Carly Findlay: It’s Liberating Not To Care So Much

Abbie invites writer, activist, and advocate Carly Findlay on the pod to talk disability, ableism, tokenism, fashion, AND roller blading.

Topics such as suicide, disability discrimination, and ableism are mentioned in this episode. If this raises any issues, please visit Lifeline's website via this link https://www.lifeline.org.au/ or call 13 11 14.

Carly Findlay: It’s Liberating Not To Care So Much

ELISE
Producer Elise here. Just a quick content warning before this episode. The following interview contains a brief discussion of the death of an infant with icthyosis. This discussion occurs around the 20 minute mark of the podcast. If this raises any issues for you please feel free to skip forward a few minutes to the next section of the chat. Throughout this episode there is also discussion around ableism and disability discrimination. If this raises any issues we’ve included a full list of resources in the description of this episode.

SHOW THEME MUSIC PLAYS

ABBIE
Hello, Carly! Carly Findlay. I'm so excited to have you on for a number of reasons. First of all, I've been following you for a long time. I think you do such amazing work on Instagram and in your book that I need to read, actually, but also because you've just told me that you've started rollerblading.

CARLY
Yeah, I started last year in lockdown. But I haven't been able to go this year, because it's very hard to find a place now that all the playgrounds and stuff are shut, and we've only got five k zone. so now I have a place to go. And I can roller skate again

ABBIE
I tried to start last year, and I only did it a couple of times. And then I think lock down happened again. I was in Brisbane. And I wasn't good enough. And now I'm kind of scared to get back into it. How long did it take for you to be good, because I don't know if I should give up or not

CARLY
It took ages. I mean, it took me putting on my skates a few times a week. And getting good like that and going out with people as well. I don't want to do it alone in case I fall down. But I'm much better than when I started

ABBIE
Because I want to do it on the boardwalk at Bondi, but I'm scared that I'm gonna that's the only place that's flat near me. I want anyway, this is not about this is not a roller skating podcast

CARLY
I was really inspired by the women on Instagram who were roller skating. That was what inspired me. And then I thought oh, I could pick this up. I did it when I was 12... it is not the same

ABBIE
It's like we're purposefully making ourselves toddlers again. Like we're like learning to walk we're learning to skate like it's literally like it's a whole new movement. It's crazy. Anyway, again, this is not this is not a discussion about rollerblading. This is a discussion about your CARLY Findlay I like I said I've loved you for a really long time followed you for probably I reckon 18 months, maybe two years. Anyway, we got talking in our DMS the other day and I thought Fuck, I'd love to have you on the podcast. I've always thought you were so busy. So I've been like, ah, you've been on my list. You know what I mean? But I've got you in lock down post rollerblade ... Roller skates! Sorry. Roller, skate or blade?

CARLY
Roller skate. I've got so much on today. And as a writer, I rarely write and today is my writing day. But I've had like so much on that I just haven't written this thing. I've got a writing deadline after this.

ABBIE
I'm sorry. All right. Well, we'll get we'll get it done quickly. I have so much to talk to you about I posted a little story saying What do you want me to talk to you about but also I watched when you were in You Can't Ask That. I obviously follow you. So I already had an idea of where and talk to you about. But I think we'll start off by like literally half the questions that people wanted me to ask you about was about your fashion. So I think we'll start off with that. Literally, it was like how do you mix and match patterns? Someone said, I know you were in the Gorman Group a few years ago are you still in the Gorman Group, people. And also where where do you get inspiration from because you're I think Elise described you as the poster girl for Gorman is how she described you way before we started recording.

CARLY
Okay, so I started wearing Gorman probably like five or six years ago, when I could finally afford it because it's expensive. So when I had a you know, I got a I got a husband. Not that he keeps me. We've got a double income right?! So I didn't get a husband so I could get him to keep me that's not the case. It was easier when we had a double income. So I started wearing about five years ago, and I made some really great friends through that, like other people that wear Gorman, other women, mostly that wear Gorman. And it's been amazing. But last year, in about December, I would say I was pretty despondent with how they did disability representation. So they were doing stuff and NAIDOC and marriage equality, really important issues, but not ever on disability, not making their their stores accessible, not making their content accessible. So I took a stand and I made a post around how disappointed I was that they did not recognise disability day, which is in December. And as a result of that, I said I'm not going to buy any new Gorman I have like a lot of old Gorman and I still wear that but I have I've only bought one actually, that's a lie. I bought one new thing from the shop because Adam gave me a voucher for Christmas. He doesn't read my blog, so maybe that's why he used it,

ABBIE
Adam, Adam, keep your finger on the pulse. Please, Adam.

CARLY
I know. I know. I'm gonna send him some links to non Gorman clothes for this Christmas. And then I lost my jacket, one of my favourite jackets. I lost it on the train at Christmas time. And I bought a secondhand one on eBay. So

ABBIE
secondhand doesn't really count I would say

CARLY
So. I haven't bought any new Gorman this year except for that voucher. So I did I put like a little bit of money, but yes, overall not shopped from them. And I'm finding other brands but I am still in the Gorman group. I mean, still in the Gorman Outfit of the Day group. It's still good.

ABBIE
People also want to know, the number one question this was asked like three or four times was how do you figure out how to mix patterns and colours?

CARLY
Such a good question. Okay, so I don't have many patterns and colours on today. I have a lot of colours. But only one pattern. There's only one theme.

ABBIE
All right, all right, we were like Elise and I both just went.... and you're like I'm very plain today and I'm plain Jane.

CARLY
This is a big, big colour burst. This is by Lordy Dordie. I've never bought from Lordy Dordie before but I bought a thing a dress the other day from Lordy Dordie and a t-shirt as well and I bought something for my friend and agent whose birthday is very soon and she does really bright patterns. So I put on things that I don't know just make me happy. I find a lot of different patterns. Maybe that have the same colour or the same theme. So I don't have it right now in front of me but I'm wearing a Care Bear right now because I'm so into Care Bears. But I did have a wattle brooch on because this is like Australian print.

