I really enjoyed this chat with Carly. I hope you do too!
If you don't know who Carly is, she is a writer, speaker, disability advocate and arts worker. She has also been awarded The Order of Australia Medal.
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The website: www.icantstandpodcast.com
You can follow Peta on Instagram @petahooke
Peta [00:00:02] Hello and welcome to The I Can't Stand Podcast, the podcast answering your questions on what life is like when you have a disability. My name is Peta and every week I'm your host. I had cerebral palsy and I love to answer your questions. Increasing understanding of what it's like to live with a disability is what I'm all about. This week, I have such an amazing interview for you. It's with Carly Finley, and if you don't know who Carly Finley is, where have you been? She is one of the biggest disability advocates we have here in Australia. I so enjoyed this chat with Carly, and I really hope do too. Without any further ado, let's get into it.
Carly [00:01:03] Hi, I'm Carly Findley.
Peta [00:01:05] For people who don't know you're a disability advocate, award-winning writer, and you also have the Order of Australia medal. Is that right?
Carly [00:01:14] I do. I do have the Order of Australia medal I've only worn it once. Yeah, I am a writer and speaker as well, and I'm also an arts worker. I work part-time at Melbourne Fringe as the access advisor, talking to artists about making the shows accessible and helping the wider industry do so. Yeah.
Peta [00:01:36] Very cool, so how did you become a disability advocate, Carly?
Carly [00:01:40] It just happened through doing, I guess, like it was a very long time until I identified as disabled, even though I've had a skin condition called Ichthyosis, even though I've had that all my life when I grew up in the 80s and 90s, I just saw disabilities very narrow. Very what we saw on TV was sort of what I thought disability was. So I saw Paralympians and I saw really awful stories about disabled people on a current affair. And that was my extensive media representation, unfortunately, and it wasn't until I was about twenty-five twenty-six. I went to my dermatologist and I said, how can I work with young people around body image and confidence and advocacy? And he put me in touch with the chronic illness peaceable programme at the Children's Hospital that really showed me how why we have different diagnoses. We have very similar experiences, so had lots of time off school, lots of time off work and also the barriers that we encounter. You know, the discrimination levels were very similar content to that. I was blogging. I had been blogging for a long time, but I started blogging properly when I was doing a master of communication, and I started writing about the crisis. And then I started running more about chronic illness and disability. And the more I think, the more you write, the more you research and the more you learn about yourself and about others. And so that really taught me a lot. That led to writing just the big government and that led to writing for the ABC. Mamma Mia and then speaking and that is what led to this. Yeah.
Peta [00:03:33] And I have to say, through researching for this interview, we have a lot in common. We not only are we there in the non-curable club. We also are both only children.
Carly [00:03:46] Yes.
Peta [00:03:47] And I also didn't identify as having a disability, even though I'm sitting here in a wheelchair with cerebral palsy that I've had from birth. Because, like you, only in my childhood, really disability was presented to me as a negative thing. So I didn't want to be disabled, and I even to this day really struggled with my identity because it's reconfirmed to me the negative connotations with having a disability constantly, including the low expectations. And that was definitely confirmed to me even this week with the SBS documentary that said, what does Australia think about disability? And to be honest, it was really, really hard to watch, you know, and that's
Peta [00:04:34] where I think what you do is really important because we both highlight that you can be happy to have a disability. And the hard things that we encounter in having a disability isn't anything to really do without disabilities. It's society and their attitudes towards us.
Carly [00:04:55] Absolutely, I mean, I don't I think, you know, documentaries like that, I haven't, I haven't watched it, it's on my list. Documentaries like that are very important to highlight the idealism, but also does it then perpetuate the stuff that we were saying when we were younger? You know, I don't think that we should only be fed inspiration porn, which is the objectification of disabled people for non-disabled people. But I also feel like there needs to be some joyous stories. It doesn't always need to be that reinforcement of negative stereotypes to prove discrimination. And I do wonder just how far we've come when we're constantly needing to trade in our trauma.
Peta [00:05:41] Yeah. I mean, there were definitely some positives to the documentary, and I'm really happy that we're still our voices are being heard on mainstream media because, as you know, that's quite important to a lot of us with media representation. You're known for your amazing fashion sense.
Carly [00:06:00] Thank you.
Peta [00:06:02] Why do you wear the items that you do?
Carly [00:06:05] When I was younger, I would say until I was about 30, maybe so nearly 10 years ago, I never really wanted to stand out more than I already did. And so I reckon it would have been probably around the time I got married, which is in twenty sixteen. I wore I. I got two white dresses, actually, but I had this really great jacket, a really great floral jacket that I wore. So I had three jackets and two dresses. I wore that jacket over my dress during the photography and then at the dinner, and then I got changed into another dress, which had some sequins on it. And the other thing that happened was in twenty sixteen. I took leave without pay for my government job, so I had at the government. We had to dress somewhat more conservatively and I just started working more for myself and I could just wear what I wanted, you know? But I also like the presence of Instagram, especially that I'm passionate about because it shows friends that I wear their clothes. So many people will say it's because of me. They've decided to wear something or buy something or be more colourful in their choices or voting their choices. I'm not. I'm not pushing capitalism in an evil way or anything. I'm not demanding people buy stuff, but it is nice to know that people are being more daring with their clothes because they've seen what I'm wearing.
