Carly Findlay :: Ichthyosis Awareness Month :: Why YOU should care

Pic by Rick Guidotti

Today we are lucky enough to hear from the effervescent Carly Findlay. Carly is a Melbourne based writer and appearance diversity activist who is currently spreading the word about Ichthyosis Awareness Month and she has been kind enough to answer some questions for The Squee.

WHY IS ICHTHYOSIS AWARENESS MONTH IMPORTANT TO YOU?

I was born with a lifelong, severe and rare skin condition called Ichthyosis. It means scaly red skin. It's medically and socially challenging - with sore itchy and dry skin, occasional hospital stays and lots of staring, questions and comments from strangers.

I blog to raise awareness of what it's like to look different. Blogging has allowed me to reach out to the Ichthyosis community as well as inform those who know very little about the condition, and also be published more widely. I also speak about my condition and consult on blogging and self advocacy through storytelling.

Last December my photo was misused on the content sharing website Reddit (http://carlyfindlay.blogspot.fr/2013/12/how-to-win-internet-or-how-to-defend.html). My photo was ridiculed and diagnosed by hundreds of strangers. While not a pleasant experience, I took to the site and write a response so the ridiculers would see the real me. I directed them to my blog and, you know, some of these people who clicked on my photo to gawk said they learnt something and developed compassion. The Reddit situation showed me just how powerful blogging can be, and I wanted to give the same chance to others affected by Ichthyosis.

Through the whole month of May I will be featuring guest posts on my blog from people affected by Ichthyosis. There are more than 30 stories this May - from patients, parents and grandparents, partners and even a non-human!

I have created a video for the Blog Project, where I encourage people to celebrate their uniqueness: http://youtu.be/-9wu_G8WfrU

Sharing these stories on my blog gives people a platform to be heard - without sensationalism and without pity. Their stories in their own words raise the expectations of people who look different. The stories show strength, challenges and triumphs, life change, a 'normal' life lived, self acceptance and hope. The condition affects 20 people per million, and there are more than 24 types. These stories through May will show you the sheer diversity in symptoms, appearance and treatment.

The Ichthyosis Awareness Month Blog Project also empowers the contributors. Jaime, a contributor from last year, told me: "I was diagnosed with Ichthyosis Vulgaris about 3 1/2 years ago...I love what you do. You helped inspire me to come 'forward' into the public and actually reveal my secret. I used to be ashamed of what I have, but now I'm ready to embrace it. I hope to connect with others who have Ichthyosis too…".

I've met amazing people working in appearance diversity fields - the staff at Centre for Appearance Research, Changing Faces and Rick Guidott

Sharing stories brings people together. Since last years IAM Blog Project, I've met - virtually and physically - many, many people with Ichthyosis. I am currently travelling overseas. So far, I've met Larisa, Carolyn, Mellissa, Michael, Aurora and Matthew, Kallie, Evan and Dianna (top left to bottom right).

WHAT CAN WE DO TO SPREAD AWARENESS?

You can follow my blog - carlyfindlay.blogspot.com and read and share posts. I'd love this to reach people outside of the Ichthyosis community as much as those in it. All of the posts are located HERE.

I'm also sharing links on my Twitter (twitter.com/carlyfindlay) Facebook (Facebook.com/tune.into.radio.carly) and Instagram (Instagram.com/carlyfindlay).

GET INFORMED PEOPLE!

Appearance diversity is about more than just shape and size. It's about different faces, different appearances being present in the media. We see so many homogenised images of people in our magazines and on screen - and there's a beauty ideal, and I want to change that.

A few years ago my blog was discovered by staff at the Centre for Appearance Research in the UK. They asked me to speak at their conference. You can read my speech here: http://carlyfindlay.blogspot.co.uk/2012/07/couldn-handle-looking-like-you.html

Also see changingfaces.org.au and positiveexposure.org

ANY MORE WORDS OF WISDOM?

Before you ask why someone looks different, say hello! It's the polite thing to do