2017-06-17 21:48
I don't blog here anymore. I write at carlyfindlay.com.au. Yes, I've grown up and bought a dot com (dot au).I need to figure out how to redirect traffic from here to there - can anyone help?… Read More
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Telling my story of what it's like to live with Ichthyosis and a visible difference. Loving life!
2017-02-05 12:29
(Photo of woman in wheelchair, playing sport. She is smiling. Text reads: "Inspiration and objectification of people with disability - a resource for teachers and parents.")A… Read More
2017-02-03 08:43
I haven't blogged for ages, I'm sorry. I've done a lot in the media, though - that's why it's been so busy. This weekend I'm working on a big blog, and another secret project, so keep an eye… Read More
2017-01-16 20:00
Yesterday I engaged with two people who excused their ableism by saying they work with children and adults with disability. No.That's like saying you know a black person so you can be racist… Read More
2017-01-09 09:37
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… Read More
2017-01-07 23:01
I have set up a private Facebook support group for Australian and New Zealamd women (and people who identify as women) who have Ichthyosis. If you fall into this category, y… Read More
2016-12-31 06:35
If we measure life's worth by social media reactions, which we shouldn't but we do, 10 year old me feels more loved, valued and visible in the last few days of 2016 than I did when tha… Read More
2016-12-29 21:17
You know when you have a crush on someone and somehow you magic your life so your worlds collide and you do something together? Well that hadn't happened to me until I was asked… Read More
2016-12-28 22:58
A couple of weeks ago I was interviewed for the Neighbuzz podcast. It was a special bonus episode focused on disability. Neighbuzz is hosted and produced by Vaya Pashos… Read More
2016-12-27 05:24
This post mentions violence toward women with disability. I went to see Silent Tears at MAMA - Murray Art Museum Albury in Albury on the weekend. It was moving and heart… Read More
2016-12-23 03:23
It's a year since #CrippingtheMighty happened. In short, The Mighty, a disability-focused site, publishes content that is damaging to people with disability. A number of disabled w… Read More
2016-12-20 08:43
I'm excited about my second publication on ABC News this week. I was commissioned to interview a few people with disability who navigate the healthcare system. I spoke with an Aboriginal wom… Read More
2016-12-19 07:20
The cleaner was due today. Last time they came, they were scared of my face and left. There is usually a different cleaner each time. I know this now I work from home, and al… Read More
2016-12-16 06:20
Hello! My little blog turns seven today! It's seven years since I started off with this small voice. Over the years, I've been more courageous to share big opinions - my… Read More
2016-12-10 23:11
Are you looking for a last minute Christmas present, or a just-because-present, or simply need a calendar because you some have one and you're one frantic schedule away from missing an event… Read More
2016-12-07 21:12
It's my birthday today! I'm halfway to 70. Can you believe it? I can't. This is middle age. I don't feel my age, I don't feel grown up, and don't think I look it either. What does 35 e… Read More
2016-12-05 09:06
This is my face up close. It's red, shiny and a bit lopsided because of a dodgy lymph node that flares up because of my inflammation. It's usually very smiley. Sometimes my hair is out of co… Read More
2016-12-04 20:32
Last week was huge. Busy, so busy. Between day job and freelancing, I wrote seven articles for the media. And here are two of them. I was invited to write for the ABC (our national publ… Read More
2016-11-30 04:52
(Image from Osher Gunsberg's Instagram)A little over a month ago, I was interviewed by Osher Günsberg for his podcast. He's the host of The Bachelor. I love his podcast - he's podc… Read More
2016-11-26 23:02
I've been wanting to meet more of my blog readers for a while. You are so lovely, thoughtful and supportive, and I appreciate the rich discussions you have on my blog, Facebook and Ins… Read More
2016-11-23 20:00
