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# Carly Findlay

Writer, speaker, appearance activist. Loving life!

## Sitemaps

- [XML Sitemap](https://carlyfindlay.com.au/sitemap.xml): Contains all public & indexable URLs for this website.

## Posts

- [ABC radio interview about Write Around the Murray](https://carlyfindlay.com.au/2026/09/11/abc-radio-interview-about-write-around-the-murray/) - Here is the interview I did with Alice Walker on ABC Goulburn Murray yesterday. I spoke about Write Around the Murray - happening now - and also shared a little update about the book I’m writing. There are so many amazing events at Write Around the Murray - and the kids’ sessions are free. My
- [Write Around the Murray](https://carlyfindlay.com.au/2026/09/09/write-around-the-murray/) - Write Around the Murray This morning I gave the opening speech for the 20th anniversary of Write Around the Murray. I was so honoured. I spoke of the way my parents and I would make up stories while I was having creams applied, my time reading books in the Mobile Library, discovering the internet in
- [Review - Jebediah - Are We OK? - an Australian music documentary](https://carlyfindlay.com.au/2026/08/26/review-jebediah-are-we-ok-an-australian-music-documentary/) - Last week I saw Jebediah - Are We OK? documentary at MIFF. The film documents 30 years of Perth born band Jebediah - formed in 1995, still playing strong. Jebediah comprises brothers Kevin Mitchell and Brett Mitchell, Ness Thornton and Chris Daymond. It covered so much - their quick rise to fame; the isolation of
- [Review: Boss Cat at Melbourne International Film Festival](https://carlyfindlay.com.au/2026/08/23/review-boss-cat-at-melbourne-international-film-festival/) - #Gifted / #Invited post: Yesterday I was invited to Boss Cat at the Melbourne International Film Festival. Boss Cat has been made by inclusive film company Bus Stop Films, and it is brilliant. My friend Saffy was my plus one. It’s funny, sad and raises the expectations and profile of disabled people. Sonja, played by
- [Burnout after cancer](https://carlyfindlay.com.au/2026/07/26/burnout-after-cancer/) - Hello. It’s been a big week on my social media - without me posting much. ABC shared an interview I did with Mum for 7.30 back in 2019 (7 years ago today!). It was a nice surprise to be featured again, and the comments have been supportive. I have gained hundreds of new followers -
- [Accusations of faking cancer are as hurtful as cancer fakers](https://carlyfindlay.com.au/2026/06/27/accusations-of-faking-cancer-are-as-hurtful-as-cancer-fakers/) - I’ve seen some chatter on Threads about a cancer faker. Ugh. What a low act. I also wrote extensively on cancer faker Belle Gibson and Apple Cider Vinegar. Accusations of faking cancer are as hurtful as cancer fakers. When I was diagnosed with Ovarian & Endometrial Cancer, and knowing that I’m a public figure I
- [Two year cancerversary - here’s what I’ve learnt about survivorship](https://carlyfindlay.com.au/2026/06/26/two-year-cancerversary/) - Today is two years since I had a full uterectomy and entered early menopause, and was diagnosed with Ovarian and Endometrial Cancer. It was a lot to get used to all at once, especially while recovering from major surgery. And treatment was really, really hard - particularly chemotherapy. I still have residual side effects (hello
- [Two years since pre-diagnosis of Ovarian Cancer](https://carlyfindlay.com.au/2026/05/27/two-years-since-pre-diagnosis-of-ovarian-cancer/) - Today marks two years since what I call pre-diagnosis of Ovarian Cancer. At 5.00 am, I arrived home from a seven and a half week overseas trip on a long haul flight. That afternoon I was sent to the hospital by my GP because I had alarming stomach swelling and pain from Singapore to Melbourne.
- [Face Equality Week 2026 - what to say to people who ask about your facial difference](https://carlyfindlay.com.au/2026/05/16/face-equality-week-2026-what-to-say-to-people-who-ask-about-your-facial-difference/) - It’s Face Equality Week and this year’s theme is Seen and Served - making sure people with facial differences are seen, served, respected and safe in retail and hospitality settings. All week I’ve been talking about what retail and hospo staff can do. But this post is about what people with facial differences can say
- [Face Equality Week 2026 - tips for hospitality staff to ensure people with facial differences are Seen and Served](https://carlyfindlay.com.au/2026/05/15/face-equality-week-2026-tips-for-hospitality-staff-to-ensure-people-with-facial-differences-are-seen-and-served/) - It’s Face Equality Week and the theme is Seen and Served - ensuring people with a facial difference are treated with dignity and respect in retail and hospitality settings. Today I’m focusing on hospitality settings - restaurants, cafes, bars, hotels and live music venues. There have been times when I’ve been to restaurants and staff have
- [Face Equality Week 2026 - how retail workers should  treat customers with facial differences](https://carlyfindlay.com.au/2026/05/14/face-equality-week-2026-how-retail-workers-should-treat-customers-with-facial-differences/) - It’s Face Equality Week and the theme is Seen and Served - ensuring people with a facial difference are treated with dignity and respect in retail and hospitality settings. I love to shop. I’d do it every day if I was millionaire. But it’s not always easy because of retail staff’s reaction to my skin condition
- [Face Equality Week 2026 - sobering stats about restaurants and retail experience](https://carlyfindlay.com.au/2026/05/13/face-equality-week-2026-sobering-stats-about-restaurants-and-retail-experience/) - It’s International Face Equality Week. These stats on discrimination, unwanted comments and staring are from the UK, but I suspect they’d be very similar here in Australia, and possibly higher in countries where facial difference is even more feared and stigmatised. 18% of adults with a facial difference have avoided restaurants, bars, pubs, cafes, hotels,
- [Face Equality Week 2026 - the times I have not been seen and served](https://carlyfindlay.com.au/2026/05/12/face-equality-week-2026-the-times-i-have-not-been-seen-and-served/) - It’s Face Equality Week and the theme is #SeenAndServed. It focuses on encouraging retail and hospitality spaces to become more welcoming and respectful to people with facial differences. Here’s when I haven’t been seen and served. In 2010, I was in Northcote, waiting for a tow truck to come get my broken down car. I
- [Face Equality Week 2026 - Seen and Served: code switching](https://carlyfindlay.com.au/2026/05/12/face-equality-week-2026-seen-and-served-code-switching/) - This week is International Face Equality Week. I’m a Face Equality International ambassador. Here’s more about the campaign in the post below. I want to share how relentless peoples reactions to my facial difference can be. At the supermarket this afternoon, I was holding a lot of groceries waiting for my fave cashier, trying not
- [Face Equality Week 2026 - Seen and Served](https://carlyfindlay.com.au/2026/05/12/face-equality-week-2026-seen-and-served/) - I am an ambassador for Face Equality International (FEI), and this week is an important week for Facial Difference advocacy. From FEI: “International Face Equality Week is a global moment each May dedicated to celebrating and supporting the Facial Difference community, and to call for a world where everyone is treated with fairness, dignity and
- [Witchery White Shirt Day - World Ovarian Cancer Day](https://carlyfindlay.com.au/2026/05/08/witchery-white-shirt-day-world-ovarian-cancer-day/) - Today is World Ovarian Cancer Day. It’s also Witchery White Shirt Day - you can purchase a white shirt, designed by St Agni, and profits go to support Ovarian Cancer Research. In the 18 years since it began, the White Shirt Campaign has raised over $18M, funding research including clinical trials. On Tuesday I attended
- [Heating (and cooling) is an access need](https://carlyfindlay.com.au/2026/05/07/heating-and-cooling-is-an-access-need/) - Heating (and cooling) is an access need. Truly. Today’s temperature in Melbourne was a top of 11 degrees Celsius, it felt like 7. It was very cold. For some of the day, I worked in a very cold, old building. I drove to where I needed to be, rather than catching the train, as I
- [My disability horror movies](https://carlyfindlay.com.au/2026/05/04/my-disability-horror-movies/) - My disability-related horror movies!. Missing the sleep window at 10.30 pm and staying awake til 2.00 am Being asked if I could be pregnant while having radiotherapy on my pelvis for ovarian cancer Being asked if I know the abusive man with ichthyosis Seven attempts to find a vein Sitting outside at dinner Being told
- [Carly, what were you like in the 90s?](https://carlyfindlay.com.au/2026/05/04/carly-what-were-you-like-in-the-90s/) - “And I don’t want the world to see me, I don’t think that they’d understand.” Ooft. That’s exactly how I felt when Iris was released, and for the duration of my life prior to its release. Making this video, I sorely wish there were more photos of me in the 90s. I was gangly and
- [My changing body shape](https://carlyfindlay.com.au/2026/05/03/my-changing-body-shape/) - CW: discussion of weight and body image I went to Pilates this morning. I haven’t been going as much as I did last year, but that needs to change. I need to schedule exercise through the week the same way I’d schedule a meeting. I haven’t been feeling as good in my body as last
- [I’ve written for a new book -   Digital Accessibility Ethics: Disability Inclusion in All Things Tech](https://carlyfindlay.com.au/2026/04/29/ive-written-for-a-new-book-digital-accessibility-ethics-disability-inclusion-in-all-things-tech/) - I am so excited for this book - Digital Accessibility Ethics: Disability Inclusion in All Things Tech, edited by Lainey Feingold, Reginé Gilbert, and Chancey Fleet. It’s out worldwide 6 May. I wrote a chapter in it - my chapter is about facial difference and AI. I have shared my own experiences with international travel,
- [Who gets to use the accessible toilet?](https://carlyfindlay.com.au/2026/04/25/who-gets-to-use-the-accessible-toilet/) - I saw a podcast clip featuring a disabled man questioning whether someone else should use an accessible toilet. He said the person queuing for the accessible toilet didn’t look disabled. So he pushed ahead, telling them they don’t look disabled. The recounting of the story went like this: “there was a disabled toilet, and I
- [Book review: Like, Follow, Subscribe: Influencer Kids and the Cost of a Childhood Online by Fortesa Latifi](https://carlyfindlay.com.au/2026/04/20/book-review-like-follow-subscribe-influencer-kids-and-the-cost-of-a-childhood-online-by-fortesa-latifi/) - I am back reading again (yay!). Feels good! I devoured Like, Follow, Subscribe: Influencer Kids and the Cost of a Childhood Online by Fortesa Latifi. This book was excellent - well researched, alarming, nuanced and well written. I’ve been very vocal about my thoughts about parents oversharing about disabled kids online (and also their grief
- [On poor representation of Ichthyosis - by people within the community](https://carlyfindlay.com.au/2026/02/21/on-poor-representation-of-ichthyosis-by-people-within-the-community/) - I often talk about the importance of good representation of Ichthyosis. I don’t mean only positive stories. I mean, when our stories are told by people with Ichthyosis, when headlines and articles aren’t sensationalised and stigmatising, and when there’s advocacy for the community as a whole. This week I read a story of life with
- [25 highlights of 2025](https://carlyfindlay.com.au/2025/12/31/25-highlights-of-2025/) - 25 wonderful things that happened to me in 2025: 1 Starting Yoga and Pilates 2 Finding out I’m cancer free - my cancer level markers continue to be miraculously low 3 Seeing the Yayoi Kusama exhibition at NGV 4 Filming A Bite To Eat with Alice for ABC 5 Enjoying beautiful friendships, inc making new
- [Frocktober: calling for more government support for people who suddenly get sick](https://carlyfindlay.com.au/2025/11/01/frocktober-calling-for-more-government-support-for-people-who-suddenly-get-sick/) - •FROCKTOBER• It’s Halloween. And this is scary. There is no government support for people who suddenly get sick. The fair go for Australians doesn’t exist. We need a safety net. Sickness Allowance no longer exists. The Disability Support Pension doesn’t cover people who have cancer, unless they are terminal with a life expectancy of less than
- [Book review: Em Rusciano’s Blood, Sweat and Glitter](https://carlyfindlay.com.au/2025/10/22/book-review-em-ruscianos-blood-sweat-and-glitter/) - Last week when I was at SXSW Sydney, I bought a sneaky copy of Em Rusciano’s memoir, Blood, Sweat and Glitter. It’s not out til next week - it wasn’t meant to be on sale. I devoured half of it on the plane home from Sydney. It is a vulnerable, brave, bold and funny insight
- [Frocktober - in my pyjamas and raising awareness of cancer and Ichthyosis](https://carlyfindlay.com.au/2025/10/19/frocktober-in-my-pyjamas-and-raising-awareness-of-cancer-and-ichthyosis/) - •FROCKTOBER• Frock it! I’m in my pyjamas! When I was told I probably have cancer and if I had a uterectomy, I’d go into early menopause, I googled “Ichthyosis and cancer” and “ichthyosis and menopause”. I wanted to know the impact of cancer, cancer treatment and menopause on the rare severe skin condition that I
- [Frocktober - am I out of the woods?](https://carlyfindlay.com.au/2025/10/19/frocktober-am-i-out-of-the-woods/) - Just because I’m cancer free now, it doesn’t mean life has returned to normal. To the way it was before cancer. I have so many hangovers from chemotherapy and radiotherapy. Some of the symptoms I’ve had since cancer treatment include Neuropathy/carpal tunnel syndrome: I had numbness in my fingers and pins and needles from my
- [Frocktober - symptoms and facts](https://carlyfindlay.com.au/2025/10/23/frocktober-symptoms-and-facts/) - •FROCKTOBER• I wish I knew this info in early 2024, when my cancer symptoms started appearing. The least I can do is pass the message on to people with ovaries. I would love you to save and share this post please. It could save a life. My dress is from @aje, styled by @mutabazi_k for
- [Frocktober - am I angry?](https://carlyfindlay.com.au/2025/10/15/frocktober-am-i-angry/) - •FROCKTOBER• Am I angry that I got Ovarian Cancer? When it comes to my skin condition, I’m very pragmatic. It is what it is. But cancer - I feel a bit differently. I don’t think I’ve really bawled or screamed since I was told I probably had, and then it was confirmed that I had
- [Frocktober - the BRCA genes](https://carlyfindlay.com.au/2025/10/13/frocktober-the-brca-genes/) - •FROCKTOBER• I’m frocking up to show support for ovarian cancer research . Around 20% of ovarian cancer cases are hereditary, caused by mutations in genes such as the BRCA1 or BRCA2 genes. Vital research helps researchers better understand ovarian cancer so crucial developments can be made in diagnosis and treatment, including precision medicine. The day
- [Frocktober - what to say to a friend who has cancer](https://carlyfindlay.com.au/2025/10/18/frocktober-what-to-say-to-a-friend-who-has-cancer/) - Here are some things to say to or do for someone who has been diagnosed with cancer or another serious illness. Say “I’m sorry. I’m here for you when you need.” Acknowledge how shit this is. Check in regularly - a text to say you’re thinking of them, ask how they are, send them a
- [Frocktober - Ovarian Cancer snuck in quietly](https://carlyfindlay.com.au/2025/10/19/frocktober-ovarian-cancer-snuck-in-quietly/) - Ovarian Cancer didn’t announce itself with a loud, flashing alarm. It quietly snuck into my body, in late January 2024, when I experienced the first symptom - diarrhoea. I was going to the toilet so much. (Normalise talking about poo. I still can’t spell diarrhoea - this took me five attempts.) Then I experienced feeling full
- [Frocktober - fatigue and brain fog](https://carlyfindlay.com.au/2025/10/11/frocktober-fatigue-and-brain-fog/) - My body and mind has not been the same since surgery and cancer diagnosis, treatment and menopause. My surgery and beginning of menopause was in June 2024, chemo was from August to October 2024, and radiotherapy was from November to December 2024. Life has not returned to how it was pre cancer, and that is
- [Frocktober: Ovarian Cancer is a complex disease](https://carlyfindlay.com.au/2025/10/30/frocktober-ovarian-cancer-is-a-complex-disease/) - Did you know: Ovarian cancer is an umbrella term for more than 30 different subtypes, which vary by cell of origin, genetic mutations, and therefore, how they respond to various therapies although options are limited. Your support can find better treatments for this complex disease. My fundraiser page is here.Thank you! I’m wearing an old
- [Frocktober - fabulous footwear](https://carlyfindlay.com.au/2025/10/22/frocktober-fabulous-footwear/) - Why your donations are more important than ever? Sadly, between 12,500 and 16,000 years of life are lost to ovarian cancer every year in Australia. Let’s frocking change this! Head to my Frocktober donation page to be part of the change. You can donate to my Frocktober fundraiser - https://www.frocktober.org.au/fundraise/carly-findlay (link in bio). Thank
- [Frocktober - why an early detection test is vital](https://carlyfindlay.com.au/2025/10/25/frocktober-why-an-early-detection-test-is-vital/) - This is why frocking up for research is so important! If ovarian cancer is diagnosed at stage 1 (when the cancer is confined to the ovaries or fallopian tubes), the five-year survival rate is around 90%. There is still no early detection test for ovarian cancer so funding for research is pivotal to raising survival
- [Frocktober - $2000!](https://carlyfindlay.com.au/2025/10/07/frocktober-2000/) - Two posts in a day - to celebrate reaching $2000 on my Frocktober fundraising campaign. Thank you to everyone who has donated, shared posts, commented and spread the word! Your support means so much. My fundraiser has been shared by politicians to drag queens and everyone in between. Mum has traipsed Dean St in Albury,
- [Frocktober - monochrome Monday](https://carlyfindlay.com.au/2025/10/06/frocktober-monochrome-monday/) - •FROCKTOBER• Why we need to progress research for Ovarian Cancer: Regular pelvic ultrasounds are not effective as a population screening tool for ovarian cancer in asymptomatic women and are not recommended for this purpose. A transvaginal ultrasound (TVU) can detect masses in the ovary; however, it cannot distinguish between benign and cancerous disease. We need
- [Frocktober - on activism](https://carlyfindlay.com.au/2025/10/05/frocktober-on-activism/) - This week I ended a friendship - for a few reasons. One was an accusation that I am not doing much public activism… What you see on social media is only some of the activism I do. I work to create space in the arts for Disabled artists. I write. I meet with politicians and
- [Frocktober: an unfamiliar body](https://carlyfindlay.com.au/2025/10/08/frocktober-an-unfamiliar-body/) - •FROCKTOBER• Something that I’ve written a lot about since I had surgery and was diagnosed with Ovarian and Endometrial Cancer last year is the change in my body shape and size. I lost a lot of weight, and a lot of muscle and strength. My body was unrecognisable to me. Some of my clothes would
- [Frocktober: day one - glitter bomb](https://carlyfindlay.com.au/2025/10/01/frocktober-day-one-glitter-bomb/) - Day one of Frocktober. Glitter bomb. I guess you could say cancer was like a glitter bomb. Less glitter, though. In June 2024, I was diagnosed with Ovarian and Endometrial Cancer. It turned my life upside down - I never expected the symptoms I was having would mean it was cancer. I had a full
- [Frocktober: day 7](https://carlyfindlay.com.au/2025/10/07/frocktober-day-7/) - Why Frocking up and fundraising for research is so important: Due to the vague symptoms and lack of early detection test, about 70% of people with ovarian cancer are diagnosed in the advanced stages, when it becomes difficult to treat. Your generous support can help researchers continue their work to develop early detection methods. My
- [Frocktober: fear of recurrence](https://carlyfindlay.com.au/2025/10/02/frocktober/) - Donate to make a difference! For people diagnosed with late-stage ovarian cancer, even after successful treatment and going into remission, the chances of recurrence are around 80%. Once there is a recurrence, the chances of long-term survival are low. Head to my Frocktober page to donate and help develop better treatments to change this statistic.
- [Frocktober: Vintage memories](https://carlyfindlay.com.au/2025/10/20/frocktober-vintage-memories/) - The more you know, the more you understand the impact of your support. Ovarian cancer can impact any woman or person with ovaries at any age and stage of life, from young girls to older people. According to the most recent data available, around 40% of cases are diagnosed in women under 60 years oldDonate
- [Frocktober: reflections on the head turning hats I wore during cancer treatment](https://carlyfindlay.com.au/2025/10/12/frocktober-reflections-on-the-head-turning-hats-i-wore-during-cancer-treatment/) - Today’s Frocktober prompt is “head turning hats”. Surprisingly, the easiest part of my cancer treatment was losing my hair. While I was scared because my hair is brittle and slow growing due to my Ichthyosis, it was the opposite during chemo. It did fall out after my first round, but it didn’t hurt, my scalp
- [Frocktober: denim dress and scary stats](https://carlyfindlay.com.au/2025/10/10/frocktober-denim-dress-and-scary-stats/) - Help me raise funds to change the stats. 1800 Australian women and girls are diagnosed with ovarian cancer every year. Ovarian is the most lethal gynaecological cancer and more than half of those diagnosed will be alive in five years’ time. Research is the only way to change this!That’s why I am frocking up -
- [Frocktober: know the symptoms of Ovarian Cancer](https://carlyfindlay.com.au/2025/10/03/frocktober-know-the-symptoms-of-ovarian-cancer/) - •FROCKTOBER• Know what Ovarian Cancer symptoms to look for. I ticked the symptoms I had leading up to my Ovarian and Endometrial Cancer diagnoses in June 2024 in the list below. From Jean Hailes: “Ovarian cancer is hard to detect in the early stages. It usually doesn’t cause symptoms until the cancer is quite large.
- [Frocktober: floral fun](https://carlyfindlay.com.au/2025/10/04/frocktober-floral-fun/) - •FROCKTOBER• Let’s bust some myths and get informed 🤓 Pap smears or cervical screenings cannot detect ovarian cancer. Currently, there is no early detection test for ovarian cancer and the only way to definitely diagnose it is through surgery. Funds raised throughout Frocktober go toward research projects, including diagnostics and early detection. I underwent so
- [Frocktober: my fave frock](https://carlyfindlay.com.au/2025/10/29/frocktober-my-fave-frock/) - Frocking up my way to support ovarian cancer research. Did you know that the Ovarian Cancer Research Foundation (OCRF) was established in 2000 and is the leading independent funder of ovarian cancer research in Australia.They seed-fund brilliant scientists across the nation to develop ways to better detect, treat and prevent ovarian cancer. Your donation dollars
- [Frocktober: Gorgeous greens](https://carlyfindlay.com.au/2025/10/27/frocktober-gorgeous-greens/) - Putting the fabulous into fundraising for ovarian cancer research 👗💲💚 And this is how your Frocktober donations help researchers: $36 helps to secure vital resources needed to collect and analyse patient samples, $58 supports researchers to grow ovarian cancer cells, giving them the opportunity to study the disease, $100 supports research to analyse the DNA
- [Frocktober: no more shame and perfect pants](https://carlyfindlay.com.au/2025/10/28/frocktober-no-more-shame-and-perfect-pants/) - Some people have asked if I embarrassed to talk about my cancer - specifically because it has to do with parts of the body that are often kept private. Ovarian cancer is about reproductive organs and gynaecological health. Look, before I was diagnosed with Ovarian and Endometrial Cancer in June 2024 , I very rarely
- [Frocktober: Island paradise](https://carlyfindlay.com.au/2025/10/21/frocktober-island-paradise/) - Life-saving research starts right here 👇🏽 Fundraising campaigns like Frocktober, generate vital funds for major research grants. In 2025, the Ovarian Cancer Research Foundation announced over $3.5 million in new grants for potentially life-saving research, all of which was raised by the Australian community. My Frocktober fundraiser link is here. If you can’t donate, please
- [Frocktober: Stripes](https://carlyfindlay.com.au/2025/10/09/frocktober-stripes/) - •FROCKTOBER• Did you know that Frocktober began 17 years ago? Blending fashion with fundraising, a group of ten friends joined forces to raise $200 for ovarian cancer research in the first year. It’s since gone from strength to strength, and in 2024, the campaign raised more than $1.1 million in funds for ovarian cancer research
- [Frocktober: Tulle Tuesday and the Ovarian Cancer Australia community forum](https://carlyfindlay.com.au/2025/10/14/frocktober-tulle-tuesday-and-the-ovarian-cancer-australia-community-forum/) - In August I attended the Ovarian Cancer Australia community forum. I am so glad I did. I wasn’t going to, as I was really feeling the fatigue from cancer treatment and the mental load of all I’ve been through over the last year or so, but I feel better for attending. At the forum, we
- [Coming up: Frocktober](https://carlyfindlay.com.au/2025/09/30/coming-up-frocktober/) - All through October, I’ll be frocking up, to raise money and awareness for Ovarian Cancer research. This is my second year participating in Frocktober - an initiative by the Ovarian Cancer Research Foundation. I’ve been named an ambassador in 2025, and I am very proud to be one. Last year I was diagnosed with Ovarian
- [On the Down Low podcast - Endometrial Cancer](https://carlyfindlay.com.au/2025/09/18/on-the-down-low-podcast-endometrial-cancer/) - I spoke with Alison Dance on the On The Down Low podcast - Speaking Up About Gynaecological Cancer, created by Australia and New Zealand Gynaecological Cancer Group. This season is about Uterine Cancer. I was diagnosed with Endometrial Cancer, alongside Ovarian Cancer. Episode one is out now. It focuses on risk factors and causes of
- [Come join my Frocktober team!](https://carlyfindlay.com.au/2025/09/12/come-join-my-frocktober-team/) - Come join my Frocktober team! I am pleased to be an ambassador for Frocktober 2025 - doing one of my favourite things for charity: wearing a frock (or two) every day in October. I’ll be posting my Frocktober outfits on my social media, with facts about Ovarian Cancer, and a call for donations to the
- [I want to work with you!](https://carlyfindlay.com.au/2025/07/28/i-want-to-work-with-you/) - I’m looking for some work! I’d like to supplement my part time job, so I’m looking for one off gigs like: - speeches, MCing, training at conferences, team building days, awards etc (specialising in topics of resilience, diversity, disability, writing, feminism, cancer, menopause, the arts) - writing articles and copy; - editing; -social media content
- [Skin cancer - another cancer diagnosis](https://carlyfindlay.com.au/2025/07/21/skin-cancer-another-cancer-diagnosis/) - I said no more cancer.But. I got another cancer diagnosis last week.Skin cancer. A sore on my forehead had been bothering me for more than a year.The diagnosis was uneventful. The dermatology registrar called me on a Tuesday afternoon. She gave me the results of the biopsy on my forehead, less than a week prior.It’s
- [Can I speak to the manager?](https://carlyfindlay.com.au/2025/07/19/can-i-speak-to-the-manager/) - At the deli, waiting to buy five chicken thighs. The customer next to me takes a long time, asking for bones for her dog. “The dog will shoot me if I give it chicken thighs that small”, she says, and we both laugh. By the time the supermarket worker gets to me, this has become
- [Six useful resources about menopause](https://carlyfindlay.com.au/2025/07/14/six-useful-resources-about-menopause/) - Last year I was suddenly launched into early menopause just after a hysterectomy and a diagnosis of ovarian and endometrial cancer. Recovering from major surgery, chemo brain fog and getting used to my new body meant that I was in no place to learn about menopause. Before my hysterectomy and diagnosis, I was told it was
- [Whiplash](https://carlyfindlay.com.au/2025/07/13/whiplash/) - I’m feeling really tired. Physically and emotionally. I chatted with someone recently and they said “no offence, Carly, but you’ve been through a lot”. True. As Princess Catherine said recently, life after cancer doesn’t feel normal. I’m trying to work as much as I can, and do social and domestic things. I’m trying to build
- [Today is one year since cancer diagnosis](https://carlyfindlay.com.au/2025/06/26/today-is-one-year-since-cancer-diagnosis/) - Today is one year since I had a hysterectomy, and one year since I waa diagnosed with Ovarian and Endometrial Cancer. A year is both a short time and a long time, and I am still processing all that happened. I went from “you probably have cancer” to “you do have cancer” to chemotherapy and
- [First bloods since cancer treatment](https://carlyfindlay.com.au/2025/06/17/first-bloods-since-cancer-treatment/) - How incredible is modern medicine?! I just got some blood test results back. The oncologist was right to be confident when she said I’m cancer free in January, following surgery, four rounds of chemo and 25 sessions of radiotherapy. Cancer markers were down significantly. They went from a five digit figure when I was diagnosed,
- [What I owe people](https://carlyfindlay.com.au/2025/06/16/what-i-owe-people/) - As my one year anniversary of surgery and cancer diagnosis comes closer, I’ve been reflecting on how much of myself I’ve given. Writing has been a way to process it all, and also to educate and raise awareness - particularly because when I was told I might have cancer, there was no info on cancer
- [A fun photoshoot to mark the end of Face Equality Week](https://carlyfindlay.com.au/2025/05/19/a-fun-photoshoot-to-mark-the-end-of-face-equality-week/) - It’s the last day of Face Equality Week. From having nothing planned, I certainly did write some posts! There’s a line in Savage Garden’s Affirmation that says “I believe that beauty magazines promote low self esteem.” It resonates. All those magazines I read when I was younger, I never saw the representation I needed -
- [How to beat jet lag: go to hospital and be told you probably have cancer](https://carlyfindlay.com.au/2025/05/27/how-to-beat-jet-lag-go-to-hospital-and-be-told-you-probably-have-cancer/) - Feeling pretty proud of myself to have made it through a whole year. One of the hardest times of my life - definitely the most uncertain, the most painful and the lowest my mental health has been. A year ago today, I arrived home from France and South Africa. I got home at 7.00 am,
- [She didn’t know it then](https://carlyfindlay.com.au/2025/05/25/she-didnt-know-it-then/) - She didn’t know it then, but in two days, her life would be changed forever. This selfie was taken one year ago today. About to leave France - taking three flights back to Australia. Montpelier, Paris, Singapore. Looking radiant, feeling relaxed. So happy, filled with memories of seven and a half weeks of travel. She
- [Pain at the airport](https://carlyfindlay.com.au/2025/05/26/pain-at-the-airport/) - A year ago tonight, I was flying back to Melbourne after feeling unwell in Singapore airport. My stomach was so swollen and painful. It hurt to breathe. I couldn’t walk to the airline departure gate. I pretended I was fine to get home to Melbourne. I thought I had worsened my reported hernia* with carrying
- [Face Equality Week - calling for respect](https://carlyfindlay.com.au/2025/05/14/face-equality-week-calling-for-respect/) - CW: ableism, death threats, suicide. Lifeline: 131114. This Face Equality Week, I call for people with facial differences to be treated with equality, dignity, respect and safety. I don’t want people with facial difference to be discriminated against, excluded, ridiculed, forced to reveal medical information or relive traumatic events to satisfy strangers’ curiosity, or endure
- [Face Equality in the Arts](https://carlyfindlay.com.au/2025/05/13/face-equality-in-the-arts/) - It’s Face Equality Week and the theme is My Face is a Masterpiece. As an artist and arts worker with a facial difference, I want to talk about face equality in the arts. The arts is broad - including performance art, visual art, music, writing, circus, dance and even media like film, TV, radio, podcasts
- [Face Equality Week 2025](https://carlyfindlay.com.au/2025/05/13/face-equality-week-2025/) - It’s Face Equality Week from 12 - 19 May. The theme, for the second year in a row, is “My Face is a Masterpiece, My Body is a Masterpiece”. From Face Equality International: “The stories of the facial and visible difference community are often portrayed with pity and prejudice. When this is a vibrant and
- [World Ovarian Cancer Day 2025](https://carlyfindlay.com.au/2025/05/08/world-ovarian-cancer-day-2025/) - Today 8 May is World Ovarian Cancer Day. Here are some thoughts. It’s almost a year since I was diagnosed with Ovarian and Endometrial Cancer. Seven months after surgery, diagnosis and treatment (chemotherapy and radiotherapy), I was declared cancer free. It all happened so quick, my friend joked that I was efficient in kicking cancer
- [Neuropathy post chemotherapy = Carpal Tunnel Syndrome](https://carlyfindlay.com.au/2025/04/17/neuropathy-post-chemotherapy-carpal-tunnel-syndrome/) - An update on my neuropathy: Neuropathy in my hands has continued since November, post chemotherapy. It’s especially painful at night when I get constant pins and needles - even with meds which have improved it significantly. I had some tests done by a Neurophysician at the RMH last week. They were little shocks on my
- [Life changes quickly](https://carlyfindlay.com.au/2025/04/05/life-changes-quickly/) - Next week marks a year since I went overseas with my Mum. We went to South Africa and France on a research/influencer holiday. It was life changing and I am currently focusing on writing up what I learnt in South Africa, and picking up work with the brand where I left off. The anniversary of
- [Breaking Barriers speech](https://carlyfindlay.com.au/2025/04/02/breaking-barriers-speech/) - Today I speak on Wurundjeri and Boon Wurrung lands, in the Eastern Kulin Nations. I pay my respects to First Nations elders, past and present, and I extend my friendship to any First Nations people in the room today. Thank you to Murrundindi for the incredibly beautiful Welcome to Country. As a writer and arts
- [Neurodiversity Celebration Week](https://carlyfindlay.com.au/2025/03/20/neurodiversity-celebration-week/) - It’s neurodiversity celebration week! I am Neurodivergent. I have a partial ADHD diagnosis. It’s partial (or provisional) because it costs a lot of money to get an assessment for a full diagnosis, and getting that assessment was marred by a more urgent diagnosis and treatment. In 2022 we moved house, and a friend with ADHD
- [What gifts should you give a friend who’s having cancer treatment?](https://carlyfindlay.com.au/2025/03/18/what-gifts-should-you-give-a-friend-whos-having-cancer-treatment/) - I regularly see questions about what to get a friend who is going through cancer treatment. Here’s what helped me as I underwent surgery, chemotherapy, radiotherapy and various tests in 2024. Meal vouchers - UberEats, DoorDash, MenuLog were great. Dinner Ladies vouchers were fabulous for homestyle meals. Laundry service vouchers. I do a lot of
- [When parents grieve their disabled child.](https://carlyfindlay.com.au/2025/03/15/when-parents-grieve-their-disabled-child/) - Content warning: ableism, suicide, death This is from the audiobook of a chapter of my memoir, Say Hello - the chapter is called “Grief (and hope)”. It’s a long piece of audio, but please stick with it, and share. It’s about the impact of parental grief on me and other disabled people. I thank the
- [Even if you’re curious, just don’t ask](https://carlyfindlay.com.au/2025/03/08/even-if-youre-curious-just-dont-ask/) - I’ve made a handy video in case you see someone with a skin condition or a disability - because I was rudely interrupted by a stranger after a great Pilates class this morning. You’re welcome. 🎀Video: Carly, a woman with red skin and short dark curly hair, wearing a Hello Kitty dress, speaking to camera
- [Ichthyosis, cancer and Rare Disease Day](https://carlyfindlay.com.au/2025/02/28/ichthyosis-cancer-and-rare-disease-day/) - Today (28 February) is Rare Disease Day. I have a type of Ichthyosis called Netherton’s Syndrome, which is a rare genetic skin condition. (For less confusion, I will refer to it as Ichthyosis.) I was born with it. It means my skin is red, scaly, inflamed and prone to pain and infection. My body doesn’t
- [My thoughts on Apple Cider Vinegar - Netflix](https://carlyfindlay.com.au/2025/02/16/my-thoughts-on-apple-cider-vinegar-netflix/) - I’ve been watching Apple Cider Vinegar - the Netflix series based on Belle Gibson’s life. It’s billed as a true story based on a lie”. The series comes off the back of the book investigating Belle Gibson - The Woman who Fooled the World by two Age Journalists - Beau Donnelly and Nick Toscano. (They talk
- [All Aboard the Feelings Express and The Confidence Code: A Little Book About Courage”- Kids books on confidence and feelings by Ashley Ellis-Smith](https://carlyfindlay.com.au/2025/02/13/all-aboard-the-feelings-express-and-the-confidence-code-a-little-book-about-courage-kids-books-on-confidence-and-feelings-by-ashley-ellis-smith/) - One of my friends and colleagues, Ashley Ellis-Smith, is a social worker, as well as a writer and illustrator. She’s also neurodivergent, and specialises in working with neurodivergent children. She has just written and illustrated two kids books while on maternity leave - superwoman! The books are about exploring feelings and developing confidence, suitable for
- [Please don’t ask me to work for free - the 2025 edition](https://carlyfindlay.com.au/2025/02/13/please-dont-ask-me-to-work-for-free-the-2025-edition/) - Your annual reminder: Please don’t ask me to work for free. It’s 13 February and I’ve had several requests to work for free already. It’s incredibly offensive to ask disabled women of colour to perform free labour. (I’m not just talking about me here.) I value my knowledge, skills, education, lived experience and my community
- [Mentally wobbly](https://carlyfindlay.com.au/2025/02/12/mentally-wobbly/) - I’ve been feeling wobbly these last few days. Mentally wobbly - my body feels much stronger and more flexible thanks to doing half frog and happy baby poses at yoga on Monday! I have felt worried about my cancer returning, because there’s such a high likelihood of recurrence with the type I had. Being told
- [More on menopause - research, wrinkles and jump scares](https://carlyfindlay.com.au/2025/02/10/more-on-menopause-research-wrinkles-and-jump-scares/) - Menopause discussion part two: My last post was about menopause - and I’ve got a little more to say. I am a geriatric millennial and it seems everyone in my millennial/Gen X my friendship groups are talking about menopause. Mostly perimenopause. Before my hysterectomy, I had not researched menopause much because I thought I had
- [Hair growth and menopause update](https://carlyfindlay.com.au/2025/02/10/hair-growth-and-menopause-update/) - Hair growth and menopause update! I looked in the mirror today and marvelled at how my hair is growing - happy with the curls. It’s always been on the wavier side of curly, but now, it’s creeping into Afro curly, and I love it. I have South African heritage, and I’ve admired my Mum’s Afro
- [Unlovable - Darren Hayes’ memoir.](https://carlyfindlay.com.au/2024/10/26/unlovable-darren-hayes-memoir/) - Gifted post: It’s been a while since I’ve stayed up past 1.30 am reading a paperback book from cover to cover. Unlovable - Darren Hayes’ memoir - details his career as a very successful singer songwriter. Even more so, it delves into the violent trauma he and his family have experienced; his mental illness and
- [Some thoughts on World Cancer Day](https://carlyfindlay.com.au/2025/02/04/some-thoughts-on-world-cancer-day/) - Today is World Cancer Day. I’m thinking about how it was around this time last year that I started to get symptoms - just after a stressful house move. I went to the doctor and got tests for bowel conditions - but nothing alarming came up in the results. I noticed a hard lump on
- [More thoughts on World Cancer Day](https://carlyfindlay.com.au/2025/02/04/more-thoughts-on-world-cancer-day/) - Oh, I had set out to write something completely different. What I meant to say was: I have spent a long time thinking about the “look” of cancer. Not surprising given I’m an appearance activist. I feel really lucky that I wasn’t sad or self conscious when I lost my hair. I had my whole
- [Book me to speak for International Women’s Day](https://carlyfindlay.com.au/2025/02/02/book-me-to-speak-for-international-womens-day/) - I am keen to speak at your International Women’s Day events! IWD is 8 March - I’m available throughout the month. I can do a keynote plus q+a, or panel events. Topics I cover include disability and accessibility, appearance diversity, inclusive fashion, feminism, the arts, writing, and having cancer and entering early menopause. And I
- [Post chemotherapy hair growth progress!](https://carlyfindlay.com.au/2025/01/25/post-chemo-hair-growth-progress/) - Last year I was diagnosed with cancer and I had surgery and treatment. I had chemotherapy and radiotherapy. One of the two drugs they used for chemo made my hair fall out. I had a really bad time with the first chemotherapy round, and they removed the aforementioned drug and gave me three more
- [Good health news!](https://carlyfindlay.com.au/2025/01/24/good-health-news/) - Got some good health news this week. My oncologist told me I’m cancer free! I am nervously excited. It’s a little hard to believe, and my body is still feeling some effects of chemotherapy and radiotherapy. Thank you for everyone who has shown such incredible support these last eight months. Your kindness, encouragement and generosity
- [Post chemo and radiotherapy update](https://carlyfindlay.com.au/2025/01/18/post-chemo-and-radiotherapy-update/) - Lots of people have asked me how I’m feeling lately. It’s a little over a month since I finished five weeks of radiotherapy, and a little over three months since my last dose of chemotherapy. I am good. I am happy. The main side effect that’s hanging around is neuropathy in my fingertips during the
- [Having cancer gave me so many gifts in 2024 (even though it was a very hard time)](https://carlyfindlay.com.au/2024/12/31/having-cancer-gave-me-so-many-gifts-in-2024-even-though-it-was-a-very-hard-time/) - Even though seven months of this year was literal cancer, it wasn’t all bad. Part of me doesn’t want the year to end. My 2024 was filled with amazing moments a particularly 7.5 weeks of life changing travel; and so many people showed such kindness and generosity supporting me. I met most of my my
- [Thoughts on community at Christmas](https://carlyfindlay.com.au/2024/12/25/thoughts-on-community-at-christmas/) - Christmas makes me reflect on the year that’s been. What a year! This year’s been a hard one. I didn’t expect a cancer diagnosis, and certainly not major surgery and the brutality of chemotherapy - the latter causing the worst skin pain I’ve ever had. I didn’t expect to be off work for so long.
- [Hangovers from chemo](https://carlyfindlay.com.au/2024/12/16/hangovers-from-chemo/) - Even though my last dose of chemotherapy was administered over two months ago, I’m still experiencing side effects related to chemo. It’s quite annoying! For the last three weeks or so, I’ve had pins and needles in my arms and hands when I wake up. This is different to the neuropathy I had in my
- [Hurrah - the end of cancer treatment at the Peter Mac](https://carlyfindlay.com.au/2024/12/14/hurrah-the-end-of-cancer-treatment-at-the-peter-mac/) - Yesterday, after around five months of treatment at the Peter Mac, I finished treatment for ovarian and endometrial cancer. Prior to attending the Peter Mac, I had a hysterectomy at The Women’s. Here’s what happened while at the Peter Mac:A PET scan where in the lead up, I couldn’t move or speak!Tests to see how
- [Radiotherapy progress](https://carlyfindlay.com.au/2024/12/11/radiotherapy-progress/) - I am almost done with five weeks of radiotherapy. I realised I haven’t provided any updates on how I’m doing. I know I don’t owe anyone my medical details - but I’ve made a decision to be public about my experience with cancer and cancer treatment so that the next person with ichthyosis who is
- [Love in action](https://carlyfindlay.com.au/2024/12/06/love-in-action/) - I responded to this tweet, as it’s something I’ve been thinking about for a long time. My experience of cancer has been one where I’ve been shown so much love, generosity and kindness from near and far. The support has made a difficult six months or overwhelmingly easier - thank you. That isn’t to say
- [Cripmas Wishlist for the Government this International Day of People with Disability](https://carlyfindlay.com.au/2024/12/03/cripmas-wishlist-for-the-government-this-international-day-of-people-with-disability/) - I know International Day of People with Disability is about the disability community – but it doesn’t hurt to ask the Government to bring some gifts to the Cripmas party. Here’s my wishlist for the Government this Disability Day: To appoint a Disability Minister – who is actually disabled (and for there to be more
- [Some thoughts ahead of Disability Day 2024](https://carlyfindlay.com.au/2024/11/26/some-thoughts-ahead-of-disability-day-2023/) - I hesitated posting this, as I know it may read as me seeking sympathy, or may result in some mockery. But I don’t shy away from being vulnerable. And it’s not just about me. We are a week from International Day of People with Disability and it’s very quiet. It’s not just me feeling this way –
- [Me having cancer doesn’t mean your situation isn’t bad](https://carlyfindlay.com.au/2024/11/23/me-having-cancer-doesnt-mean-your-situation-isnt-bad/) - Just because I have cancer… please don’t diminish the severity of your medical condition or disability, and please don’t avoid telling me that you’re in good health. Me having cancer doesn’t take away from you having a difficult or wonderful time. I want to support and celebrate you. ❤️ Image, a selfie of Carly, a
- [Slow down](https://carlyfindlay.com.au/2024/11/18/slow-down/) - Slow down. I posted this text on my stories and it generated lots of discussions in my messages, so I’m posting here too. I want to talk about slowness as an access provision. I hate being rushed. At the supermarket when I’m packing my own bags. In a queue. Getting on and off a plane.
- [Anticipating the next part of my cancer treatment](https://carlyfindlay.com.au/2024/11/10/anticipating-the-next-part-of-my-cancer-treatment/) - It’s a huge week coming up for me. Tomorrow I commerce five weeks of radiotherapy. This is the (hopefully) final part of my cancer treatment - after surgery to remove the tumours and four rounds of chemotherapy. I know the process thanks to a practice run. I am worried about getting my hydration levels right
- [Boo! Did my face scare you? On facial difference and Halloween.](https://carlyfindlay.com.au/2024/10/29/boo-did-my-face-scare-you-on-facial-difference-and-halloween/) - It’s Halloween this week! I’m dressed as a flower! Boo! Did I scare you? I hope not. Because some people are scared by facial difference year round. Halloween costumes have a tendency to be scary - depicting facial differences in the form of scars, blood, redness and other disfigurements. These costumes create negative stereotypes for
- [Book news - Owning It](https://carlyfindlay.com.au/2024/10/21/book-news-owning-it/) - Some book news from me! I’ve written a chapter for • Owning It: Tales from our Disabled Childhoods, which is out on 24 April 2025. It’s edited by James and Lucy Catchpole, and Jen Campbell - who are disabled writers in the UK. “Growing up disabled can be an isolating experience. As much as you
- [Some thoughts on cancer survival statistics](https://carlyfindlay.com.au/2024/10/07/some-thoughts-on-cancer-survival-statistics/) - CW: death stats 🩵 FROCKTOBER 🩵 Today’s Frocktober prompt is sporty - I knew this was a good reason to put my skates on! It’s been ages since I’ve skated, and I want to do it again real soon. Baby strides 🛼 I’m wobbly on my skates, and my emotions were wobbly, after accidentally seeing
- [Book me to speak - International Day of People with Disability and beyond](https://carlyfindlay.com.au/2024/10/07/book-me-to-speak-international-day-of-people-with-disability-and-beyond/) - Book me to speak! Disability Day is just around the corner (3 December!). I am emerging into the world again. You can book me to speak at an event - I talk about disability rights, accessibility, media representation, writing and own voices, and my own story. I run training workshops in disability access & allyship
- [I am doing Frocktober!](https://carlyfindlay.com.au/2024/09/29/i-am-doing-frocktober/) - This October, I’m taking part in Frocktober: “Australia’s most fashionable fundraiser”. Frocktober raises vital funds for the Ovarian Cancer Research Foundation (OCRF). A couple of days after I had a hysterectomy and was diagnosed with Ovarian and Endometrial Cancer, I had an incredible spiritual care worker visit me in hospital. The visit was pretty life
- [Not recognising my body anymore](https://carlyfindlay.com.au/2024/09/26/not-recognising-my-body-anymore/) - Content warning: weight loss, changing body shape and size, chronic illness, cancer This is a wonderfully supportive community - with followers often sharing useful information based on their lived experience of disability and chronic illness. Today I am seeking your wisdom - I’m wondering how you’ve managed your body image if you’ve experienced significant weight loss
- [Angels exist](https://carlyfindlay.com.au/2024/09/22/angels-exist/) - Last night Adam and I had dinner with a new friend. One of the best parts of cancer has been the kindness of so many people - both from people I know, and strangers. When I arrived at Singapore airport, after seven weeks overseas, about to fly my last leg home to Melbourne, I got
- [Bushy eyebrows](https://carlyfindlay.com.au/2024/09/21/bushy-eyebrows/) - Amusingly, myeyebrows are the bushiest they’ve ever been, now my hair has fallen out. I laugh as I look in the mirror and wriggle them. Maybe a makeup brand will give me collab deal with an eyebrow brush and pencil 😜 Maybe she’s born with it. Maybe it’s chemo. 💚 Image: Carly, a woman with
- [Chemo - round 3](https://carlyfindlay.com.au/2024/09/20/chemo-round-3/) - I had my third chemo infusion today! Adam came with me this morning,to be my pack horse and hand holder. He said he needed a hot pack to recover from my hard squeeze. I took the beautiful quilt made by the Peter Mac volunteers today, given to me before my first appointments with the oncologists.
- [Cost of Living - Melbourne Theatre Company](https://carlyfindlay.com.au/2024/09/20/cost-of-living-melbourne-theatre-company/) - Gifted post: I was lucky to be invited to the premiere of Cost of Living, a Melbourne Theatre Company production, last night. I went with my friend and colleague Amelia. A show about class and caring: love and loss, Cost of Living puts disability on the main stage. It was heavy throughout, punctuated with
- [Feeling like myself](https://carlyfindlay.com.au/2024/09/18/feeling-like-myself/) - For the last week or so, I’ve felt the most like myself since late May. The side effects of chemo have been minimal - just sore skin. I’ve been able to get out and walk, and even do some weights and squats to help rebuild muscle. I’ve cooked and eaten good food. I’ve been out
- [Sashimi at last](https://carlyfindlay.com.au/2024/09/18/sashimi-at-last/) - Today’s lunch is brought to you by a high white blood cell count! Chemo has meant I have had to avoid some of my favourite foods from after the infusion until I meet with my oncologist and get my blood test results - almost three weeks later. This is because there’s a high risk of
- [Bald](https://carlyfindlay.com.au/2024/09/10/bald/) - I feel lucky that having a visible difference my whole life has meant I wasn’t scared about how I’d look after losing my hair during chemo.I really like it. My head is a lovely shape. I haven’t mourned my hair, even through it took so long to grow. My scalp feels very soft, and
- [How I feel after the second round of chemo](https://carlyfindlay.com.au/2024/09/09/how-i-feel-after-the-second-round-of-chemo/) - This round of chemo has been rather symptom-less, compared to last time. The oncologist removed one of the drugs completely, which she suspected caused the most physical and mental trauma for my body and mind. This time, there’s been no neuroapthy; no weird tastes in my mouth; no sore throat, cough or loss of voice;
- [Fashion is giving me joy](https://carlyfindlay.com.au/2024/09/04/fashion-is-giving-me-joy/) - Another thing that’s giving me joy lately is fashion. This is what I wore on Saturday - a purple denim-y boilersuit (it’s OneTeaspoon), chunky boots, a purple and orange beanie and mermaid brooch - with warm layers underneath. I threw on a colourful check coat over the top, which has some purple squares in it,
- [Thank you](https://carlyfindlay.com.au/2024/09/03/thank-you-2/) - Sending a huge thank you for the kindness and generosity you’ve shown me and Adam over the last couple of months. Thank you for valuing my work and caring about us enough to assist us in our difficult time, especially during a cost of living crisis. It means so much. The donations to PayPal have
- [Double hatting to keep warm and protect sensitive skin](https://carlyfindlay.com.au/2024/09/02/double-hatting-to-keep-warm-and-protect-sensitive-skin/) - People with cold, bald and sensitive skin heads: I got you! This isn’t a sponsored or gifted post - I bought the beanies myself. Here’s me double hatting - a crochet beanie hiding a merino one, and a felted floral hat hiding a jersey one. So cosy and protective. I’ve been layering two hats while
- [An unintentional weight loss photo collage that indicates a symptom of ovarian cancer](https://carlyfindlay.com.au/2024/08/31/an-unintentional-weight-loss-photo-collage-that-shows-ovarian-cancer/) - CW: weight talk, shape, size, BMI, weight loss, surgery, cancer This isn’t an intentional weight loss photo collage. This shows how much weight I’ve lost, and how my shape has changed, because of ovarian cancer. The left pic is from April 2021, the right is from today. It’s the same Oneteaspoon jumpsuitt, in size medium.
- [Art has brought me joy](https://carlyfindlay.com.au/2024/09/01/art-has-brought-me-joy/) - A friend asked me what’s bringing me joy right now. I took a while to answer - because honestly, I don’t feel myself. My world has shrunk a lot, while I rest and recover and try not to go out as much. I feel I’ve lost my sense of purpose and connections. What did I
- [Happy Father’s Day to my Dad](https://carlyfindlay.com.au/2024/09/01/happy-fathers-day-to-my-dad/) - My Dad, Roger, and I don’t have too many selfies. This one is from 2021, and I love how relaxed we both are. Relaxing doesn’t come easy to either of us. It’s my Dad who tries to carries the worrying load for me. He’s always said “you’ll always be my baby, even when you’re forty”.