ABBIE
Oh so it's a theme

CARLY
I go with the theme. So if I'm wearing Australian print I'll wear like an Australian print brooch, or I wear a different print in a different brand, but still Australian print, like the other day yesterday, I had on a very bright mermaidy print kind of dress, top. But it was all rainbow so I wore it with the rainbow necklace because it was very much like a rainbow.

ABBIE
This is helping me a lot because I don't ever wear patterns I'm too scared but I think the theme makes it look cohesive is what we're learning here. Elise is good at patterns and colours Actually,

CARLY
Yeah. And I wear like I do have like black layers or coloured layers. Sometimes today I just wore black because it's been a busy day couldn't really want to, you know, I didn't really want to decide much this week. I get a lot of underlayers like coloured underlayers from Uniqlo and other places. I just mix and match. I do love roller skating in different patterns as well. Like I wear my dresses when I skate and

ABBIE
CARLY should we start a roller skating podcast? I feel like we're obsessed with it. Sorry, Elise wanted to ask you something

ELISE
Carly question Do you know of Iris Apfel the newly 100 year old because I was gonna say like, She's my style icon is that someone you aspire to?

CARLY
I remember watching Bill Cunningham's New York a few years ago at the cinema. So Bill Cunningham was a very famous fashion photographer in New York. And he I think he lived till he was nearly 100 as well. And he'd cycle around on his bike and he'd take photos like street fashion. And he profiled Iris Apfel who just turned 100 and she just like more is more with her. You know she puts on more things when she leaves the house like Coco Chanel says take something off

ABBIE
She adds. I need to look this person up so I can get some inspiration about patterns and colours and stuff.

CARLY
But also like I really love just seeing other people wear clothes like regular everyday people, friends, friends inspire me for like wearing clothes. And I feel like if I'm with my friends that I met through the Gorman group, we often like play it up. And we dress like more is more is more. And then when we're out together, like people will know that we're with that group.

ABBIE
Yeah. it's like a uniform, a very subtle, uniform.

CARLY
If someone's wearing beige, we know that that's they're not with our group,

ABBIE
We can identify them, we can see we can see that they don't belong. If they're wearing beige, sorry, sorry, out of the Gorman group I'd be fucked. I'm always in black, beige, or like, I'll put on like a purple just for Elise, because Elise wears purple all the time. It's like her thing

CARLY
But I have, like, at times, I've worn black and people have asked me if I'm okay, like, am I okay? I needed a black top. I had this really great vision of having this like black high low hemline top, but I didn't know where to get any because who sells black tops in the shops that I shop from. I don't know, I had to ask someone where do I get a black top? But it was very. It wasn't just like a black tee. Yeah,

ABBIE
Yeah, you needed a high low moment. That's hilarious. Well I'm glad we can answer the questions because literally, it was half the questions were, were fashion related.

CARLY
I love that most people ask that. It's just great. Also I love that more people like now stop me to say I love what you're wearing or comment than ask me about my appearance. And the other day on Wednesday I was just having, it's just been such a shit time in Melbourne. And I was just having such a ugh week. And I wore this ridiculously big tutu which is purple and this top I don't I don't know what top I wore. But yeah, it was for Wattle day so I was wearing... I can't remember now. Anyway, I put it on Instagram. But this guy yelled out of his car or maybe in his car. "Hey, kids see that woman in the great purple skirt!"

ABBIE
Oh, my god a positive cat call! It's weird how those little things make you so happy in lock down. I had a similar thing. I was screaming along to a song in the car, my windows were down and the man next to me the lights put his windows down. I thought he was gonna do something weird. He just went thumbs up and was like Yeah, and I was like that made my day. It's so sad that that was like I was giggling the whole drive home. So you touched on on Gorman before but you do a lot of work in the disabled space. And I was obviously like I said watching your the You Can't Ask That that you were in. God Elise and I were saying how amazing You Can't Ask That is. You don't forget that it exists but you don't you don't think of it ever to watch then once someone sends you one you end up in a rabbit hole of You Can't Ask That. But I saw on on there, that you said that some people were saying that you shouldn't be classified as being disabled. I wanted to see if you could speak on that. And also let the audience know what your condition is. I assume everyone knows who you are. But that may not be the case. Sorry, I just assume people know my guests,

CARLY
I was born with a rare skin condition called ichthyosis. And I don't know the amount of people that have it in Australia, but it's very rare. It's quite severe. I'm on the severe end, there's lots of types of ichthyosis as well. And I have a very severe type my type's called Netherton Syndrome. And while I've had it all my life, and it is very painful and itchy and inflamed, and it gives me a different appearance, I never identified as being disabled until probably when I was about 25, or 26. And that was when other people who were disabled and I realised, like our barriers, and our bodies are very much the same, even though we didn't have the same conditions, they had different medical conditions to me. We experienced things like lots of hospital time, lots of specialists, lots of discrimination, the time off work time off school, and then I'm like, oh, wow, okay. Yes, I'm actually like, chronically ill. And then when I started writing more around this stuff, I realised that, you know, I too, was disabled, because we learn about bodies and barriers. So our body isn't at fault. It's the barriers that society creates, like environmental barriers, like a lack of Auslan interpreter or a lack of lift or stairs, or a ramp instead of stairs or attitudinal barriers, like the, you know, the way people talk about disabled people in the media, so they're the barriers that are disabling for us.

ABBIE
I wanted to ask you and this is genuinely a question that I had when you were speaking about this and what I wrote down was why is it important that you are able to identify with this community? Is there a danger or benefit in labeling different degrees of disability? Yeah I guess just labeling?

CARLY
Yeah, great questions. So identifying a disability means that I can ask for what I need now, like, I went through school going, Well, I'm not disabled so why would I need any extra support? when I actually did need extra support. And you know, I can, I don't particularly get any kind of support from the government. I don't I'm not on the DSP. I don't get the NDIS. But I do have a disability parking permit now. Because when it's very hot in the summer, I need it because I can't walk very far in the heat. And so I actually didn't know this. But if you put up your parking permit in any spot, so you're not even taking an accessible spot, you get free parking I'm like oh my god. So that's probably the only kind of tangible benefit to this situation.

