Lisa Cox On Disability Pride Across The World

Image Description:

Background: A white background with the words “LISTEN NOW” written in gold

Foreground: A dark green box with a photo of Lisa - a white woman with long, blonde hair wearing a teal shirt and blue jeans in a wheelchair, sitting in front of the ocean. Below is the white text “#61 Lisa Cox - Disability Pride Across The World.” Below the text is a white line, the rewind, pause, and fast forward symbols.

00:00:00:06 Jillian Curwin: Hi everyone. Welcome to Always Looking Up, the podcast for no one is overlooked and height is only a number, never a limit. Hosted by me Jillian Curwin. Each week I'll be having a conversation about what it is like to live in a world that is not necessarily designed for you.

In this week's episode, I sat down with Lisa Cox. Lisa is a multi-awarded writer, presenter and consultant based in Australia. She has written for numerous media outlets, including HuffPost, The Sydney Morning Herald and Sky News Australia. We discuss the guilt we sometimes feel with being disabled, the fact that there is more than one right way to be a disability rights advocate and what disability pride means in the US and Australia.

Let's get into it. Hi, Lisa.

00:00:46:20 Lisa Cox: Hey, Jillian, thanks so much for having me on the show.

00:00:50:07 Jillian Curwin: Thank you so much for coming on. I'm so excited to talk with you.

00:00:54:05 Lisa Cox: Likewise.

00:00:57:02 Jillian Curwin: So to start, why don't you tell my listeners a little bit about yourself?

00:01:01:19 Lisa Cox: Sure. Well, I'm coming to you from Australia, and we're in winter at the moment, so it's freezing over here, but Australian freezing, so it's not too bad. But I'm a writer, my background's in media, and I'm a disability advocate as well. So, hopefully my dog doesn't make an appearance on the podcast, but I'm really excited to be here today and talk to you about what I'm doing. And yeah, really good to be here.

00:01:32:15 Jillian Curwin: Awesome. Dogs are welcome, so if the dog makes an appearance, I will greatly appreciate that. The first question I really want to ask you, is what I ask all my guests, is how do you define being disabled?

00:01:48:19 Lisa Cox: Well, I acquired my disabilities when I was 24, and I've had them now for almost 17 years. And I suppose originally I had a very medicalized version of disability and these days disability is is just life and it's… I suppose I, I don't, I don't really think about it. It's just, it's just part of me. It's just, just day to day.

But having said that, every, every week, every month I have to fill out or someone has to help me fill out lots and lots of paperwork and forms and those sorts of things. And it has to be documented about labels and diagnosis and that sort of thing. So it's sort of this on one hand, I have to have disability for me, has to be labels and diagnoses and all those sorts of things. But on the other hand, disability for me is just it's just my life. I don't, it's, it's I don't want to say it's nothing. It's, it's, it's not a label or a diagnoses, but it's, it's no big deal. And I don't want to minimize what disability is for some people, but for me personally, it's kinda no big deal these days. It's just I get on with life. My husband and I just get on with life.

00:03:19:01 Jillian Curwin: I love that. And may I ask how you acquired a disability?

00:03:22:20 Lisa Cox: Yes, sure. I was 24. I was at the airport one morning and I had a brain hemorrhage. And I didn't I didn't realize it at the time. But Streptococcus A was an infection that was in my, in my system. I didn't realize and cause, caused the brain hemorrhage. So, I collapsed at the airport, spent three weeks in a coma, two months on life support, and over a year in hospital after that and during that first year, my left leg, right toes and nine of my fingertips were amputated. I had heart surgery twice, total hip replacement and, what happened then… that's right. And since then, I've been back to hospital for, you know, more, more surgery and things like that. But as far as you can say, they lost two disabilities. I'm a full time wheelchair user now, but the disabilities you can't see are my permanent brain injury and all of the invisible disabilities.

So I have things like chronic fatigue, chronic pain, epilepsy. I'm over 25% blind. My memory is shocking, which is why, throughout this interview, I'm going to have to keep stopping and trying to remember things. But all sorts of, all sorts of fun things which are part of my, of my I suppose invisible disability. My speech has been a little bit affected as well, but that all all happened many, many years ago.

But I'm still still doing doing what I do now. I had to relearn all all of the basics again- sitting up, sitting up in bed, feeding myself, dressing myself, all of those sorts of things. But now I live independently and am working again and doing things like that. Like, like some people who've been through or have acquired a disability…I don't want to say it's, you know, the same for everyone, but it's all, all very different. But when I was in in the coma, I suppose the, the specialist said, and it's their words, not mine, because they're horrible words, but they said to my family, “We don't know what she's going to be like when she comes out. She could be a vegetable.” So the fact that I'm here today and I'm speaking with you, I'm pretty bloody excited about that and the fact that I can advocate for the disability community in in the ways that I can and communicate in ways that I can. It's something I'm I'm pretty bloody excited about and very, very grateful for. So that's that's why I love doing the work that I do.

