Carly Findlay's Blog, page 10

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 as an ovarian mass. 

I am having surgery to both remove the cyst for symptom control, and also to determine what it is – whether it’s malignant or benign. The surgeons will also remove most or all of my reproductive organs – depending on if there is cancer. 

I’m rejoicing that I can say goodbye to my periods though! Just recently I was wishing for my periods to end – knowing I have that power, I am wishing for world peace. 

It has been a shock and a lot of information and options to process, even though I’ve been experiencing symptoms for the last five or six months. Unfortunately many of them are bowel symptoms which I had no idea were linked to ovarian cysts until I went into hospital. I’ve lost weight. I’ve felt full quickly and have lost my appetite – which has been the hardest to manage as a foodie. Before I went to hospital a few weeks ago, I was going to the toilet many times a day, but that’s stopped since one of the medical tests. Currently I have swelling and pain, and I’m quite tired. My skin was very sore for a couple of weeks after hospital, but is feeling much better now.

So this means right now I am working as much as I can, doing medical admin, and I have a long recovery period ahead of me. I ask that all work requests are directed to my agent, Danielle Binks (danielle at jacintadinmase.com.au). When I’m up to doing speaking events, I prefer they are online for the next little while. If you have a question about disability access or representation or my work, check out my books or my blog or scroll back through my socials – or google it. I can’t share your stuff or reply to every message. I ask that you respect these boundaries. 

Please no wellness suggestions – crystals, yoga, herbs, diet etc. I am in great hands with the medical professionals at The Women’s, who are consulting with my dermatology team at the Royal Melbourne; as well as the support from my friends and family. I feel very grateful to be given such good care. Please also no intrusive questions.

I’m just focusing on my health – and that means trying to become good at watching trashy TV, playing with fashion, gentle cooking and doing Lego. You may see me pop up online occasionally, but I expect it will be posts reminiscing about my overseas trip, and also outfit posts. I will try to rest as much possible.

Thanks for your support and love during this difficult time. 

If my work throughout the years has helped you, if you use it in your work, I have a PayPal and a Patreon. Thank you.

Image: Carly, a woman with a red face, short dark curly hair, smiling, standing near a concrete wall. She’s wearing a green jacket over a pink floral dress, and pink boots.

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Face Equality Week 101

It’s Face Equality Week. This year’s theme is My Face is a Masterpiece.

Image: Carly, a woman with red skin, wearing a strappy black dress, red lipstick and glitter at the sides of her eyes. She’s smiling.

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 temporary or episodic.  

What is Face Equality? 

Face Equality is a movement started  by UK charity Changing Faces, led by the late, great James Partridge, aimed at ensuring people with facial differences are treated equally and fairly, free from discrimination, stigma and stereotypes. Face Equality Week is an annual worldwide campaign, led by people with facial differences. This year’s theme for #FaceEqualityWeek shows there is a masterpiece in every face, talents over tropes, skills on screens, amplify artists who don’t fit the mould, and elevate art that depicts visible difference. 

Why do we need Face Equality Week?

Because people with facial differences are still discriminated against – in the workplace, by service providers, in society as a whole.

Because people with facial differences are still omitted and erased – from TV and film, fashion, media and advertising. 

Because people with facial differences are still used as punchlines in jokes

Because people with facial differences are still portrayed as villains, evil, tragic and scary in films and books. 

Because people with facial differences are stared at, othered, mocked, ridiculed, feared and harmed, even when these behaviours are not intentionally carried out  to cause harm. 

Because poking fun at yourself when your face looks a little different from the “norm” is poking fun at people with facial differences.

Because staring, othering, ridicule, erasure and discrimination is exhausting and has a huge impact on our mental health. 

Because we need to celebrate facial differences – triumph over tragedy! It’s important to show our beauty, joy and pride, as well as the difficulties we face.

What can you do to be an ally this Face Equality Week?

Follow, amplify and learn from people with facial differences. I’ve shared a bunch of people in my previous post. Show your kids people with facial differences. 

