Cerebral conversations episode 9 let get visible

Episode 6 | Let’s get visible | Hannah Diviney & Tara Moss on Inclusion

Disability advocate Hannah Diviney joins Tara Moss to dig into the details of what it’s like to live with a disability and tackle stereotypes, mental health issues, and barriers to work and education. How do Hannah and Tara overcome the stigmas around disability and women? What does living with a disability mean for our sense of identity? And really, why isn’t there a disabled Disney princess? (Hannah’s working on that.)

Hannah Diviney is a writer, founder of the Krazy Kosci Klimb, supporter of CPActive (a new initiative campaigning for change) and Co-Editor in Chief and Creative Lead at Missing Perspectives. For Hannah, visibility is so important. As she says, “visibility of disabled people in relationships, or disabled people being parents: that sort of visibility is very helpful for me in combating against my insecurities around whether I can have that, whether that’s in the future for me..” 

Tara Moss is an author, former model and ambulatory wheelchair user living with Complex Regional Pain Syndrome. Tara uses her public profile to help de-stigmatize disability, chronic illness and chronic pain. In 2020, she accepted the honorary role of Pain Champion with Pain Australia.

Listen to Episode 5 here:

Check out Hannah’s work at Missing Perspectives

Sign Hannah’s Disabled Disney Princess petition 

Follow Hannah on Twitter @hannah_diviney and Instagram @hannahthewildflower 

Check out Tara’s books and blog at taramoss.com

Follow Tara’s two wonderful Instagram accounts: @Taraandwolfie and @taramossauthor

Episode Transcript 

Ben McAlary: Hello, and welcome back to Cerebral Conversations, my name is Ben McAlary.

Andy McLean: And I’m Andy McLean. Hello. Today is World Cerebral Palsy Day, and so we’ve got an extra special episode with two extra special guests Tara Moss and Hannah Diviney. We absolutely cannot wait to share this one with you.

Ben McAlary: Now I’m just going to go through a few of Tara’s achievements, Andy, so just bear with me for a moment. She’s a Canadian Australian author who has worked as a documentary maker and presenter. She’s an academic, a broadcaster, a model and a UNICEF national ambassador. Now, back in 2016, Tara had a hip injury that left her with chronic nerve pain and mobility issues. She’s since become a powerful voice in the area of disability advocacy.

Andy McLean: Now, if you’re listening to that, you might think, Oh, Tara is quite a high achiever, but I’m going to match you, Ben. Right here, I’ve got Hannah Diviney now. Hannah is also a disability advocate. She’s also a writer. She’s the founder of the Krazy Kosci Klimb. She’s editor in chief of Missing Perspectives, a 2020 young Australian of the Year nominee, and as if all that wasn’t enough, she’s also campaigning with an international campaign for a disabled Disney princess. How cool is that?

Ben McAlary: It’s amazing now, and we could talk all day about this one, but look, we don’t want to give too much away. Nobody can discuss the issues covered, as well as to people with lived experience of disability. So that’s enough from us. Let’s hear from Tara and Hannah.

Tara Moss: Oh, Hannah, I’m so glad we’re finally getting a chance to talk.

Hannah Diviney: Yes, me too.

Tara Moss: We were we were kind of chatting beforehand about some of the myths around disability. And I guess as a writer and a speaker, I’ve been really focused on stereotypes for a very long time. And since I’ve become a disabled person, it has really struck me how relevant this conversation is to disability. There’s so many stereotypes and myths. It’s just quite mind boggling how misrepresented disability has been in popular culture and in the public’s mind. Would you mind commenting on that? Like, what are some of the myths you end up coming across in your life?

Hannah Diviney: Well, one of the main kind of myths is, and this was definitely when I was a lot younger, it doesn’t happen so much now, but kind of an assumption that because I’m in a wheelchair, my intelligence on my lack ability to perceive the world is somehow, I guess damaged in a way, so people would be surprised when I would be able to hold a conversation, or that I was going to normal school, or that if we were listening to something in the classroom that I would be able to ask an intelligent question or something like that. And I guess that also happened too, a little bit back pre-COVID, when I was travelling to and from uni, you would see people’s eyes kind of widen and surprise if they’re sitting next to you on the train. And they happened to ask you, like where you’re coming from. And I’m saying, Oh, I’ve just come from uni. They’d be like, this moment of, oh. OK. And then you’d be like, yes!