I got to hang out with Kyri just before I went overseas. We were in Sydney for an award ceremony . It was so much fun, and we realised how much we have in common. We could no… Read More
2016-11-20 22:12
Last week, a mum in one of the Ichthyosis groups I belong to asked about books to teach kids about Ichthyosis (and visible difference). The thread was soon filled with suggestions - an… Read More
2016-11-14 01:13
I've seen body shaming, food shaming and now medical shaming - where people are made to feel guilty or fearful for their medical treatment choices. It is also where people are recommended no… Read More
2016-11-06 20:00
On Saturday morning, I met with 11 year old Anirudh Kathirvel for an interview. He hands out badges to commuters, for them to say they're willing to give up their train or tram sea… Read More
2016-11-01 20:00
Content warning this post contains details of bullying and suicide. Crisis line details are at the bottom of this post. Bethany Thompson, an 11 year old girl from Ohio killed herse… Read More
2016-10-30 20:01
Over the weekend, a story came out about Jennifer Hawkins not speaking up about Donald Trump's derogatory comments towards her on stage at an event. I have to be honest and admit I haven't b… Read More
2016-10-23 20:00
Jason and I launched our podcast four weeks ago and I haven't blogged about it yet. Sorry. I was overseas. Anyway, here it is! It's called Refreshements Provided and it's an irreverent chat… Read More
2016-10-19 03:59
Warning: This post contains content about violence, murder and suicide related to disability. I've been struggling reading about the alleged murder-suicide that happened in Sydney ea… Read More
2016-09-30 04:28
Hello from London! Adam and I are on our honeymoon until late October. We're seeing three big cities and a few places in between. I'll be blogging intermittently until we return. &hell…Read More
2016-09-18 21:00
In July I was alerted to some children in Wajir, Kenya who are suffering terribly from Ichthyosis. I rarely use the term 'suffering' but these children really are. My heart breaks for them.T… Read More
2016-09-15 21:49
On Wednesday night I had the pleasure of attending the Australian Centre for Leadership for Women Diversity Awards in Sydney. From the website:"ACLW’s Awards Program commenced in 2006… Read More
2016-09-13 10:30
Last week, an article was published about two young siblings in India living with Lamellar Ichthyosis. The article describes the children as having snake skin.Sayali (13) and Siddhant (11)… Read More
2016-09-09 07:44
It's an exciting week for disability-inclusive fashion - from chainstore to runway. Two young Australian women featuring in the Target catalogue and in New York Fashion Week. This week, Tar… Read More
2016-09-05 21:55
I set up a Patreon account!Through my blog and social media, I share personal lived experiences of what it's like to have ichthyosis and a facial difference. I write opinion pieces on appear… Read More
2016-08-28 21:00
On a recent Friday evening, I finished work with the excitement of a weekend full of reading and cooking. I headed down to my local bookstore on the tram before going home. While I was on th… Read More
2016-08-22 21:04
There's a funny irony in writing this. I started writing this in mid July. I called for quotes, did some research and expected to knock this out in an evening – writing from personal e… Read More
Language Really Does Matter When Reporting About People Living With Ichthyosis. Harper's Real Story.
2016-08-18 21:53
This article from Stock News USA came up in my google alerts yesterday morning. You can read the full text here. "Suffering from horrible harlequin Ichthyosis.""When she was born, she looked… Read More
2016-08-18 00:12
Late last year I met a wonderful woman called Jenny Joy, and she interviewed me for her Fully Sick podcast. The episode aired last month - apologies for not posting about it earlier. Jenny i… Read More
2016-08-14 22:38
I don't know about you, but sometimes I feel that a chronic illness can be a bit overlooked by people around me. I'm not saying they don't care, but it's either no surprise or a big surprise… Read More
DonateLife Week - End The Wait. Stories From People Whose Lives Have Been Changed By Organ Donation.
