My hens party at Crafternoon and Lady Carolina

My hens party was on Saturday. A hens party is a bachelorette party - the female equivalent of the bucks/stag night. My mum and close girlfriends came along.

My amazing, generous bridesmaids Camille and Cassie organised the most perfect party - colourful, fun, delicious, creative, classy love-filled and naughty. It was a definite reminder that the wedding is drawing closer! I feel so loved.

I wanted to avoid drinking games and strippers and do something creative. I really loved what Cheryl did for her hens night, and I let Camille know.

Camille and Cassie planned it perfectly - organising crafts and high tea at Crafternoon Cafe, followed by cocktails and dinner at Lady Carolina. When I arrived at Crafternoon, the tables were set up with craft packs - brooch materials, headbands and wire hearts, plus plenty of felt, yarn, pom poms and flower motifs. It was like a grown up five year old birthday! (Grown up because there was champagne and penis straws, and a cheeky bubble container.)

And the bridal party wore sashes!

I was presented with an amazing veil - adorned with coloured flowers, felt jewels and pom poms. It was fun wearing it - and it scored me a free drink later on!

Camille, chief crafter, showed us how to make floral brooches and hair clips, headbands and decorated wire hearts. We chatted and nibbled and got to know each other while crafting.

Cheeky!

Here's our amazing creations!

After our crafting, we set off to Lady Carolina - a Mexican social enterprise restaurant - it had the perfect party vibe. Sun streamed through the enclosed courtyard and we enjoyed street food and cocktails.

My cocktail matched my craft.

It is lovely that these guests who didn't know each other before will now see familiar faces at the wedding.

I received a card filled with beautiful well wishes for the day and Adam and my life together.

A big thanks to Camille and Cassie for organising. They are the best bridesmaids ever!

So much fun! Thank you to everyone who came to celebrate.

 

Hear me on Humans of Twitter podcast!

You know I love podcasts. One of my favourite new podcasts is Humans of Twitter, hosted by Steve Molk. Steve has interviewed some amazing Tweeters (some friends of mine) including Kerri Sackville, Rick Morton, Osher Gunsberg, Dee Madigan, Mark Scott and Kate Iselin. Steve is an excellent interviewer - he can really delve into deep conversations.

So I was very excited when Steve asked me to talk to him. It was a fun chat - some parts were very serious, and other parts I talked about bikini waxing.

Listen to the podcast here.

Thanks for having me Steve!

 

There are no wins in having it worse. Chronic illness and disability hierarchy.

This is sore, and this is sore.

On the left, I'm dressed for work. I need to work - to pay rent, to be able to travel, eat out, buy clothes and save for the future. I also need to work to feel valued, to be involved, to contribute to society and to use and develop my skills. And it's a social outlet.

On the right I'm dressed for hospital clinic - as a walk-in patient because I really needed to see a doctor. I saw five doctors and a nurse at the hospital - all offered me advice about antibiotics, immunisation, pain relief and infection control. It was good to talk to professionals who understand.

The photos were taken less than a day apart.

While I am lucky to lead a really full, active life, I'm still sore. I rest in bed a lot. Most of my writing is done in bed. Though I'm smiling, I'm still sore.

I wear pyjamas a lot. I wore them to the hospital. Thank goodness for the fashion gods that have made soft pants a trend, and pyjama pants stylish. I also wear pretty dresses - I love to dress up.

I've been very sore for the past six weeks. Those who aren't close to me wouldn't know it, because I look the same and carry on the same most days. Always red, mostly smiling, my mind never switches off.

Someone recently said I can't really be in pain because I lead an active life (working, travelling, writing, in a relationship) - and that's unrelatable to others in pain, who are unable to lead active lives. Bullocks to that. It's only one person who said these things, but I can't shake it - especially when I'm not well. I always think of their words now.

This kind of hierarchy in the disability and chronic illness community is damaging. It plays on self esteem, confidence and validity of illness, disability and pain. It diminishes achievements. And it contributes to the constant guilt of being unwell - even when I am 'overachieving'. And I bet it's a lonely, resentful existence for those perpetuating it.

I absolutely acknowledge that many others have it worse than me. And others have it better. But I don't pit us against each other. Hierarchy of conditions is rife. This isn't the only time it's happened to me. And I see it happening to others too - medical conditions are often an excuse for bad behaviour.

The "healthy disabled" are disregarded, an assumption that they haven't got much going on that affects their health.Yet I know people in wheelchairs, who some would assume only have a mobility restriction, who are fighting for their lives. Since I've identified with having a chronic illness and disability, I have noticed that while we have different diagnoses, our experiences are similar - especially the way society puts up barriers for us. We shouldn't have to fight the battle within our community. As I wrote four years ago, one upmanship isn't cool.

I wonder whether being around others with chronic illness and disabilities perpetuates one upmanship, especially when those people are online. In 'support groups' (which aren't half as supportive as the title suggests); there is a race to the rarest. Memes are made, with slogans of reality - broken bodies, lonely minds, families not believing them. It's easy to evoke empathy from these memes, but it's also easy to question whether they serve any purpose other than dwelling. And I also wonder if this hierarchy is perpetuated when some don't have a broad political view aaboit disability?

