Carly Findlay's Blog, page 11

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 with rare diseases continue to face loneliness, stigma and feelings of deficit and misunderstanding.

I have a rare disease – Netherton’s Sybdrome, which is a form of Ichthyosis. Netherton’s Syndrome is very rare. According to the National Organization of Rare Disorders, based in the USA, the total worldwide population of people living with Netherton’s Syndrome estimated to be fewer than 5,000.

I did a talk at a school today. One of the teachers asked me what I rate as my biggest achievement. I said, when people with ichthyosis, and their families, (and people with other diagnoses) find me, and they realise they’re not alone, and they are able to find self acceptance, community and pride.

One of the students asked if I ever regret being so open about my life with NS. I said being public has opened me up to trolling and criticism, but it’s also created many opportunities and communities. I don’t regret telling my story and sharing my photos if doing so has helped others with NS, Ichthyosis and other disabilities.

I won’t lie – things get pretty tough living with Netherton’s Syndrome. The pain has been really bad, this week in particular; and the stares and comments never stop, no matter how much awareness raising I do. But nevertheless I persist – living the best life I can.

Adversity and pride can co-exist. You can hate parts of your rare disease and still feel proud.

You’re not alone. There’s a community to support you and your family. Connect with other people with rare diseases – the same diagnosis as you or your child, and different diagnoses too.

Finding community and pride will be life changing. I promise.

There’s hope.
There’s joy.
There’s love – love from others and love for ourselves.
There’s pride.
And there’s no shame.

More info on Rare Disease Day is here.

Image: Carly, a woman with a red face and short dark curly hair, wearing a pink floofy sequin and tulle dress, smiling, twirling. She has gold shoes and white floral socks on. She’s standing near a brick wall. In the bottom right is a Rare Disease Day logo.

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Valentine’s Day dinner at NEL Restaurant in Sydney

image: Nelly Robinson and Carly Findlay in NEL

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 SBS Food, hosted by Adam Liaw.

NEL is a super fancy restaurant, serving a degustation menu. The current menu concept celebrates native ingredients – including a pepperberry jaffle, smoked burra (eel), bush tomato damper, kingfish carpaccio, warrigal and saltbush taco, kangaroo kebab, anise myrtle lamb belly, spanner crab risotto and lemon myrtle twigs.

I ordered the mocktail pairings to go with the food – the green apple and wasabi drink and fingerlime spritz were so yum. The Valentine’s Day menu had a special – a strawberry heart, which was my fave dessert.

It was incredible – such a treat. Every dish told a story, and was presented with such attention to detail.

I loved being able to watch the chefs prepare the food in the kitchen – I gave Nelly a few thumbs up through the meal. The wait staff were so attentive, too. Spectacular, all round.

And it was lovely catching up with Nelly before and after the meal.

Food is love, even when you’re dining alone.

(I paid for my meal.)

Video: a series of photos and videos of dishes and drinks at NEL Restaurant, mentioned above. There are also two photos of Adam, Nelly and Carly from The Cook Up, a photo of Nelly and Carly, and a photo of Carly with a truffle on a log. The video has a voice over by Carly, it’s captioned, and transcribed above.

You can watch my episodes of The Cook Up with Nelly Robinson here: 1, 2, 3, 4.

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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 report acts of discrimination and our experiences are validated and are acted on. It means being protected by the Disability Discrimination Act – or the equivalent act in your country.   It means that we can feel proud of our facial differences, and not conceal how we look or hide away. It means we are visible and present for other people with facial differences, so they feel less alone.

There’s still a long way to go – because I often don’t feel like I am believed when I talk about experiencing discrimination due to my facial difference – and I know many of my friends with facial differences feel the same. But we are stronger together, and us speaking out about our challenges and triumphs means that Face Equality is more recognised and supported.

And thats social justice in action. 

More info on Face Equality International’s work is here. More info on World Social Justice Day is here.