00:06:35:24 Jillian Curwin: Wow. That's that's amazing. I have so many questions. I guess the first then, I want to ask is based off your story is like, what was that process like? Because I was born with my disability, I never knew life as a non-disabled person. So what was that like for you? That kind of re-learning how to live, but then also like kind of learning how to live with a disability at the same time?

00:07:02:22 Lisa Cox: Sure. Um, it was, it was one of two things. On one hand, I was heart just miserable and terribly depressed. I don't want to sugarcoat and say It was great, but I was really, really, really depressed. But on the other hand, I was just so bloody grateful because I knew that I wasn't supposed to be alive. I'd died twice in hospital, all of my…all of my organs had shut down. I was on life support for two months. My parents had been told quickly come fly into state. We don't know if she'll be alive in the morning. Some, some really horrible stuff had gone down. So I, I quite literally wasn't wasn't supposed to be alive and the fact that I was was was nothing short of a miracle.

I'm not religious, but so all of all of those sorts of things, I was sort of on one half on on one side of the coin. I was I was really, really grateful. But on the other side of the coin, I was really depressed. So, and one of the reasons I was really, really depressed was that even though I had known and had had disability in my life growing up, that I'd been to school with, with children with disabilities, and that'd been in my life for years and years.

I'd also had in my life a ton of stereotypes through the media, things like that. Disability generally it was, was pretty shit because people in wheelchairs, your life was over. You never got married. You never you never worked again. All the all the stereotypes that we see and not so much now, but we still see in the media sometimes.

And I was told your leg's going to be amputated and I just cried my eyes out, woke up in the morning. Didn't remember because of my brain injury. Didn't remember a thing. So my family decided, okay, we're not going to make this like Groundhog Day and tell her every day, upset her and make her forget. And so they waited a few months and my brain was was getting better. And they told me and I did wake up and remember, And so that it was a slow process of my body quite literally healing and things like that. And I was very, very heavily medicated on sort of, all my, my limbs were literally washing off my feet and my hands were gangrenous. And so I was on a heavy painkillers and all sorts of things. I can't say I was in there in the best of health, so all of all of that was playing into it as well. And yes, so in terms of in terms of in terms of my mental state, it was it was sort of all over the shot, but my beautiful family were there the entire time and they they sort of kept me kept put together I suppose. Um I I do have I do have them to thank but at the same time I was asleep for two months in a coma and on life support, but I do not remember a thing because I have amnesia and, unfortunately,they remember every single minute and I feel guilty every day that they had to remember all of that and I was just off in la la land, not remembering any of it, but the the poor things, they remember all of it. So that's that time but rather than, rather than focus on it I'm doing data, right stuff now that I can talk about in the disability in the disability space.

00:11:12:24 Jillian Curwin: No, we're going to get there. But I want to hear this is your story. I want to hear it.

00:11:16:20 Lisa Cox: Okay, sure.

00:11:17:11 Jillian Curwin: You touched on something that I had never thought of, but I've definitely experienced is that that guilt.

00:11:28:14 Lisa Cox: Ahh okay.

00:11:30:10 Jillian Curwin: It's like the guilt of them, you know, in your case that they're watching and they're seeing what's happening to you and you're just you know, you said you were sleeping.

00:11:39:04 Lisa Cox: Yeah.

00:11:39:09 Jillian Curwin: And for me, it's like the guilt of me wanting, like my parents who were very supportive… My family is very supportive, but like guilt that they were just never going to understand fully. No matter how I try to explain it to them, there was just always a part of my life that they're never going to fully understand. And like, and as a parent, you know, they want to be able to come in and, you know, solve your problems and make everything okay. And there's just a part of it that is completely out of their control that they can't change and they can make it better. I think it's something that like I never… that it's not necessarily talked about that, the guilt that we feel sometimes of, you know, and also like not wanting to and I know this of not wanting, like even though like we're not a burden but still kind of feeling like we are at times and not wanting to feel like that.

