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In this episode Pete and Tristram discuss with Carly what it is like ‘Growing Bold and Looking Different’.

Carly is a blogger, writer, speaker and appearance activist who lives with a skin condition called Ichthyosis. You’ll discover what it’s like growing up looking different to what is considered normal and how Carly overcame people perceptions to receive an Order of Australia, among other accolades.

Podcast Duration: 25 minutes

Podcast Release Date: March 18, 2020

Produced by: Black Me Out Productions

Additional reading

Carly Findlay OAM is an award-winning writer, speaker and appearance activist. Her first book, a memoir called ‘Say Hello’, was released in Australia in January 2019. She is also editing ‘Growing Up Disabled in Australia’ with Black Inc Books, out in June 2020.

Carly works part time as Melbourne Fringe’s Access and Inclusion Coordinator. She writes on disability and appearance diversity issues for news outlets including the ABC, The Age and Sydney Morning Herald, and SBS. She was named as one of Australia’s most influential women in the 2014 Australian Financial Review and Westpac 100 Women of Influence Awards.

She has appeared on ABC TV’s You Can’t Ask That and Cyberhate with Tara Moss, and has been a regular on various ABC radio programs. She has spoken at the Sydney Opera House, Melbourne Writers Festival, the University of Western England and Melbourne University – to name a few.

She organised the history-making Access to Fashion – a Melbourne Fashion Week event featuring disabled models. She has a Masters of Communication and Bachelor of eCommerce. Carly identifies as a proud disabled woman. She lives in Melbourne, Australia.

Find out more about Carly’s book “Say Hello” here

Find out more about “Growing up disabled in Australia” here

Find out more about Carly’s skin condition here

View transcript

Growing Bold and Looking Different

Welcome to the Grow Bold with Disability podcast brought to you by Feros Care. A podcast dedicated to smashing stereotypes and talking about the things people with disability care about most to help us live bolder, healthier, better connected lives. I’m journalist Pete Timbs and I’m Tristram Peters. I work for disability service directory, Clickability, and am a wheelchair user living with spinal muscular atrophy.

Today’s episode of Grow Bold with Disability is Growing Bold and Looking Different. And our guest is blogger, writer, speaker and appearance activist Carly Findlay, who lives with a skin condition known as Ichthyosis. In this episode, we’ll discover what it’s like growing up and looking different to what is considered normal and how Carly overcame people’s perceptions to receive an order of Australia among many other accolades.

Carly, welcome to Grow Bold with Disability. Thank you for having me. Carly, you were born with a condition called Ichthyosis. Can you explain what that is exactly? Yes. It’s a rare, severe skin condition. I have Netherton Syndrome, the type of the Ichthyosis which is on the severe scale of Ichthyosis family. And it’s also a very rare form of Ichthyosis. There’s about 25 types and it varies in severity and also appearance and treatment and my type is on the severe end. For me it means that I have red and scaly and often painful itchy skin. It’s all over my body, but my face is the reddest. I think that’s because it is exposed to the elements more. And it’s not always or nearly ever the sorest, my legs are often the sorest. And I don’t know why, but they get infected more and painful more than my face ever does.

It affects lots of different things. Your skin is the biggest part of your body, the biggest organ of your body. So it affects temperature regulation, metabolism. Although when I reached 30 my metabolism, I found was just like everyone else’s. It also affects, particularly in children, there’s a failure to thrive because we use so many nutrients trying to build our skin. And so for you, a person without Ichthyosis, you would shed 28 days’ worth of skin in 28 days. For me, I would shed 28 days’ worth of skin in one day. We’re constantly losing skin using calories. And it affects lots of other things as well. Like, you know, we are susceptible to allergies. I don’t have many, but I know lots of people that have a lot of food allergies. We also have problems with our eyes and ears. Yeah, lots, lots of different things.