Mum tells me not to worry about what others think of me. And usually I don't. But this hurts. It does. Pain is not a competition or something to be invalidated by someone else experiencing similar. There are no wins in having it worse. No one knows the pain another person faces. We are all doing the best we can. I'm tired of spectating - or worse, being an inadvertent, unwilling contestant - in the Oppression Olympics.

(Image description: me in workwear - a white top with black collar, and black pants; me in pyjamas - blue top, blue floral pants, denim jacket.)

 

Lovely thank you gifts for your bridal party

It's lovely receiving gifts, but it's even better giving them, right?!

Our bridal party has been AMAZING. I can't believe the amount of stuff they've done for Adam and I. Jason, our groomsman, has had a man-date with Adam to organise his suit alterations, and is also baking the cake.

And I can't believe that my bridesmaids have made their dresses, organised my hens day, made invitations AND will probably assist with taking me to the toilet on the day (I can't lift all that tulle myself!). They've worked very hard.

We are very grateful.

So with less than five weeks to the wedding, I thought it was time we showered them with gifts.

Here are some suggestions for what to buy members of your bridal party - and anyone else who has been generous with their time and expertise to help with your wedding.

Personalised gifts

If you've chosen them to be in your bridal party, chances are you'd know them pretty well.

We scoured the Internet, stores and markets, finding personalised gifts for our bridal party.

Adam and I found Jason a rolling pin embossed with chickens. He loves baking and keeps chickens. His face lit up when we gave it to him!

The rolling pin is from Happy Rolling Pin on Etsy.

We also gave him a baking journal which we bought from Amazon. It's a scrap book for bakers - he can write recipes and stick in photos of his creations.

I chose a vintage pattern book for Camille (bridesmaid), plus some cute earrings. The book is Gertie's Ultimate Dress Book - by sewing blogger Gertie Hirsch. Cam said her Saturday nights are sorted now - sewing dresses!

Buy your bridesmaids (or groomsmen) their jewellery for the wedding day. I think that, while you have a style for your wedding day, it's nice to consult with your bridal party about what they like, and what they will wear after the day. Camille had earrings already, but I bought Cassie (Adam's sister and bridesmaid) her earrings which she'll wear on the day. I got her Lush Drops from Each to Own on Etsy.

Their favourite album on vinyl. Maybe it's autographed or a limited release. Maybe it's a Darren Hayes limited edition super album with pictures and CD and vinyl. Yes please!

Experience gifts

A plant. Cassie doesn't know it yet, but I bought her a plant. I'm keeping it alive until I see her next.

A magazine subscription - each month or quarter they'll receive a magazine they love. Try Mag Nation for ideas. I love Lucky Peach, Oh Comely and The Collective.

A pampering voucher - for a day spa or their favourite makeup store. 

A voucher to a fancy restaurant. 

Gifts for your partner

I think it's lovely to buy your partner a wedding present. I've bought something for Adam to remember me by - he can open it on the wedding day. I can't tell you (or him) what it is yet, but it's very romantic.

I bought him a couple of things already - some cufflinks, plus Star Wars themed socks and a lapel pin from Disneyland - he will wear all those on the day.

Other things I think you could buy include:

Cologne or perfume - this can be used (and repurchased) long after the wedding day. The scent will remind you of the wonderful time you had.

A voucher for an experience (a balloon trip, a musical or a meal) - perhaps use it on your six month wedding anniversary or honeymoon.

Jewellery for them to wear on the day. If you're traditional, this could be the "something old" (antique jewellery), "something borrowed" or "something blue".

Write a poem or a love letter - this doesn't cost anything and is so romantic.

Don't forget to budget gifts into your savings. We've been good with setting aside money each pay for wedding expenses - we budgeted (but didn't scrimp) for gifts for those involved in our wedding.

Have you got any ideas for gifts for a bridal party?

(This post hasn't been sponsored nor are there affiliate links to sellers. I just really like and recommend the sellers and products I've linked to.)

The unofficial biography: #FashionAngel. Parodying inspiration porn.

"You might have seen the one, the little girl with no hands drawing a picture with a pencil held in her mouth. You might have seen a child running on carbon fiber prosthetic legs. And these images, there are lots of them out there, they are what we call inspiration porn. (Laughter) And I use the term porn deliberately, because they objectify one group of people for the benefit of another group of people. So in this case, we're objectifying disabled people for the benefit of nondisabled people. The purpose of these images is to inspire you, to motivate you, so that we can look at them and think, "Well, however bad my life is, it could be worse. I could be that person."

- Stella Young - I'm not your inspiration.

 

I'm releasing an unofficial biography. All the cool crips are doing it. The art proof came in on the weekend. I'm loving the Vogue Magazine quote - clearly they're scouring my instagram.

I will sign each book with a greasy thumb print. Every copy comes with a limited edition skin flake. You can use it as a bookmark.

Look!

