Carly Findlay's Blog, page 14

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 been wanting to skate in a costume like this for a while now – ever since I saw the very cool @coco_franklin_ skating in a yellow tartan suit a couple of years ago.

In my recent video I talked about how kids and adults are often and scared of my face because facial difference is perpetuated as villainous. And some of the lyrics to Just a Girl capture my feelings when I endure micro-aggressions.

But here’s a good news story! When I was skating, there was a girl in a beautiful black witchy dress who was whizzing around. We kept smiling at each other as we passed. After about 30 min she said “I really love your costume” and I said “I love yours too”. It made my day. Such a small but lovely moment.

For more resources about supporting people with facial differences and disability at Halloween, check out Face Equality International and Changing Faces . I’ve also written many things here on the blog, and in my book.

Images: Carly, a woman with a red face, dressed as Cher in Clueless – with a yellow and black tartan jacket and skirt over a grey top and black leggings. Her skates and helmet are purple, and her knee and wrist pads are rainbow. A brooch that is a purple cat in a black hat is on one lapel, a black bat upside down is on the other. She’s smiling, wearing sunglasses at the pier.

Video: the video starts with Alicia Silverstone, as Cher in Clueless, walking, and mouthing “ugh, as if!” Then there are stills and video of Carly, a woman with a red face, dressed as Cher in Clueless – with a yellow and black tartan jacket and skirt over a grey top and black leggings. Her skates and helmet are purple, and her knee and wrist pads are rainbow. A brooch that is a purple cat in a black hat is on one lapel, a black bat upside down is on the other. She’s smiling, wearing sunglasses at the pier. She’s skating and standing – there are photos and videos. The final photo is Cher (Alicia Silverstone) in the movie Clueless – in a Yellow and black tartan jacket and skirt, she’s talking on a large mobile phone – it’s 1996. Just a Girl by No Doubt is the music. Lyrics are: “Take this pink ribbon off my eyes
I’m exposed and it’s no big surprise
Don’t you think I know exactly where I stand?
This world is forcing me to hold your hand
‘Cause I’m just a girl, oh, little old me
Well, don’t let me out of your sight
Oh, I’m just a girl, all pretty and petite
So don’t let me have any rights
Oh, I’ve had it up to here…”

The post Ugh! As if! No scary face for Halloween – dressing up as Cher in Clueless first appeared on Carly Findlay.

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 been wanting to skate in a costume like this for a while now – ever since I saw the very cool @coco_franklin_ skating in a yellow tartan suit a couple of years ago.

In my recent video I talked about how kids and adults are often and scared of my face because facial difference is perpetuated as villainous. And some of the lyrics to Just a Girl capture my feelings when I endure micro-aggressions.

But here’s a good news story! When I was skating, there was a girl in a beautiful black witchy dress who was whizzing around. We kept smiling at each other as we passed. After about 30 min she said “I really love your costume” and I said “I love yours too”. It made my day. Such a small but lovely moment.

For more resources about supporting people with facial differences and disability at Halloween, check out Face Equality International and Changing Faces . I’ve also written many things here on the blog, and in my book.

Images: Carly, a woman with a red face, dressed as Cher in Clueless – with a yellow and black tartan jacket and skirt over a grey top and black leggings. Her skates and helmet are purple, and her knee and wrist pads are rainbow. A brooch that is a purple cat in a black hat is on one lapel, a black bat upside down is on the other. She’s smiling, wearing sunglasses at the pier.

Video: the video starts with Alicia Silverstone, as Cher in Clueless, walking, and mouthing “ugh, as if!” Then there are stills and video of Carly, a woman with a red face, dressed as Cher in Clueless – with a yellow and black tartan jacket and skirt over a grey top and black leggings. Her skates and helmet are purple, and her knee and wrist pads are rainbow. A brooch that is a purple cat in a black hat is on one lapel, a black bat upside down is on the other. She’s smiling, wearing sunglasses at the pier. She’s skating and standing – there are photos and videos. The final photo is Cher (Alicia Silverstone) in the movie Clueless – in a Yellow and black tartan jacket and skirt, she’s talking on a large mobile phone – it’s 1996. Just a Girl by No Doubt is the music. Lyrics are: “Take this pink ribbon off my eyes
I’m exposed and it’s no big surprise
Don’t you think I know exactly where I stand?
This world is forcing me to hold your hand
‘Cause I’m just a girl, oh, little old me
Well, don’t let me out of your sight
Oh, I’m just a girl, all pretty and petite
So don’t let me have any rights
Oh, I’ve had it up to here…”

The post Ugh! As if! No scary face for Halloween – dressing up as Cher in Clueless first appeared on Carly Findlay.

You really don’t 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 order at a cafe, you don’t actually need to know.”

And so I told her, she doesn’t need to ask, she doesn’t need to know.

“But my cousin has the exact same thing as you”, she said.

“I’m sure they do, but you don’t need to ask me”.

Because I am not feeling the greatest, I showed frustration at her question. Because she didn’t need to know.

Education from me at all times is not necessary.

The salad was good, though.

(I wrote this in 2016. The quote from Stella Young is in this article.)

The post You really don’t need to know. first appeared on Carly Findlay.

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 difference.