What sort of treatment do you get? I maintain it on a daily basis with liquid paraffin, a soft white paraffin. So that’s the ointment that gets made up by the chemist. I take Panadol if needed. I take antihistamines to stop the itch. If I have an infection or want to prevent an infection, I take antibiotics. And I also have some quite strong painkillers that have only come about in recent years. I have ordered painkillers for a very long time. And I was referred to the pain management clinic quite recently, about four years ago, and it’s really been great because the Panadol just wasn’t doing a lot. I also do baths and showers with stuff that doesn’t have Sodium Lauryl Sulphate in it. I use Moo Goo for my hair and also body. And I have this really great salt wash that helps get rid of the infection’s, or I just use a salt, you know, salt from the supermarket. Yeah.

You mentioned some of the physical aspects of Ichthyosis, but I imagine some of the biggest challenges obviously come down to able-ism and ablest language. Can you tell us a bit about that in some of the challenges that you encounter? Yeah, I would definitely say that the biggest thing, barrier for me, is the able-ism that the society, societal reactions, to Ichthyosis. The inquisitive nature of people can get quite tiring. People’s need to know why I look the way I do, obviously you know have a facial difference. People are very keen on asking me, having to explain things, you know, even not now. But when I had to go to get a new cleaner, I’d have to talk about how they’d be a lot of skin around. Or, you know, I’ve had issues with cleaner not wanting to do it. Or being scared when I’m home. You know, like catching a taxi is always hard because they’re fearful, you know, regularly asking me about my face. You know, I’ve done, I’ve taken a couple of complaints to the Human Rights Commission, I think three in 2013. And, you know, I write about it in the media a lot. That sort of stuff interrupts my day more than, the getting ready, putting cream on my entire body. Like I’m very used to that. It’s the able-ism that interrupts me.

So you mentioned going to the Human Rights Commission. Were all those three incidents that I know, one of them was taxis were all of them taxis? I think the Human Rights Commission complaint culminated after a serious taxi incident. But in that year, I’d had three that I had made a complaint about, including that last one. And it was then that I went to the Human Rights Commission, and as a result, we made a video with the taxi company. I have quite a good relationship with that taxi company now. They sponsored an event I ran a few years ago which was just really great also. Yeah, but, you know, you just can’t guarantee that you’re not gonna get on awful driver. And I don’t think that there’s much dedication given to disability training. And so they get bare minimum. They certainly don’t get a lot of lived experience. Absolutely. The number of times I’ve been denied entry into a cab because of my power chair, and they just don’t want to restrain me in the chair in the car. And it’s just a nightmare. It’s crazy.

So, yeah, I mean, you explore a lot of this in your memoir, which you wrote in 2018 ‘Say Hello’. Is that some of the reasons behind writing this book sort of exploring this and the simple things, the able-ism and so on. I write my book, I guess, as a reference point, you know, for a wider audience but I’d been writing for many years. And a book was the next logical step. I find it useful to say to people who ask me things. Can you give me some advice on language or whatever? I’ve written a book. But yeah, I wrote it because it’s the next step in my career. It’s been useful in, you know, getting me lots of different work in speaking, and training consultancy. And it’s also been really useful in helping parents with their views particularly. I got a couple of messages from parents this week, telling me that I have helped them. So that’s been good.

You chose to write a non-fiction book. You’re a prolific writer. I’ve been reading some of your blogs, there are pages and pages of them. Everyone should check them out. They’re amazing. Was this something that popped into your head to write about or did you have others, did you have any fiction there as well? Well no. I’d been writing the memoir stuff for quite a while for my blog and for the media. I mean, you know, my blog is a memoir that you just keep updating. And also the media. I had said to my agent, I got approached by a few publishers, and then I got an agent who I’d met kind of in person via a Twitter at a conference. And when I had some publishers, I said to the agent do you remember I live tweeted your events can, like, talk about me being in your agency. And so, yes, so then, you know, it was definitely gonna be that, because I don’t really know how to write fiction since I left school, really? But I would like to write fiction one day. So yeah, I mean, I think it’s good to write in the style that you know and become an authority on something, and that, for me, was about, I guess, you know, becoming an authority on myself. But also, on facial difference and appearance diversity issues.