Video: Carly is talking directly to the camera. She has a red face and short, dark curly hair. She is wearing a green and purple patterned top with decorative brooches. Behind her is a bookshelf.

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I’m 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 the tree, she’s wearing an apricot coloured top with coral coloured flowers and green leaves, and a denim skirt; and at the cafe, she’s wearing a pale blue top with colourful flowers and red apples on it. Scenes alternate between tree and table, in following order: 1. Carly’s holding a pile of her own books and books she’s written for – Say Hello, Growing Up Disabled in Australia, Growing Up African in Australia, the Quarterly Essay and Women of a Certain Rage; saying that she’s a disabled writer, of course disabled writers exist. 2. Carly is sitting with headphones on, holding a Say Hello audiobook, talking about how audiobooks are real books. 3. Shes holding the same stack of books as first scene, talking about how disabled writers are expected to write for free. 4. She’s got purple rimmed reading glasses on (gifted by @baileynelson), opening an empty notebook, saying she has many notebooks she hasn’t written in, and laughs. 5. She’s holding Say Hello and Growing Up Disabled in Australia, talking about how she makes all of her book events accessible and wishes non disabled people would do the same. 6. She’s holding children’s books by Anita Cameron and Judy Heumann, talking about how she always champions other disabled writers, encouraging people to buy books by disabled writers. There are captions on the video – white text on pink, above Carly’s head. The cover photo is Carly, smiling, sitting with headphones on, holding Say Hello audiobook.

Filmed and directed by Peta Hooke.

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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 speech we are writing and delivering. It’s the years of experience we’ve had honing our skills. Its the time it takes to write, rewrite and practice. It’s needing to put aside money for tax and superannuation. It’s the time we spend travelling to and from the venue. And it often involves reliving our trauma. We deserve more.

And if you’re asked to work for free, stop saying yes. You’re worth more than exposure.

This video details just one of the times I’m asked to work for free or little fee. I get asked regularly. And I’ve been seen as difficult or ungrateful for wanting to be paid for my work.

You can book me to speak or write here, and if this post has helped you, you can buy me a drink.

Thank you

Video: Carly talking to camera. She’s a woman with a red face and short dark curly hair, wearing an apricot tee with coral coloured flowers and green leaves on it, and a brooch that’s a bunch of coral coloured flowers with green leaves and clear wrapping. There are captions above her – white text on coral background.

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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 – but I do get a reaction on my hands and lips if I touch shellfish (I’m really holding out to let shellfish go!). And most people with Harlequin Ichthyosis and Netherton’s Syndrome experience failure to thrive as babies and children – because our bodies burn so much energy renewing skin. I experienced this – I was always on the smaller side – and had a very fast metabolism until I turned 30. I still eat a lot, but am a bit more mindful as I age.

The digestion issue that I have is irritable bowel syndrome. When I was in my early 20s, I had heaps of tests to see if I had food allergies or intolerance – because my stomach would bloat and I’d need to go to the toilet suddenly after eating processed food like bread, cakes and chips. The tests came back negative – and so I reduced these foods. And then I saw a geneticist who specialised in dermatology and she asked if I get swollen lips when I eat shellfish, and if I get a sore stomach, and I said yea and yes! It was such a relief to know that ichthyosis was the reason for this, and I could reduce my intake of processed food to manage it.

But this fortnight, with moving house and some other stresses, my stomach has not been happy. I have seen the back of the toilet door a lot.

So I practiced some self care. Made some chicken and veg soup with homemade chicken stock; had plenty of cups of mint and ginger tea (mint is in our herb garden), plain oats cooked in water, and a few Imodium tablets. This morning my appetite returned and I made a pumpkin pie smoothie with steamed pumpkin, banana, oats, yoghurt, vanilla, maple syrup, and cardamom, cinnamon, and nutmeg.

And my stomach is finally feeling happier, and so am I, hence the selfie. Such a relief.

Have you had an unexpected symptom of your rare medical condition?

