My wedding story in New Idea magazine! Why I'm changing the narrative of disability in the mainstream media.

 

Because I'm about changing the narrative of disability and appearance diversity in mainstream media, and also a freelance writer and need to pay the bills, I wrote Adam and my wedding story for New Idea  I wrote it in third person, and now New Idea claims me as their "favourite appearance activist". (Who's their second favourite?) I'm two pages behind Osher Gunsberg's wedding spread, so I guess a spot on commercial radio is next for me. 

The paper edition is out in Australia this week, or you can read a preview here.

I chose New Idea because I already had a relationship with them (here and here), and it's also an audience I don't often reach. It changes the way society sees people living with Ichthyosis, and also the way we see ourselves. I was very firm with how I wanted to be represented, and made several edits.

Last week a friend who lives with Ichthyosis shared another of her beautiful wedding photos on Facebook. She got married in October. I've loved seeing her photos and video, and of course I clicked like. She has only shared a few photos, unlike me who's shared around 865! I want to see more photos - I loved her flowers and her dress and her cute jacket that was embroidered with her new surname! It was all so pretty! Seriously how beautiful is her wedding video?!

Early the next morning, my friend sent me a screen shot of an awful comment she received on the photo - from another woman with Ichthyosis. The comment said "sick to death of seeing this. You were married six months ago. Are we going to have this all year [?]. Jesus, grow up." Then she blocked my friend.

Gobsmacked. My friend's husband sent this woman a message, questioning this hate filled message very politely, telling her what the wedding represents - a dream they'd never thought come true. The woman with Ichthyosis told him my friend isn't dying, she on,us has a skin disorder, FFS. There was swearing and more bitterness. Horrible. It must be tiring being that miserable. My friend laughed it off, resilient as fuck. 

I was so sad for her. 

This behaviour is lateral violence. It's internalised ableism. I've seen it happen a lot between people with similar (or different) disabilities. I've been on the receiving end of it from people,with Ichthyosis. 

It's so important for people with Ichthyosis - like my friend and I - to share these life milestones. And even the mundane. It shows the world that despite low expectations, we can achieve and be loved. It gives hope for future generations living with the condition.

Many people with Ichthyosis go through our lives being told we are undesirable and unlovable. We're also told that if we put our strange, unsightly faces and bodies* out there, especially on social media or in mainstream media, we are attention seekers. We can't love ourselves when so many others don't love us. We are conditioned to hide away, because the media rarely shows people like us in a non sensational, non exploitative way.

And this is why I told my story to New Idea. On my own terms. To show others who feel like they need to hide away, or told to take those photos down, or doubted for being happy with their unique beauty that it's ok to be proud of the way they look, and to celebrate a massive milestone like getting married or having a baby  We are able to do this on our own terms - through social media, and magazines like New Idea, if we choose. We can change the narratives or disability, appearance diversity and Ichthyosis so the world won't get tired or frightened of seeing us, 

Thanks for having me write for you again, New Idea. It's been a great experience.

 

*absolute sarcasm

For advice on what to do when the media asks you to share your story about your disability, facial difference or Ichthyosis, click here. 

Has this blog post made you think or laugh? Why not buy me a drink to show your gratitude? Thanks! 

Our wedding day: the video.

A few weeks before the wedding, I realised I wanted a videographer. Friends suggested I ask a blogger who enjoys making videos, and I did! I put a call out in a bloggers group, saying I haven't got a huge budget but willing to pay, and promote them on my blog and socials. I added that it could also be a great opportunity for them to develop skills.

The amazing Clare Reilly from The Life of Clare Blog nominated herself, showing me some of the little videos she's taken recently. I loved them and she's a great friend so I gave her the opportunity! Initially she wanted to do the videography as a gift and I thanked her but insisted we pay her. She refused. Eventually I (and her husband) convinced her to take up Adam and my offer of paying for her to stay in a lovely Air BNB for the night.