Tara Moss: Surprise, surprise, surprise, here I am, a fully formed human being having a conversation with you!

Hannah Diviney: Yeah. And then I guess the other interesting one to me – and I don’t know if this is specific to Australia because obviously we grow up putting sport on something of a pedestal – but I would often be asked as a kid, “So what’s your Paralympic sport going to be?” And part of me would be like, well, it’s great that you asked that question and that you think I’m capable of doing that, on the one hand, second, you’re not asking my sisters what their Olympic sport is going to be, and you’re not assuming that every able-bodied kid even wants to go to the Olympics. So why are you assuming that that’s like the only level of success for a disabled person?

Tara Moss: It’s such a narrow focus, and I guess it speaks to how little visibility there is for disability –  there’s the Paralympics, and then there’s what we see in movies, and you know, the sum of those parts does not get anywhere near the whole of real people’s, real disabled people’s lives and the variety of their experience, or even disabilities.

Hannah Diviney: Well, I mean, it definitely affected the way I perceived what my adulthood might look like as a kid. Like I didn’t really see any disabled adults growing up. In fact, I can remember the first time I saw a disabled woman and she had her wheelchair on top of her car, like in a roof rack style thing. And then she pressed the button and the wheelchair kind of came down, and I remember thinking that was the coolest thing ever.

Tara Moss: That is the coolest thing ever. I want that. I want that. That sounds awesome.

Hannah Diviney: Yeah, right? But I had literally never seen anything like that before, and I’ve never seen like any disabled teachers or just even people like out in the community, just living their lives. Like, obviously, now that I’ve joined the advocacy community online and stuff, I’m exposed to a lot more disability and a lot more people doing amazing things.

Tara Moss: Let’s talk for a moment about social media. Because certainly through the pandemic, but even far before then, I think it was really online where I began learning the most about disability – before I became a disabled person myself – but certainly since as well. It’s where I’ve kind of learned the most. I’ve learned the most from other disabled, often women, but really just the whole disability community. How did we ever get by before this way of finding each other?

Hannah Diviney: Yeah, I’m really not sure. It would have been like trying to, I guess, do a puzzle without knowing what the picture should look like. Yeah, it would have been really difficult to navigate, like some of the things that I’ve learned about the ways in which we’re conditioned to think, and internalized ableism, and all of those things. And just not seeing the fact that I have to rest as a weakness, or that kind of thing, that’s been really helpful, and that’s all stuff that’s been made clear to me through the disabled community online.

Tara Moss: It’s disabled advocates that have made such a huge difference. And I guess outside of the disability community, people might imagine a lot of that advocacy is like work to try to educate non-disabled people. And yeah, that’s of course that’s part of it. A lot of us can get a little bit tired of just that, you know that element. But I think a lot of the focus really is on community and solidarity. It’s actually about being visible so that someone who’s out there right now who, like you said, doesn’t know what the puzzle looks like, knows that they’re part of it, but just doesn’t know how is this going to play out? What do I do? How do I cope? Can actually see someone else and go, Oh, I see the solutions they’re using to get from A to B, or I see how they’re managing their condition. Yeah, and their disability. And they can see rich and interesting lives and ways to workaround. You know, definitely, we’re constantly finding workarounds for things other people might take for granted and the vast majority of those things I’ve learned from either just my own hit and miss experiments or disabled people. Do you have any examples that you want to share of kind of those like little tips and tricks that have helped?

Hannah Diviney: Probably the whole idea of like pacing yourself, that that was a really new one. Because obviously, like you, I struggle a great deal with pain and fatigue and especially with cerebral palsy. Fatigue is not something that anyone ever brings up to you as something. So when that first started hitting, that was like, What the hell is going on? Something else must be wrong. Hmm. Because nobody had ever said, Hey, by the way, it’s probably likely that you’re going to start feeling pretty fatigued as you get older. So yeah, pearly pacing myself is the number one kind of work around. But even just the visibility of disabled people in relationships or disabled people being parents or that kind of thing, that sort of visibility is very helpful for me in kind of combating against my insecurities around whether I can have that, whether that’s in the future for me, whether it’s something that other people would kind of want to join the party on, I guess if that makes sense.