I'm looking like I am praying, wearing angel wings. Also wearing a cherry print blue dress, and pearls.

The text says:

Carly Findlay - #FashionAngel

"Inspirational."

Descaling the beauty ideal, one natural facial peel at a time.

Read how she's overcome an unfortunate facial affliction to succeed as #FashionAngel, brushing skin flakes off black silk.

"Carly's ability to choose fabrics that don't make her look like a greasy fish and chip wrapper is astounding." ~ Vogue Magazine.

That's a parody. Not a real book. I had so much fun helping to create it though. And I hoped that while it makes people laugh, it also makes them think.

Life's great when you can laugh at yourself and parody the way disability is represented in the media.

Imagine being the victim or hero of the story. Being told you're an inspiration for just existing. Or worse, being described a burden. (Being described a burden in your parent's book about raising you. The horror.) Imagine the constant expectation to overcome your disability. Your vulnerable image used as a sales tool. What about being so locked into a stereotype that people pity you, have low expectations of your abilities and commend you for getting out of bed. What if your closest relative was writing a book in your voice, to make an income? This is the reality for many people with disabilities.

Some friends and I created parodies of our biographies - dripping in inspiration porn, shocking with innuendo and comical blurbs. One featured two dildos. I hope it's jarringly obvious just how bad inspiration porn looks. I wrote my blurb with glee. Late at night, as the fake covers came through, I was giggling so much Adam sleep-slapped me to be quiet.

The reactions to us posting them on Facebook were interesting. Many of my friends realised it was a joke. Some congratulated me. But my disabled friends experienced the funniest and alarming reactions.

Their friends and family believed them. Requested copies of the book. Some didn't believe they could write and so were surprised at this fake announcement. Many were Inspired.

One friend told me how bemused they were, seeing their friends' reaction to the 'book':

"I'm abso-freaking-lutely hornswaggled.

How come Carly"s friends know IT'S A JOKE AND ALL OF MINE ARE CONGRATULATING ME?

I'm a little shocked that my friends think that I would happily promote the schlock I'm spoofing! Or they didn't read it... but even my pic is deliberately a shocker - how could anyone think that was a serious bio? And yet they did by the droves. Perhaps we are perceived as so desperate for attention that we would write anything, publish anything? Bizarre.

I can't wait for a book launch. All cover and no content."

That sums up the way some perceive our activism really. All cover, no content. Are they really even listening?

It's funny, my friends pointed out that so many readers of The Age article commented on my dress, overlooking what I had to say on inspiration porn. And they playfully named me fashion angel. Now I love fashion, and it's nice to be complimented, but perhaps I need to dress down to get the message across.

No matter how much we talk about disability, and what activism we do, some people will not know we do it, or understand it. They might not even want to. Addressing the reality of disability - especially calling out ableism - makes people uncomfortable. They've told me. They've told me to tone it down. To stop taking myself so seriously. Stop looking to be outraged. They're worried their casual ableism might offend me.

In my time writing about The Mighty, I learnt I could try to educate as many people as I could about the definition and problems of inspiration porn, and about disability pride, but the majority were blinded to it because of their perceptions of disability. One woman even told me disabled people exist to inspire others. They see what they want to see - their own perception of disability. And perhaps that's the case because of the churn of media that makes non disabled people feel good about themselves - seeing disabled people suffer, overcome amd inspire.

You could substitute a book with a film or newspaper article or tabloid magazine spread. People with disabilities are mainly portrayed in the same way, as I've highlighted above. Our voices are often diluted by others'. And that's why it's important to take back how we are portrayed. Own it. Laugh at it. Make our own media, on our own terms. Be firm with publishers and journalists about how we are portrayed - question their intent when approached. And we can be proud of and declare our real achievements - when we actually do amazing things .

I do want to wrote a book one day, but I want to do so on my own terms. I want it to be in the style of my blog. In my voice. My cover won't have a sob-story tagline. I will not perpetuate the demeaning, stereotypical way people with disabilities are portrayed.

I'm making an Inspiration Porn Resolution - the only way I'll perpetuate it is to parody it. I hope this demonstrates that we can speak up about the things that matter, while still having fun.

 

Coke is my washing machine miracle - it de-greases clothes and the machine.

 

If you've been reading my Facebook page for a while, you'll be aware that I (understandably) whinge a lot about the way my paraffin ruins my washing machine (and sometimes my clothes).

The paraffin soaks the fabric - especially sheets and the clothes I wear directly on my skin - and then clogs up the washing machine when I wash them. I've had four machines in 13 years. The front loaders' seals broke because of the heat from the grease warping them. Warranties wouldn't cover them, even with medical certificates. When I wash clothes, I wash Adam's separately to mine, but his still ends up greasy. He says, no more sorries.

Now, I don't want to speak too soon but I think I've found a miracle degreaser for my clothes and the washing machine. Coca-Cola! Just regular, none of the diet, zero or green stuff.

Ada, a mum of a child with Ichthyosis recommended it, and I gave it a try on my pyjamas, denim and sheets last weekend.