- [Second round of chemo done - surrounded by friends](https://carlyfindlay.com.au/2024/08/31/second-round-of-chemo-done/) - I had my second round of chemo yesterday - a changed dose, and a week extra break between doses. They have removed one drug entirely. I’m still nervous, but hopeful. Earlier this month, I wrote that I had a very severe reaction to the first round of chemo - my skin in particular. My skin
- [Three months since it all changed](https://carlyfindlay.com.au/2024/08/25/three-months-since-it-all-changed/) - Today (25 August) is three months since Jeanette Findlay and I flew home from a seven week trip to South Africa and France. We talk about the great times we had and the wonderful people we met daily, and how lucky we travelled before I knew that I had a cancerous tumour. The trip was
- [Joining the Babes with Mobility Aids club](https://carlyfindlay.com.au/2024/08/18/joining-the-babes-with-mobility-aid-club/) - I am now a babe with a mobility aid! My disability is dynamic - that is, my functionality can change depending on the severity of my Ichthyosis and also physical and attitudinal barriers I face. My body’s reaction to the chemotherapy has meant it’s been hard for me to stand, walk and wear shoes; and
- [Breathing through the pain](https://carlyfindlay.com.au/2024/08/15/breathing-through-the-pain/) - I wouldn’t have predicted that losing my hair would be the brightest part of my week. But here we are. This has been one of the hardest weeks of my life - I’ve experienced unprecedented pain levels in my skin. It was a reaction to the chemotherapy. My hands and feet have been impacted the
- [The worst pain](https://carlyfindlay.com.au/2024/08/10/the-worst-pain/) - I hate that my social media has become a cancer diary, and that cancer is all I think about, talk about and feel right now. When I write about Ichthyosis, I am very deliberate to share the social barriers encountered, like discrimination, bullying, exclusion and violence; and I advocate for equal rights, accessibility, representation and
- [How am I - ahead of chemotherapy?](https://carlyfindlay.com.au/2024/07/27/how-am-i/) - How am I? Here’s how I feel right now. Even though I’ve got a lifelong chronic illness, this feels different. My whole life seems consumed with recovering from surgery and this new diagnosis of cancer. It seems to be all I think and talk about, but I’m tiring to work and spend time with friends
- [Pre-emptive haircut](https://carlyfindlay.com.au/2024/08/03/pre-emptive-haircut/) - I got a haircut - it’s very short! I’ve written a lot about how hard it’s been to grow my hair, because one trait of the Ichthyosis I have (Netherton’s Syndrome) is brittle hair. As a child and young adult especially, it was very slow to grow, and broke off at the scalp. I had
- [Day one chemotherapy thoughts - Thursday 1 August 2024:](https://carlyfindlay.com.au/2024/08/03/day-one-chemotherapy-thoughts-thursday-1-august-2024/) - Day one chemotherapy thoughts - Thursday 1 August 2024: I’d been wanting to get a recliner chair for a while. I can sit on many at the hospital instead. I wore things that people I love made or gave to me, so I had them with me today. A bracelet made by a child, brooches
- [#HospitalGlam](https://carlyfindlay.com.au/2024/08/03/hospitalglam/) - #HospitalGlam is a social media self advocacy movement started by Karolyn Gehrig (@karolynprg). From an article about HospitalGlam in HuffPost in 2015: “Gehrig’s images show what her day-to-day life of chronic illness is like, conveying strength in the face of her treatments.“I began using some conventions of fashion photography to strip away ambiguity about my
- [Thankful for my team](https://carlyfindlay.com.au/2024/08/03/thankful-for-my-team/) - Thank you to my Mum, Danielle and Sandy for supporting me today - you’re excellent hand holders, gift givers and pork crackling suppliers. And thank you to everyone who’s rallied for me in so many ways. My friends, parents, Adam, workplaces, social media communities and medical team - I love you, and you’ve made me
- [The care I get as a cancer patient vs the care the Australian Government gives disabled people](https://carlyfindlay.com.au/2024/08/03/the-care-i-get-as-a-cancer-patient-vs-the-care-the-australian-government-gives-disabled-people/) - The care I get as a cancer patient, compared to the care this government gives me and 5 million other disabled people is poles apart. As a cancer patient, I’m believed, respected, cared for, get access to multiple supports, treated holistically, and my needs are met above and beyond what I ever imagined. My disability
- [Day one chemo thoughts](https://carlyfindlay.com.au/2024/08/01/day-one-chemo-thoughts/) - Day one chemotherapy thoughts: I’d been wanting to get a recliner chair for a while. I can sit on many at the hospital instead. I wore things that people I love made or gave to me, so I had them with me today. A bracelet made by a child, brooches made or given to me
- [When I write it down, it makes sense why I am feeling overwhelmed.](https://carlyfindlay.com.au/2024/07/15/when-i-write-it-down-it-makes-sense-why-i-am-feeling-overwhelmed/) - I just sent this text to a friend who asked how I am. No wonder I’m feeling overwhelmed right now. Shoutout to everyone else with a lot on their plate right now. It is too much all at once. I had a productive doctor’s appointment today, and now have a path forward; and I have
- [Brain fog](https://carlyfindlay.com.au/2024/07/17/brain-fog/) - One symptom I’ve had lately - and I think it’s a combo of recovering from surgery/anaesthetic, learning I have cancer, menopause and just because I have a lot on my mind - is brain fog. I’m forgetting words, not as quick to interpret things, and slower on completing tasks. It’s really hard as a writer
- [An update about my health](https://carlyfindlay.com.au/2024/06/19/an-update-about-my-health/) - I am not so well right now, and soon I am going to hospital to have surgery. On the day I arrived back in Australia after my travels to South Africa and France, I went straight to hospital with severe stomach pain and swelling. Tests showed that I have a large ovarian cyst, also known
- [Cancer, hysterectomy and early menopause - the whole shebang](https://carlyfindlay.com.au/2024/07/03/cancer-hysterectomy-and-early-menopause-the-whole-shebang/) - I have cancer. I also had a hysterectomy. And I’ll come into early menopause. The whole shebang. Three things that I never saw coming. But here we are. The surgery went well and I seem to be recovering ok, but this is the first time I’ve had this type of surgery so I don’t know
- [How am I feeling ahead of my hysterectomy? It’s complicated.](https://carlyfindlay.com.au/2024/06/25/how-am-i-feeling-ahead-of-my-hysterectomy-its-complicated/) - I’m processing my feelings in the best way I know how - writing it down. I am having a hysterectomy because I have a large growth on my ovary. I have had symptoms which I thought were related to bowel conditions for six months. The ovarian cyst was detected last month, the day I arrived
- [Thanks from me and my c-uterus!](https://carlyfindlay.com.au/2024/06/21/thanks-from-me-and-my-c-uterus/) - Thank you from me and my c-uterus! Since I posted about my health and needing a hysterectomy on Wednesday night, I’ve felt so loved. The comments and messages and offers of help have been heartwarming. I feel very supported, and less anxious about impending surgery. I was hesitant about how much to share, but what
- [Face Equality Week 101](https://carlyfindlay.com.au/2024/05/15/face-equality-week-101/) - It’s Face Equality Week. This year’s theme is My Face is a Masterpiece. Here is an explainer about Face Equality Week. What does facial difference include? Facial difference can be the result of birthmarks, scars, skin conditions, burns and cranio-facial conditions. It can affect people from birth, can be acquired after birth, and can be
- [Face Equality Week - My Face is a Masterpiece](https://carlyfindlay.com.au/2024/05/15/face-equality-week-my-face-is-a-masterpiece/) - It’s Face Equality Week, and this year’s theme is “My Face is a Masterpiece”. (It’s also Ichthyosis Awareness Month - this theme is perfect for that, too!) “Why do we so often see stories about facial difference as a ‘tragedy’, when they should be about triumph? “ - Face Equality International Art is a universal language,
- [I’m off to France to visit the Avène Hydrotherapy Centre! (sponsored post)](https://carlyfindlay.com.au/2024/05/03/im-off-to-france-to-visit-the-avene-hydrotherapy-centre-sponsored-post/) - Sponsored post: I’m so excited to announce that the next leg of my trip will be in France. I’m leaving South Africa tomorrow and will be flying to Paris then to Montpellier. I’ll be staying at Avène‘s Hydrotherapy Centre for Sensitive Skin. I feel very, very lucky. There are a handful of non prescribed products
- [This Ichthyosis Awareness Month, I want pride over cures](https://carlyfindlay.com.au/2024/05/02/this-ichthyosis-awareness-month-i-want-pride-over-cures/) - May is Ichthyosis awareness month. I hope the organisations supporting people with Ichthyosis focus less on going hiking, finding cures and genetic editing, and more on supporting mental health or how to overcome the shame and hatred and yearning to change appearance, or getting a job - when it’s clear that so many people with
- [Super Fans on SBS Insight](https://carlyfindlay.com.au/2024/04/01/super-fans-on-sbs-insight/) - Very soon, on SBS, Insight is discussing super fans! It airs at 8.30 pm AEDST. It will also be free to watch on SBS On Demand after it airs on TV. I'm not sure if it's available to watch overseas, sorry. A scheduling change has meant that this episode will not air on 2 April
- [April Fun Day - clattern pashing!](https://carlyfindlay.com.au/2024/04/01/april-fun-day-clattern-pashing/) - It's 1 April - April Fun Day! I hope my previous post with me wearing neutrals made you giggle. I am resuming regular programming, with a very bold clattern pash! I told Adam my "news" this morning and he said "I'm putting my foot down. You're not wearing beige! You've got a wardrobe full of
- [I'm in my neutrals era, and it feels so good!](https://carlyfindlay.com.au/2024/04/01/im-in-my-neutrals-era-and-it-feels-so-good/) - Big news! I'm in my neutrals era, and it feels so good! After years of dopamine dressing, I am toning it down. I've decided to stop wearing colour. Brooches begone! Blending in is the new standing out. Maximalism is actually feels mundane. A guy I used to have a crush on once told me I
- [Questions from young people are the best!](https://carlyfindlay.com.au/2024/03/07/questions-from-young-people-are-the-best/) - I talked at a school this week (and at another one last week). It was around three hours of talking (broken up into two sessions) to Year 9 students, and I was tired afterward. But I feel so uplifted and hopeful. The young people asked amazing questions, some of the questions included: "You wrote that you're
- [Count her in (your budget) this International Women's Day](https://carlyfindlay.com.au/2024/03/04/count-her-in-your-budget-this-international-womens-day/) - It’s that time of year again – International Women’s Day, when organisations ask “inspiring” women to work for free. And it’s yet another instance of me talking about this topic. In the last five days, I have been asked to work for free for two organisations – a university and a fashion brand. They didn’t
- [The Hate Race at the Malthouse Theatre](https://carlyfindlay.com.au/2024/03/02/the-hate-race-at-the-malthouse-theatre/) - This is a gifted post, containing spoilers. I saw The Hate Race at The Malthouse Theatre today. It's an adaptation of Maxine Beneba Clarke's memoir of the same name - exploring her childhood in the Western suburbs of Sydney in the 1980s and 90s. Maxine, played by Zahra Newman, is sassy and smart, yet uneasy
- [Rare Disease Day 2024](https://carlyfindlay.com.au/2024/02/29/rare-disease-day-2024/) - Today is Rare Disease Day - raising awareness and generating change for the 300 million people worldwide living with a rare disease. When parents get their child's diagnosis for a rare disease, doctors often say, "I'm so sorry". They apologise for life not turning out as planned. They unwittingly instil fear and shame. And adults
- [Valentine's Day dinner at NEL Restaurant in Sydney](https://carlyfindlay.com.au/2024/02/28/valentines-day-dinner-at-nel-restaurant-in-sydney/) - Come with me to NEL. A couple of weeks ago, on Valentine's Day, I took myself out on a date while I was in Sydney for work. In 2022 I got to meet and work with the wonderful Nelly Robinson, head chef and owner of NEL. We filmed four episodes of The Cook Up for
- [Face Equality is a social justice issue](https://carlyfindlay.com.au/2024/02/20/face-equality-is-a-social-justice-issue/) - It’s World Day of Social Justice – a United Nations sanctioned day that reminds us each year of the need to build fairer, more equitable societies. For me, social justice, when applied to Face Equality, means that people with facial differences are respected and valued and feel safe in society. It means that we can
- [I'm a disabled writer. Of course I procrastinate!](https://carlyfindlay.com.au/2024/02/10/im-a-disabled-writer-of-course-i-procrastinate/) - I'm a disabled writer. Of course I'm going to get involved in this trend, because I'm also a procrastinator! 📚✍🏽🎧 Video: Carly, a woman with a red face and short dark curly hair, talking to the camera in two different settings - under a tree and at a cafe, alternating through the video. When under
- [Stop asking marginalised people to work for free](https://carlyfindlay.com.au/2024/02/08/stop-asking-marginalised-people-to-work-for-free/) - Exposure doesn't pay the bills! Stop asking writers to write for free. Stop asking speakers to speak for free. Stop running unpaid advisory and consultation committees. Stop asking marginalised people to share our lived experience and expertise for free. Value us. Especially when you're paying everyone else but us. It's not just an article or
- [Ichthyosis and digestion issues](https://carlyfindlay.com.au/2024/02/08/ichthyosis-and-digestion-issues/) - Let's talk Ichthyosis and digestion issues! This fortnight has been a doozy (or should I say a poozy?!). Something I don't talk about much is that the type of Ichthyosis I have (Netherton's Syndrome) is linked to digestion issues. Many people with Ichthyosis have food allergies - sometimes multiple. I'm lucky that I don't -
- [I was targeted by scammers - via podcast guest invitations](https://carlyfindlay.com.au/2024/02/03/i-almost-got-scammed-via-podcast-guest-invitations/) - There's a Facebook hacking scam going around where scammers impersonate podcaster/celebrity managers, inviting content creators with large Facebook page followings onto a podcast, which they ask to do via Facebook live paid events. During the podcast briefing, the scammer tries to take control of the creator's Facebook page through the back end of Meta. I
- [I've signed to SilverFox Management!](https://carlyfindlay.com.au/2024/01/16/ive-signed-to-silverfox-management/) - Some news! I've signed to SilverFox Management as one of their Icons. SilverFox Management will represent me for brand ambassador and model work. If you're a brand and want to work with me, contact me though SilverFox Management. I really hope for some more collabs with clothing brands - as I love fashion so much.
- [Getting into advocacy - do the thing you love!](https://carlyfindlay.com.au/2024/01/09/getting-into-advocacy-do-the-thing-you-love/) - A friend asked me to write about success and how to move into disability advocacy and/or a career that makes you happy. I wrote this, and thought it would be useful to share here. I am a writer and speaker, trainer, arts worker and activist. I started by having a side hustle - writing a
- [It's ok if all you did this year is survive.](https://carlyfindlay.com.au/2023/12/31/its-ok-if-all-you-did-this-year-is-survive/) - I've just posted my highlights of 2023, and I'm very aware of my privilege. For many people, their 2023 was a really difficult year. It's ok if all you did this year is survive. It's ok if your highlight reel comprised of seeing a beautiful sunset and enjoying a cup of tea, rather than grand
- [Highlights of 2023](https://carlyfindlay.com.au/2023/12/31/highlights-of-2023/) - This year has been huge! Mostly great, but of course, there have been some hard times, too. Thank you to everyone who has been a part of making the year amazing - there were many pinch me moments Here are some of my highlights of 2023: Fun with Adam (he's smiling!). Seeing Darren Hayes play
- [Thoughts on being featured on Getty Images](https://carlyfindlay.com.au/2023/12/30/thoughts-on-being-featured-on-getty-images/) - 2023 was the year i started to get featured on Getty Images. I don't write this out of vanity, I write this because I believe it's important that disabled people are featured everywhere - in ordinary and extraordinary ways, where we are in control of our stories. No inspiration porn, limited medical details and settings, and
- [2023 fashion roundup](https://carlyfindlay.com.au/2023/12/29/2023-fashion-roundup/) - This year I've had such fun with fashion! I've played with layers, reached for clothes I hadn't worn for a while, created three costumes, entered my power suit era, matched my accessories to what I'm doing, had things professionally tailored, and dressed up more fancy. It was hard narrowing these down to 10 photos, so
- [2023 reading roundup](https://carlyfindlay.com.au/2023/12/29/2023-reading-roundup/) - I haven't kept count of the number of books I've read (or bought) this year - I suspect it's over 50. Here were my faves - I read them all as audiobooks. Home by Penny Parkes. A story of running from a settled life, after a childhood of foster care. It was one of the
- [Allies, where were you on International Day of People with Disability?](https://carlyfindlay.com.au/2023/12/12/allies-where-were-you-on-international-day-of-people-with-disability/) - International Day of People with Disability was on 3 December. But it was the quietest Disability Day I’ve ever seen, since I’ve been an activist, It’s been a topic of discussion between me and other disabled friends for the last week or so. Where were the brands? Where were the businesses? (Especially those businesses who've had
- [Being joyous in my Bonds (gifted post)](https://carlyfindlay.com.au/2023/12/03/being-joyous-in-my-bonds-gifted-post/) - Gifted post: It's Disability Day! Something I've been trying to do more of is show more of my body publicly. Not just because it's hot (😘) but to shift away from medicalised photography, and to be more visible. You always see my face, but I cover up my body due to temperature regulation difficulty and
- [Big Visions books by Vision Australia - Craig Shanahan and Nikki Hind](https://carlyfindlay.com.au/2023/12/03/big-visions-books-by-vision-australia-craig-shanahan-and-nikki-hind/) - It's Disability Day! I always get asked about books on disability for kids! So here are a couple. These books are so cool - two of the Big Visions books created by Vision Australia. Big Visions books are biographies about people who are Blind or have low vision, and are written for children. The print
- [Making accessible social media content](https://carlyfindlay.com.au/2023/12/03/making-accessible-social-media-content/) - How to make your social media content more accessible Fifteen percent of the world's population is Disabled - probably more considering many Disabled people don't disclose or aren't diagnosed. So your social media followers will comprise Disabled people! Please make your content accessible - it brings more views, and is a great business decision. Accessible
- [Disability led + centred journals you should read!](https://carlyfindlay.com.au/2023/12/03/disability-led-centred-journals-you-should-read/) - It's Disability Day! Here are four disability led/centred journals you should read (and submit to)! There is such talent among Disabled, Deaf, Chronically ill and Neurodivergent people. Rally Magazine Rally Magazine: co-founded by Baya Ou Xang and Ange Iaria, Rally is a "new multimedia magazine bridging the gap between storytelling and activism. [Their] goal is
- [Nine books by Disabled writers](https://carlyfindlay.com.au/2023/12/03/nine-books-by-disabled-writers/) - It's Disability Day! Here is my annual book stack to celebrate Disabled writers! This stack features memoir, middle grade fiction, a handbook and graphic novels. Go find these at your bookstore or library. Some are available in multiple accessible formats - paperback/hardcover, ebook and audio. Most of the authors are tagged on Instagram, too -
- [What it means when you say, "I don't see you as disabled"](https://carlyfindlay.com.au/2023/12/03/what-it-means-when-you-say-i-dont-see-you-as-disabled/) - I wrote and filmed this for Disability Day 2023. Saying "I don't see you as disabled, you're just Carly to me" is not the compliment you think it is. I also meant to add, you don't see my access needs. I'm Carly Findlay and I'm a proud disabled woman. I know you mean well. But
- [Some thoughts ahead of Disability Day](https://carlyfindlay.com.au/2023/11/30/some-thoughts-ahead-of-disability-day/) - I'm dreading Disability Day solely because I know allies won't step up. All those organisations , media outlets and brands who celebrate pride and other diversity groups will remain silent on 3 December. It is not enough for allies - especially organisations - to share a photo and a quote from a disabled person on
- [Allyship and friendship - part two](https://carlyfindlay.com.au/2023/08/28/allyship-and-friendship-part-two/) - I wrote this in April. Read part one here. I've been thinking about how much of the work I do relates to access in employment and the arts. But what about access in friendships and other relationships? It's just as important. And why isn't it fought for - and honoured - like in the aforementioned
- [Peppermint Magazine feature - Disabled Icons](https://carlyfindlay.com.au/2023/11/27/peppermint-magazine-feature-disabled-icons/) - I'm so excited to show you the the latest issue of Peppermint Magazine - the sixtieth edition! It's a dream come to have a Disabled Icons feature in a fabulous magazine. At the star of the year I pitched this to Lauren, Peppermint's editor, and we've been working on it for months. I profiled seven
- [A note on jealousy](https://carlyfindlay.com.au/2023/11/20/a-note-on-jealousy/) - I wrote this in 2018. Still stands. (Pic was taken then too.) I’ve received enormous support for Say Hello - thank you! It’s been really lovely.But I want to talk jealousy. Someone’s reaction to my announcement that my book has gone to print was “so jealous!” It’s not the first time I have encountered it,
- [I'm a finalist in the National Awards for Disability Leadership!](https://carlyfindlay.com.au/2023/11/15/im-a-finalist-in-the-national-awards-for-disability-leadership/) - On Monday morning I was happily surprised to get an email telling me that I am a finalist in the National Awards for Disability Leadership, in the social impact category. These awards are run by the Disability Leadership Institute. I work with so many incredible disabled people, organisations and allies, and I have the best
- [I've been nominated in the Marie Claire Women of the Year Awards!](https://carlyfindlay.com.au/2023/11/14/ive-been-nominated-in-the-marie-claire-women-of-the-year-awards/) - This is an absolute pinch me moment. I'm a nominee in the Marie Claire Women of the Year awards. The category is changemakers. What an honour. To be recognised by such a notable media outlet is a huge privilege, one I don't take lightly. To have my testimony at the Disability Royal Commission noted by
- [I'm featured in the Not Here To Make You Comfortable book!](https://carlyfindlay.com.au/2023/11/10/im-featured-in-the-not-here-to-make-you-comfortable-book/) - I'm excited to be featured in Penguin's Not Here to Make You Comfortable - 50 women who stand up, speak out, inspire change. I'm featured alongside superstars Michelle Obama; Taylor Swift; Greta Thunberg; Ash Barrty, Hannah Gadsby and Malala (and more); and also among powerhouse friends and colleagues - Turia Pitt, Grace Tame, Clementine
- [Sarah Firth's book launch - Everything Eventually Connects](https://carlyfindlay.com.au/2023/11/09/sarah-firths-book-launch-everything-eventually-connects/) - I attended Sarah Firth's book launch last month. Sarah is a Neurodivergent writer and graphic recorder, based in Naarm/Melbourne. Her book, Everything Eventually Connects, is a graphic novel. From the Allen and Unwin website: "A delicious mix of daily life, science, philosophy, pop culture, daydreams and irreverent humour, Eventually Everything Connects is a work of
- [When someone who loves you captures your beauty](https://carlyfindlay.com.au/2023/11/07/when-someone-who-loves-you-captures-your-beauty/) - Putting this on the blog - because I have a theory that people you love and who love you back capture the best of you in photos. My friend Linda took this photo of me on Sunday night - and I think I look happy, relaxed and dare I say it, beautiful. (Cue sniggers and
- [Ugh! As if! No scary face for Halloween - dressing up as Cher in Clueless](https://carlyfindlay.com.au/2023/10/31/ugh-as-if-no-scary-face-for-halloween-dressing-up-as-cher-in-clueless/) - I'm really getting into this Halloween caper! Two costumes this year - all for a good cause. Scary-face for Halloween? "Ugh! As if!" Went to a Halloween themed skate on the weekend - thrilled to finally dress like Cher in Clueless. It's my favourite movie, and of course, I love the fashion and soundtrack. I've
- [How to create a medical emergency details document](https://carlyfindlay.com.au/2023/11/06/how-to-create-a-medical-emergency-details-document/) - A few years ago, after the dentist mistreatment, I developed a document called "what to do in an emergency" - that me or Adam could give to healthcare workers when I can't advocate for myself. I also sent it to my manager at work. I referred to it in July, when I was coughing and
- [Facial difference is not your Halloween costume](https://carlyfindlay.com.au/2023/10/28/facial-difference-is-not-your-halloween-costume/) - Facial difference is not your Halloween costume. I dressed up as Taylor Swift in her Midnights Era tour outfit to talk about face equality at Halloween. This was a lot of fun to make - I hope it's useful and makes you smile, too. Check out Face Equality International and Changing Faces for great resources around Halloween and facial
- [You really don't need to know.](https://carlyfindlay.com.au/2023/10/30/you-really-dont-need-to-know/) - Every time a stranger asks me "what happened?" to my face (like the woman at the hospital cafe serving me a salad this morning), I want to quote them Stella Young: "It doesn't matter how we got like this. Really. If you're just sitting next to one of us on the train, or taking our
- [Repurposing a tea towel into wearable art](https://carlyfindlay.com.au/2023/10/24/repurposing-a-tea-towel-into-wearable-art/) - A couple of months ago I posted on my Instagram about me commissioning a bag maker to repurpose a tea towel. Bec & Milly made my Cath Kidston Care Bears tea towel into a handbag - as I didn't want the tea towel to be hidden in a drawer. Here it is! When I picked
- [Meeting Trinny Woodall on her Fearless book tour](https://carlyfindlay.com.au/2023/10/25/meeting-trinny-woodall-on-her-fearless-book-tour/) - Oh my goodness! Last night I met a woman I've admired for a very long time - Trinny Woodall. When Trinny and Susannah's TV show was on TV in the early 2000s, my grandmother and I bonded over it. We'd watch it, and then play dress ups. To "Trinny and Susannah" was a verb -
- [Meeting Kathleen from Beautiful Little Souls Blog and seeing Emotion 21 perform](https://carlyfindlay.com.au/2023/10/18/meeting-kathleen-from-beautiful-little-souls-blog-and-seeing-emotion-21-perform/) - CW: ableism, low expectation of disability eugenics - but read on, because there's friendship, disability pride, identity and joy. On Saturday night, I met my friend Kathleen - @BeautifulLittleSoulsBlog - for the first time IRL It was a pretty special meeting. She's one of the best parent-allies I know, and she's also disabled. Back in
- [Skin Stories podcast with Olivia Molly Rogers](https://carlyfindlay.com.au/2023/10/22/skin-stories-podcast-with-olivia-molly-rogers/) - A few months ago I was flown to Sydney to do an interview with my friend Olivia Molly Rogers. Olivia has acne, and we have often spoken about the similar well meaning messages we get from strangers, offering us "cures" for our skin conditions. I loved doing this interview - you can listen on your
- [Talking on KICPOD with Laura Henshaw and Steph Claire Smith](https://carlyfindlay.com.au/2023/10/17/talking-on-kicpod-with-laura-henshaw-and-steph-claire-smith/) - A couple of weeks ago I chatted to Steph Claire Smith and Laura Henshaw on KICPOD. The podcast has just dropped! Steph and Laura are incredibly successful and accomplished women and have a huge reach - so it was a real honour to chat with them. They are LOVELY - and had done a lot
- [A Perfectly Melbourne Day - street art featuring my writing!](https://carlyfindlay.com.au/2023/10/16/a-perfectly-melbourne-day-street-art-featuring-my-writing/) - I'm so excited to be a part of the Metro Tunnel Creative Program and Wheeler Centre's Spring Fling - along with five other incredible writers - Alice Pung, Bruce Pascoe, Claire G Coleman, Jennifer Downs and Nevo Zisin, and artwork by Enoki. The theme was "Above and beyond". Images: photos of Carly & writers &
- [Ichthyosis impacts mental health](https://carlyfindlay.com.au/2023/10/10/ichthyosis-impacts-mental-health/) - I wrote this on World Mental Health Day (10 October) in 2020, it's still relevant. CW: Discrimination, ableism, diverse mental health, suicide A 2020 study from the American Academy of Dermatology found: “Many patients with ichthyosis have undetected psychiatric distress. They face harassment, discrimination, and uncomfortable skin symptoms often only relieved by time-consuming treatments.” From
- [Some thoughts on the eve of the Disability Royal Commission findings being made public](https://carlyfindlay.com.au/2023/09/28/some-thoughts-on-the-eve-of-the-disability-royal-commission-findings-being-made-public/) - Content warning: abuse, violence, neglect, murder of disabled people Today the findings were handed down from the Disability Royal Commission to the Governor General, and tomorrow they will be made public. I, like many disabled people I know, are on tenterhooks. It's all I can think about. A Minister says the report will "make for
- [This is why I write](https://carlyfindlay.com.au/2023/09/01/this-is-why-i-write/) - This is why I write. Thank you for this incredible feedback, Melissa. (Melissa made a beautiful Instagram reel featuring her daughter and these words.) I love that Say Hello is still making a difference to so many people. In the chapter about grief and hope, I wrote "It's hard to feel proud when someone is grieving
- [Allyship and friendship - part one](https://carlyfindlay.com.au/2023/08/27/allyship-and-friendship-part-one/) - I wrote this in December 2022. Most of the time I advocate for accessibility for the broader disability community as it relates to other disabled people. Only occasionally do I advocate for accessibility for myself. It is harder to advocate for access for myself, as so often disabled people are seen as difficult, party poopers,
- [This is Gonna be Big film at MIFF](https://carlyfindlay.com.au/2023/08/20/this-is-gonna-be-big-film-at-miff/) - This afternoon I saw This is Gonna be Big at Melbourne International Film Festival. Directed by Thomas Charles Hyland, This is Gonna be Big is the coming of age story of students at Sunbury and Macedon Ranges Specialist School’s Bullengarook campus. The film documents the school performing a John Farnham themed musical - we see
- [Chatting with Chloe Hayden on Boldly Me podcast](https://carlyfindlay.com.au/2023/08/07/chatting-with-chloe-hayden-on-boldly-me-podcast/) - I've been a fan and friend of Chloe Hayden for a long time, and today I am on her podcast - Boldly Me. We chat about ableism, my journey to acceptance and pride, activism exhaustion, identifying as a woman of colour and my experience of being catfished- plus more. This was such a fun chat
- [Grateful 💕](https://carlyfindlay.com.au/2023/08/01/grateful-💕/) - Hey friends! Thanks for your support during July - it was a big month! It was Disability Pride Month; I was involved in some big events; I was quite sick; and I went away to NSW and QLD for work. Your lovely comments, which genuinely show appreciation and excitement for my work and life, means
- [Some love, and reassurance, from me at the end of Disability Pride Month](https://carlyfindlay.com.au/2023/07/31/some-love-and-reassurance-from-me-at-the-end-of-disability-pride-month/) - Dear Disabled friend - here's some love at the end of Disability Pride Month. Save this for yourself, or send it to a Disabled friend who you think might like to hear or read these words 💕 An instagram version of this video is here. Video: Carly, a woman with a red face and short dark
- [When disabled people "play victim" to "boost our profile"](https://carlyfindlay.com.au/2023/07/30/when-disabled-people-play-victim-to-boost-our-profile/) - CW: ableism Happy end of Disability Pride Month! This is said with much sarcasm. I was alerted to these tweets today - they're a part of a vulgar Twitter (or whatever it's called now) thread which targets and demonises a number of high profile disabled people, including me, for playing the victim in order to gain
- [Being proud of my disabled body - Disability Pride Month](https://carlyfindlay.com.au/2023/07/29/being-proud-of-my-disabled-body-disability-pride-month/) - July is Disability Pride Month - a great excuse to share a couple more of these photos from the Melbourne Fashion Festival All Bodies are Beautiful flash mob event held in March. The flash mob was organised by Peta Hooke and Heidi Anderson to show that all bodies should be a part of the 2023
- [Hot pink makes my heart sing!!](https://carlyfindlay.com.au/2023/07/29/hot-pink-makes-my-heart-sing/) - Images: Carly, a woman with a red face, short dark curly hair, wearing a hot pink boilersuit over a floral top, and black boots. In the first photo she's not wearing a jacket. In the second, she's wearing a neon floral puffer jacket. She's standing near a bright green door in both pics, smiling. Lots
- [Disability doesn't mean inability](https://carlyfindlay.com.au/2023/07/29/disability-doesnt-mean-inability/) - Saying "my relative is disabled but they're very smart", or "they're disabled but active", or "my friend is disabled but they're able" is very ableist. Disability doesn't mean inability; and the worth and value of a disabled person shouldn't depend on how smart, capable or active we are. Spread the word! If this post has
- [The invisible parts of my visible disability](https://carlyfindlay.com.au/2023/07/29/the-invisible-parts-of-my-visible-disability/) - Here are some of the invisible aspects of my visible disability. This was inspired by Robyn Lambird, who did a similar video a few weeks ago. (Also, video content takes so long to make - so if you find this useful, please like, share, comment and save!) Video: a woman with a red face, short
- [How getting sick with a respiratory virus exacerbated my skin condition](https://carlyfindlay.com.au/2023/07/29/how-getting-sick-with-a-respiratory-virus-exacerbated-my-skin-condition/) - Recently I did a talk at a school. One of the amazing Year 6 students asked me whether when I get sick with a cold or another condition that isn't my skin condition, does it make my skin condition worse? Such a great question -and very pertinent to what's been happening for me these last
- [Disability Pride Month 2023 - the importance of connecting with others](https://carlyfindlay.com.au/2023/07/02/disability-pride-month-2023-the-importance-of-connecting-with-others/) - July is Disability Pride Month. I'll be writing more about Disability Pride throughout. What does a photo of my omelette have to do with Disability Pride?, you ask. A couple of months ago I was out with friends, and a woman came up to me to tell me she too has Ichthyosis and my book
- [The Dan Daw Show at RISING  Melbourne](https://carlyfindlay.com.au/2023/06/16/the-dan-daw-show-at-rising-melbourne/) - Gifted post: Last night I saw The Dan Daw Show at The Meat Market - it's a show in RISING. It's a dance work, putting a disabled body on show. We see Dan Daw celebrate his body and sexuality through sexy play, subvert power structures, show sexual and disability pride, and shake shame, in partnership
- [A call to disability allies](https://carlyfindlay.com.au/2023/06/11/a-call-to-disability-allies/) - In April I spoke at the Being Seen on Screen conference hosted by ACMI in partnership with the Geena Davis Institute. Here's me calling for better allyship in the arts, because so many fail to include disability in their diversity initiatives. Don't forget about disabled people when you're thinking about and talking about diversity. Big
- [My chat on the Wilosophy podcast](https://carlyfindlay.com.au/2023/06/06/my-chat-on-the-wilosophy-podcast/) - This was a flashback - four years ago I did Wil Anderson's Wilosophy podcast. Wil and I had a great chat about how comedians can do better in reducing ableism, the difficulty of calling things out, the process of writing Say Hello, and my fandom - including Shane Warne. I also talked about my philosophy
- [If you don't know how to pronounce Ichthyosis, please don't offer me unsolicited advice](https://carlyfindlay.com.au/2023/05/30/if-you-dont-know-how-to-pronounce-ichthyosis-please-dont-offer-me-unsolicited-advice/) - You know, there's absolutely no need to offer a stranger unsolicited advice, especially not a "cure", for our disability or chronic illness. Not in public or via email and social media. Never, And yes, I've tried Percy's Powder, goat's milk, mangosteen juice, Chinese herbs, essential oils. retinoids and fish oil (and more). I haven't got
- [My chapter for Oh Matilda, Who Bloody Killed Her? - as part of The Australian's Summer relay story in 2020-21](https://carlyfindlay.com.au/2023/05/22/my-chapter-for-oh-matilda-who-bloody-killed-her-as-part-of-the-australians-summer-relay-story-in-2020-21/) - A few years ago, I was asked to take part in a story relay for The Australian newspaper. It was where each chapter would be written by a different writer - steering the story in all new directions. It was called Oh Matilda, Who Bloody Killed Her?. Here is an article about the project. And
- [I've entered my eccentric grandma era - wearing a velour robe out of the house](https://carlyfindlay.com.au/2023/05/21/ive-entered-my-eccentric-grandma-era-wearing-a-velour-robe-out-of-the-house/) - Images: 1-3. A woman with a red face and short dark curly hair, standing near a white cart with flowers and sparkling wine in a metal bucket and wine glasses on it. She's wearing a long light blue jacket printed with Parisian streets and motifs on it - landmarks, flowers, butterflies etc - over a
- [Ichthyosis Awareness Month: Visibility is possibility](https://carlyfindlay.com.au/2023/05/10/ichthyosis-awareness-month-visibility-is-possibility/) - I wrote this in May 2020. It still stands. It's still Ichthyosis Awareness Month too. I’m 38 years old and I’ve never seen a body that looks like mine advertising lingerie. I’ve never seen a body that’s red, splotchy and scaly, with skin flakes dotting their hair, wearing sexy (or even comfortable) underwear. We are
- [Face equality is feeling fucking fabulous (and how you can be an ally beyond Face Equality Week)](https://carlyfindlay.com.au/2023/05/20/face-equality-is-feeling-fucking-fabulous-and-how-you-can-be-an-ally-beyond-face-equality-week/) - That's a wrap for Face Equality Week! And here's a few more thoughts from me: Face equality is feeling fucking fabulous. Face equality is wearing clothes that make me feel and look good. Fave equality is actively participating in photos, without using filters to change my appearance. There's an assumption that when you have a
- [Face equality is community and connection](https://carlyfindlay.com.au/2023/05/19/face-equality-is-community-and-connection/) - It's Face Equality Week, the theme is "we will not hide". Face equality is being visible for other people with facial differences, skin conditions and disabilities; and being available for them and their families and friends. I know it's not my job to be a teaching moment all the time. But I do believe that
- [Face Equality Week - graphics by Elizabeth Russo](https://carlyfindlay.com.au/2023/05/18/face-equality-week-graphics-by-elizabeth-russo/) - I love this little graphic series about Face Equality Week, created by Elizabeth Russo. It's a great resource for allies, and also for people with facial differences who might be looking for community, connection and validation of their experiences. Elizabeth told me: "I like learning about face equality and making this is an easy, fun
- [Face Equality Week: I will not hide, despite the hate speech.](https://carlyfindlay.com.au/2023/05/17/face-equality-week-i-will-not-hide-despite-the-hate-speech/) - Content warning: ableism, hate speech, suicide reference It's Face Equality Week, led by Face Equality International. The theme is "we will not hide". This video lists some of the many ableism things that people have said or written to or about me. And I know countless people with facial differences, skin conditions and disabilities who've
- [Face Equality Week: incidental representation on The Cook Up with Adam Liaw on SBS Food](https://carlyfindlay.com.au/2023/05/16/face-equality-week-incidental-representation-on-the-cook-up-with-adam-liaw-on-sbs-food/) - This week is Face Equality Week, led by Face Equality International. The theme is "We Will Not Hide". (It is also Ichthyosis Awareness Month!) Something I talk about a lot is the need for authentic representation in media. I wholeheartedly encourage news outlets to employ people people with facial differences to write articles and speak on
- [Face Equality Week - letting my redness shine](https://carlyfindlay.com.au/2023/05/15/face-equality-week-letting-my-redness-shine/) - CW: internalised ableism & body shaming Today marks the start of Face Equality Week. This year's campaign is titled "We Will Not Hide", because visibility for people with facial differences reduces stigma. Hiding can take form in many ways for people with facial differences and akin conditions. It can be not going outside; using filters
- [The time I met Dooce (and what she taught me about handling criticism).](https://carlyfindlay.com.au/2015/08/20/the-time-i-met-dooce-and-what-she-taught-me-about-handling-criticism/) - Last Friday I saw Heather B Armstrong (Dooce) speak at Problogger. She spoke about the criticism she has received over 14 years of blogging. (She started blogging in 2001, "right after I hopped of my dinosaur"). As her session began, a recording played over the AV - her reading out the hate-mail she received. Things
- [Face Equality Week 2023 - We Will Not Hide](https://carlyfindlay.com.au/2023/05/11/face-equality-week-2023-we-will-not-hide/) - I'm an ambassador for Face Equality International. Face Equality International is an alliance of Non-Governmental Organisations (NGOs), charities and support groups which are working at national, regional or international levels to promote the campaign for ‘face equality’. This year's Face Equality Week is 15-19 May; and the theme is Counteracting Stigma with the We Will
- [Book(s) review: This Has Been Absolutely Lovely and How to be Second Best by Jessica Dettmann](https://carlyfindlay.com.au/2023/05/10/books-review-this-has-been-absolutely-lovely-and-how-to-be-second-best-by-jessica-dettmann/) - In the last fortnight I've devoured two of Jessica Dettmann's books, after seeing a post by my agent and friend Danielle Binks, singing Jessica's praises. The first book I read was "This Has Been Absolutely Lovely" - about the Jones family coming together after the death of the patriarch, and uncovering and unraveling some hidden
- [Ichthyosis Awareness Month - on community and dignity](https://carlyfindlay.com.au/2023/05/08/ichthyosis-awareness-month-on-community-and-dignity/) - It’s Ichthyosis Awareness Month. I’ve written a little about how I really want to focus on community and dignity. Here are some ways to raise awareness while maintaining your dignity: 💜 Take up space - and don’t apologise for it. For me this has meant not fearing leaving my skin or ointment behind. 💜 Demand
- [It takes a village of allies to support a person with Ichthyosis - a new meme and some links to Ichthyosis resources](https://carlyfindlay.com.au/2023/05/03/it-takes-a-village-of-allies-to-support-a-person-with-ichthyosis-a-new-meme-and-some-links-to-ichthyosis-resources/) - I have never understood this green meme that pops up every Ichthyosis Awareness Month. It seems aggressive and unhelpful. Maybe it could be reworded to: "Until I had a child with Ichthyosis,I didn't know anything about this rare, severe skin condition. I wish more people knew. Now I do know there are many Ichthyosis support
- [Doing activism my way](https://carlyfindlay.com.au/2023/05/01/doing-activism-my-way/) - I wrote this for (the now defunct) Feminist Writers Festival blog, back in 2018, as I was writing my memoir, Say Hello. I was incredibly scared to publish this piece even, with words mulling in my head for months, after I lost a lot of friends in one go, one reason was that I wasn't
- [Book review: The One and Only Dolly Jamieson by Lisa Ireland](https://carlyfindlay.com.au/2023/04/29/book-review-the-one-and-only-dolly-jamieson-by-lisa-ireland/) - My friends and I have a monthly book club, and this month I chose the book. I chose The One and Only Dolly Jamieson by Lisa Ireland, after hearing some of my writer friends and colleagues talking about it at brunch earlier this year. Today my friends and I came together to discuss the book,
- [My chat on Lissie Turner Presents Podcast](https://carlyfindlay.com.au/2023/04/28/my-chat-on-lissie-turner-presents-podcast/) - It's been a while since I was a podcast guest. I was invited on Lissie Turner Presents recently, and it was such a great experience. You might know Lissie as Mel Bampton from Triple J. Lissie was such a curious, warm and safe podcast host - she enabled me to talk about some deep stuff.
- [Book launch for You'll Be A Wonderful Parent by Jasper Peach](https://carlyfindlay.com.au/2023/04/16/book-launch-for-youll-be-a-wonderful-parent-by-jasper-peach/) - Today I went to the launch of Jasper Peach's book, You'll Be A Wonderful Parent - Advice and encouragement for rainbow families of all kinds. It was brilliant. Image: a book called "You'll be a wonderful parent - advice and encouragement for rainbow families of all kinds" - by Jasper Peach. It's yellow with a
- [Being Seen on Screen talk at ACMI (and meeting Geena Davis!!)](https://carlyfindlay.com.au/2023/04/09/bodies-on-screen-talk-at-acmi-and-meeting-geena-davis/) - I get to do some cool things and meet amazing people in my work! On Wednesday I was lucky to speak at the Being Seen on Screen conference hosted by ACMI. The panel I spoke on was called Bodies On Screen - and I facilitated a conversation between me, Taryn Brumfitt (2023 Australian of the
- [How to talk to kids about people with facial differences and disabilities](https://carlyfindlay.com.au/2023/03/17/how-to-talk-to-kids-about-people-with-facial-differences-and-disabilities/) - Today I had a wonderful experience in the post office, very soon after I gave a talk where I received the question "what can parents do to help educate their kids about people who look different?" Here's what happened while I was addressing a parcel. A young child near to me asked his mum what's
- [HireUp article - Who has the right to talk about the issues facing people with disability?](https://carlyfindlay.com.au/2023/03/16/hireup-article-who-has-the-right-to-talk-about-the-issues-facing-people-with-disability/) - I co-wrote an article for HireUp, with Lisa Grech, who is a disabled mother of a disabled child. The article is a letter exchange, debating who should be centred in articles about disability issues. It was an interesting way to make a Twitter debate to more nuanced and respectful. I stand by my beliefs that
- [On micro-aggressions - being seated facing the wall](https://carlyfindlay.com.au/2023/02/09/on-micro-aggressions-being-seated-facing-the-wall/) - Micro-aggressions look like this when you have a facial difference: Being seated at the back of a restaurant, facing the wall, so you don't scare other diners. (I sat facing the diners in defiance.) We deserve to be seen, we deserve not to be hidden away. In more inclusive news, two people stopped me to
- [Darren Hayes live at Sidney Myer Music Bowl, Melbourne - 4 February 2023](https://carlyfindlay.com.au/2023/02/07/darren-hayes-live-at-sidney-myer-music-bowl-melbourne-4-february-2023/) - My most fave thing of Saturday night's Darren Hayes concert? How happy he was to perform. Glorious. Joyous. Generous 🌈 Images: six photos of Darren Hayes - a white male singer with brown curly hair - on stage. In the photos he is smiling, singing, standing with his arms above his head. The stage is
- [Doja Cat's Schiaparelli fashion show costume mimics people with facial differences and skin conditions](https://carlyfindlay.com.au/2023/01/24/8404/) - Today, Doja Cat, a singer, attended the Haute Couture Week dressed in red paint, a red dress and 30,000 sequins. From CNN: "The singer's arrival at the Petit Palais in Paris marked a dramatic start to Schiaparelli's Couture Spring-Summer 2023 show, the opening event of the biannual Haute Couture Week in Paris. Dubbed "Inferno Couture," the label's
- [My memoir, Say Hello, turns four!](https://carlyfindlay.com.au/2023/01/24/my-memoir-say-hello-turns-four/) - The other anniversary today is the release of my memoir - Say Hello. It turns four! We had a big event at The Wheeler Centre - a venue that has been central to my writing career. Kevin Mitchell (Bob Evans) hosted it. Over 200 people were there. This event marked the start of a whirlwind
- [Twenty years in Melbourne today!](https://carlyfindlay.com.au/2023/01/24/twenty-years-in-melbourne-today/) - Today marks 20 years since I moved to Melbourne! I came here as a very young 21 year old, wide eyed, ready for a job in the Australian Public Service graduate program. At the time, I had to choose between two jobs - one in Canberra and one in Melbourne. I chose Melbourne as I
- [Meeting Darren Hayes - a little brooch gifting, a lot of fangirling](https://carlyfindlay.com.au/2023/01/19/meeting-darren-hayes-a-little-brooch-gifting-a-lot-of-fangirling/) - Tonight I was in the audience of The Project, especially to see Darren Hayes on the desk. (For those who might not have known me for long, I'm a Darren Hayes super fan - he was the singer of Savage Garden and now has a solo career. He's touring soon. I've been a fan since
- [Talking with Imani Barbarin for Alter State](https://carlyfindlay.com.au/2023/01/16/talking-with-imani-barbarin-for-alter-state/) - In October 2022, I had the pleasure of chatting to Imani Barbarin, a Black American Disabled woman, about disability activism and art. I have been online friends with Imanin for many years - she is regarded as Hashtag Queen. We talked about disability activism and art, and what it's like to occupy the world (specifically
- [Fiona Patten mentions Face Equality in Victorian Parliament - May 2022](https://carlyfindlay.com.au/2023/01/16/fiona-patten-mentions-face-equality-in-victorian-parliament-may-2022/) - In May 2022, at the start of Face Equality Week, I happened to see Fiona Patten MP at a work function. (Fiona has recently finished working as an MP.) She mentioned to Melbourne Fringe’s CEO, Simon, that she and I had collaborated a few years ago when she introduced the Vilification Bill into Victorian Parliament
- [Disability joy - rollerskating with Rodney Bell](https://carlyfindlay.com.au/2023/01/16/disability-joy-rollerskating-with-rodney-bell/) - I experienced pure joy on Saturday 8 October! Rodney Bell - Māori and Disabled dancer - came skating with me. He choreographed a short dance - I managed it, even with how little rhythm and coordination I have. It was so fun! Still can't stop smiling when I think of this, and watch the videos back.
- [A good hairdresser experience](https://carlyfindlay.com.au/2023/01/12/a-good-hairdresser-experience/) - I had a haircut yesterday. The hairdresser kept saying how much she loves my curls. She treated me with kindness and care, and I felt valued. My hair feels and looks good. I have found two regular salons to go to - such a relief after years of discrimination by hairdressers. One way I measure
- [July is Disability Pride Month](https://carlyfindlay.com.au/2022/07/02/july-is-disability-pride-month/) - July is Disability Pride Month. It’s a month to celebrate our disabled identity, our disabled community and our disabled culture. Reaching a sense of pride as a disabled person takes work - every damn day. I didn’t always have disability pride. I didn’t even have disability as part of my identity, even though I’ve had
- [Accessibility provisions for people with skin conditions ](https://carlyfindlay.com.au/2022/05/29/accessibility-provisions-for-people-with-skin-conditions/) - I had a friend over today - she said, “yours is the first soap I can use at someone else’s house, it doesn’t hurt my hands”. Access Is Love, as Alice Wong says. Skin conditions - especially the severe ones (like Ichthyosis) can be painful, itchy, allergy prone, annoying and can make people self conscious.
- [Stop apologising for your appearance](https://carlyfindlay.com.au/2022/05/27/stop-apologising-for-your-appearance/) - If you don’t have a skin condition or facial difference, please don’t apologise for your appearance. Don’t apologise for having a red face, or for not wearing makeup, or for your greasy hair or dandruff.No, you don’t look shit (as I hear so many people describe themselves). You have beauty privilege. I expect it would
- [When I ask you to see me](https://carlyfindlay.com.au/2022/05/27/when-i-ask-you-to-see-me/) - Some people get confused when I talk about being tired of the stares, comments, questions and discrimination because of my face. They aren’t sure what to do, sometimes even asking “well do you want people to look at or ask about your face or not?”. It implies I can’t have it both ways. That I
- [On difficult responses to my face](https://carlyfindlay.com.au/2022/05/27/on-difficult-responses-to-my-face/) - Once when I was on my way to work I asked for a seat on the train, because I was sore. The man refused, kicking up a fuss. He asked me why I need a seat, I said I was disabled, and I’m off to work. He said because I’m working I must not be
- [Face Equality is a Human Right](https://carlyfindlay.com.au/2022/05/23/face-equality-is-a-human-right/) - It is the end of Face Equality Week - this is an annual initiative by Face Equality International - for which I am an ambassador. The theme is Face Equality is a Human Right - and they want to see this recognised formally so we have avenues for support and recourse.They have released a report
- [Travel tales: what if I hate New York City? The limo, the heat, thetears, more heat. The lobster. The new friends.](https://carlyfindlay.com.au/2012/07/27/travel-tales-what-if-i-hate-new-york-city-the-limo-the-heat-thetears-more-heat-the-lobster-the-new-friends/) - I arrived in New York with a broad smile on my face, excited about the possibilities. But I had a little cry tonight. What if I hate New York City? This post may be a little less positive than what you have come to expect. I can't apologise. We arrived here at 8.00 am to
- [The struggle as a disability activist while writing my memoir](https://carlyfindlay.com.au/2018/04/30/the-struggle-as-a-disability-activist-while-writing-my-memoir/) - I wrote this for the Feminist Writers Festival, on the struggles I'm having writing my own book as a disability activist. It's not just the enormous amount of work that is difficult, but the purity politics. It was a difficult piece to write because this has been a difficult time. Book writing is
- [The Project Disability Day feature](https://carlyfindlay.com.au/2021/12/24/the-project-disability-day-feature/) - Thanks for having me, The Project -so great to see Disability Day as the leading story. Kurt Fearnley and Andy Hensel are both doing such great work, as are millions of other disabled people, leading ordinary and extraordinary lives. The Project’s Harrison and Stu were so great to work with, too. Such a great experience.