Tara Moss: Yeah. Well, just seeing that disabled people have whole lives and friends and we’re just human beings like everyone else and we just, you know, have these particular things that we have to do differently because of our disabilities, or that we can’t do because of our disabilities. And the idea, I guess, is so often about a disabled person and carer, or disabled person by themselves. And there’s no one else in the picture. It’s just that’s simply not the reality. I find that when I’m advocating on accessibility issues, often even a very well-meaning council, will simply not factor in that a disabled person might need access to a place that they’re going to bring their child to, or they’re going to bring their whole family to, and they’re going to have friends.

Hannah Diviney: So yeah, and then they’re like, Oh, whoops, we didn’t think you would come here like, Oh, yeah, that’s right.

Tara Moss: It’s like, if you make a place inaccessible for one disabled person, then there may be, you know, five people in that immediate family then that can’t go there, or 50, depending on how big the group is going to be at any particular time. So I think that’s a really good point Hannah, it’s just the fact that the visibility online allows us to see people’s lives being lived. And rather than this sort of this individual focus on Hey, this person has a particular difference or, look at their mobility aid, or whatever it is, it’s like, no, look at their whole life as well. And just seeing the context in the bigger picture.

Hannah Diviney: And I think as well, unfortunately, in mainstream media and society, people still sort of cling to this image of the sad disabled person, and look in the name of being completely honest about things, there are days when you do get sad or you do get angry or you’re kind of almost grieving for the life you didn’t have, or in some cases, the life you lost, depending on what you what your experience of disability is. But I think the fact that disabled joy and disabled fun is so often missed in society, really doesn’t do much for people’s understanding of who we are as rich human beings. I guess I was wondering, in your experience, when you became disabled, were people expecting you to sort of curl up in a ball and kind of hide away from the world?

Tara Moss: Yeah, look, I think there was an expectation that it would just go away. And I think I hid away from the world. I think there was some internalised ableism there, as well as just being a bit at sea. I just didn’t know what was going to happen and how to deal with what was happening, because no one would just tell me, Oh, this is this change in your life, so prepare in these ways. And there’s no textbook to explain things to me.

Hannah Diviney: I really wish there was a textbook because that would make life so much easier.

Tara Moss: Oh, wouldn’t it? Wouldn’t it? Especially for those of us who have dynamic disabilities and, you know, the majority of disabilities are invisible or non static as well. And I’m one of those people who could look the same on the outside, but I could no longer weight-bear comfortably. And I have a bunch of nerve pain, so people didn’t have an expectation that I was disabled. It just sort of had to keep being an issue, keep being a limitation for a long time before it was, all right, I’m not going to be putting the cane away, I really need it. And the cane also became a walker, and then a wheelchair. And that was when my life started coming back, because I needed those things for my freedom and participation in life. And part of the reason I think I initially just didn’t understand what I needed to do was because I didn’t know that I was disabled or I didn’t know, you know? It’s just not as black and white as most people tend to imagine. So once I kind of accepted, oh yes, here I am with this condition and I had a diagnosis – which is a privilege some people don’t get – it helps, it’s like, oh, OK, the penny drops, all right, so all these things I’m experiencing are from a cluster of symptoms around the same issue – complex regional pain syndrome. I can read up on it. I can understand it better. When I’m working with physical therapists and specialists, we can all understand it better. But that, for a lot of people, doesn’t happen overnight. It just doesn’t happen that easily. So it was a long process. And I think for some of that, I just waited for it to pass, or I kept going to see doctors, but I didn’t necessarily know how to use tools to help myself get out. And I didn’t know that I would need them in six months’ time, or a year’s time and so on. So the visibility that I have now and the connection I have with the disability community, because that’s one of the lessons that we all kind of have by being visible, is being able to recognise each other and other people who are experiencing mobility problems, actually recognising it. Oh, it’s OK for me to use a cane in public because it hurts to walk and the cane helps. If it helps you, you have permission to use it. That’s OK. The diagnosis might still come, you don’t have to wait at home for kind of permission to say, Oh, I need this. And that’s some of the feedback that I get, well, several times a week, and sometimes several times a day, from people going, oh, I felt okay to speak to my physiotherapist about using a wheelchair because I really needed one years ago and just, you know, stubbornly didn’t or was never told by anyone. This should be an option you’re considering.