My friend Heidi Apples wrote a post about nutrition tips for ichthyosis for me years ago – she’s a nutritionist.

Images: 1. A selfie of Carly, a woman with a red face and short dark curly hair, wearing an apricot tee with coral coloured flowers and green leaves on it, and a  brooch that’s a bunch of coral coloured flowers with green leaves and clear wrapping. She’s slightly smiling. 2. Looking into a cup of mint and ginger tea. 3. A big pot of chicken and veggie soup on the stove, with a spoon in the pot.4. A glass filled with a pumpkin smoothie, next to a platter that’s got a brown cow and a black Labrador on it, in front of white tiles. 

Has this post helped you? Please consider buying me a drink! Thanks!

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I was targeted by scammers – 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 almost got scammed. (On two separate occasions.)

Here’s one story – the other was quite similar but they didn’t go through my agent. Both times I had alarm bells – I was more prepared for this one.

I was invited on a podcast via my agent, and yesterday I had a briefing.

The podcast recording was scheduled for next week. The podcast was to be paid, $3000 US, which is a lot of money and it is strange to be paid as a podcast guest. I also wondered why I was asked on the pod, as I don’t fit their demographic – the podcast is hosted by a rapper. But there eas a South African connection, so I thought that may be the reason.

I said to my agent that this is a strange request, we both agreed it was, and she asked for payment to be made 24 hours prior to the recording. I’m often asked on podcasts so I didn’t really question things further.

At yesterday’s briefing on Zoom, the “podcast manager”, who didn’t have his camera on, took me through what would happen in the recording – that it would be a casual chat, and that I could talk about my interest in music, as well as being a chef. I said I wasn’t a chef, he quickly corrected it to “your love of cooking”. I said I’m headed to South Africa soon, can I talk about that, he said I can talk about that , and said he’s not in South Africa, he’s in Miami, but the hosts are South African.

He said I’ve been chosen to go on this podcast as I have a large following and am Meta verified. He didn’t seem to know much more about me.

He asked me about payment – if I wanted to be paid by Venmo, PayPal or bank transfer – I said my agent was handling that.

Then he said the podcast would happen through my Facebook page – my public Carly Findlay OAM one. He asked if I could ensure my page is set up for a joint FB live. I have done IG and FB lives in the past where it’s done through Zoom or Streamyard, and I asked why it can’t be done this way, he said because it’s sponsored by Prada.

Then has asked me to share my screen with him, so he could show me where to set this FB live up. I shared for two mins, didn’t type in any passwords and didn’t have any personal details showing. He directed me where to click. It seemed my page couldn’t invite another person to admin. (Phew!) Then I closed the screen share. He said I can’t do the live yet as I’m not set up properly for it, let’s talk again on Sunday. Fortunately there was a glitch with Facebook advertising on my end, which probably protected me!

We ended the zoom.

I felt really uneasy about it, called my agent, and we googled the podcast name plus scam. We found a few articles about this scam where someone poses as a podcast manager to try take control of your FB page.

I felt sick.

I changed my passwords immediately and then called Apple Customer Care to ask them to walk me through my MacBook to see if there’s been any spyware downloaded from his end.

Apple was so great. My MacBook is all clear and safe.

I feel silly, but also, this was so easy to be duped, because I am often asked to be a guest on podcasts. It seemed too good to be true at the time of enquiry, and I wondered what I had in common with a rapper. I was also a little worried given some of the controversies surrounding the podcasts – but the invites really did seem genuine. All the emails – both to me and my agent – were organised and professional, like they were setting up a podcast. Nothing out of the ordinary. I shared a couple of the emails below.

And the thing is, I’m internet savvy. I do podcast interviews all the time. I know how to be (relatively) safe online. I have two factor authentication and fire walls. But these scammers are sneaky – targeting experienced content creators.