- [Reflections on turning 40](https://carlyfindlay.com.au/2021/12/24/reflections-on-turning-40/) - CW: ableism, eugenics - but a happy ending Images: three photos of when I was born - in 1981. One is me close up, a tiny baby with red skim. One is my mum holding me. And one is my dad holding me. I felt reflective earlier in the month - thinking about turning 40.
- [Using social media to educate children about facial differences](https://carlyfindlay.com.au/2021/12/16/using-social-media-to-educate-children-about-facial-differences/) - This morning I endured a difficult situation with children and their parent - it was due to fear of my face. I wrote about it here. And many people relate. One of the things that has made a huge difference to me meeting children is when their parents introduce me to them via social media.
- [Hey disability allies! (#IDPWD21)](https://carlyfindlay.com.au/2021/12/03/hey-disability-allies-idpwd21/) - Hey disability allies! I am so impressed and heartened to see so many allies stepping up this Disability Day. It’s a huge change from previous years. But I’m still going to ask - hey disability allies - where are you at? Are you making your events accessible - holding them in wheelchair accessible venues, providing
- [Dear disabled friend on International Day of People with Disability 2021](https://carlyfindlay.com.au/2021/12/03/dear-disabled-friend-on-international-day-of-people-with-disability-2021/) - Dear disabled friend, Happy Disability Day! Disability is broad. It encompasses physical disability, diverse mental health, sensory impairments like Deafness and blindness, cognitive disability, neurodivergency, chronic illness, and dynamic disability - that is, conditions that change in severity from one day to another. And external barriers, and sometimes our bodies, are disabling. If one or
- [How to be a good ally when a disabled person you’re with receives stares, questions, comments and discrimination](https://carlyfindlay.com.au/2021/10/31/how-to-be-a-good-ally-when-a-disabled-person-youre-with-receives-stares-questions-comments-and-discrimination/) - It’s community question time! ”How do allies respond to the stares, questions, comments and discrimination disabled people receive?” This is a question I get a lot - especially from new friends, as well as new parents of kids of Ichthyosis. It can be quite confronting and upsetting - and it’s hard to know what to
- [Not your Halloween costume](https://carlyfindlay.com.au/2021/10/30/not-your-halloween-costume/) - It’s Halloween tomorrow. Please don’t dress up as people with face differences and skin conditions, or as disabled people, for Halloween. It’s extremely harmful. You might think it’s just a fun form of creative expression, but when people like me are constantly being represented as scary, villainous and evil, it gets really tiring. One of
- [Unapologetic](https://carlyfindlay.com.au/2021/08/30/unapologetic/) - I’ve been thinking a lot about how I’ve been made to feel like I must put non disabled people’s comfort before my own when requesting access from them, and when I’ve spoken up about their ableism (intended or not). I’m going to stop doing that. I’m going to ask and speak up, publicly, loudly and
- [On AllySHIT](https://carlyfindlay.com.au/2021/08/23/on-allyshit/) - Absolutely exhausted and disgusted at the AllySHIT I’ve seen - and been on the receiving end of - today. My photo - along with many others peoples’ - was misused (without my consent) in an inspiration porn video about facial difference. Some of the text above the video mentioned how brave we are for publicly
- [Image descriptions on text based posts](https://carlyfindlay.com.au/2021/08/07/image-descriptions-on-text-based-posts/) - Content creators! That’s all of you reading/watching this post! And I’m especially talking to media and brands here. I can’t read your text based images - and nor can many other disabled people. In this video I talk about how Ichthyosis affects my eyes. Text based posts are screen shots from news articles, tweets, notes,
- [On alerting disabled people to disability issues online](https://carlyfindlay.com.au/2021/07/20/on-alerting-disabled-people-to-disability-issues-online/) - You don’t only have to alert the disabled people you know about disability discrimination and accessibility issues. I get SO many notifications a day from well meaning (usually non disabled) people, alerting me to the latest story about discrimination, or asking me to share info and articles to my networks. Don’t just tag me. Tag
- [Stop asking disabled people to work for free (or almost free)](https://carlyfindlay.com.au/2021/07/19/stop-asking-disabled-people-to-work-for-free-or-almost-free/) - Louder for those up the back: Disability organisations (and all other organisations) need to stop asking disabled people to work for little to no money. It devalues us. I got this lucrative offer from a disability support organisation last week - it was initially sent to my speaking agent but she said no, so it
- [My COVID vaccination experience- second dose of Pfizer](https://carlyfindlay.com.au/2021/07/06/my-covid-vaccination-experience-second-dose-of-pfizer/) - Last month I had my second dose the of Pfizer vaccine. I am in the 1B category - with a chronic illness, immunocompromised, and under 40. I wrote about my experience with the first dose here. Before I had my second dose, everyone told me to prepare for the worst, fevers, aching, days off work.
- [The shame of disability residue](https://carlyfindlay.com.au/2021/06/29/the-shame-of-disability-residue/) - 💕 This is my internalised ableism showing. The first pic I’m standing with one leg up and resting behind me, to avoid having blood spots on my stockings in frame. Even though Sunday was great, my friends are the best and my outfit was fucking fabulous. The second photo is an up close photo of
- [Allyship must happen within the disability community, too.](https://carlyfindlay.com.au/2021/06/08/allyship-must-happen-within-the-disability-community-too/) - Ableism hurts more when it comes from other disabled people. Just because *you* didn't find it inaccessible or discriminatory, it doesn't mean others aren't impacted. I have learnt that I must look out of my own disability experience and create access and inclusion for many more in the disability community. I do this every single
- [Book review: Care Work: Dreaming Disability Justice by Leah Lakshmi Piepzna-Samarasinha](https://carlyfindlay.com.au/2021/05/29/book-review-care-work-dreaming-disability-justice-by-leah-lakshmi-piepzna-samarasinha/) - This book contains heavy themes around suicide, suicide ideation, abuse and trauma. Care Work: Dreaming Disability Justice by Leah Lakshmi Piepzna-Samarasinha was Tash and my May #DisabilityReads pick (see my Instagram). Wow. This book. It was a salve. A reassurance that I am not alone. A learning opportunity. I feel punched in the stomach and hugged
- [My Covid vaccination experience - first dose of Pfizer](https://carlyfindlay.com.au/2021/05/27/my-covid-vaccination-experience-first-dose-of-pfizer/) - Disclaimer: am not a doctor or medical professional. Please seek professional medical advice before making a decision about vaccination. I have had my first dose of the Pfizer vaccine against Covid. I’m sharing this experience for anyone who is unsure of the process, especially those who are chronically ill or disabled. The Astra Zeneca vaccine
- [Finding confidence while living with Ichthyosis](https://carlyfindlay.com.au/2021/05/23/finding-confidence-while-living-with-ichthyosis/) - 💜 It’s still Ichthyosis Awareness Month, and I’ve been writing posts to speak to the Ichthyosis community, rather than educate the wider community. I get lots of questions from people with Ichthyosis (and without) about how I am so confident. It’s been a journey. I know that the confidence I have no might seem easy,
- [Face Equality Week 2021](https://carlyfindlay.com.au/2021/05/22/face-equality-week-2021/) - 🖤💛 It’s #FaceEquality Week this week. Face Equality International has been posting lots of useful information for parents who want to talk to their kids about facial difference - including the preferred language to use. Go over to their Website, Facebook page and Instagram to read, save and share posts with your friends and family,
- [Sixteen + books on disability by disabled writers.](https://carlyfindlay.com.au/2018/07/17/sixteen-books-on-disability-by-disabled-writers/) - Here are some books on disability - by disabled writers - that I have bought and you might like. I have not read them all, but I plan to read a few this weekend when I’m in a hotel on enforced rest - bliss! Many are memoir but some are poetry and others are fiction.
- [“You’re very brave.” (I don’t have a choice.)](https://carlyfindlay.com.au/2021/05/14/youre-very-brave-i-dont-have-a-choice/) - CW: ableism, vanity, suicide “Can’t something be done for your face?” “Is there makeup to cover that?” “I have seen green makeup to cover redness - you can buy it at the makeup counter.” “I couldn’t go out of the house looking like that.” “You’re very brave.” “I’d kill myself if I looked like you.”
- [The discrimination hangover](https://carlyfindlay.com.au/2021/05/11/the-discrimination-hangover/) - 💔 I want to talk about the discrimination hangover. Because I am exhausted. On Sunday a taxi driver refused to take me because of my face. I lodged a complaint to the taxi company and taxi regulator. I wrote about it across three social media platforms early on Sunday night and later on Sunday night.
- [Ichthyosis Awareness Month](https://carlyfindlay.com.au/2021/05/03/ichthyosis-awareness-month/) - May is Ichthyosis Awareness Month. Here I am, for your awareness. I have Ichthyosis - the type I have is Netherton’s Syndrome. There are around 25 types of Ichthyosis, ranging in severity, appearance and treatments. Mine is one of the obvious, severe types (itchy, painful and scaly red skin), and the treatment I use (paraffin
- [A little bit of magic](https://carlyfindlay.com.au/2021/04/10/a-little-bit-of-magic/) - The most magical thing happened this afternoon. I saw the beautiful Eliza Hull play at National Gallery of Victoria. So very talented. Eliza did a half an hour set, and in it she played “Don’t Look Away” - the song she wrote about my life for The Canales Project. The song is about me finding
- [New covers for Growing Up Disabled in Australia](https://carlyfindlay.com.au/2021/04/01/new-covers-for-growing-up-disabled-in-australia/) - New cover release! By popular demand, I’ve worked with Black Inc to develop some alternative covers for Growing Up Disabled in Australia. These covers are aimed at the (mostly non disabled) people who just can’t bear to #SayTheWord “disabled”.These new covers will save non disabled from any potential embarrassment or confusion about not seeing
- [Book review - Before I Saw You by Emily Houghton](https://carlyfindlay.com.au/2021/03/29/book-review-before-i-saw-you-by-emily-houghton/) - CW: ableism, trauma, spoilers I have a lot of thoughts about Before I Saw You - the 34th book I’ve read so far this year. Before I Saw You popped up on my Kindle recommendations - and honestly, I should have heeded the alarm bells of the snippets of previous reviews. “A charming page-turner
- [Eliza Hull - Don’t Look Away](https://carlyfindlay.com.au/2021/03/28/eliza-hull-dont-look-away/) - Wow! My dear friend and colleague Eliza Hull wrote a song about me for The Canales Project. It is perfect. I am honoured, and a bit lost for words. Thank you Eliza. Click here to buy the Hear Her Songs album.💜Images: a collage of four photos. from top left: ID 1- Black background with white
- [Leaders are born - but we must dismantle barriers so disabled people can lead](https://carlyfindlay.com.au/2021/03/26/leaders-are-born-but-we-must-dismantle-barriers-so-disabled-people-can-lead/) - This was my contribution to a debate at Castlemaine State Festival on Friday 26 March. The debate topic was “are leaders born, or are they taught?”, and it was between Sally Rugg, Gareth Evans and me (leaders are born) and Christine Nixon , Don Watson and Shelley Ware (leaders are taught). What a fantastic event,
- [To Find Happiness by Josh Pyke](https://carlyfindlay.com.au/2021/03/19/to-find-happiness-by-josh-pyke/) - Hooray! Josh Pyke’s new song ‘To Find Happiness’ is out today! Such a beautiful song, especially as we emerge into the world again. Josh asked me (and many others) to put the song to a little video, to celebrate its release. I’ve had the song for a couple of weeks and have listened to it
- [On anger](https://carlyfindlay.com.au/2021/03/17/on-anger/) - There is a high cost to disabled people for speaking out about ableism. I call it secondary ableism. That is, when a disabled person publicly (or privately) talks about ableism we face, some of the responses are ableist. “Maybe you’re overreacting.” “Maybe they were having a bad day.” “There are two sides to every story.” “Well
- [March 4 Justice - don’t forget disabled women](https://carlyfindlay.com.au/2021/03/15/march-4-justice-dont-forget-disabled-women/) - CW: abuse, violence, discrimination towards disabled women As you matched for justice today, I hope you didn’t forget disabled women, especially disabled women from First Nations and culturally and linguistically diverse communities; intellectually disabled women and transgender women. 1800 Respect states: “Compared to women without disability, women with disability: * Are at greater risk
- [Discrimination on Victoria’s public transport system](https://carlyfindlay.com.au/2021/03/15/discrimination-on-victorias-public-transport-system/) - This is Renay - @fn_feminist on Instagram. She came into Melbourne Friday, from country Vic, to treat her child. They stayed in a hotel, did fun stuff in the city, had dinner with me. Renay is a wheelchair user. She got to the station with an hour to spare on Friday afternoon. As the V-Line
- [8 March 2020 - looking back one year on](https://carlyfindlay.com.au/2021/03/08/8-march-2020-looking-back-one-year-on/) - Looking back on 8 March 2020. I’ve felt a deep sense of longing in the lead up to today - as I reflect back on 8 March 2020 being the last “normal” day I had before Covid-19 changed everything. It was All About Women at the Sydney Opera House. The atmosphere was electric - we
- [International Women’s Day 2021](https://carlyfindlay.com.au/2021/03/08/international-womens-day-2021/) - Today is International Women’s Day. The theme is #ChooseToChallenge. When you attend (or organise) a Women’s Day event (and any event around the year), I want you to ask yourself three questions: Who is in the room? Who can’t get in the room? How will you invite them into the room? I’ve been invited to
- [This latest flare](https://carlyfindlay.com.au/2021/03/07/5803/) - I don’t often show the physical manifestation of ichthyosis. I never want to perpetuate voyeurism or be a pitiful teaching moment. I also feel that showing just a body part in pain harks back to the times I was involved in medical photography - where I was in a cold hospital room in the
- [Book review - Raceless by Georgina Lawton](https://carlyfindlay.com.au/2021/03/06/book-review-raceless-by-georgina-lawton/) - Spoilers ahead Raceless is one of those books that I didn’t want to put down, but I also didn’t want it to end. I was engrossed. A memoir by British woman. Georgina Lawton, Raceless is about the identity crisis of being born Black into a white family. Her mother had an affair with a
- [Say the words](https://carlyfindlay.com.au/2021/02/24/say-the-words/) - I wonder when non disabled people will stop asking disabled people why we use the terms “disabled” and “disability”, and correcting us - like they’re words to be ashamed of. It is not ok to tell marginalised people the words we use for ourselves should be changed. I’m seeing this with Growing Up Disabled in
- [Personal leave](https://carlyfindlay.com.au/2021/02/17/personal-leave/) - Image: Woman with a red face and short dark curly hair tied back, wearing a purple and orange patterned shirt dress. She’s standing at the front of the State Library of Victoria, learning on a pillar, hands clasped, smiling. Photo by Aaron Francis. I had a sick day on Monday. But twenty two years in
- [On Valentine’s Day](https://carlyfindlay.com.au/2021/02/14/on-valentines-day/) - A reminder this Valentine’s Day: Loving your disabled self is a powerful act of defiance and resistance. We’ve been conditioned to feel we are unlovable since the doctor said “I’m sorry” to our parents - or us - as they delivered the diagnosis. Disability is seen as the worst outcome - only, it’s not. Medical
- [Picking my battles](https://carlyfindlay.com.au/2021/02/14/picking-my-battles/) - This photo was taken just after I did The Drum on ABC TV. I was there to talk about my news book, Growing Up Disabled in Australia, on Wednesday night. It’s on ABC iView and The Drum’s Facebook page. Live TV is stressful. (To clarify - The Drum is recorded live, beginning at 5.00 pm,
- [Come from Away the Musical - the return of musical theatre in Melbourne!](https://carlyfindlay.com.au/2021/01/20/come-from-away-the-musical-the-return-of-musical-theatre-in-melbourne/) - #Gifted post Last night I was invited to Come from Away The Musical at Comedy Theatre. Last night’s performance was the first musical to open in Melbourne since March last year. At the start of the performance, the Associate Director and Associate Writer gave a brief speech - saying there were five productions of Come
- [Book review: World of Wonders: In Praise of Fireflies, Whale Sharks, and Other Astonishments  by Aimee Nezhukumatathil](https://carlyfindlay.com.au/2021/01/09/book-review-world-of-wonders-world-of-wonders-in-praise-of-fireflies-whale-sharks-and-other-astonishments-by-aimee-nezhukumatathil/) - Image: a beige book called World of Wonders by Aimee Nezhukumatathil. Around the text are colourful illustrations of flowers, plants and animals. I have just finished the most amazing book. World of Wonders: In Praise of Fireflies, Whale Sharks, and Other Astonishments by Aimee Nezhukumatathil is a stunning nature memoir. It covers Aimee’s life from childhood
- [2020 - what the hell was that?!](https://carlyfindlay.com.au/2020/12/31/2020-what-the-hell-was-that/) - 2020. What the hell was that? It went slow and fast and was a real rollercoaster. I missed so much. We all did. Reflecting on the year that was can be hard - have you achieved everything you set out to? Maybe not. But you got through - you survived a year like no other
- [The Arts Show IDPWD episode](https://carlyfindlay.com.au/2020/12/30/the-arts-show-idpwd-episode/) - I am so excited that I co-hosted The Arts Show on ABC Radio National with my friend, colleague and mentor, Namila Benson, on ABC Radio National on 2 December. We chatted to Eugenie Lee (who makes pain simulation installations); Digby Webster (a multi disciplinary artist whose painting was shortlisted for The 2020 Archibald Prize); and
- [Dr Dinesh Palipana is a doctor of many talents](https://carlyfindlay.com.au/2020/12/30/dr-dinesh-palipana-is-a-doctor-of-many-talents/) - Dr Dinesh Palipana OAM works in the Emergency department of the Gold Coast University Hospital. It’s the busiest emergency department in the country, and Dinesh loves his job. Every single day is different. He could be starting your day with someone who's having a stroke or a heart attack, or treating a kid who's fallen
- [Response to Diving Into Glass by Caro Llewellyn](https://carlyfindlay.com.au/2020/12/28/response-to-diving-into-glass-by-caro-llewellyn/) - Content warning: disability slurs, allusion to violence toward disabled people. The below piece was written and then edited for The Stella Prize website, as part of their response to the 2020 shortlisted books. It was never published there. Caro Llewellyn’s Diving into Glass (Penguin, April 2019) was a daring choice by the Stella Prize judges. The
- [Book review: Beauty - Bri Lee](https://carlyfindlay.com.au/2020/12/26/book-review-beauty-bri-lee/) - Content warning: eating disorder, self harm and fat phobia Disclaimer: I know Bri Lee -I have socialised with her at writers festivals and have worked with her three times - in the capacity of writing for her magazine and speaking on panels with her. I have sat on this review for 10 months, as I
- [How to be a good disability ally](https://carlyfindlay.com.au/2020/05/31/how-to-be-a-good-disability-ally/) - This is a call to action. It has been an horrific month for disabled people - with lots of violence, abuse, segregation and death. But this is not new. We are tired, sad, hurting and angry. And we are scared. Many disabled people are also facing increased questions from allies, asking us what you can
- [It’s still ableism if you have proximity to disabled people](https://carlyfindlay.com.au/2020/12/18/its-still-ableism-if-you-have-proximity-to-disabled-people/) - So many people tell me they work with disabled people, or they’re a parent of a disabled child, or they know a disabled person - and that gives them a free pass to be ableist. They often say “I know a disabled person and they don’t have a problem with the R word”, or justify
- [Spaghetti strap dress](https://carlyfindlay.com.au/2020/12/14/spaghetti-strap-dress/) - If you think you shouldn’t wear something because your face and body doesn’t conform to patriarchal beauty standards - put those thoughts out of your mind. There is always time to start dressing how you’ve always wanted to - in clothing that makes you happy. You deserve to be seen. You deserve to take up
- [A falling out of love letter to Gorman](https://carlyfindlay.com.au/2020/12/05/a-falling-out-of-love-letter-to-gorman/) - I posted this on Instagram today. Dear Gorman clothing, I’ve been a loyal, frequent customer of yours for five years. Your clothes have changed my style - they make me very happy. I wore my favourite print of yours on my book cover. But I’ve fallen out of love. I’ve bought far fewer Gorman items
- [IsoCreate - Deafferent Theatre](https://carlyfindlay.com.au/2020/12/02/isocreate-deafferent-theatre/) - This is a project supported by The City of Melbourne Covid Quick Response Grant. I have interviewed disabled and Deaf artists about how their creative practice has been impacted by Covid-19. This is an interview with Jess Moody and Ilana Gelbert from Deafferent Theatre. Jess (she/her) is Deaf and an Auslan user; and Ilana (she/her)
- [IsoCreate - Jessica Knight](https://carlyfindlay.com.au/2020/12/02/isocreate-jessica-knight/) - This is a project supported by The City of Melbourne Covid Quick Response Grant. I have interviewed disabled and Deaf artists about how their creative practice has been impacted by Covid-19. Jessica Knight (she/her) is a writer and conflicted heathen based in Naarm (Melbourne). Jessica’s response to how she’s made art during Covid is below, as well
- [IsoCreate - Larissa MacFarlane](https://carlyfindlay.com.au/2020/12/02/isocreate-larissa-macfarlane/) - This is a project supported by The City of Melbourne Covid Quick Response Grant. I have interviewed disabled and Deaf artists about how their creative practice has been impacted by Covid-19. Larissa MacFarlane’s is a visual artist, specialising jin lino cuts and paste ups. words are below. Larissa’s pronouns are she/her, and she identifies as
- [IsoCreate - cubbie mako](https://carlyfindlay.com.au/2020/12/02/isocreate-cubbie-mako/) - This is a project supported by The City of Melbourne Covid Quick Response Grant. I have interviewed disabled and Deaf artists about how their creative practice has been impacted by Covid-19. Below are words from cubbie mako - a writer and founding member of Disabled QBIPOC Collective. cubbie’s pronouns are they/them, they are hard of
- [IsoCreate - Jacci Pillar](https://carlyfindlay.com.au/2020/12/02/isocreate-jacci-pillar/) - This is a project supported by The City of Melbourne Covid Quick Response Grant. I have interviewed disabled and Deaf artists about how their creative practice has been impacted by Covid-19. Jacci Pillar is a comedian and satirist. Their pronouns are They/Them. Jacci’s words are below. “I have been doing variety show style comedy and
- [Interview with Beth Bradfield from Malory Towers](https://carlyfindlay.com.au/2020/11/30/interview-with-beth-bradfield-from-malory-towers/) - I am SO proud of this - a little video interview I did with Beth Bradfield from Malory Towers for ABC Life. ❤️ An adaptation of Enid Blyton’s Malory Towers books has been made for TV - filmed in both the UK and Canada. Beth is AMAZING! Lots of people wrote to me to tell
- [Becoming confident with ichthyosis](https://carlyfindlay.com.au/2020/11/19/becoming-confident-with-ichthyosis/) - I get lots of questions about how I am so confident when I have ichthyosis. To be clear, these questions are often from people with skin conditions or facial differences, not people outside of these communities being ableist. The statements some of the people have made about themselves and their appearances breaks my heart. Words
- [Social media and online abuse on Q+A](https://carlyfindlay.com.au/2020/10/20/social-media-and-online-abuse-on-qa/) - Last night I asked a question about cyber hate on Q & A. I was invited to submit a question late last week. The topic was social media. Watch the whole episode here. In the ten or so years I’ve been writing professionally - mostly online, I’ve experienced a lot of online abuse -
- [My concerns with Covid-safe outdoor dining and events in Melbourne](https://carlyfindlay.com.au/2020/10/18/my-concerns-with-covid-safe-outdoor-dining-and-events/) - Today’s announcement of Covid restrictions easing in Victoria has made me a little more hopeful. Can’t wait to see friends and visit shops and eat out. Well done Victorians on making this happen. But I am dreading outdoor dining (and outdoor events in general). My concerns aren’t just for me, but this post is how
- [What's with the image descriptions on my social media posts?](https://carlyfindlay.com.au/2018/05/14/whats-with-the-image-descriptions-on-my-social-media-posts/) - Do you have a social media account? Then this blog post is for you! What's with the image descriptions on my socials? You might have noticed I've recently made a big effort to do image descriptions on my photos on social media. Wait! Are you even following me on social media?! Pause... InstagramFacebookTwitterLinkedIn ...Recommence! I
- [Rollerskating and practicing publicly](https://carlyfindlay.com.au/2020/10/11/rollerskating-and-practicing-publicly/) - I put my rollerskates on for the fourth time today. The first time I put them on was in the house. The second time was at this same park, two Fridays ago. I was too nervous to venture too far from the pole. I think it took me longer to put all my protective gear
- [Say Hello is available in all formats worldwide!](https://carlyfindlay.com.au/2020/10/10/say-hello-is-available-in-all-formats-worldwide/) - I have some very exciting news - my memoir Say Hello is now available in ALL FORMATS WORLDWIDE! I just love how this was made possible. My dear friend Haben Girma, who is a lawyer, writer and activist and also Deaf-blind) wrote to me, asking if the book was available in e-pub format in the
- [The privilege of wearing a mask](https://carlyfindlay.com.au/2020/09/27/the-privilege-of-wearing-a-mask/) - When Covid restrictions start easing, I’m going to struggle getting reacquainted with being frequently stared at and commented on in public - because of my face. I have NOT missed the stares and comments from strangers since I’ve been wearing a mask. I have not missed the curiosity and fear from children. I have not
- [Animation Carly feels fucking fabulous](https://carlyfindlay.com.au/2020/09/24/animation-carly-feels-fucking-fabulous/) - Oh my goodness! This artwork of me by Monique Gabrielle Illustration has made my week! It’s an animation, inspired by my outfits. Monique told me “I had the idea when ther was all the talk about Clueless 25 year anniversary, and how Cher has that cool computer outfit thing & I was thinking how much
- [Growing Up African in Australia review by Reading Women podcast](https://carlyfindlay.com.au/2020/09/22/growing-up-african-in-australia-review-by-reading-women-podcast/) - Well, this is exciting! Jaclyn and Kendra from The Reading Women podcast discussed About Us - the NYT Disability anthology, and also Growing Up African in Australia . They also mention Alice Wong’s Disability Visibility anthology. Their discussion was both kind and critical - talking about who’s included in these anthologies, ams who’s missing. I
- [On the invisible nature of chronic pain in my visible disability](https://carlyfindlay.com.au/2020/09/22/on-the-invisible-nature-of-chronic-pain-for-visibly-disabled-people/) - This is so succinct, but something I haven’t articulated. I have a type of walk - on my toes - to take the pressure off my legs when they’re in pain. I shift uncomfortably when I’m sitting - to relieve the pain. My eyes involuntarily blink, and sometimes I can’t keep the, open - due
- [Strike a pose - the #VogueChallenge](https://carlyfindlay.com.au/2020/09/19/strike-a-pose-the-voguechallenge/) - In June, when I partook in the #VogueChallenge, I brashly asked Vogue Australia to call me. THEY DID! (Via Instagram DM - how very 2020!) Fast forward to August - and my Vogue cover was featured in this beautiful issue, alongside Marley Morgan, Bobbi Lockyer, Shanice Mwath, Toni-Louise Lord, Jame Telfer, Leicolhn McKellar, Sophia Chowdhury,
- [The Astrid Edwards Megamix](https://carlyfindlay.com.au/2020/09/19/the-astrid-edwards-megamix/) - I’ve been collecting interviews with Astrid Edwards - bibliophile and podcasting extraordinaire. She’s an incredible interviewer so I was thrilled when she asked me to be interviewed. Last October I had the privilege of seeing her interview the great Richard Fidler at Ubud Writers and Readers Festival. Amazing! Astrid is a huge supporter of writers,
- [Your discomfort isn’t my burden. Think before you speak.](https://carlyfindlay.com.au/2020/09/07/your-discomfort-isnt-my-burden-think-before-you-speak/) - CW: ableism, suicide. Inspired by @thevaluable500’s and also Caroline Bowditch’s prompt on unconscious bias at Diversity Arts Austealia workshop last week, I’ve had a think about the well meaning things that have been said to and asked of me. And here are 18 of them - and I could list 118 more. Please don’t be
- [How to respond to micro-aggressions](https://carlyfindlay.com.au/2020/09/07/how-to-respond-to-micro-aggressions/) - This morning’s post was about well intended questions and comments that I have been asked - and from the comments, MANY people relate. These questions and comments are called micro-aggressions. Derald W Sue defines micro-aggressions as “The everyday slights, indignities, put downs and insults that people of color, women, LGBT populations or those who are
- [Book review: Hearing Maud by Jessica White](https://carlyfindlay.com.au/2020/08/19/book-review-hearing-maud-by-jessica-white/) - Content warning: ableist language and eating disorder I really enjoyed Hearing Maud by Jessica White. It’s an important work of creative fiction - combining a memoir about Jessica’s life, and an insight into Maud Praed, the deaf daughter of 19th century Queensland expatriate novelist Rosa Praed. Jessica lost her hearing aged four, and as detailed
- [Melbourne Fringe VCR Fest - Art x Access: Is digital art here to stay?](https://carlyfindlay.com.au/2020/08/20/melbourne-fringe-vcr-fest-art-x-access-is-digital-art-here-to-stay/) - On 1 August, I hosted a session at Melbourne Fringe’s VCR Fest - a digital arts festival. It was on art and access. The speakers were AMAZING - Nat’s What I Reckon, Jacci Pillar, Erin Kyan, Laila Thaker and Ricky Buchanan. We talked about digital art - all panelists are digital artists - and how
- [Vale Dr James Partridge OBE](https://carlyfindlay.com.au/2020/08/18/vale-dr-james-partridge-obe/) - Today I read the news that my friend, colleague and mentor, Dr James Partridge OBE died on Sunday. I am very sad and shocked. A world without James is a lesser place, but he leaves behind an enormous legacy. I send all my love to James’ family, friends and colleagues. James was a pioneer in
- [This is when I came out as a person of colour](https://carlyfindlay.com.au/2020/07/22/this-is-when-i-came-out-as-a-person-of-colour/) - I’ve recently been accused of appropriating my disability and race. That I just “came out“ as a person of colour. This is when I came out as a person of colour - born with Ichthyosis. December 1981. I was also shortlisted in The Horne Prize in 2019 for a personal and political story on disability
- [Things they don’t tell you about being a disability activist](https://carlyfindlay.com.au/2020/07/28/things-they-dont-tell-you-about-being-a-disability-activist/) - It’s Disability Pride month right now. To be honest, I’m not feeling it - I am feeling hurt and exhausted. I (and many others) have been the target of bullying within the disability community/sector for some time now. For the most part, the bullying towards me has been covert, but in recent months - since
- [Book review: Nightingale Point by Luan Goldie](https://carlyfindlay.com.au/2020/07/17/book-review-nightingale-point-by-luan-goldie/) - CW: Disability slur I read Nightingale Point by Luan Goldie this week, and I can’t stop thinking of it. Nightingale Point is an incredible book, based on the true story of a plane that hit two public housing towers in Amsterdam, and a tribute to the Grenfell Tower residents in London. The story began in
- [The Babysitters Club on Netflix - the wholesome, joyous content we need right now](https://carlyfindlay.com.au/2020/07/05/the-babysitters-club-on-netflix-the-wholesome-content-we-need-right-now/) - Spoilers ahead But of course, being an appearance activist with a facial difference and skin condition, I was disappointed by a storyline in the last episode. Spoiler ahead... Stacey and her former NYC friend Laine had an argument at Camp Moosehead, and pulled each other into a growth of poison ivy - which caused them
- [Stop using disability slurs](https://carlyfindlay.com.au/2020/06/23/stop-using-disability-slurs/) - CW: allusion to and mention of disability slurs: I did a talk today at Centre for Australian Progress. I talked about accessible communication - which covered how to talk about disability (person first and identity first language), accessible written communication, accessible virtual and physical events, and disability slurs. Disability slurs are words that are associated
- [I am not white. My racial identity.](https://carlyfindlay.com.au/2020/06/13/i-am-not-white-my-racial-identity/) - I am not white. Having Ichthyosis - specifically Netherton’s Syndrome, which causes red skin - means that my mixed race heritage is not apparent to others. My Mum is a coloured South African (the term she uses) and my Dad is a white Englishman. My parents met in South Africa and because of Apartheid, courted illegally
- [Ectropian eyelids and Ichthyosis](https://carlyfindlay.com.au/2020/06/08/ectropian-eyelids-and-ichthyosis/) - Something that happens because of my ichthyosis (and sometimes for other people with the condition) is light sensitivity and extremely dry eyes. Yesterday my eyes were very bad - it took a while for my eyes to stay open, and I wore sunglasses inside for a short time. My lower eyelids are ectropian, meaning they are
- [Face Equality Week - My Best Selfies](https://carlyfindlay.com.au/2020/05/23/face-equality-week-my-best-selfies/) - This week is #FaceEquality week - an initiative by Face Equality International. “Face equality means creating a world where everybody is treated with the same respect regardless of how they look. Face Equality aims to eliminate negative social media activity, broaden representation in the public eye, stamp out appearance discrimination and challenge prejudice... so let's make
- [Talking Beauty at All About Women - Sydney Opera House, and being published on CNN Style](https://carlyfindlay.com.au/2020/05/17/talking-beauty-at-all-about-women-sydney-opera-house-and-being-published-on-cnn-style/) - One of the last things I did, before the world changed due to COVID-19, was speak at All About Women at Sydney Opera House. It was a career highlight! I chatted with Bri Lee and Flex Mami about beauty. We talked about beauty standards and representation, and the role of social media. You can watch
- [Supporting writers during COVID-19](https://carlyfindlay.com.au/2020/04/26/supporting-writers-during-covid-19/) - With writers festivals and events being cancelled due to COVID-19,, it’s so important we keep supporting authors where we can. I know many authors who have been affected - their in person launches cancelled, replaced by online events. This will only continue while we .socially distance. Writers will lose a huge amount of income due
- [Book review - The Year the Maps Changed by Danielle Binks](https://carlyfindlay.com.au/2020/04/25/book-review-the-year-the-maps-changed-by-danielle-binks/) - I will be launching Danielle Binks’ debut middle grade fiction book The Year the Maps Changed with Readings online at 6.30 pm on Thursday 30 April. Danielle is my literary agent and she’s become one of my best friends in the three years since I started working with her. She’s my confidante, fashion advisor and
- [Your Story Matters - intro to memoir with City of Melbourne Libraries](https://carlyfindlay.com.au/2020/04/17/your-story-matters-intro-to-memoir-with-city-of-melbourne-libraries/) - I am so grateful to City of Melbourne Libraries for still keeping my presentation on Introduction to memoir in their calendar. This is the only event that hasn’t been postponed due to COVID-19. I got to film a video in my kitchen. While I’ve been getting dressed as I would for office work every day,
- [Chatting to Darren Hayes on Instagram live](https://carlyfindlay.com.au/2020/04/15/chatting-to-darren-hayes-on-instagram-live/) - What a strange time this is, this life in self isolation. I hope you’re all doing as ok as can be. I’ve home for five weeks now, not venturing further than one suburb away - in walking distance. And while lots of people are taking up baking as a hobby, I’m too busy working to
- [Book review: The Pretty One -  On Life, Pop Culture, Disability, and Other Reasons to Fall in Love With Me by Keah Brown](https://carlyfindlay.com.au/2020/04/01/book-review-the-pretty-one-on-life-pop-culture-disability-and-other-reasons-to-fall-in-love-with-me-by-keah-brown/) - Content warning: internalised ableism, depression, suicide ideation The Pretty One by Keah Brown is a memoir (in the form of a series of essays) on Keah’s experience of being a young disabled black woman. It also features a lot on pop culture - with mentions of films and music in most chapters, and fashion too.
- [Order of Australia](https://carlyfindlay.com.au/2020/01/27/order-of-australia/) - I’ve been awarded an Order of Australia Medal (OAM). It’s for my work with disabled people You can read the whole Australia Day Honours list here. I admit to having a massive case of imposter syndrome - it’s a strange feeling. I’ve known for over a month and haven’t been able to write anything down
- [My review of Say Hello](https://carlyfindlay.com.au/2020/01/10/my-review-of-say-hello/)
- [My 2019 Year in review](https://carlyfindlay.com.au/2019/12/31/my-2019-year-in-review/) - My 2019 was huge - busy, successful, sad, fun, accomplished and adventurous. At times I felt like a hamster on a wheel, running at full speed. I haven’t sat still long enough to reflect on what a ride it’s been, so it’s nice to do so now. I have fitted so much in, I’m proud.
- [New Year’s resolution - make time for the people who make time for me.](https://carlyfindlay.com.au/2019/12/29/new-years-resolution-make-time-for-the-people-who-make-time-for-me/) - There is a weakness I need work on to in 2020. I’ve become more aware of it this year especially, as I’ve had lots of big milestones and events. So this is my resolution. I need to give time to those who continue to show up, and not spend so much time focused on those who
- [Announcing the Growing Up Disabled in Australia contributors and cover](https://carlyfindlay.com.au/2019/12/24/announcing-the-growing-up-disabled-in-australia-contributors-and-cover/) - Black Inc. is pleased to announce the contributors to its new anthology, Growing Up Disabled in Australia. Editor Carly Findlay says: “I am so excited to announce the contributors for Growing Up Disabled in Australia. It was such an honour reading through over 360 submissions – one of the best jobs I’ve ever had. The quality of
- [My speech for University of Sydney’s Disability Inclusion Action Plan launch](https://carlyfindlay.com.au/2019/09/26/my-speech-for-university-of-sydneys-disability-inclusion-action-plan-launch/) - On Tuesday 24 September, I was invited to speak at the launch of Sydney University’s Disability Inclusion Action Plan. A number of esteemed disability leaders spoke at the launch - Doctor Ben Gauntlett (Disability Discrimination Commissioner), Doctor Sheelagh Daniels-Mayes and Professor Jennie Brand-Miller from University of Sydney, as well as Vice Chancellor Michael Spence who
- [How to be a good disability advocate online](https://carlyfindlay.com.au/2019/09/26/how-to-be-a-good-disability-advocate-online/) - In July I did a workshop for the Victorian Council of Social Services - VCOSS - in how to be a good disability advocate online. I covered how to build a social media profile, how to balance work life and online life, and how to be a good ally. It was part of the Empowered
- [Book review: Strangers Assume My Girlfriend is My Nurse by Shane Burcaw](https://carlyfindlay.com.au/2019/07/20/book-review-strangers-think-my-girlfriend-is-my-nurse-by-shane-burcaw/) - Spoilers ahead! I have been following Shane Burcaw on Instagram for a few years and was excited to see he has a new book out - Strangers Assume My Girlfriend is my Nurse. I flew through the book on the plane (excuse the pun!) - it was so easily readable, and relateable. I am loving
- [Book review: Sensitive by Allayne Webster](https://carlyfindlay.com.au/2019/07/11/book-review-sensitive-by-allayne-webster/) - Spoilers ahead! I was sent a book called Sensitive by Allayne Webster - published by UQP. It’s a book I wish Little Carly had. I devoured it in a day. SJ wants to reinvent herself in a new town, changing her name. But she can’t change her skin. Sensitive is a young adult fiction book
- [I love you forever, Camille](https://carlyfindlay.com.au/2019/04/29/i-love-you-forever-camille/) - It’s with immense sadness that I write about my best friend, Camille’s death. Camille - known as CurlyPops - had an incredibly full life, which we celebrated today. Today would also have been her 45th birthday. I know she wasn’t one for resting, so I bet her calendar is full to the brim, wherever she
- [Ichthyosis advocacy fatigue](https://carlyfindlay.com.au/2019/03/11/ichthyosis-advocacy-fatigue/) - I am tired of the fight. I’m tired of being regarded as an oncall helpline, expected to educate people all the time. I’m tired of feeling alone. I’m tired of being seen as difficult because I speak out about the abuse that happens to people with Ichthyosis. I’m tired of the very organisation who is
- [On being called an inspiration](https://carlyfindlay.com.au/2019/02/03/on-being-called-an-inspiration/) - While I’ve been in the media talking about Say Hello, lots of people have called me “an inspiration”, “inspiring” or “inspirational”. I know you mean it as a compliment, but it’s a tricky thing for me and other disabled people to be seen as inspiring. It can be really hard to refuse such a compliment
- [Say Hello Melbourne book launch - hurrah!](https://carlyfindlay.com.au/2019/01/27/say-hello-melbourne-book-launch-hurrah/) - On Thursday, 24 January, my first book, a memoir called Say Hello was launched! My book is in the world. It’s on shelves (as a paperback and ebook) on Tuesday 29 January. It will be in all good book stores, department stores and on ereaders. You can currently pre-order it from Booktopia and Apple Books. I
- [Growing Up Disabled in Australia anthology](https://carlyfindlay.com.au/2018/12/04/growing-up-disabled-in-australia-anthology/) - I am so excited to announce this project I’ve been working on with Black Inc.. I am editing the Growing Up Disabled in Australia anthology. You can read (and listen to me read) the submission guidelines here. Black Inc. is pleased to announce a new anthology, Growing Up Disabled in Australia, to be published in
- [The creation of the Say Hello book cover](https://carlyfindlay.com.au/2018/10/10/the-creation-of-the-say-hello-book-cover/) - I’m so excited to unveil the cover of Say Hello - my memoir - today! It’s been a long time coming. I’ve just handed in my fourth draft, so this seems like a nice reward. Writing a book is a loooong process. It is one reason I haven’t been able to blog a lot. The book
- [Vicarious trauma - I am you, and you will be me. My performance for the Melbourne Writers Festival](https://carlyfindlay.com.au/2018/08/25/vicarious-trauma-i-am-you-and-you-will-be-me-my-performance-for-the-melbourne-writers-festival/) - I finished writing this today, and performed it on stage at the Melbourne Writers Festival today. Thank you for having me MWF, it's always a pleasure. The words have been coming for a while. I'm constantly horrified at the level of oversharing and ableism that I see among some parents. All of these things that
- [Chat with Dylan Alcott on media and brand representation for ANZ](https://carlyfindlay.com.au/2018/05/17/chat-on-media-representation-with-dylan-alcott-for-anz/) - I had a little chat with Dylan Alcott about representation for ANZ Australia's Bluenofes. "If you're not seeing us, you're not looking hard enough.” – I said. Media and brand representation is something I feel strongly about - I really want to see more disabled people feature, so wider society isn't so surprised to
- [Talking microaggressions with Jon Faine on ABC Radio](https://carlyfindlay.com.au/2018/03/28/talking-microaggressions-with-jon-faine-on-abc-radio/) - Today I did an interview with Jon Faine and Sally Warharft on ABC Melbourne. The purpose of the conversation was to demystify microaggressions that I (and other disabled people) face regularly. I think the interview demonstrates the microaggressions I face regularly. Sally invited me on the show after seeing me speak at the Wheeler Centre
- [My speech on choice and control in education and employment for Community Transition Support](https://carlyfindlay.com.au/2018/05/09/my-speech-on-choices-and-control-in-education-and-employment-for-community-transition-support/) - CTS staff and Shanti Wong with Carly Findlay. Image: five people standing in front of banners. They're smiling. I was the keynote speaker at the Community Transition Support (CTS) forum on Tuesday 8 May. I spoke to a group of people working in the specialist education system - teachers, council workers and disability support
- [Be your own hero. My speech to my high school.](https://carlyfindlay.com.au/2014/12/16/be-your-own-hero-my-speech-to-my-high-school/) - Yesterday I went to my high school where I delivered a speech and was inducted onto the wall of honour. I never liked school. I liked the learning part, but I hated the exclusion. And so I talked to the students (and their parents and the teachers) about this, and what they can do to
- [My speech on confidence and resilience at the Australian Tax Office](https://carlyfindlay.com.au/2018/04/30/my-speech-on-confidence-and-resilience-at-the-australian-tax-office/) - Some of you who know me might know that I used to work for the Australian Tax Office (ATO). I never disclosed it when I worked there, because extremely strict social media rules within the code of conduct. But I am able to tell you now, because I resigned in November 2017. I was invited
- [Cyberhate video for Amnesty International](https://carlyfindlay.com.au/2018/04/27/cyber-hate-video-for-amnesty-internarional/) - Last month I was interviewed by Amnesty International about cyberhate. You'll be aware that I have experienced trolling during my time writing online - some severe, some laughable. I spoke about my exprjejeces, and called for social media platforms and police to do more time stop this abuse. The other brave and articulate women featured
- [My highlights from the 2018 Melbourne International Comedy Festival - Natalie Palamides, Loyiso Gola, Wil Anderson, Emma J Hawkins and Kirsty Webeck](https://carlyfindlay.com.au/2018/04/16/my-highlights-from-the-2018-melbourne-international-comedy-festival-natalie-palamides-loyiso-gola-wil-anderson-emma-j-hawkins-and-more/) - I have seen a heap of shows at the Melbourne International Comedy Festival this year. It's the most wonderful time of the year - the city is abuzz with people and laughter. Here are some of my highlights. Some tickets were given to me for review purposes - noted below. Loyiso Gola - Unlearning ‪I
- [Two recent audio pieces I've done - The Wheeler Centre and Made of Human podcast](https://carlyfindlay.com.au/2018/04/05/two-recent-audio-pieces-ive-done-the-wheeler-centre-and-made-of-human-podcast/) - Two audio pieces that I've done have just been uploaded online. I'm really proud of these and excited you can hear them. The first is a recording from Words on Fire at the Wheeler Centre, which took place In February. I gave a speech urging people not to forget about disability in their diversity and feminism
- [Eight disabled women (and one non binary person) you should know this International Women's Day](https://carlyfindlay.com.au/2018/03/08/eight-disabled-women-and-one-non-binary-person-you-should-know-this-international-womens-day/) - Happy International Women's Day! May your mental load be reduced, manteruptions be kept to a minimum and your voices be heard. This year's themes are "No Woman Left Behind" and "Press For Progress". Disabled women are often forgotten in discussions about diversity and violence and media and women in general. So I'm going to let
- [My extraordinary routine - as told to Kill Your Darlings magazine](https://carlyfindlay.com.au/2018/03/07/my-extraordinary-routine-as-told-to-kill-your-darlings-magazine/) - A couple of weeks ago I talked about my work routine to Madeleine Dore from Extraordinary Routines for Kill Your Darlings. If you're interested in how I fit it all in, this article is for you! Click here to read. I talked about balancing it all - my new job at Melbourne Fringe, book writing,
- [Speech for International Women's Day #PressForProgress - and some thoughts on body autonomy](https://carlyfindlay.com.au/2018/03/02/speech-for-international-womens-day-pressforprogress-and-some-thoughts-on-body-autonomy/) - I gave the following speech for the City of Port Phillip's International Women's Day event last night. It was a fabulous event - I spoke alongside writer and activist Celeste Liddle and radio star Jo Stanley - two women I admire greatly. Celeste talked about Aboriginal people use social media for connecting and change; and Jo
- [What if your kid asks you why my face is red and you don't know what to say?](https://carlyfindlay.com.au/2018/02/22/what-if-your-kid-asks-you-why-my-face-is-red-and-you-dont-know-what-to-say/) - I get a lot of questions about how to talk to kids about facial differences and disability. Most of the time I say to kids "I was born like this, like you were born with blue/green/brown/black eyes" and they accept that. Sometimes I tell them about my ointment and other times I talk about
- [A love letter to my body.](https://carlyfindlay.com.au/2018/02/04/a-love-letter-to-my-body/) - This piece was written and performed for the Quippings love show as part of the Emerging Writers Festival at the Malthouse Theatre in Melbourne in June 2017. I also want to add that I feel the medical photography (especially in my experience) is almost never for our benefit, it's always for someone else's.
- [Book update and newsletter](https://carlyfindlay.com.au/2018/02/02/book-update-and-newsletter/) - Some of you might know I'm writing a book! My book is a memoir - from my own experience of living and thriving with a rare, severe skin condition called ichthyosis. It's called Say Hello and is out with Harper Collins later this year. I am hoping that it helps young people with Ichthyosis and
- [The Greatest Showman - upliftspirational exploitation and the able gaze](https://carlyfindlay.com.au/2018/01/18/the-greatest-showman-upliftspirational-exploitation-and-the-able-gaze/) - I've put off writing this post for a few weeks. I guess I didn't want to get sucked into an outrage cycle, and the enormity of tackling representation issues feels overwhelming. Writing about something that impacts on how people like me are perceived, and then enduring the comments section is draining. And representation is also
- [2017. What a big year!](https://carlyfindlay.com.au/2017/12/31/2017-what-a-big-year/) - 2017 The biggest year ever. I can't believe how fast it's gone, and how much I've packed in. How was your year? What have you learned and achieved? And what's planned for 2018? Achievement wise, it was huge. I'm so thankful for all the opportunities, and proud for all I've achieved. Success doesn't come without
- [Shop Your Wardrobe Challenge 2018](https://carlyfindlay.com.au/2017/12/30/shop-your-wardrobe-challenge-2018/) - I love fashion. I buy something new most weeks. But I have too many clothes. And it's becoming a bit ridiculous. I don't need anymore clothes - I should wear the fabulous stuff I have. I wanted to do "buy no new clothes in 2018" - apart from underwear and stockings, though that's a
- [Thirty six](https://carlyfindlay.com.au/2017/12/08/thirty-six/) - It's my birthday today. I'm 36. I feel more comfortable in my skin and confident about my ideas and values than I've ever been. Thirty five was a big one indeed. This week alone has seen me grace the front page of my hometown paper, and see a Beatle in concert! Who would have thought
- [Disability is not a bad thing! - My keynote speech for International Day of People with Disability in Albury Wodonga](https://carlyfindlay.com.au/2017/12/03/disability-is-not-a-bad-thing-my-keynote-speech-for-international-day-of-people-with-disability-in-albury-wodonga/) - Today is International Day of People with Disability. I've been doing a lot of work in my hometown for the Day these past few days. I was interviewed by The Border Mail - the article is here. It made front page of the paper paper! On Friday I gave the keynote speech at the Albury Wodonga combined
- [My concerns about Wonder the film (and how to talk to your kids about Wonder)](https://carlyfindlay.com.au/2017/11/24/my-concerns-about-wonder-the-film-and-how-to-talk-to-your-kids-about-wonder/) - Wonder is out in Australian cinemas this week, and is showing in US and UK cinemas now. I am seeing it on the weekend. (Edit: I've now seen it, and here is my review.) Wonder is the story of Auggie Pullman, a young boy with a facial difference. I'm equally excited and apprehensive about the
- [My review of Wonder the film](https://carlyfindlay.com.au/2017/11/26/my-review-of-wonder-the-film/) - My review of Wonder the film - a close to accurate depiction of living with a facial difference and the impacts of bullying This post contains spoilers. I also received free movie tickets to Wonder from Village Roadshow. Thanks Village! I loved Wonder the film. Loved it. And I'm relieved that I did. This is my
- [Disability slurs in the sporting arena is more than just blokey biffo. It's hate speech.](https://carlyfindlay.com.au/2017/11/21/disability-slurs-in-the-sporting-arena-is-more-than-just-blokey-biffo-its-hate-speech/) - Another uncharacteristic sport post (it contains references to ableism): Cricket Australia is a finalist for a National Disability Award from International Day of People with Disability - Australia. ("The ground-breaking National Cricket Inclusion Championships (NCIC) featured three divisions: blind and vision impaired, deaf and hard of hearing and cricketers with an intellectual disability.") Yet the
- [Why I posed in my underwear](https://carlyfindlay.com.au/2017/11/11/why-i-posed-in-my-underwear/) - Today I posed for photos in my underwear. The world didn't end. I felt fabulous. And I did it as a part of a book showcasing diverse women from around the world. I was a bit apprehensive about doing the Underneath We Are Women photoshoot, to be honest. I was not worried about what others
- [My five tips for journalists and editors writing and talking about disability](https://carlyfindlay.com.au/2017/08/27/my-five-tips-for-journalists-and-editors-writing-and-talking-about-disability/) - A few months back I was asked to do a short piece to camera for ABC RN. It's my five tips for journalists and editors writing and talking about disability. We want to see more disabled people in the media, and this can start with editors commissioning our work. I hope these tips we useful. Thanks
- [The Real and the Imagined History of the Elephant Man - seen as a viewer with a facial difference](https://carlyfindlay.com.au/2017/08/12/the-real-and-the-imagined-history-of-the-elephant-man-as-a-viewer-with-a-facial-difference/) - I've just been to see The Real and the Imagined History of the Elephant Man at The Malthouse. I admit that I went with trepidation - nervous about how disfigurement might be portrayed. I am all too familiar with the language used about people like us, and balk at the idea of a freak show.