Hannah Diviney: And then now I’m in a position where it’s like, Oh, this would’ve been so much easier.

Tara Moss: Yeah, this would have been so much easier. Yeah, it’s just it’s a complicated journey and it’s never the same for any two people. And I think that having visibility in the media and in popular culture and social media allows us to see the variety and reality of disability and actually identify when we’re one of those people, or we know someone else who’s one of those people, and could be helped, or could improve their lives in some way.

Hannah Diviney: I’m really lucky in that my diagnosis came pretty much straight away, because I was born three months early and with a bleed on the brain and all that stuff. So doctors were OK, we are looking for the answer to this because something is wrong. So yeah, I was able to be diagnosed really early and start receiving the support that I needed from about 12 weeks old. So that early intervention and that kind of immediate acceptance of OK, everyone here knows that this is a thing that is happening in my life, I don’t have to fight to be believed, I don’t have to sit in a doctor’s room and be..this is what’s happening, and nobody can explain why. It’s like that is a privilege in itself. And obviously, there’s things that come from living with a disability from birth that aren’t so great. But I definitely think having that belief and that immediate sort of, well, this is just how your life is going to have to be, if you want to even be a functioning human, helps a lot with that.

Tara Moss: I think it would be less confusing in some ways, but I also think you can speak well to the challenges of being a kid like yourself and having other kids not understand, or having you not understand because you can’t see people like you represented in the wider world. It’s like, how do I, if you can’t see it, can’t be it, you know, what am I going to become? How does this work? It’s that big question you would have, anyone has, when they encounter disability in their personal lives, but certainly as a child, it’s a huge challenge.

Hannah Diviney: Yeah, it used to be very confusing and especially because my two younger sisters are extremely sporty, extremely fit, well-able to do things with their bodies. And that sort of, I guess, gap between us sometimes felt really pronounced because even though I’m the oldest, sometimes I would feel like the youngest because I need so much help, or because my sisters can go and do a cartwheel and I’m like, Yeah, well, that’s not happening. Or even just running up the stairs to grab something. So yeah, I think definitely as a kid, there’s a level of trying to figure out what it means. And I think part of the power of visibility, is that it would have really helped me to navigate that more smoothly than I have ended up, especially because I kind of started realising I was different when I was, I think three. I was at daycare and I saw my best friend at the time, I remember it clear as day, stand up from the table after we finished our lunch. And I watched her stand up and saw what her body did, looked down at my legs and went, OK, that’s what we’re going to do. And then when nothing happened, I was really confused being like, wait, why can I do that? And then having that whole, well, you’re different, this is what happened, you’ve got this condition, cerebral palsy, all this stuff, the blah blah blah. And this being the big…but why? I guess because little kids especially ask why so much. And there not really being an answer for that was really tough, especially because I’m a particularly curious person – I was the kind of kid who would ask questions from the time I got up in the morning to the time I went to bed at night, to the point where my parents would be like, OK, that’s enough questions for today, like, Oh my God, just like, chill out for a second. So having this big question about yourself, that kind of no one could answer. And obviously, they still really can’t answer, like science and medicine is working it out, and it has come a bit closer to sort of figuring out what might have happened, but they can’t ever be 100% sure that this is the reason. And I think having that giant question about your life is really weird for your identity because it’s kind of like it shapes itself around a black hole, almost.

Tara Moss: Hmm. Well, with complex regional pain syndrome, again, I’m amazed at how little science knows about it. You know, it’s been report reported since the Civil War, and it’s had a couple of different names and there’s a lot of documentation on it and a lot of medical journals writing on it specialists around the world. But they still can’t agree precisely on how it happens. It’s generally an injury to a limb. Usually there’s a nerve injury, but sometimes not.

Hannah Diviney: It must be so frustrating.

Tara Moss: Yeah, and it’s the treatments specifically that people can’t agree on because people are so different and the way they respond is so different. And that’s a tough thing. I think what a lot of non-disabled or non chronically ill people might be surprised by, is that say you finally get that diagnosis, then you want there to be a treatment that works for it, and there just isn’t, you know?