With scammers impersonating celebrity management, I’d hope the celebrities do more to warn people about these scams. I saw one of the podcasters being impersonated has warmed their fans, but this article only came up after I knew what to search for. Prior to the zoom call, I hadn’t thought to google “MacG podcast scam”, I only googled the podcast.

All I did yesterday, since this scammy Zoom at 11.00 am is talk to my agent, change my passwords and talk to Apple, and I felt emotionally exhausted.

I have also found a number of other creators who have had the same type of invites to podcasts, and their FB pages were hacked or near hacked – with scammers taking over their pages. Thanks Geek Mamas, Hobby Bobbins, Kitten Lady, Johnny Jet and some others for sharing their stories.

Be safe out there!

Here are some of the emails from the “podcast manager”:

Image 1: text that reads: “

1 am Henry Joseph from MacG Management, the team driving the renowned YouTube channel, Podcast and Chill with MacG. Your outstanding accomplishments and captivating persona have caught our attention, leading us to extend a special invitation for you to join our Prada-sponsored podcast on Facebook.

Our podcast, known for its dynamic conversations, delves into an array of subjects to ensure a rich and diverse dialogue. We explore realms like music, dance, entertainment, public life, nature, life’s challenges, health and beauty, fitness, travel, games, entrepreneurship, and the tales of authors and writers. Also, women-centric matters, sharing empowering narratives, and educating our audience.

Your insights and experiences would be an invaluable addition to any of these podcast segments.

We have flexible time slots available on Tuesday, Thursday, and Saturday in Eastern Standard Time (EST).

Slot 1: 7:00 PM to 8:00 PM EST

1 checked timezones and this converts to 11am-12pm (notes from my agent)

Slot 2: 9:00 PM to 10:00 PM EST

I checked timezones and this converts to 1pm-2pm” (notes from my agent.)

Image 2: green text that reads: “Dear LuCy,

Thank you for your swift response and the collaborative effort in coordinating Carly Findlay’s potential appearance on “Podcast and Chill with MacG.”

February or a later date works well for us. As for the specific date, we remain flexible and open to Carly’s availability within that time

frame.

Regarding the payment process, arranging it seven days before Carly’s commitment sounds reasonable. We appreciate your understanding in providing the necessary invoices once the date is confirmed.

Your proactive approach is greatly appreciated, and we eagerly await the details on the selected date to proceed further.

Looking forward to Carly’s participation and an enlightening episode on our podcast!

Regards,”

I really hope Meta and the podcasters who are being impersonated take this scam seriously and put some warnings and protections in place.

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I’ve 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.

I am still represented by my other wonderful agents. For writing opportunities, contact Jacinta Di Mase Management. For speaking, contact Speaking Out.

Thanks to SilverFox Icon Luisa Dunn –@thesilverlining_1970 – for so generously connecting me.

You can view my Icon profile here.

Here’s a little flashback to me on the facial difference episode of You Can’t Ask That, answering the question “What jobs can’t you do? Flight attendant, newsreader, model, what job can’t you do?” It aired almost seven years ago – I’m laughing at how many times I say “like” in this clip, but I’m also thinking about how many things I have done since then, defying the expectations of what people with facial differences can do. Media interviews and articles, public speaking, many brand campaigns, two books published, organised a fashion parade event at Melbourne Fashion Week, became a Face Equality International ambassador, and now I’ve signed to an agency as a model and content creator! So much of this came about due to being visible on social media. And yes, Adam still takes 37 photos of me for instagram! Thanks to Kirk Docker, one of the YCAT creators, for sending me this clip. You can watch the whole ep on ABC iView. )

The signing came quickly and unexpectedly, and the team have been wonderfully supportive. I’ve already confirmed my first piece of work through SilverFox Management! Here’s their reel with the announcement!

Yay!