I'm so glad Clare offered to film our wedding. She did a great job, and it was lovely having her there too. I think she learnt a lot from our professional photographers too.

Here's the beautiful Clare, camera in hand. Photo by Fresh Photography.

Add caption

Clare said:

"I was so happy to be involved. Up until Carly saying yes to my offer I had only ever filmed videos on my iPhone, so I wanted to get good quickly before filming the wedding.

The day was beautiful to be a part of but it was long and stressful (I wasn't too stressed!). I used my limited experience to try to get different shots throughout the day and was more interested in getting real candid moments instead of posed shots.

When it came to the editing I had a really hard time until we found the music policy section on YouTube. Then I was able to edit with confidence.

I learnt that I love making videos, I love sharing beautiful moments in that way."

I love the details in the video - they bring back wonderful memories. I have a few favourite moments - Mum putting my cream on (no one sees that, and it takes me back to childhood), my Dad seeing me for the first time, Adam coming down the aisle (I was waiting to see his grand arrival), us being silly, and all our friends dancing. The music Clare used featured in our ceremony and reception. Perfect.

Here it is!

I've watched it five times now, and I've cried each time! Thanks for doing a fabulous job, Clare!

And sorry this is the only photo of us - taken by Jarrod. I'm sure Clare has the selfie!

I strongly encourage you to ask people if they are interested in collaborating with you, and putting your hand up to do something, even if you've just dabbled in it. Asking Clare to do the video got me thinking about the shared economy - trading skills and talents fairly - but that's a blog for another time...

Follow Clare's blog, Facebook, Instagram, Twitter and YouTube.

Read more wedding posts here.

 

Our wedding day: all the pretty dresses

It's been so much fun writing about the wedding! I can't believe it's more than a month ago. This post is the topic that everyone is asking me about - the clothes! All pictures are by Fresh Photography unless stated.

I had such an extensive wedding wardrobe! Two dresses, three jackets, two pairs of shoes and two bras! It was lots of fun to have wardrobe changes, and also kept me comfortable.

Having two dresses was extravagant but practical. Plus my first dress was on an incredible sale, and my second dress was kindly gifted.

Dress one was more bride-y than I'd ever imagined I'd wear. I bought it in June 2014 from Fairytales Bridal Boutique - Mum actually picked it out. It had six skirt layers and half a metre of tulle was cut off as I'm so short. It was adjusted with a lace up panel at the back to accommodate my bust. My lovely dressmaker altered it - I think I spent more time standing in it for fittings than wearing it on the wedding day!

I loved it - I felt like a princess!

I wore some soft gold glitter peep toe wedges for the ceremony and some of the photos, but I soon removed them and replaced them with some comfier soft gold ballet flats. My dress length was just right for both pairs of shoes. I can wear my shoes again.

In the lead up to our wedding, I was really worried about how the boning in my very bride-y dress would affect my skin. I asked married girlfriends with Ichthyosis for advice on how they kept comfortable on their big day, and also asked my dressmaker friend to make a simple jersey band to wear underneath the bodice - to avoid the synthetic fabric hurting me. I was also lucky to be given a second wedding dress from St Frock to change into, should I need to.

(Picture by Camille)

I managed to stay comfortable in my traditional dress from 1.30 - 9.00 pm. And then I wanted to be able to sit comfortably, eat dessert and dance. Oh yeah, and go to the toilet on my own! And my forearms were getting a little sore from the lack of moisture. So I layered up (with a Metalicus 3/4 sleeve top that disappointingly ran on first wear), the sequinned maxi dress and a little coatlet plus a brooch in the wedding theme colours.

This dress was made for dancing! So swishy and comfortable.

Thanks St Frock!

It's important for me to cover up and as much as I'd loved to have bare arms, it wasn't possible. I get itchy, dry, cold and sore. Plus I wouldn't have bare arms in every day life. And so I covered up with jackets.