2016-08-05 00:05
This week (31 July - 7 August) is DonateLifeWeek. I apologise for the late timing of this post - I've been in hospital since Tuesday. But my wonderful friends, whose lives have been changed… Read More
2016-07-31 21:00
A bit over a week ago someone who has ichthyosis asked me why I classify myself as disabled, because they don't. They said to me: "I actually think that this may come across as offensive to… Read More
2016-07-28 20:13
This post contains graphic descriptions of violence, ableism, eugenics and murder. If you need to talk to someone, contact LifeLine on 13 11 14 or Kids Helpline on 1800 55 1800 in Australia… Read More
2016-07-22 11:57
Hello! I've just had my wisdom teeth out suddenly and I'm not able to do much other than cocoon under the doona, mope and eat soft food. I've got about 15 pieces of writing in draft form bu… Read More
2016-07-19 04:02
When you say "I don’t see your disability", you think disability is below me.When you say "I don’t see your disability", you don’t think I’m disabled like "them".When… Read More
2016-07-14 23:05
A month and a half ago, I set up a donate button through Paypal so readers can 'buy me a drink' if you have enjoyed my writing and/or if it's helped you in some way. When I posted about it o… Read More
2016-07-10 21:28
I'm not going to get it right all the time.Even though I'm an activist. Even though I'm an advocate. Even though I have a disability. I won't live up to your expectations. They're sometimes… Read More
2016-07-07 21:46
Firstly, big apologies for the shonky layout of this post. My bloggi… Read More
2016-07-03 21:41
This blog contains a censored naked photo and some aggressive language. I've posted the screen shots at the bottom of the blog so you can read the whole post and skip the nasty stuff. If you… Read More
2016-07-03 00:00
Gosh I love winter. Snuggly parkas, woolly hats, being a homebody and making comfort foods. As I write this, Adam's at a party and I'm under my new thick doona - a night of writing and podca… Read More
2016-06-30 09:02
It's social media day today!Social media has allowed previously unheard voices to be heard and unseen faces and bodies to be seen - on our terms. Blogs, podcasts and social media channels h… Read More
2016-06-26 22:11
The hands-down best thing about the Internet is how it's allowed so many of us (especially from marginalised communities) to have a voice. We can all be media makers and have an audience. An… Read More
2016-06-15 21:36
This post discusses suicide. If you need to talk to someone, please call Lifeline on 13 11 14 or the equivalent support service in your country. It also contains spoilers about the book and… Read More
2016-06-09 21:00
I went to the doctor with a pain in my head.An ongoing headache. She looked in my mouth twice, poking my tongue with an unsweetened paddlepop stick. I looked at the wall, lined with anti-obe… Read More
2016-06-05 21:00
About a year ago I sent Tara Moss a link to a piece of writing I did, as I thought it was relevant to something she'd just discussed. I'd admired her writing for a while, excited to see her… Read More
2016-06-02 21:00
When I tell people I've just met that I'm a newlywed, a common question is "when are the babies coming?" I reckon I'm asked this twice a week.Adam and I went out to an event four days after… Read More
2016-05-30 21:13
A while back I wrote about the ways you can use instagram to connect with the chronic illness community. And my mate Starbrite Warrior wrote about this too. It's so ace to connect with other… Read More
2016-05-29 21:00
I was reading about how angry snakes get when they shed their skin. One animal carer said he observed a skin-shedding snake to lose most of its vision and wouldn't let anyone near him.The pr… Read More
2016-05-26 21:46
My friend Karin from Holland writes for Ichthyosis Awareness Month today. Karin runs Vereniging voor Ichthyosis Netwerken - the Dutch Association for Ichthyosis Networks. She's doing an amaz… Read More
2016-05-25 21:00
One thing I can’t seem to find is a resource offering advice on how to cope emotionally while living with Ichthyosis. There is a lot of fundraising money for research and a big focus o… Read More
2016-05-22 22:46
I often get asked why I cover up so much. Am I hiding my skin condition? Am I cold when it’s really hot? Am I sure I’m not hot?!I don’t go out of my way to hide my Ichthyos… Read More
2016-05-19 21:00
Today as part of Ichthyosis awareness month, I'm sharing a video from Crystal.She talks about the difficulties of getting and keeping a job - employers discriminate because of her skin. I ho… Read More
2016-05-15 21:00
On Friday, I stepped out of work to do a speech at pretty exciting event. You can read about that on my Facebook. About 15 minutes before I left for the event, my tooth broke. I wasn't eatin… Read More
2016-05-12 21:13
I'm a pretty private person when it comes to the actual maintenance of my skin. Not many see me washing my face or the scattering of skin flakes that cover every surface I touch. You might… Read More
2016-05-10 21:20
Styling our wedding was such such a highlight. I started planning how the wedding would look pretty much the day after Adam put a ring on it. I had bought so many bridal magazines, and knew… Read More
2016-05-09 21:10
Content warning: this post contains screen shots featuring hate speech about Ichthyosis, and examples of ableist media representation of the condition.Sometimes I torture myself by searching… Read More
2016-05-08 21:07