00:12:35:20 Lisa Cox: Yeah, that's, that's true. I knew that part of my, like, I knew I was in a safe space and free to fall in a heap and I absolutely did. Don't get it wrong. I fell in a heap. But part of holding it together and being strong was for them as well as for me. I, yeah, I knew that I had to sort of pull my socks up so to speak or whatever, whatever saying you want to use I, I knew that I had to pull myself out of that dark place and I did that for myself as well as for them because I, I saw I saw them struggling and I wanted to do it for myself as much as for them because I didn't I didn't want them to, to feel to feel terrible. And I certainly didn't want to be to be in that dark place because that is a horrible place to be. And I knew that no one was going to to pull me out of there except for myself. And that's I that's sounds like a shitty saying on a bumper sticker on a affirmation. But it's true. And part of, part of that I… my background pre-disability, I played a lot of competitive sport and a lot of learnings came from those those times in sport where you'd be having a really, really bad time and there was going to be no, you know, hand of God, this is why I'm not religious no, no, no intervention of any sort. You were the only one that was going through that exact situation. It was it was up to you, so to speak. And so I took some of those learnings from things like sports and other situations in my life and took them to the hospital bed because I drew on those sorts of situations and that those sorts of things helped in those, in those sorts of times I knew that cups of green tea and yoga and God and all that shit wasn't going to help me.

It was, it was these other, these other things that, that, that I had drawn on in the past, like my own, my own mental strength and, and science and, and those sorts of things.

00:15:32:15 Jillian Curwin: Wow. That's I'm just like, just wow. I'm speechless for a second. So then like coming out of the hospital and everything, like, how did you learn to adapt? Like what did how accessible did you find things now that you're living in this new body, or how inaccessible that might be, the better question. How inaccessible?

00:15:55:06 Lisa Cox: Oh well pretty, pretty bullshit. That's some of it, it's, it's. So my husband and I now live in, in an area we, we chose to live in, in a place every where we travel or live or where, where I work. I work from home now. But every everywhere we go, we make a joke that pre-COVID when we could travel the world and travel we would travel to destinations where the Paralympics had been because we're like at least we know there's good access because the Paralympics had been there. But um, I know when I was lying in hospital I was watching really shitty TV ads because my background was in advertising.

I worked in advertising agencies for years writing ads and creating media. I was creating advertising, working in media, and I just watched TV ads over and over and over again on TV just thinking, “Fuck this, this is just bullshit.” This person has, there's no disability which which I already knew when I was in advertising. But just think you've got a lot of time to think in hospital, the right ways to know to do things better. But I thought instead of just, you know, I can be part of the change. Yeah, I still my brain was injured, not missing. So I could be I could be part of the change or be part of the solution. So use my professional background with my new lived experience of disability.

So that's as far as what what I'm doing now is all these years worth of experience that I've got in advertising and media and all those sorts of things fusing them with, with my lived experience helping all of these friends and businesses who are going we want to be inclusive and diverse and make things more accessible, but we have no fucking idea how do we do this? And there are some well-intended, able-bodied people out there going we'll help, but we're like you don't have a disability. You have...

00:18:29:05 Jillian Curwin: Right.

00:18:29:20 Lisa Cox: We know you mean well, but you, you just don't get it. But you mean well, so yay, but it's kinda not the same thing. And on the other side of the coin, there are some really well-intended people with disabilities who are like, yes, you really you really mean well and you really want to help, but you've never worked in media and advertising and you're saying all the right things, but you don't understand how it works from from the industry side of things.

So that's that's really awesome what you're saying. You're right on point, but that's not going to work from an industry point of view because of these reasons. So we need to find a center point what the two can do to sort of work together. So that's that's essentially what I'm doing now is, is fusing, is fusing those two, those two together and making them work, more cohesively, I suppose, because both, neither's right or wrong but they just needed a bit of a bit of fine tuning if that makes sense.

00:19:39:12 Jillian Curwin: Right. So, coming from the disabled persons perspective, who is using her platforms to try to to be an advocate to hopefully create change, what would the industry tell me that I'm doing wrong? What wouldn't be working?

00:20:01:08 Lisa Cox: The industry, so for example, we wrote a, when I say we, a bunch of a bunch of working journalists collaborated with lots of people in Peak Bodies from the three year projects. Peak Bodies, which is speaking on behalf of thousands, hundreds and thousands of people with disabilities for, for media, so media, media and journalists don't go out of their way to be assholes. And I've I've been the subject of news, news stories, for example, and they'll call me wheelchair bound and I'm like, “No, I'm not wheelchair bound.” I love my wheelchair. It gets me around the world It's… I love, it's great. It's this source of independence and freedom. Instead of saying, “don't say this, don't say this, don't do this,” journalists need some solutions that're like, “kay I know I don't say this, but what do I say instead?”

And they also are on like a five minute deadline. So we can't just say, don't say this, read my book or go to this hundred page weblink and read all these things. They need, they need fast solutions on a deadline.