- [This is how two different types of Ichthyosis look, feel and are treated.](https://carlyfindlay.com.au/2016/11/23/this-is-how-two-different-types-of-ichthyosis-look-feel-and-are-treated/) - 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 not stop talking. Kyri and I both have Ichthyosis - but different types. It seemed that our commonalities were more
- [Her Words video interview](https://carlyfindlay.com.au/2017/08/08/her-words-video-interview/) - A few months back I did an interview for Her Words - a women's media company that is doing amazing things to share women's stories. I know these videos will help so many people of all ages and genders. I had head good things about the Her Words experience from friends who have been
- [A few thoughts on strangers' curiosity about my appearance - and the way it's justified](https://carlyfindlay.com.au/2017/08/02/a-few-thoughts-on-strangers-curiosity-about-my-appearance-and-the-way-its-justified/) - In the past two weeks there seems to have been an increase on the amount of strangers' rude curiosity in my life. And it's not as if I've been out more - I mostly work from home. So here's what's been happening. (These are Facebook posts, the tense as it happened.) On a tram -
- [Women of Letters - a letter to my best mistake](https://carlyfindlay.com.au/2017/08/01/women-of-letters-a-letter-to-my-best-mistake/) - I am not one to believe in woo-woo, but this year, some strange things have happened. I've put things out to the universe, and the universe has granted them. Ok, so maybe it's just me being committed to achieving a goal after I've told someone about that goal. Ok, it's hard work! It happened when
- [Say Hello! I have a book deal with Harper Collins!](https://carlyfindlay.com.au/2017/07/03/say-hello-i-have-a-book-deal-with-harper-collins/) - I've got some news that I can finally share! I have a book deal! I mentioned earlier this year that I'd signed to an agent - Jacinta di Mase. She and her team worked their magic, and within two months of sending my book proposal to her, I had five publication offers and from
- [How to be a good non-disabled feminist - my speech at Progress 2017](https://carlyfindlay.com.au/2017/06/13/how-to-be-a-good-non-disabled-feminist-my-speech-at-progress-2017/) - When I'm faced with exclusion and ableism, I find it productive to use these stories in a piece of writing or a speech. I did that at a conference - I spoke in front of 1500 people at the Melbourne Town Hall (!) last week. It was for Progress 2017. A couple of months ago
- [You Can't Ask That viewing party and Refreshments Provided Podcast live episode](https://carlyfindlay.com.au/2017/06/26/you-cant-ask-that-viewing-party-and-refreshments-provided-podcast-live-episode/) - Last month I held a viewing party for the facial differences episode of You Can't Ask That. My podcast co-host and I also recorded a live episode of Refreshments Provided. We had so much fun! About 40 people who came to Hares and Hyenas to watch You Can't Ask That and to watch the live
- [Chats on BBC Ouch and In Sickness and in Health podcasts](https://carlyfindlay.com.au/2017/06/24/chats-on-bbc-ouch-and-in-sickness-and-in-health-podcasts/) - Earlier this year I was featured on BBC Oich podcast, and also In Sickness and in Health. BBC was recorded at 1.30 am in the morning my time - which might have shown in my voice. And In Sickness and in Health was recorded last year - a little while before I had my wisdom
- [Homelessness, disability and mental illness - article for SBS](https://carlyfindlay.com.au/2017/06/23/homelessness-disability-and-mental-illness-article-for-sbs/) - I was commissioned to write a piece on homelessness, disability and mental illness for SBS. I interviewed a friend - Heidi - and Melbourne City Mission. I'm very grateful for their time. Here's the article. I really enjoy writing for SBS - some of their topics have been outside of my comfort zone, and the
- [Chats on RN Books and Arts and ABC Radio Melbourne](https://carlyfindlay.com.au/2017/06/21/chats-on-rn-books-and-arts-and-abc-radio-melbourne/) - Last week was a big media day! I had two chats on ABC Radio (RN and Melbourne) as well as filming a video for their Facebook page. The video is yet to come, but I can share the audio of the radio interviews. Fiona Tuomy (from Writers Victoria) and I talked to Michael Cathcart on
- [Chats on DISrupt the Media and The Accessible Stall podcasts](https://carlyfindlay.com.au/2017/06/19/chats-on-disrupt-the-media-and-the-accessible-stall-podcasts/) - I've been on a couple of international podcasts recently. After chatting with Dominick Evans, Kyle Khachadurian and Emily Ladau online for years, it was lovely to hear their voices over Skype. Dominick, Kyle and Emily are passionate and accomplished disability activists. I wish we lived closer. It was an honour to be invited onto their podcasts.
- [Facial difference as evil in Wonder Woman (and role models you should follow).](https://carlyfindlay.com.au/2017/06/11/facial-difference-as-evil-in-wonder-woman-and/) - I went to see Wonder Woman this afternoon. I really enjoyed it - loved Diana's strength, resilience, no bullshit attitude and her belief in love. The costumes were amazing. But you know what saddened me? That the villain - Dr Poison - had a facial difference. Jason mentioned it to me when we recorded our
- [Behind the scenes on You Can't Ask That](https://carlyfindlay.com.au/2017/05/03/behind-the-scenes-on-you-cant-ask-that/) - Tonight is the screening of the facial differences episode of You Can't Ask That on the ABC. It's on at 9.00 pm. I am so excited! I'm having a viewing party in Melbourne - details here. You can get your tickets at the venue if you want to come. I was asked to take part in
- [Disability slurs in football must be given the same punishment as racial and homophobic slurs.](https://carlyfindlay.com.au/2017/04/26/disability-slurs-in-football-must-be-given-the-same-punishment-as-racial-and-homophobic-slurs/) - This piece contains ableist and racist language. It also contains discussion about football, which is uncharacteristic of me. Heath Shaw, a Greater Western Sydney footballer, used the R word toward another player as an on-field sledge last Saturday. He apologised almost immediately, and so did commentators. The AFL and Greater Western Sydney Giants are not
- [What kind of person laughs at a stranger's face?](https://carlyfindlay.com.au/2017/04/09/what-kind-of-person-laughs-at-a-strangers-face/) - What kind of person laughs at a stranger's face? I went to see Jimmy Barnes at the Regent Theatre last night. Twenty minutes before the show, I queued up for a bottle of water. A woman (probably in her 50s) in front of my turned around and saw me. She laughed at me. I asked
- [This is what my Ichthyosis is like: Under-boob papercuts](https://carlyfindlay.com.au/2017/04/08/this-is-what-my-ichthyosis-is-like-under-boob-papercuts/) - This is what (my) ichthyosis - Netherton's syndrome - feels like:: Papercuts in the under-boob region. I got out of the shower and put ointment on. I start with my face, then my feet and up my body. Face, feet, knees and chest, knees and chest. As I bent over, boobs hanging down, I felt
- [David O'Doherty and Josie Long at Melbourne International Comedy Festival 2017](https://carlyfindlay.com.au/2017/04/05/david-odoherty-and-josie-long-at-melbourne-international-comedy-festival-2017/) - I was given tickets to two shows at the Melbourne International Comedy Festival in exchange for honest reviews. The Melbourne International Comedy Festival is one of my favourite times of the year - so much talent and so many laughs. I love the buzz in Melbourne! I haven't been for a couple of years, so
- [Arnold Schwarzenegger the Ableism Terminator, and disability abuse](https://carlyfindlay.com.au/2017/03/29/arnold-schwarzenegger-the-ableism-terminator-and-disability-abuse/) - This post mentions of violence towards people with disability. I've seen Arnold Schwarzenegger's response to ableist language on his Facebook page. Many people have let me know. Someone on his Facebook page made an ableist comment about the Special Olympics, and Arnold gave a cracker response. He shut down the troll. He's the ableism terminator.
- [I'll be featuring on ABC's You Can't Ask That! Come to a Melbourne screening!](https://carlyfindlay.com.au/2017/03/28/ill-be-featuring-on-abcs-you-cant-ask-that-come-to-a-melbourne-screening/) - I'm excited to be featured on You Can't Ask That on ABC TV! You Can't Ask That asks groups of misunderstood, judged or marginalised Australians the awkward, inappropriate or uncomfortable questions you've always wanted to know the answers to, but have always been too afraid to ask. My episode features people with facial differences.
- [I signed to a literary agent!](https://carlyfindlay.com.au/2017/03/20/i-signed-to-a-literary-agent/) - Things have been quiet on this blog. I know. I thought that through working a part time day job and freelancing, I'd have more time. But instead I've been joyously busier than ever. It's been quite wonderful. I wasn't expecting to achieve the many things that I have these past six months. There's been radio, TV,
- [My involvement in Cyber Hate with Tara Moss](https://carlyfindlay.com.au/2017/03/15/my-involvement-in-cyber-hate-with-tara-moss/) - Six months ago - just before I went overseas - I worked on a secret project with Tara Moss. She's a model and author, and anti bullying campaigner. The project was a TV show called Cyber Hate, and it airs on abc2 tonight, as well as ABC Iview. Some of my friends feature in it
- [A death in the Ichthyosis community. When we lose one of our own.](https://carlyfindlay.com.au/2017/03/08/a-death-in-the-ichthyosis-community-when-we-lose-one-of-our-own/) - I woke up to some devastating news last Saturday. My friend Stephanie died unexpectedly and suddenly. She was 23. You might recognise Stephanie from my blog. Stephanie is a wife and mother to two toddlers. She made history, being the first woman with Harlequin Ichthyosis to have children. She lived for her family. Our
- [Don't let the world make you feel your skin, face and body should not be seen.](https://carlyfindlay.com.au/2017/02/10/dont-let-the-world-make-you-feel-your-skin-face-and-body-should-not-be-seen/) - 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 out for those. Tonight I wrote this for Facebook and thought I'd publish it here. This is what ichthyosis
- [Seven books to help kids with Ichthyosis (and help kids learn about Ichthyosis).](https://carlyfindlay.com.au/2016/11/20/seven-books-to-help-kids-with-ichthyosis-and-help-kids-learn-about-ichthyosis/) - 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 - and I asked if I could collate them and others I've found useful into one blog post. They said yes, of course. It's
- [Meet me for a gallery wander and a drink!](https://carlyfindlay.com.au/2016/11/26/meet-me-for-a-gallery-wander-and-a-drink/) - 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 Instagram. It's my birthday in December, there have been big milestones on my socials, and my blog turns 7 too, so what
- [Two pieces I've written for the media on the weekend - ABC and Kidspot](https://carlyfindlay.com.au/2016/12/04/two-pieces-ive-written-for-the-media-on-the-weekend-abc-and-kidspot/) - 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 public news service) which I was so excited and proud to do. This is the first in a series about disability
- [My face scared my cleaner away today](https://carlyfindlay.com.au/2016/12/05/my-face-scared-my-cleaner-away-today/) - 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 control, and sometimes there's a few bits of wayward skin hanging off my face and hair. This is who
- [My year of writing - reflections on my birthday](https://carlyfindlay.com.au/2016/12/07/my-year-of-writing-reflections-on-my-birthday/) - 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 even feel like anyway?Thirty four was a big year. I got married, went overseas, changed jobs -
- [My blog turns 7 today. An article I wrote. Thank you for being a friend.](https://carlyfindlay.com.au/2016/12/16/my-blog-turns-7-today-an-article-i-wrote-thank-you-for-being-a-friend/) - 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 voice has become much bigger. (Some times I get into arguments with people on the Internet - I work very hard at being diplomatic.) Here's an opinion that
- [On guard. I'm aware of the need to manage other people's reactions towards me.](https://carlyfindlay.com.au/2016/12/19/on-guard-im-aware-of-the-need-to-manage-other-peoples-reactions-towards-me/) - 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 also because of the varying quality of the cleaning. Part of me wanted to stay home, so I could greet them, smiling in a
- [Healthcare and disability article for the ABC](https://carlyfindlay.com.au/2016/12/20/healthcare-and-disability-article-for-the-abc/) - 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 woman, a woman from rural Victtoria and a young man. They were so generous with their stories. Here's the final piece. Here's a blurb:"Those of us
- [One year since Cripping The Mighty](https://carlyfindlay.com.au/2016/12/22/one-year-since-cripping-the-mighty/) - 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 writers and activists spoke up on social media, and created a lot of content about the issues, offered advice to writers and editors, and a few of us (now former) writers
- [Talking authentic disability representation in media on the Neighbuzz podcast](https://carlyfindlay.com.au/2016/12/28/talking-authentic-disability-representation-in-media-on-the-neighbuzz-podcast/) - 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, who I've been chatting to on Twitter for years. It was so good to finally meet in real life! I love Neighbuzz because it's more than just recapping
- [Giggling on the Just A Spoonful podcast](https://carlyfindlay.com.au/2016/12/29/giggling-on-the-just-a-spoonful-podcast/) - 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 to be on the Just a Spoonful podcast with Kaitlyn Plyley earlier in the year. I had SUCH a giddy crush on this
- [If 10 year old me could see my life in 2016.](https://carlyfindlay.com.au/2016/12/31/if-10-year-old-me-could-see-my-life-in-2016/) - 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 that photo was taken in 1992. I snapped a photo of the 24 year old picture in a frame
- [Support group for Australian and New Zealand women living with Ichthyosis.](https://carlyfindlay.com.au/2017/01/07/support-group-for-australian-and-new-zealand-women-living-with-ichthyosis/) - 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, you are welcome to join. Women can discuss sensitive topics they might not feel comfortable discussing elsewhere. Here is the link to join the group.I've limited the
- [My wedding story in New Idea magazine! Why I'm changing the narrative of disability in the mainstream media.](https://carlyfindlay.com.au/2017/01/09/my-wedding-story-in-new-idea-magazine-why-im-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?)
- [My chat on The Osher Günsberg Podcast](https://carlyfindlay.com.au/2016/11/27/my-chat-on-the-osher-gunsberg-podcast/) - (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 podcast royalty to me, so this day was A Big Deal. In person, he's very funny, very welcoming and a good listener. I turned up at
- [Buy a 2017 Walander to support heart and lung transplant patients.](https://carlyfindlay.com.au/2016/12/10/buy-a-2017-walander-to-support-heart-and-lung-transplant-patients/) - 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? (Maybe that last one is just me - I don't have a clock in the house either!)My BFF Camille has created the Walander - featuring
- [Silent Tears exhibition at MAMA Albury](https://carlyfindlay.com.au/2016/12/27/silent-tears-exhibition-at-mama-albury/) - 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 heartfelt and the stories of the women show bravery and endurance. Silent Tears is an exhibition showing photos of women with disability who have survived violence. The photos
- [You are not a good disability ally if you're ableist.](https://carlyfindlay.com.au/2017/01/16/you-are-not-a-good-disability-ally-if-youre-ableist/) - This post contains some ableist language that might be triggering 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.Knowing a disabled person, or working with them is not a free pass to
- [Ichthyosis and medical shaming.](https://carlyfindlay.com.au/2016/11/13/ichthyosis-and-medical-shaming/) - 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 non prescribed treatments from the unqualified. It fits into the category of unsolicited advice, doesn’t it? The most amusing is when people tell
- [Offer Your Seat - the badge commuters wear to show they are willing to give up their seat on public transport.](https://carlyfindlay.com.au/2016/11/06/offer-your-seat-the-badge-commuters-wear-to-show-they-are-willing-to-give-up-their-seat-on-public-transport/) - 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 seat to pregnant, elderly and disabled commuters. He's changing the world. This initiative will make such a difference to people like me - I
- [The death of 11 year old Bethany - bullied because of her appearance](https://carlyfindlay.com.au/2016/11/01/the-death-of-11-year-old-bethany-bullied-because-of-her-appearance/) - 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 herself because bullies became too much for her. I read the news report and couldn't hold back the tears. They bullied her because of her appearance -
- [The time I felt silenced by a person in power. (And why it's taken me two years to speak up.)](https://carlyfindlay.com.au/2016/10/30/the-time-i-felt-silenced-by-a-person-in-power-and-why-its-taken-me-two-years-to-speak-up/) - 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 been following the US Presidential Election closely, other than the odd headline revealing what a dangerous man Donald Trump is.
- [Launching our podcast - Refreshments Provided](https://carlyfindlay.com.au/2016/10/23/launching-our-podcast-refreshments-provided/) - 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, mostly based on food, but we talk about what we've been watching, reading and doing too.You can listen for free on iTunes
- [The murder of disabled children is often excused.](https://carlyfindlay.com.au/2016/10/19/the-murder-of-disabled-children-is-often-excused/) - 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 earlier this week.Two parents, their children and their dog were found dead in their home. Police report an elaborate gas system was deliberately set up in the home. Media states the
- [Honeymooning](https://carlyfindlay.com.au/2016/09/30/honeymooning/) - 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. Follow my holiday pics on Instagram and Facebook.
- [Ichthyosis in developing countries: the stigma experienced in Africa.](https://carlyfindlay.com.au/2016/09/18/ichthyosis-in-developing-countries-the-stigma-experienced-in-africa/) - 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.The children haven't received adequate medical treatment and are hidden from their community. I've been told that children with disabilities are killed or
- [Australian Centre for Leadership for Women Diversity Awards](https://carlyfindlay.com.au/2016/09/15/australian-centre-for-leadership-for-women-diversity-awards/) - 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, culminating so far in three national awards for women’s advancement, with more than 60 national recipients being recognised and awarded, including women, men and organisations. This year
- [Ichthyosis in developing countries - India](https://carlyfindlay.com.au/2016/09/11/ichthyosis-in-developing-countries-india/) - 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) Kapase live in Pune, India. The children, along with the parents, Sarika and Santosh Kapase, spoke to journalist Charnamrit Schadeva about the struggles of living
- [Robyn Lambird and Madeline Stuart - Aussie models with disabilities rocking the fashion world.](https://carlyfindlay.com.au/2016/09/08/robyn-lambird-and-madeline-stuart-aussie-models-with-disabilities-rocking-the-fashion-world/) - 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, Target features a young woman with a disability in its catalogue. Robyn Lambird, who uses a wheelchair, models activewear. Above her smiling face, she's quoted:
- [Launching my Patreon account!](https://carlyfindlay.com.au/2016/09/05/launching-my-patreon-account/) - 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 appearance diversity and disability. And I provide advice through social media. I'm always so glad to know my blog and advice has been
- [Overwhelm – the perils of living what I am writing about.](https://carlyfindlay.com.au/2016/08/28/overwhelm-the-perils-of-living-what-i-am-writing-about/) - 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 experience is always quick. Then I got so overwhelmed that I couldn't finish it. I could feel the overwhelm creep up
- [This is what it feels like to be prayed for because of my disability. And it's not ok.](https://carlyfindlay.com.au/2016/08/28/this-is-what-it-feels-like-to-be-prayed-for-because-of-my-disability-and-its-not-ok/) - 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 the tram, a woman offered me a seat. I smiled and thanked her but shook my head. I was
- [Language really does matter when reporting about people living with Ichthyosis. Harper's real story.](https://carlyfindlay.com.au/2016/08/18/language-really-does-matter-when-reporting-about-people-living-with-ichthyosis-harpers-real-story/) - 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 like an alien. It was very traumatic""Her bizarre condition."Those three excerpts is all I took from the article, and I am someone with Ichthyosis.
- [My chat on the Fully Sick podcast](https://carlyfindlay.com.au/2016/08/17/my-chat-on-the-fully-sick-podcast/) - 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 is such a great conversationalist. I really opened up in our chat - to the point that this needs a content
- [Nine nice things to do for your friend whose chronic illness has
exacerbated.](https://carlyfindlay.com.au/2016/08/14/nine-nice-things-to-do-for-your-friend-whose-chronic-illness-hasexacerbated/) - 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 when I get sick(er), because the chronic illness is present all the time. It's not like breaking a
- [DonateLife Week - End the wait. Stories from people whose lives have been changed by organ donation.](https://carlyfindlay.com.au/2016/08/05/donatelife-week-end-the-wait-stories-from-people-whose-lives-have-been-changed-by-organ-donation/) - 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 by a transplant, have provided their stories, which has made writing this from my hospital bed really easy. DonateLife Week provides
- [This is what my disability looks like.](https://carlyfindlay.com.au/2016/07/31/this-is-what-my-disability-looks-like/) - 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 some who are who unable to accomplish certain abilities that the average person has no trouble with such as
- [The silence around the Sagamihara disability murders.](https://carlyfindlay.com.au/2016/07/28/the-silence-around-the-sagamihara-disability-murders/) - 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, or the crisis lines in your country. This picture remembers the disabled people who were murdered in an act of terror and
- [Out of office.](https://carlyfindlay.com.au/2016/07/22/out-of-office/) - 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 but don't want to push myself until I'm well. I'll be on the socials - Facebook, Instagram and
- [This is how it feels when you say “I don't see your disability”.](https://carlyfindlay.com.au/2016/07/18/this-is-how-it-feels-when-you-say-i-dont-see-your-disability/) - 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 you say "I don’t see your disability", you’re not comfortable with disability.When you say "I don’t see your disability", and you’re trying to focus on all my
- [Thank you for 'buying me drinks'.](https://carlyfindlay.com.au/2016/07/14/thank-you-for-buying-me-drinks/) - 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 on the blog and social media, I didn't know how it would be received. Would
- [On the weight of expectations.](https://carlyfindlay.com.au/2016/07/10/on-the-weight-of-expectations/) - 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 lofty. There's a standard for me, yet a standard for others. I will fail you. But the weight of my own
- [8 of the coolest podcasts right now.](https://carlyfindlay.com.au/2016/07/07/8-of-the-coolest-podcasts-right-now/) - Firstly, big apologies for the shonky layout of this post. My blogging app on the iPad has crashed (and burned) and then it was huge work editing on the mac. Sorry. Editing is the worst.Last week I brought you six excellent podcasts about
- [Meeting Tara Moss and being empowered to tackle online abuse in real time.](https://carlyfindlay.com.au/2016/07/03/meeting-tara-moss-and-being-empowered-to-tackle-online-abuse-in-real-time/) - 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 need to talk to someone about online abuse, phone Lifeline on 13 11 14, Kids Helpline on 1800 55
- [Winter days](https://carlyfindlay.com.au/2016/07/03/winter-days/) - 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 podcasts are ahead of me. It's been cold, though. The other day, I was so cold I wore a
- [Happy social media day!](https://carlyfindlay.com.au/2016/06/30/happy-social-media-day/) - 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 has meant that we can tell our stories and have an audience. We no longer have to rely (or grimace at) mainstream media
- [Six podcasts about disabilities, chronic illnesses and mental health that I love.](https://carlyfindlay.com.au/2016/06/26/six-podcasts-about-disabilities-chronic-illnesses-and-mental-health-that-i-love/) - 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. And the first-person perspective is so valuable - and increasingly more prevalent. Five years ago, it was other people telling out stories.
- [Me Before You - disability as a tragedy and the laughing able gaze.](https://carlyfindlay.com.au/2016/06/15/me-before-you-disability-as-a-tragedy-and-the-laughing-able-gaze/) - This post discusses suicide. If you need to talk to someone, please call Lifeline on 13 11 14, or QLife 3pm-12am on 1800 184 527, or the equivalent support service in your country. It also contains spoilers about the book and the film Me Before You. Me Before You is released in Australian cinemas today. I
- [Of child bearing age. At the doctor.](https://carlyfindlay.com.au/2016/06/09/of-child-bearing-age-at-the-doctor/) - 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-obesity posters, as she took my blood pressure. I hoped she wasn't going to ask me to weigh myself.My blood pressure
- [Speaking Out by Tara Moss (I'm a contributor within!)](https://carlyfindlay.com.au/2016/06/05/speaking-out-by-tara-moss-im-a-contributor-within/) - 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 win blogging competitions. Since that day, she's been incredibly supportive of me and my work. Tara
- ["When are the babies coming?"](https://carlyfindlay.com.au/2016/06/02/when-are-the-babies-coming/) - 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 our wedding and five people asked us about babies. It was awkward. These questions have made me
- [9 Instagram stars who have Ichthyosis. (And please consider buying me a drink!)](https://carlyfindlay.com.au/2016/05/30/9-instagram-stars-who-have-ichthyosis-and-please-consider-buying-me-a-drink/) - 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 others who know what you go through, isn't it? And Instagram is a good platform to use when you're not feeling
- [Ecdysis. Tender soles.](https://carlyfindlay.com.au/2016/05/29/ecdysis-tender-soles/) - 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 process is called Ecdysis. Ecdysis is a necessary process for growth and movement, and happens to snakes, lizards, turtles and iguanas.
- [Ichthyosis Awareness Month: Vereniging voor Ichthyosis Netwerken - the Dutch Association for Ichthyosis Networks.](https://carlyfindlay.com.au/2016/05/26/ichthyosis-awareness-month-vereniging-voor-ichthyosis-netwerken-the-dutch-association-for-ichthyosis-networks/) - 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 amazing job to bring together people with Netherton's Syndrome (the type of Ichthyosis I have) in her country. I love the idea of a support group being run
- [How to cope with the emotional aspects of Ichthyosis – suggested by people living with the condition.](https://carlyfindlay.com.au/2016/05/25/how-to-cope-with-the-emotional-aspects-of-ichthyosis-suggested-by-people-living-with-the-condition/) - 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 on raising awareness, which is GREAT, but it's hard to find any tangible ideas for children, young adults and adults to
- [Choosing clothes to accommodate ichthyosis.](https://carlyfindlay.com.au/2016/05/22/choosing-clothes-to-accommodate-ichthyosis/) - 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 Ichthyosis. I am very proud of who I am. However, I do cover up to be comfortable.
- [Ichthyosis Awareness Month: Crystal's video](https://carlyfindlay.com.au/2016/05/19/ichthyosis-awareness-month-crystals-video/) - 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 hope she catches a break soon. Many people think Ichthyosis is *just* a skin condition, nowhere near a disability. But the barriers that Crystal
- [Going to the dentist.](https://carlyfindlay.com.au/2016/05/15/going-to-the-dentist/) - 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 eating anything. It just broke after I poked it with my tongue. It was about a quarter of
- [Ichthyosis Awareness: using Moo Goo cream to de-scale my scalp.](https://carlyfindlay.com.au/2016/05/12/ichthyosis-awareness-using-moo-goo-cream-to-de-scale-my-scalp/) - 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 have noticed from photos that my scalp gets flaky, and my hair is pretty short. I wrote about my
- [Our wedding day: styling it beautifully.](https://carlyfindlay.com.au/2016/05/10/our-wedding-day-styling-it-beautifully/) - 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 exactly what I wanted. As a blogger, I guess my profile was on my mind - how would it
- [When the media directs you not to google Ichthyosis - and how I'm changing that.](https://carlyfindlay.com.au/2016/05/08/when-the-media-directs-you-not-to-google-ichthyosis-and-how-im-changing-that/) - 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 for Ichthyosis on Twitter. I want to know what people are saying about the skin condition that I have. I also don’t want to know. The Ichthyosis Twitter stream
- [Ichthyosis Awareness Month: Rethinking Kindness - a guest post by Ainsley Kyder-Gould. (Plus download True Blue Hand.)](https://carlyfindlay.com.au/2016/05/05/ichthyosis-awareness-month-rethinking-kindness-a-guest-post-by-ainsley-kyder-gould-plus-download-true-blue-hand/) - 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 our wedding. Oh my the cuteness! The week before our wedding, Ainsley sent me a video of her daughter blowing me kisses for
- [Our wedding day: the video.](https://carlyfindlay.com.au/2016/05/02/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
- [Ichthyosis Awareness Month 2016 - we must move past raising awareness.](https://carlyfindlay.com.au/2016/04/30/ichthyosis-awareness-month-2016-we-must-move-past-raising-awareness/) - 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 scale' and is the name of a group of genetic skin diseases that cause dry, scaly, thickened skin. The condition is usually present at birth or
- [Our wedding day: all the pretty dresses](https://carlyfindlay.com.au/2016/04/27/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
- [The Dressmaker Exhibition at Ripponlea Estate.](https://carlyfindlay.com.au/2016/04/25/the-dressmaker-exhibition-at-ripponlea-estate/) - 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. What a beautiful, opulent experience, seeing the Parisian inspired fashions from the film. I saw The Dressmaker film with my Mum last
- [Our wedding day: official photography by Fresh Photography](https://carlyfindlay.com.au/2016/04/23/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.
- [Having a face that scares people.](https://carlyfindlay.com.au/2016/04/22/having-a-face-that-scares-people/) - 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 the before hours post office on my way to work today, rang the doorbell and the woman who answered was physically shocked.
- [Ableism exists.](https://carlyfindlay.com.au/2016/04/19/ableism-exists/) - 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 exist. Hashtags like #AbleismExists (and #CrippingTheMighty and #CripTheVote) are powerful online movements of solidarity. And movements like these really do catch the attention
- [Four ways to have a waste-free wedding.](https://carlyfindlay.com.au/2016/04/17/four-ways-to-have-a-waste-free-wedding/) - 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 a photo and some keepsakes from the I realised we didn't have much 'stuff' leftover from the day,
- [The time I chatted on The Aussie Bloggers Podcast and with Clare Bowditch.](https://carlyfindlay.com.au/2016/04/16/the-time-i-chatted-on-the-aussie-bloggers-podcast-and-with-clare-bowditch/) - 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 Bloggers Podcast. We chatted by Skype and while there were a lot of laughs, I covered some deep stuff.
- [Our wedding day: the ceremony](https://carlyfindlay.com.au/2016/04/10/our-wedding-day-the-ceremony/) - (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, here's a photo of Adam and Jason looking amazing. I was upstairs waiting for our guests to enter the venue,
- [Our wedding day: getting ready.](https://carlyfindlay.com.au/2016/04/05/our-wedding-day-getting-ready/) - (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 photos from friends, it's so lovely to see the memories.The day before the wedding, I came down with a cold.
- [Our wedding day: many thanks and about the venue](https://carlyfindlay.com.au/2016/04/03/our-wedding-day-many-thanks-and-about-the-venue/) - (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 obsessed with poring over photos, recalling memories and debriefing about what happened on the day. And the two weeks since our wedding has been lovely
- [I didn't want to be a burden on our minimoon.](https://carlyfindlay.com.au/2016/03/29/i-didnt-want-to-be-a-burden-on-our-minimoon/) - (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 spend a week in bed because my skin was so sore.So it was inevitable that I'd be sick
- [We're married!](https://carlyfindlay.com.au/2016/03/21/were-married/) - 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 wishes you've left us for our wedding day - we feel very loved.Thank you for being
- [Today is my wedding day.](https://carlyfindlay.com.au/2016/03/19/today-is-my-wedding-day/) - 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, hopefully having fun!I can't wait to see Adam in a suit - most days he's
- [Know your worth. Speaking up about non-payment.](https://carlyfindlay.com.au/2016/03/13/know-your-worth-speaking-up-about-non-payment/) - 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 the question of payment. I didn't raise the issue of payment because I thought it might be raised by the organiser. I also
- [How altering my wedding dress changed the way I saw myself.](https://carlyfindlay.com.au/2016/03/06/how-altering-my-wedding-dress-changed-the-way-i-saw-myself/) - 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 that I would be spending more time in the dress while it's been altered than on the wedding day! I'm very
- [My hens party at Crafternoon and Lady Carolina](https://carlyfindlay.com.au/2016/02/28/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
- [Hear me on Humans of Twitter podcast!](https://carlyfindlay.com.au/2016/02/25/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
- [There are no wins in having it worse. Chronic illness and disability
hierarchy.](https://carlyfindlay.com.au/2016/02/17/there-are-no-wins-in-having-it-worse-chronic-illness-and-disabilityhierarchy/) - 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
- [Lovely thank you gifts for your bridal party](https://carlyfindlay.com.au/2016/02/14/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
- [The unofficial biography: #FashionAngel. Parodying inspiration porn.](https://carlyfindlay.com.au/2016/02/10/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
- [Coke is my washing machine miracle - it de-greases clothes and the
machine.](https://carlyfindlay.com.au/2016/02/07/coke-is-my-washing-machine-miracle-it-de-greases-clothes-and-themachine/) - 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
- [Taking stock - February 2016](https://carlyfindlay.com.au/2016/02/03/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.
- [Ichthyosis awareness: Accepting My Limits - a guest post from Hunter Steinitz.](https://carlyfindlay.com.au/2016/01/31/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
- [A lesson in responding to a kid's shouty, pointy curiosity about my face.](https://carlyfindlay.com.au/2016/01/27/a-lesson-in-responding-to-a-kids-shouty-pointy-curiosity-about-my-face/) - 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 REALLY tiring.A woman was staring at me a lot. And so I went a bit extreme. Instead of saying hello or
- [What if I asked you whether you can have sex?](https://carlyfindlay.com.au/2016/01/24/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
- [#AppearanceDiversity: help find Ellen a flatmate in Adelaide](https://carlyfindlay.com.au/2016/01/23/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
- [Meeting Nigella Lawson. 'I really love the taste of these sentences.'](https://carlyfindlay.com.au/2016/01/20/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
- [Seven things Julia Gillard taught me when I met her.](https://carlyfindlay.com.au/2016/01/17/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
- [Dinner with a stranger.](https://carlyfindlay.com.au/2016/01/13/dinner-with-a-stranger/) - (Image: dessert: a quenelle of blueberry sorbet, a rectangle of goats cheese cake, sprinkled with puffed quinoa and sultanas, on a black plate)My life felt like a movie last Monday evening. I had planned on going home, setting up Apple TV, cooking a quick meal and writing until Adam got home late from a job.
- [An open letter to The Mighty: being mighty outspoken means getting mightily shut out.](https://carlyfindlay.com.au/2016/01/12/an-open-letter-to-the-mighty-being-mighty-outspoken-means-getting-mightily-shut-out/) - If you read and share content from the disability website The Mighty, what you're about to read here might make you rethink that.The Mighty editors have removed many of the disability self advocates (and non disabled advocates) from the very community they're trying to serve.You might be aware of the issues myself and many other
- [Stop praying for and exploiting disabled children and adults on Facebook.](https://carlyfindlay.com.au/2016/01/10/stop-praying-for-and-exploiting-disabled-children-and-adults-on-facebook/) - "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 picture. Quite often pictures of people, especially children, with disabilities or visible difference are appropriated by heartless people who use the
- [Appearance diversity, The Undateables and online disability hate speech.](https://carlyfindlay.com.au/2016/01/07/appearance-diversity-the-undateables-and-online-disability-hate-speech/) - (Image description: The Sun Facebook page, 5 January 2016. Steve and Vicky Carruthers on their wedding day. Text: "I don't care if my child has Crouzon or Downs Syndrome or any syndrome. We want to bring a life into this world and make our child feel happy, not ashamed, about who they are." The Undateables
- [I wrote a poem.](https://carlyfindlay.com.au/2016/01/03/i-wrote-a-poem/) - It's a new year and as I wrote last week, I just want to write. I used to write poetry in my late teens and early twenties. There are spiral bound books full of scribbled teenage dreams in my wardrobe. They were mostly about boys who broke my heart. Really lame.I had another go, 17
- [This New Year's Eve, don't beat yourself up for what you haven't achieved - feel good about what you have achieved.](https://carlyfindlay.com.au/2015/12/30/this-new-years-eve-dont-beat-yourself-up-for-what-you-havent-achieved-feel-good-about-what-you-have-achieved/) - As the sun sets on the year that's past, especially, there are so many voices telling us that what we're doing isn't enough. I've found this particularly as blogger - not even in December, but all year actually. In a world where everyone is a diet expert and there are people who call themselves social
- [A handmade quilt for Christmas.](https://carlyfindlay.com.au/2015/12/26/a-handmade-quilt-for-christmas/) - Mum made Adam and I a quilt for Christmas. It was the best present - a labour of love. So many hours of work went into this. Look how proud she is! She spent many years making it - I remember seeing the fabric when my grandmother was still alive. I love it and I
- [The problems with The Mighty, and my suggestions for improvement.](https://carlyfindlay.com.au/2015/12/24/the-problems-with-the-mighty-and-my-suggestions-for-improvement/) - My thoughts about disability website The Mighty have been brewing for some time now. I'm overwhelmed with words as I write this piece. But it's time I addressed this. It's a long post, but I've done my best to clarify my feelings and do some research to back up my claims.This week, The Mighty published
- [It's called love.](https://carlyfindlay.com.au/2015/12/23/its-called-love/) - Me: brushes my skin out of Adam's hair.Adam: "Oi!"Me: "You got some of my skin in your hair."Adam: "It's called love."Heart melted.For years I apologised about my skin getting on others, getting on surfaces. Even though I said I wouldn't, I still do.Every time I go to toilet at work, I wipe up my skin
- [Five Christmas gifts from the heart, not from the wallet.](https://carlyfindlay.com.au/2015/12/21/five-christmas-gifts-from-the-heart-not-from-the-wallet/) - My family doesn't do a big Christmas. It's always simple presents, good food, and in recent years, a sleep in and then volunteering at a community Christmas. I do love giving gifts, and have chosen some exciting ones for loved ones this year. I can't wait to see reactions as presents are unwrapped on Christmas
- [It's ok to do nothing.](https://carlyfindlay.com.au/2015/12/20/its-ok-to-do-nothing/) - It's ok to do nothing. I've given myself permission to do nothing this weekend. The weather has had an influence too. It's been too hard for me to do anything over this hot weekend. (And I've felt a little guilty doing nothing while Adam has been outside working hard the whole weekend.) I had intentions
- [Today my blog is six!](https://carlyfindlay.com.au/2015/12/16/today-my-blog-is-six/) - My Facebook memories reminded me that today my little blog turns six years old! Six!I know I haven't written much lately. I want to, and it's so easy not to. It's been very busy. But also I have a lot to say and I am mindful of not saying it all, all the time. I
- [My very own Instagram Husband](https://carlyfindlay.com.au/2015/12/13/my-very-own-instagram-husband/) - Have you seen the very funny Instagram Husband video? Adam sent it to me - he loves it and so do I! One of the few reasons Adam and I argue is over taking Instagram photos. I'm a little bossy, you see."Please use my proper camera." "I like this wall, that one is too dirty."
- [International Day of People with Disability is more than tokenism.](https://carlyfindlay.com.au/2015/12/02/international-day-of-people-with-disability-is-more-than-tokenism/) - Today is international Day of People with Disability.Australians will pin a blue and orange badge on their lapel, to show their support for inclusion and accessibility. Many will attend events (mostly organised by people without disabilities) just for the morning tea. I know - people have told me they only stopped by for the sweets.
- [Love doesn't discriminate.](https://carlyfindlay.com.au/2015/11/29/love-doesnt-discriminate/) - When I was asked to write this for Don't Dis My Ability, I had writers block. It came from realising me planning a wedding is just like any other bride to be planning a wedding. Love doesn't discriminate. I will be a bride in March. Although my parents encouraged me to be anything I wanted
- [Hello. Real, not curated.](https://carlyfindlay.com.au/2015/11/22/hello-real-not-curated/) - After my amazing day on Friday (see my Facebook or Instagram for details - and stay tuned for a little wrap here soon), I've not been so well over the weekend. I'm tired, my skin is a little sore on my ribs and I feel sick in the tummy. I've been in bed for a
- [Two year anniversary.](https://carlyfindlay.com.au/2015/11/17/two-year-anniversary/) - Gosh. I'm so busy I've had very little time to write here. Regular writing should commence soon. I've got so many words inside me. Today I wanted to do a quick post - about a two year anniversary. It's two years today since Adam asked if he could be my boyfriend. He's grown so much
- [Falling](https://carlyfindlay.com.au/2015/11/08/falling/) - Last week was a big one and so this past weekend has been spent resting. I had a nasty fall midweek, which has left me in pain for days. I took a tumble while walking out of my manager's office - tripping on a chair leg and smacking my knee and hand into the metal
- [The pitfalls of homogenising disability appearance](https://carlyfindlay.com.au/2015/11/04/the-pitfalls-of-homogenising-disability-appearance/) - I've got a few doppelgängers. They span generations - some are 20, 30 years older than me, and others are toddlers. Genetic similarities thread through strangers across the world, giving us a sense of knowing and belonging, even though we might not know each other.We all bear a strong resemblance because of a severe skin
- [Fleetwood Mac live at Rod Laver Arena, Melbourne.](https://carlyfindlay.com.au/2015/11/03/fleetwood-mac-live-at-rod-laver-arena-melbourne/) - I used to do concert reviews on my blog. I haven't done one in a while. When I got home last night I wrote a short one for Facebook. I wanted to record it properly to look back on. So here it is. Last night I experienced one of the best concerts I've ever been
- [Well-meaning behaviour and disability. I was only trying to help.](https://carlyfindlay.com.au/2015/11/01/well-meaning-behaviour-and-disability-i-was-only-trying-to-help/) - (source) Back on a rainy Saturday evening in August, I was travelling home on a train. I'd just been at Quippings rehearsals, fittingly discussing disability politics, including the behaviours of over niceness and pity thrust upon disabled people. I was looking at social media on my phone, not speaking and not in any need of assistance
- [Unplugged.](https://carlyfindlay.com.au/2015/10/28/unplugged/) - Last month I took a Facebook break. I felt overwhelmed - with online and offline life. I just wanted to escape for a while. I felt suffocated, watched, pounced upon at times, argumentative, lost for and full of words simultaneously, and tired. So tired. (I want to write about activism burnout in depth soon, but
- [Microaggressions. #NoFilter](https://carlyfindlay.com.au/2015/10/25/microaggressions-nofilter/) - The thing about looking different is that people tell you what they really think. Not all of what they say is malicious - it's a case of unthinking behaviour, personal discomfort/projection about someone else looking different or no filter between brain and mouth.These are three conversations I've had recently. Lady at bus stop, pulling disgusted
- [It's less than five months until the wedding!](https://carlyfindlay.com.au/2015/10/22/its-less-than-five-months-until-the-wedding/) - With just under five months to go until the Big Day, wedding planning is in full swing. It certainly helps that I was an event planner for so many years in my day job. I had hoped the wedding stuff would be organised by December, but I think the end of January is more likely.
- [Thirteen things I learnt from Turia Pitt at Business Chicks.](https://carlyfindlay.com.au/2015/10/20/thirteen-things-i-learnt-from-turia-pitt-at-business-chicks/) - Last week I saw Turia Pitt speak at a Business Chicks event. When I got the email from Business Chicks to tell me Turia Pitt was talking at an event, I put off booking a ticket. I wasn't sure if I could afford it, and I'd just started a new job. But she's someone I
- [The Good GP - crucial for patients with rare medical conditions. (Brought to you by The Royal Australian College of General Practitioners.)](https://carlyfindlay.com.au/2015/10/18/the-good-gp-crucial-for-patients-with-rare-medical-conditions-brought-to-you-by-the-royal-australian-college-of-general-practitioners/) - One of the most difficult things about having a rare medical condition is that I feel like a lesson for doctors. I've written previously about how I was involved in medical conferences as a child, and regularly take part in medical exams for dermatology registrars during my hospital appointments as an adult. I've moved from
- [A little vote for a big cause - Kidspot Voices of 2015 Alumni for the Heart and Lung Transplant Trust of Victoria](https://carlyfindlay.com.au/2015/10/16/a-little-vote-for-a-big-cause-kidspot-voices-of-2015-alumni-for-the-heart-and-lung-transplant-trust-of-victoria/) - (Click to vote)See those two beautiful ladies either side of me? They're Rebecca and Camille. They're transplant recipients. Generous organ donors gave them new life. Bec had a double lung transplant in September 2012 and Cam had the same in February 2013. Through the help of the Heart and Lung Transplant Trust (Victoria) Inc (HLTTV),
- [On being unhappy with my body - not feeling I'm the right size for me.](https://carlyfindlay.com.au/2015/10/14/on-being-unhappy-with-my-body-not-feeling-im-the-right-size-for-me/) - I've written about getting on and falling off the exercise wagon a few times now. Before I met Adam I was really enjoying it. I was committed - getting up early to use the elliptical trainer at the gym, and I loved the changes to my body. I made modifications to suit my skin. And
- [What it feels like to go viral.](https://carlyfindlay.com.au/2015/10/11/what-it-feels-like-to-go-viral/) - It has taken me so long to write this post. Almost two years of processing my feelings and drafting my words. Because the impacts of going viral are both temporary and long lasting.I want as many people as possible to see my posts. But I would never want to go viral again. Because going viral
- [The occupational hazards of being a blogger. On snark.](https://carlyfindlay.com.au/2015/10/10/the-occupational-hazards-of-being-a-blogger-on-snark/) - Yesterday I found myself the subject of nastiness on a snark site. It's happened to me a few times, but these words have been the most biting, making me question myself, even though I know none of it is true! Reading this stuff punches you in the guts. It makes you question yourself - your
- [The public gaze - on being invited to be a subject of the Body Bizarre documentary.](https://carlyfindlay.com.au/2015/10/07/the-public-gaze-on-being-invited-to-be-a-subject-of-the-body-bizarre-documentary/) - Last month I wrote some advice you might like to consider when approached by the media to tell your story about your rare medical condition/disability/facial difference. The blog post was received really well - with friends noting down the questions for the next time they're asked to appear in the media. You can read that
- [Eight ways to use Instagram to build a strong chronic illness community.](https://carlyfindlay.com.au/2015/10/04/eight-ways-to-use-instagram-to-build-a-strong-chronic-illness-community/) - I recently wrote about my love for Instagram - sharing advice from Jadah Sellner and showcasing my favourite accounts. I mentioned how much I love using Instagram to connect with others who have Ichthyosis.Instagram is an unlikely platform for forming a strong chronic illness community. I have 'met' lots of amazing people on Insta -
- [Two podcasts I've chatted on recently](https://carlyfindlay.com.au/2015/10/02/two-podcasts-ive-chatted-on-recently/) - You know how I love podcasts. I wrote about them here and here. I only just noticed one of my small screen (and now podcast) queens tweeted my link out. I love Leigh. I listen to podcasts every day. I am addicted. I put them on when I'm working on spreadsheets or drifting off for a
- [Quippings at Melbourne Fringe - We don't want pity, we are empowered.
We are so proud.](https://carlyfindlay.com.au/2015/09/27/quippings-at-melbourne-fringe-we-dont-want-pity-we-are-empowered-we-are-so-proud/) - Although it's a workday, I've got wine flu. Our four-show season of Quippings at Melbourne Fringe Festival ended last night. We celebrated with drinks and dancing. My body is sore from twirling a gymnastic ribbon and my throat is gravely from singing Khe Sanh. But I'm on top of the world. Quippings is a Melbourne
- [If you're wondering where I am...](https://carlyfindlay.com.au/2015/09/23/if-youre-wondering-where-i-am/) - I'm taking some time out. Completely overwhelmed, about many things. See you soon. Thanks to so many of you for checking in on me.
- [A new start, today.](https://carlyfindlay.com.au/2015/09/20/a-new-start-today/) - On Friday I finished up at my day job. I'd been working in that role for eight years, minus about a year and a half when I did two or three other jobs and then returned. I knew it inside out - the processes especially. But in recent months, I felt less connected to the
- [A letter to CEO Susan Wojcicki: on bullying of people with rare medical conditions on YouTube](https://carlyfindlay.com.au/2015/09/17/a-letter-to-ceo-susan-wojcicki-on-bullying-of-people-with-rare-medical-conditions-on-youtube/) - UPDATE: 3 October - the video has been taken down. Victory! Read about that on the South China Morning Post. Dear Susan Wojcicki, CEO YouTube.I am writing to you about cyber bullying on YouTube. You must be so proud of this platform you lead - it is a trove of entertainment and information. But you
- [Lady faves.](https://carlyfindlay.com.au/2015/09/16/lady-faves/) - This post was written for I Support the Sisterhood - Jordy Lucas' project. It's a website showcasing the talents of women doing great things - artists, entrepreneurs, social good makers... They shine! Jordy used to be on Neighbours, playing Summer. Check out her Instagram too. Some writers I've met in real life: Kerri Sackville, Pip
- [What to consider when the media asks you for your story (about life with ichthyosis or facial differences or disabilities).](https://carlyfindlay.com.au/2015/09/13/what-to-consider-when-the-media-asks-you-for-your-story-about-life-with-ichthyosis-or-facial-differences-or-disabilities/) - I receive emails from journalists and media makers asking me to tell my story about life with ichthyosis about once a month now. Most of these are for tabloid media, but some are for public media and well respected publications and programs. I've said yes to a few and no to more. My friends with
- [Rest in peace Megan Barron.](https://carlyfindlay.com.au/2015/09/10/rest-in-peace-megan-barron/) - (Picture via I refuse EB) I am devastated. It makes me so sad and angry that skin conditions can be fatal.I woke up to read my online friend Megan Barron has died. Megan had Epidermolysis Bullosa (EB) - an extremely severe skin condition. Megan was talented - she interned in the disabilities department of the
- [A guest post from a parent who raises awareness of her child's medical condition.](https://carlyfindlay.com.au/2015/09/09/a-guest-post-from-a-parent-who-raises-awareness-of-her-childs-medical-condition/) - When I wrote the article (and then blog post) about parents oversharing about their children's disabilities online, I wasn't sure what reaction I was going to get. For the most part, the response has been positive. So many parents have thanked me for writing it. Adults with disabilities have told me about when their photos,
- [On othering. Dismissing people as being less human than we are.](https://carlyfindlay.com.au/2015/09/06/on-othering-dismissing-people-as-being-less-human-than-we-are/) - This past week, the world was talking after seeing the image of a little Syrian boy washed up on the shore. Heartbreaking. Three year old Aylan Kurdi, his five year old brother Galip and his mother Rehanna drowned in the sea between Syria and Greece. The family was desperate to make a safe life, so
- [Wedding planning.](https://carlyfindlay.com.au/2015/09/06/wedding-planning/) - It's just over six months until our wedding! Six months. I cannot believe how fast the time has gone. When I think forward to our big day, I'm excited that we've got so many of our friends involved in making it special. Right now I've kicked into planning mode. I'm so glad that I've done
- [I sold my blog for a bar of chocolate. Blogging and monetisation.](https://carlyfindlay.com.au/2015/08/30/i-sold-my-blog-for-a-bar-of-chocolate-blogging-and-monetisation/) - Five years ago I sold my blog for a bar of chocolate. I don't enjoy cheap chocolate. Yet I gave up space on my blog to advertise cheap chocolate for $110. I'd sold myself short. As I've furthered myself as a blogger, I regret it. When I was approached by Nuffnang to write about chocolate
- [Helping baby Julius. Social media for social good. Thank you.](https://carlyfindlay.com.au/2015/08/26/helping-baby-julius-social-media-for-social-good-thank-you/) - In May I shared Julius' story. Julius has just turned one and lives with his family in the Philippines. He has Harlequin Ichthyosis. Julius' skin condition was not treated for nine months - and due to the worsening of his Ichthyosis, he's lost his hands and eyesight. He has been treated as an outpatient at
- [When I washed my feet in sparkling water. Knowing the limits Ichthyosis places on me.](https://carlyfindlay.com.au/2015/08/24/when-i-washed-my-feet-in-sparkling-water-knowing-the-limits-ichthyosis-places-on-me/) - No matter how much I say I don't let Ichthyosis stop me, or I can do almost anything despite of it, the reality of Ichthyosis is that it can be limiting. Not just for me but for others too. But it's ok to ask for help, to acknowledge this condition might mean we can't do
- [Six Instagram accounts I love (plus an Instagram tip from me).](https://carlyfindlay.com.au/2015/08/19/six-instagram-accounts-i-love-plus-an-instagram-tip-from-me/) - When I was at Problogger, I saw a speaker called Jadah Sellner who spoke about growing an instagram following. She had some great tips which are easy to implement. Her number one tip was to engage authentically with others. Jadah runs an account called Simple Green Smoothies - she's got 300,000 followers which she and
- [What I wore to Problogger](https://carlyfindlay.com.au/2015/08/17/what-i-wore-to-problogger/) - So, this last weekend I went to the Problogger conference - a conference for bloggers. 700 of us - with about 10% of those male! I was nerding out - in my element learning about blogging, content creation, networking and promotion. It was SO social - I've not seen many of my blogging friends for
- [How working in a department store gave me permission to take control of how others reacted to my appearance.](https://carlyfindlay.com.au/2015/08/12/how-working-in-a-department-store-gave-me-permission-to-take-control-of-how-others-reacted-to-my-appearance/) - When I was growing up, I just wanted to be normal. I wanted to have smooth skin – in any ‘normal’ skin tone other than red. I wanted to have my hair plaited by the girls in my class and be invited to more parties. I hoped that others would stop being too afraid
- [How I achieved my goal after a blog conference (and a cute printable for you!).](https://carlyfindlay.com.au/2015/08/09/how-i-achieved-my-goal-after-a-blog-conference-and-a-cute-printable-for-you/) - This week is #PBEvent - the annual Problogger conference! I am so excited! Blog conferences are SO inspiring. Every session I’ve been to has taught me something, and more often than not, the speakers’ stories have given me the incentive to do more. Write more, develop a product, create an event, be a better person.