Content warning: this post contains screen shots featuring hate speech about Ichthyosis, and examples of ableist media representation of the condition.Sometimes I torture myself by searching… Read More
2016-05-05 21:06
I first met Ainsley and her husband in January 2015. Her little girl has Ichthyosis. We chatted for hours - exchanging anecdotes and advice. I finally met her beautiful daughter just before… Read More
2016-05-02 21:10
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 have… Read More
2016-04-30 22:10
It's May and that means it's Ichthyosis Awareness Month. This isn't my usual chipper post. This is me being cynical. From the Royal Children's Hospital website: "Ichthyosis means 'fish… Read More
2016-04-27 21:00
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… Read More
2016-04-25 21:17
A sponsored post brought to you by Nuffnang and the National Trust of Victoria.I was lucky enough to be invited to the opening of The Dressmaker costume exhibition at Ripponlea last week. Wh… Read More
2016-04-23 23:00
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 An… Read More
2016-04-22 02:16
Something that can hurt as much as the stares, ridiculing comments and discrimination because of my face is the look of surprise from people who see me for the first time. I popped into… Read More
2016-04-19 21:00
On Sunday, American disability activist, film maker and writer Dominick Evans asked me to take part in the Ableism Exists hashtag on Twitter - an initiative he started to prove ableism does… Read More
2016-04-17 21:00
I was pottering about on the last Friday of my holiday, sorting the last few things from our wedding and getting prints of photos made. One idea I had was to create a shadow box filled with… Read More
2016-04-16 06:16
The first week of my holiday was really busy! Wedding prep took priority of course, but I had a couple of media commitments too. The first was a chat with Amanda and Tan from the Aussie Blo… Read More
2016-04-10 21:00
(Picture by Sandra)Today's I am writing about the wedding ceremony. I promise my blog hasn't tuned into a wedding blog - but I want to tell the story of the day in several parts. Firstly, h… Read More
2016-04-05 21:31
(Picture by Camille) I covered the wedding venue on Monday, and this post is about getting ready for the wedding. Thank you for all your lovely comments on the previous post! I have so many… Read More
2016-04-03 21:00
I've seen body shaming, food shaming and now medical shaming - where people are made to feel guilty or fearful for their medical treatment choices. It is also where people are recommended n… Read More
2016-04-03 21:00
(Picture by Cassie)Our wedding day was the most amazing, fun, romantic, stylish, emotional, sigh inducing day. After almost two years of planning and saving, it came together perfectly. I am… Read More
2016-03-29 21:24
(Photo by Souri from Fabulous Femme and Fresh Photography)I tend to fall in a heap after a big, exciting event. As a child, I'd have my birthday or go on an excursion to the zoo and then spe… Read More
2016-03-21 22:27
I want to do a proper blog post about the wedding soon, but for now, I'll keep it brief with words and a few pics. Sunday was simply amazing! Adam and I want to thank you for the lovely wish… Read More
2016-03-19 21:30
Today I marry Adam. I am so excited, nervous and happy. I think we both are. It's going to be amazing to see 60 of our closest family and friends we haven't seen in a while, all in one room… Read More
2016-03-14 03:03
I was asked to do a speech for International Women's Day. It was a panel speech, with four other talented, accomplished, experienced women. At the time of being asked, I didn't raise t… Read More
2016-03-06 20:00
I've been having my wedding dress fitted and altered. My dear dressmaker friend Jo is altering it - I've had about four appointments so far, with hopefully one more to go. We joked th… Read More
2016-02-28 20:57
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… Read More
2016-02-25 21:03
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 Sack… Read More
2016-02-24 00:31
I told a man I know that I didn't want to connect with him anymore, after one outburst too many from him. I said no, and he did not stop. I told him in a measured, polite tone, wishing him w… Read More
2016-02-17 21:48
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 f… Read More
2016-02-14 22:03
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 groomsma… Read More
2016-02-12 21:32
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 flatma… Read More
2016-02-10 21:01
"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… Read More
2016-02-08 02:00
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)… Read More
2016-02-03 20:00
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 Linc… Read More
2016-01-31 20:00
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 sh… Read More
2016-01-27 20:06
The dreamI 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 R… Read More
2016-01-25 07:08
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 manne… Read More
2016-01-20 20:36
(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 an… Read More
2016-01-17 20:10
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 amba… Read More
2016-01-14 18:58
"When you see photos, video clips etc with the line about "like = love" "ignore = hate" etc: Please be aware that the person who posted the picture probably has no ownership of the pic… Read More
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