Challenging People’s Viewpoints

A blogger, writer, speaker and appearance activist living with Ichthyosis, a rare skin condition, Carly Findlay has made it her mission to challenge people’s thinking about what it’s like to have a visibly different appearance. Findlay is this week's Changemaker.

I’m always being asked …

Why I look the way I do. I have a red face and scaly skin due to a rare genetic skin condition called Ichthyosis. It affects 20 people per million. I was born with this condition and there's no cure. It is painful and itchy and it attracts many questions and comments from strangers – sometimes rude ones.

And so I started telling my story on my blog to educate people and tell my story on my own terms, reducing the sensationalism and exploitation of medical stories commonly being told by mainstream media.

My blog has led to writing and speaking opportunities. I also share experiences on social media.

I blog at carlyfindlay.blogspot.com, tweet and Instagram @carlyfindlay and Facebook atFacebook.com/tune.into.radio.carly

What has been the most challenging part of your work? And how do you overcome that?

Being an online writer means that there's a wide reaching audience. And readers only get to know part of me. For the most part, readers are amazing – supportive and encouraging, and many of them have become close friends. But through putting out writing and pictures on the Internet comes criticism. When I write about difficult social experiences (for example, rude questions and comments about my skin), I have been told that I should just take this gracefully or that I'm too defensive. My photo was mocked by hundreds of people on a large website last year – I turned that negativity around by responding to the comments – and this made international news. Most of the time I ask myself whether I value their opinion and remind myself that the critics only know me through the 500 or so words they've read from me.

I consider my greatest achievement to be …

Blogging has launched some amazing opportunities for me. I’ve written for publications such as The Guardian and ABC, spoken at events including The Melbourne Writers Festival and Appearance Matters at the University of Western England and won several awards (most recently named in the Australian Financial Review and Westpac 100 Women of Influence for 2014).

Above the writing, speaking and awards, I'm more proud of the impact my writing and speaking has had on people. I receive messages from readers who are struggling with their appearance, or a new parent to a baby with Ichthyosis, telling me that my story has made a difference to them. Readers tell me they felt alone until they found my blog and can now see some hope for themselves or their child. They have also told me that because of my story, they're confident to tell their story about Ichthyosis to their families, friends or wider communities. I have met many people affected by the condition and was lucky enough to stay with some people overseas that I'd met through my blog.

I'm also proud to have helped make a difference to taxi driver training. In 2013 I was discriminated against by a taxi driver because of my skin. I wrote about this on my blog, took the case to the Human Rights Commission and made a complaint to the taxi company. One of the outcomes I wanted following the complaint was for improved disability training for taxi drivers – to show the diversity of disability. A video was made for the taxi company with my input.

What are you reading/watching/listening to at the moment? Why?

I read Dark Places and Sharp Objects after seeing Gone Girl at the cinema. Those books were scary yet unputdownable! I've also got an advanced copy of Love Your Sister by Sam and Connie Johnson – I've shared their story on my blog since prior to the launch of the Love Your Sister unicycle ride. They're amazing, generous and courageous people.

I also love podcasts – I regularly listen to Radio National's Life Matters and 360 Documentaries, This American Life, some writing podcasts and a few food ones. I was lucky enough to chat to Darren Hayes on his podcast earlier this year – I've been a fan of him and his music for 17 years, so I was beside myself when he took my call for the podcast! I'd like to start a podcast next year!

Through your work, what is your ultimate dream?

I'd like to write a memoir. I received a mentorship at Writers Victoria last year and have planned the memoir structure, but it's just finding the time to write the content!

I am planning a meeting of Australian Ichthyosis patients and families. There are many support groups and meet ups overseas but hasn't been a big meet up in Australia. I am working on making this happen next year.

I'd also like to influence appearance diversity in the media. We need to normalise difference so society get used to seeing people who have facial differences and disabilities. The media can start this through increased inclusion of diverse appearances in magazines, advertising and screen. Fortunately blogging and social media is at the forefront of this.

What does a typical day for you involve? 

I wake up around 6.30, I check my social media feeds and the news in bed. If I have a blog post scheduled for the day, I post links to it on my three social media platforms. I read what people are saying on Twitter during the short train trip to work. If I have writing ideas, I will jot them down into my phone to review later. I do my day job – mostly 9-5. When I get home, I talk to my fiancé, cook dinner with him, then watch The Project while we eat.

I usually respond to emails and write blog posts, articles or speeches for an hour or two most week nights – with the TV on. If I am not writing, I find interesting things to share on social media – articles, create my own inspirational quote memes or source old blog posts – and schedule these. I also take the time to respond to comments received on social media. On the weekends, I like to batch write blog posts – I spend three or four hours on a Sunday doing this, or on a Friday night over few glasses of wine. And sometimes I just do nothing!

My greatest challenge is …

Fitting it all in. I work my full time day job and write, speak and do social media stuff around my day job. I don’t outsource the admin, but I think I should! I'm planning my wedding too!

Where do you feel your passion for good came from?

There weren’t blogs or social media support groups when I was younger. My parents and I learnt how to manage it all on our own. We lived in a regional city and had to travel four hours or more to get medical or social advice about Ichthyosis. I hadn't met anyone with Ichthyosis until 2007. With the advent of the Internet, our experiences can be shared. I want to tell my story so others feel less alone. It's nice to be able to show a new parent, overwhelmed with the challenges of a tiny baby with Ichthyosis, that life is going to be difficult but it will be ok – fantastic even! I also write to help me understand myself better, and to work through the difficult times through words.