ABBIE
Yes,

CARLY
But also it is about identity. And it's about community and it's about pride. And you know, like Disability Pride means that you are comfortable with yourself and you don't feel shame in asking for what you need and apologetic for how you look and how your body works and how your mind works. In terms of like classification? So many people are, I think, scared to call themselves disabled if they are disabled, because they don't know what the umbrella of disability is. So, you know, disability means that you could be physically disabled, intellectually disabled, you could be deaf or hard of hearing, you could be blind or have low vision, you could be neurodivergent, so, autistic or have ADHD, you could be chronically ill, you could be terminally ill. And, I mean, I think there's a danger in labeling like severities, you know, like, high functioning, low functioning kind of labels. But absolutely, I recognise my privilege in that I don't have as disabling barriers as other people. And, you know, my body is sometimes more reliable than other people's we are all you know, one one community I think.

ABBIE
May I ask why there's a danger in differentiating high functioning and low functioning?

CARLY
I don't feel like I could talk to this because I'm not often

ABBIE
Okay,

CARLY
in that community, but I feel like it may play down the barriers and the discrimination and the struggles that people have. And also like I get, I get sometimes people telling me "Oh, my brother, who's intellectually disabled is far more disabled than you. I don't know why you call yourself disabled." Like I get that there's, there's a level of that, but also, like, I don't like playing the oppression Olympics, and there's really no wins in having it worse. So yeah, I absolutely acknowledge my privilege and my ability to do things more than other people can do things but also the discrimination and the barriers that I've faced and very similar to what other people have faced.



ABBIE
Yeah, absolutely. And it makes sense when you say things like accessibility Yeah, and needing extra help and be able to ask for that, if that makes complete sense yeah.

CARLY
If don't have the language to do that then how can we ask for the support you know, like I went through my whole life not through any fault of my parents, you know, they raised me as as any other child but I didn't really know how to ask for things that I needed. And so if I said if you know, if I could have ticked a box that allowed me to get you know, not have to sit outside during sport time like watching the sport in the heat, then that would have been much easier than, you know, fighting for what I didn't get. So yeah.

ABBIE
And I guess as well, it allows you to identify yourself as part of a community and then learn more from other people in the same community as you, right? Like,

CARLY
Yeah, absolutely. Like, I feel like since I've started writing about this stuff, I've met so many people I've learned about myself, but more about other people like to be a writer, you have to read and you have to, like, reference a lot of sources and do your research and all of that. And it's been amazing to meet so many people yeah.

ABBIE
Yeah, it's amazing. Someone asked something that I've actually heard a bit about, from TikTok to be honest, and that is inspiration porn. And I was wondering if you could touch on that and talk about it, because someone said that you spoke about it. And they learned about it from you.

CARLY
So Stella Young, who was a disability advocate, activist, writer, comedian, she passed away in 2014. And she was very young, she was only 32. And she really changed the way I believe she really changed the way disability was shown in the media, she was very present in the ABC, and also other places and was really vocal and was integral to the implementation of the NDIS as well, the National Disability Insurance Scheme. She did this really great TED Talk, which I think stemmed from an article that she wrote for the ABC, called I'm not your inspiration, thank you. And she said that disabled people do not exist to inspire non disabled people. So we are not inspiring for just getting out of bed for doing our job. So sometimes when I write for the media, you know, they share a little article on Facebook, and my thumbnail will come up, the picture of me will come up, and people will say, Oh, my God, I see this woman on the train. She's so inspiring. But I'm not doing anything

ABBIE
You're sitting on the train and losing a jacket losing a Gorman jacket.

CARLY
It's like they're not inspired for great things. It's like they're just inspired by us doing the everyday things because they think that our life is less than there's. that "Oh well if CARLY can do that looking like she does. Well. What am I complaining about?"

ABBIE
Yes, this is what I want to talk to you about as well. And this is something that I've spoken about with lots of different people from all different intersections as personal friends not on the podcast before but I wanted to speak about and someone asked this in the question box as well. How you feel when people say, Wow, you're so ama.. how are you so confident?

CARLY
Yeah, that's weird. I just,

ABBIE
it's weird.

CARLY
It is a like a judgment on how can you be so confident when you look like this? Or... so when I was younger I reckon it was till I was about 30. I know I only look about 25. But I'm actually nearly 40

ABBIE
Are you really nearly 40?!

CARLY
Yeah. And that's also one of the great things about ichthyosis my skin renews really quickly, and I look very young,

ABBIE
beautiful.

CARLY
I'll come back to that confidence question, but

ABBIE
sorry,

CARLY
no, no, that's okay. A few years ago, I got invited to my high school reunion like a 19 year reunion. And I don't know why. But anyway, like, I was just about to release my book. And I'd done you know, was doing really fun stuff. I'd been on You Can't Ask That. Anyway. So I was in the chat like we're in a Facebook chat. And it was just like I was at high school. They just kept on ignoring me, you know, speaking as though I wasn't there, I'd say something a no one would respond. So I found a photo of me like from school 20 years prior. And then I found a photo like I took a photo of me that that day. And I said hey, I just came across this photo from school. I haven't aged.

ABBIE
Suckers

CARLY
Not sure if they responded, but I left the group. I'm not

ABBIE
Dropped that bomb and then leave and and Carly Findlay's left the chat.

CARLY
Yeah. In terms of the confidence thing, like until I was about 30, I would like only wear quite muted tones, you know, so I would prefer grey to... because I didn't want to stand out more. So I had all these great clothes. I'm like, Oh, God, I can't let someone look at me more than they already are. Yeah, so I just thinking why did we do that? Like it's kind of punishing myself. And then I you know, I have people say, Oh, you know, it's so amazing people like you are out there. I had someone, we were talking about this on Twitter the other day with someone was talking about how they just get really condescending remarks around being in a wheelchair. And I said when I worked for Kmart when I was at uni. I had this customer that came in and I said oh it's so good to see someone like you out not locked away somewhere

ABBIE
Oh, my God the things people say the things but that person had that thought it computed in their head, and they use their linguistic skills to put it out of their mouth so that you would hear it. Are you fucking Ah,

