Carly FindlayInterviewMemoirNon-fictionWriter

Carly Findlay

Carly Findlay is an award winning writer, speaker and appearance activist. She is the author of the memoir Say Hello, and has been published in The Guardian, The Age, The Sydney Morning Herald, Daily Life, SBS and Frankie. In 2020 Carly is editing the anthology Growing Up Disabled in Australia.

In 2020 Carly was awarded an Order of Australia (OAM) for services to people with a disability, and in 2014 she was named as one of Australia's most influential women in the Australian Financial Review and Westpac 100 Women of Influence Awards. She has appeared on ABC's You Can't Ask That and Cyber Hate with Tara Moss, and has been a regular on various ABC radio programs. She organised history making Access to Fashion - a Melbourne Fashion Week event featuring disabled models. Carly identifies as a proud disabled woman - she lives with a rare severe skin condition - Ichthyosis.

Growing Up Disabled in Australia is part of a series. You can listen to previous episodes on The Garret about the series, including Ben Law discussing Growing Up Queer in Australia and Maxine Beneba Clarke, Magan Magan and Shantell Wetherall discussing Growing Up African in Australia.

Carly Findlay

TRANSCRIPT

ASTRID: Carly Findlay is a writer, speaker and advocate. She is best known for writing about disability and appearance diversity, including her memoir Say Hello, and also for major Australian news outlets. She is currently editing the forthcoming Growing Up Disabled in Australia, the next generation of the Going Up series from Black Inc. Carly also appears on TV, organises the Access to Fashion event at Melbourne Fashion Week, and was named one of Westpac and Financial Review's 100 Most Influential Women in 2014.

Carly, welcome to The Garret.

CARLY: Thanks Astrid.

ASTRID: Now, I believe congratulations are in order. I saw on your social media this morning that today, actually today as I sit here in front of you, is ten years since you launched your blog.

CARLY: It is! It was a very dull blog post.

ASTRID: Doesn't matter, you still got it out there.

CARLY: It’s like, ‘hello world’. And yeah, I was doing my Masters at RMIT and I thought that I needed to have a portfolio of writing. I've always written, and I've always written online. I've been writing a blog since I was about 19, so since 2001, but back then and before then I was reading blogs. And I was midway through my Masters, I took a very long time for this supposedly two-year course. I did six and a half years. But anyway, I thought, ‘Oh, I need to develop a portfolio of writing’.

So I started this proper blog, and I gradually wrote more and more about myself. And I think at the time when I started my blog my parents were living near Albrey Wodonga. They had bushfires near their house, so I did write a little post about that – it was the first time I really wrote about me very personally that wasn't just about the boy I liked or, you know, something that I'd seen on TV. It was very much a concentrated, dedicated space. A lot of the time it was a diary, you know, I saw a band or I went to breakfast here. But then I got more and more focused on my purpose. And now that I'm a ‘real writer’ in quotes I don’t write so much anymore! I was writing a piece for my blog the other day and I thought, ‘Oh no, I'll just pitch to the news’. And they took it.

ASTRID: Totally! [Laughter] So, I want to go back to what you just said, you thought you should have a portfolio of writing. Now, you did a Master of Communications, is that right?

CARLY:  I did a Masters of Communications.

ASTRID: So, I mean all writers want to write and be seen to write, but that idea that a writer – particularly one as you were back then, emerging, didn't have a public profile – what did that portfolio, that public portfolio of writing, do for you?

CARLY: Well, I think I started the blog in December, and I reckon around April of the next year I saw an article somewhere, I don't know on maybe Facebook, I don’t know, Facebook wasn’t as big back then. It was 2009 and we were using it, but it wasn't like we do now. It wasn't our news source and it wasn't our kind of network. And I saw an ad somewhere that said a government website was looking for writers around disability. And I had only just started writing about disability.

I don't even think I identified as disabled then. I don't think I did, to be honest. I think I identified as chronically ill. And I started writing about my skin on my blog, and then I saw that ad and I sent them that piece that I'd just written. And the piece was called ‘When my face is this sore I don't want to look in the mirror’. And they said, ‘Yeah, we're really interested’. And then I started writing new things for them. Mostly it was around disability, but they also wanted things like music reviews, so I did a few album reviews. I went to see… I think I went to see a movie and I did have a review on that. And it was just, yeah, I mean it paid. It was the first thing that paid me. To be honest, it wasn't a great website because it wasn't disability led. The editor was not disabled, and I know when Stella Young launched Ramp Up that was far higher calibre, and I went on to write for Ramp Up. So yeah, I saw I saw that ad, I applied and then I also though that – the website was called Divine – and I think through Divine I'd seen an ad for Channel 31’s No Limits, which was recorded at RMIT as well. And I did three series of that. I auditioned and did three series that. And then yeah, it just took off.

