Carly Findlay refuses to let her skin condition dampen her spirit.
The 20-something blogs, studies, works, presents TV, and fights discrimination against people with disabilities.
Have you always identified as someone with a disability?
No. When I was younger, never. But when I started mentoring young people with chronic illnesses at the Children’s Hospital in 2008, I realised that I do in fact have a chronic illness. My skin condition, ichthyosis, is a lifelong illness that affects me every day. The social challenges I’ve faced with ichthyosis are the same sorts of barriers as my friends with much different disabilities face. So I think it is both a chronic illness and disability.
What are some of the main ways your life is different to other women your age?
I live a very active life and haven’t let ichthyosis stop me much.
I do get tired and often get very sore from skin infections. These infections can put me in hospital – and I there I have bandages and IV antibiotics. Fortunately hospital doesn’t happen too often but I have been quite sick this year.
Daily I use Vaseline over my whole body – everything I touch is very slippery! I also have to keep warm and ensure I don’t overheat (tricky), eat enough to keep my energy up and keep out of the sun and wind as much as I can. I attend dermatology clinics every month or so – my team of dermatologists are great and give me medical and emotional support.
The social challenges are difficult – I am stared at and questioned about my appearance every day which gets tiring. People are often quite rude too – rude when asking about my appearance or when they point out how red I am.
It can be hard to meet men because of course first impressions count, and my redness can be a barrier to getting to know me.
There are upsides though – no body hair, I eat like a lumber jack as my body burns it off very quick, and I have often been treated very well by people in high places – I recently caught the eye of the Kings of Leon security crew at their concert. They gave me a heap of stuff – drum sticks, guitar picks and the set list! They wrote to me after seeing my blog and said they saw me rocking out having a great time!
You blog, you work full time, you freelance, you study. Is there a secret to how you stay motivated?
And I also present on community television!
I have immersed myself in doing things that I love, so that really helps stay motivated. I love my day job, writing and TV work. I do a lot of stuff and still fit in time to socialise and cook (and sometimes clean the house – hi Mum!) and of course maintain my health.
Maybe I do so much to prove that I’m not just a red face, and also because there’s so much opportunity out there! I haven’t dedicated my time to study as much as I’d hoped to this semester but I aim to finally finish my masters of communication next semester. My thesis is about blogging and chronic illness – I should be able to do it with my eyes shut!
I make a lot of to do lists. And I write a lot while sitting on the couch watching TV. And would you believe I write whole blog posts by texting into my iPhone while on the train or in the hospital waiting room! (This interview has been done this way – on the train!)
What’s the main message you’d like to get out there this International Day of Disability?
People in the disability community are doing great things to provide education to the wider public, peer support within the community, and to show that people with disabilities are strong, driven, intelligent and funny. I have made some amazing friends through my work in the disability community. Social media has helped people with disabilities connect and spread positive (and real) messages. It’s good to have the platform to tell our own stories without the media creating a negative or pitiful perception. Sure things have been hard for me but I’ve had so much fun and so many opportunities have come my way because of my chronic illness. It is a bit of a blessing.
You’ve become a bit of an ambassador for people with disabilities. What’s your ultimate goal?
My goal is to branch out in the writing and speaking world and through this, educate people about chronic illness, disabilities, diversity and acceptance. I want to influence the way people perceive disability. I may not be able to stamp out discrimination worldwide. But I could make someone think twice about commenting on someone’s appearance or ability
I don’t want to be a perfect role model, I want to be a real role model – to demonstrate that people with chronic illnesses and disabilities are, as much as I hate the cliche, just like everybody else.