PS: disabilities and mobility aids are not costumes either, and nor is cultural appropriation like black-face and native cultural dress.

Video: Carly, a woman with a red face, wearing a long blonde wig with a badly trimmed fringe, a purple tinsel jacket and purple shimmery necklace. She’s talking to camera, blowing a kiss at the end. Captions are on the video. The image is Carly, looking the same as in the video.

Transcript: 

I’m Carly Findlay. 

Halloween is this week. But faces like mine – depictions of facial differences – are not your Halloween costume.

One of the things that makes me saddest about having ichthyosis is adults and children’s scared reactions to my face. I have experienced people laughing, crying, screaming, shouting and running away from me when they see me, because they’re scared. Many friends with facial differences have said the same. We are seen as evil, villainous, damaged and dangerous. And I don’t want that to be perpetuated through a Halloween costume. 

My face and Halloween have been used in the same sentence many times – by strangers, and even a media broadcaster. Imagine thinking that a person’s facial difference would be useful at Halloween?   Imagine telling them?

Before you dress up as scary face for Halloween have a think about how it affects people like me.

Masks depicting  scales, scars and disfigurement creates stigma and fear. 

Your Halloween costume doesn’t come  with the physical and emotional pain that many of us with facial differences and skin conditions endure.

You can take your costume off at the end of the holiday – I can’t.

You don’t get the ableism and discrimination and fear and ridicule that I do, day in and day out. 

I’m dressed as Taylor Swift in her Midnights Era. Can you tell? After years of wanting to change my appearance, due to the negative stereotypes I’ve mentioned, I’m proud of my facial difference. 

As Taylor sings: 

“Best believe I’m still bejeweled

When I walk in the room

I can still make the whole place shimmer”

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 – clothes strewn over my bed; Nanny and I enjoying styling each other.

I’ve really enjoyed watching Trinny’s videos on social media – her love for colour and layering has been a big influence on my style.

Trinny has just released her book Fearless, and she did a book signing at Readings in Emporium tonight.

The signing queue was a beautiful sight – so many exquisitely dressed people.

While the signing queue was very long – Trinny was having meaningful conversations with everyone who came to meet her. She showed such genuine interest in everyone. And she looked so stunning in a green shimmery jumpsuit and charcoal cape.

Coincidentally, Trinny’s publisher is Harlequin Australia, an imprint of HarperCollins Books Australia – my book’s publisher; and I had worked with one of her publicists on my book tour. When I met Trinny, her publicists introduced me as a Harper author and Trinny asked me about my memoir. We talked about my skin; whether I wear makeup (a little lipstick); Trinny guessed how old I was (she said 32 – almost ten years younger than my actual age!); and complimented me on my outfit. It was lovely!

And then I saw that she shared our photo on her Instagram, with a lovely caption! Wow!

I’m tired and had terrible hayfever yesterday. The book signing was well worth the walk through the plane trees (ah-choo!).

Thanks for making time to chat, Trinny – it was wonderful to to meet you. Looking forward to reading Fearless, and even trying some Trinny London products.

Images: 1. Trinny and Carly near a purple and yellow media wall. They’re standing, smiling. Trinny is wearing a dark shimmery outfit. Carly is wearing a pink jacket with a brooch that is an echidna on a pavlova, blue cake print tee, and neon yellow skirt. 2-3. Carly and Trinny, smiling in conversation. 4. A photo of Carly and Trinny on Trinny’s Instagram stories – caption is “so many beautiful colour combinations”. 5. A book open & signed

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 up that bag, I took Bec another tea towel I had stored away, too beautiful to use. This one was a mushroom friends print by Anna Seed Art.

Bec and I spent a lot of time framing the tea towel to maximise the print, I didn’t want to chop any mushrooms in half, and I love all of the flowers, insects and fruit too.

She lined it with some vintage-esque yellow floral fabric, which is a lovely pairing.

These photos show a brown strap, but I’ve chosen a red strap, as I don’t do brown!

It’s on its way to me in the post – I can’t wait to use it!

When I was young, my parents would hang tea towels on the wall as artworks. I still have one of those today, to reminisce.

Thank you Bec for turning a tea towel into wearable art, and to Anna for designing such a cute tea towel! It’s so beautiful and I am thrilled to have a one of a kind.

Not sponsored or gifted, I bought both the tea towel and bag.

Images: 1.A bag with a wooden handle, it’s got purple fabric featuring a purple care bear and yellow rose on it. 2-5. A fabric bag that is made from fabric that has mushrooms, insects, flowers and fruit on it – the mushrooms are anthropomorphic – with person-like features. It’s lined with yellow floral fabric.

 

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 podcast app, or read the transcript below.

Skin Stories on Apple Podcasts

Skin Stories on Spotify

Image: a selfie of Olivia and Carly, smiling

Skin Stories was made by TBH Skincare.

Image: Olivia and Carly standing outside a cafe, smiling.

Transcript

Olivia: On today’s episode of Skin Stories, we have the incredible Carly Findlay joining us. Carly is an inspiration in the world of beauty, fashion, and inclusivity. As a writer, speaker, and appearance activist, she fearlessly challenges societal norms and empowers individuals with visible differences to embrace their unique beauty. Carly’s story is one of resilience and self-discovery. Living with a rare skin condition called ichthyosis, she has faced numerous physical and emotional challenges throughout her life, yet she has risen above adversity, defying stereotypes, and proving that true beauty lies within each individual. Through her advocacy work, Carly has been a driving force in promoting inclusivity and breaking down barriers for people with visible differences.