And I think my step into the mainstream media was when I wrote for Divine, I had to do a piece on body image and disability. And I interviewed, or I went to interview Mia Freedman, who at the time was the Chair of the Body Image Advisory Committee, and she didn't want to be interviewed but she put me in touch with someone from The Butterfly Foundation, who I interviewed. And then after that was published, I sent it back to her I said thank you for your time and connecting me, and her people, her staff said, ‘Can we publish this on MamaMia?’ And I think that was the first real publication. So that was in 2010, so it took nearly a year to get mainstream publications.

ASTRID: So, the blogging landscape has changed in the sense that we have so many different outlets and different technologies – including a podcast, which we're all on – that people can do outside of the traditional media. But blogging is where you got the start of your career. You are now a published author and activist all sorts of other things, Carly. But, you know, writing is something that you've been doing for a long time and you clearly love. After that kind of first break and the contact you know with Mia Freedman and getting into MamaMia, how did you start to learn to pitch your writing?

CARLY: Oh yeah. So I felt like at RMIT the course was amazing and I did very well in it, much better than my undergrad of business degree – which I did not know anything about, economics or accounting, I just scraped by – but they actually did not teach us how to pitch. So, they taught us the craft of writing and I did really great subjects with Matthew Ricketson and some other journalists, but they didn't teach me how to pitch. But when went blogging was at its peak, around 2011, 2012 to maybe 2014, there was this competition run by the Australian Writers Centre, then the Sydney Writers Centre. Valerie Khoo runs that organisation, and my blog was a finalist in there three times. And so, the prize was a course at the writers centre.

And I think the first time that I was a finalist I didn't have time to do the course, so I put it off – because I was doing my Masters – and I put it off and then I did it as I'd finished my Masters in 2012. And that really taught me how to pitch. It taught me how to read the magazines or newspapers that I wanted to go for, and the first assignment that I did for that course, or maybe the last assignment rather, was my first big pitch which was to Frankie Magazine. And then I got published in Frankie, and then I started writing for Daily Life. And yeah, it just it just took off from there.

ASTRID: It did. I want to ask you about rejection. So, every single writer in this country gets rejected. For beginning writers, emerging writers, it can be pretty harsh.

CARLY: It can be.

ASTRID: How do you deal?

CARLY:  So, I found that I wasn't so much getting rejected in the writing. So, my pitches that I was sending into the editors at Daily Life, SBS, it was mostly Daily Life, they weren't getting rejected. I had really good relationships with the editors. It was in blogging, I think the measure of success was seen to be advertising. And so, I was not getting advertising. And in hindsight I took a few things… like I remember writing a blog post. I sold my blog for a bar of chocolate. And I don't really eat chocolate. I like good chocolate, but I wouldn't eat any of that kind of chocolate you can buy a supermarket. And I remember this brand, a big brand, gave me $100 to write about chocolate. And you know, I really regret that, because I was like, ‘Yes, I'm finally getting advertising’. And all these bloggers were getting advertising in beauty and fashion in supermarkets, and nobody wanted a chronic illness blogger that looked different. And I really struggled with that, because I'd go to the blogging conferences and it would all be, you know, you can make money from your blog. And I was getting the same hits as these people, you know, I was getting the same number of views, I was writing consistently, I had a bit of a profile, yet no brand wanted me. And it was really hard. And then in the last maybe three years I've had lots of work with brands, which has been great. Not so much for my blog but Instagram.

ASTRID: You’ve got a public brand, Carly.

CARLY: Yeah. And I joked last year that I was so busy that I did not want to take any more work unless somebody sent me pyjamas, bedding or a bed, because I was so tired. And I got my husband to take a photo of me in bed and I put this post up. And a brand sent me some pyjamas, and then earlier this year I got asked to work with T2, which is like a dream because you know I drink a lot of tea and while I write and read. And I've done some other stuff, and I've got a connection now, I'm about to do something with a supermarket, And it's just really funny how that's turned out. But that rejection hurt me more than the other, the writing, because, you know, I wasn't often getting rejected for articles.

ASTRID: So the years of blogging is what led you into Say Hello, which is your memoir.

Now it hasn't quite been out for a year, but it's been out for you know it has been existing in the world for quite a while.