So over three years we collaborated with Peak Bodies and organizations and people in industries with disabilities and put together a guidebook which is free to download for journalists and media professionals who want a better idea of language to use for people with disabilities. So instead of just saying, “Don't say this, don't say this, don't say this,” it's here are some solutions instead. And not just don't say it. It's around why, why it's a bad idea to say it, because it's something I try to do on my platform as well. Having, as far as, one of the things I can do on my platform or one of the things I try to do on my platform is educate from the point of view of I used to be that person who was tippietoeing as 24 year old writer in media, I was walking on eggshells around. I was so scared about saying the wrong thing and doing the wrong thing. I didn't want to offend. I really, really didn't. My heart was in the right place and I really, really wanted to say, do the right thing. But I just wanted some help with saying, saying the right thing and would have given anything for someone to help me. But the last thing I wanted to do was someone to publicly shame me and blast me on social media and go “Fuck you for saying this. How dare you!” That is not the way we educate and create change and work together to help that. That to me makes absolutely zero sense. That just creates barriers and shuts people down.

So I've tried to say, okay… This is, for example, a post that I did, showed me on a park bench and I wrote a long post about, “Hey guys. This is me on a park bench, I'm confined to this park bench,” and then wrote a long post about I'm not confined to my wheelchair. It gets me around the world all over the globe, but i'm confined to this park bench and here's why. I just explained, explained why and tried tried to give a bit more nuance because there's just the the idea of just shutting people down and shaming people makes absolutely no sense to me.

And all of the media professionals I work with, they're also looking looking for solutions. And really, really wanting to do and say the right thing. I know as a 24 year old writer pre-disability that wouldn't have helped me, helped me either. So I try and speak to the 24 year old me. How would she have liked to have been communicated to say what I'm when I'm writing writing for my audiences the the non-disabled audiences because I write write for both.

00:24:54:10 Jillian Curwin: I resonate a lot with what you're saying, especially like writing, to you, like writing for younger self. That's kind of what I've been doing with my platforms. It's a space for me to kind of talk to my younger self and talk to the younger generation of little people, of disabled people, of allies, and have a place for these conversations to live because I didn't have these stories when I was their age. I didn't have someone telling me like, it like, kinda again, like that feeling like not alone or like, also like doing the right thing or doing the wrong thing. Like I didn't have that. So that's kind of why I created that. So that resonates with me.

So when did you decide like to really like use like your experience in advertising, in media and then your new disabled experience? Like how did that turn into your advocacy?

00:25:48:12 Lisa Cox: I suppose I… the penny, the penny only really dropped… It should have dropped a lot sooner than it did. I, I started when I, when I came out of hospital. I dabbled in a few, few other forms of quote unquote work and advocacy. I started doing advocacy in another area around women's women's body confidence because I'm I'm completely covered in scars and missing pieces from from surgery. And I wanted to speak to my I mean, my my younger teenage self who was, like a lot of 17 year olds, so insecure and about all the pimples and everything, even though she was completely able-bodied and everything now knowing how the how the media works and everything, having all those years of experience, I didn't know. I didn't know back then. And I thought, I don't, I'd already written two books about some behind the scenes of the media and how it all works. And there's this thing called Photoshop. And etcetera, etcetera. It had nothing to do with disability, absolutely nothing. The work I was doing back then, but it was more a message to teenagers about how how the media works and why, why. It's all that. It's a lot of B.S. Because what happens to to images behind the scenes and everything.

So I started speaking with teenage girls and those sorts of things about body confidence and how you can still be confident with your body no matter what it looks like. Mine's, well, it's covered in scars and missing pieces. And I'm still relatively confident with it. And there was sort of an underlying disability message there that, you know, disabled or not, you can still be okay with it. But it wasn't a hard disability message and then did a did a few more things and then I don't know why it took so long for it to, for me to realize that I suppose I got more and more frustrated that there was this gap in the gap in the market, so to speak - that brands and businesses still, still weren't doing anything around disability. We were the world's largest minority, but nothing was happening. And I, I suppose there was this… I don't know if you'd call it a fear or what you'd call that. I haven't found the right words to to articulate it yet, but I didn't think I was the I didn't think I could do disability right. Because I didn't see anyone doing disability the way I was doing disability. So I'm like, oh, well, I'm not a disability advocate because I don't do it that way. So surely I can't be a disability advocate because I'm I'm not one of them. And then I realized I could do it my way. Instead. And so that that took me a little while to come to terms with that.

I can, I can do it differently. If I'm not I'm not doing it this way. I can just do it my way instead. So eventually I did start doing it, my way instead, and started working with with friends and businesses. And it's funny because ten, ten odd years ago I was sort of knocking on doors at brands and businesses and said, “Hey, guys, you need to be talking, you know, inclusive of disability. It's, it's really, really important.” And they sort of all looked at me and were like, “Have you got two heads what? Don't be silly you little girl in the wheelchair. Bugger off.” And now they're they're either coming back to me, or reaching out. And so all that thing you spoke about, or

00:30:27:06 Jillian Curwin: Right, now they're listening.