CARLY
but they think it's a compliment and they think it's like the whole you're so confident thing that I mean they they think that's a compliment because they they couldn't possibly do it. But you know what? It's a real reflection on them. So I feel like and people have contested this and I absolutely know that this is a judgment that I'm going to make of other women. But when other women, and men, cannot, and non binary people gender diverse people, cannot be in a space without makeup because they are like, Oh my god, I'm gonna look hideous, but they've already got beauty privilege, like they already see themselves or people like themselves in the media online, they're not made fun of, that shows me how they think about people like me. So a few years ago, I responded to an article that was written on a women's website where a person was like, so worried about their face without makeup, because of what they might look like. Now, obviously, that's internalised shame that they have. And, you know, perhaps they need to talk about that. So I responded to that through an article and I had, you know, I'd said, the way you you talk about yourself, when you have beauty privilege is very indicative of how you feel about people with facial differences like me. While your first word problem was acknowledged as a first world problem, I remember that day that I had received some, you know, hate speech around my face, but also, there was a baby, with ichthyosis in India that was killed. In different cultures ichthyosis is seen as such a terrible thing, you know, a curse, and so have some perspective. But also think about the way you talk about yourself, because it really reflects on how you feel about other people. So when someone says, Oh, you're so confident, I know that they're not confident in their own skin. Like if someone has to use filters all the time on their photos, because they can't show their own face. Like I don't know how oppressive is that? How

ABBIE
Absolutely adds added to the cycle, isn't it

CARLY
when I have a photo with someone like if someone says, “Can we have a selfie?” I'm like “yup no beauty filters.” I've had people go, "how do I turn this off my phone?" because they they're, you know, just on the phone naturally, but I will not accept someone putting a photo of me up that's airbrushed. I don't want that.

ABBIE
Yeah, I saw he actually said for your wedding photos. The photographer asked if you want anything airbrushed and you were like, no, why the fuck?

CARLY
I mean, they weren't rude about it. But it was just

ABBIE
No, I that's a normal question, Elise is getting married soon. Actually, that's a normal. That's a normal question, isn't it?

ELISE
I had a photographer ask if I was gonna be wearing my glasses on the wedding day. And I had an optometrist say, Oh, you can get contacts for when you want to look pretty.

CARLY
Oh my god.

ELISE
And I was like, cuz I'm an uggo now like, what? Just check my check my eyes let me out of here.

ABBIE
Holy shit. Check my eyes, let me out of here.

CARLY
I feel like though we have to play down our our bodies and our disability and the things that make us different to fit in. And, you know, honestly, that's tiring, like, Fuck that. And that stems back to me not wanting to wear these bright clothes because I'm just like, I don't want to stand out any any further. But now I don't actually care. Like it's, it's just exhausting. When I was younger, I wouldn't wear black because I would leave skin on my clothes, you know, from my scalp and and then I just stopped being shameful of that. It's just really like liberating not to care so much about that stuff. I mean, I use ointment. And so that makes me very shiny. And it also makes some of my clothes very shiny. So sometimes I'll get patches that make me look like I've wet myself or, you know, I've literally had to buy a new outfit one day because I just had this massive patch. But you know, overall, no I don't really care and, and Adam my husband doesn't really carry the In fact, he says, you know, he finds part of me in his pockets.

ABBIE
Oh, it's actually quite cute. That's really sweet oh my god that actually made my like, heart go pitter patter a little bit.

CARLY
A friend of mine was saying she's just moved inter-state last year. And she was saying she misses finding oiliness from me. And skin flakes.

ABBIE
That's really sweet I don't know, if I'm just lonely in lock down. Or if that's really cute, I can't tell I can't tell.

CARLY
like I said to I could just send you a pack of my skin flakes in the mail

ABBIE
Express post please

ELISE
That could be both a threat and a gift.

CARLY
Could be a biohazard.

ABBIE
Who knows? It could be illegal. Who knows? Oh god I feel like I could talk to you for ages but I'm trying to get through the topics I want to speak to you about. The next thing that I want to talk to you about was like tokenism in general. But in particular, obviously, the Camilla show at Fashion Week, which was about six months ago, Oh god who knows time is time as a mystery.


CARLY
June.

ABBIE
Yeah, it was freezing cold cause I went fashion week that week and it was so cold I wore a fur jacket. Obviously fake everyone calm down. So basically what happened for those of you who don't know is during the Camilla show and I believe one other show as well,

CARLY
There was another show I do not know. And I don't I actually don't know whether that show was only Camilla It might have been a range of designers.

ABBIE
Yeah, I think it was I double check this option. And I'm pretty sure it was one or at least one other designer as well, but basically, at Fashion Week, and it involved Camilla. There was a disabled model who was in a wheelchair and obviously to show diversity. But the runway wasn't accessible.

CARLY
There were two there was a

ABBIE
Oh there were two.

CARLY
Yeah, yeah.

ABBIE
Okay, so there were two but the runway wasn't wheelchair accessible. There were feathers I think or confetti there was something that was stopping the wheels

CARLY
like paper or plastic or something. Yeah.

ABBIE
And the model came out in defense of Camilla. So I want to talk to you about that. And I guess your thoughts on that. I'm assuming I know what your thoughts are, but I would love for you to tell me them.

CARLY
I mean, I, they had that the model, Lisa was one of those people, one of two people who worked as access advisors or consultants throughout. And I think if they've been working on it for so long, why was it that that we saw, why didn't we see accessibility throughout? Like, why didn't we see image descriptions on Fashion Week's Facebook and Instagram or captions on their video? Or actually, Why wasn't I invited? Why didn't we see more disabled people there? Like it was this for non disabled audience and you know that tokenism? I don't know so many questions, but also, when somebody who is disabled encounters inaccessibility and excuses it, then it says to the wider public, it's okay. When I encountered discrimination, I will often make complaints because I know it's not only going to, well it never benefits me, but it's going to benefit someone else. I'm going to speak up about stuff because it isn't just about me. It's about the wider community. And disability is so homogenised that people just think we're all the same person. You might hear like Kurt Fearnley gets mistaken for Dylan Alcott all the time, because they're both white men, wheelchair, wheelchair users and sports people, you know. So when somebody speaks about this, and they say, Well, I didn't see it as a problem because it didn't affect me. It's showing Well, it didn't affect the wider community. And many, many people from the wider disability community were angry, rightly so. Because they have experienced that they have experienced not being a part of Fashion Week, they've experienced inaccessibility at events where they've had to walk or wheel upstage and they couldn't get on, and they've experience people laughing them off, laugh, you know, laughing those inaccessibilities off. And so when somebody says, "Well, it didn't matter for me," it's saying perhaps it doesn't matter for the community. So it's so important that we see this carry on all throughout the festival, any festival, any event, because why was it that that was given airtime? Why wasn't it that there might have been accessible events? I don't know, because we didn't see that. That's what tokenism is, right?