You mentioned that the book is geared towards obviously, a larger audience. What is sort of the one message that you would like to get across. Well I think it’s two different audiences. It’s people with facial differences, disability, skin conditions, etc, to help them feel more confident, less alone. And it’s also to people without and to help them realize that, it isn’t always polite to demand an explanation about why we look the way we do. Or here’s how they can talk to their children about people with facial differences and disability. I think they are the two messages. And also, not to pity us and that our lives are not a tragedy.

You also do a fair bit of public speaking, which is great. At these events is it the same message you’re trying to get across? Depends what the event is, but yeah, definitely. I did a lot last year for my books. I talked about the process of writing and also the messages in the book that sometimes I talk about all the things I talk about employment, and I talk about, access at events. Because I worked for Melbourne Fringe part time as their Access and Inclusion Coordinator. I talk a lot about access for my Fringe job and also for another consultancy work outside. I sometimes talk about media stuff. I just did a thing on the environment and climate change a few months ago. Yeah, lots of different things. But I’d say my specialty would be talking about the book and diversity.

You mentioned in the employment there. How have you found employment? For me, it’s been okay, but I understand and recognized that I am in a privileged position. I’m university educated. I grew up in a middle-class family, might be a working class family that became middle class. But I know that that’s not what it is like for everyone else. A lot of people are segregated in their schooling and their employment. They don’t get the same opportunities. I went to university. It was expected of me. My parents were quite strict when I was a kid. They said that I had to go to university.

I grew up in Albury-Wodonga, which is on the border of NSW and Victoria and in that area, the courses that I did that I wanted to do didn’t exist there and still don’t 20 years on. My parents wouldn’t let me go away for uni. That was good, I guess in hindsight, because it allowed me to live at home and be a bit more financially secure there. I had to do a bachelor of e-commerce, which I hated. It was all economics and accounting. I was not very good at it. I just wanted to do journalism. And then while I was at school, in my last of year school, I got a part time job K-Mart, which was the best thing that I did. It taught me a lot of professionalism, but also, let me make friends that I didn’t have at school and also help me answer questions about my skin and a really polite and assertive way.

I did that, I worked, came out while I was at university for nearly four years. And then at the end of my degree, I applied for a number of graduate programs, and I was successful in two. I took one in Melbourne at the Federal Government. I worked there nearly 15 years. I chose the government because, you know, in my studies I’d learnt that they were a flexible employer, good for affirmative action stuff back then. It was good because, you know, there was enough sick leave in general for me when I needed to go to hospital. And in hindsight, I stayed at very secure job that I did not like. I worked really hard to establish a writing and kind of speaking career on the side. And in 2016 I had to give a speech before Julia Gillard. She was at an event, and I was giving a speech before her and I got back to work. And, um, I was an executive assistant at the time, and I just thought, what am I doing? I have to get out of here. So, you know, I look for lots of jobs, applied for one in a not for profit, and I got it and it was part time. And I was really scared. I thought, what if I can’t make this work? You know. What if I have to ask my parents for money? I made all these lists of things to do to make money. And in that time, you know, I wrote I would write a book on the list. And I also wrote, get a contract with a big organization, a regular contract. And I got those two things within a year.

You know I got a call. My husband said to me, Oh, you should pitch to a big business about doing some contract work and I got next day, literally. The next day, I got this email from someone at a disability organization to say, can you come and deliver us regular training for two years. Okay. So I did that. And then I didn’t love the job at not for profit and I but I had my book deal by then so I could take some time to write, and look for other things. And I got a job at Melbourne Fringe in early 2018. So, with um, with working in the arts and obviously with your employment, I imagine that there’s sometimes this missed balance of being expected to work for free. And that’s a challenging thing, obviously.