She has spoken at international conferences, written extensively on disability and appearance diversity, and continues to be a powerful voice for change. In today’s interview, we have the privilege of delving deeper into Carly’s personal journey. She will share her experiences with living with ichthyosis, discuss the impact it has had on her self-esteem and relationships, and shed light on the importance of creating a more accepting and inclusive society. Carly also offers some incredibly valuable insights and tips on skincare, self-care and cultivating self-confidence, which are relevant for anyone seeking a healthier relationship with their skin.

Olivia: Hey, Carly, what a pleasure it is to have you on Skin Stories with tbh Skincare today. I’m really excited to chat to you. Now I would love to know – who is Carly summed up in three words?

Carly: It’s hard to choose. It is colourful, creative, confident.

Olivia: I love that they all start with a C, and so does Carly. Was that intentional?

Carly: No, totally not prepared.

Olivia: That was so good. I love that. And I definitely agree with those three words. Now tell us a little bit about yourself. What was your childhood like and how was your high school experience, and what did you think that you wanted to be when you grew up?

Carly: I had a mix of good and bad in my childhood. I am an only child, and so I’m very close to my parents, and I had a really nurturing upbringing and was encouraged to read and write, especially, and I really enjoyed making things. But it was also quite difficult because I have a skin condition called ichthyosis, and it meant that both my skin was painful and itchy and difficult a lot of the time, and I was in hospital a lot. But also, the social stuff from children particularly, was really hard, like the exclusion and the bullying and the name calling and questions.

One thing that happened when I was younger was that because I was in hospital so much as an inpatient and an outpatient, I had a lot of time to read and write. I had a lot of time to create, to take my mind off things. Even when I was at home and my mum was bathing me or doing my hair, so combing the scale out of my hair every night, she would work with me to tell stories, to make up stories, and write verbally. So that was kind of my entry into being a writer. And I always wanted to be a writer and now I am.

Olivia: That’s awesome.

Carly: Yeah.

Olivia: I don’t think it’s very common for people to know from such a young age what they want to be and then to actually go and do that.

Carly: Yeah, I actually wanted to be, for a little period of time, I wanted to be a dermatologist. And I thought that it would be great me being a dermatologist, as I had a skin condition and would be able to relate to other people. And back in the ’80s, a man who was a very good dermatologist and a very kind man, but also a privileged white man who didn’t have a skin condition, said to me, “you’ll be mistaken for the patient too often”. And he really put me off. And I guess for me it was when I realised I don’t really like maths and science. That shaped more of my career path. But I think sometimes I would like to do a little bit more in the dermatology field, as in not be a doctor, but maybe like a patient liaison or something like that. And I do actually lecture in genetics now, and I’m not even a doctor, but I lecture at Melbourne Uni sometimes. As a Lecturer talking about genetics and media representation.

Olivia: That’s so cool.

Carly: Yeah, I talk to doctors-to-be at Uni.

Olivia: I feel like I would have had a much more positive experience with the dermatologist growing up, if you had been my dermatologist versus the white men that were my dermatologist.

Carly: It’s funny because I think we’ve talked about this before, but sometimes when you go to a hospital or a clinic or whatever, when you are struggling with sore skin or skin that creates a facial difference, it can be really hard to see someone without a facial difference. And they’re often with such beauty privilege – like, dermatology sort of goes hand in hand with cosmetic dermatology, not just medical dermatology. Often the people that are treating you are very beautiful and I do find that tricky. 

Olivia: It’s funny you say that, though, because I don’t think I’ve ever had a beautiful dermatologist. They were all just like old men.

Carly: Oh really? 

Olivia: Yeah.

Carly: I don’t think I’ve ever seen a dermatologist with a visible skin condition. Not that they need to disclose, but I think that would be a relief to see one and there would be a sense of empathy there. I’ve seen a lot of dermatologists, and to never encounter one with a visible skin condition, it’s quite interesting. But a lot of the time when I do see a dermatologist, especially if they’re one in training, like a junior doctor, I’m the first person like this that they’ve seen. It’s kind of like they’ve hit the jackpot with finding something that they’ve learnt about. I’m treated like a specimen. I went in for my ear cleaning a few months ago and I haven’t had it for a while and it was done very quickly, which is great because often I have to wait for a very long time in the outpatients, I go to public hospitals and there was a senior doctor in there that said, “oh, I know what condition you have” and I don’t know whether he was trying to prove his medical knowledge. But then when I was on the bed and I was having the suction syringe stuck in my ear so I couldn’t go anywhere, I couldn’t really see anything, say or do anything other than wait and speak, the senior doctor said, “oh, I’m going to bring in a student doctor, is that okay?” Generally it’s fine. I don’t mind seeing student doctors. If I’m really unwell and I’m exhausted, I probably would say, no, I’m just here for what I’m here for. The doctor came in and then there was this quiz for him and so the senior doctor was quizzing the junior doctor, “what kind of condition? How does it present?” And I’m like, oh, my God. Like a specimen. Then he didn’t even ask my name or didn’t even say goodbye. And I just thought, you know what, it is important to learn about new conditions and rare conditions, but also it is really important to make the patient feel welcome and human and just basic, bedside manner, as I was on the bed having my ears cleaned out. Yeah, it was really weird.