ABBIE
Yes. That's to say so though, how would you in a I guess in a nutshell, I guess differentiate tokenism, from diversity from genuine diversity when it comes to the disabled community.

CARLY
So tokenism is when someone just gets us in for a tick box thing, you know, diversity is when it's just embedded. When we are there when we are present when we're not there, specifically for a day or an event or disability day. But we're truly included and asked from the start, like, "what are your access needs? How can we help you? What do you want to see?" All of that. I did an event a few years ago at Melbourne Fashion Week, it was three years ago the other day, and I reposted it, the video on my Instagram on Tuesday, I think was the day. So in 2018, I pitched an event at Melbourne Fashion Week, and I pitched an event called Disability on the Runway. And I chose it but they didn't want to use the word disability. It was then renamed to "Access to Fashion" because you know, disability is seen as such a taboo word. I was like, Well, fuck that I'm using disability, I'm so it was called Access to Fashion and a subtitle "Disability on the Runway." You know, I organised a lot of it, it was 19 models wheeling and walking the runway, it was amazing. We had like 20 I think 21 or 22 news items. So we had things from the local news like in Gippsland, or Launceston where people were from to Melbourne based news to national news so the ABC and we also made it into the New York Times. It was amazing. But Fashion Week did not acknowledge the event one bit. And so that is tokenism. Lke when our work is not noticed when when it is over there. And since then, yeah, there's been a couple of, you know, models in shows. But also, yeah, sometimes it's token. I've not been invited back, actually, when we went as a person that was like curated in the program, we got given tickets to a show. So I took one of my friends and colleagues and she's a wheelchair user. So I'm like, let's go to this show. A lot of it wasn't accessible. So the shop, they had a store the lift had broken, there were like "oh sorry, the lift's broken." She couldn't go down there. When we were sort of waltzed through by the organiser, you know, they were very like, "Oh, you know, be careful. There's a lot of crowd" and my friend would be like, "I've traveled to Italy on my own. I'm fine." It was like, you know, really token but but they didn't implement the very things that I implemented for the show. And so, one of the things I'm really asking people to do is if they call out accessibility, inaccessibility, if they call out ableism show that on your own content, like you can't talk about inaccessibility if you're not willing to make your own content accessible, or you're going to get someone in as a token, you know.

ABBIE
Yeah, and I guess that's also you were when you were front facing it was all about showing that they were inclusive and diverse. But then when it was something that wasn't going to be literally on front and centre stage, like literally just going to be "I'm just attending this thing because I'm part of it", then it was not as important and wasn't a priority. So I guess that yeah, that's disappointing.

CARLY
Absolutely, and I mean, I'm so proud. It's probably you know, the one of the proudest things I've done in my life. But it was disappointing because we were just so overlooked by the very place that curated us. And also, it was a lot of work

ABBIE
I can imagine.

CARLY
And I had like five Melbourne Writers Festival events on in the same week, and I also work at a festival as well. And so the festivals were starting, like the next week, and I was writing my book at the same time.

ABBIE
So a bit busy, bit busy for CARLY. Speaking of accessibility for content, a lot of people asked what they can do as individuals to help the disabled community and I, obviously right now especially locked down our interactions with the wider community and disabled people is just content because of what else can we do at the moment. So what are some, if you just want to do a quick fire of things that we can do to make it more accessible,

CARLY
Accessibility takes time, remember that, like, I know that you might only be one person doing your social media, or you might have a small team, but just do it. Like I'm one person, you know. So it takes time, takes a little bit of money, but a lot of it is free. So things that you can do are putting image descriptions on your social media. So for example, an image description shows what is in the picture. If I was to describe myself right now, I am a woman with a red face, short, dark, curly hair tied back wearing a very bright floral dress with a yellow Care Bear and a sun on its tummy. And I'm, I've got a cupboard behind me. So easy, right. And then if you have a text based image description, you can copy and paste the text and put it in the caption, because that means people who are blind or have low vision can understand what's in the photo. And there's, you know, varying levels of vision loss. The other thing is caption your videos so that people who are deaf know what's happening in them. If you can't caption do a transcript, I did a reel today and it was too busy. Like I did a lot of screenshots. And it was too busy for me to include captions. So I did a transcript in the thing. And I said, I've got the transcript because of that. But then I reshared something else, Turia Pitt mentioned me on a podcast. And so I reshared that little clip, and I did the captions through a program called CC Subtitles. But there's also like, I use clip-o-matic. And you can go and edit the spelling. I accidentally left a weird word in there. So it was like she was talking about diverse bodies, but then my typo meant she was talking about diverse fruit. The other thing content warnings . So if you are talking about things like suicide, death, you know, pregnancy loss, blood, violence, all of that hard stuff, put a content warning on easy free, and you're telling people and you're giving them the opportunity to make a decision around if they want to look at it or not.

ABBIE
I noticed some people just just say, "content warning or trigger warning" and don't give the warning of what it is. And it's like, Okay, well, what... you need to say what the category of content is? Right? Sorry, that really irks me. I'm like, that's not the point.

CARLY
Be specific around it. So I am, I went to the art gallery back in January, when we could, and I saw this amazing like exhibition where there was just moving liquid on the wall. Like a, what was it called? Like, like a projection, but because it was moving, I'm like, well, then that has the power, perhaps to give someone a seizure. So I put like, "content warning, moving, you know, moving image" or whatever I said. So doing that. Yeah, I often put content warnings for you know, sensitive topics, particularly around violence, and discrimination and ableism and ablest language as well. Like if you're going to use for an example, if you're going to discuss difficult content, that includes ablest language like the R word or the M word, put that, like don't say the word, just say this contains disability slurs, and then don't use those those words. To make things accessible, you know, try not to use casual slurs like crazy or idiot or stupid but also the R word, the M words the S words.

