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

Guest Post: Kirri-Mae Sampson: On going home.

"After this, I was hit (like many) with the realisation that I wanted something a little bit different to what I had. So here I am in my final semester of a Master degree that will help me achieve the things I want."

  

Kirri-Mae Sampson

On Going Home: Kirri-Mae Sampson

I had no idea what it was to “squee” over something when Ash first mentioned it to me. Turns out I did though, I just didn't KNOW that I knew. Ya know?

I took a trip north to Brisbane recently and the moment my dear ol’ dad met me at the airport and I climbed into his car, I was consumed by the warm and the fuzzy (the first signs of an oncoming squee). From here he drove us back to his work; he’d just ducked out during ‘smoko’ to pick me up. We pulled up in the car park, he tossed me the keys, gave me a little cuddle and a “Nice to see you petal, pick me up at 4:30,“ and back he went to his work bench. No fuss, and no wasting of words. What a dude.

I jumped into the driver’s seat, checked the tank, it was full. I exhaled happily, plugged in the iPhone, cranked the new Beyonce album…yep….and drove myself home. “Home” in this case, being my parents’ and my family home.

I waltzed in to the empty place with my bags and dumped them in the middle of the kitchen because the pantry is always the first stop. It did not disappoint. Full to the brim. I checked the fridge; same story. This is the part of every visit where I side step between the pantry and the fridge, plates are unnecessary, because fresh produce and snacks go straight from their freshness vessel INTO MY FACE. A couple of rice crackers, some blueberries, a sweet biscuit, a peach, a carrot dipped in hommus, some strawberries, three jatz biscuits. At this point my digits were just not enough so there was a quick pivot to the drawer behind me where I was able to arm myself with a fork (it didn't seem right shoving my fingers into the olive jar) and a knife, because there was BRIE AND CAMEMBERT IN THERE! Then I drank some milk. I don’t even know why. It’s like a crazy frenzied state, and then just as suddenly as it began, I was struck with a slight ill feeling in my belly. I assume that was the result of the outrageous combination of goods that were all hanging out in there together. 

I popped the used utensils into the dishwasher, which had the sign “I'm dirty, load me and wash me” on the front, as opposed to the “I'm clean, empty me” sign. I grabbed my bags and back I went to my old bedroom. While the room has long since been cleared of most things that might resemble my teenage self - a new bed with fresh adult-like linen, empty closet, new side tables and lamps - it would have been much more difficult to erase my beautiful (not really), bold (overpowering) feature wall. The smack of deep bottle green that hits your face when you walk in is the result of a can of paint I received (at my request) for a birthday one year. Feature walls. What were we thinking. I fell back on the bed, and napped the next hour away in some kind of food coma. It was glorious.

All of this bliss took place during the first hours of touching down in Brisbane. This weekend back home rocked and I was squee-ing left, right and centre. And here is why; I (like many) did the student thing straight out of school, then I left it behind (like many) for a few years of full time hard work, and a salary that (almost, but not quite) matched. After this, I was hit (like many) with the realisation that I wanted something a little bit different to what I had. So here I am in my final semester of a Master degree that will help me achieve the things I want. It’s been amazing. I have loved almost every moment of it (there are always a few sticky bits). But along with the study, came the student lifestyle, mi goreng noodles, way too much bread and rice, riding my bike because I can’t afford petrol, taking stock of my household possessions and the ones I could part with to pay rent, etc, etc. We've all been there.

The POINT is going home was rad. I know the weather, I know the roads, I know the people, I know the fridge and the petrol tank will be full, I know that the car has been regularly serviced and will start when I tell it to, I know that my mum will probably book me in for some kind of specialist appointment that I've been putting off, and she might take me to the movies. I know that I will see my brothers and their lovers and we will all give each other shit and laugh, Dad will pretend he is indifferent to my presence but we will know this, in fact, is not the case.

This is all stuff. It’s all great. And it makes me squee.

I also make things. 

Etsy - www.etsy.com/au/shop/kirrimaDe

Facey - www.facebook.com/kirrimaDe

Insta - @kirrimaDe

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[A note from Ash...]

Here are some of Kirri's wonderful creations! She has been super modest about her talents so I felt the need to step in and say something! Be sure to check out her Facebook page and Etsy shop above! 

If any of you are heading to Big Hearted Business this year, Kirri and I will be there so be sure to say hello! Kirri will have a little bag full of her creations for you to buy (she doesn't know that yet but I'll word her up).

x