Olivia: Some people just have no idea, do they? Or don’t seem to care about how you feel about the way that they act.

Carly: Yeah, I’ve been to conferences when I was a kid, mum and I, and my mum and dad and I were often dragged to these medical conferences. They were pitched as, we’ll find a cure one day. There’s no cure for this condition, and I’m okay with that. I’d take a cure for the pain, but not for the appearance. I definitely want a cure for other people’s discrimination. We would go to these conferences at the hospital and it would be all day, and it’s either a medical assessment or an international conference where doctors would see people with rare conditions, and some of the doctors wouldn’t speak. I’d be sitting there in a sheet and one sock, because they’d always have to look at a foot. So I’d have one sock on and one sock off and my underwear. And I was freezing because my body doesn’t regulate its temperature, and it’d just like I was a specimen. When I was a kid, when I was really little, I used to charge the doctors money for a look, which I know is so unethical, but you can get away with it as a kid. 

I said to Mum, I just couldn’t do it, when I entered puberty. I just felt like my body should have been my own then. I didn’t want other people to look at it.

Olivia: Definitely.

Carly: Yeah.

Olivia: I think that leads really well into the next question. So, today we’re here to talk specifically about skin. And we all know that our skin is intrinsically linked to our overall well-being and our feelings of self-worth. I know your skin is a big part of your story, as someone living with ichthyosis. Can you tell us a bit more about this condition and the relationship that you have had with your skin over the years?

Carly: Yeah, so I was born with ichthyosis. The type I was diagnosed with at birth was ichthyosiform erythroderma, which means ‘scaly red skin’ in Latin. And ‘ichthy’ is ‘fish’, and ‘erythro’ is, ‘inflamed red, damaged’ skin. And obviously, 40+ years ago, no one knew about it a lot.

Olivia: Can we just pause there for a second? I think everyone is always blown away when you say how old you are.

Carly: Yes. Genetic skin condition that keeps me looking young. Yeah. I’m 41 and I probably look about 25. It’s great. Just by the by, a few years ago, my Year 12 class at high school had a reunion. I think it was actually a 19-year reunion. Don’t know why. Anyway. And they added me to this group chat and I was teased at school a lot, excluded. And they added me and everyone else to the group chat. And I would say stuff and it was just like being at high school, it was just like being ignored and whatever. And I found a photo of me in Year 11 and I looked exactly the same as I did then, 19 years later. And so, I put it in a pic collage side by side, and I said, oh, I just found this photo of me 19 years ago. I look pretty much the same. Would love to see what you look like. I know that’s quite appearance shaming on my part, but you know what.

Olivia: Fair enough.

Carly: I get the last laugh here when the thing that they tease me about is the thing that keeps me looking really young.

Olivia: Yep, really youthful.

Carly: Yeah, they didn’t know much about ichthyosis at that age, in that time. And I’ve met a lot of people who are older than me who have struggled even more with the not knowing and the way they were treated as a specimen, and all of that. I had some genetic testing when I was 10, and my mum and dad had it as well, to see they carried the recessive gene, the both of them. It’s interesting because my mum and dad, I would think their gene pools are so far apart. My mum is a coloured South African, that’s her term. So she’s a black woman and my dad is a white Englishman. And so, for them to meet and have this recessive gene for this really rare condition. It’s quite astounding. And so we had this genetic test done, and they found out that I had a different type of Ichthyosis called Netherton syndrome. There’s a lot of components of that. So I can’t regulate my body temperature. I don’t have eyebrows or many eyebrows or eyelashes. I’ve got no body hair. This hair on my head is quite a lot for me. The hair is really prone to breaking off. Lots of people with ichthyosis have baldness, either full baldness or patches and stuff, and I definitely do. It also affects my ears in that it gets skin build up. It affects my eyes. I get light sensitivity, and so on overcast days particularly, I can’t keep my eyes open without sunglasses. They get very dry because there’s no lubrication in the lower lids, because the lower lids aren’t elastic enough. I don’t know when it will be – they’ve been talking about this for the last 20 years, that I would have to have an operation one day on my eyes to make the lids more elastic, to hold the tears in. And I went to the eye specialist recently, and they said it’s probably nearing time. So I have to use eye drops and gels and stuff to help get the corneal abrasions under control. I think people think that when you have a skin condition it’s just a small patch of eczema or dermatitis or whatever, but it’s so much more. 

During COVID time – and we are still in COVID time – I acknowledge that I’m susceptible to infections and was more susceptible to COVID than other people. So for me to get my vaccine in the 1B category, which was for people with chronic illnesses, it was so much paperwork to jump through, and my husband could just walk in and say “I’m a carer” and get them. But I had to provide reams of documentation. Even for things like during lockdown for essential services, I would have to provide a lot of documentation. Each time, each lockdown, I’d have to get a new letter to say I needed a cleaner – because that was a medical service, and cleaners were banned for non-medical reasons or non-essential reasons.