Make a donation to Face Equality International so they can continue to do great work.

Recognise and unlearn harmful tropes about facial differences and speak nicely about your own appearance. 

More info about Face Equality Week can be found at Face Equality International.

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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, and it helps to dismantle stereotypes and stigma. I love this celebration of facial difference, rather than pitiful depictions and reliving of trauma. 

Too often people with facial differences feel we have to cover up, hide or change our appearance to fit in.

It’s incredibly liberating to defy these low expectations and celebrate our difference and uniqueness. I love that #MyFaceIsAMasterpiece can help our faces stand out even more. An artistic act of defiance.  

For Face Equality Week, I made the best of the way my ointment shines and sticks – bedazzling my face with jewels and glitter. 

I was inspired by Onella (@onella_am) and Paige (@Flawless_Affect), and also the work of Atong Atem. I started small and bedazzled my eye area when I went to see Taylor Swift in February. And then I went all out with the sparkles, with the assistance of Hester. She’s the ultimate makeup artist, photographer and hype girl. I love these photos – they attest to how someone who loves you can capture your beauty when they take your photo. Hester brought out the best in me. 

I’ll be doing a few more posts for Face Equality Week, stay tuned. 

Meanwhile, please follow people with facial differences so you too can dismantle harmful tropes and discrimination towards us: @faceitmama @flawless_affect @courageously.kind @jonolanc @arielhenley @crystaltheactress @phyllidaswift @adam_pearson_tv @athollmills  @nikkililly_ @sorajkasuga @burnedbeauty2018 @realsophisticatedjoy @bethbradfield_ @rasheeradopson @isaodowney @withambernicole @lidya.c.rivera @bellspalsybritt @faceequalityint 

More info on Face Equality Week.

Makeup artistry and photos  by Hester Brown 

Artistic input by Ben Brown and Ruby McKinnon

Face jewels from Lovisa 

Dress is JessaKae

Necklace is Erstwilder x Strawberry Shortcake

Pride got through practicing.  

Images: Carly, a woman with a red face, short dark curly hair, wearing a sequin floofy pink dress and a Strawberry Shortcake necklace. Her face has been bedazzled with silver face jewels around her eyes, forehead and cheeks. She’s near red and green autumn leaves, smiling, looking radiant. 

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I’m off to France to visit the Avène 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 that I can safely use for my skin – and Avene’s range is one of them. Avène Thermal Spring Water is a key ingredient, which makes the products calming and hydrating, and they complement the other ointments and skincare I use very well.

When I was contacted by Avène last year, inviting me on this trip, I was thrilled – because I was already using some of their products, and a visit to the Avène Hydrotherapy Centre would be an incredible experience. Like a spa that’s accessible for me!

I’ve been using the Avene Thermal Spring Water spray for a few years now, after my dermatologist recommended it. It is so soothing and reduces the inflammation. And I’ve since added Avène‘a cleansing oil and a couple of creams to my skincare routine. The Avène Thermal Spring Water spray has been wonderful on the plane and during my stay in South Africa.

My visit to Avène isn’t to cure me. There’s no cure for Ichthyosis – and I don’t want a cure for my appearance, I want a cure for other people’s ableism. It’s to try out the Hydrotherapy Centre to enhance my treatment regime, and help me live my best life with Ichthyosis.

I’ll be sharing lots from my stay there, including how I use the products. I recognise that not everyone can afford a visit to the Hydrotherapy Centre in France, but you can purchase Avène products at a more affordable price – they’re available at Priceline, Chemist Warehouse, and select pharmacies in Australia and worldwide.

I’m looking forward to the treatments, staying in the hotel at the Avène Hydrotherapy Centre, and also the opportunity to rest and write. See you in France! I’ll be posting about it on my socials – Instagram and Facebook.

This is a paid partnership between me and Eau Thermale Avène. Before trying new products, please consult your doctor as I did.

Image: Carly, a woman with a red face and short dark curly hair wearing a black dress with colourful flowers on it. She’s smiling, holding a bottle of Avène thermal spring water spray.