For the ceremony, I went traditional - my big white dress and a simple lace bolero that was handmade and given to by my friend Jackie who runs clothing label M'gapi. It was so soft and comfortable to wear - beautifully made to measure.

(Picture by Sandra)

During the official photos, I put on a coloured jacket which was lots of fun! That was by a UK brand called Darling (I bought it from a shop in Yarraville that's recently closed down), and while it's not on sale in store, I saw a couple on eBay.

I promise to write more about this jacket in a future post - it really was the feature of the wedding.

And I put a winter white coatlet on with my second dress (the coatlet was from a bridal store in the city that has now shut down), and pinned the collar with a brooch from Clay and Chic on Etsy. (There's a photo of the brooch below.)

My headpiece was handmade - I found an amazing artist at the Etsy bridal fair. Ashlee Lauren, from South Australia, created a lavish headpiece for me - it fit like an Aliceband. It was rose gold, silver and crystals.

The jewellery was simple - a pearl and cubic zirconia pendant on a silver chain (from Salera's), a pearl bracelet (from Royal Pearl and Gem in Royal Arcade Melbourne CBD) and my grandmother's engagement ring - which is a blue sapphire surrounded by diamonds. I put my engagement ring on my right hand. Now I have my wedding ring, I have been wearing it on my right hand and my engagement ring on my left (my hands have been too sore and swollen to wear them both on one finger right now).

Adam wore a dark blue suit - a suede-like jacket with brown elbow patches (from Peter Jackson), suit pants (from Connor), a white shirt (also from Connor) and a cornflower blue bow tie (from Peter Jackson). He accessorised with Yoda socks (I got them from an online comic store) and a Mickey Mouse Jedi pin I bought from Paris Disneyland.

He looked so dapper! This was the first time I've seen him in a suit!

Camille made dresses for her and Cassie - they were pink and blue shantung silk. I said they could wear whatever they felt comfortable in, as long as it was in the colour scheme. The dresses were so simple and pretty, and I hope they get lots of wear out of them again. Camille did such a great job! She even made matching bags. Their jewellery was their own.

Jason told me he wore a blue blazer, a shirt with red floral pattern, pink check tie and black stripe suit.

He had Blundstone boots, undies by Bonds, and a buttoniere by Nic's Button Buds.

My mum wore an amazing black and hot pink jacquard dress from Anthea Crawford. It went perfectly with the bridal party. I loved it so much!

Dad had a white shirt, striped tie and black pants on. He was adamant he wasn't going to wear a suit... Too restrictive to dance in I guess!

Read more wedding posts here.

 

Our wedding day: official photography by Fresh Photography

 

Our official wedding photographers have just sent us through all photos of our special day. There are so many to choose from, so here are just a few. Husband and wife team Souri and Andreas from Fresh Photography captured the emotions of the day perfectly. I love seeing everyone so happy – dancing and laughing. As I looked through them, I had tears.

Our wedding took place in Balaclava, so the photography locations were urban – think house fronts, trams and street art, and of course our wonderful venue. There was lots of interesting street art around Red Scooter, which added a pop of colour to the photos. The photography session between the ceremony and reception was a lot of fun for us (and we hope fun for our guests – they mingled and drank at the bar).

 

I first met Souri and Andreas from Fresh Photography at the Kidspot Voices of 2014 event – Souri blogs at Fabulous Femme and she was one of the winners of the beauty awards. She wrote about that here. It was really good to have seen Andreas in action at the awards night, and to have a reference point through their blogs. I remember looking at their portfolio online with Adam, inspired by the unique photo style, and saying to Adam "they're the ones we want to work with on our wedding day"

Isn't it brilliant how blogging brings people together?!

 

Souri was so calming, and Andreas was lively during the reception. They put us at ease from our first meeting and of course on the day, and I know we will stay friends.

Souri and Andreas donated the fee for our wedding to charities that are meaningful to them. So lovely. I cannot recommend Souri and Andreas enough.

See lots of Fresh Photography’s photos from our day on their blog.