I used about a cup of Coke in addition to sensitive washing powder (I use OMO sensitive powder, or Earth Choice sensitive liquid), a big squirt of dishwashing liquid (I use whatever brand is tough on grease) and a little Sard Wonder degreaser powder. Sometimes I use Lectric Soda instead of degreaser - it removes grease too.

I poured the coke directly in the drum as the water was running. I washed on a hot cycle. And my washing came out less oily than it's been in a while. The Coke left no stains or stickiness.

I also cleaned my washing machine with two cups of Coke and a dishwasher tablet on a hot cycle and as a result, there was no residue in the tub.

Goodness knows what Coke does to us when we drink it though!

I am so thankful to Ada! It's a miracle!

Here's more info on the way Coke cuts grease.

DeDe has great advice on managing Ichthyosis and washing machines and so does Courtney.

Got any washing machine tips for me?

(Image descriptions: top picture - red Coke cans, with the text 'Coke is my washing machine miracle'; second picture - Earth Choice laundry liquid, Coke, Morning Fresh dishwashing liquid, Sard degreaser; bottom picture - my freshly washed pyjamas - lime green singlet, floral pants, purple jacket.)

 

 

 

 

 

 

Taking stock - February 2016

I've got lots that I want to write but I'm sore and need to rest. But what's a girl to do when she wants to keep the writing juices flowing? Take part in a reflection exercise from Pip Lincolne! I've shortened it a little. This is how I'm feel of in February 2016.

 

Making: Chia pudding. I bought one (plus a smoothie) last week and it cost a million dollars (actually $19 for the two items) and decided that I enjoyed it a lot but can't afford to buy it regularly. So I made my own by soaking black chia seeds in a mix of rice milk, maple syrup and vanilla paste in the fridge. I top it with fruit before I eat it. Delicious!

Cooking: I made a cardamom chicken and rice dish from Yotam Ottolenghi's Jerusalem, and a few recipes from Nigella's book too. They've been recent standouts.

Drinking: Adam bought Bee Mead, and I've been drinking it like cider. It's a little like beer but lighter and sweeter. It's so good.

Reading: lots of amazing disability activist blogs. There are so many fantastic writers out there, exploring important issues. I just wish they had more exposure in mainstream media. This is a great blog post, providing advice about how some charities can be damaging to people with disabilities. (I have a problem with disability charities that focus on raising money for the elusive cure, a cure that will never come, the cure that suggests we aren't good enough and need fixing. Yet the charity doesn't help focus on the every day - surviving bullying, forming a positive self esteem, finding employment etc. You might remember I wrote this related piece last year, focusing on disability poster children and how what they promoted hasn't been what they received.)

Wanting: Ellen to find a flatmate. She is still looking. Her story was on ABC online and radio earlier in the week. Please help!

Looking: Forward to the wedding! It's next month now!!

Playing: Lena Dunham's Women of the Hour Podcast. I loved the ones about friendship and body image. Listen to them!

Deciding: On flowers for the wedding - meeting Pip to discuss them today!

Wishing: there was more to watch on Netflix. Sometimes I feel I'm perpetually scrolling and not finding anything enjoyable. Any recommendations?!

Enjoying: That summer has been cooler than normal, touch wood.

Waiting: For a couple of concerts this month - Jebediah and Rob Thomas.

Liking: that holidays are just around the corner. Four more weeks of work and then three weeks off.

Loving: That Bob Evans is making a new album!

Buying: Last minute wedding stuff. Next on the list - glitter and glue for jars that will hold the flowers.

Watching: Cutthroat Kitchen. The challenges are so much fun to watch!

Hoping: There's an end to offshore detention. No babies, children or adults deserve to be held on Manus Island or Naru.

Marvelling: At how amazing Camille and Cassie have been in organising my hens day and bridesmaid dresses. They are wonderful, creative women.

Needing: More wardrobe space.

Questioning: How quickly the time is flying!

Smelling: The candle that my cleaner broke. It smells more potent now the glass lid has smashed.

Wearing: Bright colours. I got this European coastline skirt from a little pop up store at my local shopping centre, and wore it with my Anthropologie seagull cardi I bought in New York.

Knowing: Everything is going to be ok.

Thinking: Of honeymoon destinations. Europe sounds good.

Admiring: People who

Sorting: Wedding RSVPs for table seating arrangements.

Getting: Excited.

Opening: A surprise parcel from Jennie who crafts at A Little Vintage. She made me a beautiful up cycled neckpiece. I am so lucky to have lovely internet friends. How lovely is this?!

Giggling: While watching First Dates. Imagine having your blind date filmed for TV?!

Feeling: Sore. My feet and my legs especially. Over being sore.

Snacking: On spinach pasties. Adam and I made them from Paul Hollywood's recipe.

Helping: I feel like so many people are helping me right now, and I am so grateful.

Hearing: Lots of good wishes for Adam and I. Thank you.

Do you want to take stock? Pop over to Pip's for the template.

Ichthyosis awareness: Accepting My Limits - a guest post from Hunter Steinitz.