There’s a lot of stuff that people don’t realise, and I think that can be really tricky. Like people just assume either I’m sunburnt and it’s not that bad, or it’ll go away, and we know what sunburn leads to, it leads to melanoma. And then there’s that kind of moral panic that people attach with that, like “oh, you’ve been so silly in the sun”. Then when I tell them that I haven’t, they’re like, “oh, what a relief”. Then there is the assumption that either I’m always in pain or not in pain, either. So it’s really tricky. I think I identify as disabled and one of the things I find is when people have a less visible disability, they often feel like they’re not heard and I get that. But also for me, I’ve got no choice but to disclose when I walk in the room or when I’m in the street. And so employers, whoever just judges me and other people can pass.  

Olivia: Yeah.

Hey, guys. Founder Rach here. It’s time for a quick break in this episode because I want to give a shout out to tbh skincare’s incredible mental health partner, ReachOut Australia. ReachOut Australia have amazing online resources. They cover everything from how to deal with acne or confidence problems through to sexuality and other challenges that young Australians face. So, if you’re not sure where to turn to, definitely go and check out  reachoutaustralia.com . They’ve got some really amazing online forums there as well where you can connect with other people who might be going through something similar to you. As part of celebrating the amazing work that Reach Out Australia does, we are going to be donating a dollar from every single order in September on tbhskincare.com to this incredible organisation.

Okay, it’s time to get back to today’s episode.

Carly: So my relationship with my skin when I was younger was that I just wanted to be like everyone else. I didn’t want to have this condition. I just wanted to fit in. When I was really young, when I was probably 9 or 10, I encountered such bullying and exclusion at school. Like, people didn’t want to touch me, didn’t want to sit next to me, calling me names. I was suicidal, and I don’t think any 9 year old should be suicidal. It was pretty bad. I don’t remember much of it. It’s funny you put it out of your mind, but my mum and dad took me to a psychiatrist, and I don’t remember any of that. But then I started to read magazines and stuff and just saw like I just wasn’t represented. It was all how to clear your face of acne, how to get rid of dandruff so that you’ll get a boyfriend. It’s all linked to your body appearance; is all linked to how much attention you received from boys in those magazines – or it was then. 

So I didn’t see anyone like me. The first time I saw anyone with ichthyosis was at one of those conferences. I met this woman who, lovely woman, but she took a lot of different medications to help her be less red. Her skin looked very good, very not-ichthyosis-like, I guess. Not that there’s a measurement of good or bad with this, but it looked better than mine did. She told me and my mom that she was taking all these drugs, but she had so many side effects. The drugs made her liver and heart, and all of that, made those organs damaged. And so the other thing was that she was so in search of a cure, and each to their own. But I remember saying to Mum, “I don’t think she’s a role model for me, because she’s not accepting of her own skin”. I know that’s incredibly judgmental of me to say now, but also I wanted someone who was okay in their own skin and showing that you don’t have to take a heap of drugs and have the opportunity cost of being unwell, just to look less red. 

Olivia: Yeah, isn’t it crazy? I think that that’s such an important point and a metaphor for so many other things that people, and I would say predominantly women, and what we put our bodies through to look a certain way at the risk of being really unhealthy – and probably often very unhappy as well, just so that you look as you think you should.

Carly: Yeah. I think it was when I started working in the end of Year 12, I started working at Kmart, and then I went to Uni the following year and I was meeting other people and making real friends. That was a real turning point for me and learning how to answer people’s questions about if I’ve been sunburned or why do I look like this, in a professional way, that really helped me. I’ve got friends from Kmart, friends from Uni to this day, and it was just such a turning point.

The other thing that happened when I was a kid, though, and it really shaped the way I saw myself, is I grew up in a very small town in the country near Aubrey, and there was a lot of religious people, it was a very religious, very white town. And my mum was probably the only black person in that town until I was about 10. There was a lot of racism, there was a lot of misinformation and moral righteousness placed on an effect. So people would say that my parents had sinned because they’re black and white, and so that is why I ended up with ichthyosis. Like, you can’t get a genetic condition. I know your face. You can’t get a genetic condition like this. It’s genetic, it’s just how it is. And then they’d say “your parents drink alcohol and that’s why”. I remember my mum telling me that they had this almost like an uninvited guest kind of thing. A priest came to their home and said that they’d sinned, and that’s why I’m like this. And Mum certainly told him where to go.

Olivia: But they would say this to you as well?

Carly: Yeah. There were other religious people, would kind of whisper, “your mum’s black and your dad’s white, and that’s why you’re like this”. I know I can see that, but also that kind of judgment, and it was purely based on religion. And so Mum would often send me to Sunday school to make friends, really. And then I remember coming home and saying, “they said if I was born in Jesus’ day, I’d be a leper”. She took me out immediately. I get people now, not so much now, but people praying for me until a few years ago, pretty much until I did Yukana Stat, which I talked a lot about prayers. 

Yeah. It popped up on my Facebook message memories the other day that someone followed me off the tram and tapped me on the shoulder, like, walked – followed me, walked into a shop, tapped me on the shoulder and said, “Jesus loves you”. So, there’s a lot of that. I think things really changed when I became independent and independent in that, when I moved away, but also when I became old enough to manage my bath and shower and hair stuff myself as well, because I could know what I needed and communicate what I needed. I often tell new parents of kids with ichthyosis that when their child can speak, they’ll be able to tell you – it’ll get easier because they can tell you how it feels.