00:30:28:13 Lisa Cox: Finally listening. And yes, so that's that's been that's been interesting. But yeah, it's been been really good to see that that brands and businesses are coming on board and I swear they bloody should be and it's it's really really great to see other other business consultants in the disability sector I'm I'm in touch with other business consultants, and I'm like, I've got this work who can I can't do it who can I farm this out to. So, I love connecting and collaborating with other business consultants who I can farm work out to.

00:31:14:10 Jillian Curwin: Right. You said something before in talking about like with finding your advocacy, and like finding your place that like you couldn't do it like the other people, like it was different. Like what was what was different or what couldn't you do?

00:31:35:17 Lisa Cox: Um, I'm not sure. Maybe, maybe it was my tone or maybe it was I just, I couldn't quite find… I mean, I wasn't I wasn't a lifestyle influencer. I wasn't, I wasn't particularly and I maybe it was just my tone, but my interest was, was really working working with business and, business and industry. Business, industry and media and pop culture overlaying that with disability. And I couldn't if there's anyone out there who might be missing them, but just just had a bit of trouble really, really finding that I've since since found found one or two. But yeah. Had a bit of trouble finding, finding that and I think yeah maybe, maybe just my tone. I don't, I don't know.

00:32:58:13 Jillian Curwin: Gotcha. And now that you're been doing this for a few years, for more than a few years now, like what has been the biggest thing you've learned?

00:33:12:16 Lisa Cox: The biggest thing I've learned is that it's okay to make, mistakes that's going to happen. That it's not just okay, it's, it's, it's, it's a good thing because you learn from them and it's almost inevitable that you can't make mistakes. But what's more important is what you do, is what you do afterwards, when when you make them. And there have been some, some good examples of people making include myself some some brands like some some brands that I've worked with making like big, big mistakes, public mistakes. But they've, they've gone out and really, really made an awesome comeback after that mistake instead of just going, Well, like these mistakes have been around diversity and inclusion and things like that. Instead of just going well oh fuck it, we're never doing that again and by making that mistake they've come back bigger and better afterwards.

00:34:34:06 Jillian Curwin: Right. I think that's so important. I think that you see that a lot that like brands will try and something will or something won't work. And then they'll just say, “Okay, well, we tried. Like at least we can say we tried.” And it's like, no learn from it and try to do better. Like it's not a one and done thing. It's ongoing process… ongoing. And like you, you know, again, like you said, look, we're the world's largest minority. And yet I feel like so much in diversity efforts, disability isn't always included. So, and I've definitely seen it working a little bit, you know, in PR, I've seen it as well that like disability isn't necessarily thought of. And then some of the language that is used most often unintentionally but sometimes intentionally is ableist. And I definitely struggle with trying to call it out and trying to make people understand why it's wrong and why we can, you know, why we should change, why we should make a difference in what we're saying and how we're saying it because it is so important.

00:35:42:05 Lisa Cox: Yeah, they actually, there won't be any harm in me naming the what did happen there.

So I started in fashion week, hadn't I, hadn't had disability included forever and I'd always had a problem with, that fashion in general, they'd always had the curve, the curve or the, the, the culturally diverse panel just tick the diversity box and then I'd been interviewing interviewing designers on the red carpet. And they said, “Oh we're so diverse. We're so diverse you can't, you'll have see our…” I would go, “Great I can't wait to see the show,” and I'd sat there in the audience and the models come down the runway and I'm like, “Where are the disabled models?” And, and so I'd written a couple of articles about it, about disability is the less, the least palatable form of diversity.

And I see this time and time again where diversity, you know, whether it's a designer or a brand or something else, will be “So we are so diverse. We are so diverse. We are for every body.” But disability is not seen. It's like disability is the least palatable form of diversity and it always gets shoved off to the side.

And so I'd, I'd written a few articles and a few blogs and reached out to Australian Fashion Week about it and a few, a few other people. And you know, Australian Fashion Week, I will make a point of mentioning them because they did such a fantastic job with it. They decided they, they want to do they wanted to do diversity and inclusion with disability. So what they did was, instead of get a heap of able-bodied people and go “We can decide what to do,” they got disability consultants, including myself and went, "People with disabilities. What do you think?” And long story short, in the first year, the first it was, it was great that for the first year ever, people with disabilities were included multiple times in front of and behind the scenes.

