29 February 2016

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.

 

26 February 2016

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!

 

18 February 2016

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

Two pictures of Carly Findlay wearing workwear and pyjamas

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.)

 

15 February 2016

Lovely thank you gifts for your bridal party

Bridesmaids in pink dresses, with text 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.

Rolling pin, embossed with chickens, chicken print dough

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!

Gertie's ultimate dress book featuring woman with green rockabilly dress, plus green earrings.

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.

Silver foil earrings by Each to Own

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.

Succulent plant in silver concrete pot

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.)

11 February 2016

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!

Carly Findlay #FashionAngel book cover

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.

 

08 February 2016

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

red Coke cans, with the text Coke is my washing machine miracle

 

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.

Earth Choice laundry liquid, Coke, Morning Fresh dishwashing liquid, Sard degreaser

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.

my freshly washed pyjamas - lime green singlet, floral pants, purple jacket

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.)

 

 

 

 

 

 

04 February 2016

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.

01 February 2016

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.)

 

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