Welcome to the first of a series of interviews with fascinating and inspiring people. Today, I’m so happy to bring you activist , writer and speaker Carly Findlay. Carly is smart, funny, curious and thoughtful: a good egg all round. For me, reading about and connecting with interesting people is like a vitamin shot to the imagination. I hope the irrepressible Carly Findlay gives a little jolt of energy to your day too.
Hi Carly! You are an advocate and public voice for people with visible difference, but you have said that you would like to educate people ‘on your own terms, not just walking down to the shops.’ Would you educate us now? What would you tell people about the skin condition ichythosis? Is it common in Australia? What’s it like to live with ichthyosis?
I have a rare, severe and lifelong skin condition called Ichthyosis. It means scaly red skin. It can get very sore and itchy, and sometimes I have to go to hospital for dressings and antibiotics to heal infections. I manage it on a daily basis by using a mix of paraffin to moisturise my whole body. I also take antihistamines to stop the itch. It can be socially challenging, with people staring, commenting and ridiculing my appearance daily. I manage that ok too – I don’t notice the stares so much now.
Ichthyosis is not common – approximately 20 people per million have the condition, and there are over 20 variations. In May 2013 I showcased 34 people affected by Ichthyosis around the world – patients, parents, grandparents, friends and a support group leader, plus a nutritionist, my parents and me. It was wonderful giving people a chance to tell their stories – many had not told their stories before. Some told me that reading my story and others had empowered them and made them feel more confident in embracing their appearance and chronic illness. You can read the Ichthyosis Awareness Month series here.
I’ve met a few people with Ichthyosis – here and overseas. Living with Ichthyosis isn’t too bad. It does hurt but there’s not much I can’t do, and I push myself pretty hard – I’m always on the go. I work full time, I see bands and hang out with friends. It can get me down if I am sore for a long period of time, but I’m emotionally stable with it.
‘Emotionally stable’ is a great aim for us all, I think… ‘I’m resilient’, you have said. ‘But I should not have to be resilient all the time. I should not have to put up with or rise above or let it go. I should have the right to get on with my day or night without strangers… intruding on my privacy, questioning my appearance and making judgements on first sight.’ You went through an awful episode recently where a taxi driver abused and insulted you. Personally, I liked that you graciously encouraged the taxi company to improve their diversity training, and also that you appropriately told the driver: ‘fuck you.’ Your friend Tash has referred to ‘the Chinese water torture that is the constant drip drip drip of abuse and horrendously thoughtless comments.’ How do you cope with the public response to your visible difference, and how do you deal with everyday arseholes without it starting to make you crazy?
The public response does get tiring. I don’t notice the stares too much, but if something like the taxi driver incident happens, or the time a man in a pub told me how scary I look, or the time a lady told me to leave her store, that can shake me a little. Writing a blog helps think it all through. I’m usually pretty polite when answering questions – I’m happy to talk about it, but I would prefer it if people say hello before launching into questions about my appearance. People are pretty intrusive and I’ve stopped being surprised about the types of things people say about others’ appearances – to their face and behind their backs. However, I’ve met some wonderful people because of my skin, it’s taken me places and got me noticed. And I’ve made great friends through taking part in diversity related activities. The wonderful people definitely outweigh the nasty ones.
I love your thoughts on the ‘knowledge imbalance’ for bloggers. Can you explain that a little bit?
As a blogger, I reveal a bit about myself – and readers get to know me through my words. They know a lot about me. I know some of my readers – many are good friends who I have either met through blogging/social media or existing friends. But I don’t know all of my readers. They know a lot more about me than I know about them. At the Problogger Event, so many people felt like they knew me, and we realised we hadn’t met in person until then, only knew each other through social media! I am also not great at recognising faces and so when someone recognises me, I always have to ask who they are!
You’ve been blogging for years now. Years! What are your thoughts on how the landscape has changed? Are you more of a Twitter or an Instagram lass? Words or pictures?
I think the blogging world has moved from solely online to online and offline. Friendships are formed. People outside the blogging community get blogging. It’s a valid form of media. Many of my blog posts have been published in mainstream media – it’s a great way to build a portfolio. But there’s also a bit of comparison – and comparison is the thief of joy. Bloggers measure themselves against other bloggers and I think that can be disheartening. Run your own race. Monetise if that’s right for you. Don’t expect money and free stuff to come to you in the first month of blogging. Blog for the love and for the friendship. . I love Twitter and so many of my opportunities have come via Twitter! Getting to speak at a university in England and being published on The Guardian website are two highlights that have happened because of Twitter
I am an Instagram convert. I didn’t used to like the whimsical filtered 1970 style pictures – couldn’t see the point! And then I downloaded the app and became addicted! I love taking pictures of things I see in my daily life and then using those as inspiration.
I really, really relate to your ability (ahem, skill, in fact…) to talk about several things at once and change topic out of nowhere. I love that ‘tune into radio Carly’ became a good-natured insult about that. I’m the same: perhaps blogging is a great outlet for that kind of brain? So Carly: can you talk about five unrelated, irrelevant things that you’re into at the minute?
Haha thank you! Five unrelated things: I have a cleaner – she comes once a fortnight and does the floors and bathroom. I tidy before she comes. I have booked a trip to America and Europe, departing in March 2014. I no longer read books regularly. But I do read a lot of magazines – my favourites are Lucky Peach. Oh Comely, The Collective and Frankie – mags that make readers be the best they can be, not try to mould them into a celebrity lookalike. I also read a lot of online media. I have an Internet fatigued concentration span now! I’m really good at live tweeting events. I summarise key points in 140 characters. Can someone please hire me? My favourite songs in the world are: Bob Evans – Hand Me Downs Darren Hayes – Darkness and The Siren’s Call Savage Garden – The Lover After Me Kings of Leon – Fans U2 – Who’s Gonna Ride Your Wild Horses? Genevieve Maynard – Pillar of Salt Silverchair – Miss You Love Pink – Who Knew Angus and Julia Stone – For You.