CARLY: Eleven months.

ASTRID: A memoir is a very different form and a way to give your story, share your story with an audience. Different than blogging. How have the last eleven months been for you and perhaps more importantly what have you learnt about sharing your own story?

CARLY: Well, it's been really busy. But one thing that I have found is there are things that I saved for the memoir, not much, but there were few things that I saved in my memoir that I knew I could not write online, because there wasn't not enough space between me and the reader. So, if I endure ableism, discrimination to disabled people, normally when I write online about this – say if a taxi driver has discriminated against me because he doesn't want to take me – I will get people play the devil's advocate. They will say, ‘Oh, of course this happened’ or ‘they don't know you’ and ‘of course he was scared of your face, so of course you had to explain’. And so, I got really tired of doing that, and I felt like this book is just a series of angry rants about these things that happen. But I do not get the same response now that I've got the book out to this ableism as I do when I write online. So that's put some space between made the reader.

ASTRID: That's quite fascinating because I wouldn't have thought that. Do you know why?

CARLY: Well I don't get, you know, I don't get any e-mails to tell me how silly I am, or how inaccurate I am, or that I'm just asking for this ableism or pretending it happens. After someone's read a book, it's been very different. I think it's just because of the instant reaction. When someone sees you writing online they can easily respond. When you've got a book you have to buy the book, you have to read all the three hundred and thirty six pages or whatever there is, and you know, and then you have to find the person and email them. So yeah, it's been different. But I think the blog really helped me, you know, I was very prepared in sharing my story. It's very good in developing writing the blog and very good in developing an audience.

And that's what publishing wants to see. I keep meeting people that say, ‘Hey, I want to write a book but I don’t like writing’. And they're never written before, they don't like reading and they don't really like developing an audience online. And they are the things that you need to write a book.

ASTRID: They're quite fundamental.

CARLY: Yes. So that's really how… This year it's been very busy, very busy, more busy than I thought I'd ever be. And I feel like the promotion is as long as writing the book. And also, it's been great, like I mean, as you probably know, a book does not earn much money. But the flow on effects have been very good. I get a lot of work out of my book because people have seen it and they say they want me to speak. I went to this event recently and all the place cards had a photo of my book on it, and that is the best advertising. So, it's been it's been very good. I mean, I try not to read the Goodreads reviews, and the ones that are negative – which aren't very many, to be honest –often just don't get the ableism. I had one say, ‘Carly's a thoroughly unpleasant person’.

ASTRID: Wow… which has nothing to do with your story or your writing.

CARLY: Because I'm so angry, I think. So yeah, it's been okay. I think it's been pretty good. It's been a weird thing as well. Lots of people come up and say, ‘I've read your book’ or ‘I've listened to your book’. I was with a friend the other day who said she doesn't read books and she'd love to download my audio book which is narrated by me and I showed her how to do that. And that was pretty exciting, you know, that people are wanting to pay for it.

ASTRID: Oh completely. Now, I did want to talk to you about how you… You have a great public brand, you know, and that does obviously come with opportunities in terms of work but also you know recognition on the street or in public. In terms of having a public profile and a memoir, and of course Growing Up Disabled which will come out in about six or seven months, there is marketing involved in the book. As you just said, it's almost as much work as writing the thing in the first place. Talk me through how you even approached marketing a book.

CARLY: Well, I feel grateful to in my e-commerce degree that I did many years ago. I feel grateful to have studied that marketing and, you know, learned that. As I said to you before, I spent a lot of time listening to podcasts around book writing, book publishing, book marketing. The best one for me had been The Creative Penn by Joanna Penn, which is a self-publishing podcast, but it was so helpful in terms of marketing. And also your podcast.

ASTRID: Thanks Carly.

CARLY: And The First Time. I listened to a heap of writers talking about how they marketed their book. And I feel like I've written this thing, I want people to read it, I want people to buy. You know, I want my agent to get their money's worth out of you. My agents are amazing! And you just want to make sure people read it. You haven't written it for people not to read it.

It has been… it's been hard, because I felt very much a part of the disability community before I got my book deal. And after I got my book deal I did not. I feel like there is the belief that I've sold out, that there's the belief that I'm too mainstream. There's been a lot of lateral violence. That's been really, really hard. And I feel like some people in the community don't like the idea that disabled people can be personal brands or can have personal brands.

ASTRID: So, as a person who… I have a disability. I find that shocking and discomforting. As somebody who adores this industry and everybody who writes books and markets and publishes books, which I recognise you need a brand for, I find it really difficult. Can you explain for those listening to us, Carly, firstly lateral violence, and then I want to pick that with you.