ABBIE
I'm not sure what the M word is.

CARLY
There's two. One pertains to intellectual disability and one,

ABBIE
okay

CARLY
pertains to short staturedness

ABBIE
Oh, okay. Yeah. I think we all understand what that is.

CARLY
Don't use those words and call out when people do

ABBIE
yes,

CARLY
use those words. And don't, don't say "oh, but languages evolve." Because honestly, disability slurs are never a compliment. So why why are you using them?

ABBIE
Absolutely. One more thing, I actually, have just thought of it then just one more question before we go to your nightmare fuel. I don't know if you've got one, or prepared, but we have one prepared anyway, if you don't have anything you want to talk about, but what's the best way to ask someone what their disability is and obviously you wouldn't do this to a random person on the street. But say if you become friends with someone, I think what I found is you don't want to make the person uncomfortable. But you also want to get to know the person and know their you know, their life story and also what you can do to help. So is there a best way to ask that.

CARLY
So a couple of things so people don't need to divulge their medical condition to strangers. Firstly, and like you were saying, you know, you don't ask someone on the street, except we do get asked. I get asked all the time. What happened to you? Were you sunburnt? Were you burnt? Were you born like that? My brother's got eczema. all of that.

ABBIE
My brother's got eczema. No, some I'm not gonna lie CARLY. Someone did put in the question box, "I've eczema. So I completely relate" And I was like,

CARLY
They try to attach their own experiences to yours. Don't ask upfront. And also, if you are asking someone about access needs, so say, if you're throwing a birthday party, when you finally can, you can say, "hey, you're invited to my birthday party. Do you have any access" needs or go, "Hey, I'm having a birthday party at this pub. It has an accessible entrance, there's a lift, and there's an accessible toilet." So state that stuff when you're planning, like, keep access in mind when you're planning so people don't have to ask, if you are asking a friend, like, "Do you need any accesses needs?" Or if you're like in a job interview situation, just say, "Do you need any access? Do you have any access needs?" Because people don't need to disclose if they don't want to, but they can still ask for access needs. And I can't begin to tell you how relieved people are when you say "Do you have any access needs" because they feel seen. They're like, "wow, someone's considered my needs." It might not be disability related. It might be "Oh, I need to go and, you know, pump breast milk every two hours." Or it might mean "I have to go and pick up the kids" or it might mean "I have to leave the room when you talk about this stuff. Because it is you know,

ABBIE
Triggering Yeah,

CARLY
Those sorts of things. But if you're wanting to get to know someone, ask, "I hope you don't mind me asking, you know, what is your disability? Do you identify? How do you like to be called?" you know, like, "do you want to be called a disabled person, a person with disability?" Are you okay? What language would you like me to use? And also, maybe even if you were out when with a friend who's disabled and something happens, and you're not quite sure what to do, I don't think that doing nothing is great, like speaking up and saying, "hey, that's not okay." But also following the disabled person's lead because chances are, we are encountering this ableism every day, and we know how to deal with it. So but if we are, you know, really stressed or whatever, note that and then write a complaint letter or talk about that stuff with our permission on Facebook and say, "Hey, I encountered this today, you know, don't make us an inspo porn example. But even just alerting friends to, you know, maybe maybe even like if someone gets called an ableist slur, a disability slur. You could then say, "I've now seen firsthand how that feels. Don't do that friends." I guess also not overlooking the disability, like people will be like, "Oh, I look past it." But we don't.... A lot of us don't want that. Like, this is part of us. This is us. We can't change it. We don't want to change it. So and also following lots of people on social media who are disabled, like diversify your feed.

ABBIE
So we'll go into the Nightmare Fuel because it's called I literally could talk to you for fucking seven hours, but I'm gonna I'm gonna message you after about it actually. But okay, so we do Nightmare Fuels every week. Worst dates, fucking, sex or even just like a shit time. Like we had a comedian one time talk about when she, this was actually really cooked. She was in like a lineup. And whoever bombed on stage had to strip and she was the only woman in the lineup. So she was made to strip even though she was assured, so it's like, any just awful stories of your life. Basically, that you can go "that was fucked by other people."

CARLY
There's so many Oh, my God. So I mean, yeah, absolutely put a content morning on your podcast, because what I'm about to say is like quite bad. So I went on a date with a guy, probably in 2013, I would say, or 2012. It would have been 2013. I met my husband in 2013. So I went on this date with this guy. And I had met him because I was speaking at an event. So he knew what I did. He knew that I was a disability activist and I was a speaker and a writer. And so he and I went on this date to a pub. And we we've been I think we'd been out a couple of times before. I'm going to talk about suicide now. So if you if this triggers you please turn off for a minute or so. He said to me that if he looked like me, he would kill himself.

ABBIE
No.

CARLY
Yep. On the date. Also that he couldn't handle how public I was in talking about these issues.

ABBIE
Elise is on the floor. Elise is literally I wish you could see what she's literally she went under the desk when you were talking about that.

ABBIE
I'm SO ANGRY. Are you fucking serious?

CARLY
And then I remember speaking out to him. I sent him this very long text. I probably still have it. I think he invited me to his housewarming or something that year and I just said "no, I don't want to go."

ABBIE
Yeah, pass. Thank you though.

CARLY
I later met my husband, but it was just, it's just shit and but also like these situations like I had a woman another thing when I was speaking, I had a woman who was watching me and I guess she got some sort of familiarity with me. I was itching. Like I get very itchy. My skin is itchy. And I was itching on stage. Like it's just who I am. It's what I do, you know? And so I was having a drink with people and there was me and I know they won't mind me naming it naming them because I've talked about publicly before. I was with Celeste Liddle who's this amazing Aboriginal writer, and also Jo Stanley, who is a radio broadcaster. And so this woman came up to me while I was talking to people afterwards, and I was having a drink. And she started scratching my arm. And she's like, "Do you need a scratch? I saw that you were itching" And I said, "No thanks".