[00:07:46] Also, I really like supporting small businesses. So this talk, for example, is by, it has gold faces on it, by a woman. And she has a brand called Rattamatattbuying from a small label. Give in to that, you know, one person and or a few people at work in the company and supporting small business. And that's been really nice. Yeah.
Peta [00:08:12] Absolutely And I, for me, fashion is a form of self-expression. Yeah. So you will never see me or hardly ever see me in black. It's just not me. And for me, I think it was a technique or a mechanism for people to see me before they see my wheelchair.
Carly [00:08:28] Absolutely.
Peta [00:08:28] And I really do love when people come up and comment on my outfit or my handbag, rather than commenting on my disability or asking me why I can't walk. So I guess it's funny how fashion can be so important for so many different reasons. What do you love about having a disability?
Carly [00:08:50] I really like the community. I think that the disability community is really strong and really supportive, mostly. And I'm not saying that everyone has to do this, but I feel like, you know, having a disability, you're more likely maybe to talk about injustices around disability and other human rights issues. Personally, my disability means that my skin renews itself like twenty-five, twenty-eight times faster than everyone else's. So I look very young.
Peta [00:09:28] You do.
Carly [00:09:30] I got invited to this school, reunion and school is awful, and I was in this group chat and it was just like being back at school every time I'd say something. I'd get just no response crickets and then someone else would jump in and change the subject. And I got a photo of me at school. So then 20 years ago and a photo of me then as well and put it in a photo collage. So one photo was next to the other. And I said, Hey, I've just come across this photo from high school and I haven't aged a bit. I'd love to see how you've aged.
Peta [00:10:11] Even if people don't view our disabilities as a positive, the way we can empower ourselves by viewing it as a positive, I think is really important. Growing up, Disabled in Australia beautifully illustrates the diversity of the disability community. What was the motivation for you collaborating in this book?
Carly [00:10:31] Yes. Growing up disabled in Australia is an anthology. It's got forty-six writers in it and me. My aim for the book was to bring writers that we haven't heard of before and writers that we have heard of before, but really show the diversity of disability. So in the book, there are lots of different types of disabilities, but also like a real intersectionality of who is in the book. So there are people from the trans community, people, Aboriginal people, people who are migrants, people whose English isn't the first language, deaf people, intellectually disabled people. It was really important to me to have a real big cross-section of people, and we actually have more women and non-binary people than we do men, and we have a really diverse range of different voices and also have different types of ways that they could tell this story. So there are people who have written poems and people who have drawn illustrations. We've got interviews as well, people who I've interviewed and who were interviewed.
Peta [00:11:37] I was first introduced to you through your first book, Say Hello. And it so resonated with me, which I'm sure is no surprise to you because like you, I get asked questions a lot. But it's part of my job now, and I actually don't mind being asked questions. But what I do relate to is the emotional labour that we all go through, having to answer the same question over and over again, which is why the podcast was born, because I thought there's got to be a
more efficient way to do this. Is there a question, though, that you wish that you were asked more often?
Carly [00:12:11] The title of the book Say Hello, it was called is called that because it's an invitation for people to say hello, rather than launching into inappropriate questions when I go into a store, for example, or a restaurant or whatever. I notice that I'm treated very differently to the person, the customer in front of me or behind me. They're often not asked why they look the way they do, then often not ignored. They're often not looked at in horror. And so it was really an invitation for that. So the question I would like to be asked is more like, how are you? Or, you know, rather than the launching into what's wrong with you or why? Why are you so sunburnt or why? Why do you look like that? Quite like it when people ask if you're OK to talk about this, like if you don't mind me asking, you know, why is your face red? Or if you don't mind me asking my child wants to know this or whatever, I think that that preface is quite good.
Peta [00:13:14] Employment and education are two areas that I believe define a person's future. Why do you think particularly around employment, there is still such a lack of opportunities and so many attitudinal barriers towards disabled people?
Carly [00:13:30] I think that people have such a low expectation of disabled people, but I also think that workplaces aren't set up for true flexibility. Perhaps they are better now through the pandemic where we can work from home. But you know, a lot of jobs ask you to work full time or to have a driver's licence. Some disabled people can't manage that. Also, there's a lack of accessibility provisions, like the cost of accessibility permissions. Firstly, I know that there's job access, but they only provide up to $6000 a year to get supported and you also have to work more than 13 weeks a year. I see this a lot with artists who might. I have a contract with a venue or an arts organisation for 12 weeks where they're rehearsing and creating this thing and then performing. And so they're not eligible for job access. But then also like when you get into an organisation, I feel like there's either the need to disclose or the fact that you and I can't help but disclose. And so that's really hard as well. Like, I don't think either way's got it easy. I feel like sometimes when I see people sort of defends having invisible disabilities harder than having a visible one. I just don't think that is that there should be a competition or comparison because we all are different, you and I can't help but disclose when we.
Peta [00:14:59] And you know what? Neither of us knows what it's like for the other person.