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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 Ichthyosis struggle with all of these things.

Image: Carly, a woman with a red face and short dark curly hair wearing a floofy purple dress, smiling. She’s against a grey background. Black text is next to her, as above.

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Super Fans on SBS Insight

On Tuesday night (2 April) 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.

I am a guest on the show, discussing my super fandom of Savage Garden and Darren Hayes. The other guests were wonderful – bravely telling their stories of super fandom. Many of the stories were relatable across fandoms – football codes, music and TV. And some stories were funny, some shocking (here’s an article about how one of the guest’s marriage broke because of her ex husband’s fandom), and some sad. In many cases, fandom has saved people’s lives, and made us feel a part of a bigger movement. I most loved hearing the guests’ stories of friendships made with other fans, as well as becoming friends with those they’re fans of.

I had such a great time on Insight. Like with The Cook Up, I enjoyed being able to speak to another facet of my life, outside activism. I could talk about fandom all day! The producer I worked with was lovely. And Kumi Taguchi is a brilliant host – her empathetic interview technique brings out the best in people. I love her wardrobe too.

I’ve loved Savage Garden and Darren Hayes for 28 years now – talking fandom on TV waa definitely a highlight for me. And I’m wearing the Sass and Bide jacket that is a replica of the jacket Darren wore at the 2022 Mardi Gras, with the concert tee from last year’s Do You Remember? Tour.

I’ll post the link to SBS On Demand’s Insight episode when it’s online.

Images: 1. Carly, a woman with a red face and short dark curly hair, sitting in a blue TV studio. She is wearing a pink and gold floral jacket with a black and pink Darren Hayes tee underneath. 2. Carly, wearing the same outfit, standing in the studio, a blue and yellow Super Fans sign is on a screen behind her.

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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 colour.”

There was some to that post, though. Those are vintage jackets that I wore to work experience at at my first office job, and I did enjoy wearing them. And I will incorporate them into my existing wardrobe, because they’re in great condition and they still fit!

I love dopamine dressing. I love this bright colours and maximalism makes me feel, and how it’s a conversation starter. I am also used to standing out because of my skin, so I don’t feel awkward pattern clashing when most people are toning it down. I still play dress ups as an adult – in sorting my wardrobe last week. I saw that my competitively loud shirt and blazer looked great together n the hanger, which I hadn’t noticed before. And I am so grateful for the compliments I get in the street and on social media.

Wear what makes you happy – be it bright colours or neutrals; or your own style that make you stand out in the crowd. You do you!

(April Fun Day is April Fool’s Day. But “fool” is an ableist slur, related to intelligence so I’ve re-named the first of April and I hope you’ll consider doing the same.)

Also, let’s throw back to 2021 April Fun Day when I changed the cover of Growing Up Disabled in Australia to cater to non disabled people who couldn’t handle the word Disabled.

Images: Carly, a woman with a red face and short dark curly hair, wearing a very bright, neon green based jacket with lots of colourful flowers on it. Underneath is a neon floral shirt. She’s smiling. On the second photo, there’s text that quotes the April Fun Day para above.

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I’m 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 should only wear greys and browns because I shouldn’t draw attention to my redness with colour. I’m revisiting his wise words. 

This move back to only navy, grey, black, beige and brown feels so right. So me. I can’t wait to get a little daring with taupe, olive and cream! 

I’m introducing this colour palette restructure with two items that I’ve owned for a long time – blazers I’ve had since Year 10 work experience; and from when I started my job in the APS 21 years ago. 

Neutrals really are timeless. 

Thank you for respecting my brave, bold new fashion decision – I understand you’ll be mourning the colour. Scroll down to see how embracing the grey brings out my smile.

I wore neutrals and it felt fucking fabulous.