How do you take that on? Did you just have a blanket ‘No’? How do you deal with that? I get asked to work for free a lot. It’s happened three times this year. so far. I have a standard email and I talk about how if I say yes to working for free, let’s down the whole disability community because people see disability as very homogeneous. And if I say yes, then they’ll go to the next person and say Carly said yes. We’re going to ask you to say yes. I also talk about the structural inequity of it and how they’re not really contributing to their diversity plan or whatever it is that I’m asked to work for by getting me to work for free.

I wouldn’t say it’s so meant much arts organizations, and I get that in creative industry we’re often asked to work for free. I’m a disabled person in the creative industry so I understand it from both sides, but it is often disability organizations that do it the most. Yeah. Yeah.

Why is that? Yes, they really take advantage. They’ve got very low expectations I believe. It’s a lot of non-disabled people working in these organizations, very low expectations. I know that there’s been, you know, and I know people with intellectual disability sometimes don’t get paid when people who are disabled but don’t have intellectual disability do get paid? There’s that low expectation there, and that shouldn’t happen. I think it’s because of the charity model of disability where disabled people are expected to take charity to take, you know, to get a handout not a hand up. And they rely on something to make their lives better or to cure to hell or whatever. In addition to the medical model, but yeah, I don’t know. I think it’s double when you work in a creative industry. And I had a friend who I asked for a quote and I must bring her after this and say you must charge a bit more for your services you are too low. You are worth more than that.

So, yeah, I’ve got a speaking agent now who deals with that. And a writing agent, obviously, but, I mean, it’s not too bad now, but I will publicize it when I get asked to work for free now. Fair enough I say. Yeah. Now, you received an order of Australia this year. What did you receive that recognition for? Working to the disability community I guess and media. Working the media in disability community. Yeah, it’s quite a bizarre thing, I feel really, strange about it. Not strange like, I just you know, it’s a funny thing. It’s a weird feeling. I don’t know if it’s sunk in yet. I haven’t got my medal, but I keep on getting letters now from people congratulating me and they will be addressed to Carly Findlay OAM.

Are you signing off OAM now in your email? Well, I am when I need to do something official, but I’ve used it in my email address, and I did in the first week ring Peter Dutton’s office to complain about the treatment of refugees and the Corona virus evacuees. I said, Hello. My name’s Carly Findlay OAM. And I’m calling to complain about your inhuman treatment of people on Christmas Island. So, yeah, I have used it. And I had to email our landlord to get something done, and it did get done quite quickly, considering it didn’t get done before I had the OAM. I don’t know whether that’s related, but, yes, I have been using it I needed it. Yeah, I feel it’s a bit weird and I try and separate work like my Fringe work a little bit from my other work, but it’s very hard to, and I think that comes from being at the government where I had to leave those two different lives for such a long time, but yeah, in at work, they said, do you want the website changed? I’m like, no, like, I haven’t got any of that stuff at work or anything. That’s too weird.

I think I really wanted to be visible to other disabled people to see what’s possible and I feel like we have to work harder to prove ourselves than most other people. And maybe this might mean I can I don’t know. You know, I still work hard. Maybe I can just have a rest. Maybe I proved myself a little now, I don’t know. You talk about getting more people recognition and so on so forth.

You’ve actually got an amazing project with an upcoming book titled Growing Up Disabled in Australia. Can you tell us about a bit about that? Yes. Growing up disabled in Australia is part of the black ink growing up series and there’s five books in the series now, this is the fifth book. I got asked to write for Growing Up African in Australia as I have a South African mother. And when I got asked to write for that I wrote, and I don’t actually write a lot about race, but I wrote about race for that book and race and disability. And I asked my agent, I said should we pitch Growing Up Disabled at the same time. And we did. And they said Yes. And, you know, I have the book deal quite quickly. So that meant I had two book deals in a year, which was exciting. And then I had to keep that really secret until December 2018. When we put a call out for submissions and we had in five months or six months, we had 366 submissions.