Olivia: Now, you have already touched on this a bit, but could you share some of the challenges that you faced when it came to seeking diagnosis, treatment and understanding your skin condition?

Carly: Yeah, like I said, I was diagnosed straight away, but it is a very rare condition and there’s a lot of types of ichthyosis. There’s like, 25 – and mine’s on the severe end, and so that’s quite rare as well. There are people with ichthyosis that have it really mild and there’s people like me on the really severe end, and so it’s getting the right treatment for the right condition. I have a friend who’s got another type and we did a blog post a few years ago about comparing just how different it is. I will have a shower twice a day and she limits her water use because it hurts her. She has really long hair. I have barely any hair, so there’s that.

But also there’s the constant search for a cure. I feel like my parents and my doctors were doing the best they could, and what they thought it was. But when you’re constantly told that you need to be fixed and in search of a cure, you’re devalued. Mum and dad would take me to places like Chinese herbalists. They have this stuff called Percy’s Powder, which is stuff we bought from this guy on the side of the road. It was like mud, like drinking mud. Mum works in a customer service role in the bank and people would come in and offer her things like pyramid scheme kind of noni juice and mango stain, and all these different things to try. So it was this constant kind of trial and error. It’s funny because I do get a lot of companies say, “hey, do you want to try this product?” And I’ll be like, I’m fine with the paraffin I’ve been using for the last 37 years, or whatever. So I just use liquid paraffin, soft white paraffin mix. And before that, I used sorbolene. I found what works for me. So it is about that. But also, people feel like they’re experts when they see me, and of course I’ve tried something that they’ve suggested. Of course I know my condition so well that I’m trying better than anyone. But also there’s the assumption that I want to be cured. And as I said, I don’t want to be cured for my appearance. I’m happy with this now. I think the turning point was when I realised it takes a lot less energy to love yourself than to hate yourself.

Olivia: I love that. It’s funny, it’s been a consistent message across the different skin conditions that we’ve been talking about, but the same one is that you can’t hate away whatever you’ve got. It’s not going to change by being extra mean to yourself.

Carly: Absolutely. I think my parents have always been real matter of fact, very get on with it, stoic. And this is it. This is how it is. It’s genetic. It’s not related to anything else. I often say to new parents, don’t blame yourself. Nothing could have changed. It just is. I think my parents get on with the attitude. They courted in apartheid time in South Africa, and they had to move to Australia because they couldn’t get married. So they already had that kind of racist background for the reason that they came to Australia in the past, and then they had me, and in the same year they moved countries and just had to get on with it.

Olivia: Your mum’s a very impressive woman.

Carly: She is. She’s very impressive. She’s a very big supporter of my work. My parents are very proud, and also of your work as well. She’s recommended your book a few times.

Olivia: Oh, that’s so nice. She’s loyal.

Carly: Yeah, once she befriends my writer friends she becomes an advocate of their books.

Olivia: Oh that’s so nice. I love that.

Carly: Yeah, she’s really great. And she’s never expected me to educate at all times. I find some parents often think it’s their duty to educate. We don’t owe anyone a medical history. We don’t owe anyone a reason for the way we look the way we do. They’re a stranger. And she’s always told me that I don’t have to tell people and I can tell people to F* off if I wanted to.

Olivia: Yeah, good. I love that.

Now, again, we have touched on this a little bit, but did your skin condition affect your self esteem or body image and how did you cope with negative feelings or societal pressures?

Carly: Yeah, absolutely. When you don’t see yourself in a magazine, when there’s headlines around how disgusting dandruff or oily or dry skin is, then it does. If I see an ad or a TV show that talks about skin conditions being gross, I will probably speak up, be it on social media or write a complaint letter to the company, because that really does impact people.

I’ve never had issues with body image around weight, and I feel like I was so focused on managing medical stuff and the appearance diversity stuff that that didn’t come into play. But definitely I wanted to change the way I looked. I used to play with my mum’s makeup, I guess, to change. But that was more of an experiment. Everyone was doing it. I often think as well, you know I said, I have no body hair, but I try and shave my legs because everyone else is doing it. I’d be thinking, this is weird because I don’t have any body hair, but I just want to do what everyone else is doing. So, yeah, it absolutely did. I think when you turn 30 as well. I think that was a turning point. Just became more confident in what I was wearing. I would wear a lot of browns and greys to not stand out. I’m wearing navy today. Definitely wouldn’t wear navy and black because I’d get skin flakes on my shoulders and people would actively discourage me. You shouldn’t do that because your skin will show on your shoulders. Now I don’t really care about that. It’s not important. So there was that.