But one mistake did happen that got quite a bit of media attention. So instead of just going well fuck it, we tried diversity and inclusion with disability, didn't work, screw it and just going well we'll never try that again, Afterpay and IMG, who who really have to be congratulated for this, went, no, screw it, we really believe in this diversity and inclusion thing. We're going to come back bigger and better next year. So that's exactly what they did. They did come back bigger and better next year, which was just this year gone, and it was, it was so great to see. It really was. They had designers with disabilities and it was absolutely fantastic. I, they really must be congratulated for the work that they did it just um…They had consultants, again with disabilities, and really included people with disabilities because the nothing about us without us is so, so bloody important. And it's something that so many brands and businesses overlook. And I have read about this multiple times, for different industry publications, to again try and try and amplify this message to brands and businesses who again want to know the right things to do but but need help from from people like you and I to to spread this message, because there are a lot of a lot of voices saying, don't do this, don't do this, don't do this, but…

00:39:49:05 Jillian Curwin: Right.

00:39:49:23 Lisa Cox: Sometimes we do need to give them a bit of help, that, ok, but what do we do? So I write for publications like Inside Retail, who are a business and retail publication, that do have business oriented staff who genuinely do want to do the right thing, but need help knowing what to do, so I, you know, give them assistance with, ok, this is how you do, do find the right things to do and give them… I don't have all the answers, of course. So, I will, I will connect them with the people I know or who, who can assist them with, with other, other, what's the word, assist them with other resources or other people. So, I always like finding out who's, who knows the sorts of things that I don't because certainly I certainly don't know everything.

00:40:51:11 Jillian Curwin: I love. One, I love hearing that because, especially the Australian Fashion Week, because I mean… I started my blog talking about focusing on fashion, it was right before the pandemic hit and like fashion shows were still happening and I was shopping, so that's kind of where I started and talking about the lack of inclusivity in fashion and advocating for accessible fashion, particularly for little people, because I feel like, and I think this kind of reflects a little bit of a larger point and playing devil's advocate for a second here of why I think there is resistance, is because disability itself is so diverse. There are so many types of disabilities, visible, invisible, physical, intellectual that I think they kind of think, and correct me if I'm wrong, like there's a thinking that we can't include everybody. So like, we're just not going to, like we're still going to be leaving people out. So why try to bring, you know…like I think there's kind of that assumption that we just can't include everyone because disability is just as diverse as the population itself.

So I, you know, I think and hope what's happening in Australia Fashion Week makes it way, it's way to New York because seeing the runways here like it's still very there's little to no disability representation either on the runways or backstage.

00:42:20:06 Lisa Cox: Oh, okay because I thought New York was was doing a better job and I haven't seen them.

00:42:28:17 Jillian Curwin: There are some shows that I think are all disability, which I think is great. I think you're not seeing disabled models walking the same runways with non-disabled models. I think it kind of is still separate….

00:42:43:09 Lisa Cox: Oh okay.

00:42:44:05 Jillian Curwin: And it's not just woven into the fabric of the shows.

00:42:48:15 Lisa Cox: Yeah, I can… Yeah, I know New York has been doing it for quite some time for quite some time before Australia, because that was one of the points I made in my initial blog was, or my initial argument was look at New York and Milan and the rest of the world. They're all doing it. Australia is is embarrassing itself because we just look so behind the times, you know.

But you're absolutely right. It goes against inclusion if all the, all the disabled people are in their own little show over here and not integrated into into everything else.

00:43:31:14 Jillian Curwin: Right. And I think, again, it's so important also to have them behind the scenes too To have them be the designers. That's just as important in seeing them on the runway.

00:43:41:16 Lisa Cox: Absolutely. And I was I was asked about about something recently because I was I did some spent some time on the runway and said that the 30 seconds that I spent there was not was not the fun bit. Yes, it was fun. But it was the two years that I spent behind the scenes on Zoom calls with no makeup and no hair in a tracksuit, covered in coffee stains and holes. That was the fun stuff. Doing, doing, all serving, serving the disability community, working on how we're going to get better representation for the disability community in in the media in in popular culture that really excited me not the 30 seconds on the runways. Screw that. That was fun but...

00:44:35:07 Jillian Curwin: The work is more important. Yes I agree with that.

I want to pivot a little bit to change topics just because I'm curious, as an American and it's Disability Pride Month, if companies really aren't celebrating it here the way they did for LGBT pride, like it's not you wouldn't know it unless I think you're kind of part of the community. How it celebrated in Australia? Is it celebrated in Australia?

00:45:03:16 Lisa Cox: Oh again I… probably not. I'm part of the community so I probably know a little bit more. But no, no, not really. I have not seen a single, apart from the fact that I don't get out and about much and do all my shopping online, haven't seen a single product that is branded. I do see a lot on my Instagram feed, but that's only from my my US followers.

00:45:38:22 Jillian Curwin: Oh, okay.