ABBIE
Sorry, I'm actually not a pet.

CARLY
And then like, I had to tell them, like I told the organiser, and she's like, "tell me who!". And then by the time that organiser spotted her she was on her way out, that was that was really weird. That familiarity was... because normally people avoid touching me because they're scared of like, catching it. It's not contagious, or getting oily or hurting me. And so I'm, you know, I get spared all the awkward, weird kisses from old men and stuff, which is great

ABBIE
beautiful.

CARLY
The other difficult thing was when I was on radio, and the host asked me what the hardest question I've ever been asked was, and I said, it was "can you have sex?" And he said, "Well, can you?"

ABBIE
Oh, are you fucking kidding me? Why do they exist?

And then he said that my face wouldn't be so great at Halloween. And so and he said, a range of other things. And I didn't know how to handle this. I like..... your face. But

ELISE
Carly I will say, I listened to that interview, you handled yourself very well, I would have exploded.

ABBIE
What did you say? What did you say

CARLY
I sort of just laughed it off and sat there. And I sat through the interview, I thought, well, maybe I could have left or maybe, I don't know, I just sat through it. But also, I was a guest. So this is on ABC. And I was a guest on ABC Melbourne for very many months regularly, like probably for about a year maybe. And then after that, they dropped me, I didn't get invited back. It's dangerous to be a woman of color. So I'm not white, a disabled women in the media, who is at the liberty of, you know, white men who make these decisions. And so I went on The Project the next night, and there was a news article, it was like national news for maybe three days or something. And it was really weird. I had lots of people support me, which is great, most mostly support. But also, I had people telling me how I should have behaved, that I should have walked out, that I should have spoken up more. And I found it really hard. I didn't really talk about it much until I released my book, like my publisher said, "Oh, you've got to put this chapter in." And so I did. There's actually... hang on, I'll grab, I've got this massive pile of books next to me, it might, they might fall down. But my book actually has a chapter I'm going to do a spoiler here so this is my book

ABBIE
Oh my god, do it.

CARLY
My book has a bit of a chapter. So it does. It does have a chapter called That Radio Interview. And I actually never mentioned the host name because I don't I don't plan to give him

ABBIE
any airtime. No,

CARLY
but I have a chapter, chapter 13 what page is that? Sorry, I haven't read my book for a while.

ABBIE
I wouldn't imagine that you did just sit at home and go "wow. Isn't this an achievement just every night before you go to bed making your husband read it to you after he buys you Gorman

CARLY
He has not read the whole book yet! And the other day, I I don't know whether you saw that I had to write a piece for the ABC. So I still do work with the ABC and things are prepared but um, I wrote about him doing the census without me. Because he did the census without me. So I wrote about the division of labour

ABBIE
I saw I saw you post about that. Oh Yeah, maybe I read the article I did think that was interesting. Yeah

CARLY
So uh anyway, but but I did mention him there it got a bit of a dig. I tried to make it humorous and I had a bit of a dig. He still hasn't read my book. But I said something like "well, he should know these things about me because he has read most of my book." So the chapter about, chapter 13 I'll read it to you. Very short. "Chapter 13 So Can You Have Sex? To everyone who has felt it is their right to question me about my sex life? None of your fucking business."

ABBIE
Wait that's it?!! It is none of their fucking business Why the fuck are you sick fucks you fuckin fucks.

CARLY
So many disabled people get asked like I've had on internet dating sites.Because it was way before the apps I didn't use Tinder. But you know, those sorts of things. People ask me like men up front. I mean out sometimes when I've been on dates, or, or just like in on the radio, I never expected that. But I just sort of laughed and I kind of remember I might have said I am I'm married or something. But it's just it's just really weird. And people think that disabled people give up our body autonomy.

ABBIE
Yes.

CARLY
To answer their questions like, I mean, it's not only that, it's like, what's your lifespan?

ABBIE
What the fuck?

CARLY
But also like, will you pass it on to your to your children. I remember writing something like I feel I've got a very mostly very good social media following. I feel quite safe to say stuff in public knowing that maybe it'll make the media or whatever. But, you know, it's relatively good. And I can't remember what I was saying on Twitter. But then I had someone jumping in and say, "Oh, I just googled it. And I know that there'd be a 50% chance of you passing on ichthyosis to your children." Like, I'm not some kind of curiosity.

ABBIE
You're not some yeah, you're not some experiment or like some like, it's bizarre.

CARLY
There's so many types of ichthyosis and my type's quite rare. And it would mean that I probably wouldn't pass it on. But anyway, Hey, tell me what you think. And tell me your Genesis ways of thinking by googling this.

ABBIE
I'm so glad that they got their medical degree and decided to let you know your chances of passing it on to children

CARLY
When I tell them when I tell them like I'm not a curiosity. They're like, "Oh, no. Well, I'm a biologist. I'm really interested" I'm like "I don't fucking care."

ABBIE
That makes it worse. Doesn't that make it worse? If you're like, "No, I'm actually you actually are a curiosity to me." That's what they've said just then.

CARLY
Yeah, I mean, some of the stuff is really funny. I think the funniest thing I've ever been asked on like, was on the train, I often get like, weird things.

ABBIE
The train seems to be a place for you, CARLY. There's something off centre- there.

CARLY
And I had this man, look, he might have been taking substances I don't know. And he said, "Hi, excuse me. Have you been licking lollies?" What do you mean? I think he thought that I was licking a lollipop. And then it slipped. And I was just like,

ABBIE
oh my god, um, you're just like, I have no idea what you're talking about.

CARLY
Funniest thing and also, like, Adam and I were out one day for lunch. He's pretty... He's pretty good at answering like back sometimes. And this guy comes up to me and he gives me this card. And he says, Oh, hi. I used to have ichthyosis. And I went to, like, I went to a doctor in France. And here's their card. And Adam goes, "bet you didn't." And I'm just like

ABBIE
Bet you didn't!!!

CARLY
Okay, so another thing. Sorry, my, your whole thing it might need to be two episodes, because I've got so many things.