Also having a skin condition, particularly one that involves shedding skin, it’s a very public thing. It’s very much like you leave yourself behind. I felt I really struggled in that. There’s a sense of shame. There’s a sense of, you’re dirty or people don’t want to touch you. When I used to work in the government, I’d have people that didn’t want to answer the phone after I’ve had it to my ear. There was one time, and I actually struggle with this because I had such great, supportive managers at the time, but one of them came up to me and said that you have to use a different toilet because people are upset about your skin in the cubicle. So they wanted me to use a separate toilet. I didn’t but it was really hard. It’s hard to call out that microaggression as discrimination for what it is. Obviously she was just passing on a message, but at the time, it was very hard. So there’s that. And when you’re dating, you’re very self-conscious of your body. And so there was that. I don’t want him to see me with an unwashed face. Often I wouldn’t go to sleepovers and stuff – one, because I wasn’t invited, but if I was, I’d always have to get up early to make sure that they didn’t see me before I’d have my face washed or have a shower. And then, to an extent, when I was dating, there was that.

Olivia: I think it is something like you said before, when you hit 30, I definitely felt a shift. It’s like you just stop caring so much about what other people think and start embracing who you are. It’s annoying that it takes that long to get to that point, but when you do, it’s so freeing.

Carly: It is. And also, just having more of a financial freedom to dress how I want and wear the things that really make me happy. Now my work affords me really fun things, like I go to premieres of musicals and I’ve travelled and I speak with amazing people, and that has been amazing. I’ve become really good at speaking out and advocating as well, and having difficult conversations with people and saying, “this isn’t okay”, or, “this is discriminatory”, or, “this is how you can do better”. So having those conversations, I think, is good.

Olivia: Using your voice.

Carly: Yes.

Olivia: I’m excited to hear your answer on this one. What’s the best compliment you’ve ever gotten?

Carly: Lots of people compliment me on my smile and my fashion. Adam says I’ve got really good boobs. That’s really nice.

Olivia: Thanks, Adam.

Carly: It’s really funny, actually. One of the things that happens with ichthyosis is that your skin renews at a very rapid rate. So people without ichthyosis, their skin would probably renew once every 28 days. Mine renews once every day. 

Olivia: Is it every day?

Carly: Every day. Through that, you use a lot of energy. But also I’ll have a shower in the morning and then a shower at night. And if I leave it later than a certain amount of time, I know that my body feels different or sore because the skin has grown over in some parts. And at the end of the day, my boobs are often really perky because the skin has stiffened. And I remember saying to Adam, “my boobs are much more perky than this morning”. He’d be like, “oh, I’ll be the judge of that”. That’s quite funny. They have a bit of a lift at night. I mean, it’s a pity they don’t feel great.

Olivia: They hurt, but they look good.

Carly: Yeah, I feel a bit uncomfortable. 

Olivia: That is so good. Also not what I expected. I didn’t expect you to talk about your boobs, but I love it. I love that for you. Yeah, I can’t say I can relate to that one. 

Carly: But also hearing that I have helped someone become more confident in their own skin. I think that is the best non-appearance-related compliment I can get, that my writing has changed their life in that it is helping tell their new partner that they’ve got a skin condition, or even admitting to themselves that they’ve got this condition and that yes, it’s okay, and that it’s okay to seek assistance. They can go to a dermatologist, or they can get mental health treatment if they need. That’s an incredible compliment. 

Olivia: It’s huge.

Carly: Yeah.

Olivia: And I hope that on the days where you’re getting shitty comments from shitty people online, that you can hold on to that and know that you are making a massive difference. 

Carly: I have a file on my phone called ‘Lovely’, and I just put all the compliments in.

Olivia: That’s so nice.

Carly: You should do that, too.

Olivia: I should. That is such a good idea because there’s so much hate on there that sometimes it’s hard to ignore. That’s a really good idea.

Carly: Yeah, do it.

Olivia: Okay. If you could go back and give your 16 year old self one piece of advice, what would it be?

Carly: Stop using that weird hair stuff that makes your hair yellow. Remember that hair lightening stuff?

Olivia: I did the same. It didn’t go yellow. It went like a weird orangey.

Carly: Yeah. Stop doing that. Also, it will be fine. You’ll be fine. You’ll be great, even. You’ll get a great job and meet great people and have good friends, and you’ll travel and you’ll find a partner. But also you’ll find that you love yourself.

Olivia: Yes, I love that.

Carly: I think that is the most important thing, though. I hear a lot of parents of kids with ichthyosis say, grieve, and I get it. I get the grief. But also, when they’re grieving for their child, they’re grieving for someone like me because their child’s life hasn’t ended. Their child can thrive with this condition. I’ve seen parents say, “My child will never do this”. “They’ll never be able to wear a short sleeve dress at their prom”, or “they’ll never be able to get married”. And I’m like, “you know what? You can wear a long sleeve dress and the world won’t end”. But also, you don’t have to get married. Loving yourself is so much more important. Your worth shouldn’t be based on if you’re going to marry or not.

Olivia: It’s funny what people get upset about or fixate on.

Carly: Yeah.

Olivia: Okay, this is our lucky last question. Say we finish the interview today and you step outside the studio and you come across a lottery ticket that happens to win you $10 million. What would you do?

Carly: Yeah. I’d go on a holiday, buy a house.

Olivia: You could do a few holidays.

Carly: I shop a lot, though, so it might not go very far. I’d absolutely go on holiday, buy a house so that I wasn’t in the rental crisis cycle. And save some money.  

Olivia: Sounds good. Where would you go?