I've admired Hunter for years - shes a star. She is a great role model in the Ichthyosis community - she loves life to the full, and has become a good friend (as has her Dad, Mark). Mark shared their story here in 2014. Hunter has Harlequin Ichthyosis. She recently spent a semester studying in London - I loved seeing her travel photos. She asked me if she could publish a series of guest posts on my blog - of course I said yes! Her first post is about her travels. Travel is definitely tricky for people who have Ichthyosis, but it's not impossible. As Hunter writes, a little rest makes for a better trip.

 

"Last month, I returned after spending a semester studying abroad in London, England. It was a great and rewarding experience! I got to see a lot of theater, visit some beautiful old churches and sample some great European cuisine! This trip also taught me a lot about my limits.

Before I departed, I was thinking about where all I would go, the adventures I would have and all the people I would meet. I was also a bit scared. I was about to leave my family and most of my friends behind to live in a foreign country for three and a half months. I was worried about being able to adjust to new routines and keep up with my peers. Because of my condition, I find it difficult to be on my feet a lot and I move slower than some of my peers. I was concerned that I would be left behind.

Once I got there, some of my worries were realized. I left some events and adventures early because I had a long commute home and I was already exhausted before I left. I heard about adventures that my friends had had after the fact because I wasn’t there. I got winded and sore trying to keep up with them. There were a number of nights that I spent in my flat because by the time I got out to meet up with my friends, it would be time to turn around and go home again. My friends tried to wait for me and after I spoke with them, they adapted our travel patterns to accommodate my pace but I felt like I was holding them back. It was hard.

But that time was necessary. I needed to be face to face with my body and I needed to accept that I need to take time to rest and feel my best. I learned that I can’t make the best of an adventure if I am working so hard to keep up. I can’t enjoy an experience if I am in too much pain to focus on anything but taking the next step. I learned that I need to take a little time to take care of my needs and allow myself to feel my best so that I can come out swinging and make the most of my experience.

As a result of reaching this realization, I altered my routines to allow for more rest time. It was the best decision I could have made. I was fully present for far more and enjoyed far more once I accepted that I’m not Superwoman. I do have limits and its okay to admit them."

For more blog posts from me and guests on Ichthyosis, click here.

(Image descriptions: Hunter Steinitz, who has Ichthyosis, at English landmarks.)

 

A lesson in responding to a kid's shouty, pointy curiosity about my face.

 

The dream

I had a dream on Monday night that made me laugh and embarrassed. I think the dream came about because of a stare-bear (and his mother) I encountered on the weekend. It gets REALLY tiring.

A woman was staring at me a lot. And so I went a bit extreme. Instead of saying hello or smiling, or asking if I could help her, I wiped my face up her arm! Like a dog wiping its slobber.

Then I woke up in horror. Sleeping Carly forgot her manners.

SO ashamed. And amused. (Imagine if I really did that?!)

The reality

I stood behind three kids in a cinema queue. One kid (maybe four years old) was continuously staring at me so I smiled and said hello. His mother, at the ticket counter, turned around and saw me. He continued staring and I just looked away and talked to Adam.

Then the kid started pointing at me and said to his brother "look at that lady, look at that lady". So of course, everyone around looks at me! I said to the kid "please don't point at me It's rude." His mother turned around again and yelled "he's just a little kid. He can't help staring and pointing." I told her I'd said hello to him and smiled, which she had seen.

Then she told me I was rude. She said "I'm giving you an apology now" and "he's too little to understand" and walked off in a huff. The cinema attendant saw it all and said "I'm sorry, you must be so tired of that happening".

As we walked around the shopping centre, I kept coming back to the kid and his mother. She was so rude, I told Adam. Maybe I was rude too? That kid was embarrassing. The mother's response riled me. How can I keep letting these encounters make me feel so powerless, when I encounter them a lot? I couldn't stop thinking about it.

I hate these situations. I hate it when kids single me out and make everyone look. I hate it that kids are sometimes scared of me. I don't want anyone being scared of my face. I never know whether to launch in and explain or invite questions (Stella Young was good at this). And I hate seeming rude for speaking up when I'm uncomfortable.

He is just a kid, he does needs to learn. These encounters are teaching moments, and I'm a teacher. But it's tiring and I often feel powerless to a kid much younger than me.

Sometimes kids are cute and curious and I know what to say immediately, other times they are rude and their parents say nothing. I think encountering rude kids takes me back to my childhood - memories of being taunted and stared at then have stuck with me well into adulthood.

Perhaps a kid hasn't encountered different looking people until they've seen me? Maybe a parent hasn't prepared themselves for diversity? And I can't parent someone else's child.

Encounters like this one at the cinema remind me I'm always learning, just like the kid is. It's a lesson in tailored responses, diplomacy, thinking on my feet and approachability. I second guess my responses and feel ill-equipped. All the writing I'll ever do can't prepare me for a shouty, pointy kid in the cinema queue.

(Image: small female child wearing white top amd orange skirt, pointing upward. There's a rainbow drawing coming out of her head. Text: "Lessons in kids' curiosity" plus my blog URL.)