ABBIE
No, this is fucking amazing. I just don't want to hold you up because of your writing time. I could be here all day.

CARLY
I mean, the deadlines on Friday, I can write it at 10 o'clock. I was in a restaurant. So my mom is South African. So I in fact I am. You know, I am of African heritage. I'm mixed race. And I had this woman come up to me, Adam and I go to this amazing Ethiopian restaurant a lot. And that's where we had one of our successful dates. And we've had a lot of other dates there since then. Anyway, so a few years ago now and I was sitting sometimes I position myself so I don't get stares, you know, I, I faced the wall or I'm not facing outwards, because it's like a self preservation thing I don't want to be looked at and having to, you know, so I was sitting towards the wall and so, this woman comes out of the toilet. And there's all these African artworks on the wall, as there should be some of which like my parents have at their house. You know, my mum's got a lot of South African artworks on the wall. And she says to me, "excuse me, are you in traditional African makeup?" And what she says? She says, Oh, well, I'm just looking at the art and your face." I want what I've got traditional African genes, but I'm not

ABBIE
I've got the genes. Yeah.

CARLY
But I'm not blacking up to look like an artwork. And Adam's just sitting there going like ugh. That was just really weird. So like, all of these things I write about or think about, but can I tell you something that I that happened? That wasn't to me, that was very funny.

ABBIE
Yes, of course you can. I'm just sitting here in shock.

CARLY
When we went on our honeymoon to we went to England, Italy and France. So you know, lots of people gave us lovely gifts through money. And so one of the things that we did was went to Heston Blumenthal's restaurant, which he's that very famous chef that does all those weird food concoctions, molecular gastronomy. And so we went to this restaurant it's very, very expensive. And it's in like a very nice hotel. And it was, you know, English weather or daylight. It stays forever. You know, here it gets dark at like eight but then it gets dark at 10 or whatever. So anyway, we're sitting down and it was on a Sunday, and the blinds were up, and there's all this construction work going on. It wasn't affecting us. Anyway the guy behind us was from the from America, um, and he asked the waitstaff to pull down the blinds because he couldn't handle the view like "oh turned down. I can't look at that construction. It's so ugly," and it's complaining. He was complaining to the waitstaff that the toilet was too far away, that his fish was too fishy. And she goes, she goes "Oh, why? Why did you come here tonight, sir," and he goes, "I've got a lot of money, and I wanted to spend it"

ABBIE
so you want to just be have a little power trip, you fucking dickheads I can't. Oh my god. This fucking

CARLY
Adam could see him because I was sitting with my back to him and Adam was saying his wife was just like, "oh my god, get me out of here."

ABBIE
Can you imagine being married to someone like that and like... working I used to work in hospitality for years and there are so many people like that that are just rude, complete dickheads. And that's what the best test of what someone is like is how they treat waitstaff and crew and you know, like, you can always tell someone's a dickhead, if I treat people that are helping them out.

CARLY
from another point of view is if you are doing your job as a wait staff or like customer service or whatever, in a shop, you do not know if you have to know a disability diagnosis like the amount of times I get from people. Oh, what happened to you? And I'm like, you're literally doing your job. It's not going to make your job easier knowing this.

ABBIE
But what happened to you? I just it just

ELISE
You should ask it back.


CARLY
Oh, I wanna say something really funny? Like I fell in a vat of paint?

ABBIE
Yes. Do Yeah. Be like I watch too much. Puberty blues or at the vaso or something

ELISE
Have you seen Suicide Squad? What happens to Margot Robbie? And that's based off my life. It's a biography.

ABBIE
No idea babe

ELISE
The Joker pushes her, like he could be like, actually lot of Marvel comic books are based off my origin story.

ABBIE
I think you should literally do what Elise said and say "what happened to you?" That's fucking

CARLY
Sometimes I put it back on them. I say, you know, "that's really rude." I was in a shop in America. Just before I went to the theatre, and I was getting I was getting a drink. And like Americans cannot understand Australian accents honestly, it's like,

ABBIE
Americans are just anyway, they're fine, I guess.

CARLY
And I had this woman like, as I was handing money to the cashier. This other woman was like, "Oh my god, like what? What's wrong with your face?" And I said, "that's very rude, isn't it?" And she couldn't like understand compute what I was saying and then and then she's like, "Oh, no, I'm just asking and you should be grateful that someone's speaking to you looking like that." Cause it took her ages to realise what I was saying because of my accent and her, you know, ignorance. Oh,

ABBIE
Carly I just... Also, I love it. Like if like, you've got the courage to speak up for yourself, obviously. And they've gone "What?" And you're like," Okay," like, you know what I mean, it's like for fuck's sake, like, how frustrating.

CARLY
Sometimes it's not easy, and sometimes they do break down but most of the time I'll put it back on them or call them out. But also if you're a parent, and your child says "Hey, what's wrong with you?" Like teach your child to say "I hope you don't mind me asking? You know what happened" but don't also make something up like I get a lot of "Oh, she's been silly in the sun." That didn't happen

ABBIE
I've been frolicking in the sun Like I can see I can see the frolicking it's worse, you're wearing a colorful top she frolics too much

CARLY
I cover up so much like I've had people tell me off like for the going in the sun just when I'm inside covered up like you know it's very rare that I've got any skin showing so yeah.

ABBIE
Oh my god that well the nightmare fuel section I think everyone's got enough nightmare. Oh, god it's fucking incredible and people forget that as well because you're such an a vocal activist that you're also a real person experiencing this everyday obviously where it comes from, but I think as well like you were saying you do break down because it is fucking hideous. The things people say and tiring. And I'm so grateful that you have the platform that you've curated the platform that you do, and I'm so glad we had you on the podcast. It's been such a pleasure I could talk to you for hours, but I feel like it's gonna be you know, I don't want to hold up the writing CARLY. I'm stressed about the writing for you. But thank you so much.

CARLY
Hey, let's catch up for a drink when we can.

ABBIE
Yes, absolutely. I learned a lot as well. During that conversation as well so thank you so much for taking your time and emotional label to educate me. Emotional label is what I just said labour. educate me, Elise and everyone listening and really appreciate you.

CARLY
It was so fun!

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