Carly Findlay: writer, speaker, appearance activist

19 April 2016

The 2016 She Leads Conference will be held on Tuesday 17 May at QT Canberra, with She Leads masterclasses to be held on Monday 16 May. Tickets and program details are now available at

Open to all, the She Leads Conference brings women from a range of sectors, at all stages of their leadership journeys, together with Australia’s most inspiring women leaders. This year, our program explores the theme ‘Transform’ – focusing on stories of personal transformation and experiences from women leaders who are transforming their workplaces, industries and communities.

Here we chat to Carly Findlay, a speaker at the 2016 She Leads Conference. Carly is a writer, speaker and appearance activist. She challenges people’s thinking about what it’s like to have a visibly different appearance. She has used her blog to write about her skin condition, Ichthyosis, as well as to promote causes such as Love Your Sister and Donate Life.  Carly was named as one of Australia’s most influential women in the Australian Financial Review and Westpac 100 Women of Influence Awards for 2014.

Describe yourself in 30 words or less.

I am a writer, speaker and appearance activist. I want to change the way disability and facial difference is perceived and represented in the media. I’m quite resilient.

What has been a significant moment that has transformed your career to date? 

I’ve met lots of people who have the same rare, severe skin condition as me (Ichthyosis) through blogging. Many contact me for advice, to say I’ve given them some hope for themselves or their child with the condition, or to say my writing has made them feel less alone. It’s such a privilege when they tell me their stories because I’ve shared mine. In 2015 I organised and hosted Australia’s first ever Ichthyosis meet, held at the Melbourne Zoo. 75 people attended – 25 of those have Ichthyosis. I coordinated crowdfunding, promoted the event, booked the venue, sourced sponsors to provide gifts for goodie bags, and kept the attendees informed about the event in the lead-up. I asked doctors to do a panel discussion (which I led). This wasn’t a medical event – it had a social focus. For most attendees, they’d never met another person with Ichthyosis before. Advice was exchanged, and strong friendships were formed. It was such an amazing day. I am so proud.

What is a book that has influenced your leadership journey? 

A friend and fellow appearance activist, Rick Guidotti (CEO of Positive Exposure – an organisation which photographs people with genetic conditions) gave me Wonder by RJ Palacio. I visited Rick at his New York City apartment and while I was there, he collected the mail, which contained his copy of Wonder, returned to him from a friend. He passed it on to me and encouraged me to pass it on to someone else. (I haven’t passed my copy on but I worked with a publishing house to ensure all adults and teens received a copy of Wonder at the Ichthyosis Meet.) Wonder is the story of a nine year old, Auggie, who has a facial difference. The book contains perspectives from Auhgie, his family and peers at school. On the first page, Auggie says: “I won’t describe what I look like. Whatever you’re thinking is probably worse.” We never know what Auggie looks like but we get an idea from how he’s treated. I identified with so many of Auhgie’s experiences – especially the discomfort that others felt about being around Auggie. I would have loved Wonder to have been on the school library shelves when I was little. There was no literary role model with a facial difference when I was at school. Kids are very lucky to have Auggie now. While the book was not about women in leadership, Auggie was a great young leader. It showed the importance of choosing kind, and the impact of perceptions and cruelty towards people with facial differences. It was a book I wanted my readers and ichthyosis community to know about.

How does having women in leadership transform our community?

It makes good business sense. We need equality. I’ve been pondering this question all day and can’t think of anything else.

How do you be brave/resilient in situations where you feel uncomfortable?

It’s hard to describe the pain of sore skin. It’s burning, throbbing, restricting, drying and weeping simultaneously, inflamed, scraping, papery, raw. The pain chips away at my emotional armour, making me thin-skinned figuratively and literally. There’s days spent in bed resting at home and having salt baths and Panadol, or days spent in hospital bandaged like a mummy in salty wet compresses hooked up to a drip (I much prefer the former). I don’t sound sick. And my mind still works. And then there’s the challenge of being judged for looking different. There’s the stares, the pointing, jaws agape, stupid questions and hurtful comments. It can be relentless, especially when I just want to get on with my day. I keep my head held high, despite. People asked me how I can be resilient whilst experiencing pain and ignorance. Some have told me they could not face the world if they were in my skin. I’ve just got to continue. This is the life I’ve been given and I’m going to live it to the fullest. It’d be tiring to let the hard times get to me. I’d be lost without a full life. I believe happiness is a choice, and with happiness there’s hope. I’ve chosen to make the best of what may have been a difficult situation. If resilience is a measure of how quickly we bounce back, I could be an Olympic trampoline. “This is just how it is,” I shrug. “I’ll feel less sore soon,” I tell my loved ones who are frustrated for the pain I experience. I know I will have days when I am sore. I always tell myself there is light at the end of the darkness. I’ve come to accept this life – and I’m very happy.

Professionally, I must be resilient as an online writer. Fortunately I don’t receive too many awful comments, but when I do, it helps to wait a while before responding, ensuring I put some humour into my responses, direct them to further relevant reading in an attempt to educate them or provide them with further context, and then switch off the screen and walk away. I also debrief with other online writers – they understand!

Carly Findlay will be a panel speaker at the 2016 She Leads Conference. You can find her work on her blog, Facebook, Twitter and Instagram. Register to attend the conference by visiting the She Leads website, and follow the conference online on Facebook, Twitter and Instagram. 

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