00:45:40:20 Lisa Cox: But it's probably not celebrated as much here in Australia. I don't want to say that it's, it's definitely not is, is the flag and correct me for, sorry, apologies for not knowing, is the flag only relatively new?

00:46:01:00 Jillian Curwin: I would say so because I think, at least in the States, it's the, the month is relatively new because it's in honor of when the ADA was passed, which would be, as of recording this tomorrow, July 26, I think. And it's the ADA is 32 years old. So I think the flag is relatively new. I'll say, though, and I've talked about this before on other episodes that like I'm still kind of coming into my identity as disabled. I've always kinda, I always accepted like a little person and being a dwarf. But I had never necessarily thought of being a little person as being disabled for a multitude of reasons, and so now I'm really coming into that identity. And so I'm still very much relatively new in my advocacy and always learning. So I don't know necessarily when the flag came to be, but I definitely haven't seen it. I'll be curious to see what social media looks like tomorrow from brands.

00:46:55:10 Lisa Cox: Oh, okay.

00:46:57:11 Jillian Curwin: Yeah. See, like who, outside of, like my, the disabled community seeing who celebrates it, the anniversary.

00:47:05:04 Lisa Cox: Yeah because I haven't saw I haven't seen the flag before this year. So I was just wondering if the flag was was relatively, relatively new because I haven't seen it before this year. And that that may just be me not being on the radar, but we're a bit, when I say we, I don't speak for all Australians it could just be me. So we don't seem to be as, because it's a more of a, more of a US thing. I will always stay on it though, cause more of my followers are in the in the States than in Australia though. I'll check out your page and see, see what's happening.

00:47:57:21 Jillian Curwin: Yes, I'll be posting something. I don't know what yet. I'll probably start drafting after we record. So by the time this comes out my disability pride posts will be live. So check it out people.

00:48:08:20 Lisa Cox: Excellent. Okay.

00:48:11:23 Jillian Curwin: It is interesting. I talked to someone else about this, like with everything that's happening here, it's kind of definitely felt hard to feel proud to be disabled because of a lot of things that are happening socially.

00:48:21:22 Lisa Cox: So yeah, it's just I did follow that though. I have been following whether it's the US elections or the fucking abortion laws. Oh yeah. Oh yeah. I had a just, oh fuck, yeah. Okay, yeah, yeah.

00:48:43:20 Jillian Curwin: Yeah, no it's, yeah. Fuck is the perfect word to describe it.

00:48:48:07 Lisa Cox: Sorry, I, I, I, I heard you say at the beginning before we started recording that I'm free to cuss and I'm like, yes!

00:48:53:23 Jillian Curwin: You absolutely are. Absolutely. I'm curious like you…I'm curious then. You, as Australians seeing this, seeing what's happening, what are your thoughts?

00:49:05:09 Lisa Cox: I'm fucking disgusted and it actually got a lot of airtime over here. US politics maybe it's, it did get a lot of airtime over here, and rightfully so. It's, it's enormous and it's disgusting and a lot of a lot of my friends over here are absolutely appalled and also concerned that we did have a conservative government over here and we don't anymore. Fortunately they've left, but it's just horrifying, firstly, for everyone. But especially for, you know, women who don't, who can't advocate for themselves in the disability community. But in so many other minorities or in so many other communities who do need those services, it's just, it's just appalling and it's just beyond belief, honestly.

00:50:12:04 Jillian Curwin: Yeah. I think, and I'm not, I'm speaking for myself. I'm not speaking for other women or other women in the disabled community, like since it was leaked, like what was going to happen, like it just felt it made it so much harder, I think, to be proud to be a woman, to be proud to be disabled. And I think, you know, with Pride Month and with everything, with Disability Pride Month and with everything happening right now, it's definitely made it harder.

But I feel like it's also stressed the fact that it's so important to feel proud, to use these platforms that we've created for ourselves to speak up, to speak out, because if not, like clearly other people aren't going to do it for us.

00:50:49:09 Lisa Cox: Yeah, I, I all I can, the day it came out, I had a post ready to go on why my husband and I chose not to have kids, but it just, it just felt like the worst timing in the world. So obviously I didn't post that. So all I, all I did was start sharing, sharing the, using my platform to share share the stories of women who did have things to say and did have lived experiences so… I didn't have a lived experience, so I didn't feel like I had had any anything to add, so I, yeah, used used my platform to share those, those lived experiences that women who had some really powerful stories and I still, still feel absolutely sickened by it and yeah, what it could mean for other things, as well the gay community, isn't getting the full effect.