Carly [00:15:02] Exactly. But I also think that there are elements of a visible disability that are invisible as well. Like there are lots of things that you can't see about my condition and probably similar with those. So it can be very, very hard to raise accessibility without talking about the condition. By law, you don't have to disclose your disability to ask for accessibility. Except then when you apply for a job access, you know you might need letters from your doctor and all of that. And that becomes like the medical model of disability, which is just so they stop. But I also think that I would love to see more disabled people in leadership positions. Where are these people? Why? Why isn't there more disabled people in parliament? Why isn't there more disabled people, you know, leading in the media and just so many aspects of so many sectors that just are lacking with disabled people? But then there are really great, you know, I work as I said, I worked part-time at Melbourne Fringe. I really, really enjoy it there. I feel very valued. I feel like I can rise things and that I really, absolutely no the heavy lifting that way as much and once people do. One of the things that I really like about where I work is that we have questions, specific questions on the interview, in the interview process and also before the interview process about access. Some people have said that they've never been asked this before. You know.
Peta [00:16:25] That's great.
Carly [00:16:27] Just by welcoming people through like that. One of the things I didn't know when I started until I started it at Fringe was I filled out this Fair Work Australia form. But there was a statement on the form that said If you are like a mother of a child or parent of a child under two if you are disabled or chronically ill, there were all these things that you could use as a reason to go part-time. And I never knew this because when I was working for the government, I asked if I could go part-time like way back. Probably when I was like twenty-four, twenty-five, I was really having a struggle with part-time and full-time work and not really enjoying the work. But also my skin just got so sore and I remember asking if I could go four days a week or. And they said no. So this statement was on this only fair work form. And I'm like, Oh my God, I never knew this. Like, seriously, if I had known, then I probably could have used that. I mean, I think it's up to the employer's discretion, but still like and it did only come in in 2009. I believe so. I said before that. But still, like I just there was so many times that I thought it would make my life so much easier if I did not work five days a week and I didn't know that I could, you know, ask.
Peta [00:17:46] And that often just illustrates how we have to, you know, a lot of the time when we face challenges, we face them alone.
Carly [00:17:54] Yes
Peta [00:17:54] Because there's nobody else, you know, in where we work having a disability that understands to be able to go to you to say, Hey, how do I get down to four days a week?
Carly [00:18:06] Exactly, exactly. And I think one of the things that I've been doing is really being mindful when we get, you know, when we get a disabled person at work or an artist, I'm really keen on just saying, Hey, how's it going? Do you need any help? You want to talk this through or whatever, because that's really important to show someone else that they're not alone, that they're, you know, I mean, they might not strongly identify as being disabled, as I do, but just for them to not to feel alone and to feel supported and that they can ask questions. That's really important to me. Yeah.
Peta [00:18:39] So my last question. What do you hope for someone with a disability? What do you think it would be like for them in the future? If you could wave a wand and it could be, you know, in the next 10 years, what do you hope for us and other people?
Carly [00:18:55] Well, I do hope we're not in the middle of a global pandemic.
Peta [00:18:57] Yes me too.
Carly [00:19:00] I think that there's going to be a surge in people like adults identifying as disabled because I'm seeing such a strong identity amongst young people, children, teenagers, young adults, and I'm just finding that amazing. And not only like with a disability, but a whole range of intersectional identities like specifically LGBTI people in First Nations, people just seeing so much strength in that. And I feel like that will happen with disabled people as well. You know, I do work with YDAS, which is the youth disability advocacy service. And to see those young people just in their identity and want to become better advocates and want to know how to talk about disability and their own disability and others is really great. So I think that would be great. I really hope that when we are seeing disability in the media, it's not limited to like a five minute chat about someone promoting their book on set. I'm grateful for doing that on air, but if that's the only time I'm going to be invited on TV, I want to chat about more things. I want to do most stuff and I don't only want to talk about disability either. You know, I got asked to do a really great panel at Ubud writers festival in Bali, and it was about fashion and activism and was so fun doing that. Of course, we mentioned disability, but I didn't have to talk about, a lot of disability stuff and it was great. But I also feel like there will be way more support for people. We're seeing lots of grassroots movements. The Disability Justice Network is amazing. You know, it's being set up by Vinamilk Hermans, who's a young First Nations woman and just incredible work supporting people from the grassroots level. So that's really great. And I think that we were just seeing much more media around like self-made media that leads to mainstream media. And I think that's really, really, really great. But I think it is changing slowly, and now we've got like, finally, the amazing one plus one series on the ABC not only talking about disability but that incidental stuff of just being, you know, just being present, that's really important. That's what I want to see.
Peta [00:21:23] Well, thank you so much, Carly, I thoroughly enjoyed this chat, I hope you did, too. You've certainly brightened my day in lockdown. Thank you so much for being here.
Carly [00:21:32] It's really lovely to talk to you.
Peta [00:21:37] Thank you for listening to this week's podcast. I hope you enjoyed it. If you did, can I encourage you to leave a rating and review? If you listen on Apple podcasts or share the podcast on social media or with a friend? Until next week. Have a good one. Everyone by.