 

What if I asked you whether you can have sex?

Many think it's always necessary for disabled people or people with facial differences to take every opportunity to educate. Curiosity doesn't need to be satisfied.

People forget their manners when talking to me and others with disabilities and facial difference. They unleash their thoughts and prejudices before engaging their brains.

"Excuse me, can I ask you something?"

That's the most predictable question I'm ever asked.

It's often followed by the variations of these questions:

Have you been sunburnt?

What did you do to yourself?

Are you ok?

Are you wearing traditional African makeup?

Is that a Halloween costume?

Did you have micro dermabrasion?

Is there a cure for that?

That's eczema, isn't it?

Is it fatal?

Can you have children?

Have you been on Embarrassing Bodies?

Will you pass your condition to your children?

Do you resent your parents for giving you a genetic condition?

Can you have sex?

Have you been licking lollies? Is that why your face is so red?

Don't you wish you could change your appearance? (I would)

I've been asked all these questions and more. These questions were mostly asked by strangers. Often accompanied by the universal 'I'm not sure what to say about your face' wave - except they've said it anyway.

I often want to unleash similar questions back to them. (Of course I'd never ask.)

How much do you earn?

Did your poo float or sink?

How many times did you have sex this week?

Did you have a vaginal birth?

What's your favourite porn site?

How much do you weigh?

Are you really happy with your face?

Which child is your least favourite?

Do you masturbate?

Do you stand to wipe?

Would your consider plastic surgery?

I'd like to watch them squirm. I'd like them to think about their actions so hard they apologise and then pass on the message to their friends: never ask a stranger about their appearance. Unless it's to compliment them. Like an etiquette know-how pay it forward arrangement.

Here's the thing. When you look different, your appearance is public property for other people's comments. Kind of like being featured in the hot or not section of a tabloid magazine. Only in real life. In the street. On a tram. In an African restaurant. In the queue for a band. At the supermarket. In the public toilet. Unrelenting.

And the questions come from all types. People who look like they should know better. People who probably don't. People who just need to know.

But they don't need to know. They're not entitled to an explanation if we haven't got the formalities of saying hello out the way.

A version of this was performed at Quippings in December 2015.

(Image description: woman's bottom and legs on a bed, she's wearing short denim shorts and bunny slippers. Text: "What if I asked you whether you can have sex? carlyfindlay.blogspot.com")

#AppearanceDiversity: help find Ellen a flatmate in Adelaide

UPDATE (13 February): ELLEN HAS A FLATMATE!

I really want to help a friend out - and think that you lovely, open minded readers will be able to assist.

My friend Ellen is looking for a flatmate in Adelaide, Australia. Her fully furnished two bedroom flat is near Adelaide CBD & Flinders university. It has a car space and a garage for storage, plus an Internet connection. And it's $160 a week.

Ellen is 24 years old, studying her honours, she is friendly, has a cat and is tidy. She's so smart and is a good conversationalist (we've had some great chats online). Ellen also has a facial difference.

She's had inquires from over 50 potential flatmates since late December, and they've all fallen through. Ellen told me this experience has brought up questions about how she manages disclosing (or not) her facial difference.

"I've met a few nice people, but most turn up on my door step and I can see the "crap. What did I get myself into?" looks on their faces when I answer the door. They then usually quickly walk through the rooms, don't even really "look", then get out the door asap. It's like I've put them on the back foot by not giving them some kind of warning before hand. But the few times I did a brief introductory "friendly" email/text about me that just made it worse."

She's positive though. In Ellen's words:

"I tell myself that it is not a reflection on me, it's just that many are not "Worldly" enough yet. They haven't experienced enough in life and haven't needed to confront or entertain the possibility that a person who has a disability can be independent, capable, intelligent too. That the landlady advertising a nice apartment in a prime location in an inner city suburb might actually have a disability. Might be a bit out of the ordinary. Might look "disabled".

But I'm actually fiercely independent. I am insanely loyal to my friends, I will do anything to help others out, but can't stand being "helped", or mollycoddled. I don't like the tokenism that is implied when people say to my friends "it takes a really special person like you to be friends with Ellen". I am determined to succeed in life. Not just get by "inspite" of disability or set back. I will define myself beyond the experience of disability. I have to be able to prove that I'm more than the way I look - that there is more meaning & substance to my life."

I'm not sharing Ellen's story to evoke sympathy or pity. This is often the reality of looking different - the low expectations, closed mindedness, discomfort and rejection. And while she's not taking the reactions personally, she can accurately read these reactions to her appearance.

I'm sharing Ellen's story to help get her a flatmate. She loves living in her flat and deserves someone to treat her respectfully, help cover half the costs and form a true friendship. And I know, from the conversations about facial difference and disability you've had on this blog and my Facebook and Instagram accounts, you're the right people to share it with.

If you know of a person who's looking to share a flat in Adelaide, please share this post. Thank you.

 

Meeting Nigella Lawson. 'I really love the taste of these sentences.'

(Image: me meeting Nigella Lawson. She's signing my book. Photograph by Melissa Hobbs Photography.)