CARLY: Yeah. Lateral violence is violence within a community. And it's not necessarily physical violence. From my experience it's never been physical violence, but it's been stuff like, you know, the jealousy, the tall poppy syndrome, the running down. The other day I had seen somebody who's very prominent mock my book.

ASTRID: Online?

CARLY: Online, in the community. And that's fine because I expect a level of criticism, but the perception the book was untrue and… it's just shit behaviour, you know.

ASTRID: So, I mean this is your memoir. Obviously anyone who writes a memoir is sharing their story as they've experienced it and as I think about it. That's the whole genre, right?

CARLY: But also it's not only about me, like it's got a bunch of people stories in there, some differ to me, some perspectives differ to me. I've made sure I've listed a bunch of people people can follow. You know, readers can follow. It's not just my perspective, and I've said you know go out and read other people's opinions.

ASTRID: You do say that frequently.

CARLY: Yeah. So that's been really, really hard. That's probably been the hardest thing I would say.

Also that my husband has not read the book1 I said to him, ‘The book is nearly eleven months old, what's happening?’ I think he's up to, he's up to the chapter that's about all the boys I've love before.

ASTRID: Oh, well maybe he got stuck there. Maybe he is the only person who gets to get stuck there.

CARLY: Yeah.

ASTRID: I'm sorry Carly, I'm still kind of struggling here. I want to go back to the idea that people think that your memoir or parts of the memoir are untrue. What do they mean when they say that?

CARLY: I don’t know whether it is untrue. I think there's an idea that I am inviting condescension by the offer to say hello. So, you know when disabled people in the street, perhaps people far more disabled than we are, are on the street and they receive money from strangers, you know, the begging kind of aspect or the assumption that they are begging but they're not begging, there's that kind of infantilization, that ‘Oh it's so great to see you out today’. I think their perception is that I am inviting those unwanted comments. But instead my message of say hello is stop asking me all these questions about my face and just say hello like you've said hello to the people before and after me. So, I think it's that, yeah.

ASTRID: So, now this is a question I suspect you get a lot but I am going to ask anyway. When you know experience that in person and online, like when people are not reading your book they're making an assumption, particularly with people from the disability community, how do you then get up the next day and go back to work and keep doing you.

CARLY: Well you know, it's probably really hard to be that miserable, pretty hard to be that miserable to hurt so many other people.

Recently I've actually called people out. I've said to… not to the people that are doing it, not to the people posting, but to the people who are partaking. And I said, ‘Hey, you’re meant to be my friend but you've commented on that post that really hurt me’. Some are still friends and some are not. I keep doing what I do. I tweet a little bit about it. I don't ever really share what's being said, but I think it's pretty obvious if you're in those communities. I warn people about these people as well.

ASTRID: So again, I just want to say again I'm quite disturbed.

CARLY: Sorry!

ASTRID Not by you, by the situation, and this happening in Melbourne, happening in the industry, happening online.

You are the editor of Growing Up Disabled in Australia, which will be published in mid 2020.

CARLY: Yeah. 2 June, I think.

ASTRID: It's coming up close now. Now, a disclosure to anybody listening. I submitted and I will have a contribution in that.

CARLY: It is very good.

ASTRID: Thank you, Carly. But it's not public yet and I haven't seen anything else at all in the work.

Now, as one of the editors in this series. And of course there was a decade ago there was Alice Pung, Growing up Asian in Australia. We've had Anita Heiss do Growing Up Aboriginal in Australia, Ben Law Growing Up Queer in Australia, Maxine Beneba Clarke do Growing Up African in Australia, and you also contribute a piece in there.

CARLY: Yes.

ASTRID: Now there'll be Growing Up Disabled in Australia. So, this is a fantastic series, and it puts you as the editor, you know, at the front and centre of this anthology that will have voices from throughout the disability community in Australia.

CARLY: I think there is 44 contributors.

ASTRID: That's exciting. But given what you've experienced with your own memoir this year, I mean, how are you approaching being that public figure with an anthology that has lots of other people also in it?

CARLY: I want their voices to be centred. I want to take a step back. And one of the things I'm planning to do is give people media training that have not been in the media before. I feel like the media is pretty terrible when it comes to reporting on disability.

ASTRID: Agreed.