Images: 1. Carly, a woman with a red face and short dark curly hair, looking serious, wearing a navy blazer over a grey top, looking serious. White text on navy at the top of the photo reads: “I’m in my neutrals era,  and it feels so good.” 2. Carly, wearing a grey pinstripe blazer over a grey top, smiling widely. She’s standing under a tree in both photos. 

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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 an only child. If your parents had more children, would they have had ichthyosis too, and do you think that would have been easier or harder for you?”

“What do you like best about your work?” 

“How would you best like someone  to ask about your skin?”

“If you  don’t mind me asking,  What benefits are there in shedding  skin at the rate you do, if any?” (This came after the one about best ways to ask)

“Is it limiting labelling a child disabled?”

“Do you think  you will ever write again?” (Like I’m past it haha)

“What’s the best interaction you’ve ever had with a stranger?”

“What was the turning point for you accepting yourself and your appearance?”

“Who’s your biggest supporter?”

“What do you like cooking/doing other than writing/listening to?”

“What’s your skincare regime like? Is paraffin all you use?” (They laughed when I said it’s much cheaper and simpler than a Sephora or Mecca haul!)

 “Have you ever met anyone you have really admired in your work?”

“Do you think it would be easier for you if you grew up now, with us?” (I commented that young people these days seem so much more assured and outspoken about their identity and needs, and that they are so kind and friendly – so yes.)

“You get a lot of in person comments and questions, do you  ever get online trolling, and what do you do about it?” (I talked about the Disability Royal Commission –  the purpose and scope, my testimony and the report and recommendations.)

“What’s your fave football team?” (I said things have progressed since I spoke at the school last year and I now have a Melbourne  football club beanie! )

“Is there ever a time when your skin just feels “normal”, like you don’t notice the pain?”

“Do you like Taylor Swift?” 

I also know, this talk had context. I was there to educate, so I knew what I was up for.  But often when I’m out, questions are asked randomly without context, and there shouldn’t be an expectation for me to educate at all times. And that’s ok

I really want to speak at more schools. It’s such a privilege to play a part in education and growth, and it’s such a lovely environment. The kids are alright.

Book me to speak here. 

Image: a selfie of Carly, a woman with a red face and short dark curly hair, wearing a bright pink and colourful floral dress, smiling near a grey wall.

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Count her in (your budget) this International Women’s 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 have the budget for speaking fees or accommodation. Since I last posted about this topic, in February, two other people have asked me to speak for free at their organisations. 

Countless women I know, who work as writers, speakers, advocates and artists, are asked to donate our time; to tell our stories for free; imparting advice based on lived experience and often involving reliving adversity or trauma – all for the benefit of educating and inspiring audiences who are paid or have paid to be there. And the events are organised by people on salaries. 

Often International Women’s Day events are held early in the morning, extending attendees’ working hours. They are almost always organised by women. Women with caring responsibilities have to weigh up the cost of child care or aged care, or ask their partners being able to take time off work to take on caring responsibilities. Disabled women often need extra time and support to get ready for the day. And organisations are expecting us to turn up to speak, all for a cupcake and the opportunity to speak to a privileged audience?!

The theme for this year’s International Women’s Day is Count Her In – Accelerating Gender Equality for Women through Economic Empowerment.

Please count her in your budget when planning your International Women’s Day events. Budget for speakers, as you budget for catering, tech, venue hire and staff. Count her in your budget for the toll of telling her stories, and the time she is away from home. Count her in your budget to ensure you are closing the gender pay gap – for everyone who works for you, not just your employees. Count her in your budget – particularly if she’s from a marginalised background – First Nations, a woman of colour, Disabled, Transgender, a survivor. I am advocating for all women when I ask for payment to speak on days like International Women’s Day.. Count her in your budget. Value women enough to pay us.

Thank you to the orgs who have hired me to work this IWD – and are paying me. It’s much appreciated.

If this post – or my other work – has helped you, you can buy me a drink. Thanks. 

Image: Carly, a woman with a red face and short dark curly hair, wearing a purple, green and white floral dress, smiling, sitting in front of a bookshelf filled with books. Purple text reads “count her in your budget”.

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