Carly: I don’t know. I really want to go back to Vietnam. The other thing I would do is I would also donate a lot of money to people with ichthyosis who are in developing countries because it’s incredibly hard for them. I am absolutely recognising my privilege here, but when a person is spat upon, is physically harassed because of their ichthyosis, their disability, and the police don’t do anything because they don’t see it as a valid thing. I’ve got friends who are just enduring the most awfulest of discrimination. As I said, babies get killed because they’re seen as a spirit or a curse. So, I would absolutely give the money, and I do anyway. Not that I have $10 million, but I help out people because I feel that their experience of ichthyosis is so much different to mine. It shouldn’t be when we’re in 2023.

Olivia: Definitely. Thank you so much, Carly. It’s been so good to talk to you, as always. I’ve learned so much. And I could talk to you for 10 hours. I think we’ve done a lot. 

Carly: We’ve done a lot. Thank you.

Olivia: But thank you so much. Always a pleasure.

Carly: Thank you.

If this podcast has helped you or made you think differently about facial difference, skin conditions and disability, you can buy me a drink. Thanks!

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 2017, I was delivering regular disability awareness and access training to an organisation in Sydney. One of the parts of my training program detailed the medical model of disability – where disability is seen as a deficit, something to be  eliminated or cured. I had included a news segment and article from ABC News, about the way doctors suggest termination as the only option and apologise to parents when they discover their baby will have or has Down syndrome.  In my training, I  also reinforced how disability is not a tragedy. One family featured in the news story was Kathleen and Andrew, who have a little girl called Elva. Elva has Down syndrome. I had followed Kathleen on social media back then and mentioned I have been using that news story in my training. 

Kathleen and I have become really close on social media – commenting on and sharing each others posts, and chatting regularly. I chat to Andrew too. I’ve admired the way Kathleen encourages anti ableism and disability pride in her posts about Elva – never exploiting or oversharing. She’s also detailed her own disability diagnosis journey on her socials. Her account is well worth a follow.

On Saturday night, I was scheduled to see a Fringe show led by dancers with Down Syndrome. I asked Kathleen if she wanted to come – and she said yes! 

[image error]

We had dinner, then icecream and saw the show. 

The Emotion 21 show was joyous and hopeful and showed such talent and leadership among the dancers. It’s been great to see them thrive this past year.  The show also touched on the low expectations of people with Down syndrome, and proved just what the dancers can do, defying those expectations.

And as I predicted, Kathleen and my friendship is as strong IRL as online. It was a fun night.

Being disabled and belonging to the disability community is so enriching. The people I have met has been one of the best things. To meet Kathleen, and also see the progress of the Emotion 21 dancers, has been wonderful. I’m so lucky to be disabled and do the work I do. 

Image descriptions: 1. Carly and Kathleen, smiling. 2. Carly and Kathleen with icecream. 3. An article about Down syndrome diagnosis, featuring Kathleen, Andrew and Elva. 4. Two dancers from Emotion 21, dancing. The audience is watching on, their faces blurred. 

If you want me to deliver training or book me to speak, get in touch!

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 of prep for our convo!

The chat was pretty serious – we talk about bullying, self acceptance, the harm social media filters do; but we did have a few laughs too. Content warning for bullying, disability hate speech, body dysmorphia, eating disorders and ableism.

You can find the full episode where you get your podcasts from, including on Spotify or Apple Podcasts.

I hope you get a lot out of listening to it.

Thanks for having me, Steph, Claire and Mandy.

Images: 1. A full length photo of Steph, Carly and Laura in a recording studio. 2. A selfie of Steph, Claire and Laura. They’re smiling widely in both. 3. A video of Carly talking to Steph and Laura.

If this podcast has helped you or made you think about facial difference, skin conditions and disability, or you’ll use it in your work , please consider buying me a drink.

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 & artist standing in front of a billboard in the city.

I wrote a piece called A Perfectly Melbourne Day – it’s about how Melbourne is the world’s third most liveable city, but for many disabled people, it’s inaccessible – and I’m calling for individuals and organisations to go above and beyond the bare minimum.

“Disabled people have places to go, friends to see, jobs to do. And it’s about time people and organisations ensure we can get there.

Accessibility looks different for everyone, but in my discussions with my friends, it was unanimous that doing the bare minimum is not enough—that we need individuals and organisations to go above and beyond. Accessibility really is just excellent customer service. And as the Disability Visibility Project declares, ‘access is love’. We want to feel that our city, that we love so much, loves us back.”

Some of my words from the written piece are on a billboard, next to the beautiful depiction of an accessible city being embraced, created by Enoki. A quote by the Disability Visibility Project also features.

I always take the time to admire the art on the Metro Tunnel hoardings – even posing for outfit pics – so it’s incredible that I’m featured now.

People who walk past it can click on the QR codes to read or listen to each writer’s piece. My written and audio piece is on the Wheeler Centre website.

Thank you to the Wheeler Centre for always showing me and my writer friends so much love, and to Metro Tunnel Art for brightening the city with hoardings filled with art.

This feature is in City Square, Melbourne – in Swanston St at the Collins St tram stop until November.

You can listen to or read our pieces on Wheeler Centre’s website.

Photos by Phoebe Powell. The photoshoot was fun!