CARLY: I joke that I do not want to see another article about ichthyosis, the skin condition I have, unless it's me that's written it. So, I want to you know give some media training to these people, they can choose to take it or not. I want to make sure that their voices are centred. That with the press release there's a lot of guidelines around how they report. I've actually just briefed the marketing person to say that these are the PWD – people with disability – Australia guidelines on reporting disability. I want this to go out in the in the marketing of the book. I also just want to make sure that everybody is comfortable with being… I guess in doing the marketing. As I know, we haven't written a book for no one to read it. So, I do want them to be committed in sharing it.

ASTRID: Carly, I want everybody in Australia to buy and share, and to go into schools.

CARLY: The other day I won a podcast grant through Arts Access Victoria, and the other person that won a grant, or a scholarship rather, was Olivia Muscat. And Olivia wants to do a piece on… A YA novel, and she's also contributed to Growing Up Disabled. And she said to me that she had studied Growing Up Asian for high school, and she's so excited that now she gets to be a part of this series.

The response… people have been really amazing. There was one person that I had… We received a great submission from them but it wasn't quite what we wanted, but I knew that their story was something that we wanted in the book. So, I message them on Twitter and I said – because that's the only contact I had – and I said, ‘Hey, could you give me a call about Growing Up Disabled?’ And they said, ‘Are you sure you've got the right person?’ And I’m like, ‘Yep’. I think they were really surprised that they were in it. And so, I asked them if they could submit something else and, you know, it was really nice and a really nice surprise for them I guess.

ASTRID: Oh definitely. Look, it was a nice surprise for me, Carly.

So, when you knew that you wanted their story in there and you know as you just said what they submitted wasn't quite what was going to work for the anthology and you ask them to submit something else, what does it mean not work for an anthology? Like as an editor, what are you creating with everyone's contributions?

CARLY: Well, I wanted to make sure that there were pieces from all around Australia. Someone asked me the other day if we've got someone from Tasmania and I'm like, ‘Oh gosh, I don't know’. No one really put where they lived in their submission. So, we might but I cannot guarantee you, I'm sorry Tasmania if I've let you down in advance.

I wanted to make sure that there was a wide representation of experience, so disability, for me, is around the social model and it's around the barriers being more disabling than the body. But I also knew that so many people were writing and mentioning what kind of disability they had, what diagnosis they had. And so there were a lot of people who had a certain type, there were couple of main disabilities that dominated, and I wanted to make sure... And dominated isn't in the sense that it's a negative thing, it's just that, you know…

ASTRID: More prevalent.

CARLY: More prevalent. And so, I wanted to make sure that there were a range of disabilities. I didn't want it to just be a physical disability book, so I made sure that we had a lot of experiences of physical, chronic illness, mental illness and deafness.

And also, I wanted to make sure we had Aboriginal voices, which was quite hard to get. People who are Aboriginal often don't identify as disabled because there's no word for disability in Aboriginal language, but we have got an amazing range of Aboriginal voices.

I wanted to make sure we had a large representation of women and non-binary people. So, there aren't so many men in this book. I think that there might be about 10 or 12 and the rest are women or on binary, gender non-conforming people.

I also wanted to make sure there was a wide age range, and there were people who submitted that were 12 and there were people that submitted who were in their 80s.

ASTRID: Oh, that's a great range.

CARLY: So, while I didn't take the 12 year old, I selected a person who's 16. I think they're the youngest. And I also reached out to someone who is a Paralympian who is also growing up, she's 18. And then we have someone, a few people that are in their 70s, late 60s and 50s. So we've got like an elder group and we've got young people who are still growing up, and everyone in between.

ASTRID: It really is exciting, Carly.

CARLY: Yeah. I'm really, really excited about it. I feel like the stories are just wonderful and a real range of stories that haven't been heard before. I think one of the hard things was, because the media is so bad at reporting on disability, it's hard to get very well-known people in there. And so, I really wanted, you know, I wanted to be a mix but you also have to have a selling point of well-known people. And so, we do have a few, but I don't think it's the way that Growing Up Aboriginal or Growing Up Queer has been, where there are such big names.

ASTRID: That's ok. Ben Law, who was a contributor to Growing up Asian eleven years ago. I've heard him in public say that, you know, part of his writing career took off because he had two contributions I believe in that anthology. And you know, a decade later he's editor of one. So, it's the starting place for unkowns.

CARLY: Yeah. Well that's what I said to my agent as soon as I got asked to contribute to Maxine's book Growing Up African, which I was very surprised about. I don't really often think about my heritage, my race, because disability has been such a big focus in my life. But I definitely, as soon as she asked me I texted my agent going, ‘Hey, can we pitch to Black Inc on Growing Up Disabled? And we did it within the week, and then we had an interview. And it was the longest embargoed period ever, because I think I've got the book deal in August and we couldn't announce until December last year.