We chose around 40 and then I commissioned a couple a few others whose voices, you know, we didn’t hear from in the submissions. So you know, the hunger for that writing and reading is really there. Lots and lots of people submitted, and it’s out in June. We’ve got people like Jordan Steele John in the book, he told his story. Isis Holt the Paralympian. We also have Jane Rosengrave who is an aboriginal woman who grew up in institutions and has done some amazing work around the Disability Royal Commission and also the Royal Commission into institutionalized violence in 2016. Elle Gibbs from People with Disability Australia’s in there and I’ve got some people that you might not have known. We’ve got some people who are still growing up and we’ve got people who are elders in the community. Yeah, two of my friends have contributed to it. They’re very, very excited to be part of it. Who are they? Todd and Chantelle. They’re very keen to be published authors. Yeah, it’s a really great opportunity and I know from the other Growing Up books, like Growing Up Asian in Australia was released over 10 years ago, and Ben Law submitted to that. And then he went on to you know, to do an amazing job writing and play writing and TV writing, and then he edited Growing Up Queer in Australia.

When I did growing up when I did the growing up African media, I did a little bit of that last year I didn’t do too much because my book was out at the same time and I wanted other people to have that opportunity. But I did a couple of writers festivals and one of the women on my panel in Byron got a book deal as well through Black Inc. after she submitted to Growing Up African. She was published. So that’s great. Yeah, it’s a really good opportunity for people, and one of the things I’m doing is preparing the contributors for working with the media. I want this to be a positive experience for them. A lot of people have had a bad experience with the media or haven’t had any experience at all because disability is not often covered in a great way by the media. I want to use my media skills to help people and also help the media with this project, and we got some funding to do that. Finally, Carly, as you know, this podcast is called Grow Bold with disability.

Can you tell us what living a bold life is to you? Am I allowed to swear? Go for it. It’s in a good way. Um, I I do a little tweet most days about what I’m wearing, I do it on Instagram and Facebook as well. But on Twitter, we’ve got 280 characters. For the purpose of brevity, I say I’m wearing this today and I’m feeling fucking fabulous. And I do that because I really like clothes. But I also do it to defy those who expect me to not be fabulous with the way I look or not have fun with fashion or not be included in society. So every day and sometimes I might not be feeling fucking fabulous. I might be really sore. I might have had a bad day with discrimination, but I will state that. But I still in myself more confident than society expects me to be. So that’s what Growing or Living Boldly with disability means to me. Perfect. Fantastic. I love that message.

Carly, thank you so much for joining us today on Grow Bold with Disability. Thank you for having me. And our listeners can find out more about Carly, her blog and her book Say Hello and everything else in the links provided in today’s episode show notes. Thanks again for joining us. Thanks so much for having me. It was lovely to chat, thank you for listening.

And if you have enjoyed today’s episode then make sure you subscribe to the podcast Grow Bold with Disability. And if you like what you heard then please take a few moments to pop over iTunes and give our podcast a quick rating so we can continue these conversations and encourage people to Grow Bold. This podcast is brought to you by Feros Care, an NDIS partner delivering local area coordination services in Queensland, South Australia, and The Australia Capital Territory. Feros Care is a people care organization committed to helping people live bolder lives. We call it Growing Bold. And for over 25 years, Feros has been making it real for both older Australians and those living with disability. To find out more head to Feroscare.com.au.

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The content and views discussed in this podcast series are those of the individuals involved. They are not necessarily condoned by, or, are the views of Feros Care or its employees.

Our Guest


Writer, appearance activist, advocate for appearance diversity. Editor of “Growing up disabled in Australia” & author of “Say Hello”. Photo credit: Rick Guidotti

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