it’s expected that access will be embedded across the organisation. I appreciate that.
But, elsewhere, I get a lot of questions about how to make an event more accessible, when I’m the one speaking. The information is there, on the internet. I shouldn’t be the one doing all the work.
I have so many! Basically, just don’t forget us. When we talk about domestic violence, there are really high statistics around domestic violence towards women with disabilities.
It’s just about reading about the issues and understanding what issues affect us. Don’t expect us to do all the work.
I get a lot of people messaging me to say, ‘Have you seen this?’ If it’s an article about disability, and generally I have. You can share that with your audience as well.
I did a speech on how to be a good non-disabled feminist, which you can watch here.
This article is part of SmartCompany‘s special IWD 2020 edition. It was commissioned and guest-edited by Culture Amp’s Aubrey Blanche.
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Aubrey Blanche-Sarellano is the founder of The Mathpath and the vice president of equitable operations at Culture Amp.