- [Travelling with Ichthyosis (and other medical conditions).](https://carlyfindlay.com.au/2015/08/06/travelling-with-ichthyosis-and-other-medical-conditions/) - This post is about travelling with ichthyosis, but I guess it applies to many other medical conditions. I am writing it as part of the Problogger and Virgin Australia competition. I hope it's useful. (It's not sponsored.)I don't have many regrets but one is not travelling earlier. I never saved enough, and always feared it would
- [How to cushion the blows when writing online.](https://carlyfindlay.com.au/2015/08/04/how-to-cushion-the-blows-when-writing-online/) - Writing online is like putting a message in a bottle and sending it to sea. Precious and fragile, our words go on an undetermined journey. We never know who will find them. And we never know whether someone will handle it with the same care that we did writing it. Every so often (fortunately once
- [Embracing labels to shape our identities.](https://carlyfindlay.com.au/2015/08/02/embracing-labels-to-shape-our-identities/) - Labels. They’re a blessing and a curse to live with. Fat. Thin. Beautiful. Ugly. Smart. Stupid. Rich. Poor. Athletic. Lazy. Normal. Different. Disabled. Able bodied.Labels are temporary but can result in our identities and esteem being damaged. We can peel off the labels that others stick on us. Or we can embrace them – let
- [What do you wish for?](https://carlyfindlay.com.au/2015/07/30/what-do-you-wish-for/) - I saw a meme posted in a Facebook group yesterday morning. It said: "A healthy person has a million wishes. A person with a chronic illness only has one."At risk of offending a heap of people, I don't entirely agree. I agree that a chronically ill person wishes to be well, free of illness and
- [Parents blogging about their children with disabilities: it is a fine
line between awareness raising and shaming.](https://carlyfindlay.com.au/2015/07/28/parents-blogging-about-their-children-with-disabilities-it-is-a-fineline-between-awareness-raising-and-shaming/) - Last week I took part in a fantastic Twitter chat around the power of disability stories. The chat was a part of the National Museum of American History, as a celebration of the American Disability Act. Participants were from all corners of the globe – such rich, inclusive and diverse conversation! Questions were asked about
- [Tim McCallum on The Voice Australia. Have a think about why you think someone with a disability inspirational.](https://carlyfindlay.com.au/2015/07/26/tim-mccallum-on-the-voice-australia-have-a-think-about-why-you-think-someone-with-a-disability-inspirational/) - When Jessie J cried upon hearing 34 year old Tim McCallum's performance of Nessun Dorma on The Voice last Tuesday night, I immediately thought of Stella Young's stance on inspiration porn. You know, disabled people applauded for doing ordinary things. Like banking or working.Tim is a brilliant singer, who just happens to be in a
- [Tips for meeting people at blog conferences.](https://carlyfindlay.com.au/2015/07/23/tips-for-meeting-people-at-blog-conferences/) - It’s three weeks until the ProBlogger Event (#PBEvent). I cannot wait. I’ll be in my element, learning about all things blogging and being surrounded by likeminded people, and I’m also glad for the warmth of Queensland. Blogging conferences leave me inspired and drained. It’s exhausting learning, networking and socialising. (And drinking.)I seem to be an
- [Lost for words](https://carlyfindlay.com.au/2015/07/19/lost-for-words/) - It's been about a month since I've felt like writing. I'd written something for Daily Life - it was an interesting and important topic - and that was the last thing that left my heart beating with excitement after the words made sentences, paragraphs and then a story. I've got many ideas. There is never
- [Five ways I manage my Ichthyosis in winter.](https://carlyfindlay.com.au/2015/07/12/five-ways-i-manage-my-ichthyosis-in-winter/) - It's been a bitterly cold winter in Melbourne (and much of the East and South of Australia) this year. Days range from three to 12 degrees Celsius. Winter weather started in May - so we've had a good two months of cold already, with two months to go! Brr! I really like the cold, but
- [Poster children for disability charities.](https://carlyfindlay.com.au/2015/07/09/poster-children-for-disability-charities/) - Lilith Black*, 37, feels forgotten by disability support providers, and does not get that support she was promoting as a poster child for a large Victorian disability organisation. She tells me wistfully that she was treated like a rockstar as a child, but now sometimes has to miss out on seeing her favourite rockstars because
- [Six awesome podcasts hosted by women](https://carlyfindlay.com.au/2015/07/05/six-awesome-podcasts-hosted-by-women/) - I am totally addicted to podcasts. Maybe it's my need to be switched on and want to soak up views of so many others all the time? It's a really effective use of my time - a way to learn without reading. And since my last podcast post, I've found six more podcasts that I
- [My unborn child has inspired me to think about disability and genetics and the value of a life.](https://carlyfindlay.com.au/2015/06/28/my-unborn-child-has-inspired-me-to-think-about-disability-and-genetics-and-the-value-of-a-life/) - I wrote this for the Amazing Babes event at the Emerging Writers Festival. Gosh I was nervous about reading it out. I cried when I read it to Adam (and so did he). And I choked up on stage. And I was scared about publishing it. Because these issues aren't discussed enough. And people fling
- [Fangirl.](https://carlyfindlay.com.au/2015/06/24/fangirl/) - It was almost two years ago that I saw Tavi Gevison speak at the Melbourne Writers Festival. She was 17 at the time, and had equal amounts of wisdom and immaturity. I wrote about it here. Her words about fandom have stuck with me all this time. Being an avid reader and fan, she shared
- [What an editor's rejection letter taught me.](https://carlyfindlay.com.au/2015/06/21/what-an-editors-rejection-letter-taught-me/) - I got a heart-sinking rejection email from an editor this month. I had written a few posts for an entertainment website and was quite proud of my work - showcasing a different angle there. But my writing style had not performed well - traffic wise - and they don’t have the budget to keep me
- [Bloggers with disabilities on No Limits.](https://carlyfindlay.com.au/2015/06/18/bloggers-with-disabilities-on-no-limits/) - You might remember that late last year I was invited back to produce and anchor an episode of No Limits on Channel 31. My dear friend Kath (director of the show) was interested in how blogging allows people with disabilities to have a voice, and she wanted me to discuss that.I asked some other dear
- [Make a stranger feel like they're your friend.](https://carlyfindlay.com.au/2015/06/17/make-a-stranger-feel-like-theyre-your-friend/) - I took a trip on the train to the country this week. The train was not fully booked, and so I sat on the seat opposite to the one I’d been assigned. The lady I was supposed to be sitting next to told me a lot about herself before the train departed. She told me
- [Finding my Hair Romance (Still not Rapunzel, and that's ok.)](https://carlyfindlay.com.au/2015/06/16/finding-my-hair-romance-still-not-rapunzel-and-thats-ok/) - This post was originally written for my friend - blogging and hair superstar - Christina who is The Hair at Hair Romance. I was so excited to be featured on her blog :) It was titled STILL NOT RAPUNZEL AND THAT’S OK. My hospital file is thick. That’s what happens when you live with a rare severe
- [Life hacks for managing chronic illness and disabilities.](https://carlyfindlay.com.au/2015/06/14/life-hacks-for-managing-chronic-illness-and-disabilities/) - I have to be innovative to manage Ichthyosis.My feet have been in excruciating pain. They went through their annual shed - the skin on the soles slowly came away. My brain worked and body moved but it hurt to walk. I'd been bathing them in saltwater and dressing them with antiseptic cream and Tubifast. The
- [Comic-Con: accessibility, appearance diversity, escapism and fittingin. (Giveaway closed.)](https://carlyfindlay.com.au/2015/06/11/comic-con-accessibility-appearance-diversity-escapism-and-fittingin-giveaway-closed/) - I have been given tickets to Oz Comic-Con in exchange for writing this post. I have not been paid to write it, though I’ve done a truckload of research for it - it’s been a fun post to write! I've taken the appearance diversity and disability view - something the promotors had not considered until they read
- [A taxi driver restored my faith.](https://carlyfindlay.com.au/2015/06/08/a-taxi-driver-restored-my-faith/) - Last month I went to a conference in Canberra. I was a speaker there. I caught a taxi to and from the airport. I had a long chat with the taxi driver on my way to the airport. I told him I am a writer. He asked if I've ever written about taxi drivers. Awkwardly I
- [Winter days and a recipe for apple and pawpaw crumble](https://carlyfindlay.com.au/2015/06/08/winter-days-and-a-recipe-for-apple-and-pawpaw-crumble/) - I am loving winter. Apparently it's one of the coldest starts to winter in Melbourne's history - with five degree mornings and days that barely reach the teens. I love rugging up and cooking cosy meals - soups and stews and naughty desserts have been on the menu. This long weekend has been a relaxing
- [Ichthyosis and pride. A bloggy break.](https://carlyfindlay.com.au/2015/05/31/ichthyosis-and-pride-a-bloggy-break/) - Photo by Rick GuidottiAs Ichthyosis Awareness Month came to a close, I thought of the stories shared on my blog and across social media - people have been courageous for starting out. There are so many variations of the condition, and so many different experiences.Many people have not ‘come to terms’ with their condition -
- [Ichthyosis Awareness Month - my story: "I've built a strong sense of resilience - both through having Ichthyosis and as an online writer."](https://carlyfindlay.com.au/2015/05/30/ichthyosis-awareness-month-my-story-ive-built-a-strong-sense-of-resilience-both-through-having-ichthyosis-and-as-an-online-writer/) - It’s the last day in May, and that means Ichthyosis Awareness Month comes to an end. 47 blog posts were published in May - and that’s been a great feat amongst full time work, organising the meet, participating in the Emerging Writers Festival, travel, university lecturing, freelance writing and living life (and there have been
- [Ichthyosis Awareness Month - Robin's story: "If you look around you can meet wonderful people."](https://carlyfindlay.com.au/2015/05/30/ichthyosis-awareness-month-robins-story-if-you-look-around-you-can-meet-wonderful-people/) - Tonight is Robin's story - the last for Ichthyosis Awareness Month. Robin writes of life with Lamellar Ichthyosis. She has three children who are fiercely defensive of her, which makes her so proud. She also mentions the severity of Ichthyosis - last year she had an infection so severe she almost died. Meet Robin."I am forty
- [Ichthyosis Awareness Month - Mary's story: "The relief of finding other people with similar skin is very liberating."](https://carlyfindlay.com.au/2015/05/29/ichthyosis-awareness-month-marys-story-the-relief-of-finding-other-people-with-similar-skin-is-very-liberating/) - I met Mary around two years ago on my Facebook page. Mary has Ichthyosis Vulgaris. But at the time we chatted, I didn't know it. She was friendly, joined in on lots of discussions and offered compassion and the occasional empathy about skin pain. One day, when I was in hospital, she sent me a private
- [Ichthyosis Awareness Month - Atique's story: "If you to start your life over knowing what you know today, what would you change?"](https://carlyfindlay.com.au/2015/05/29/ichthyosis-awareness-month-atiques-story-if-you-to-start-your-life-over-knowing-what-you-know-today-what-would-you-change/) - Atique is 24 years old and from Pakistan and has lamellar ichthyosis. Atique's Ichthyosis has provided inspiration to study medicine - he writes about being a talented student. He hopes to research treatments for Ichthyosis.Meet Atique."If you to start your life over knowing what you know today, what would you change?A few moments after my
- [Ichthyosis Awareness Month - Cora and Ashlynne's story: " At the age of 12, she is not ashamed or embarrassed of her Ichthyosis, but she is truly comfortable in her own skin."](https://carlyfindlay.com.au/2015/05/28/ichthyosis-awareness-month-cora-and-ashlynnes-story-at-the-age-of-12-she-is-not-ashamed-or-embarrassed-of-her-ichthyosis-but-she-is-truly-comfortable-in-her-own-skin/) - I've been following Cora's blog for a while - I admire how she writes about coming to terms with her daughter Ashlynne's Confetti Ichthyosis. Life has been hard for them but they've chosen to celebrate, to work as a team - to dance in the rain, as Cora writes. The connections Cora made has ensured
- [What we learnt at the Australian Ichthyosis meet.](https://carlyfindlay.com.au/2015/05/27/what-we-learnt-at-the-australian-ichthyosis-meet/) - We learnt so much at the Australian Ichthyosis Meet. We learnt from doctors and nurses, but more importantly, from each other. I was struck by how articulate and confident the children were speaking up about what works for them and what they’d like to do next as a part of the Australian Ichthyosis community. I
- [Ichthyosis Awareness Month: Casey and Chaz's story: "We see Chaz as our one in a million and we are so lucky to have him in our life."](https://carlyfindlay.com.au/2015/05/27/ichthyosis-awareness-month-casey-and-chazs-story-we-see-chaz-as-our-one-in-a-million-and-we-are-so-lucky-to-have-him-in-our-life/) - Last year I received an email from a dermatologist asking if he could pass on my blog to new parents of a little baby with Ichthyosis. He wrote: "I am asking firstly if you would be happy for me to direct the family to your blog. Also, your advice in managing Netherton's is likely to
- [Ichthyosis Awareness Month - Annaliese and Jossilynn's story: "Teaching friends, family, and even sometimes doctors about Ichthyosis can be very rewarding, but also very tiring."](https://carlyfindlay.com.au/2015/05/26/ichthyosis-awareness-month-annaliese-and-jossilynns-story-teaching-friends-family-and-even-sometimes-doctors-about-ichthyosis-can-be-very-rewarding-but-also-very-tiring/) - Today Annaliese shares her story of being a mum to Jossilynn - a little girl with Epidermolytic Ichthyosis. I really like how she acknowledges how hard educating people about Ichthyosis is, and that she is in a good position to educate doctors about her daughter's skin. Such an amazing advocate. Annaliese writes that "Ichthyosis is a
- [Ichthyosis Awareness Month - Becky's story: "I realize that being normal is what I am."](https://carlyfindlay.com.au/2015/05/26/ichthyosis-awareness-month-beckys-story-i-realize-that-being-normal-is-what-i-am/) - Tonight Becky tells her story of life with Lamellar Ichthyosis. It took her a long way to come to terms with her condition - and the turning point for her was Camp Discovery. I am so glad she's stopped worrying and has made her health and happiness a priority.Meet Becky."What is it like to live
- [Ichthyosis Awareness Month - an update on Evan. "Different is special."](https://carlyfindlay.com.au/2015/05/25/ichthyosis-awareness-month-an-update-on-evan-different-is-special/) - Since we last caught up with Evan and DeDe, Evan's become a big brother! He is SO doting on baby Vince - the photos of them make my heart melt. Beautiful. I love seeing the progress Evan is making, and also reading DeDe's perceptions of parenting a child with a disability. Evan has Harlequin Ichthyosis and he's
- [Ichthyosis Awareness Month - Julius' story - "Believe that miracles happens when you least expect it."](https://carlyfindlay.com.au/2015/05/24/ichthyosis-awareness-month-julius-story-believe-that-miracles-happens-when-you-least-expect-it/) - Here is Julius' story, a baby born with Harlequin Ichthyosis in the town of Parang, in the province of Maguindanao, in the Philippines. The family traveled to a bigger hospital in the region to get some answers about the condition of their little boy just after he was born, but this did not assist with
- [Ichthyosis Awareness Month - RJ's story: "RJ is a great kid and he deals with enough physically, he should not have to deal with ignorance and rude, unkind people as well."](https://carlyfindlay.com.au/2015/05/24/ichthyosis-awareness-month-rjs-story-rj-is-a-great-kid-and-he-deals-with-enough-physically-he-should-not-have-to-deal-with-ignorance-and-rude-unkind-people-as-well/) - Mother of five, Valerie, shares the story of her 4 year old son RJ. Fiercely protective of her little boys’ happy spirit, Valerie details the effect of daily public ignorance on her family. Valerie also explains how her and her husband had to search for their own diagnostic answers around Netherton’s Syndrome. She writes about
- [Ichthyosis Awareness Month -Callie’s Story: “My skin is on me…I am not my skin”.](https://carlyfindlay.com.au/2015/05/23/ichthyosis-awareness-month-callies-story-my-skin-is-on-mei-am-not-my-skin/) - Callie grew up in a small town in Canada. A blessing in disguise, as she was born with Lamellar Ichthyosis. Everyone knew who she was, there were never any questions regarding her skin. Now a university student, she has ventured out to bigger cities and has to answer the endless questions.A 22 year old girl,
- [Ichthyosis Awareness Month: Anna and Genevieve's story: "But most days are our silver linings."](https://carlyfindlay.com.au/2015/05/23/ichthyosis-awareness-month-anna-and-genevieves-story-but-most-days-are-our-silver-linings/) - Anna is such an amazing mother - I really admire the way she discusses issues about Ichthyosis. She has told me of the judgment she has received about her daughter's skin because people just don't understand Ichthyosis. We've become great friends online. Her daughter Genevieve has Epidermolytic Hyperkeratosis.Meet Anna and Genevieve. "Hello from the wonderful state of Minnesota!
- [Ichthyosis Awareness Month - Catherine and Alfie's story: "The online community have been a fantastic source of information and support to us when we would have been so lost."](https://carlyfindlay.com.au/2015/05/22/ichthyosis-awareness-month-catherine-and-alfies-story-the-online-community-have-been-a-fantastic-source-of-information-and-support-to-us-when-we-would-have-been-so-lost/) - Today Catherine writes about her son Alfie, who turns two years old today! Happy birthday Alfie! He has Bullous Ichthyosis (also known as EHK). They live in the UK. Catherine explains the way Ichthyosis impacts on daily life, and how difficult it can be for people without the condition to understand the extent of it.
- [Ichthyosis Awareness Month - Remembering Thomas. Today he would have
been one year old.](https://carlyfindlay.com.au/2015/05/21/ichthyosis-awareness-month-remembering-thomas-today-he-would-havebeen-one-year-old/) - This is the saddest post I've had to edit and publish. Today is Thomas's birthday. He would be one year old. He passed away from infections resulting from his Ichthyosis (KID Syndrome) in December, aged six and a half months. I wrote about Thomas before I even knew his name, urging people to remember that
- [Ichthyosis Awareness Month - Kelsey's story: "I remember telling my younger sister once that I was part dinosaur."](https://carlyfindlay.com.au/2015/05/20/ichthyosis-awareness-month-kelseys-story-i-remember-telling-my-younger-sister-once-that-i-was-part-dinosaur/) - Today Kelsey tells her story. I love the perspective and humour Lamellar Ichthyosis has given her. And similar to me, she's proved doctors wrong, showing them she can do so much more than they expected of her. Meet Kelsey. "Hi, I am Kelsey and I am fromTexas. I am a junior in college and enjoy drinking Starbucks coffee,
- [Ichthyosis Awareness Month: Daniel's adoption story.](https://carlyfindlay.com.au/2015/05/19/ichthyosis-awareness-month-daniels-adoption-story/) - Little Daniel has Harlequin Ichthyosis. When he was born, his birth mother grieved over giving birth to another child affected by Ichthyosis. Daniel's doctors were doing the best they could to save his life, and to find him a family who could care for him. Nicole and Mark gave Daniel a new chance at life.
- [Ichthyosis Awareness Month - Casey's story: " I love to answer questions, when asked respectfully and with kindness."](https://carlyfindlay.com.au/2015/05/19/ichthyosis-awareness-month-caseys-story-i-love-to-answer-questions-when-asked-respectfully-and-with-kindness/) - This morning, Casey's mum Kimberly sent me a message asking if I wanted to share Casey's story. Of course I wanted to. What a beautiful girl, and what a powerful story. I really admire parents who come forward to say how tiring and 'rage provoking' whispers, stares and pointed fingers can be. A little girl
- [Ichthyosis Awareness Month - Kaleigh's story: "Life is short and I’m not going to spend it letting my condition run my life."](https://carlyfindlay.com.au/2015/05/18/ichthyosis-awareness-month-kaleighs-story-life-is-short-and-im-not-going-to-spend-it-letting-my-condition-run-my-life/) - I first met Kaleigh after I read her article on Yahoo about life with Netherton's Syndrome. She writes so well - I've been following her work ever since. She has a great perspective on life. And such a supportive family. Meet Kaleigh. "If you had told me at age 15 that I’d be as happy and
- [Ichthyosis Awareness Month - Christine's story: "I am still just as ordinary as anyone else."](https://carlyfindlay.com.au/2015/05/18/ichthyosis-awareness-month-christines-story-i-am-still-just-as-ordinary-as-anyone-else/) - Christine was born with Ichthyosis form Erythroderma. She is in her 50s and lives in Canada. Christine has been an incredible supporter of the Ichthyosis Awareness Month blog project - I am so grateful. She not only shares her own story, but some perspectives from her family. Meet Christine. "I don’t know that I can say I
- [Ichthyosis Awareness Month - Bree and Kristy's story: "No matter what, she always has a smile on her face, and when she doesn’t, it doesn’t take much effort to get one out of her. "](https://carlyfindlay.com.au/2015/05/17/ichthyosis-awareness-month-bree-and-kristys-story-no-matter-what-she-always-has-a-smile-on-her-face-and-when-she-doesnt-it-doesnt-take-much-effort-to-get-one-out-of-her/) - I met Bree and her mum Kristy at the Australian Ichthyosis Meet. She's adorable. One of my highlights was seeing Adam getting Bree to smile by making funny faces. So cute!Kristy writes of the challenges of having a baby with Ichthyosis - the condition can cause many other complications. Bree has not yet received an
- [Ichthyosis Awareness Month - Denice’s Story:“It’s taught me to love like I want to be loved, to treat others like I want to be treated, to have an open mind on all accounts”.](https://carlyfindlay.com.au/2015/05/17/ichthyosis-awareness-month-denices-storyits-taught-me-to-love-like-i-want-to-be-loved-to-treat-others-like-i-want-to-be-treated-to-have-an-open-mind-on-all-accounts/) - Denice has Lamellar Ichthyosis. She writes about teaching her children that being comfortable in our skin, both physically and emotionally is the most important aspect of our lives. She talks of being at an age that she has learned to love herself and doesn’t care how other people perceive her at first glance. I think
- [Ichthyosis Awareness Month: Silje and Marion's story: "I thought I had prepared for the possibility to get a “different” child."](https://carlyfindlay.com.au/2015/05/16/ichthyosis-awareness-month-silje-and-marions-story-i-thought-i-had-prepared-for-the-possibility-to-get-a-different-child/) - Silje is a young mum from Norway. Her beautiful baby Marion was born with Epidermolytic ichthyosis. She writes of the unpreparedness and worry of having a baby with a visible difference and disability, and also the way Marion has changed her life for the better. Meet Silje and Marion. "My name is Silje, I'm 26 years old and live in
- [Ichthyosis Awareness Month - Brooklyn's story - "Brooklyn isn't the only one with Ichthyosis. We all get covered in lotion and flakes and we wouldn't change it for normal any day."](https://carlyfindlay.com.au/2015/05/16/ichthyosis-awareness-month-brooklyns-story-brooklyn-isnt-the-only-one-with-ichthyosis-we-all-get-covered-in-lotion-and-flakes-and-we-wouldnt-change-it-for-normal-any-day/) - This post is from Brooklyn's mum - I really like the deeply personal reflection. She writes about how disability - including Ichthyosis - has changed her way of thinking. She reveals how her life has changed for the better because of Brooklyn. She is very candid in her views about disability before Brooklyn was born -
- [Ichthyosis Awareness Month - Nicolle's story: "I'm looking nowhere near the age of 78 as the doctor predicted!"](https://carlyfindlay.com.au/2015/05/15/ichthyosis-awareness-month-nicolles-story-im-looking-nowhere-near-the-age-of-78-as-the-doctor-predicted/) - I came across Nicolle online when I was featured on the Make it Look Easy Facebook page. She commented on my photo, saying she also has Ichthyosis. Nicolle has Ichthyosis Vulgaris and lives in South Australia. Meet Nicolle. "HI I am Nicolle and I was born with Icthyosis Vulgaris or common Icthyosis.From what I understand my skin has a
- [Ichthyosis Awareness Month - Denise's story: "I got tired of wanting to hide."](https://carlyfindlay.com.au/2015/05/14/ichthyosis-awareness-month-denises-story-i-got-tired-of-wanting-to-hide/) - This post is definitely up there with one of my favourites! Denise writes about how she got tired of hiding her skin and decided to have pedicures and wear sandals. She also writes of the importance of letting go of the self consciousness, because it's freeing. She's let go of her personal hangups, and doesn't
- [Ichthyosis Awareness Month - 9 year old Aurora's story of being discriminated against.](https://carlyfindlay.com.au/2015/05/14/ichthyosis-awareness-month-9-year-old-auroras-story-of-being-discriminated-against/) - My little friend Aurora was recently discriminated against when she went to get a pedicure at nail salon. The nail technicians would not give her a pedicure and pointed, laughed and whispered about her. The nail salon owners have denied this ever happened, and have put up a video of the incident without Aurora's or
- [Ichthyosis Awareness Month - Andrea's story: "I'm like a fairy scattering around stardust of my skin all the time."](https://carlyfindlay.com.au/2015/05/13/ichthyosis-awareness-month-andreas-story-im-like-a-fairy-scattering-around-stardust-of-my-skin-all-the-time/) - Andrea's story made me smile. She sees the beauty and humour in an aspect of Ichthyosis that can be very difficult - shedding skin. I like her fairy and vacuum references. And like Andrea, I can't do anything before I've had a shower. She has Ichthyosis form Erythroderma. Andrea writes of how she knows no different -
- [Ichthyosis Awareness Month - Gene's story: "It's my job to spread the word of Ichthyosis because a doctor can't teach or treat what he or she has not learned."](https://carlyfindlay.com.au/2015/05/13/ichthyosis-awareness-month-genes-story-its-my-job-to-spread-the-word-of-ichthyosis-because-a-doctor-cant-teach-or-treat-what-he-or-she-has-not-learned/) - This post contains a description of graphic violence. Helplines are a the bottom of this post. Gene has overcome family tragedy, lack of information and delayed diagnosis to now be a proud spokesperson for Ichthyosis awareness. Embracing the support of the online community, Gene is providing an excellent example to his children who also have Ichthyosis
- [Ichthyosis Awareness Month - Rebecca, Aidan and Caleb's story: "The XLI doesn’t really bother me but people do make fun of it sometimes."](https://carlyfindlay.com.au/2015/05/12/ichthyosis-awareness-month-rebecca-aidan-and-calebs-story-the-xli-doesnt-really-bother-me-but-people-do-make-fun-of-it-sometimes/) - Even though Rebecca grew up with a brother who has X-linked Ichthyosis (XLI), she was still unaware of the effect it would have on two of her sons, Aidan and Caleb. Rebecca shares her sons’ story about the daily and long-term effects of their XLI in both the physical and emotional forms. The family is
- [All about the Australian Ichthyosis Meet. So much friendship, advice and love.](https://carlyfindlay.com.au/2015/05/11/all-about-the-australian-ichthyosis-meet-so-much-friendship-advice-and-love/) - Saturday 9 May was the day of the first Australian Ichthyosis Meet at the Melbourne Zoo. I have been planning it since September 2014 - and it was so wonderful to see it come into fruition after so much hard work. (The meet was open to the whole Australian Ichthyosis community - though it booked
- [Ichthyosis Awareness Month - Carlie's story: "we could tell very early on that she was a fighter".](https://carlyfindlay.com.au/2015/05/11/ichthyosis-awareness-month-carlies-story-we-could-tell-very-early-on-that-she-was-a-fighter/) - Eleven year old Carlie has Netherton's Syndrome like me. This type of Ichthyosis has caused some health complications for her - including feeding and mobility difficulties and osteoporosis. She's doing well now, competing in beauty pageants. Carlie's mother Betty tells her story tonight. Meet Carlie. "Carlie was born a month early on December 14th, 2004. The doctor
- [Ichthyosis Awareness Month - Lea's story: "A complete stranger on the street, though, is sure that he/she has the answer I’ve been looking for all my life!"](https://carlyfindlay.com.au/2015/05/10/ichthyosis-awareness-month-leas-story-a-complete-stranger-on-the-street-though-is-sure-that-heshe-has-the-answer-ive-been-looking-for-all-my-life/) - Today Lea addresses some of the assumptions made about people who look different. There's a constant struggle among us to educate the curious, to ignore the stupid and to do it all politely. There's an expectation that we will be polite, and if we are anything but, we are bitter, rude or ungrateful for advice.
- [Ichthyosis Awareness Month - The Girl Behind the Face: "Life’s rarely
been split between either laughter or tears; both have existed
simultaneously."](https://carlyfindlay.com.au/2015/05/09/ichthyosis-awareness-month-the-girl-behind-the-face-lifes-rarelybeen-split-between-either-laughter-or-tears-both-have-existedsimultaneously/) - You might remember Mui's story from 2013. She has Harlequin Ichthyosis. Her parents Rog and Tina have written a book called 'The Girl Behind the Face' - it's about their incredible journey from adopting Mui to life today. Mui's mother and father have contributed to Ichthyosis Awareness Month with a piece that highlights the prejudice
- [Ichthyosis Awareness Month - Kelly's story: "I am an Ichthyosis fighter and survivor."](https://carlyfindlay.com.au/2015/05/08/ichthyosis-awareness-month-kellys-story-i-am-an-ichthyosis-fighter-and-survivor/) - I admire this beautiful young woman's outlook so much! Kelly has Lamellar Ichthyosis and Ichthyosis Vulgaris. She's 19 (it's her birthday TODAY!) and she has an enormous level of self belief and courage to forgive those who have not treated her well. It saddens me that people will use God against her, especially when she has
- [Ichthyosis Awareness Month: Kylie and Lincoln’s Story. “The child he is, and the parents we have become, is in part, because of what we have overcome and discovered in our journey as a family”](https://carlyfindlay.com.au/2015/05/08/ichthyosis-awareness-month-kylie-and-lincolns-story-the-child-he-is-and-the-parents-we-have-become-is-in-part-because-of-what-we-have-overcome-and-discovered-in-our-journey-as-a/) - Kylie, Lincoln’s Mum, shares what it was like in the very beginning. Learning that her son was born with X-linked Ichthyosis, the struggles they had in hospital and how they have come to deal with it in their everyday lives.Kylie hopes that by sharing their story that they will be able help other people and
- [Ichthyosis Awareness Month - Gina's return: "With these challenges come with some of the most incredible experiences".](https://carlyfindlay.com.au/2015/05/07/ichthyosis-awareness-month-ginas-return-with-these-challenges-come-with-some-of-the-most-incredible-experiences/) - I love showing the progress of previous Ichthyosis Awareness Month contributors. Today Gina shares her story again - she first featured in 2013. Gina has Lamellar Ichthyosis. I really like how she can see the positives that Ichthyosis has given her - the way it's taught her to socialise, embrace diversity and identify with others
- [Ichthyosis Awareness Month - Merritt's story: "It’s nice to get compliments, but it’s also surreal. I mean where do I fit in?"](https://carlyfindlay.com.au/2015/05/07/ichthyosis-awareness-month-merritts-story-its-nice-to-get-compliments-but-its-also-surreal-i-mean-where-do-i-fit-in/) - Merritt is someone I look up to. She's a bit older than me, and she's trailblazed treatments for her beauty regime, and mentored others younger than her. One thing I am in awe about is that she's worked as a Disney animator! So cool :)Merritt writes about her path to finding a regime that makes
- [Ichthyosis Awareness Month - say hello to Addison and Joella again!](https://carlyfindlay.com.au/2015/05/06/ichthyosis-awareness-month-say-hello-to-addison-and-joella-again/) - Back in 2013, I shared Addison and Joella's story - as told by their grandmother Kitty. Today, their mum, Jessica, provides an update. The girls are grown up! It's nice to hear from a mother's perspective. The girls and their father have Erythrokeratoderma Variablis. I love how proud Jessica is of her family.Meet Jessica and
- [Ichthyosis Awareness Month - Rebekah's story: "I've experienced people who think I'm stupid because of my skin."](https://carlyfindlay.com.au/2015/05/05/ichthyosis-awareness-month-rebekahs-story-ive-experienced-people-who-think-im-stupid-because-of-my-skin/) - Rebekah is coming across the ditch from New Zealand for the Australian Ichthyosis Meet this Saturday. I am really excited that she's making the trip, and that I can meet someone around my age with the condition. I've known her online for around three years - and see she leads a very active life. She
- [Ichthyosis Awareness Month - Anna and Barbara's story: "Harlequin ichthyosis has changed all my life, my values and outlooks."](https://carlyfindlay.com.au/2015/05/04/ichthyosis-awareness-month-anna-and-barbaras-story-harlequin-ichthyosis-has-changed-all-my-life-my-values-and-outlooks/) - I first saw this darling on Instagram - Anna had commented on Blessed By Brenna's photos, and I clicked through to see photos of baby Barbara. Anna told me she'd been reading my blog, which I was excited to know, and I asked her if she'd like to share her story in May. I'm so
- [Ichthyosis Awareness Month - Ciara and Eleanor's stories: "People are so shocked that someone so different can do something so amazing."](https://carlyfindlay.com.au/2015/05/03/ichthyosis-awareness-month-ciara-and-eleanors-stories-people-are-so-shocked-that-someone-so-different-can-do-something-so-amazing/) - Today a mother and daughter share their stories for Ichthyosis Awareness Month. Ciara and Eleanor live in WesternAustralia and are coming to the Australian Ichthyosis Meet this Saturday - I can't wait to meet them! Ciara is 14 and she has Ichthyosis form Erythroderma. Ciara has such a positive outlook - and I love how she's become confident
- [Ichthyosis Awareness Month - Steph's Story: "Your life is what you make it."](https://carlyfindlay.com.au/2015/05/02/ichthyosis-awareness-month-stephs-story-your-life-is-what-you-make-it/) - I am so excited to share Stephanie's story for Ichthyosis Awareness Month 2015! I've been her online friend for years, and it's been a delight following her journey. She's given hope to so many patients and parents. Steph's got Harlequin Ichthyosis - the most severe form. I first wrote about her when she gave birth
- [Ichthyosis Awareness Month - Alexander and Maria's stories: "I try to ignore these comments and stares but it makes me sad, and I feel so different."](https://carlyfindlay.com.au/2015/05/01/ichthyosis-awareness-month-alexander-and-marias-stories-i-try-to-ignore-these-comments-and-stares-but-it-makes-me-sad-and-i-feel-so-different/) - A mother and son share their stories today. They're coming to the Australian Ichthyosis Meet on Saturday - and both Alexander and Maria are looking forward to making new connections. Their stories reiterate the need for connections with other patients and families affected by the condition, and for simple, accessible information about the condition. I am so glad
- [Introducing Ichthyosis Awareness Month 2015. "Create the things you wish existed."](https://carlyfindlay.com.au/2015/04/30/introducing-ichthyosis-awareness-month-2015-create-the-things-you-wish-existed/) - Today is the start of Ichthyosis Awareness Month - where I will be sharing stories by patients and parents affected by the rare severe skin condition Ichthyosis. There will be one or two stories each day. You’ll get to know that the range of Ichthyosis types is extensive and the symptoms, appearance and treatment of
- [MEDIA RELEASE: Australia's first national Ichthyosis meet. (Peer support meet comes to life at Melbourne Zoo in May)](https://carlyfindlay.com.au/2015/04/29/media-release-australias-first-national-ichthyosis-meet-peer-support-meet-comes-to-life-at-melbourne-zoo-in-may/) - MEDIA RELEASE30 April 2015Peer support meet comes to life at Melbourne Zoo in MayAppearance activist Carly Findlay, in partnership with the Genetic Support Network of Victoria (GSNV), will host the first official Australian Ichthyosis Meet in Melbourne on Saturday 9 May 2015, as part of Ichthyosis Awareness Month. This event gives adults, children and families
- [The wind beneath my wings](https://carlyfindlay.com.au/2015/04/26/the-wind-beneath-my-wings/) - One Saturday night earlier this month, Adam and I went to his parents’ house for dinner. My mum was there too. Our mothers are around the same age and have similar music tastes - Creedence Clearwater Revival, Lionel Ritchie, Janis Joplin, Joni Mitchell. His mum played Bette Midler’s Wind Beneath My Wings - which I
- [One plus four equals life - sickness, rest, donations and a party.](https://carlyfindlay.com.au/2015/04/24/one-plus-four-equals-life-sickness-rest-donations-and-a-party/) - Hello! Happy Saturday. I've been awake since 3.30 am as I drove Adam into the ANZAC Day service - and later I'll go with him to check out the poppies in the city. It's time for one plus four equals life again - it's a great way to reflect on the week. I've been unwell
- [Three tips for exploring museums and art galleries.](https://carlyfindlay.com.au/2015/04/23/three-tips-for-exploring-museums-and-art-galleries/) - I went to some amazing museums and galleries in Milan and Paris, and a few in the UK too. The history they hold is breath-taking. I loved learning about how people lived, and seeing iconic artwork. It's also interesting seeing how others take it all in - lingering looking, or quick photo snaps to look
- [The standard we walk past is the standard we accept. On attitudes and allies towards disability.](https://carlyfindlay.com.au/2015/04/21/the-standard-we-walk-past-is-the-standard-we-accept-on-attitudes-and-allies-towards-disability/) - This past month I've become involved in a number of heated online discussions around disability, equality and ableism. The conversations were around the use of accessible toilets by people without disabilities and the ableism shown towards a prominent disabled Australian by a media personality on a TV program. I conversed (and face-palmed) with people with
- [Coming up: Ichthyosis Awareness Month 2015](https://carlyfindlay.com.au/2015/04/19/coming-up-ichthyosis-awareness-month-2015/) - I have spent the weekend editing and scheduling stories for Ichthyosis Awareness Month 2015 - it begins next week! I've already received a heap of stories to share. The whole month of May will be dedicated to raising awareness about the rare, severe skin condition Ichthyosis on this blog. It's such a privilege to have
- [One plus four equals life. Midweek travel and media.](https://carlyfindlay.com.au/2015/04/17/one-plus-four-equals-life-midweek-travel-and-media/) - It's Saturday! And I'm doing Pip's One plus four = life again. This is SO going to be a regular thing! I've been waiting for Saturday to roll around again because t's been such a busy week, and I've been sore. And there's also so much to do for Ichthyosis Awareness Month (IAM) and the
- [Travel tales: Degas House, New Orleans](https://carlyfindlay.com.au/2015/04/16/travel-tales-degas-house-new-orleans/) - It’s just over a year ago since I was in New Orleans. Gosh time has flown! I want to blog more about my trip – let’s hope I can remember the details! I saw so much.I went on a guided bus tour in New Orleans – it changed my perspective of the city. I loved
- [Appearance Diversity: Melissa's story. "Living my life in a somewhat public way allows others access to a person (me!) who may just look similar to them."](https://carlyfindlay.com.au/2015/04/14/appearance-diversity-melissas-story-living-my-life-in-a-somewhat-public-way-allows-others-access-to-a-person-me-who-may-just-look-similar-to-them/) - Melissa from Suger Coat It is a blogger I've been following since I started this blog, maybe even longer. I've followed her fashions and blogging tips and candid posts about body image and confidence. I really admire her writing and style. And I love her attitude and commitment to appearance diversity. We've met a few times
- [My story on The Mirror and Huffington Post Italy.](https://carlyfindlay.com.au/2015/04/13/my-story-on-the-mirror-and-huffington-post-italy/) - The Reddit story keeps on giving. Over the last two days, the story about how I defended myself on Reddit has resurfaced. I've been on The UK Mirror and Irish Mirror websites, and also the Huffington Post in Italy. I'm pleased with how my story has been represented. And I especially like the poll at
- [Connecting with likeminded people.](https://carlyfindlay.com.au/2015/04/12/connecting-with-likeminded-people/) - A few weeks ago, I had to take a break from public social media. It just wasn’t fun for me. There wasn’t anything particularly nasty happening - other than the night where I copped a lot of criticism for a project I am working on and I felt very upset - but I just found
- [One plus four equals life.](https://carlyfindlay.com.au/2015/04/10/one-plus-four-equals-life/) - I've been wanting to do a regular weekend post for a while. And I think I can commit to this! Pip has started this photo challenge called One + Four = Life. She explains: "The idea is that each week you choose four images to sum up the week, and you publish them on your
- [Identity crisis.](https://carlyfindlay.com.au/2015/04/08/identity-crisis/) - I've got an identity crisis - a career crisis to be exact. I came home and cooked dinner a few weeks ago and thought, is this all there is? And I didn't mean what was on my plate. I mean, I know I have SO much good going on in my life, and I am
- [How to write sponsored + gifted blog and social media posts with
integrity.](https://carlyfindlay.com.au/2015/04/06/how-to-write-sponsored-gifted-blog-and-social-media-posts-withintegrity/) - I am a blogger and a blog reader. I've been doing both for a long time. One of the trickiest things about writing and reading blogs, and following bloggers on social media, is sponsored content, and how to create it with integrity.I think it’s important to discuss this topic - but it can be difficult
- [Melbourne International Comedy Festival 2015 - Hannah Gadsby, Barnie Duncan and Emma J Hawkins](https://carlyfindlay.com.au/2015/04/04/melbourne-international-comedy-festival-2015-hannah-gadsby-barnie-duncan-and-emma-j-hawkins/) - Disclaimer: I was given free tickets to see Calypso Nights. I paid to see Hannah Gadsby and Emma J Hawkins. Actually, Adam paid for tickets to Emma's show, but I bought him dinner. All opinions are my own.The Melbourne International Comedy Festival is one of my most favourite times of the year. Melbourne is just
- [Things to do on the Easter long weekend.](https://carlyfindlay.com.au/2015/04/02/things-to-do-on-the-easter-long-weekend/) - The Easter long weekend has begun! I am incredibly excited about four days of doing very little – I’ll catch a couple of comedy shows, declutter, write, and watch some Netflix (so excited it’s arrived in Australia! My fave section of Netflix is the indie films).What are you going to do? I have some suggestions
- [10 pieces of advice for moving in with your partner](https://carlyfindlay.com.au/2015/03/31/10-pieces-of-advice-for-moving-in-with-your-partner/) - Adam and I had lunch with a couple of our friends on the March long weekend. They are adorably in love and will be moving in together soon. One friend, like me, has lived alone for a while. She asked us if there's any advice we'd have for moving in with her partner. And we
- [Why I discourage parents from sharing photos of their very sick children online.](https://carlyfindlay.com.au/2015/03/29/why-i-discourage-parents-from-sharing-photos-of-their-very-sick-children-online/) - I am very passionate about online safety and anti-bullying, especially when it comes to people who look different. One of the reasons I held off sharing a photo of me for so long during my early years of blogging (from 2001) was because of the fear of how it might be misused. Ridiculed. Ogled. Used
- [Holiday snaps - one year since departure. Doing nothing.](https://carlyfindlay.com.au/2015/03/27/holiday-snaps-one-year-since-departure-doing-nothing/) - For many years, my mum seemed annoyed when I sat around doing nothing. Now she's telling me to sit and do nothing. So I am. Listen to your mother. Doing nothing is wonderful.It's a year this weekend since I went overseas. Gosh that time has flown. In the spirit of doing nothing, I finally transferred
- [9 ways to make your blog more accessible for people with disabilities.](https://carlyfindlay.com.au/2015/03/26/9-ways-to-make-your-blog-more-accessible-for-people-with-disabilities/) - I know that many of my readers have disabilities, or are parents, support workers or staff within the disability community. And disabilities come in many forms – physical, mental, cognitive, temporary, permanent, hidden and visible. And one in five Australians have a disability. So I want to ensure my blog is accessible for many readers
- [Our engagement story for our one year engagement anniversary.](https://carlyfindlay.com.au/2015/03/24/our-engagement-story-for-our-one-year-engagement-anniversary/) - It’s a year today since Adam and I became engaged! I can’t believe it - a year! What a year it’s been.This man is the most amazing, caring, gentle affectionate and funny man I could have hoped for. Last week I said to him that I think, if it’s possible, I’ve fallen even more in
- [#AppearanceDiversity: Karen Crespo - the first amputee missing four limbs to feature in New York Fashion Week. "Role models, not runway models."](https://carlyfindlay.com.au/2015/03/22/appearancediversity-karen-crespo-the-first-amputee-missing-four-limbs-to-feature-in-new-york-fashion-week-role-models-not-runway-models/) - I first came across Karen Crespo's awesomeness on A Mighty Girl in September 2014. I contacted her to tell her how much I admired her, and we becomes Facebook friends. When Karen sent me this post through last month, I googled her to find some relevant links, and she happened to be on A Mighty
- [The time Mat Fraser from American Horror Story slapped my arse.](https://carlyfindlay.com.au/2015/03/19/the-time-mat-fraser-from-american-horror-story-slapped-my-arse/) - Add captionOn Wednesday some friends and I saw The Freak and The Showgirl at the Melba Spiegeltent. It was fabulous disability-burlesque. Wow. I don't think I was quite prepared for the level of nudity and barrier pushing. But it was highly enjoyable. The Freak and the Showgirl stars Mat Fraser (from American Horror Story) and his wife Julie Atlas
- [The most important thing I have learnt since my first blog post post.](https://carlyfindlay.com.au/2015/03/17/the-most-important-thing-i-have-learnt-since-my-first-blog-post-post/) - A blogging agency asked the question: show us your first blog post, and what have you learnt since then? Such a great question!This was my first post. Since that post, I've learnt it's not about how many people visit my blog a day, but the difference I can make to just one person through sharing
- [My story of being catfished.](https://carlyfindlay.com.au/2015/03/15/my-story-of-being-catfished/) - Adam and I like to watch Catfish on the laptop before we sleep. It’s our guilty pleasure. We ooh and ahh over the reveals, exclaiming "she didn’t!" a lot! We have sometimes googled what's happened to the pair if the episode was particularly juicy.Most episodes involve a vulnerable person wondering whether the person they've fallen
- [Health blogging, honesty and authenticity.](https://carlyfindlay.com.au/2015/03/11/health-blogging-honesty-and-authenticity/) - The impostor syndrome haunts me. "Is this my life? Am I really writing and speaking about my passions?", I sometimes ask. Am I qualified? Am I nice enough and a good role model at all times? I keep thinking I'll get caught out. Not that I think have anything to get caught out for, but
- [Cheese making.](https://carlyfindlay.com.au/2015/03/10/cheese-making/) - It's no secret I love cheese! And I am so lucky that Adam loves it too! I can't imagine marrying a man who didn't love to sit on the couch and eat three different cheeses on a Friday night.I bought him a cheese kit for our first anniversary last October. The kit includes a recipe
- [I don't want to parent your child. It's up to you to teach your children manners, kindness and compassion.](https://carlyfindlay.com.au/2015/03/08/i-dont-want-to-parent-your-child-its-up-to-you-to-teach-your-children-manners-kindness-and-compassion/) - This post was inspired by my friend Carly who writes at Smaggle. She wrote something awesome titled "Stop allowing your child to be an asshole".Carly wrote: "...it is inexcusable to allow a child to treat other people badly. Teaching a child to be disrespectful is a habit that can’t be broken."They say it takes a village
- [Encountering plagiarism of my own work](https://carlyfindlay.com.au/2015/03/05/encountering-plagiarism-of-my-own-work/) - I googled an article I'd written (to reference it for something else) and found my work plagiarised. A disability organisation plagiarised my article. This is the second disability organisation in two weeks to steal that article (it was the article about disability and fashion) - and the third time a disability organisation has taken my
- [On blog readers meeting bloggers.](https://carlyfindlay.com.au/2015/03/03/on-blog-readers-meeting-bloggers/) - Every time my readers introduce themselves to me, I walk away with a huge grin which stays for a while. They are always so nice. I love it! The excitement of meeting readers is still a novelty. I remember the first time it happened, in 2010, as I was crossing the road. So. Exciting.On the
- [My writing routine in pictures](https://carlyfindlay.com.au/2015/03/01/my-writing-routine-in-pictures/) - I did a fun thing for the Digital Writer's Festival - I was involved in the Extraordinary Routines event over the weekend. I shared my writing routine though photos on Instagram. While I have often talked about how I write, I thought I'd share the photos of my routine here too!1) Reading. The first thing
- [A message to parents on Rare Disease Day.](https://carlyfindlay.com.au/2015/02/27/a-message-to-parents-on-rare-disease-day/) - This post is for Rare Disease Day - 28 February each year.From the website:"The Rare Disease Day 2015 theme Living with a Rare Disease pays tribute to the millions and millions of parents, siblings, grandparents, spouses, aunts, uncles, cousins, and friends whose daily lives are impacted and who are living day-by-day, hand-in-hand with rare disease patients."This
- [Diversity and inclusion in Eurovision](https://carlyfindlay.com.au/2015/02/26/diversity-and-inclusion-in-eurovision/) - My friend Jason who blogs at Don't Boil the Sauce is a Eurovision fanatic. He has a brilliant series called Chow Down to Eurovision - where he shares recipes from the competing countries in the Eurovision Song Contest. When I saw him on Sunday, he was nursing a brand new tattoo - the Eurovision logo
- [Maya is a seven year old who is excited about the Australian Ichthyosis Meet. "I could do with some more friends like my sister."](https://carlyfindlay.com.au/2015/02/24/maya-is-a-seven-year-old-who-is-excited-about-the-australian-ichthyosis-meet-i-could-do-with-some-more-friends-like-my-sister/) - The Australian Ichthyosis Meet is now at capacity - with 71 patients and family members registered. Sponsors have come on board (I will announce those soon), and many people have donated money - I am so grateful for everyone’s support. Thank you! I am also excited learning about who is attending the event, and have
- [Appearance Diversity: Jess's story. "People still stop on the street to stare at me, and to make comments about my physique."](https://carlyfindlay.com.au/2015/02/22/appearance-diversity-jesss-story-people-still-stop-on-the-street-to-stare-at-me-and-to-make-comments-about-my-physique/) - I used to mentor this amazing young woman at the hospital. Jess is one of the smartest, caring people I've met. She is an incredible writer and I am so glad she's shared her appearance diversity story today. Jess blogs at Kisses from the Fight - you have to go read more of her writing. I
- [Educating doctors about patients' disabilities creates greater compassion.](https://carlyfindlay.com.au/2015/02/19/educating-doctors-about-patients-disabilities-creates-greater-compassion/) - Over the Christmas holidays, I introduced myself as an adult to the dermatologist who gave me a pretty dismal prognosis as a baby. He pretended not to remember me until he told me I always had blocked ears.I think he was surprised to see me. I told him some of my achievements including how I
- [Why I post photos of my every day style](https://carlyfindlay.com.au/2015/02/17/why-i-post-photos-of-my-every-day-style/) - I’ve been making a big effort to take photos of what I wear these past six months or so. Usually the photos are snapped on the run. Adam takes a couple of photos of me and he’s done, but if a girlfriend takes the photos, she’ll take quite a few (a recent lunchtime photoshoot saw
- [Accessible fashion means showcasing disability on the catwalk AND providing disability access and awareness in stores.](https://carlyfindlay.com.au/2015/02/15/accessible-fashion-means-showcasing-disability-on-the-catwalk-and-providing-disability-access-and-awareness-in-stores/) - Last week, 30 year old American Horror Story actor Jamie Brewer walked the catwalk at New York Fashion Week. Jamie is the first model with Down Syndrome to feature in NYFW. As Daily Life reported, Jamie said she hoped to show other young women that they can do anything in life. Just look at her
- [Valentines Day. Contentment.](https://carlyfindlay.com.au/2015/02/14/valentines-day-contentment/) - I marvel at the compassion my love has for me. He never complains about how needy I must seem, and is a beautiful companion - nursing me when I am sore. He lets me sleep the pain off, and cooks dinner when I need to elevate my legs. He doesn’t complain when my clothes make
- [Ichthyosis awareness: everyone’s an expert - Tara’s story. "I don't think anyone has any idea unless you live it."](https://carlyfindlay.com.au/2015/02/12/ichthyosis-awareness-everyones-an-expert-taras-story-i-dont-think-anyone-has-any-idea-unless-you-live-it/) - As mentioned last week, it seems that when you are a writer or have a rare condition/different appearance, everyone’s an expert - strangers force their opinions and ‘remedies’ onto you. I’ve been chatting online to a wonderful Canadian woman called Tara for the past three years or so - her son Myles has Lamellar Ichthyosis.