Hannah Diviney: It’s not like a one size fits all box, it isn’t like, AHA, well, this is what we do.

Tara Moss: It’s not a one size fits all. And even though a multi-disciplinary approach, which I think when it comes to pain issues is absolutely, probably for most chronic illness issues and disabilities, but certainly with chronic pain, I can say a multi-disciplinary approach is vital because nothing’s going to work without a multidisciplinary approach. Even so, there’s not agreement on exactly what that should look like, how much of each of the disciplines are involved, how much of it’s going to be physical, pharmacological medical interventions, you know, how, what does that look like? You can speak to the best in the fields, and they actually don’t have an answer for you. They have a lot of questions, like this might work and this might work, and…

Hannah Diviney: Yeah, and I think one of the things that I often say that I’m grateful for is that the things that I can’t do, I can only imagine what they feel like, oh, look like. Whereas I think for anyone who acquires a disability later in life, you actually have that physical memory of being able to do something, and having that kind of be taken away. I guess I’m curious, like how you’ve kind of coped with like adjusting your own expectations for yourself.

Tara Moss: That’s a good question, Hannah, and I wish I had a great answer. I’m still working on. It is the reality. You know, like there’s usually grief associated with this. And yes, and I’m still there. You know, I obviously have lots of good days and I think I’m a pretty darn positive person. Just listen to me pretty darn positive. I sound so Canadian right now! And I say that I’m a really positive person and self-motivated and always looking for ways to do things and to keep going and to improve things. But of course, there’s a lot of grief, and I just remember a particular day when I was in Australia last year and I was a couple of blocks from my house sitting on my walker or rolling, or there’s a little seat on it, and I have to sit down any time I’m standing for more than…sometimes it’s a few seconds, sometimes it’s a few minutes…I can stand before the pain gets really high and I get dizzy. So I was sitting there and these hikers walked past, and I just remember the incredible grief that sort of flew into me and just hung on me because I was one of those people for so long. Like, I hiked that track so many times and was one of those people who just would chat and walk. Like it’s, you’re not doing anything, you’re on a level surface walking with your friends, totally normal. And the fact that I can’t do that now and wouldn’t be able to take those hikes on those tracks anymore was something that I grieved. And I don’t know that I’m on the other side of it, but I’m certainly adjusting to, or beginning to, accept that there’s this whole other world that I can experience differently now and that those things that are in the past are things that I did get to experience. I mean, the grief coming from loss means that you had something and no one can ever take that away from you. You know, I got to take those hikes. That’s a privilege that I was able to do that. And I guess now I recognise that it was a privilege and I get to hang onto what that was, without an expectation that it will be again. I mean, I just can’t do those hikes now.

Hannah Diviney: That’s a really great way to look at it, I think. And do you find that like in terms of like processing that emotion that like writing helps?

Tara Moss: I think writing helps because writing has been a part of me since I was a little girl.

Hannah Diviney: Yeah, me too.

Tara Moss: Writing is a way to experience and create worlds. You know, it’s an incredible thing to do. Whether you’re writing for yourself – which was how I started – or writing professionally – which is what I do now – writing is incredibly freeing. I think books are the most incredible time machines and transport that you can hold in your hand. You can go anywhere, any time with a book. So I love books, and I think writing has been a lifesaver for me through this experience, and before.

Hannah Diviney: Yeah, I would agree too. So I think I was four when I wrote my first story.

Tara Moss: Do you remember what it was about?

Hannah Diviney: Yeah, it was about, so all the kids in my preschool kind of went down for nap time. It was around Christmas, and when we woke up, we weren’t at the preschool anymore. We were in the North Pole to visit Santa and to tell him what we wanted for Christmas that year. I have it somewhere around here, I have to find it. And then basically, we got to tell Santa what we wanted, and then we just kind of felt sleepy again and woke back up in the preschool and were like, Guess what? We got to go to the North Pole! Just like this really cute, magical kind of story? And my mom had to write it out for me. But I remember kind of that feeling of almost like a door being opened that I didn’t even know was there and then being like, Oh, OK, this is fun. This is what I’m supposed to do. So as a kid, I would often write with the same dedication that my sisters would go to soccer practice or to ballet or whatever. The fact that I get to do that now for a job, and people pay me, and people are actually reading, my work is huge to me!

