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

Elsie and Joan's Motherhood Project

I was lucky enough to catch up with Belinda from Elsie and Joan on the weekend to chat about what it's like to me a mum. I'm sure you're interested because I am such a riveting person (ha!) so head on over (click the pic and it will take you there) and have a look-see.

Belinda is currently working on a beautiful year long project celebrating motherhood and is seeking more participants! 

If you would like to get involved please visit her page 

www.elsieandjoan.com

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

A Squeeky chat with Kathryn Ledson - Melbourne author and my Aunty.

Today I'd like to introduce you to Melbourne author (and my fab Aunty) Kathryn Ledson. Since The Squee is all about celebrating hard work, creativity and being generally excited about things, I couldn't wait any longer to brag about my talented Aunty and her two recently published hilarious crom/rom/com fiction books!! (Nothing like a little "neppa-tiz!" - a School of Rock reference if you're not familiar)

I asked if Kath wanted to write something for me to share here but she turned up her nose and said "can you just ask me stuff? I'm better at that"

So here goes!

Enjoy!

_______________________________________

Can you tell me a little about yourself, and your path to becoming a published writer?

If I think about where it all started, I’d have to say as far back as 1986 when I had a conversation with myself along these lines: ‘Kath, if you want certain things in your life, YOU have to make them happen.’ I was terrified, but went ahead and left my (brief, unhappy) marriage, secure job of 6 years, Melbourne and all my family (including a very cute little niece) and got a job on Hayman Island. It kind of went from there. I’d find myself saying, ‘What next?’ Leaving the corporate world for good and returning to school to do a writing course was just part of that whole process, but I didn’t for a second think I’d be writing a novel! Or two.

Rough Diamond (published by Penguin) was your first novel. For those who have not read it, can you give a little bit of a plot outline without giving too much away?

Well... there’s a girl, and a hunky guy, and he’s bleeding to death in her front garden. That doesn’t give too much away does it? No, really, it’s a story about an ordinary office worker who finds herself recruited into a secret team of vigilantes, who’ve made it their business to go about Melbourne eradicating all kinds of baddies (just like Batman). There might be a bit of naughtiness too – some love and lust – but the bedroom door stays firmly closed (in case you’re thinking 50 Shades...)

And your second and most recently released novel Monkey Business? (also published by Penguin).

Monkey Biz is a bit out there. It’s a sequel to the first but you can read it as a stand-alone novel. I’ve unleashed my weird humour in this book. Erica Jewell (my series character) gets a call to say that her beloved (she’d never let him hear her call him that) – the one bleeding to death in Rough Diamond – is in trouble yet again. This time he’s MIA on the dangerous, war-torn island of Saint Sebastian. Erica goes there to rescue him.

Where did your character and plot ideas come from? What has inspired you?

Well, about the time you were born, I was hooked on a very daggy show called Scarecrow and Mrs King. It featured Kate Jackson, fresh from (the original) Charlie’s Angels (another fave), who played a prudish, divorced housewife who happened to be in the right place at the right time and bumped into a spy (“Scarecrow”) needing help escaping bad guys. She was promptly recruited by his secret US agency and never looked back, until she made the mistake of marrying the spy, in which case the series was then boring and over! So I think a seed was planted way back then – it just took 30 years to sprout. And the plot ideas? Mostly from hilarious dinner parties with clever friends and family. (You did keep those sunburn diaries for me didn’t you?) [Editor note: I may indeed share the sunburn diaries at some stage! Keep your eyes peeled folks]

Did you realise right away that you were a funny writer? Or did you work at it?

Who are you calling funny! I’m very serious and sensible. Just look at Erica’s mother – a respectable, God-fearing Catholic lady. You know, as I wrote Rough Diamond, I’d titter to myself about some things (like Erica’s reaction to her Dad farting in front of Jack), but really didn’t expect to be considered a ‘funny writer’. Not that I mind! I quite like it, actually. No, the humour just comes. I can’t help it. A bit like farting, really.

Can you describe Erica Jewell and Jack Jones and the nature of their relationship?

Well, they do have a thing together. But Jack is damaged – he lost his wife and parents in the World Trade Centre in New York on that fateful day – and hasn’t let anyone close to him since. So Jack keeps an emotional arm’s length with Erica, and she doesn’t mind that at all (even though she secretly – to herself only – refers to him as her ‘boyfriend’), having been hurt by her lying, cheating, bastard ex-husband who ran off with a (blonde) bimbo in a (crappy old) sports car. There’s a serious attraction, though, that’s for sure. Over the series it’ll keep heating up until someone’s got to either cook or get outta the kitchen.

Can you tell me about something that gets you excited- something that makes you SQUEE!?

THIS! http://blog.booktopia.com.au/2013/11/08/review-monkey-business-by-kathryn-ledson/

AND THIS:

image from www.vegtv.com 

Lily Mae Martin :: Artist :: Beyond SQUEE!

Georgia :: Lily Mae Martin

Lily Mae Martin is one of the most talented artists that I have ever met. Her work is simply breathtaking. I actually have a physical reaction to it. Maybe that's due to the very personal and truthful depictions of real people, or maybe it's because it's just bloody unreal and so so beautiful. She clearly has amazing talent but what has struck me in conversation with Lily is that she works so hard at her craft and invests fully in the process. I cannot imagine being so dedicated to something but as Lily would attest, she can't NOT make art. 

I had a chat with Lily Mae a couple of days ago and she very generously answered a few questions for The Squee. After reading this and viewing some of her pictures I am sure you'll agree that Lily May is worthy of a super squeaky SQUEE.