- [Six+ podcasts I love.](https://carlyfindlay.com.au/2015/02/10/six-podcasts-i-love/) - I’ve been listening to podcasts for years. Maybe since 2005? I love them. I listen while I am writing, before sleep, and sometimes if I am doing a repetitive task like spreadsheets or transposing minutes. I learn so much, and hear about a lot of interesting people doing interesting things. (Also, I'm sitting in a
- [This is the lucky country. So why does my friend earn $30 on a good day and have to find $16,000 to fund her wheelchair?](https://carlyfindlay.com.au/2015/02/10/this-is-the-lucky-country-so-why-does-my-friend-earn-30-on-a-good-day-and-have-to-find-16000-to-fund-her-wheelchair/) - This is the lucky country.My friend Felice likes rock music - that photo was taken at the Motley Crue concert. She's also a fan of Metallica, Henry Rollins and Morrissey. She loves eating great vegan food, dancing, being a groupie, 80s movies, and the very attractive Australian actor Simon Baker.Felice works eight hour days, six days a
- [My interview for Margie Warrell's Raw Courage TV](https://carlyfindlay.com.au/2015/02/09/my-interview-for-margie-warrells-raw-courage-tv/) - When I got back from overseas last year, I did an interview with Australian TV presenter Margie Warrell for her Raw Courage TV series. I am really excited to be interviewed by Margie because she's so established. And she's also just interviewed one of my mentors, Layne Beachley. Check out her YouTube page to see them.The
- [Brunch with my blog readers.](https://carlyfindlay.com.au/2015/02/08/brunch-with-my-blog-readers/) - It gives me such a buzz when people tell me they read my blog, even more of a buzz when people say they like it! (Last week at the gallery a reader said "I don't want to ruin your day but I LOVE YOUR BLOG" and gave me a hug. Could not stop giggling. So
- [Everyone's an expert. More unsolicited advice.](https://carlyfindlay.com.au/2015/02/05/everyones-an-expert-more-unsolicited-advice/) - (source)Being an online writer attracts opinions from everyone. So does having a visibly different appearance and rare condition! As I get published more widely, I have come to realise that this occupation and this condition attract unsolicited advice and opinions and, ironically, give me a tougher skin. This unsolicited advice is just another form of
- [Melbourne's got culture. Strictly Ballroom, Thriller Live, Quippings,
Jean Paul Gaultier.](https://carlyfindlay.com.au/2015/02/03/melbournes-got-culture-strictly-ballroom-thriller-live-quippingsjean-paul-gaultier/) - Last week was a fantastic week filled with culture. I love this city. It marked the twelfth year of living in Melbourne - and I certainly did a lot to celebrate!Leisa and I saw Strictly Ballroom the Musical on Tuesday night. I was a guest of Nuffnang. I loved it! I had not seen the
- [Appearance diversity - Sarah's story. "When you're disfigured from an assault, the actual assault remains with you every time you look in mirror."](https://carlyfindlay.com.au/2015/02/01/appearance-diversity-sarahs-story-when-youre-disfigured-from-an-assault-the-actual-assault-remains-with-you-every-time-you-look-in-mirror/) - This post contains accounts and graphic photos of domestic violence. If you or a loved one are in immediate danger, you can contact 000, or you can talk to the crisis lines listed at the bottom of this post.Last year I got a public message on The Design Files' Instagram post from an amazingly brave
- [Disability featured on My Kitchen Rules](https://carlyfindlay.com.au/2015/01/29/disability-featured-on-my-kitchen-rules/) - The new season of My Kitchen Rules sees a contestant with a disability compete. Queensland sisters Sheri and Emilie will cook up a storm in season four of My Kitchen Rules - plating up for judges Pete Evans and Manu Feildel and their fellow contestants. (source)Emilie has been deaf since birth. She says she has no
- [Why Lucia wants to attend the Australian Ichthyosis Meet. "It will feel awesome to be in a room with no-one staring at me!"](https://carlyfindlay.com.au/2015/01/27/why-lucia-wants-to-attend-the-australian-ichthyosis-meet-it-will-feel-awesome-to-be-in-a-room-with-no-one-staring-at-me/) - I have been receiving gorgeous letters from people who are attending the Australian Ichthyosis Meet in May. For many patients and families, this is the first time they have met anyone else with the condition.Here's a letter from Lucia, who you may remember from the 2013 Ichthyosis Awareness Month project. It both excites and saddens
- [Using social media mindfully and for social good is not graffiti.](https://carlyfindlay.com.au/2015/01/26/using-social-media-mindfully-and-for-social-good-is-not-graffiti/) - Saying social media has as much place as graffiti frightens and disappoints me no end. I'm one of many, many people using social media for social good, and these words feel closed minded, insulting and callous.I'm tired of people who don't use social media getting prickly at the thought of what might be happening online
- [Appearance Diversity: "Having no hair does not define who I am."](https://carlyfindlay.com.au/2015/01/22/appearance-diversity-having-no-hair-does-not-define-who-i-am/) - I first met Sarah online in the Blog With Pip course. I was struck by her heartfelt, reflective writing. Several months later we met at a blogger's dinner. It wasn't until I saw Sarah's video for Edenland''s lipsynching awards that I knew she was bald. Her video was so bold, it did make me smile.
- [Disability media and Attitude TV - "Changing attitudes will change
lives".](https://carlyfindlay.com.au/2015/01/20/disability-media-and-attitude-tv-changing-attitudes-will-changelives/) - AttitudeTV has recently come across the ditch, and has been airing on ABC TV in Australia each Saturday at 6.30 and on iView. It is a New Zealand made show focused on people with disabilities. It also holds the Attitude Awards - each International Day of People with a Disability.In Australia, The Attitude Foundation - chaired by
- [Wedding invitation sneak peek](https://carlyfindlay.com.au/2015/01/18/wedding-invitation-sneak-peek/) - I am hesitant to share too many details about our wedding on my blog or social media. I want it to be a surprise - for our guests, for our friends who can't be there on the day, and for my fiancé, of course. I now understand the element of surprise that brides want for
- [Getting shit done. On being productive.](https://carlyfindlay.com.au/2015/01/15/getting-shit-done-on-being-productive/) - I'm a busy person. And I enjoy it. I don't like to complain about being busy because most of what keep me busy is my choice. On top of a day job I maintain this blog, do freelance writing, some speaking events, cook, socialise and sort of keep house. I never switch off. My mind
- [Rick Guidotti from Positive Exposure was in town!](https://carlyfindlay.com.au/2015/01/13/rick-guidotti-from-positive-exposure-was-in-town/) - Guess who was in town?! My dear friend Rick Guidotti, founder and photographer at Positive Exposure. He was in Australia for the Skin to Live In - skin impressions project.Rick humanises medical conditions. He photographs people with differences - giving viewers the chance to see sheer beauty. And his photography enables his subjects to see
- [Appearance Diversity: Changing the Face of Beauty  (#imready for #15in2015)](https://carlyfindlay.com.au/2015/01/11/appearance-diversity-changing-the-face-of-beauty-imready-for-15in2015/) - (source)Through appearance activism by blogging and social media, I’ve been fortunate to meet a lot of people doing amazing things to promote appearance diversity. I’ve been chatting to an Australian woman, Catia Malaquias, whose young son Julius has Down’s syndrome (both pictured below). She and Julius are doing a great job of promoting diversity in advertising.
- [Blogging about disability - a chat on No Limits, Channel 31](https://carlyfindlay.com.au/2015/01/08/blogging-about-disability-a-chat-on-no-limits-channel-31/) - Late last year I was invited back to produce and anchor an episode of No Limits on Channel 31. My dear friend Kath (director of the show) was interested in how blogging allows people with disabilities to have a voice, and she wanted me to discuss that.So I invited some other dear friends - who I've met
- [You want to become a published writer? Start a blog.](https://carlyfindlay.com.au/2015/01/06/you-want-to-become-a-published-writer-start-a-blog/) - Friends, if you're wanting to become a published writer, I highly recommend starting a blog (and promote your blog on social media). I know I bang on about blogging so much, but it really is a gateway to getting wider exposure.Blogging is a great way to get practice, to show commitment to a task, to
- [2015 - the year of no apologies about my skin and cream.](https://carlyfindlay.com.au/2015/01/04/2015-the-year-of-no-apologies-about-my-skin-and-cream/) - 2015 will be the year of no apologies about my skin and cream. That's my resolution.For years - almost my whole life - I’ve apologised about my skin interfering with others. And now I will stop. The need to apologise has stemmed from others being outwardly inconvenienced by it - vacuuming where I’ve walked, wiping
- [You are invited to the Australian Ichthyosis Meet - May 2015](https://carlyfindlay.com.au/2015/01/01/you-are-invited-to-the-australian-ichthyosis-meet-may-2015/) - When I was a child, I hadn't met anyone else with Ichthyosis. I thought I was all alone. Since I have been blogging, I've come to meet many, many people with Ichthyosis - many overseas and a few in Australia. And it's been wonderful. We've been able to share advice, lean on each other in
- [Pop quiz.](https://carlyfindlay.com.au/2014/12/28/pop-quiz/) - A couple of weeks ago, I went to a little online Christmas party in the Blog with Pip Facebook group. I wore my pyjamas and drank a glass of wine. Pip very cleverly got the discussion happening by asking us all some questions about what we did in 2014. It was wonderful to see how
- [2014 - the best year of my life.](https://carlyfindlay.com.au/2014/12/23/2014-the-best-year-of-my-life/) - I write this with a heavy heart, and also a sense of relief and huge accomplishment. And a huge smile.I finished my day job for the year this afternoon. No more work until 5 January - and boy do I need the break. But I finished my day job this afternoon - my dream job,
- [He loves all of me, and all that I leave behind.](https://carlyfindlay.com.au/2014/12/21/he-loves-all-of-me-and-all-that-i-leave-behind/) - Since being with Adam, I've come to see what it means when someone truly embraces my skin condition and my appearance. He doesn't look past or love me in spite of the way I look. He doesn't accept or tolerate - those terms are condescending and suggest someone has to accommodate a disability. He loves
- [Sad and exhausted.](https://carlyfindlay.com.au/2014/12/19/sad-and-exhausted/) - I'm exhausted. The kind of exhaustion that comes with sadness and busyness. Adam is doing his very best to make me laugh, with funny dancing, but truth is, I just want to do nothing.It's been a hard month. So much grown up stuff to deal with. The tragedies this week - in Sydney, Pakistan and
- [Skin conditions aren't just cosmetic and they need to be taken seriously.](https://carlyfindlay.com.au/2014/12/14/skin-conditions-arent-just-cosmetic-and-they-need-to-be-taken-seriously/) - A seven month old baby with Ichthyosis passed away last weekend. Such a terrible tragedy. My thoughts are with his family and the Ichthyosis community. Rest in peace little one. This tragedy is a reminder that skin conditions are not just cosmetic. Many people think that a skin condition affects appearance only, and that its
- [Birthday celebrations. Lucky and loved.](https://carlyfindlay.com.au/2014/12/11/birthday-celebrations-lucky-and-loved/) - This week. It's been tough. But it's been good to laugh and spend time with friends. Today I am popping out on my lunch break to record a quick tribute to Stella Young for Channel 31, and tonight the Quippings crew are performing. Reflective. A colleague gave me these flowers on my birthday - so pretty. I feel so
- [Shine brightly, Stella Young.](https://carlyfindlay.com.au/2014/12/10/shine-brightly-stella-young/) - I wrote this tribute for Writers Victoria. My thoughts are with Stella's family and close friends. Her death has impacted the disability community immensely. I have had a few days to collect my thoughts, but 1000 words just aren't enough to express what Stella did for disability advocacy. We need intelligent, relevant, humorous and topical
- [Happy birthday to me and my blog! Giant giveaway!](https://carlyfindlay.com.au/2014/12/07/happy-birthday-to-me-and-my-blog-giant-giveaway/) - It's my birthday today! Yay! I'm 33. I never work on my birthday but this year I'm going to work for my birthday because I've had a few days off lately. I joked that working on my birthday is my present to the team. And then I'm off for dinner. I bought myself a MacBook
- [Appearance Diversity: disfigured fruit and vegetables. Ugliness dictating worth.](https://carlyfindlay.com.au/2014/12/04/appearance-diversity-disfigured-fruit-and-vegetables-ugliness-dictating-worth/) - I got to thinking about appearance diversity when seeing some disfigured vegetables on the news last night. Who would have thought the two are related? So, hear (read?) me out. 'Ugly' fruit and vegetables - sold at a discounted price. Woolworths is marketing The Odd Bunch - where fruit and vegetables are personified, cute faces
- [The state (and importance) of disability media.](https://carlyfindlay.com.au/2014/12/02/the-state-and-importance-of-disability-media/) - Today is International Day of People with Disability. (I'm pictured with the amazing Quippings crew - a disability performance group.)The theme of this year's Disability Day is 'Sustainable development: the promise of technology'.About a month ago I was recognised as a finalist in the Yooralla Media Awards for this piece. Last week I declined my
- [Powerful friendships are made online.](https://carlyfindlay.com.au/2014/11/30/powerful-friendships-are-made-online/) - I went to a blogging awards party on the weekend. It was so good to catch up with online friends in person. I took three photos the entire night - before the event. I sent one tweet. Connection in person took precedence.There was hugs, air kissing, and some bloggers are lip kissers. It was a
- [Ten reasons I am thankful for having Ichthyosis.](https://carlyfindlay.com.au/2014/11/27/ten-reasons-i-am-thankful-for-having-ichthyosis/) - I AM thankful for having Ichthyosis.The incredible Stephanie (supermum - she's just given birth to her second baby!) has put together a list of reasons she's thankful for having Ichthyosis. I contributed too, so did Mui and Hunter. I can relate to what they're grateful for too. We don't celebrate Thanksgiving here in Australia, but
- [Memories of donkey riding, mid 1980s](https://carlyfindlay.com.au/2014/11/23/memories-of-donkey-riding-mid-1980s/) - We did a lot of things outdoors when I was little. Running under the sprinkler, gardening, fishing for pippies, camping...and donkey riding. It's funny, because I really don't enjoy the outdoors and what it does for my skin, and I don't remember liking it when I was a kid either. I guess I didn't want
- [What's love got to do with it? I don't agree with Sarah Wilson's idea
that self-hatred is making us sick.](https://carlyfindlay.com.au/2014/11/22/whats-love-got-to-do-with-it-i-dont-agree-with-sarah-wilsons-ideathat-self-hatred-is-making-us-sick/) - I have a chronic illness and I love myself sick. Sarah Wilson believes self-hatred is making us sick.Sarah Wilson describes herself as a "blogger, author and wellness coach". She is perhaps best known for her editorship at Cosmopolitan Magazine, host of season one of Masterchef Australia and I Quit Sugar evangelism (oh they all seem
- [Ichthyosis Awareness: Questions, whispers and stares. A guest post by
Bailey.](https://carlyfindlay.com.au/2014/11/20/ichthyosis-awareness-questions-whispers-and-stares-a-guest-post-bybailey/) - As a blogger, I'm constantly aware of the privilege of being able to broadcast my opinion, and also that not everyone will agree with my opinion. So when I wrote a blog post on the intrusion of peoples' curiosity, I got a few comments disagreeing with my opinion and the way I view questions and
- [Me and my Mum: devouring dinosaur bones and going to the theatre](https://carlyfindlay.com.au/2014/11/18/me-and-my-mum-devouring-dinosaur-bones-and-going-to-the-theatre/) - Over the weekend my Dad spent time scanning old photos and uploading them to facebook. He was probably bored without Mum (she was down in Melbourne with me) and they've also just got the NBN, so hello fast internet! He uploaded this one - I'd never seen it before. I love my time with Mum
- [These are the bloggers to watch. BUPA Health Influencer Awards 2014](https://carlyfindlay.com.au/2014/11/16/these-are-the-bloggers-to-watch-bupa-health-influencer-awards-2014/) - I was so lucky to be involved in the BUPA Health Influencer Awards again this year. The team at BUPA few last year's winners up to Sydney to present this year's winners their awards. I love these awards - they support diversity, good writing and social good. It is wonderful to see a diverse range
- [Taking it gracefully. Unsolicited comments and advice re my skin in the
workplace.](https://carlyfindlay.com.au/2014/11/13/taking-it-gracefully-unsolicited-comments-and-advice-re-my-skin-in-theworkplace/) - These things have been said to me in the workplace:Once in a work lift, someone asked: "Is there a cure for that? I couldn’t handle looking like you." (Superficial much?)Another time, a colleague brought their partner into work and said: "This is Carly. I've told you about her before. Do you think she's as
- [Keeping it real: me without my face on. And the most embarrassing thing I've done on the Internet.](https://carlyfindlay.com.au/2014/11/11/keeping-it-real-me-without-my-face-on-and-the-most-embarrassing-thing-ive-done-on-the-internet/) - A couple of weeks ago, I got home to find I had no hot water. The storms we had caused the tank's thermostat to trip, and I was without hot water overnight. It was fixed in less than 24 hours of the discovery. So thankful!It's imperative I have a shower twice a day - in
- [Why I won't provide disability advice for free](https://carlyfindlay.com.au/2014/11/09/why-i-wont-provide-disability-advice-for-free/) - I wrote an article for ABC Ramp Up toward the end of its era - it was about why I won't provide disability advice for free. A couple of months after that, I received a query to talk - for free. It was at a university, to empower students to seek employment in the workforce.
- [Living the unexpected. Marriage (and maybe babies).](https://carlyfindlay.com.au/2014/11/06/living-the-unexpected-marriage-and-maybe-babies/) - It's almost like I censor myself from addressing all of the micro aggressions I encounter - because I worry about the perception of complaining too much or finding discrimination that others don't see. They don't see the discrimination because maybe they've not experienced it. But this is my truth, and I will tell it. And
- [Lately.](https://carlyfindlay.com.au/2014/11/04/lately/) - Here's a little of my life lately. It's been super busy. I will resume to regular writing soon. I've developed this disclaimer page to tell you about the time it might take me to contact you if you've left a message. I honestly try to respond to everyone but a busy life means I can't
- [Integrity, reach and tabloids](https://carlyfindlay.com.au/2014/11/02/integrity-reach-and-tabloids/) - When I started out writing this blog and then for media publications, I vowed never to touch a tabloid publication. I view many of them as grubby and sensational, and often reducing or inflating tales of disability to pity or heroism.And then I told/sold my story to a UK publication, an Australian gossip magazine, and
- [More thoughts on misappropriation of scary face at Halloween.](https://carlyfindlay.com.au/2014/10/30/more-thoughts-on-misappropriation-of-scary-face-at-halloween/) - I did an interview about my thoughts on scary face at Halloween yesterday. Please be considerate of misappropriation that may offend. It's over here. And don't read the comments.My actual writing on this topic is on my blog. It's in far more detail than the interview.Today three parents of kids with Ichthyosis told me their
- [Appearance Diversity: World Psoriasis Day - Hanah's story.](https://carlyfindlay.com.au/2014/10/28/appearance-diversity-world-psoriasis-day-hanahs-story/) - Today is World Psoriasis Day. I'm featuring a guest post by my gorgeous friend Hanah. She has psoriasis - an inflammatory skin condition - and she does so much to raise awareness of the condition. When I saw her promoting the cause on social media, I asked her if she could write a post for
- [Love Your Sister book giveaway plus TedX videos.](https://carlyfindlay.com.au/2014/10/27/love-your-sister-book-giveaway-plus-tedx-videos/) - It's been such a privilege to cover some of the Love Your Sister journey on my blog.Samuel Johnson (actor, voiceover artist and all round nice guy) spent one year riding more than 15,000 km on a unicycle. He did it because his sister Connie is dying from breast cancer. It started off as a dare
- [On setting blogging boundaries](https://carlyfindlay.com.au/2014/10/26/on-setting-blogging-boundaries/) - One of the best things about blogging and freelance writing is all the wonderful people I meet – both in person and virtually. Readers connect with bloggers because they empathise and relate to our experiences. Bloggers share a lot of themselves – anecdotes, struggles, happiness, advice.The level of personal information we share is different to
- [And so we're here. One year on.](https://carlyfindlay.com.au/2014/10/25/and-so-were-here-one-year-on/) - It's a year since Adam and I met in person today. We went on a rather untalkative date to a Mexican restaurant. Neither of us thought we'd be here together today. I saw this quote and thought it matched that picture perfectly. The way he looks at me. It's love like I've never imagined. He
- [Sore yet so thankful. Online connection - it's a cheer squad.](https://carlyfindlay.com.au/2014/10/21/sore-yet-so-thankful-online-connection-its-a-cheer-squad/) - I was so very sore yesterday. It felt pretty awful. My legs were throbby and weeping and inflamed. I don't know if you know what it feels like to have sore skin. I can't even really explain. It's like my skin is hot and damp, and my limbs are heavy. It feels like my skin
- [Paint the town Ford: road tripping to the Mornington Peninsula. Competition closed.](https://carlyfindlay.com.au/2014/10/19/paint-the-town-ford-road-tripping-to-the-mornington-peninsula-competition-closed/) - This post is sponsored by Ford and Kidspot. There's a chance for you to win a $500 Temple and Webster voucher too. This competition is now closed. The winner has been notified. Thanks for entering. Earlier in the year, my little old reliable 23 year old car went to the wreckers - it died an
- [Sticking my hand in a giant tub of paraffin will probably feel like I'm helping a cow give birth.](https://carlyfindlay.com.au/2014/10/18/sticking-my-hand-in-a-giant-tub-of-paraffin-will-probably-feel-like-im-helping-a-cow-give-birth/) - I ran some errands this morning - visits to the post office and pharmacy. The pharmacist made me up a two litre tub of cream (my usual mix of 60% soft white paraffin and 40% liquid paraffin). My tubs are usually 500 grams. This is huge!!I imagine dipping my hand into this giant tub will
- [Reflections on final high school exams, 15 years on.](https://carlyfindlay.com.au/2014/10/14/reflections-on-final-high-school-exams-15-years-on/) - Final high school exams have started in Australia. I hope the High School Certificate (HSC) students went well with their first exams on Monday.Please remember your end of school exams aren't the be-all and end-all of your life. There's so much ahead of you. Doing you want to do is a journey, and you don't
- [Recovering from blogger burnout. Losing myself in shaping my blog.](https://carlyfindlay.com.au/2014/10/12/recovering-from-blogger-burnout-losing-myself-in-shaping-my-blog/) - I wrote some of this post, ironically, after I said I need to take a short break from blogging. I was writing again pretty much immediately after pressing publish. I got this amazing comment on my blog, after that post. It spoke to me:"This is just my opinion, so take it for what it is
- [Building confidence in children with visible differences.](https://carlyfindlay.com.au/2014/10/07/building-confidence-in-children-with-visible-differences/) - Recently, a friend told me about her son’s reaction to someone commenting inappropriately about his Ichthyosis. She said it was not confident like it would have been a year ago. He looked down on the ground and said nothing. I felt sad for him – and could relate.Sometimes it seems like the questions we receive
- [How wonderful life is now that you are in my world.](https://carlyfindlay.com.au/2014/10/05/how-wonderful-life-is-now-that-you-are-in-my-world/) - Today marks exactly one year since Adam contacted me through OK Cupid. I went back through my emails confirming the date - and while I can't see his full message because I no longer have an account, I could see that he told me I seem like a nice person and that he likes my
- [The Australian Financial Review and Westpac 100 Women of Influence Awards for 2014](https://carlyfindlay.com.au/2014/10/05/the-australian-financial-review-and-westpac-100-women-of-influence-awards-for-2014/) - I am excited to announce some news - I've been named a winner in the The Australian Financial Review and Westpac 100 Women of Influence Awards for 2014 - it's for my work in promoting appearance diversity through writing and speaking. Read the news story here. It is an honour to be named as a
- [Overwhelm. Blogger burnout. Taking a short break.](https://carlyfindlay.com.au/2014/09/28/overwhelm-blogger-burnout-taking-a-short-break/) - I currently feel overwhelmed with stuff I have to do. The day job is busy, I'm performing at the Melbourne Fringe Festival this Friday and Saturday, I've got some nights out at the movies and theatre this week, I need to exercise and keep house, and there is a backlog of draft blog posts (and
- [Unfit. I'm changing that today.](https://carlyfindlay.com.au/2014/09/23/unfit-im-changing-that-today/) - After many, many months of not going to the gym because of not having a car, traveling the world and a long time being sore, I'm taking it up again today.I feel like a heffalump and need to get my bridal body. I don't weigh myself but my clothes feel uncomfortable on me, and I
- [Lads' mags and nude films. A lesson in appearance diversity.](https://carlyfindlay.com.au/2014/09/21/lads-mags-and-nude-films-a-lesson-in-appearance-diversity/) - Part oneThis isn't a piece to examine or to criticise the intent, it's writing out my feelings. It's exploring why I feel this way. I've sought permission from Adam to run this post. It also contains a little nudity.I don't believe women's bodies should be objectified, and I don't believe men's should be either. I
- [The SCAR Project. On beauty.](https://carlyfindlay.com.au/2014/09/17/the-scar-project-on-beauty/) - I pinch myself at the opportunities I've had these past few years. It is amazing to be asked to speak or write about what it's like to look difference - to such diverse audiences. On Friday I'm talking on a panel at The SCAR Project in Sydney. "The National Breast Cancer Foundation (NBCF) is proud
- [Sliding doors moments.](https://carlyfindlay.com.au/2014/09/14/sliding-doors-moments/) - This post has been in my drafts for more than a year. I am glad to relive these conversations and finally post this. This is a lengthy post about 'sliding doors moments' - you know, the times when you are at a fork in the road and could have chosen left but you went right?
- [Ichthyosis Awareness: Mark and Hunter's story. "It’s not what you are dealt, but how you deal with what you’ve been dealt."](https://carlyfindlay.com.au/2014/09/11/ichthyosis-awareness-mark-and-hunters-story-its-not-what-you-are-dealt-but-how-you-deal-with-what-youve-been-dealt/) - I've admired Hunter Steinitz for a long time. She's a fantastic role model for young people with Ichthyosis. I'd love to meet her one day. In recent months, I've come to know her Dad, Mark. I love their close relationship, it reminds me of my Dad and I. I asked Mark to tell his and
- [Your curiosity about my appearance doesn't need to be satisfied with an explanation.](https://carlyfindlay.com.au/2014/09/09/your-curiosity-about-my-appearance-doesnt-need-to-be-satisfied-with-an-explanation/) - It is an interesting (not necessarily comfortable) place to be in - the subject of discussion and speculation. Things like this happen quite regularly, still they never cease to amaze me:While waiting in a queue at a cafe near work yesterday morning, I heard the baristas say things like "she uses cream because her body
- [Why did I decide marriage is for me?](https://carlyfindlay.com.au/2014/09/07/why-did-i-decide-marriage-is-for-me/) - A little while ago, I asked you what questions you'd like answered. I got some questions on my blog, Instagram and Facebook. Peter, a friend I met on online dating about two years ago asked me this big questions:"In this day and age, when there are many happy de facto couples, why have you chosen
- [Good blogging is all about love.](https://carlyfindlay.com.au/2014/09/06/good-blogging-is-all-about-love/) - I've been hearing a few murmurs of worry amongst the new bloggers. 'Am I doing this right?' 'I don't want to compete, I just want to write for the love of it.' 'When will I be recognised?' 'I feel like I don't fit in.' 'I just can't get the engagement that others have.' A lot
- [Ichthyosis Awareness - Shawna Lynne Grady sings.](https://carlyfindlay.com.au/2014/09/03/ichthyosis-awareness-shawna-lynne-grady-sings/) - My friends in the Ichthyosis community were sharing this video of a young woman singing. I was impressed with her sound, and the reach of her videos.She also has Ichthyosis and she has skyrocketed to YouTube fame with her songs. And she's breathtakingly beautiful. Meet Shawna Lynne Grady. "When first asked why I sing, I
- [Some things about the amazing Problogger event](https://carlyfindlay.com.au/2014/09/01/some-things-about-the-amazing-problogger-event/) - I've returned from the Gold Coast where I spent three days in blogging heaven - two days at the Problogger event and socialising before and after. My mind is so thinky. I'm jumping about with ideas - ones I can implement now, in a month, in six months and in a year. I hope to
- [Blogging tips: success doesn't always mean high page views and sponsored posts.](https://carlyfindlay.com.au/2014/08/31/blogging-tips-success-doesnt-always-mean-high-page-views-and-sponsored-posts/) - One day, during a ProBlogger Twitter Chat, I got into a debate with a blogger who placed all their worth on statistics. Small page views meant they did not feel successful. I tried to tell them that success is more than just page views, but it was hard to convince them in 140 characters.One big
- [Blogging for social good](https://carlyfindlay.com.au/2014/08/27/blogging-for-social-good/) - On Saturday I'm giving a talk on a panel at the Problogger conference. The panel is about blogging for social good - I will be in esteemed company with nutritionist Emma Stirling, World Vision's Stephen Ellis, and 2012's Best Australian Blogger Eden Riley. What a panel! I'm so honoured! When I began blogging - way
- [On panic attacks, failures and making my own destiny.](https://carlyfindlay.com.au/2014/08/24/on-panic-attacks-failures-and-making-my-own-destiny/) - I've sat on this post for a while now, stopping and starting - worried that it would be bordering on vague blogging, or that it's too risky to post. But as usual, the power of writing won out. It's really therapeutic.-I recently had my first panic attack. A mini breakdown I guess you could call
- [Advice for attending a blog conference.](https://carlyfindlay.com.au/2014/08/21/advice-for-attending-a-blog-conference/) - I'm super excited to go to the Problogger Event next week. It's a four day weekend for me - a holiday in the sunshine state and a catch up with good friends, plus visiting the breakfast buffet more than once. But it's also worky - I'm going to drink all the bloggy advice (and the
- [Please support the Disability Voice campaign.](https://carlyfindlay.com.au/2014/08/19/please-support-the-disability-voice-campaign/) - A couple of months ago I went to the Save ABC Ramp Up protest outside the ABC studios in Southbank. There were about 25 of us protesting - chanting and waving signs, and the media covered it. There was a strong sense of unity. We will not be silenced. I was a proud writer for
- [Feeling like a freak on the opposite ends of the spectrum](https://carlyfindlay.com.au/2014/08/17/feeling-like-a-freak-on-the-opposite-ends-of-the-spectrum/) - I've felt like a freak on opposite ends of the spectrum - by strangers, and by people I expect to care for me. I define the meaning of freak - based on my own experience - to be stared at, unwillingly on display for others to gawk and laugh at. I've also felt like a
- [Appearance diversity: Hanka's story. "The more I read about other people with an unusual appearance the more I felt I’m not alone."](https://carlyfindlay.com.au/2014/08/13/appearance-diversity-hankas-story-the-more-i-read-about-other-people-with-an-unusual-appearance-the-more-i-felt-im-not-alone/) - A while back I got a lovely message from Hanka, from Germany.She wrote: "I want to say thank you. I'm reading your blog since a couple of months and it helped me very much ... I have a port wine stain on my face and I have laser therapy for almost 16 years. I never
- [How I cope with Ichthyosis and working full time.](https://carlyfindlay.com.au/2014/08/10/how-i-cope-with-ichthyosis-and-working-full-time/) - A few people with Ichthyosis and disabilities have asked me how I maintain a full time job and how I talk to my managers about my condition. So here's my employment story.I have always wanted to work. I think working is very important. Working has helped me become more confident. Working also helps me feel
- [My blogging and brand journey.](https://carlyfindlay.com.au/2014/08/09/my-blogging-and-brand-journey/) - Yesterday I chatted to Kate Larsen - director of Writers Victoria and a researcher from Melbourne university about blogging and advocacy and the importance of storytelling for people with disabilities. I was asked what have been the challenges of blogging. One thing I mentioned was the lack of brand engagement with my blog.While I've always
- [So beautiful.](https://carlyfindlay.com.au/2014/08/06/so-beautiful/) - My love, he's got this joke with me. It's a play on everyone who intrusively asks me about my face."What's on your face?", he says. Then he adds, "Oh it's just beautiful."And boy do I smile when he says that. I am the luckiest.I don't need anyone but myself to make me feel happy with
- [What is it that you'd like to know?](https://carlyfindlay.com.au/2014/08/03/what-is-it-that-youd-like-to-know/) - While I've got a heap of blog posts in draft (so many ideas!), and I mostly write because it gives so much back to me, I do wonder what I can give back to you, my readers. It's often Facebook discussions or questions I get about Ichthyosis that inspires me to write a blog post.
- [Taking stock.](https://carlyfindlay.com.au/2014/08/01/taking-stock/) - There are cute little assignments on the Blog With Pip course - they don't feel like study assignments. Sometimes when I want to write but I don't have the energy to put all the words together, lists are good to get started. Little bits of writing get me thinking. Like this one: taking stock. Making
- [Ichthyosis Awareness: Lucy and Chloe. Difference is nothing to be afraid of.](https://carlyfindlay.com.au/2014/07/30/ichthyosis-awareness-lucy-and-chloe-difference-is-nothing-to-be-afraid-of/) - I have come into contact with so many people through writing about Ichthyosis. Many of them are parents of kids with Ichthyosis - and they've all got one thing in common. They're all fighting for their child's rights - both medical and social. I see so many of my own childhood experiences repeated - the
- [Why I write.](https://carlyfindlay.com.au/2014/07/27/why-i-write/) - I write because I love it.I write to tell the world my story. I write to be published elsewhere. I write because I love seeing the blank screen turn into something that others enjoy reading. It's like packaging my thoughts and sending them out to the world to help others. I write to change people's
- [Where I want to be. Melbourne Writers Festival and Problogger.](https://carlyfindlay.com.au/2014/07/25/where-i-want-to-be-melbourne-writers-festival-and-problogger/) - It takes lots of hard work and a few years to 'make it' in blogging. People new to the hobby/profession think it will be easy - bang out a few posts and bam! You'll have thousands of followers. It's not like that. It is a steep climb. After four years of having a Facebook page
- [In sickness and in health](https://carlyfindlay.com.au/2014/07/23/in-sickness-and-in-health/) - After I came out of hospital earlier this month, Adam would sit on our bed and tuck me in, making sure I was warm. He brought me my antibiotics on time, and breakfast in bed too. He carefully pushed the hair out of my eyes, cupped my face in his hands and kissed me. He
- [MasterChef inspired mystery box challenge for my love.](https://carlyfindlay.com.au/2014/07/20/masterchef-inspired-mystery-box-challenge-for-my-love/) - Firstly, how cute is this?! Oh the romance.Adam and I watch MasterChef together. He started off being openly bored about watching cooking shows - read: yawning - but now he's more eager than me. If I'm not home he will give me an update the next day. He is so tense watching the contestants stress,
- [The big peel](https://carlyfindlay.com.au/2014/07/19/the-big-peel/) - I am never well when I get out of hospital. Well for my standards anyway. It's a place for treatment and discussions with doctors and educating nurses about a condition they've never heard of. But it's not a place for rest. Sleep is interrupted by peeling my legs off a plastic mattress after the sheet
- [Facing my own prejudice about disability - Leisa's story. (And some Peter Dinklage and Hugh Jackman fangirling.)](https://carlyfindlay.com.au/2014/07/16/facing-my-own-prejudice-about-disability-leisas-story-and-some-peter-dinklage-and-hugh-jackman-fangirling/) - Earlier this week I shared the story of facing my own prejudices. My friend Leisa, a short statured woman, wrote this piece inspired by me telling her that story. She read it out at the Emerging a Writers Festival Literary Salon in June, and I was wowed. (Leisa is pictured below, rocking a red dress.)(Photo
- [Facing my own prejudice about disability.](https://carlyfindlay.com.au/2014/07/13/facing-my-own-prejudice-about-disability/) - I follow a wonderful blog called This Little Miggy - she writes of her little girl who has a disability, and celebrates other children who have disabilities.It struck me when I read this post where Miggy comes to terms with her own prejudices. Miggy writes: "I met a woman a few months ago who also
- [A Mighty Girl](https://carlyfindlay.com.au/2014/07/11/a-mighty-girl/) - Oh wow!I woke up to being featured on A Mighty Girl again! The post was a recap of what happened when I took on the trolls on Reddit. I adore the A Mighty Girl Facebook page - it features pioneers and role models of all ages, and so it's an honour to be featured. Thanks
- [Appearance diversity: Boob in a Box.](https://carlyfindlay.com.au/2014/07/09/appearance-diversity-boob-in-a-box/) - I came across Boob in a Box when the blogger, Julie, sent me a tweet telling me she'd mentioned me in a blog post about what it felt to look different because of cancer. I loved her post so much - it was another perspective on appearance diversity. And Julie is a great writer -
- [New touch. Life after skin hunger.](https://carlyfindlay.com.au/2014/07/06/new-touch-life-after-skin-hunger/) - I've been experiencing new touch. I realise I'm far from experiencing skin hunger now. I can't even remember what it's like to yearn for touch after doing so for years. It's like this frequent touch has erased all loneliness. He holds me so tight I might burst. My love is so willing and eager to
- [Sore.](https://carlyfindlay.com.au/2014/07/05/sore/) - While I maintain that I don't suffer, there are times when the pain of my Ichthyosis is unbearable. The pain seems to drill down the depth of my skin - from the epidermis on my chubby calves down to the very core of my hyperdermis. It's burning and throbbing and hurts to touch.Right now my
- [Appearance diversity: Turia Pitt tells her story.](https://carlyfindlay.com.au/2014/07/02/appearance-diversity-turia-pitt-tells-her-story/) - Last week Australian Women's Weekly released their July issue featuring Turia Pitt, burns survivor, on the cover. I wrote about that here, and it was republished on Daily Life. Since then, Turia and I have been in touch on Twitter and she agreed to share her story here as part of the Appearance Diversity series.
- [Why it's important for Turia Pitt, burns survivor, to grace the cover of a national women's magazine.](https://carlyfindlay.com.au/2014/06/25/why-its-important-for-turia-pitt-burns-survivor-to-grace-the-cover-of-a-national-womens-magazine/) - Turia Pitt is one of the most important people to feature on the cover of a magazine. I can't think of a person with a facial difference to feature so prominently in mainstream media in my lifetime. Turia Pitt is a burns survivor and she's pictured in her natural and beautiful state - not retouched
- [Making memories of us. A sponsored post.](https://carlyfindlay.com.au/2014/06/22/making-memories-of-us-a-sponsored-post/) - This post is sponsored by Nuffnang.The memories I've made with my boy (FIANCÉ!) are ones I will treasure for life. While he's certainly got an eye for jewellery (did you see my engagement ring?!) and I have some special silver pieces to remind me of our love, it's the things we do together that are
- ["I bet your ring cost a few months' salary" and other questions encountered as a bride-to-be.](https://carlyfindlay.com.au/2014/06/18/i-bet-your-ring-cost-a-few-months-salary-and-other-questions-encountered-as-a-bride-to-be/) - I'm pretty used to intrusive questions. Used to them but tired of them. Something I didn't foresee upon getting engaged is that my life is now open to a whole new set of intrusive questions. Some questions are so personal they should only be asked in a doctors surgery. They're the nosey questions and comments
- [Taxi driver education - a positive outcome I helped to achieve!](https://carlyfindlay.com.au/2014/06/16/taxi-driver-education-a-positive-outcome-i-helped-to-achieve/) - You may remember in July last year I was harassed by a taxi driver - he said the skin and cream on my face would ruin his car.I wrote my complaint on my blog, and formally too. I took this case to the Human Rights Commission, the Victorian Taxi Commission and 13Cabs. One of the
- [Travel tales: talking to school children in Scotland.](https://carlyfindlay.com.au/2014/06/15/travel-tales-talking-to-school-children-in-scotland/) - I spoke to a group of 8-12 year old children about diversity when I was in Scotland. The friends I stayed with have a primary school aged son, and they suggested to the principal that I talk to the class. I stayed in a tiny town in Ardrishaig, about 2.5 hours drive from Glasgow. The
- [Travel tales: Disneyland Paris. The happiest place on earth.](https://carlyfindlay.com.au/2014/06/11/travel-tales-disneyland-paris-the-happiest-place-on-earth/) - I need a little reminding of the happiest place on earth. I want to relive the fun! When I was in Paris I went to Disneyland! It's about 30 minutes by train from National Station, and entry is around €75. I only stayed for three hours and didn't go on many rides, but gosh I
- [Blogging tips: What do bloggers owe their readers?](https://carlyfindlay.com.au/2014/06/09/blogging-tips-what-do-bloggers-owe-their-readers/) - I occasionally read blog posts where the blogger is apologising to their readers for either not blogging for a while or for taking a new direction. I don't think there's any need to apologise. It's your space, for your own pace, your own race. That's the beauty of a blog - it can be anything
- [Ichthyosis and self care](https://carlyfindlay.com.au/2014/06/05/ichthyosis-and-self-care/) - One of the things I noticed during Ichthyosis Awareness Month, and also when staying with friends affected by Ichthyosis, is the amount of (and differing) time it take to care for the skin. There is a lot involved, and often a lot of stuff to carry. I especially noticed DeDe's commitment to caring for Evan
- [Wonder by RJ Palacio. Choose kind.](https://carlyfindlay.com.au/2014/06/03/wonder-by-rj-palacio-choose-kind/) - When I was in NYC I spent an afternoon with Rick Guidotti By chance he had a parcel arrive, and inside was his copy of Wonder - returned from a friend who'd borrowed it. He passed it onto me. (source)Wonder is written by RJ Palacio and I've devoured it in a day. (There may be
- [I bought my wedding dress.](https://carlyfindlay.com.au/2014/06/02/i-bought-my-wedding-dress/) - (source) On Saturday, very unexpectedly, I bought my wedding dress.I never thought I'd try one on. I never thought I'd be a bride. I never thought love would be so good. Those nevers have now been banished to "of course I will". Because my path has changed. I'm no longer single, no longer thinking I
- [Ichthyosis Awareness Month: my story. I am not a sufferer.](https://carlyfindlay.com.au/2014/05/30/ichthyosis-awareness-month-my-story-i-am-not-a-sufferer/) - May. It was a busy month. Five countries, five plane trips, two longish train trips, lots of freelance writing, three writing classes taught, a bout of very sore skin, a lurgy that could only be cured with doses of brandy and dry ginger ale and 41 stories written by people experiencing Ichthyosis and then edited
- [Ichthyosis Awareness Month: meeting Matthew, Aurora and Michael in Chicago. "We people who have a skin condition like this have to live a harder life then you other people do."](https://carlyfindlay.com.au/2014/05/29/ichthyosis-awareness-month-meeting-matthew-aurora-and-michael-in-chicago-we-people-who-have-a-skin-condition-like-this-have-to-live-a-harder-life-then-you-other-people-do/) - I had dinner in Chicago with a family that has three children with Lamellar Ichthyosis. Denise and Mike - the parents of the children - had driven an hour one cold Sunday night to have dinner with me. We ate deep dish pizzas, talked and laughed and nodded in empathy.The children and I talked about
- [Ichthyosis Awareness Month: Tania, Litia and Zadie's story. "I know I'm a lucky mum."](https://carlyfindlay.com.au/2014/05/29/ichthyosis-awareness-month-tania-litia-and-zadies-story-i-know-im-a-lucky-mum/) - Last year I had lunch with a wonderful family - Tania and Edwin, and their two little girls Litia and Zadie. Litia and Zadie were funny, artistic and really good conversationalists. They were cute and giggly. As I wrote last year, They guessed my age at 90 and 20, and then asking "how come you
- [Ichthyosis Awareness Month: Bailey's story. "I began to believe that I am beautiful. I chose to accept my skin and began to love it."](https://carlyfindlay.com.au/2014/05/28/ichthyosis-awareness-month-baileys-story-i-began-to-believe-that-i-am-beautiful-i-chose-to-accept-my-skin-and-began-to-love-it/) - Bailey was one of the stars in last year's Ichthyosis Awareness Month Blog Project. This past year she's had success in beauty pageants - not only showcasing physical beauty but talent and intelligence too. She's got Lamellar Ichthyosis and a very positive outlook. She did a video for FIRST:(The photos of Bailey in the white
- [Ichthyosis Awareness Month: Jayden and Jane's story. "there are people in this world that are born a little bit different and that it's ok,"](https://carlyfindlay.com.au/2014/05/28/ichthyosis-awareness-month-jayden-and-janes-story-there-are-people-in-this-world-that-are-born-a-little-bit-different-and-that-its-ok/) - Little Jayden has Harlequin Ichthyosis - his mum Jane writes of the challenges of giving birth to a baby with a very rare and severe skin condition. As she writes, Ichthyosis can affect so much of a baby's development - from feeding and weight gain to movement. She cites the stares Jayden receives as being
- [Ichthyosis Awareness Month: Brittany's story. "After years of figuring out that I was meant to be loved I started loving myself…including my skin."](https://carlyfindlay.com.au/2014/05/27/ichthyosis-awareness-month-brittanys-story-after-years-of-figuring-out-that-i-was-meant-to-be-loved-i-started-loving-myselfincluding-my-skin/) - There's an ongoing theme with these stories for the Ichthyosis Awareness Month Blog Project - and that's gratefulness towards the skin condition that has made life such a challenge. Brittany writes about her gratitude to Ichthyosis shaping her current outlook.She spent many years struggling with her Ichthyosis - especially coping with the taunts from other
- [Ichthyosis Awareness Month: Sami and Mason's story. "I ask of learn about Ichthyosis for fear my dad might actually be half crocodile."](https://carlyfindlay.com.au/2014/05/27/ichthyosis-awareness-month-sami-and-masons-story-i-ask-of-learn-about-ichthyosis-for-fear-my-dad-might-actually-be-half-crocodile/) - Sami writes of two generations of Ichthyosis in her family - her Dad and her son Mason. They both have X-Linked Ichthyosis.Reading her story of the stigma - perhaps self imposed - that her dad felt makes me so sad. There is often great shame in looking different, and also around leaving skin everywhere. I
- [Ichthyosis Awareness Month: Kallie, Jane and Kati's story. "We don't know anybody that is alive that has skin like me. I am extra extra extra special."](https://carlyfindlay.com.au/2014/05/25/ichthyosis-awareness-month-kallie-jane-and-katis-story-we-dont-know-anybody-that-is-alive-that-has-skin-like-me-i-am-extra-extra-extra-special/) - One of the best things about my stay in New Orleans was meeting Kallie, her Mum Kati and her grandmother who Kallie calls Gane. They made a two and a half hour trip to see me, and it was a lovely afternoon.Kallie is a sweet little girl. She and I played Tic Tac Toe (she's
- [Ichthyosis Awareness Month: Laura's story. "There will always be those who stare or say something offensive, but it’s easier to brush those off when you have positive interactions with others as well."](https://carlyfindlay.com.au/2014/05/25/ichthyosis-awareness-month-lauras-story-there-will-always-be-those-who-stare-or-say-something-offensive-but-its-easier-to-brush-those-off-when-you-have-positive-interactions-with-others/) - I first noticed Laura when she started posting a lot of wedding photos on Facebook! I was so excited for her - she made a beautiful bride.Laura's story continues the theme of living a 'normal' life - she has a job, friends and a husband, and her Lamellar Ichthyosis is secondary to this. She credits
- [Ichthyosis Awareness Month: Shawnee's story. "everyone was born with a purpose in life and NEVER GIVE UP!!"](https://carlyfindlay.com.au/2014/05/24/ichthyosis-awareness-month-shawnees-story-everyone-was-born-with-a-purpose-in-life-and-never-give-up/) - Meet another Shawnee. She's 14 years old and has articulated her experience of living with Ichthyosis so well. I really like how she and her parents have made a game of counting the amount of people who ask about her skin. Though really, a child should be subjected to these unrelenting intrusive questions from strangers.
- [Ichthyosis Awareness Month: Roxi and Michael's story. "You hear a lot of people say a lot of mean and ugly things about your baby and how you must be a bad mother."](https://carlyfindlay.com.au/2014/05/23/ichthyosis-awareness-month-roxi-and-michaels-story-you-hear-a-lot-of-people-say-a-lot-of-mean-and-ugly-things-about-your-baby-and-how-you-must-be-a-bad-mother/) - Roxi found me through last year's Ichthyosis Awareness Month Blog Project. I'm so glad she did!She writes about her son Michael, who has Congenital Ichthyosis form Erythroderma (the same as what I was diagnosed with at birth). He's 29 years old. Like many stories in the IAM Blog Project, Roxi and Michael's is one of
- [Ichthyosis Awareness Month: Maddy and a book giveaway.](https://carlyfindlay.com.au/2014/05/23/ichthyosis-awareness-month-maddy-and-a-book-giveaway/) - A wonderful writer and illustrator contacted me telling me about her book Maddy and Ma. Barbara Jarvis has written a book to support the dermatology department of the Princess Margaret Hospital for Children in Perth Australia. Barbara's grandchildren, Maddy (7) and Toby (5) have the erythrokeratoderma variabilis form of Ichthyosis - they're regular patients at
- [Ichthyosis Awareness Month: Adam's story. He's my love.](https://carlyfindlay.com.au/2014/05/22/ichthyosis-awareness-month-adams-story-hes-my-love/) - This is a story from Adam, my love. He writes about how his perception of beauty has changed since he met me.Life with me has been a learning curve for him - getting used to my skin, my temperature and the stares and comments from strangers. He's doing pretty well. Adam is so generous and
- [Ichthyosis Awareness Month: Sam's story. "Anyone with or without Ichthyosis has the right to achieve whatever they can and especially to just be themselves."](https://carlyfindlay.com.au/2014/05/21/ichthyosis-awareness-month-sams-story-anyone-with-or-without-ichthyosis-has-the-right-to-achieve-whatever-they-can-and-especially-to-just-be-themselves/) - Sam's story is one of difficulty - she's been challenged by both the medical and social aspects of Ichthyosis.Sam has a mix of Lamellar and Harlequin Ichthyosis which, throughout her life, has affected her eyes and ears. She's had numerous operations She's experienced a lot of bullying through her younger years, and what she has
- [Ichthyosis Awareness Month: Camilla and Logan's story. "I believe my toddler is most handsome young man at the park with the best personality ever."](https://carlyfindlay.com.au/2014/05/21/ichthyosis-awareness-month-camilla-and-logans-story-i-believe-my-toddler-is-most-handsome-young-man-at-the-park-with-the-best-personality-ever/) - Little Logan is adorable! I first came across him when his mum Camilla posted a picture of him in a tiger onesie on Facebook. The cuteness! Camilla and I have been in touch over the last year - she's asked me for advice around how to handle people's questions about Logan's appearance. I'm so glad
- [Ichthyosis Awareness Month: Ian's story. "I know bullies sound bad but I thank them because of them all I know what true friends are."](https://carlyfindlay.com.au/2014/05/20/ichthyosis-awareness-month-ians-story-i-know-bullies-sound-bad-but-i-thank-them-because-of-them-all-i-know-what-true-friends-are/) - I first started talking to Ian (though I know him as Pery) on Facebook at the start of this year. He is a regular contributor to the FIRST YAWI Facebook group. Ian struck me as a very smart, kind and fun loving teen. He's a senior in high school and has been preparing for the
- [Ichthyosis Awareness Month: Katie's story. "Let the world see your vulnerability and then let them watch while you make it your superpower."](https://carlyfindlay.com.au/2014/05/19/ichthyosis-awareness-month-katies-story-let-the-world-see-your-vulnerability-and-then-let-them-watch-while-you-make-it-your-superpower/) - Katie's this woman that everyone in the Ichthyosis community loves and looks up to. She's incredibly kind and smart, and is studying nursing. I've mentioned her in my International Women's Day post - she's going to Tanzania in June to intern as a student nurse! Her purpose in life is to help others. And from
- [Ichthyosis Awareness Month: meeting Evan.](https://carlyfindlay.com.au/2014/05/18/ichthyosis-awareness-month-meeting-evan/) - I was lucky enough to stay with DeDe, her husband Joe and Evan on my trip to America. They live in Connecticut - surrounded by woods - and sometimes the bears come out to play on bin night. I was sad I didn't see a bear! I did see snow for the first time though.