Tara Moss: It’s a dream job.  And I think that having disabled writers work out there is one of the key parts of changing the myths and issues of stereotypes around disability. For too long, have we had a situation where non-disabled people were writing about disability and getting things wrong, you know, and now having disabled writers out there, and being read in our stories, being read is just incredibly important. I know this is a passion of yours as well, like with Missing Perspectives. Can you tell us a bit about that?

Hannah Diviney: Yes, Missing Perspectives is this kind of brand-new initiative – we’re hoping it will be a not for profit very soon – that seeks to address the marginalisation of women and girls globally around the world. Because we came across this report from the Gates Foundation that basically said that women were deeply underrepresented in the news, media, decision making, policy, all of those kinds of things. And as a result, they felt really disconnected from those arenas. And obviously, like I know for myself personally, the power that I found in being able to tell my own story and have ownership of that. And I guess that’s the similar experience that we want to give to as many women and girls as we can. So at this stage, I think we’ve had contributors from over 40 countries and we’re being read in about 80.

Tara Moss: I think it’s amazing! Congratulations!

Hannah Diviney: It’s absolutely bananas to have happened this fast as well, it’s a bit like being shut out of a rocket

Tara Moss: In the best possible way!

Hannah Diviney: Yes, in the best possible way.

Tara Moss: But Missing Perspectives, it’s a great name, and a great aim, because it is really one of the biggest challenges that marginalised groups face – representation and just being heard. I know some of those stats, in fact, I wrote a book called Speaking Out, which was really spurred on by the fact that fewer than one in four of everyone in the world that we hear from or about is female. So fewer than one in four. The rest are all male. So those are the people we’re hearing from or about.

Hannah Diviney: That statistic just makes me like, just sigh deeply.

Tara Moss: You think like, I’d love this to be different in like 2021…and here we are. So I do occasionally see, really encouraging shifts in stats. But of course, you need it to continue long term, and you need it to also be brought in across groups. And I have found that when people talk diversity and inclusion, often they leave out disabled people are disabled women.

Hannah Diviney: Yeah, it’s almost like they kind of forget that we’re there and I’m like, Hello, yeah, that’s right.

Tara Moss: And disability cuts across all other marginalised groups as well. So obviously there are disabled women, there are disabled women of colour, there are disabled indigenous women. And in fact, there’s often a disproportionate number. So yeah, it’s really I think, missing perspectives. And just acknowledging that those perspectives are important and need to be heard is such a great focus. And I just can’t be happier with what you’re doing there Hannah.

Hannah Diviney: Well, I feel really grateful because I was originally just brought onto that project as someone who was going to write a piece because a friend, Phoebe Santilan is our founder, and she reached out and was like, Hey, I’m doing this thing. And her mum used to be a teacher of mine, and she said, “My mum said you were a really good writer, so I was hoping you could write a piece” and then eventually I’ve ended up becoming, I guess, the quote unquote editor in chief. I love it. And we’ve really built it together. So yeah, I feel really lucky to get to do that. And there’s some really exciting partnerships that we are pursuing and building at the moment that I can’t wait for people to see the content that we make.

Tara Moss: There’s some other pretty exciting news for you. Young Australian of the Year. Tell us about that.

Hannah Diviney: So in an unbelievable series of events, I have been nominated for Young Australian of the Year for 2022 for my advocacy work, and the nomination in particular comes from this event that I do called the Krazy Kosci Klimb, which I’m the co-founder of, where basically we help kids with disabilities – mainly cerebral palsy, because we do it through Cerebral Palsy Alliance, but we have done other disabilities – conquer Mount Kosciuszko, which is one of the seven summits and Australia’s highest point. So someone who’s done a couple of climbs with me through that, kind of jokingly, well, I thought he was joking, said to me at the end of the last one, “Oh, I think this is Young Australian of the Year material”. And I sort of laughed it off because what else are you supposed to do when somebody says something like that to you? But he was actually quite serious. And yeah, it’s been amazing so far, even just the amount of interest since announcing my nomination and the amount of kind of eyeballs that it’s got in to my work, into the things that I do, is it’s pretty crazy to think about.