ASTRID: So I want to ask you a question that I actually asked Maxine Beneba Clarke, and this is because of something that Alice Pung said – I can't get away from this series, I just love this series by Back Inc. I like it. I love it deeply and I think it's doing amazing things for non-fiction in Australia on all topics – but Alice Pung once said and I quote, ‘Own voices is really important, but the quality of own voices is quite important as well’. And as an editor, when you get these great submissions that are truly just fascinating stories or beautiful stories or important stories, but maybe they're not that well written.

CARLY: Yeah. It was important to me that we raised the bar and we had a great level of quality in the book. Too often I think because disabled people aren't given opportunities in the mainstream and aren't given, often given quality education or mainstream education, the expectation and critique around disability art and literature is quite low. And so, people get praise for doing mediocre work.

You know, it's the inspiration porn stuff. If I have an article out in The Age or whatever, and they share it on Facebook, I often see people in the comment and say, ‘Hey, I see Carly on the train. She's such an inspiration’. But I'm not an inspiration on the train because I'm just sitting on the train going to work. You know, it's not doing anything special. I'm looking at Facebook while I'm on the train. That's all I'm doing. And so I feel like we need to make sure that the quality in this book is really high, so that people know that disabled people are excellent writers. They need to know that we're capable and we have really good talent, and that we can go on to work in the wider publishing world. And in my little intro I have written I hope this book makes sure that publishers are confident to publish disabled writers.

One of the things that I wanted to talk about, and it's not really related to Growing Up Disabled, but the thing I realised when I was marketing my book was the amount of access information I had to provide to publishers and bookstores, which was really hard. I just wanted to go and sell my book, but no one seemed to know about access. They think that if you can get in the building in a wheelchair it's accessible, but there were venues that they wanted to hold my book launch in that were partly outside or didn't have an accessible toilet within. And I said I want all venues to be accessible for me as a speaker and also for my audience. And I found that really hard. I think we really need to change the publishing world because you know there's some bookstores people can't get in because you know mobility devices can't be used in there or there's no accessible toilets.

ASTRID: And how was that received? I mean apart from the fact that it's just extra work for you.

CARLY: Yeah well, I was really tired about it. It was good. I want to keep doing some workshops. I've done two so far around publishing and access. I want to talk to editors about language as well, because I'm really tired of seeing books in 2018 and 2019 and so on with disability slurs in them. If they pass the editors table that's irresponsible. I’m really sad to see the level of ableism in books still. And you know, while we often see white people being called up around writing racism or speaking on racism, you know speaking racist things, it's not happening in disability, around disability, slurs around disability. Yeah, respect. It's not... So, I found it hard because I didn’t want to put the booksellers offside. But I still needed to make sure that my audience could get in.

There a couple of really nice things that happened. I now have a rider, which is quite funny. It's not very rock and roll. It's literally a blanket, a cooling pack, and you know people, I need air conditioning and stuff. I went to Brisbane and it was in the library. Initially it was meant to be in a bookstore that was inaccessible, and they moved it to the library. There were 200 people there, about 20 wheelchair users, six people had ichthyosis, and that’s amazing because it's a one in a million condition. And my publisher, one of the sales reps from Brisbane has said, ‘Oh my gosh, I've never seen so many wheelchair users in one spot before in a public publishing event’. It was really great. The Wheeler Centre were great here, and Writers Victoria.

I also got my publisher to give away some copies for people who couldn't afford to go. In the later sessions, because I had such a long book launch, that was another thing. So, book launch events kind of go for three weeks maybe when you do your events and media and all that. And I said, I can't I can't take time off work, because you're not paid during the book tour really, and I can't take that much time off work. And I also cannot be bothered getting on the plane every day. I'd be stuffed, my skin would suffer. And so, I stretched it out over a very long time. Four months which was good, maybe five actually. It was very good, but it was very long and that meant that I had rest and I got paid well. I was able to do my part time job and writing and speaking and whatever.

And then all of my events… I learnt from each of my events. And so at the end, towards the end, I would have a seat seating area for people who couldn't wait, because a lot of people were saying I can't stand to stand long enough to come and meet you. And I'm like, ‘Well I know what that's like. Okay let's put some seats down’. I also did image descriptions of the stage as well if people requested it, but then I started doing it just regularly. And I recorded them. I haven't put them out yet because I want to make them transcribed. Yeah. It was a learning curve. So, I paid everybody who interviewed me, because I believe in that. Even disabled or not, so much of our much time is expected for free. So I made sure that they were paid.