00:51:52:20 Jillian Curwin: Yeah it's, it's, it's a scary time right now but I think, again, it stresses the importance of using our platforms to speak up, to speak out, to continue our advocacy in the ways we do it. I think the work you are doing is incredibly important because I mean, the representation in the media, I think is the biggest hurdle.

And again, I talked about this, like both sides of the aisle are ableist. It's not one, like one side is not doing it right, and the other side's not doing it wrong.

00:52:21:00 Lisa Cox: No, absolutely not.

00:52:22:22 Jillian Curwin: No, they're both doing it. They're both doing it wrong. And I like, the importance, again, of seeing accurate and authentic representation, having disabled people in the room. Again, nothing about us without us. Like, it's so important, right? Especially now. It's so important.

00:52:41:06 Lisa Cox: Yeah. That's I suppose that's one thing I really want to stress is that there is no right or wrong way for anyone to be disabled and the the amount of hate that just within our own sector around you said this or you're this or you're that. I'm like, guys, we're not working together here towards the same common goals, hating on each other for, you know, within their own, within our own sector about who chooses to shop in what way with with the disability is is just not is not helping anybody. It's really, really, really harmful. It really, really is. Yeah. Yeah, that's...

00:53:37:07 Jillian Curwin: Exactly. Yeah. I'm gonna pivot again to ask, who do you look up to?

00:53:49:02 Lisa Cox: I look up to all of the people who are choosing not to live life by social expectations or other people's expectations. So, some of them might be friends of mine. Some of them might be your listeners, some of them might be, some of them might be my followers and friends and family, but who are living life on their terms and not social expectations. And just those, they're crushing those damn social expectations, right? Yeah. Living life. Living life on their terms. Not coloring in the lines.

00:54:37:18 Jillian Curwin: Yes. Love that. Are there any questions I have not asked that you would like to answer?

00:54:51:22 Lisa Cox: Not that I can think of.

00:54:58:02 Jillian Curwin: That's totally that's an acceptable answer. Everyone is always so afraid to say that. I'm like, that's the point of the question so totally, totally okay.

Where can my listeners follow you and see all the amazing work you're doing?

00:55:13:17 Lisa Cox: Okay. The best place is on Instagram, which is @lisacox.co. LisaCox.co. And that's also my website.

00:55:26:14 Jillian Curwin: Love that. I will have links to those in the show notes. Lisa, it has [been] an absolute pleasure talking with you. I do have one final game that I kind of do with my guests, before it's kinda breaking the ice, but it's at the end. So I have five categories and I just want to hear your favorite in each one.

00:55:46:02 Lisa Cox: Oh gosh, okay.

00:55:48:22 Jillian Curwin: People do say these are the hardest questions I ask. I will say that up front. Favorite book?

00:55:57:12 Lisa Cox: Oh. Okay, at the moment I'm reading, or I only listen to audiobooks now since my sight has gone, but I'm reading Dare to Lead by Brené Brown. But I grew up reading Eden Blyton and I love any Eden Blyton.

00:56:16:08 Jillian Curwin: I love that. Favorite TV show?

00:56:20:08 Lisa Cox: Dog House. Me and my dog love it. It's over here in Australia and he loves watching all the puppies. It's about rescue dogs and people come in and they want a rescue dog and they, they pair them up with rescue dogs and oh it's so cute. And he watches it and they yeah.

00:56:52:02 Jillian Curwin: I know I would, that would be my favorite show too. There's no question about that. Um, favorite drink?

00:57:01:21 Lisa Cox: Espresso Martini.

00:57:06:10 Jillian Curwin: Yes. Favorite piece of advice you've ever given?

00:57:11:00 Lisa Cox: Don't be afraid to fail.

00:57:14:07 Jillian Curwin: Love. And the final one. Favorite piece of advice you've ever received?

00:57:19:13 Lisa Cox: Don't be afraid to fail. No, my dad always says keep smiling.

00:57:29:06 Jillian Curwin: I love that. That's perfect.

00:57:31:16 Lisa Cox: He always says it.

00:57:35:11 Jillian Curwin: Yeah I love that. That's a perfect note to go out on. Thank you so much again, Lisa, for coming on. The final final thing I have to ask of you is in your most badass voice possible to remind my listeners that height is just a number, not a limit.

00:57:51:21 Lisa Cox: Height is just another not a limit.

00:57:56:16 Jillian Curwin: Always Looking Up is hosted by Jillian Curwin, edited and produced by Ben Curwin. Please make sure to rate review and subscribe and follow on Spotify so that you never miss an episode. Follow me on Instagram at @jill_ilana and the podcast at @alwayslookingup.podcast for updates and check out my blog JillianIlana.com for more content about what it is like to be a little person in an average sized world.

Thanks for listening. See you next week.

Listen Here

Spotify

Apple Podcasts

Podcast Page