 

The Christmas before I moved out of home, my parents gave me Nigella Bites. That and Jamie Oliver's The Naked Chef were the cookbooks that taught me the basics of cooking. My favourite thing to cook from Nigella Bites is her stovetop rice pudding - it's my comfort dessert. I love it with cardamom or lemon zest, and sometimes rosewater. I've been a fan of her cooking shows for years, too. I especially like the way she sneaks leftovers from the fridge at midnight.

So when I heard she was coming to Australia and speaking at a Business Chicks event, I snapped up tickets on the day they were released. My mum, Julia, my manager and her friend came along too. Mum, Julia and I had a girly night in a hotel before breakfast with Nigella - so much fun. We met Julia's beautiful family - her four girls and husband - they are delightful.

(Image: Mum, Julia and I in our pyjamas, the night before Nigella.)

 

Last Tuesday morning, Nigella was interviewed by journalist Anjali Rao, in front of 1800 people at Crown Casino. She promoted her new book - Simply Nigella - describing it as "a mixture of serenity and cosiness".

(Image: Simply Nigella book in front of a sign saying "the world is your goddamn oyster".)

She was so calm, articulate and passionate about home cooking. It was far too brief. These talks are never long enough. I could listen to Business Chicks' speakers for hours.

Nigella started by saying she loves Australian food, saying it has a freshness and vibrancy, influenced by Greek, Italian and Asian cultures. She said when she visits Australia, she learns about ingredients she didn't know about before - like white soy sauce and coconut vinegar (thanks for the tips!)

She joked about the Melbourne weather - "the great thing about Melbourne is if it's too hot, I wait a bit longer and it gets cold."

I really loved hearing her thoughts on the connection between language and food. She was once a journalist. "Language got me into food", she said. She didn't want to manage staff at the Sunday Times so she took on a writing contract.

My favourite quote from her whole talk was "when I read a book, I think 'I really love the taste of these sentences'". So gorgeous. (Here she talks about her life in food.) And as I flicked through her new book, I relished the language she uses.

She clarified her sultriness when cooking on camera: "I try to use language to convey the feelings when I cook. I'm focused on the sounds. I'm like a sports commentator, doing commentary on what I'm cooking", she said.

Nigella talked about her role to "encourage", not "harangue" readers about food. She hates the clean eating movement - her thoughts on this have been documented in recent interviews. She believes people can't eat well when they're made to feel bad about their food. "You never make any good decisions from a bad place. That's not helpful." Nigella touched on her mother's troubled relationship work food, saying she didn't want to take that path. "I don't deny myself food, but I don't binge on it either. I love baking. It doesn't mean I eat cake every day", she said.

She spoke about the merits of home cooking, and how she wants to elevate the importance of home cooking. "How we cook at home is the true story of cooking. I felt there was something wrong that cooking had been dominated by the qualified chef. But a chef hasn't got the freedom to play with recipes once they're on the menu. It's conveyor belt cooking. I'd feel very hemmed in having to cook the same thing over and over again." She described chefs as "a prisoner of their own brilliance", because no one wants to eat a modified dish off the menu they love. "I don't think you can pretend your home is a restaurant."

I think the whole Palladium was impressed when she said she doesn't believe Nigella is a brand. "I don't wish to be a commodity." She does all her social media herself. She is hands on with her work - looking down the barrel of the lens in all photo shoots. "I won't let anything go out unless I've written it", she said. She added she wouldn't recommend not being a good delegator to everyone, though.

Nigella prefers slow food to fast cooking. "Slow food doesn't mean stodgy, nostalgic or bland", she said. "A bowl of ramen is uplifting." She described fast cooking as "a bit frenetic." "I don't find chopping for a stirfry calming, I'd rather put a chicken in the oven", she told us.

Continuing on the anti-food-shaming theme, she doesn't want to make anyone feel bad for not being able to cook. "I don't think a person who can cook is morally superior."

She ended with talking about her favourite recipe from her new book - chicken shawarma. She enjoys it as part of an indoor picnic.

After the interview, Nigella signed her book. It was a long wait for a very brief meeting. And no photos with her either. But I managed to snap a couple after our meet.

(Images: Nigella Lawson smiling and signing books.)

I was so proud of Julia giving Nigella her own best selling book!

Nigella was very friendly - she smiled and thanked me when I told her she taught me how to cook when I left home. And she's radiant. So beautiful. It was nice to say hello to someone who really has influenced me.

What an exciting breakfast! I really love hearing successful women share their stories.

Have you had breakfast with a celebrity cook before? What did they cook?!

Seven things Julia Gillard taught me when I met her.

 

In November, I was lucky enough to meet Julia Gillard, Australia's first female prime minister. Julia is the patron of the Layne Beachley Aim for the Stars Foundation, and I am an ambassador and 2012 grant recipient. I admire Julia a lot, and was so excited to be invited to the women in leadership luncheon event. I had seen her speak in 2013 and was inspired then.