- [Ichthyosis Awareness Month: Shawnie's story. "Today I am done hiding and wishing for something different."](https://carlyfindlay.com.au/2014/05/17/ichthyosis-awareness-month-shawnies-story-today-i-am-done-hiding-and-wishing-for-something-different/) - I love Shawnie's story. The confidence she's developed despite all the adversity she's experienced is so heartwarming. I can relate to a lot of what she writes, especially the realisation of not needing to be invisible or wish my life was different. She has Netherton's Syndrome.Meet Shawnie Miller, a self proclaimed superhero."Like all kids do,
- [Ichthyosis Awareness Month: Tiffany, Matthew and Tynnan's story. "This is OUR normal! Welcome to normal."](https://carlyfindlay.com.au/2014/05/17/ichthyosis-awareness-month-tiffany-matthew-and-tynnans-story-this-is-our-normal-welcome-to-normal/) - Tiffany and I got in contact via an Facebook support group for Ichthyosis. She saw my teaser for Ichthyosis Awareness Month and asked how she could be involved. She sent me her story pretty much straight away.She's got two small children with Ichthyosis Vulgaris (IV). Tiffany believes she has Ichthyosis too - though she says
- [Ichthyosis Awareness Month: Mimi the pitbull's story. A dog with Ichthyosis.](https://carlyfindlay.com.au/2014/05/16/ichthyosis-awareness-month-mimi-the-pitbulls-story-a-dog-with-ichthyosis/) - A couple of months ago I received follow on Instagram from a dog called Mimi! I know! A dog using social media! I clicked onto the profile to discover Mimi is a dog with Ichthyosis! (FIRST has a page about dogs and Ichthyosis here.)And so I got in contact with Mimi via her owner, Shweta.
- [Ichthyosis Awareness Month: Cassie's story. "Someday I hope more people realize that the term NORMAL is not easily defined."](https://carlyfindlay.com.au/2014/05/15/ichthyosis-awareness-month-cassies-story-someday-i-hope-more-people-realize-that-the-term-normal-is-not-easily-defined/) - Cassie's story shows that the bullying she faced at school has stuck with her to this day, and she is more self conscious because of it. However she's very optimistic for her children's confidence - four of her children also have Ichthyosis. She's got Ichthyosis Bullosa of Siemens - her skin is very prone to
- [Ichthyosis Awareness Month: Sarah's story. " I think the hardest thing about Ichthyosis is explaining it to family members."](https://carlyfindlay.com.au/2014/05/14/ichthyosis-awareness-month-sarahs-story-i-think-the-hardest-thing-about-ichthyosis-is-explaining-it-to-family-members/) - Sarah is a mother of a little boy with Ichthyosis. Her family has X-linked Ichthyosis - where males display the symptoms.As she writes, Ichthyosis is a big learning curve with her children, even when it's been a big part of Sarah's life. Meet Sarah."Ichthyosis has always been in my life. My family has X-linked Ichthyosis.
- [Ichthyosis Awareness Month: Denise and Marc's story. "For every ignorant person, there was a kind one as well."](https://carlyfindlay.com.au/2014/05/13/ichthyosis-awareness-month-denise-and-marcs-story-for-every-ignorant-person-there-was-a-kind-one-as-well/) - Denise and I came into contact after I saw a feature with her, her son Marc and my friend - the amazing appearance activist hero Rick Guidotti. Rick took photos of Marc in his studio.Marc has Lamellar Ichthyosis, and from what I hear from Rick, he's an amazing young man.This piece is so moving. Like
- [Ichthyosis Awareness Month: Samantha's story. "three generations down you get to understand the condition in a way nobody else can."](https://carlyfindlay.com.au/2014/05/13/ichthyosis-awareness-month-samanthas-story-three-generations-down-you-get-to-understand-the-condition-in-a-way-nobody-else-can/) - Samantha's story of life with Ichthyosis is one about the condition being in three generations of her family. Her mother, her and her daughter. She has EHK.Samantha shows that personal experience and knowledge of this rare condition is so valuable. When her daughter was born, she knew exactly what to do. Samantha contacted me on
- [Ichthyosis Awareness Month: Erica's story. "I'm more than just skin, and I love who I am."](https://carlyfindlay.com.au/2014/05/12/ichthyosis-awareness-month-ericas-story-im-more-than-just-skin-and-i-love-who-i-am/) - After my Reddit experience, many people contacted me to tell me they too have Ichthyosis. I guess they saw my story and realised they're not alone - which was a really lovely thing to happen. Erica Clark was one of those people who wrote to me. We've been in touch ever since. She tells me
- [Ichthyosis Awareness Month: meeting Mellissa in San Francisco.](https://carlyfindlay.com.au/2014/05/10/ichthyosis-awareness-month-meeting-mellissa-in-san-francisco/) - I've met a number of people with Ichthyosis on my overseas trip. It has been an amazing experience - we are all helping each other.Mellissa and I have been in touch online since December last year. She posted the most amazing message about love in a Facebook group and I was drawn to her positivity
- [Ichthyosis Awareness Month: Autumn's story. "Since I made the conscious decision to use my skin disorder in aiding in my passion and dream, I see my Ichthyosis in a different light."](https://carlyfindlay.com.au/2014/05/10/ichthyosis-awareness-month-autumns-story-since-i-made-the-conscious-decision-to-use-my-skin-disorder-in-aiding-in-my-passion-and-dream-i-see-my-ichthyosis-in-a-different-light/) - Autumn's story is another one of positivity and celebrating her uniqueness. She is 20 years old, has Lamellar Ichthyosis and lives in Texas. She's a nursing student too.I love her sense of joy and lack of self pity. I do believe it's this sore of optimism that aids good health - resulting in manageable skin.Meet
- [Ichthyosis Awareness Month: Kelly's story. "I live life to the fullest! I view life with a different perspective."](https://carlyfindlay.com.au/2014/05/09/ichthyosis-awareness-month-kellys-story-i-live-life-to-the-fullest-i-view-life-with-a-different-perspective/) - Kelly got in contact with me on Instagram. I love how many people with Ichthyosis find each other through a picture and hashtag. She loves life - travelling, socialising, exercising, and spending time with her friends. When we first met on social media last year, she was about to travel to Australia. I love seeing
- [Ichthyosis Awareness Month: Terry's story. "Had I been born without ichthyosis, I would be an entirely different person."](https://carlyfindlay.com.au/2014/05/08/ichthyosis-awareness-month-terrys-story-had-i-been-born-without-ichthyosis-i-would-be-an-entirely-different-person/) - It's always a lovely surprise to get a message on Facebook from a blog reader who has Ichthyosis. There's a deep sense of connection and moments of empathy. Terry Bachman has been one of those readers. She's incredibly strong - developing her strength from her Ichthyosis, which has helped her to cope with deeper struggles.
- [Ichthyosis Awareness Month: Jeff's story. "“Treat him like you would a child who doesn’t have ichthyosis."](https://carlyfindlay.com.au/2014/05/07/ichthyosis-awareness-month-jeffs-story-treat-him-like-you-would-a-child-who-doesnt-have-ichthyosis/) - Jeff has been a friend of mine for years now - I'd say we've known each other since the mid 2000s. He has Lamellar Ichthyosis. We met in Brisbane in 2007 and talk regularly. I have been pestering Jeff to share his story on my blog for ages now - and he's finally succumbed. Jeff
- [Ichthyosis Awareness Month: Haley's story. " I will always wonder what normal feels like."](https://carlyfindlay.com.au/2014/05/07/ichthyosis-awareness-month-haleys-story-i-will-always-wonder-what-normal-feels-like/) - Haley has Confetti Ichthyosis - doesn't that sound pretty?!Her confidence is unwavering, despite the regular comments and stares she receives. The way she responds to others' reactions about her appearance - with humour and kind smiles - is commendable. There's an option to get angry and there's an option to ignore or respond with dignity.
- [Ichthyosis Awareness Month: The Foundation for Ichthyosis and Related Skin Types.](https://carlyfindlay.com.au/2014/05/06/ichthyosis-awareness-month-the-foundation-for-ichthyosis-and-related-skin-types/) - When I was in America I was lucky enough to meet with Moureen, Mo and Lisa from the Foundation for Ichthyosis and Related Skin Types (FIRST). DeDe and Evan came too! FIRST supports patients and families affected by Ichthyosis - connecting people, providing information and assisting with research. They have some really useful support groups
- [Ichthyosis Awareness Month: Darin's story. "Those with ichthyosis understand that they are visibly and tactilely different."](https://carlyfindlay.com.au/2014/05/05/ichthyosis-awareness-month-darins-story-those-with-ichthyosis-understand-that-they-are-visibly-and-tactilely-different/) - Darin writes a lot about touch - something I'm so interested in. When she sent me her story, I immediately empathised - I have thought about and written a lot about touch and skin hunger. This is such a beautiful, relatable piece of writing.Darin has Lamellar Ichthyosis.Meet Darin."Touch. Psychologists say it's the first language we
- [Ichthyosis Awareness Month: my Mum's story. "To all parents with children who have Ichthyosis, there is hope out there."](https://carlyfindlay.com.au/2014/05/05/ichthyosis-awareness-month-my-mums-story-to-all-parents-with-children-who-have-ichthyosis-there-is-hope-out-there/) - When I asked my Mum to write another piece for the Ichthyosis Awareness Month Blog Project, my brief for her was to give hope to new parents. I see so many parents worry for their child's future - it really must be a hard thing for a parent to face. While I am not a
- [Ichthyosis Awareness Month: thanks from Tina.](https://carlyfindlay.com.au/2014/05/04/ichthyosis-awareness-month-thanks-from-tina/) - One of the most moving stories that I've received has been Tina's story - shared here last July. Tina is an Indian woman with Lamellar Ichthyosis. Living with Ichthyosis in India is very difficult - the heat, the lack of medical treatment, difficulty in workplace support for disability, and the social fear around visible difference.
- [Ichthyosis Awareness Month: Neha and Alina's story. "People love giving suggestions without thinking every Mum will do her best for their baby."](https://carlyfindlay.com.au/2014/05/03/ichthyosis-awareness-month-neha-and-alinas-story-people-love-giving-suggestions-without-thinking-every-mum-will-do-her-best-for-their-baby/) - Neha is a new mum to little Alina who has Ichthyosis (EHK). She lives in Cairns, in tropical Australia. Her story shows the initial desperation of giving birth to a baby with such a rare and severe skin condition. Lives are turned upside down, and there can be strain on relationships.Neha also writes of how
- [Ichthyosis Awareness Month: Mason and Lisa's story. "This little boy has come into our lives and showed us that being different is ok, and that you will survive!"](https://carlyfindlay.com.au/2014/05/02/ichthyosis-awareness-month-mason-and-lisas-story-this-little-boy-has-come-into-our-lives-and-showed-us-that-being-different-is-ok-and-that-you-will-survive/) - I've been following Little Mason on Facebook for some time now. He's such a cutie! He's based in South Africa and his mum Lisa has written this for the Ichthyosis Awareness Month Blog Project. Mason is just over a year old and has Harlequin Ichthyosis. His mum, Lisa, writes about how his skin was so
- [Ichthyosis Awareness Month: Jaime's story. "It's important that these people come out and realize their self-worth and raise that self-esteem."](https://carlyfindlay.com.au/2014/05/01/ichthyosis-awareness-month-jaimes-story-its-important-that-these-people-come-out-and-realize-their-self-worth-and-raise-that-self-esteem/) - You might remember Jaime from last year's Ichthyosis Awareness Month Blog Project. She has Ichthyosis Vulgaris. Her story was one of coming out - before she read mine and others' stories of living with Ichthyosis, she was never comfortable to tell hers. Not even to those close to her. Since she shared her story on
- [Welcome to the 2014 Ichthyosis Awareness Month Blog Project! Celebrating your uniqueness.](https://carlyfindlay.com.au/2014/04/30/welcome-to-the-2014-ichthyosis-awareness-month-blog-project-celebrating-your-uniqueness/) - Welcome to the 2014 Ichthyosis Awareness Month Blog Project! Once again through the whole month of May I will be featuring guest posts on this blog from people affected by Ichthyosis. There are more than 30 stories this May - from patients, parents and grandparents, partners and even a non-human! Like last year, IAM Blog
- [Travel tales: an afternoon with Rick Guidotti in NYC. "Change how you see. See how you change."](https://carlyfindlay.com.au/2014/04/21/travel-tales-an-afternoon-with-rick-guidotti-in-nyc-change-how-you-see-see-how-you-change/) - While I was in New York I spent an afternoon with my good friend Rick Guidotti - former fashion photographer and founder of Positive Exposure. Rick shares the beauty in appearance diversity through photographs.I first met Rick in Melbourne when he was a guest and I was a judge of the Other Film Festival in
- [Travel tales: people watching in New York City](https://carlyfindlay.com.au/2014/04/19/travel-tales-people-watching-in-new-york-city/) - I've been catching public transport here in NYC. It's really cheap, safe and relatively quick and reliable (though the trains I catch aren't running this weeknd!). There are beggars on every train trip - while I wouldn't usually do this, I've been saving my coins to give to them. It's so cold here and I
- [Travel tales: giving New York City a second chance.](https://carlyfindlay.com.au/2014/04/17/travel-tales-giving-new-york-city-a-second-chance/) - I didn't like New York City as much as I hoped to when I came here last time. It was hot. Far too hot. The people were brash. I didn't enjoy BlogHer. And the food and shopping was disappointing. So I'm giving it another shot.I arrived in NYC yesterday. I spent a couple of hours
- [Travel tales: Connecticut in pictures](https://carlyfindlay.com.au/2014/04/16/travel-tales-connecticut-in-pictures/) - I've been staying with DeDe and her beautiful family these past few days. It's been a great stay - very relaxing. We've eaten some amazing food (Maine lobster!), seen some sights and laughed a lot. It's been snowing too - my first time experiencing snow! Here's some pictures as a teaser before I post more
- [Travel tales: talking to strangers](https://carlyfindlay.com.au/2014/04/13/travel-tales-talking-to-strangers/) - People watching - The Bean in Millennium Park, Chicago.One of the best things about travelling is meeting new people. Some have and will become good friends, and many others are nameless. I usually talk to people on public transport, much to the fear of some of my international friends. Being from Australia is a good
- [Travel tales: Kings of Leon in New Orleans](https://carlyfindlay.com.au/2014/04/12/travel-tales-kings-of-leon-in-new-orleans/) - I bought a ticket to last night's New Orleans Kings of Leon concert at last minute. It was a resale and it meant I got a front row seat. I sat in the massive arena and it was the most at home I'd felt in New Orleans (I found it really tough in that city).I
- [Travel tales - the drunks' reaction to Ichthyosis.](https://carlyfindlay.com.au/2014/04/11/travel-tales-the-drunks-reaction-to-ichthyosis/) - I hate reasoning with drunk people about my Ichthyosis. No amount of explaining that I was born like this, or am not sunburnt, or am ordinary not inspirational will sink in to their alcohol affected minds. Sadly, one of the things I remember most is when I walked to a cafe in Melbourne on a
- [Travel tales: my introduction to New Orleans](https://carlyfindlay.com.au/2014/04/10/travel-tales-my-introduction-to-new-orleans/) - I'm in New Orleans. I'm feeling love and hate at the same time for this city. It's posh and ramshackle, sweet and sewage scented, sunny then blustery. It's always noisy - the sweet sounds of jazz are always around the corner.I love the southern style food and the music. I love the sunny mild weather.
- [Travel tales: a restful stay in Chicago](https://carlyfindlay.com.au/2014/04/08/travel-tales-a-restful-stay-in-chicago/) - As I write this, I'm on the plane en route to New Orleans. Shut up! Wifi on the plane is so Beyond 2000. Who would have thought? My stay in Chicago was a restful one. I'm travelling for six weeks and cannot afford to push myself. And so I spent a lot of time in
- [Travel tales: Diving for pearls](https://carlyfindlay.com.au/2014/04/07/travel-tales-diving-for-pearls/) - I tend to get a little keepsake from each city I visit when I travel, it's usually a piece of jewellery. On my last day in San Francisco I realised all I'd done was eat, and other than sunglasses, a hat and scarf I'd bought to protect myself from the weather, I only had one
- [Travel tales: my last day in San Francisco - Pier 39, [he]artwork in Union Square and Grand Cafe](https://carlyfindlay.com.au/2014/04/06/travel-tales-my-last-day-in-san-francisco-pier-39-heartwork-in-union-square-and-grand-cafe/) - My last day in San Francisco was spent as a true tourist. I spent an hour at the laundromat reading tour brochures, and was scared by gunshots and a growling chihuahua. TheTenderloin District was an eye opener. Ted was lying face down in the gutter outside my hotel. He's really gotta kerb his habits.Carolyn picked
- [Travel tales: Haight, Dottie's, Stinson Beach and Boulevard.](https://carlyfindlay.com.au/2014/04/04/travel-tales-haight-dotties-stinson-beach-and-boulevard/) - A couple of months ago Darren Hayes and I were chatting on Twitter and I mentioned I was going to San Francisco. He lived in Sausalito for a number of years and so I knew he'd have a local's perspective of the city. I asked him for some tips, he asked me to email him,
- [Travel tales: my introduction to San Francisco - the Golden Gate Bridge, The Ferry Building and Alcatraz.](https://carlyfindlay.com.au/2014/04/02/travel-tales-my-introduction-to-san-francisco-the-golden-gate-bridge-the-ferry-building-and-alcatraz/) - I'm in San Francisco now! It's such a beautiful city, reminds me of Melbourne with its cool (very cold) weather, accessible public transport, friendly and eclectic mix of people and abundance of good food. I'm staying with Larisa and her housemates for now, until tomorrow when I'll go to a hotel and then meet up
- [Reflections on engagement.](https://carlyfindlay.com.au/2014/03/29/reflections-on-engagement/) - It's been a big week! I've felt all the feelings - particularly nostalgia and thoughts about family. An engagement and an international trip! My Mum said that the day I got engaged was the date of her late aunty's birthday - it's a special day for two reasons now. Ma Josie raised my Mum and
- [Ever after.](https://carlyfindlay.com.au/2014/03/25/ever-after/) - Last night my boy asked me to marry him. I said yes! I never dreamed I would be loved by anyone as much as he loves me. I thought i'd only be loved unconditionally by my parents. The love he shows me radiates from his face like sunbeams. He looks after me so well. He
- [On activism and speaking up. Does it make me the fun police?](https://carlyfindlay.com.au/2014/03/23/on-activism-and-speaking-up-does-it-make-me-the-fun-police/) - I'm pretty outspoken, saying what I think, telling people I don't agree, and reasoning why there's a different way of thinking. Just over the weekend I told a sales assistant who was glued to his phone while serving my Mum at the market that serving her is just as important as his phone call.
- [Miss Independent](https://carlyfindlay.com.au/2014/03/18/miss-independent/) - (Street art - Hosier Lane Melbourne, January 2014) When I started to go on dates with my boyfriend, I remember telling Tash that I just don't have time for a boyfriend. I guess it was one of the excuses I used to keep my heart safe. And it was also true - I have so
- [Busy. Sick. My body tells me to slow down. Impending travel.](https://carlyfindlay.com.au/2014/03/17/busy-sick-my-body-tells-me-to-slow-down-impending-travel/) - It's less than two weeks until I fly out. Holy shit I go overseas next week! Last week - though a short work week - I've felt the strain. I'm just so busy. There's my day job, writing commitments, speaking commitments to prepare for when I return in May, social outings, airline wrangling (oh God!),
- [The time I talked to Darren Hayes on his podcast.](https://carlyfindlay.com.au/2014/03/09/the-time-i-talked-to-darren-hayes-on-his-podcast/) - This morning my boyfriend set his talking alarm to the sound of "Wake up Carly it's time to call Darren Hayes". Say what? Call Darren Hayes? Well duh. He has his own talk show now - a podcast via Blog Talk Radio called Talk Talk Talk. The Internet grants us fans a whole new
- [Five women you should know about this International Women's Day.](https://carlyfindlay.com.au/2014/03/08/five-women-you-should-know-about-this-international-womens-day/) - It's International Women's Day today - this year's theme is 'inspiring change'. I've got many women in my life who I look up to - they are inspiring change - my mother, my many female managers over my career in my day job, my blogging colleagues, my mentors (thank you so much to Debra Cerasa
- [My skin hunger has been satisfied.](https://carlyfindlay.com.au/2014/03/02/my-skin-hunger-has-been-satisfied/) - I've written a lot about how my skin was hungry. Hungry for moisture, but also hungry for touch. For so long I yearned to be touched - dreaming of the times to come, remembering how long it had been since. Skin hunger is sensory deprivation, and it's proven to result in a failure to thrive.
- [Rare Disease Day 2014 - talking accessible services](https://carlyfindlay.com.au/2014/02/27/rare-disease-day-2014-talking-accessible-services/) - Sometimes I feel like such a small fish - almost literally, with all of my scales! Ichthyosis affects an estimated 10-20 individuals per million, and there are at least 20 varieties of the condition (source). It's no wonder I need to explain my condition to so many people I encounter - doctors, nurses, employers, service
- [Cooking is love](https://carlyfindlay.com.au/2014/02/25/cooking-is-love/) - If you follow my Instagram account, you'll see that I share LOTS of photos of food. I try to cook at least four nights a week. I've been happy cooking good food for myself for all these years, but now I've got someone to cook for and cook with. It's fun. Cooking is love. When
- [Rest in peace Charlotte Dawson.](https://carlyfindlay.com.au/2014/02/22/rest-in-peace-charlotte-dawson/) - Social media has put me in touch with so many people from all walks of life - some of these people have been celebrities that I chat to regularly on Twitter. This morning Charlotte Dawson was found dead in her Sydney home. Charlotte was often on the receiving end of online bullying. She attempted to
- [On being afraid to blog.](https://carlyfindlay.com.au/2014/02/20/on-being-afraid-to-blog/) - (source) Back in December, amidst the Reddit stuff, I was getting my boyfriend to moderate my blog comments because a few nasties were coming over - readers from the mainstream media I guess. I saw comments saying I'm seeking attention through telling my story, that I am faking Ichthyosis, and that I'm ugly and I
- [Valentines Day](https://carlyfindlay.com.au/2014/02/13/valentines-day/) - This is the first Valentines Day that I've ever properly celebrated. That I have celebrated truly with someone else. That I have ever celebrated in the commercial, cheesy, romantic way that Hallmark intended. My boy is taking me away to a five star hotel at a surprise destination for the weekend. We have bought
- [The Love Your Sister return](https://carlyfindlay.com.au/2014/02/13/the-love-your-sister-return/) - Today could have been a much different day. Connie Johnson's breast cancer prognosis meant she might not have been there to welcome her brother Samuel home as he unicycled into Federation Square. But she was there and they greeted each other with a hug that the thousands in Federation Square didn't want to end. Samuel,
- [A blog is a secret shared.](https://carlyfindlay.com.au/2014/02/09/a-blog-is-a-secret-shared/) - Blog readers tell me their secrets. Some of their secrets are public, posted on my blog commnts thread or on my Facebook page. Others are in a private message - they tell me they've got a lump in their throat just typing these words. Their words spill from their fingers like horses being let out
- [Do one thing that scares you everyday. Ice skating.](https://carlyfindlay.com.au/2014/02/04/do-one-thing-that-scares-you-everyday-ice-skating/) - I am often hesitant to do things that scare me. I am clumsy, accident prone and risk averse. I don't catastrophise but I am aware of my lack of coordination. So when my boy suggested we go ice skating to escape the heat on a 40 degree day over the weekend, I said yes and
- [Ichthyosis and exercise](https://carlyfindlay.com.au/2014/02/02/ichthyosis-and-exercise/) - For a long time (most of my life) I hated exercise. At school, it was all team sports, out in the sun with too many flies. There was swimming and running and I couldn't do either. It was competitive and a big part of the school curriculum and I was never good at it. I
- [A little update.](https://carlyfindlay.com.au/2014/01/30/a-little-update/) - I feel guilty for not blogging. Truth is, life gets in the way. I've got a few ideas in draft form, but I need to dedicate proper time to write. It's been an eventful couple of weeks! My boy bought me a ring, telling me he wants to be with me forever. Every day I
- [#abledpeoplesay](https://carlyfindlay.com.au/2014/01/21/abledpeoplesay/) - (Street art - Hosier Lane, Melbourne) Yesterday morning on Twitter I came across the #abledpeoplesay meme. There were statements highlighting the ignorance around both physicial disabilities, invisible illness and depression. And I took part straight away, sharing the funny, stupid and insulting things people have said about my skin. Some of these things have been
- [Ichthyosis is a big adjustment for a lover.](https://carlyfindlay.com.au/2014/01/13/ichthyosis-is-a-big-adjustment-for-a-lover/) - Since starting this relationship, I've had to see Ichthyosis, chronic illness and visible difference in layman's terms. From the perspective of someone who has been raised with good values and has a polite demeanour, yet never encountered such visible difference or chronic illness. When we first started talking online, he told me he was hesitant
- [How someone sees me.](https://carlyfindlay.com.au/2014/01/10/how-someone-sees-me/) - It took so long to reach the point where I didn't worry what others thought of me. I know who I am, am comfortable and confident with how I look and am actively educating people about what it's like to live with a visible difference and chronic illness. But then Reddit happened. And I've been
- [New Year's Eve/Studio 10 appearance](https://carlyfindlay.com.au/2014/01/02/new-years-evestudio-10-appearance/) - We're two days into 2014 now. Do you say "two thousand and fourteen" or "twenty fourteen"? How was your New Year's Eve? What did you do? Mine went a bit like this : In the morning I was interviewed by Ita Buttrose!!! (And Jessica Rowe, Sarah Harris and Joe Hildebrand.) Studio 10's producers emailed me
- [2013. You were a great year!](https://carlyfindlay.com.au/2013/12/30/2013-you-were-a-great-year/) - 2013 has been so good to me that I couldn't possibly end the year on a negative blog post. I've achieved so much stuff! Being published in big-time online publications. Received a writing mentorship and started a book proposal. Took up and actually enjoyed exercise. Worked with two great causes - Donate Life and Love
- [An open letter to Reddit's founders and administrators: protect the vulnerable.](https://carlyfindlay.com.au/2013/12/29/an-open-letter-to-reddits-founders-and-administrators-protect-the-vulnerable/) - My photo has been misused on Reddit it three times now. Its been dissected, discriminated against and threatened. This post isn't about giving the cruel Redditors attention, me seeking attention or whoring myself to the media as some have suggested. It's not about ignoring it or pretending it isn't happening - because it is. It
- [This is love.](https://carlyfindlay.com.au/2013/12/27/this-is-love/) - This boy, he told me he can't love me any more because his heart is too full with his love for me. My heart melts. (I have been so reluctant to make a photo of him and I public, especially with this recent (cough) internet fame, but he's given me permission to do so.)I'm not an
- [Gone viral.](https://carlyfindlay.com.au/2013/12/22/gone-viral/) - I have had some time to reflect on the past few days. Wow. Just wow. My post about being ridiculed on Reddit went viral. I was featured on The Daily Dot, News Limited, Mamamia, Yahoo, HLNTV (I did that phone interview at 5.45 am Friday morning)!, CNN Espanol, Fox and The Daily Mail, plus a
- [How to win the Internet. Or how to defend yourself when your photo is ridiculed on Reddit.](https://carlyfindlay.com.au/2013/12/19/how-to-win-the-internet-or-how-to-defend-yourself-when-your-photo-is-ridiculed-on-reddit/) - I was going to write a rant. But I'm tired. Plus it's better to be nice in situations like these. And I can't take on any more of the Internet today. This morning I discovered, through my blog statistics, that someone had posted a picture of me (above) on Reddit, in the WTF thread. You
- [Busy. And a blog birthday!](https://carlyfindlay.com.au/2013/12/16/busy-and-a-blog-birthday/) - I'm so busy. I hate complaining that I'm busy, because being busy is a privilege. Being busy means there's something to live for, something to be done, progress to be made. There's so much to do! There's the day job, dinners out, bands to watch, drinks to be had, writing contracts to be signed,
- [Peach and strawberry pie](https://carlyfindlay.com.au/2013/12/10/peach-and-strawberry-pie/) - I made an amazing white peach and strawberry pie last weekend. So amazing that my boy licked his plate. I felt like a summer fruit pie on the first day of summer, and I had a few ripe fruits on hand. I made this pie with what I had in the pantry, fridge and fruit
- [32](https://carlyfindlay.com.au/2013/12/08/32/) - I turned 32 yesterday. 32 seems like such a sensible age. Grown up. And so I bought myself some handmade porcelain cups. Because they signify 32 - the age one should have nice cups to drink from. No more discount tumblers or mismatched wine glasses. I also bought that floral dress. 32 is sophisticated. I
- [Someone who loves me.](https://carlyfindlay.com.au/2013/12/05/someone-who-loves-me/) - I think I was at the Matchbox Twenty concert last year when these lyrics first cut me: "I don't know if I've ever really been loved by a hand that's touched me". Why hadn't those lyrics resounded before, when I've played Push over and over since 1997? And why was I only realising that
- [Disability has meant finding my tribe.](https://carlyfindlay.com.au/2013/12/02/disability-has-meant-finding-my-tribe/) - While disability comes in different forms, I have found there's a collective sense of empathy in the disability community. Putting my condition in a box - ticking that box 'yes I have a disability' - has been more empowering than I imagined it could be. I never identified with any words to describe my
- [Voices of 2013. Overnight success.](https://carlyfindlay.com.au/2013/12/01/voices-of-2013-overnight-success/) - On Friday night I went to the Voices of 2013 party. It was wonderful to see so many bloggy friends again - I swear the friendship is the best thing about blogging. Everyone was so very lovely on Friday night - gosh it was good to see these ladies (and very few men) over champagnes
- [Life lately](https://carlyfindlay.com.au/2013/11/24/life-lately/) - Life's good. And I have writer's block. Does this happen to you too? Does your writing flow stop when your life feels full? I saw Paul Kelly talk about songwriting and play a few songs yesterday. He's so smart, funny and generous. It was a privilege to see him in an intimate setting. He said
- [I won a Yooralla Media Award!](https://carlyfindlay.com.au/2013/11/21/i-won-a-yooralla-media-award/) - On Tuesday and Wednesday of this week I was in Canberra for a very special event. My Mum was my guest. I was one of the winners of the Yooralla Media Awards. The awards were held at the National Press Club, and hosted by The Project's Charlie Pickering. The awards were attended by the shadow
- [On 'normal' and cures and pride.](https://carlyfindlay.com.au/2013/11/19/on-normal-and-cures-and-pride/) - Sometimes people compliment me when my skin looks paler than usual. It's as though I'm five shades closer to a white complexion. (Ichthyosis-less, my South African heritage would probably mean that I'd have pale brown skin.) What they're not seeing (or feeling) is the pain on other parts of my body and the itching. And
- [Relationship status.](https://carlyfindlay.com.au/2013/11/17/relationship-status/) - I've got a boyfriend. After quite a bit of thinking (and a little hesitation) on my part, and lots of persistence on his, we have decided to make a go of this. It's nice. He's so different to me - which perhaps was a part of my hesitance - but the important thing is his
- [Appearance diversity: Andy Jackson - a body shaped like a question mark.](https://carlyfindlay.com.au/2013/11/14/appearance-diversity-andy-jackson-a-body-shaped-like-a-question-mark/) - I've known Andy Jackson for around nine years now. I used to perform poetry in cafes and pubs in Melbourne and he was either organising the event or performing poetry, or both. He's an accomplished and celebrated poet - published in Australian and international publications, his book of poems was shortlisted for the 2010 NSW
- [The Undateables - creating awareness or stigma around disability and relationships?](https://carlyfindlay.com.au/2013/11/10/the-undateables-creating-awareness-or-stigma-around-disability-and-relationships/) - When you have a visible difference or a disability, you may spend a lot of time noticing how society reacts to you looking different to the masses. There's curiosity, exclusion, horror, patronisation, encouragement, inclusion, rudeness, surprise, honesty, fear, ridicule, and great compassion and kindness. I think I've experienced the full range of human reaction living
- [Conversations with creatives - M'agapi](https://carlyfindlay.com.au/2013/11/07/conversations-with-creatives-magapi/) - When I was at the Finders Keepers market in early October, I came across a stall with the most beautiful dresses, perfect for a spring wedding, a high tea or even the races. The brand was M'agapi. In my post market research, I saw that the brand sources fabrics from local Melbourne industries, as well
- [Ten things I learned about furthering my speaking career at Problogger](https://carlyfindlay.com.au/2013/11/05/ten-things-i-learned-about-furthering-my-speaking-career-at-problogger/) - I went to the speakers session at Problogger because honestly, I'd like to expand my speaking career. One of the things I'm hesitant about is negotiating a fee - I never know how much to charge, what others are charging, and whether, if I am speaking at an event for a cause, it's fair to
- [I am writing a book. A fellowship with Writers Victoria and Arts Access Victoria.](https://carlyfindlay.com.au/2013/11/03/i-am-writing-a-book-a-fellowship-with-writers-victoria-and-arts-access-victoria/) - A few weeks ago I was thrilled to receive the news that I'd been successful in my application for a Write-ability fellowship with Writers Victoria and Arts Access Victoria. I am being mentored by Sam Twyford-Moore, the director of the Emerging Writers Festival. I have two goals for this fellowship: to get started writing a
- [Mary Meets Mohammed - interview with the filmmaker.](https://carlyfindlay.com.au/2013/10/31/mary-meets-mohammed-interview-with-the-filmmaker/) - Every so often I watch Compass on ABC - it's a program about religion. I love it because it shows people doing good for the community, and explores many cultures. My Dad and I somehow got talking about religion, and we both recommended that each other watch Compass. Turns out we both do! Dad told
- [When empathy hurts. Seeing skin conditions on screen](https://carlyfindlay.com.au/2013/10/29/when-empathy-hurts-seeing-skin-conditions-on-screen/) - A friend sent me a link to a documentary called My Skin is Killing Me - it's about two people with severe skin conditions - a young American boy with Epidermolysis Bullosa, and a young Chinese man with Ichthyosis. It showed the medical and social pain of living with these conditions. Payton, the five year
- [Appearance diversity: Scary face at Halloween](https://carlyfindlay.com.au/2013/10/27/appearance-diversity-scary-face-at-halloween/) - (source - Picture by Quentin Blake, from Roald Dahl's Witches) When I was a small child, about three years old, I had a Snow White doll and a wicked stepmother doll. Snow White, of course, was beautiful - pale skin, ebony hair and a yellow and blue silk (probably highly flammable nylon) dress with
- [Appearance diversity: Living Without Skin - Life with Epidermolysis Bullosa.](https://carlyfindlay.com.au/2013/10/24/appearance-diversity-living-without-skin-life-with-epidermolysis-bullosa/) - I first met Nikki online when she read my blog back in 2011. I think she left me a comment and I contacted her by Facebook. Nikki has a rare, extremely severe skin condition called Epidermolysis Bullosa (EB). Her condition is evidence of just how much skin affects the body's functions - her skin is
- [Chase that feeling](https://carlyfindlay.com.au/2013/10/22/chase-that-feeling/) - "And I’m a chase that feeling,Take that pain and replace that feeling,And I’m a take that healing then,Stand so tall they’ll have to raise that ceiling man....It’s got a hold on me, and I’m a chase that feeling,Chase that feeling"~ Chase that Feeling, The Hilltop Hoods Words I thought I'd never utter: I can't wait
- [Things I haven't told you about my Ichthyosis.](https://carlyfindlay.com.au/2013/10/20/things-i-havent-told-you-about-my-ichthyosis/) - I was chatting to Pip Lincolne and Alex Brooks (from Kidspot) at the world's best breakfast buffet (QT hotel on the Gold Coast) and somehow the conversation came to the funny things that happen because of my Ichthyosis. I think it was because I couldn't open a bottle or something - I had to ask
- [Conversations with a Creative - Rulitos](https://carlyfindlay.com.au/2013/10/17/conversations-with-a-creative-rulitos/) - This is the first of my Conversations with a Creative series. I'm a big fan of handmade, especially jewellery, and I wanted to explore the creative process with the artist and showcase their products on my blog. Today is my friend Nerea Li Santi, who has a jewellery brand called Rulitos. I came to know
- [Educating girls: Malala Yousafzai, I Am A Girl and Girl Rising.](https://carlyfindlay.com.au/2013/10/15/educating-girls-malala-yousafzai-i-am-a-girl-and-girl-rising/) - I'm in awe at how passionate activist, 2013 Nobel Prize nominee and survivor, Malala Yousafzai is about educating herself and ensuring all children are educated. She believes education is the key to peace - the key to changing the world. Shot in the face by the Taliban in 2012, she said "I don't want revenge
- [I don't want to be someone's heroic choice or the person they were too afraid of getting to know.](https://carlyfindlay.com.au/2013/10/13/i-dont-want-to-be-someones-heroic-choice-or-the-person-they-were-too-afraid-of-getting-to-know/) - A friend told me that looking different is a pretty good dickhead filter. I've also found that barriers for people who look different or with disabilities are as much about other people's attitudes as a lack of ramps, captioning and sign language. Last week I got a message via my online dating profile. I never
- [The Step Changer panel at the Problogger Event - "Going beyond what everyone else is doing is what brings success."](https://carlyfindlay.com.au/2013/10/10/the-step-changer-panel-at-the-problogger-event-going-beyond-what-everyone-else-is-doing-is-what-brings-success/) - (Pic via Mrs CeeCee) My favourite session at the Problogger Event (pbevent) was the discussion between three of the nicest ladies in the blogging business - Andrea from Fox in Flats, Caz from yTravel Blog and Christina from Hair Romance. Their session was called 'The Step Changers' and covered the steps (read: HARD WORK) that
- [A letter to little ones born with Ichthyosis or a visible difference. A letter to little Me.](https://carlyfindlay.com.au/2013/10/08/a-letter-to-little-ones-born-with-ichthyosis-or-a-visible-difference-a-letter-to-little-me/) - Dear all the little ones born with Ichthyosis or a visible difference, and dear little Me: I want you to know that it will be ok. Life will be ok. Wonderful even. There's a long journey ahead of you, with your daily care regime, specialist appointments and therapy. It will be hard - people
- [Appearance diversity: Robert Hoge is comfortable being ugly](https://carlyfindlay.com.au/2013/10/06/appearance-diversity-robert-hoge-is-comfortable-being-ugly/) - A couple of months ago people were asking me if I'd read Good Weekend - the issue where The Two of Us was a story about a man with a visible difference and his Dad. I had not seen it, but my parents and a Twitter contact posted it to me. Several weeks later my
- [Stuff I love: Tim Minchin's Occasional Address - and more](https://carlyfindlay.com.au/2013/10/05/stuff-i-love-tim-minchins-occasional-address-and-more/) - This is the stuff I love at the moment: I am such a fan of Tim Minchin. He's a brilliant creative mind, a writer I admire. I feel lucky to have seen Matilda The Musical in London - a stage play he wrote and directed. I met him twice - once at the taping of
- [Exercise. I am titanium.](https://carlyfindlay.com.au/2013/10/03/exercise-i-am-titanium/) - Sometimes I tell the world something to keep myself accountable, or to help my goals happen. I've done this in two forms this past week - things are happening and I feel great! It's also helping my steps to positive life change. I wrote last week that I had been to the gym for the
- [Julia Gillard in conversation with Anne Summers: "You have a decision to make: you could have a crap rest of your life", [or you can move on].](https://carlyfindlay.com.au/2013/10/01/julia-gillard-in-conversation-with-anne-summers-you-have-a-decision-to-make-you-could-have-a-crap-rest-of-your-life-or-you-can-move-on/) - Last night I saw Julia Gillard - Australia's first female Prime Minister - in conversation with Anne Summers at the Melbourne Town Hall. She and Anne spoke for 50 minutes and the audience asked a variety of questions for the remainder. It was her second extended interview since losing the Prime Ministership. People queued early
- [Trey Ratcliff's keynote at Problogger: "Stop worrying what others think", Trey told us. "Be yourself. People that should be in your world will come into your world."](https://carlyfindlay.com.au/2013/09/29/trey-ratcliffs-keynote-at-problogger-stop-worrying-what-others-think-trey-told-us-be-yourself-people-that-should-be-in-your-world-will-come-into-your-world/) - (source) There was a guy at the Problogger Event wearing Google Glass. He talked about what they can do - make him see and interact with the internet using his voice, ear, eye and brain. This is the future and we are in it. Amy Porterfield, Facebook marketing extraordinaire, said Google Glass is like having
- [What I see when I look in the mirror - for the What I See Project](https://carlyfindlay.com.au/2013/09/26/what-i-see-when-i-look-in-the-mirror-for-the-what-i-see-project/) - Sometimes I wonder whether people with visible differences and disabilities are not expected to be happy with our appearance. That we should feel ashamed. We should want to and try to change how we look. We should seek a cure, or at least something to cover up that unsightly... Why should we want to go
- [Fundraising update: Wrap Tina With Love.](https://carlyfindlay.com.au/2013/09/25/fundraising-update-wrap-tina-with-love/) - Overnight the fundraising effort for Tina topped $1000! Our target was $300. This generosity and kindness has blown me away. So many people have made donations that will go a long way, and so many people have shared Tina's story and link to her donation page. Thank you for raising funds and awareness. These funds
- [A cause for you to consider: Wrap Tina With Love - Tina's story continued.](https://carlyfindlay.com.au/2013/09/24/a-cause-for-you-to-consider-wrap-tina-with-love-tinas-story-continued/) - A couple of months ago, the beautiful Tina shared her story of living with Ichthyosis in India on my blog. Her story was heartbreaking - and many of you were moved by her words. Here's an excerpt of Tina's story in her own words: "At the age of 5 all children started to go
- [Getting into my comfort zone after the Problogger Event - read: seeing a band. #pbevent](https://carlyfindlay.com.au/2013/09/23/getting-into-my-comfort-zone-after-the-problogger-event-read-seeing-a-band-pbevent/) - There was a bit of talk about getting out of your comfort zone at the Problogger Event. Darren Rowse said “getting out of your comfort zone is when sparks fly”. He talked about the people you meet and the opportunities that arise when you push yourself into doing something you may be a little afraid
- [Debt. AKA the really vulnerable blog post.](https://carlyfindlay.com.au/2013/09/22/debt-aka-the-really-vulnerable-blog-post/) - At Problogger (I know, lately all of my blog posts begin with that sentence - it's just because I was SO inspired!), Darren Rowse and other guest speakers like Andrea from Fox in Flats and Caz from Y Travel Blog talked of being brave and publishing a post that reveals something really personal about yourself
- [The weekend: pizza, a blogging class, a movie and lunch with new friends.](https://carlyfindlay.com.au/2013/09/22/the-weekend-pizza-a-blogging-class-a-movie-and-lunch-with-new-friends/) - I've been quite sore this weekend - with Friday spent resting and much of Saturday and Sunday doing a little more of the same. I made pizza for dinner on Friday night - I bought this dough already made up from my local bakery and it rose to the size of a football. And it
- [What I learnt about digital content creation at the Problogger Event #pbevent](https://carlyfindlay.com.au/2013/09/19/what-i-learnt-about-digital-content-creation-at-the-problogger-event-pbevent/) - (source) One of the big takeaways I got at the Problogger Event was that us bloggers are all content creators, and that it’s really easy to value-add onto the content we’ve already created (our blogs, duh!). Years ago, it was very expensive to create digital content, but now it’s become much cheaper, though quite
- [Nine awesome people I met at the Problogger Event #pbevent](https://carlyfindlay.com.au/2013/09/18/nine-awesome-people-i-met-at-the-problogger-event-pbevent/) - I met lots and lots of people at the Problogger Event. There were simply too many to be able to meet everyone, but the people I did meet were all wonderful. Here’s just a few of the people I have come to know through Problogger (and some online prior to the conference), and think you
- [Problogger Event part one - daring to dream with Clare
Bowditch #pbevent (and I was published on The Guardian!)](https://carlyfindlay.com.au/2013/09/17/problogger-event-part-one-daring-to-dream-with-clarebowditch-pbevent-and-i-was-published-on-the-guardian/) - Last week I went to the Problogger Training Event on The Gold Coast in Queensland.It was a fantastic working holiday. I'm not rested but I am inspired, motivated and assured that dreams are allowed and very possible. My blogging colleagues and friends just got it. Blogging is a thing, its valid and it can lead
- [Walking Alongside Someone With A Visible Difference](https://carlyfindlay.com.au/2013/09/15/walking-alongside-someone-with-a-visible-difference/) - It seems the more people I meet, and the more friends I make, the more I am reminded that people do treat me both normally and differently. Almost all of the new people who come into my life comment on how much they notice the staring. I never realised staring is that prominent until people
- [OMG! America - Europe 2014!!](https://carlyfindlay.com.au/2013/09/12/omg-america-europe-2014/) - So... I booked a round the world air ticket for March - May 2014. I fly from Melbourne to Auckland to San Francisco - and then I'll see more of America - perhaps New Orleans - then New York, across to Milan and London via Paris or Spain. I head back to Melbourne via a
- [R U OK? Day 2013: my friend Lucy's story.](https://carlyfindlay.com.au/2013/09/11/r-u-ok-day-2013-my-friend-lucys-story/) - I asked my friend Lucy to write today's post. Lucy and I have been friends for about 15 years - we met through the Savage Garden Fanzine - we became penpals and have kept in touch by letter, then phone and online. We've met a few times in person too. For a little while, I
- [On unwanted prayer and pity (or misplaced good intentions).](https://carlyfindlay.com.au/2013/09/10/on-unwanted-prayer-and-pity-or-misplaced-good-intentions/) - I'm on holidays. A staycation now and a short vacation tomorrow. It's been nice - I've done some writing and pitching, some travel planning, some cleaning, and some napping. I've also been trying to exercise regularly - going for walks and doing squats and sit-ups. I walked to the post office and back yesterday -
- [Appearance diversity: Ashton's story - a little boy with Sturge Weber syndrome."We're happy to explain and educate but it's people's rudeness that really bothers us."](https://carlyfindlay.com.au/2013/09/08/appearance-diversity-ashtons-story-a-little-boy-with-sturge-weber-syndrome-were-happy-to-explain-and-educate-but-its-peoples-rudeness-that-really-bothers-us/) - A little while ago I was tweeted at by Ashely Ide, a British man, raising awareness about visible difference. His son Ashton, has Sturge-Weber syndrome - which means he has a large birthmark to 85% of his face. This syndrome also causes seizures. Ashley has written a book to educate children about visible differences -
- [I don't want to spend time doing stuff that is not fun.](https://carlyfindlay.com.au/2013/09/05/i-dont-want-to-spend-time-doing-stuff-that-is-not-fun/) - When you do things that are fun, it doesn't seem like work. I recently heard two influential writers - Tavi Gevinson and Khairani Barokka - talk about only wanting to do things that are fun in life. Perhaps to a non-creative, this idea sounds a little immature and selfish, and dare I say it, a
- [On (not) blogging about matters of the heart.](https://carlyfindlay.com.au/2013/09/03/on-not-blogging-about-matters-of-the-heart/) - The more I blog, the more I keep to myself. In my experience (and also of other bloggers I know), being open and vulnerable is what draws readers in. Readers resonate with what they relate to, I guess. For me, blogging has moved from a diary structure ("today I went to...I did this...I felt
- [Experience relayed from patient to parent.](https://carlyfindlay.com.au/2013/09/01/experience-relayed-from-patient-to-parent/) - A couple of weeks ago I met baby Matilda and her mum Cheryle at the Royal Children's Hospital. Cheryle and I have become friends very recently - Matilda is a newborn baby with Ichthyosis. Cheryle has been reading my blog for a while, after a search for Ichthyosis support groups. She's connected with a lot
- [A little taxi driver update and a request.](https://carlyfindlay.com.au/2013/08/27/a-little-taxi-driver-update-and-a-request/) - One of the outcomes I requested after being verbally abused in a taxi in July was that all drivers receive ongoing disability awareness training. I don't want them to receive training on entering employment, but at regular intervals, and I'd also like all offending drivers to receive training immediately after a report is made. I
- [Tavi Gevinson at Melbourne Writers Festival 2013: a wondrous
conversation.](https://carlyfindlay.com.au/2013/08/25/tavi-gevinson-at-melbourne-writers-festival-2013-a-wondrousconversation/) - "Meaning lies in the magic of the coincidence that you should come across work at just the right time."~ Tavi Gevinson at Melbourne Writers Festival 2013(source) I have spent the weekend soaking up inspiring conversations at the Melbourne Writers Festival. The weekend started with Tavi Gevinson's keynote and interview with Estelle Tang at the Athenaeum
- [The wind brings change.](https://carlyfindlay.com.au/2013/08/22/the-wind-brings-change/) - It's been horribly windy in Melbourne these past few weeks. It's cold too, rainy most days, and the sun struggles to pierce the grey. Metal mimics the weight of plastic, sturdy objects are blown a few feet off the ground. Wind is tiring, freezing, mood altering. I even think inanimate objects are weary of the
- [Hope and resilience](https://carlyfindlay.com.au/2013/08/20/hope-and-resilience/) - (source) It's hard to describe the pain of sore skin. It's burning, throbbing, restricting, drying and weeping simultaneously, inflamed, scraping, papery, raw. The pain chips away at my emotional armour, making me thin skinned figuratively and literally. There's days spent in bed resting at home and having salt baths and Panadol, or days spent in
- [[Video] Samuel Johnson gives an update on Love Your Sister](https://carlyfindlay.com.au/2013/08/18/video-samuel-johnson-gives-an-update-on-love-your-sister/) - Last Friday I caught up with Samuel Johnson from Love Your Sister while he's spending some time in Melbourne. You may remember my interview with him earlier in the year before he set off on an epic unicycle ride around Australia, raising money for and awareness of breast cancer. That is 15,000 km and a
- [Songs of influence](https://carlyfindlay.com.au/2013/08/15/songs-of-influence/) - It’s been my life-long dream to go on radio and play my favourite songs, especially Savage Garden - and last Thursday I did it! I was so excited to have been invited onto Are You Looking At Me? on 3CR - it's a conversation show about equality and difference, with conversations about disability and also
- [The death of Offspring's Dr Patrick Reid. The TV death that stopped a
nation.](https://carlyfindlay.com.au/2013/08/14/the-death-of-offsprings-dr-patrick-reid-the-tv-death-that-stopped-anation/) - (Source) Patrick Reid died last week. He was hit by a car, initially sustaining some grazing to the elbow and minor dizziness. Then, in his partner, Nina's car, on the way to hospital, his speech slurred and he passed out. He was taken into emergency surgery but there was nothing doctors could do for him.