ASTRID: Which is honestly a double whammy, because so much of a writer's time is expected for free, and then also anything that people who have a disability from the disability community do in public is often expected for free. So, it's like the double… often not getting paid.

CARLY: And so that came out of my money, that payment. Yeah. But it was it was really good. And I and my Mum come with me. She's now a hashtag #festivalmum. And you've met #festivalmum.

ASTRD: I have met your Mum. She is very much #festivalmum.

CARLY: I'm going to the to the UK next year and she just announced that she's coming. And yes, she has loved it. It's been really fun having her as well. And she also tells me when to rest, like I'm not I'm not very good at that. And also my doctor, my dermatologist was very concerned last month because I have experienced a lot of pain this year, and it has been probably due to my busy schedule. And I justified it like, ‘Hey, I travel a lot but every hotel room I get has a bath’. And she's like, ‘Oh, is that meant to be good?’ I said, ‘Yes, it is, because I actually have this time to take a bath and I don't usually do that at home’. So that's all my rider as well. A hotel hotel room with a bath, which usually means I get some really glamorous hotel room, because there's only a few in the hotel sometimes. So that's this thing fun.

ASTRID: That's fantastic. And that raises another question for me not just about how you look after yourself during really busy times, but how you maintain such a prolific output writing but also speaking and other public engagements. Now, I know you are very lucky. So, you've mentioned before you write in bed.

CARLY: I do.

ASTRID: As a person with a chronic illness who sometimes loses a day when my brain basically is not working very well, how do you fit it in? And what's your process when you write from bed?

CARLY: I wrote most of the book, most of the first draft of the book, in a studio. I met this woman on the steps of Connie Johnson's public memorial. And she said that she's an artist and she works in the studio in the Nicholson Building and she asked me what I was doing. And I said I'm a writer, I'm writing my first book, and she goes, ‘Come and write in my studio’. So, I didn't have much time left with the deadline, so I probably wrote the majority of it in there, the majority of the first draft in there. And then the rest of it… I'm lazy and I write on my iPad, and there's a lot of scrolling involved. I think now on the Notes function you can do a search, but back then it was just like scrolling through 50,000 words or 90,000.

ASTRID: That is time consuming.

CARLY: Yep. And actually before that, before I went to the studio, I just had a series of separate notes in a folder called ‘book’. It just like different chapters. And then I was like, ‘Oh I actually haven't written as much as I thought’. My text is really big because I wear glasses when I read print but not when I read e-things, and I thought that I had written a lot more than I had. And when I put them all together I'm like, ‘Oh, is this it?’

I think for me it's I don't write that much anymore, and I really miss that. I miss writing. I've got a month's holiday and I want to do some writing. I've worked for Melbourne Fringe in a part time capacity, so two and a half days a week, and then the rest of the time I write or speak. Mostly speak. And to be honest this year I’ve rehashed a lot of speeches because it's more cost effective, but I have written a few good speeches.

But this year really I've probably written three things. I've written a piece on Savage Garden, because that was my goal to write that. Remember we talked about that in Ubud?

ASTRID: Yeah.

CARLY: And they said in Ubud what would the thing be that you want to write if you weren't writing activism? I’m like, I want to write about Savage Gardens.

ASTRID: And now you’ve done it, and done that in what, two months?

CARLY:  Yes, less than that because their anniversary was that month. So, I had to write in a month.

I also wrote a submission for the Horne Prize, which was a piece for the Melbourne Writers Festival, and then I rewrote it to be a submission for the Horne Prize and it became a finalist. I've just pitched it to somewhere today. It didn't win. And I also wrote a eulogy for my friend's funeral. So, they are the three big things that I've written this year that I'm probably the most proud of.

But I have written a lot of Instagram posts and Facebook posts and things, and actually I did write something the other day about taxi driver discrimination that was meant to be for my blog but I just sent it off to news, because I thought I might as well get paid for it.

ASTRID: Do you forget to republish things on your blog after they have been published in a major outlet?

CARLY: I used to do that, yeah, but not so much now because I feel like there is no time. It’s like you're always chasing the next work in pace you'll never get any. Yeah, so I used to do that a lot but now not so because I hadn't written anything to duplicate.

I want to… Sometimes I screenshot bits from my book, like the PDF of my book, and I put them on Instagram or whatever, but not often.