It was a stinking hot day in Sydney and so after an early arrival and a 10 minute walk from the train station to the hotel, I was a bit exhausted. So I stayed in the hotel all day. It was great to get there early as it meant I could spend time with the other ambassadors (Parrys Raines and Mel Thomas) help the Aim for the Stars team prepare for Julia's arrival.

Before the luncheon, Julia addressed a group of female students aged 12-17. They were recipients of Make A Mark Project scholarships to attend the lunch. And these girls were amazing. Parrys and I interviewed them on camera, asking them their goals and why they admired Julia Gillard. One girl I interviewed gave me such a mature, complex description about her career plans, I was lost for words! Girls said they want to be social workers, human rights lawyers, environmentalists.

Mel then warmed the girls up by talking about the Foundation and her work running KYUP! Project (empowering girls to grow up free from violence). She was an excellent host. Parrys Parrys spoke of her initiative - climate change activism - and achievements - she'd just been on stage with Pharell Williams, discussing climate change in LA. This woman is 21 and has accomplished so much.

I then spoke about my writing and activism, and the girls had excellent questions. Questions included whether the government is doing enough for people with disability? How do I balance things? Was my ichthyosis community there in real life before you started blogging? How do I cope with criticism? I loved how broadly they thought.

And then Julia arrived! We had practiced standing and clapping but I think our practice was forgotten in the excitement!

Julia spent 10 minutes speaking about the importance of education. "Never take your education for granted", she said. Julia is currently Chair of Global Partnership for Education.

She mentioned inequity across the developed and third worlds, and also about local education. She praised public education, saying she received quality education from state schools in South Australia.

After she spoke to the students, Layne Beachley introduced Parrys, Mel and I to Julia. Our conversation was very brief - Layne reminded us about our elevator pitches, and so I told Julia about my writing and thanked her for the NDIS. I gave her my card, and she said "I must catch up with your blog". I was totally fangirling. We then had photos, and she was very funny, offering to sprawl across the grand piano.

 

 

Mel Thomas, Julia Gillard, Parrys Raines and I

 

The luncheon commenced with Layne Beachley opening it. She spoke of why she started the Foundation, and told us a hilarious story of her interaction with Kevin Rudd (Julia's predecessor).

Layne Beachley and I

 

 

Julia was also was very funny during her keynote speech, referring to 50 Shades of Grey, and talking football with MC Holly Ransom. Here's what she taught me.

1. "Hone your sense of purpose."

Julia said she believes it's important to advocate for something more thoughtful than slogan selection. She said the best piece of advice she received was from a mentor who told her, in the midst of all of the chaos, Julia should sit down and write down her sense of purpose. "On the toughest of days, the worst of days, it was a touch stone, reminding me what I was in for."

2. "I've never defined myself through approval from others. I always had an inner reserve within myself when I didn't feel liked."

3. On the impact of social media: "If it [nastiness] comes in on Twitter after midnight, it's fuelled by alcohol not acumen, and don't let it get in your head."

4. "Find discipline to take time to do what matters."

Julia said "never has the urgent been more privileged." She encouraged us to think about taking time to get urgent done versus taking time to get what matters done.

5. "I think alone and with the best and brightest around me." PJulia spoke of the importance of a support network. "You will need people around you on your side. You need their loving and nurturing support as you give them. You've got to surround yourself with people who care for you. Remember make the time to support and care for them in return."

6. "While I don't underestimate the challenges and prejudice in this world, I'm a huge optimist."

Julia talked about gender inequality and stereotypes and strongly believes that education will improve this.

7. "Think big. It will pay dividends."Enough said.

No matter what side of politics you lean, Julia's wisdom is universally applicable. She is so warm and articulate and very funny.

There were also three other female leaders on the speaking panel: Cindy Hook - CEO Deloitte, Louise Herron - CEO Sydney Opera House and Cathy Foley from CSIRO. They had some great messages - my biggest take homes were from Cathy Foley who is both a scientist and a comedian.

"Don't be a victim As soon as you become a victim you're giving up."

"To be different you have to do different."

"Never go to work without knowing what's for dinner tonight. My husband taught me this and I married him."

"Never go to bed without knowing what you're wearing next morning."

"Housework - don't worry about that."

After the luncheon, I spoke to Kirk Pengilly (Layne's husband) and the first thing I told him was that Camille had her transplant. When I met him in 2012, he called her.

Kirk Pengilly and I

And then I met my second cousin Ben, he works for Deloitte.

Carly Findlay and Ben Findlay

Such a good surprise!

He introduced me to Julia Gillard's partner who was just lovely.

 

And I finally met Kate Sutton, founder of UberKate Jewels.

With Kate Sutton from UberKate

 

It was SUCH a wonderful event and I returned from Sydney feeling tired yet empowered. Meeting Julia Gillard was a bucket list item ticked off, and hearing from so many successful female leaders gave me lots of ideas and inspiration.

Mel Thomas, Julia Gillard, Parrys Raines, me and Layne Beachley

 

I attended the luncheon as an ambassador for Layne Beachley Aim for the Stars Foundation. I paid for my own airfare.