Video: a photo of Carly, a woman with a red face and short dark curly hair, cut asymmetrically. She’s wearing a black jacket with colourful flowers on it. Text says “Some news”. Then a short clip from TV show You Can’t Ask That plays – Carly, wears the same clothes, answers questions from cards. There are captions at the top of the clip. Some words from the interview pop up on screen in coloured text. The video ends with a collage of two screenshots from the SilverFox Management website, featuring a photo of Carly wearing a colourful floral jumpsuit, and some text from the website

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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 lot.

I found success in the field of writing, speaking and the arts. I did a side hustle for many years – blogging , which led to publication in news outlets, volunteering on community TV which led to mainstream media work, and speaking gigs. I went from working full time in the government with a side hustle to working part time in the arts, and writing and speaking the rest of the time. It’s been life changing. 

Writing helped me learn about myself and disability more widely, and I’ve met some incredible people whom I’m lucky to call friends, colleagues and mentors. I’ve travelled around Australia and internationally for work. I’ve published two books and my work has appeared in various anthologies. I’ve spoken at writers festivals, and to big and small organisations. I’ve delivered access training to countless organisations and individuals.  I’ve established myself as a leader in access and inclusion in the arts. I’ve given evidence at the Disability Royal Commission.

And I’ve been nominated for and received awards for my work. The biggest achievement for me though is knowing that my work has made a difference to one person – that it has helped them become more confident wfh being disabled and asking for access. If it’s telling someone they work with they have access needs, or just being honest with themselves that it’s ok to identify as disabled; or if it’s  giving an ally the resources to advocate for accessibility or to eliminate ableist language from their vocabulary,  then I’ve done my job.    

What helped me was showing up on social media every day – developing a personal brand, writing skills and building online communities – in disability and chronic illness spaces, writing spaces and the mainstream.  From writing blog posts and  social media posts, to uploading a quick photo or recording a longer video – it all counts. Visibility is possibility, and I want to show disabled people and the rest of the world that we should be seen, that we are proud, and that we deserve to take up space. 

Disabled women and gender diverse disabled people are allowed to have individual success and joy. We are allowed to earn money. We are allowed to charge money for our knowledge, lived experience, skills, time and worth. We are allowed to be happy and have financial security.

Find something you love doing and make it your business.

Read and consume media widely, do courses, and do the thing that you love often to become good at it.

Connect with other disabled people – not even with the same disability – we can all learn from each other.

Show up – big or small – as much as you can.

Commit to being a good ally within the disability community. Make your content, events and work accessible – there are loads of resources to help you do this.

Say no to working for free.

Say yes to things you might not yet have all the experience for.

Be proud of your achievements, and also remember to be intersectional in your advocacy, and make space for others who are less seen and heard.

Don’t be scared about making people uncomfortable with your advocacy. Speaking up is brave, speaking up creates change.

Don’t be jealous of other people’s success – there’s enough room for us all.

Employ self care strategies – you are allowed to switch off and set boundaries. You don’t have to be an advocate all the time.

Singlet kindly gifted to me from Bonds, pic by @pearly.sprinkles.

Image: Carly, a woman with red skin and short dark curly hair, wearing an apricot coloured singlet and hat, smiling near a cream wall.

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It’s 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 statements of achievements.

To everyone struggling right now – I see you. So many people I know are doing it tough, with disabling barriers and bodies and minds, the impacts of Covid, the cost of living crisis, housing and job insecurity, racism, transphobia, abusive behaviour from others, grief and loss (and more); plus the sheer fatigue, worry and uncertainty of living through the last almost four years of a global pandemic. It’s exhausting.

As the violent conflicts in the Middle East and Sudan continue, and the division the conflicts are creating through the world, I wish for peace, for the violence to end and for safety and a chance to rebuild. The loss of lives, homes and history is devastating, and to what end?

I hope you can celebrate the small wins and rest for what’s left of 2023; and I hope your 2024 is brighter,happier, easier and safer. I am hopeful.

Much love.

Image: a small bouquet of colourful flowers in a jar. Black text on purple background reads “It’s ok if all you did this year is survive.” in the top right, and “@CarlyFindlay” in the bottom left.

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