ASTRID: So, we've spoken in depth about your blogging, Say Hello your memoir and a bit about the forthcoming anthology that you're editing. When you think about your public career as a writer.

ARLY: Gosh, it has been a lot, hasn’t it?

ASTRID: It has been a lot, Carly. When you think about your public career, what are some of the – in terms of writing and maybe speaking, because obviously speaking involves the writing – what are your goals? Like what you what to do next year, which is 2020 and then 2025? What will you put out by then?

CARLY: Next year I want to do fewer speaking, because there was one week, like last week or the week before ,I went to Sydney twice and I was due to go to Sydney three times. But the smoke meant that I didn't have to go and I could do it from home. I want to have more of a rest. I want to do fewer speaking things, and I want to do more projects that allow me to earn the money that I need to while still being creative. Because I feel like when you're doing all these little speaking gigs you're doing them day after day after day, you just don't get any time to do the writing. I also really want to write a picture book.

ASTRID: Oh, what age?

CARLY: Like five, little Carly. Three to five kind of age. And my agent gave me a present the other day and in it was a book, a little book to write in, and she said, ‘That's for your picture book notes’.

ASTRID: Oh, that's gorgeous. Now your agent is Danielle…

CARLY: Danielle Binks. Yes, she's great. She's my number one agent, fashion adviser, photographer. She is so great.

ASTRID: Bright pattern lover.

CARLY: I said to her the other day – because we both go over the top, you know, when we see each other in fashion. And there was this weird kind of exhibition at Melbourne Central where, I don't know it's got these props and it was a bit like a cemetery. I didn't really want that but it was really great colours, so I said, ‘Okay if I stand over here can you get everything?’ And I said, ‘Did you get my shoes in?’ And she said, ‘I'm most offended, don't you know what a great photographer I am? Anyway it's quite funny. So, we often dress matchy matchy, because we have a lot of the same clothes. And there has been times at the Melbourne Writers Festival where we've turned up in the same thing on the same day. And there is a little dedication to her, I say may we continue to turn up in the same dress.

ASTRID: Of course. So, a picture book.

CARLY: A picture book podcast. Yeah. And I want to do my PhD.

ASTRID: Yes, now this is fascinating.

CARLY: I finish up at Melbourne Fringe in 2021, I think the start of next year, the following year. Someone give me a job.

But it's funny because I am very risk averse, and I'm very sensible with my career. I went to the government to get a job, to get a serious job, and I stayed there even though I hated it for a very long time because then I worked enough to quit my job and do part time.

ASTRID: You strategise.

CARLY: Yes. And my book was one of the things that I wrote in my list of making money, and I did that. So yeah, I wanted to I wanted to do my PhD when I'm not working at Fringe, because hopefully I can get one of the grants to do that. I want to do that on social media representation of facial differences.

ASTRID: Now here's a question. Depending on what department, you discipline you do your PhD in, you might be writing a thesis, which could be published as non-fiction… You want to do creative? Non-fiction, like half thesis and then half like book/

CARLY: Something that will get read.

ASTRID: That is so true, thank you.

CARLY: You know what I mean, like I don't want it just to… No one's ever read my Masters thesis. It was good, but no one's ever read it except for the marker.

ASTRID: Supervisor.

CARLY: So I want to... I want to do it so it's public. I also want to do more training programs. I did this, I worked with a really great company for two years last year and before in training. And that was a really good way to have more time because it was very well… and I know I keep saying you want to do it when it's well paid, but it's very important that we have financial stability to maintain our health, to maintain our sanity, and then we can do our creative stuff. So, this meant that I would only go out once a month or twice a month and I'd get enough money to live on without having to do a speech every week.

ASTRID: That is a great plan., Carly. I need that plan.

CARLY: Yes. I want to that. And I want to do some more mainstream, I want to do The Project, I want to do Playschool.

ASTRID: Playschool!

CARLY: I got to see Big Ted when I went into the ABC earlier this year. He's a very big. But what I was shocked about is Little Ted is bigger than I thought he was. Little Ted is not little. Little Ted is like Big Ted and Big Ted is Giant Ted.

ASTRID: Oh, that's funny, that is actually funny. Carly, I can't wait until Growing Up Disabled is public in Australia, but also for your picture book and your creative non-fiction PhD and everything else that you do next.

CARLY: I also want to rest. That's what I want. I'd like a big sleep and the ability to write. I'd like to go away somewhere and just write, but no doubt I'll just be scrolling on my phone.

ASTRID: Thank you so much.