- [Introducing Nathalie from Easy Peasy Kids: a BUPA Health Influencer award winner](https://carlyfindlay.com.au/2013/08/13/introducing-nathalie-from-easy-peasy-kids-a-bupa-health-influencer-award-winner/) - The winners of the BUPA Health Influencer blog awards are fantastic people, and I am proud to be in their company. I want to introduce you to them each week, and I encourage you to read their blogs. They've all made a positive difference in their communities and also in their own lives. Nathalie from
- [Zac and Mia by AJ Betts: friendship formed on the hospital ward -
Interview with the author and a giveaway.](https://carlyfindlay.com.au/2013/08/12/zac-and-mia-by-aj-betts-friendship-formed-on-the-hospital-ward-interview-with-the-author-and-a-giveaway/) - A few weeks ago I listened to a Life Matters podcast that featured an interview with young adult fiction author Amanda (AJ) Betts. She spoke to Natasha Mitchell about her latest release, Zac and Mia. AJ Betts is an author and a teacher on a hospital ward in Perth. The book is about the strong
- [When Mum comes to town (we eat a lot of great food).](https://carlyfindlay.com.au/2013/08/11/when-mum-comes-to-town-we-eat-a-lot-of-great-food/) - Last weekend Mum came to stay. We got a fair bit of stuff done around my house, but most of the time was spent eating. And teaching Mum how to use social media (Twitter, Instagram and the art of the selfie). It's so good having a foodie Mum - we spend a lot of
- [One conversation creates change. Another post on Embarrassing Bodies.](https://carlyfindlay.com.au/2013/08/08/one-conversation-creates-change-another-post-on-embarrassing-bodies/) - Embarrassing Bodies was on the TV last night. I didn't watch it, a friend texted me to tell me it was on. I replied that I think the title is offensive, the content's exploitative and the viewers' reactions are callous, but thanks for thinking of me. I wrote about how I feel about the show
- [What I know about conversations](https://carlyfindlay.com.au/2013/08/07/what-i-know-about-conversations/) - (Source)I love talking to people - to friends, to strangers. It's great getting to know someone, to hear how they pronounce words and listen to their laugh. When I was in England I'd try to talk to someone new on the train every day. The friends I stayed with freaked out because I was
- [Introducing Sandra from $120 Food Challenge: A BUPA Health Influencer award winner](https://carlyfindlay.com.au/2013/08/06/introducing-sandra-from-120-food-challenge-a-bupa-health-influencer-award-winner/) - The winners of the BUPA Health Influencer blog awards are fantastic people, and I am proud to be in their company. I want to introduce you to them each week, and I encourage you to read their blogs. They've all made a positive difference in their communities and also in their own lives. Today I
- [Retreating from the blog.](https://carlyfindlay.com.au/2013/08/04/retreating-from-the-blog/) - (That picture is ironically giving more away about me than this blog post suggests. Note - I was playing dress ups with Mum's glasses (my vision is 20/20), and no one ever sees me in my dressing gown. You are now.) When I blog, I look inside myself. I reach for the shiny bits, the
- [Weakness.](https://carlyfindlay.com.au/2013/08/01/weakness/) - "And I wonder when I sing along with you, if everything could ever feel this real forever. If anything could ever be this good again?"~ Foo Fighters, Everlong I'm the sort of woman who wants to have all my shit together, emotionally speaking. I feel confident that I do a lot of the time,
- [Introducing Neil from Bushwalking Blog: a BUPA Health Influencer award winner](https://carlyfindlay.com.au/2013/07/30/introducing-neil-from-bushwalking-blog-a-bupa-health-influencer-award-winner/) - The winners of the BUPA Health Influencer blog awards are fantastic people, and I am proud to be in their company. I want to introduce you to them each week, and I encourage you to read their blogs. They've all made a positive difference in their communities and also in their own lives. Today's post
- [Stuff I love - #2](https://carlyfindlay.com.au/2013/07/29/stuff-i-love-2/) - It's been a while since I last did Stuff I Love. I had hoped to make this a regular habit, but there's been lots happening. Anyway, here are a few things I hope you love too. (Note - I didn't so much love doing this quick post - I was back reliving my uni days
- [Ichthyosis Awareness: Tina's story - "The college discouraged me from
being a doctor, stating that I being abnormal will not be able to do
it. "](https://carlyfindlay.com.au/2013/07/28/ichthyosis-awareness-tinas-story-the-college-discouraged-me-frombeing-a-doctor-stating-that-i-being-abnormal-will-not-be-able-to-doit/) - I promised to continue to share stories about personal journeys with Ichthyosis on my blog even though Ichthyosis Awareness Month is over. My blog is open to anyone affected by Ichthyosis to share their story - please contact me if you want to publish your story here. Today Tina shares her story. She has Lamellar
- [Not well. Fandom.](https://carlyfindlay.com.au/2013/07/25/not-well-fandom/) - I'm not well. Everything has collided and now I have sorer-than-usual skin. The pain is hard to describe - it's throbbing and tiring, and wears at my emotional armour. I'll be ok soon - I always am. This month has definitely shown that stressful situations (and even excitement) can play havoc with the body's balance.
- [Introducing Lee from Supercharged Food: a BUPA Health Influencer award winner.](https://carlyfindlay.com.au/2013/07/23/introducing-lee-from-supercharged-food-a-bupa-health-influencer-award-winner/) - The winners of the BUPA Health Influencer blog awards are fantastic people, and I am proud to be in their company. I want to introduce you to them each week, and I encourage you to read their blogs. They've all made a positive difference in their communities and also in their own lives. My first
- [On people chasing and just doing my thing.](https://carlyfindlay.com.au/2013/07/21/on-people-chasing-and-just-doing-my-thing/) - (Picture of quote in latest issue of Renegade Collective) Until recent years, I was a people chaser. I spent a lot of time wondering why people didn't want to hang out with me, and more time getting upset at this. While it may have been a case of them really not wanting to spend time with
- [A trip to hospital in the ambulance. Pride of Australia nomination.
Pretty treats.](https://carlyfindlay.com.au/2013/07/20/a-trip-to-hospital-in-the-ambulance-pride-of-australia-nomination-pretty-treats/) - What a strange fortnight - it's been a whirlwind of good and not so good events! I wanted a calmer week this past week, and for the most part it has been, except on Monday night when I had to go to hospital by ambulance because I had a reaction to my delicious seafood dinner.
- [Meeting Valerie and Stephane - also affected by Ichthyosis.](https://carlyfindlay.com.au/2013/07/16/meeting-valerie-and-stephane-also-affected-by-ichthyosis/) - On Monday I wrote how blogging builds and strengthens communities. My blog brings people together. I've come into contact with many people with, or parents of children with Ichthyosis through writing here. Last year while overseas I met Jack and his parents, and also DeDe. I also keep in contact with many people affected by
- [I won a BUPA Health Influencer blogging award!](https://carlyfindlay.com.au/2013/07/14/i-won-a-bupa-health-influencer-blogging-award/) - "I know we're all supposed to be confident in our self-worth without looking for the approval of others, but to have someone else like you and think you're special is so super powerful it makes me shake."~ Neil Kramer On Friday I was awarded a BUPA Health Influencer blogging award. The category I won was
- [Front page news. On not being meek and mild.](https://carlyfindlay.com.au/2013/07/11/front-page-news-on-not-being-meek-and-mild/) - It's weird when you're featured on the front page of Australia's national, most read news website two days in a row. Who even decides what's news anyway? (Don't read the comments) (Don't read the comments on this one either) It's strange when you're deemed the top news story, above a national talk show host, Kanye
- [The roundup: Thank you, Uber, MS Australia conference, Voices of 2013, You Am I.](https://carlyfindlay.com.au/2013/07/07/the-roundup-thank-you-uber-ms-australia-conference-voices-of-2013-you-am-i/) - What a busy few days! I'm exhausted! There's been a bit happening, hence the roundup title of this post. Firstly, a big thank you for all the support you gave me following the taxi driver verbal abuse incident. So many friends, strangers and people in the media have shared my story. While I do encounter
- [Discriminatory abuse from a taxi driver. Diversity training is urgently
needed in the taxi industry.](https://carlyfindlay.com.au/2013/07/04/discriminatory-abuse-from-a-taxi-driver-diversity-training-is-urgentlyneeded-in-the-taxi-industry/) - Last night I caught a taxi home. The hotel concierge called it for me, from the Mantra on Russell. I got in the taxi, the driver fiddled with the meter for a minute, and then turned around to ask me where I needed to go. He saw my face, and then asked "what's that smell?"."What
- [We're not here for your entertainment. Why I'm boycotting Embarrassing Bodies.](https://carlyfindlay.com.au/2013/06/30/were-not-here-for-your-entertainment-why-im-boycotting-embarrassing-bodies/) - This is not an embarrassing body. I have an admission to make. I have never watched a full episode of Embarrassing Bodies in my life. I will not be watching it. But I have a strong opinion on the show. I believe that it is voyeuristic and similar to The Biggest Loser, it is
- [Appearance diversity: Jessica Smith's Join the Revolution](https://carlyfindlay.com.au/2013/06/27/appearance-diversity-jessica-smiths-join-the-revolution/) - Jessica Smith, Paralympian, motivational speaker and body image activist, has created a campaign promoting healthy and positive body image. It's called Join the Revolution. I've participated at the end of this post. She received a 2013 Layne Beachley Aim for the Stars grant to further the Join the Revolution campaign. I've asked her to write
- [Social media tips: 10 pointers for live tweeting an event.](https://carlyfindlay.com.au/2013/06/25/social-media-tips-10-pointers-for-live-tweeting-an-event/) - (source) I love live tweeting events. Since May, I live tweeted a disability conference, a blogging class and a few of the Emerging Writers Festival sessions. I think that I got good at live tweeting because of sitting through so many uni lectures and taking pages and pages of notes, and also through six years
- [Shane Warne the Musical. And my baffling crush on Shane Warne the cricketer.](https://carlyfindlay.com.au/2013/06/23/shane-warne-the-musical-and-my-baffling-crush-on-shane-warne-the-cricketer/) - (source) On Thursday night I was treated to a night out at the theatre to see Shane Warne the Musical. I was Tash's guest - she received the tickets from the Arts Centre Melbourne. Eddie Perfect (who is quite perfect) starred as cricketer Shane Warne - and he certainly could pass for Warne's twin. He
- [Crafty little hottie.](https://carlyfindlay.com.au/2013/06/21/crafty-little-hottie/) - I made this for the Hottie Challenge, coordinated by Camille, to raise money for heart and lung transplant research. The bouquet is for Camille's angel donor, and the butterfly is to represent Camille's new life. For once, my craft turned out the same in real life as it looked in my head! I bought a
- [One like = one prayer. How exploitative memes and online slacktivism is
hurting real people.](https://carlyfindlay.com.au/2013/06/19/one-like-one-prayer-how-exploitative-memes-and-online-slacktivism-ishurting-real-people/) - (source) Please don't think that Facebook will donate money or prayers to sick or disabled children. I've seen a number of very distressing photos appear in my feed, with the caption "for every like, Facebook will donate money to save this baby/child". Similarly those photos of sick children with the caption "like if you think s/he
- [Go Red for Women - Whole of body health part two.](https://carlyfindlay.com.au/2013/06/18/go-red-for-women-whole-of-body-health-part-two/) - This post is sponsored by The Heart Foundation.June is the Heart Foundation's Go Red for Women month. Heart disease is No.1 killer of Australian women. The Go Red for Women campaign is designed to raise awareness about women and heart disease, encourage women to understand the risks and make healthier choices to reduce their risk.
- [Preparing children for meeting people with visible differences.](https://carlyfindlay.com.au/2013/06/16/preparing-children-for-meeting-people-with-visible-differences/) - (source) I believe that we should never make a negative comment about other peoples' appearances. But I know children can be curious. They can be cruel too. These last few weeks I've seen a couple of online friends comment on the way other children react to their children who have Ichthyosis. Heartbreaking. Another friend
- [Discriminatory language. Racism, homophobia, ableism, sexism.](https://carlyfindlay.com.au/2013/06/13/discriminatory-language-racism-homophobia-ableism-sexism/) - We must remember that someone's bad day or slip of the tongue is probably multiplying tenfold for those regularly on the receiving end of discriminatory language. I only suffer discriminatory language on a small scale, compared to what many other members of the community endure. Sometimes when I receive a curious question or a nasty
- [My sonic youth](https://carlyfindlay.com.au/2013/06/11/my-sonic-youth/) - If I never heard a new song on commercial radio, I’d be ok. I am only really happy listening to the music that I know. Angus and Julia Stone. Bob Evans. Crowded House. Darren Hayes. Fleetwood Mac. Genevieve Maynard. Kings of Leon. Matchbox Twenty. Motorace. Nirvana. Roxette. Sia. Silverchair. U2 prior to everything they
- [Medical collective nouns - a poem.](https://carlyfindlay.com.au/2013/06/10/medical-collective-nouns-a-poem/) - A scale of dermatologistsA hum of audiologists An odour of podiatristsA slumber of anaesthetists A vial of pathologists A diary of health bloggers A sliver of surgeons A thought of neurologists An injection of immunologists A wind of gastroenterologists A textbook of graduate doctors A scrum of sports doctorsA breath of respiratorists A D-Cup of
- [Stuff I love](https://carlyfindlay.com.au/2013/06/08/stuff-i-love/) - I've been wondering how and where I should file the good awesome things I see on the Internet. I tweet, bookmark and email myself so many links, but they're not all in one spot. Can anyone recommend a clippings service? Meanwhile, I'll just post some of the awesome things I've seen on the Internet (and
- [A friend indeed. Internet friends are the same as real life friends.](https://carlyfindlay.com.au/2013/06/06/a-friend-indeed-internet-friends-are-the-same-as-real-life-friends/) - I had written 1000 words on online friendship, and then I lost it. The app crashed. Which doesn't represent the nature of online friendships in my experience. (Salvaged words are never as good as original words, even when they come with double the thinking. But they'll do.) The friends you meet online are real. The
- [Outrage - is this anger my happiness? [A poem]](https://carlyfindlay.com.au/2013/06/04/outrage-is-this-anger-my-happiness-a-poem/) - When you spend a lot of time on social media like I do, you encounter some strong personalities and see a lot of outrage. They say that you should be scared before publishing your work, and I do feel a little scared. Here's a poem with my observations about outrage and issue turf wars on
- [Social media tips: Hashtags #aquicklesson](https://carlyfindlay.com.au/2013/06/03/social-media-tips-hashtags-aquicklesson/) - Here's a quick lesson on hashtags. Because lots of people ask me 'what's a hashtag?' or aren't sure how to use them. A hashtag looks like this: #word. They're a grouping tool, allowing for people to search social media platforms for specific topics - like #Melbourne #cloud #food #whatiwore (just like metadata on a website).
- [Look up!](https://carlyfindlay.com.au/2013/06/02/look-up/) - I had great plans to use May as a month of writing. I thought by not writing pieces for my blog, I'd write pieces for elsewhere. But May was exhausting (in a good way) - I spent lots of time editing, summarising and promoting posts for Ichthyosis Awareness Month - and so I didn't feel
- [Ichthyosis Awareness Month: My story.](https://carlyfindlay.com.au/2013/05/30/ichthyosis-awareness-month-my-story/) - "Writing about my illness is about getting everything out there so no one else can be uncomfortable about it." ~ Luke Ryan at the Emerging Writers Festival. The most hurtful thing about having Ichthyosis is seeing the way others react to it. If clumsy, horrible words aren't falling out of their mouths, their expressions are
- [Ichthyosis Awareness Month: Larisa's story ~ "People probably think I should be defeated. Maybe because they would be?"](https://carlyfindlay.com.au/2013/05/28/ichthyosis-awareness-month-larisas-story-people-probably-think-i-should-be-defeated-maybe-because-they-would-be/) - Something that has struck me with this Ichthyosis Awareness Month blog project is the 'coming of age' realisations that people have experienced. They may not have always accepted their Ichthyosis and visibly different appearances (and that's ok), but there comes a point where they make a decision of self acceptance. Larisa writes "I finally stopped
- [Ichthyosis Awareness Month: Dianna's story ~"I hope sharing this small amount can help someone else persevere through their personal difficult time."](https://carlyfindlay.com.au/2013/05/28/ichthyosis-awareness-month-diannas-story-i-hope-sharing-this-small-amount-can-help-someone-else-persevere-through-their-personal-difficult-time/) - Dianna was so eager to share her story when she read about Jaime that she wrote to me asking me how she could do so too! She shares a few treatment tips in this post, but as usual, I recommend asking your doctor before you try anything new. Thanks for getting in touch, beautiful Dianna!
- [Ichthyosis Awareness Month: Bailey's story ~  "I prayed for my skin to be healed but every day I woke up still trapped in these scales."](https://carlyfindlay.com.au/2013/05/27/ichthyosis-awareness-month-baileys-story-i-prayed-for-my-skin-to-be-healed-but-every-day-i-woke-up-still-trapped-in-these-scales/) - Bailey's Mum, Tracie, has been following the Ichthyosis Awareness Month blog project. We didn't know eachother until May 2013. I noticed that Bailey was sharing her story about living with Ichthyosis on Facebook, and upon reading it, I asked Tracie if I could share it here. It was too powerful not to share. Bailey has
- [Ichthyosis Awareness Month: first known case of woman with Harlequin Ichthyosis to give birth! Congratulations Stephanie!](https://carlyfindlay.com.au/2013/05/26/ichthyosis-awareness-month-first-known-case-of-woman-with-harlequin-ichthyosis-to-give-birth-congratulations-stephanie/) - Tonight's story is a good news one, and a very fitting event to happen during Ichthyosis Awareness Month. What a milestone in the Ichthyosis community! Her story is too good not to share. Stephanie Turner (from Arkansas, America), who has Harlequin Ichthyosis, gave birth to a baby boy on 25 May 2013. Stephanie, aged
- [Ichthyosis Awareness Month: Kallie's story ~ happy fourth birthday for today!](https://carlyfindlay.com.au/2013/05/25/ichthyosis-awareness-month-kallies-story-happy-fourth-birthday-for-today/) - When I put out some teaser pictures for my Ichthyosis Awareness Month blog project on Instagram, a woman named Kati contacted me asking me if she could borrow the fish picture for her daughter. I wrote back asking her if she wanted to get involved. Kati has a little girl with Ichthyosis - her name
- [Ichthyosis Awareness Month: Angela's story ~ "she's learning to be comfortable in uncomfortable skin."](https://carlyfindlay.com.au/2013/05/25/ichthyosis-awareness-month-angelas-story-shes-learning-to-be-comfortable-in-uncomfortable-skin/) - Angela is a little girl who has both a visible birthmark and Ichthyosis. Her mum, Kimberly, writes of Angela's difficult experiences of being teased, and then the growth in her self care and confidence after receiving counselling and attending a dermatology camp. Kimberly's message is so important - emotional support is crucial to managing Ichthyosis
- [Ichthyosis Awareness Month: Joanna's story ~ a full life lived.](https://carlyfindlay.com.au/2013/05/24/ichthyosis-awareness-month-joannas-story-a-full-life-lived/) - Joanna and I have been friends online for about three years now. Her story shows that having Ichthyosis doesn't stop us from having a full life. Joanna leads such an active life - works full time, goes to pubs, and travels a lot. I'd like to go for a drink with her sometime! "My name
- [Ichthyosis Awareness Month: Jeremy's story ~ "I took some joy in the awkwardness the other person felt for asking me about my skin."](https://carlyfindlay.com.au/2013/05/24/ichthyosis-awareness-month-jeremys-story-i-took-some-joy-in-the-awkwardness-the-other-person-felt-for-asking-me-about-my-skin/) - Jeremy was the first person to see the Ichthyosis Awareness Month blog project and request to be involved! I was so happy when this happened - I love how one person sharing their story encourages others to do so too. He is 34, lives in New Jersey, USA, and has Netherton's Syndrome. "When I was
- [Ichthyosis Awareness Month - Carolyn's story ~ "How I look is how I look and it doesn't need an explanation."."](https://carlyfindlay.com.au/2013/05/23/ichthyosis-awareness-month-carolyns-story-how-i-look-is-how-i-look-and-it-doesnt-need-an-explanation/) - I can't remember how Carolyn and I found each other - I think she wrote to me via email or Twitter after finding my blog. She's in her 50s and lives in America. We have connected on social media and I love that she now doesn't worry about what people think of her skin and
- [Ichthyosis Awareness Month: Nelly's Story ~ the documentary star.](https://carlyfindlay.com.au/2013/05/23/ichthyosis-awareness-month-nellys-story-the-documentary-star/) - Nelly recently took part in a TV documentary that aims to challenge the perceptions of beauty and visible difference. Here she writes about her experiences on the program. "My name is Nusrit but people call me Nelly. I am 29, I live in Coventry in the UK and have Harlequin Ichthyosis. I work as sports
- [Ichthyosis Awareness Month: Jessica's story ~ "My skin condition is "normal" to me and everyone in my life."](https://carlyfindlay.com.au/2013/05/22/ichthyosis-awareness-month-jessicas-story-my-skin-condition-is-normal-to-me-and-everyone-in-my-life/) - Jessica sent me an email in 2011 saying that she found my blog and that I was the first person with Ichthyosis (Netherton's Syndrome) the same age as her. We've stayed in touch and discuss the similarities we face due to our Ichthyosis. She loves horses and lives in Winnipeg, Canada. Here's her story. (Jessica
- [Ichthyosis Awareness Month: DeDe and Evan's story ~ "Evan is my young warrior."](https://carlyfindlay.com.au/2013/05/21/ichthyosis-awareness-month-dede-and-evans-story-evan-is-my-young-warrior/) - I met DeDe (and her cousin Kara) in New York last August, over cocktails and a vat of fondue. DeDe's two year old son Evan has Harlequin Ichthyosis - considered the most severe form. Evan is a little cutie! On that sultry New York night, while we all compared paraffin-soaked notes (not literally - how
- [Ichthyosis Awareness Month: Confetti Skin ~ finding unexpected support from the Reddit forums.](https://carlyfindlay.com.au/2013/05/20/ichthyosis-awareness-month-confetti-skin-finding-unexpected-support-from-the-reddit-forums/) - My friends Jennifer and Rachel See run a blog called Confetti Skin. They're extremely knowledgeable about Ichthyosis, and continually challenge misinformation that's spread about the condition. They recently took to Reddit to engage with the gawkers. The support they gained was incredible - and as we agreed, unexpected. "Hello! We are Jennifer and Rachel See,
- [Ichthyosis Awareness Month: Nick's story ~ "the condition is a blessing in disguise."](https://carlyfindlay.com.au/2013/05/19/ichthyosis-awareness-month-nicks-story-the-condition-is-a-blessing-in-disguise/) - Nick Jones is someone I can't wait to meet. He lives in London. I enjoy his cheekiness on Facebook, and I admire his positivity, perspective and humour about living with Ichthyosis. He is bold and honest - he reminds me of myself with his "this is how it is" attitude. Nick's poetry is extremely moving,
- [Ichthyosis Awareness Month: Joseph's story ~ "Everything is going to be ok."](https://carlyfindlay.com.au/2013/05/18/ichthyosis-awareness-month-josephs-story-everything-is-going-to-be-ok/) - Joseph's story is one of hope. His Mum, Laurie, writes of the uncertainty when Joseph was born, and then how as he grew, life turned out ok - he's conquered the odds. Joseph leads a social and active life. And Laurie has a positive message to pass into new parents of children with Ichthyosis. Thanks
- [Ichthyosis Awareness Month: Shannon and Lauren's story ~ "Our community has no single country, no identified boundaries. Information is shared with a click of the mouse...Hugs have gone virtual." "](https://carlyfindlay.com.au/2013/05/17/ichthyosis-awareness-month-shannon-and-laurens-story-our-community-has-no-single-country-no-identified-boundaries-information-is-shared-with-a-click-of-the-mouse-hugs-have-gone-virtual/) - Shannon and I know each other through DeDe. She has an eight year old daughter called Lauren who has Harlequin Ichthyosis. DeDe's son Evan is pictured with Lauren below. Shannon writes about the gift of community spirit that comes with being affected by Ichthyosis. "Community Definition 1: A unified body of individuals When asked to
- [Ichthyosis Awareness Month: Kitty, Addison and Joella's story ~ "I like to think that people stare because they are struck by such beauty."](https://carlyfindlay.com.au/2013/05/16/ichthyosis-awareness-month-kitty-addison-and-joellas-story-i-like-to-think-that-people-stare-because-they-are-struck-by-such-beauty/) - When Kitty sent me her story for the Ichthyosis Awareness Month blog project, she also sent me 40 pictures of Addison and Joella, her gorgeous granddaughters, because she was unable to choose just a few. And then I had trouble choosing! The happiness Addison and Joella show makes me so happy too. The pride that
- [Ichthyosis Awareness Month: Jaime's story ~ "I want to inspire and encourage others who might have felt embarrassed or ashamed like I did before by embracing their Ichthyosis."](https://carlyfindlay.com.au/2013/05/16/ichthyosis-awareness-month-jaimes-story-i-want-to-inspire-and-encourage-others-who-might-have-felt-embarrassed-or-ashamed-like-i-did-before-by-embracing-their-ichthyosis/) - One of the best things about sharing stories about Ichthyosis is how it inspires others to share their story. It's especially heartwarming when I receive emails from people saying that my blog helped them come to terms with their condition. On Monday I got this email: "I was diagnosed with Ichthyosis Vulgaris about 3 1/2
- [Ichthyosis Awareness Month: Valerie's story ~ " I am thankful that all that pain and suffering has made me the person that I am today."](https://carlyfindlay.com.au/2013/05/15/ichthyosis-awareness-month-valeries-story-i-am-thankful-that-all-that-pain-and-suffering-has-made-me-the-person-that-i-am-today/) - Valerie wrote to me in August last year, thanking me for my blog. She told me about her and her brother who both have Ichthyosis, and she wrote "on days like today when my skin is really flared up and the pain is unbearable, reading about you is a true blessing. Thank you for giving
- [Ichthyosis Awareness Month: Friends forever - Lynsey and Cassie's story](https://carlyfindlay.com.au/2013/05/14/ichthyosis-awareness-month-friends-forever-lynsey-and-cassies-story/) - About 18 months ago I received an email from a young woman in America. Her name was Lynsey and she had found my blog. Her email was titled 'Maybe you can help', and in it she told me about her best friend Cassandra (Cassie) who has Netherton's Syndrome. Cassie has very little to no hair
- [Ichthyosis Awareness Month: Emma Carolyn's story ~ "I wouldn't change having Ichthyosis, because it's who I am and it's made me unique."](https://carlyfindlay.com.au/2013/05/13/ichthyosis-awareness-month-emma-carolyns-story-i-wouldnt-change-having-ichthyosis-because-its-who-i-am-and-its-made-me-unique/) - When I put calls out for contributions to the Ichthyosis Awareness Month blog project, I asked people to tell me about their life as a whole - and I wanted to showcase some of the incredible talents that people have. Today Emma Carolyn shares her story with you, as well as some amazing pieces of
- [Ichthyosis Awareness Month: My Dad's story ~ "It was never easy being the father of a girl with special needs."](https://carlyfindlay.com.au/2013/05/12/ichthyosis-awareness-month-my-dads-story-it-was-never-easy-being-the-father-of-a-girl-with-special-needs/) - I have been moved by every submission for the Ichthyosis Awareness Month project, but my Dad's moved me most - moved me to tears in fact. My Dad has written of the difficulties he had with parenting me. It saddened me to read that I had a hard time affectionately bonding with him. I don't
- [Ichthyosis Awareness Month: Peggy's story about Andrew and Aaron, her adult sons](https://carlyfindlay.com.au/2013/05/12/ichthyosis-awareness-month-peggys-story-about-andrew-and-aaron-her-adult-sons/) - Peggy has two adult sons affected with Ichthyosis. She is a key member of the online Ichthyosis community, always championing against discrimination and ignorance online. She writes about her sons, Andrew and Aaron, here. (Peggy's sons Andrew and Aaron as children) "This is my experience of living with someone affected with Congenital X-Linked Ichthyosis. Prior
- [Ichthyosis Awareness Month: Diana's story ~ "I tell my daughter what being a great friend to someone really means."](https://carlyfindlay.com.au/2013/05/11/ichthyosis-awareness-month-dianas-story-i-tell-my-daughter-what-being-a-great-friend-to-someone-really-means/) - Today Diana Gilbert shares her story for Ichthyosis Awareness Month. Like me, she was initially diagnosed with Ichthyosis form Erythroderma and later diagnosed with Netherton's Syndrome. Diana had a hard time growing up, but now leads a very full life - working at a bank and heavily involved in the church community - and she
- [Ichthyosis Awareness Month: Lucia's story ~ looking at the Wonders of Netherton's Syndrome.](https://carlyfindlay.com.au/2013/05/10/ichthyosis-awareness-month-lucias-story-looking-at-the-wonders-of-nethertons-syndrome/) - My friend Jeff told me about Lucia, a fellow Aussie, when she was a tiny girl. Her Mum, Francesca, and I have connected on Facebook recently. I love Francesca's piece - she has certainly found the positives in Ichthyosis, and that's very uplifting! I too see positives in my condition, and relate to all of
- [Ichthyosis Awareness Month: Nutritional advice from a dietician.](https://carlyfindlay.com.au/2013/05/09/ichthyosis-awareness-month-nutritional-advice-from-a-dietician/) - Today my good friend, blogger and dietician Heidi will be providing some nutritional advice for people with Ichthyosis. I gave Heidi an example of the food I eat on an average day (the food I cook from scratch rather than takeaway or restaurant food), and she offered some suggestions for my diet. Her tips may
- [Ichthyosis Awareness Month: Maria's story ~ "When I’m in the arms of a stranger, dancing...I can forget that I look different and just be me."](https://carlyfindlay.com.au/2013/05/08/ichthyosis-awareness-month-marias-story-when-im-in-the-arms-of-a-stranger-dancing-i-can-forget-that-i-look-different-and-just-be-me/) - Like me, Maria has Netherton's Syndrome. We have been in contact via social media for more than two years, and she approached me to write for the Swedish Ichthyosis Magazine - my article is in the January 2013 issue. When I asked Maria to write a piece for the Ichthyosis Awareness Month, Maria told me
- [Ichthyosis Awareness Month: Gina's story ~ "use the negatives to become stronger every day."](https://carlyfindlay.com.au/2013/05/07/ichthyosis-awareness-month-ginas-story-use-the-negatives-to-become-stronger-every-day/) - Gina Messer is 20 years old from Sacramento, California. I am friends with Gina on Facebook and I always admire how she lives life to the fullest. I have also enjoyed getting into debates about representation of Ichthyosis in the media with her - she has very similar views to me about exploitation and sensationalism.
- [Ichthyosis Awareness Month: Ethan's story ~ "I sometimes forget about my skin being different" ~ wisdom from a seven year old.](https://carlyfindlay.com.au/2013/05/06/ichthyosis-awareness-month-ethans-story-i-sometimes-forget-about-my-skin-being-different-wisdom-from-a-seven-year-old/) - The perspective children have about their situations astounds me. There's a factual explanation, plus a sense of the bigger picture as well as hope for improvement in their lifetime. Today Ethan, aged seven, writes his story. Some of the things Ethan writes about reminds me of how I felt at his age. His Mum, Erin,
- [Ichthyosis Awareness Month: My Mum's story.](https://carlyfindlay.com.au/2013/05/05/ichthyosis-awareness-month-my-mums-story/) - My Mum is the best. She's been my carer, my guide and my best friend. And I am continually thankful to her and Dad for for giving me such a wonderful life and never stopping me from doing anything. I can't imagine what it would have been like for her to have her life changed
- [Ichthyosis Awareness Month: Paula's story ~ "I wish my scaly skin was in the shape of hearts."](https://carlyfindlay.com.au/2013/05/04/ichthyosis-awareness-month-paulas-story-i-wish-my-scaly-skin-was-in-the-shape-of-hearts/) - Paula Ryan has written this incredibly reflective piece for the Ichthyosis Awareness Month project. Paula is 31 and lives in San Diego, California with her husband Mike, dog Holly, and cat Ozzie. She has a master’s degree in Nutritional Sciences and is a Registered Dietitian. She aspires to be the leading expert in nutrition for
- [Ichthyosis Awareness Month: Jack's story ~ a cheeky smile and can-do attitude.](https://carlyfindlay.com.au/2013/05/03/ichthyosis-awareness-month-jacks-story-a-cheeky-smile-and-can-do-attitude/) - I met little Jack Oldacres and his parents in London last year. It was one of my favourites days abroad. You can read about our meeting here. I love seeing photos of his progress on Facebook - he's at nursery school now and plays football on the weekends. Jack's Dad, Danny, wrote this for the
- [Ichthyosis Awareness Month: FIRST ~ the official support foundation.](https://carlyfindlay.com.au/2013/05/02/ichthyosis-awareness-month-first-the-official-support-foundation/) - Moureen Wenik is the program and research director at the Foundation for Ichthyosis and Related Skin Types - also known as FIRST. I asked her to tell me about the Foundation, her role and how it can help patients and families affected by Ichthyosis. FIRST is based in America, but it's resources are available online
- [Ichthyosis Awareness Month: Mui's story ~  "I like that the fact I stand out goes right out the window and the real world comes in."](https://carlyfindlay.com.au/2013/05/01/ichthyosis-awareness-month-muis-story-i-like-that-the-fact-i-stand-out-goes-right-out-the-window-and-the-real-world-comes-in/) - When I first started talking with Mui online, I flicked through her photo albums and was taken aback by how similar we look. (The doctors have told me that the genetic make up of people with Ichthyosis means there's a likelihood of similar face shape and bone structure.) I mentioned our similarities to her in
- [Ichthyosis Awareness Month: Amplifying voices and faces through blogging.](https://carlyfindlay.com.au/2013/04/30/ichthyosis-awareness-month-amplifying-voices-and-faces-through-blogging/) - I am so excited to introduce you to the Ichthyosis Awareness Month blog project! This project will run throughout May. "Ichthyosis is a rare genetic or acquired skin condition affecting an estimated 10-20 individuals per Million. Ichthyosis is characterised by persistently dry, thickened, rough, fish scale skin. There are at least 20 varieties of ichthyosis,
- [The Ichthyosis Awareness Month blog project - launching 1 May 2013](https://carlyfindlay.com.au/2013/04/30/the-ichthyosis-awareness-month-blog-project-launching-1-may-2013/) - I've been working on a very big project that I'm so proud of. All will be revealed here tomorrow and run throughout May.
- [Women are each other's worst critics. But not in Dove adland.](https://carlyfindlay.com.au/2013/04/29/women-are-each-others-worst-critics-but-not-in-dove-adland/) - Recently the Dove Real Beauty sketches ad went viral. It features a forensic artist drawing a number of "real women" without seeing them - he draws by the women's description. The women describe their perceived flaws rather than their best features. "Tell me about your chin?" the artist asks one woman. "It kind of protrudes
- [Tiny Superheroes - Empowering extraordinary kids one cape at a time.](https://carlyfindlay.com.au/2013/04/28/tiny-superheroes-empowering-extraordinary-kids-one-cape-at-a-time/) - It's easy to feel powerless when you have a chronic illness or disability. Much time is spent having medical treatments and appointments, various therapies and trying to overcome society's curiosity and sometimes cruelty. It's easy to forget that every day, you've got strength in your adversity. That you're a superhero. There's a charity in America
- [Staycation.](https://carlyfindlay.com.au/2013/04/26/staycation/) - I've taken a week and a half of leave from my day job. I'm calling it a Staycation. I'm staying at home, writing, reading (I read this amazing piece on outing the appearance shamers called Pictures of people who mock me by Haley Morris-Cafiero, and I want to write something in response to it!), napping,
- [Whole of body health.](https://carlyfindlay.com.au/2013/04/25/whole-of-body-health/) - I have a few confessions to make:I spend so much time focusing on the health of my skin that I don't seem to focus on my whole of body health. I spend a lot of time seeing dermatologists, eye and ear specialists and the infectious disease unit to ensure my skin condition is under control.
- [Dove Real Beauty Sketches Campaign - still highlighting that outer beauty is your most important trait.](https://carlyfindlay.com.au/2013/04/22/dove-real-beauty-sketches-campaign-still-highlighting-that-outer-beauty-is-your-most-important-trait/) - I'm over at Kiki and Tea today discussing the Dove Real Beauty Sketches Campaign. The heart of the message still focuses on outer beauty being integral to happiness and success. "It [beauty] couldn't be more critical to your happiness", participant Florence says. "I should be more grateful of my natural beauty. It impacts the choices
- [You never know who your friends really are until they post a nasty Facebook rant](https://carlyfindlay.com.au/2013/04/21/you-never-know-who-your-friends-really-are-until-they-post-a-nasty-facebook-rant/) - (source) Last week I wrote about using social media for positive change. On the same day, I had to hold back from commenting on a hateful Facebook rant against the New Zealand gay marriage bill. So I unfriended that friend instead. And their religion is supposed to be compassionate. They're a colleague. I am disappointed
- ["Human to human communication creates change": Blogging for social good at the AYAD Human Rights Forum.](https://carlyfindlay.com.au/2013/04/18/human-to-human-communication-creates-change-blogging-for-social-good-at-the-ayad-human-rights-forum/) - On Tuesday 9 April, I was asked to speak at the AYAD human rights forum at Federation Square Melbourne as a part of National Youth Week. An AusAID initiative, AYAD is a program for young people from 18-30 to volunteer in developing countries. The forum was to inspire young people to use ther skills and
- [This skin, it's hungry.](https://carlyfindlay.com.au/2013/04/15/this-skin-its-hungry/) - you cling to me like a koala on my back, warm and close, arms encircling my paper bark trunk.our limbs play, like intertwining branches, tickling infinity, delivering each other stars.we doze, full of eucalyptus love, concave like gum leaves, i will store this memory in deserted knots for the winter.I wrote that poem many years
- [Gotye parody video wins FilmLife festival for organ donation](https://carlyfindlay.com.au/2013/04/13/gotye-parody-video-wins-filmlife-festival-for-organ-donation/) - A parody of Gotye’s 2011 hit Somebody I Used To Know has won the 2013 FilmLife Awards - an annual short film festival that encourages young people to “discover, decide and discuss” organ and tissue donation. The winning film Somebody That I'll Never Know produced by Brooke Huuskes was voted Best Film in a field
- [You. Who are you?](https://carlyfindlay.com.au/2013/04/10/you-who-are-you/) - You are that man on the City Circle tram, my first reader that 'came out' in person, holding my arm so I didn't fall as the tram jerked around the corner, telling me you've been reading since you saw me on Business Chic.You are the stranger on Facebook who told me you relate to my
- [Blogging tips: So you wanna start a blog?!](https://carlyfindlay.com.au/2013/04/08/blogging-tips-so-you-wanna-start-a-blog/) - (source)I'm impressed by a man who is thinking about starting a blog at 2.26 am on a Saturday night, and writes to me asking for tips on how to blog! He's never had a blog before and is keen to get started, having written a number of potential draft posts before sending me that message.
- [Triple J's Hack, my blog in the classroom and Ichthyosis resource page](https://carlyfindlay.com.au/2013/04/04/triple-js-hack-my-blog-in-the-classroom-and-ichthyosis-resource-page/) - It's a bit of a mixed bag today. While its a short working week, I am quite tired. lots on my mind and many things to do. I've been to the Melbourne International Comedy Festival to see Hannah Gadsby and will see a few more shows tonight. I've also been writing a speech for the
- [Blogging tip: Are you driven by statistics or the desire to write?](https://carlyfindlay.com.au/2013/04/02/blogging-tip-are-you-driven-by-statistics-or-the-desire-to-write/) - Blogging can make you feel great. Your writing develops to a point where you beam with pride. Your words on a screen look so shiny! They're quality. You make new friends. Oh my god, so many friends! It’s perfectly acceptable and sociable to spend a Saturday night at home, talking to your friends you made
- [Homegrown - whole foods, Theatre of Ideas at Melbourne Food and Wine Festival and sausage making.](https://carlyfindlay.com.au/2013/04/01/homegrown-whole-foods-theatre-of-ideas-at-melbourne-food-and-wine-festival-and-sausage-making/) - I've become really conscious about what I eat. I haven't become a diet fad bore, cutting out total food groups, but I am keen to cook and eat whole foods where I can. I love the simplicity of fresh produce - it's so tasty and I really do feel better for eating it. I also
- [Something.](https://carlyfindlay.com.au/2013/03/29/something/) - As I crossed the narrow road at a roundabout in Covent Garden I saw a man that looked like him. Maybe a version 20 years older than him - disheveled and street-wise. He'd lived life, maybe not dissimilar to the man I loved. I was on my way to see Matilda on the West End.
- [Glen Hansard and The Frames at Melbourne Recital Centre/ Once on Broadway](https://carlyfindlay.com.au/2013/03/27/glen-hansard-and-the-frames-at-melbourne-recital-centre-once-on-broadway/) - Last year, on my last day in New York, my Mum and I saw a Broadway show. It was Once - the award winning film. And it was one of my favourite things about my trip away. Once, written by Glen Hansard, who also stars in the film with Marketa Irglova (they were in The
- [Blogging tip: Write like someone's watching.](https://carlyfindlay.com.au/2013/03/24/blogging-tip-write-like-someones-watching/) - There's that saying, "Dance like nobody's watching" - where you're encouraged to let yourself go and just have fun, be silly and not be self conscious about what you may like when you're dancing. I'm a big believer in doing the opposite of this when blogging. As in, Write like someone is watching. Actually, write
- [Sunday Snippets](https://carlyfindlay.com.au/2013/03/24/sunday-snippets/) - I've spent the weekend at Camille's house - being her nurse-slave. I've not had to do any nursing or slaving. It's been really lovely hanging out with her, and the best thing is, Camille is doing so well after her transplant.We've been shopping... And eating... And crafting - I made brooches and a hairclip... And
- [Losing some but winning heaps more.](https://carlyfindlay.com.au/2013/03/21/losing-some-but-winning-heaps-more/) - Last night I told someone to fuck off as they were very rude about my appearance. This is how it went:Man at tram stop, staring: "What have you done to your face?"Me: Nothing. I was born like this."Man, shaking his head: "I don't believe it. Where were you born?"Me: "Australia."Man, laughing at me: "I don't
- [Doing what I love. Jumping from the sky.](https://carlyfindlay.com.au/2013/03/19/doing-what-i-love-jumping-from-the-sky/) - The more writing and speaking I do, the more I realise that's what I want to do. I want to make a living as a creative, I want to influence peoples' perceptions about visible difference and appearance and I want to be proud of everything I produce. Yet after being securely employed for now over
- [Mixed business: blogging, Chin Chin, Business Chic, new Bob Evans.](https://carlyfindlay.com.au/2013/03/16/mixed-business-blogging-chin-chin-business-chic-new-bob-evans/) - It's been a big week for me and my blog! Thank you all so much for your support - it really does mean a lot! Thanks for all the lovely comments on my One Million milestone - I remember when my blog clicked over 10,000 hits, and then 100,000. Who would have thought One Million?!
- [One million hits and a blogging tip - Invest in those who invest in you.](https://carlyfindlay.com.au/2013/03/13/one-million-hits-and-a-blogging-tip-invest-in-those-who-invest-in-you/) - My blog has just clicked over past one million hits! Yay!It's been three years and three months since I started Tune into Radio Carly, and this project has been the one I've thrown my everything into. I've learnt you never work as hard as you do for yourself. This hard work has enabled me my
- [Heathivate: The discussion about sex. Awkward.](https://carlyfindlay.com.au/2013/03/12/heathivate-the-discussion-about-sex-awkward/) - I'm not one to talk about sex. I watch scenes on TV and films and I read about it, but it's not something that I comfortable talking about. I had to talk about sex on radio once and I came out of that interview feeling tense and ill-prepared. I don't write about it much, though
- [Tips for having a conversation with a person with a visible difference
or disability.](https://carlyfindlay.com.au/2013/03/11/tips-for-having-a-conversation-with-a-person-with-a-visible-differenceor-disability/) - (This picture was found on one of the Ichthyosis Facebook communities I belong to.) I know I keep banging on about the comments I get about my appearance. The assumptions that I'm sunburnt or burnt. And the way that people just ask me about my appearance before they even say hello. Believe me, I'm not exaggerating,
- [The Footscray Rickshaw Run at the Melbourne Food and Wine Festival.](https://carlyfindlay.com.au/2013/03/10/the-footscray-rickshaw-run-at-the-melbourne-food-and-wine-festival/) - Yesterday evening, thanks to the Melbourne Food and Wine Festival, I got to experience the Rickshaw Run, run (literally - the rickshaws were powered by human runners) by the Footscray Traders Association. I love Vietnamese food, and despite already being on a tour of Footscray last year, I wanted to try a different one, on
- [Circa's One Night on Earth at Melbourne Food and Wine Festival.](https://carlyfindlay.com.au/2013/03/08/circas-one-night-on-earth-at-melbourne-food-and-wine-festival/) - On Thursday night I was a guest at Circa's One Night on Earth - an event in the Melbourne Food and Wine Festival. Circa is at the Prince of Wales in St Kilda - it was a balmy night which made the view of the bay even more beautiful. Three prestigious chefs came together to
- [International Women's Day - the women in my life.](https://carlyfindlay.com.au/2013/03/07/international-womens-day-the-women-in-my-life/) - Today is International Women's Day. It's a day where we celebrate women's achievements and reflect on how far we've come. I got thinking about the women in my life. The woman who has most shaped my life has been my Mum. She's a wonderful, giving and kindhearted woman. She's wise and a great cook. We
- [Healthivate. The most relevant blog conference I've been to.](https://carlyfindlay.com.au/2013/03/06/healthivate-the-most-relevant-blog-conference-ive-been-to/) - Last Saturday I attended Healthivate - an inaugural health blogging and social media conference - in Sydney. I will say from the outset: Healthivate was the most relevant blog conference I have been to. The most relevant for my niche and goals. It was about telling stories rather than selling stories. The stories shared were
- [Wordless Wednesday](https://carlyfindlay.com.au/2013/03/05/wordless-wednesday/) - i have been a bit of a tourist this past week. Surprisingly, I took less photos than usual.
- [Bob Evans at Spotify HQ](https://carlyfindlay.com.au/2013/03/04/bob-evans-at-spotify-hq/) - Sometimes I pinch myself about how lucky I am. I love my life. This weekend just gone, I went to Sydney for Healthivate, the health focused blogging conference (so much inspiration, and I will blog about it all soon). The weekend was packed with exciting stuff, so much so, I need a holiday after my
- [Conversations in a cab](https://carlyfindlay.com.au/2013/03/03/conversations-in-a-cab/) - I've met some pretty interesting people this weekend. Musicians, an ex Navy clearance diver and a work colleague on the plane. Friends, bloggers, speakers and taxi drivers. Often the most interesting stories unfold when people are just doing their job.I love to ask taxi drivers how they are when I get in the cab. Sometimes
- [Lucky.](https://carlyfindlay.com.au/2013/03/01/lucky/) - Yesterday I saw a unicorn chandelier. Today I am speaking at Healthivate. I met some internet friends in real life last night. And I went to an exclusive Bob Evans show. I love life. More to come.
- [The Summer Fire Safety Campaign: My parents' bushfire story.](https://carlyfindlay.com.au/2013/02/27/the-summer-fire-safety-campaign-my-parents-bushfire-story/) - This post is sponsored by the Victorian Government's Department of Justice. It is my parents' 32nd wedding anniversary today, so it's fitting that they've written pieces for this blog post. Happy anniversary Mum and Dad. I was asked by the Victorian Government's Department of Justice to write a blog post on bushfire safety. I am a
- [Wordless Wednesday](https://carlyfindlay.com.au/2013/02/26/wordless-wednesday-2/) - Last night I had dinner with a friend - at Grandparent O'Clock. We went to Wonderbao and Spring Street Grocer. Delicious. Can you believe I had goat's curd icecream?! That street art is by Ghostpatrol. Also, I'm on Kiki and Tea today, sharing my Disaster Chef moments.
- [Dare to dress up on a White Night (thanks to Target).](https://carlyfindlay.com.au/2013/02/25/dare-to-dress-up-on-a-white-night-thanks-to-target/) - This is a sponsored post. Target provided me with vouchers to go shopping and will pay me for this post. Opinions are my own. On Saturday night, I excitedly headed to the city for dinner with Sandra and then on to the White Night Festival. The White Night Festival was an overnight art festival -

## Pages

- [About me](https://carlyfindlay.com.au/about/) - Bio Carly Findlay OAM is an award-winning writer, speaker and appearance activist. She has a Masters of Communication and Bachelor of eCommerce and lives in Melbourne, Australia. Her first book, a memoir called Say Hello, was released in January 2019. Carly edited the anthology Growing Up Disabled in Australia with Black Inc Books. She writes on disability
- [Disclaimer](https://carlyfindlay.com.au/disclaimer/) - There are several ways to contact me - Twitter, Facebook, blog comments and email. I LOVE receiving your emails, messages and comments. I am truly privileged that you feel comfortable enough to share your lives with me - a stranger on the internet. Thank you so much. But please understand that while I endeavour to
- [Say Hello - my book](https://carlyfindlay.com.au/sayhello/) - I have written a book. It’s called Say Hello. HarperCollins is my publisher. The book is a memoir - with anecdotes from my life to date, as well as thoughts and observations on ableism, media representation and beauty privilege. There’s advice to readers with and without ichthyosis, facial difference and disability. It encourages hope and disability
- [Growing Up Disabled in Australia](https://carlyfindlay.com.au/growing-up-disabled-in-australia/) - Growing Up Disabled in Australia is part of the best selling Black Inc series. It’s released February 2021. I am editing the book. We had over 360 submissions and I’ve chosen more than 40 contributors from those. My body and its place in the world seemed quite normal to me. I didn’t grow up disabled,
- [Hire me!](https://carlyfindlay.com.au/hire-me/) - You can hire me to work for you! I have a range of services including writing, speaking and training. Please contact my Speaking Agent, Speaking Out for my rates. Writing Would you like me to write something for you? I can write an article for your news site, copy for your business site or a
- [Contact](https://carlyfindlay.com.au/contact/) - Want to talk about how I can help you? Drop me a line using the form below, or send me an email to carlyfindlay8 (at) gmail (dot) com. If you want to chat, send me a tweet or visit my Facebook page. I'm also on Instagram, probably posting pictures of food or fashion. My speaking agent
- [Support Me](https://carlyfindlay.com.au/support-me/) - I have a favour to ask, please. You know, I've been blogging for quite some time. Almost seven years here! And I am really proud of what I've produced. There are some great resources here for you - scores of posts about Ichthyosis and appearance diversity that are really helpful. I know this because you
- [Shop](https://carlyfindlay.com.au/shop/)
- [Guest post contribution guidelines](https://carlyfindlay.com.au/guest-post-contribution-guidelines/) - I accept guest posts for my blog. The posts are generally about appearance diversity (looking different) and Ichthyosis. I try to run one guest post a month, and have run one each day in May for Ichthyosis Awareness Month. Are you interested in contributing a guest post for my blog? My readership is large and
- [Meeting the Rush cast video](https://carlyfindlay.com.au/meeting-the-rush-cast-video/) - Meeting Callan Mulvey and the Rush cast video Well, I'm holding my breath and posting me on You Tube. Reliving the experience of the Rush season three premiere. Hope you enjoy and have a laugh! (Photo taken by Megan Burke) So my first appearance on YouTube is a little ... ummm.... exuberant. The lovely Hayley
- [Ichthyosis + appearance diversity resources](https://carlyfindlay.com.au/ichthyosis-appearance-diversity-resources/) - Many people ask me for advice on coping with ichthyosis and visible difference. While the experiences I share on my blog may assist you, please keep in mind I am not a medical or psychological professional. Please seek medical advice or counseling before trying any new treatments I've written about. The products I use for
- [What is Ichthyosis?](https://carlyfindlay.com.au/what-is-ichthyosis/) - I have a lifelong skin genetic skin condition called ichthyosis form erythroderma. It means scaly red skin. I was born with it and it will probably never be cured. When I was 10 years old, I was diagnosed with another variation of ichthyosis called Netherton's Syndrome. For me Netherton's Syndrome is not much different to

## Products

- [Writing your blog for the media and beyond ebook](https://carlyfindlay.com.au/product/writing-your-blog-for-the-media-and-beyond/) - I've been blogging for many years now, and I used my blog as an apprenticeship to write for the media. I've developed this ebook for you. You will learn how to get your blog noticed, how to pitch and how to connect with others in the media industry. You can purchase it for $5 AU.
- [Inspiration as objectification of disability - a resource for teachers and parents by Carly Findlay](https://carlyfindlay.com.au/product/inspiration-as-objectification-of-disability-a-resource-for-teachers-and-parents-by-carly-findlay/) - This ebook is a modification of a blog post. It's about Inspiration as objectification of disability - a resource for teachers and parents, written by Carly Findlay.

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