Tara Moss: It’s not crazy at all, because it’s a well-deserved nomination, and I’ve got to say, I’m so pleased for you.

Hannah Diviney: Oh, thank you.

Tara Moss: You know, it’s a well-deserved bit of recognition for all the advocacy work you’ve been doing in it. Thank you. We can’t even encapsulate all of it in this one conversation, but it’s appreciated. It’s making a difference. And I’m really happy to see you recognised.

Hannah Diviney: Well, that means a lot because I think the one thing that I’m always conscious of is are people in the disabled community going to be OK with me having this quote unquote success? Look, I don’t want anyone to ever feel like I’m taking up too much space or like I’m taking away someone else’s chance to have a voice or something like that. So to have that support really means a lot.

Tara Moss: You have that support and not just from me, so you don’t you worry about that and not only that, but this idea that the disability community has this very small slice of the pie, which is unfortunately still true, we’ve just got to expand that pie, baby! We’ve just got to, it’s got to have more of our voices out there. And, you know, that recognition is incredibly important for all of us. So you are paving the way. And I love it.

Hannah Diviney: I’m trying. We’ll see how it goes, see how we go. It doesn’t get announced till January, but fingers crossed it progresses to the to the later stages.

Tara Moss: Yeah, but already, even just being nominated, it’s just great to have that recognition, and I think my view is that it doesn’t have to help the whole community for you to be nominated, but I think it is. I think it is. So that’s another bonus. And yeah, I don’t like that as disabled people, we feel like we’ve got the weight of expectation on us for a whole community, huge segment of the population. Of course, we can never live up to this idea that we have to represent everyone, we don’t. But I do think that your being recognised is really helpful to all of us. And so thank you.

Hannah Diviney: You’re very welcome. Thank you for everything you do, too.

Tara Moss: I know we’re both super passionate about representation and disabled people’s stories and visibility. And just circling back to childhood, and needing to really see disability normalised, and see examples of disabled people around you. I know that you you’ve worked for or advocated for Disney to have a disabled princess. Can you tell us about that?

Hannah Diviney: Yeah. So that comes from growing up a massive Disney fan, and also I didn’t see a disabled character in my life on screen until I was 10, so that’s a whole decade of my life, not seeing anybody who sort of look like me and being like, where am I like, why am I invisible in this whole thing? And just for anyone wondering, that was Artie Abrams from Glee. I was really excited because I was like, you can sing, you can dance, blah blah blah. Like, he’s got friends. All of these things that I that I love doing and I was super insecure about. I kind of felt like they were finally recognised and I was like, OK, I can do this – this is a guy that’s done this and he’s doing things that I love. And all of that was going really well until there was a sequence in the second season, I think where he kind of got up and was doing some dance routine where he was moving around normally. And I was like, oh, wait, a second, he’s actually able bodied. Cue my like rage. It’s normal, acceptable for actors to kind of cast off my life when a director yells cut. And I know we’ve seen a lot of harmful representations in the disabled community, and we’ve talked about this just among ourselves outside of this podcast anyway, but the whole idea that one of the easiest ways to win an Oscar, or to win some sort of award, is to play a disabled person because of that physical transformation as an able-bodied actor.

Tara Moss: And, of course, in the disability community that’s often called cripping up. Yeah, so it is viewed by many disabled people as equivalent to blackface or some other appropriation culturally or in terms of ethnicity. And here you have it still quite acceptable to you, to have a film sweep up all the Oscars because an actor is, you know, quote unquote brave enough to represent someone who’s disabled. And this is in the context of the fact that many disabled actors can’t get work. I mean, huge limitations there. So the roles that they would be really uniquely suited to representing like authentically and accurately and using their skills with, they still are not getting those parts. So that’s definitely a point of, I think, really legitimate disappointment from the disability community. And I share that view as well. I find it really disappointing.

Hannah Diviney: So I think specifically with Disney, the idea kind of came from going to see the Pixar film Inside Out in 2015. And for anyone who hasn’t seen that film, it’s a really beautiful representation of mental health. So basically, they’ve personified the emotions inside this little kid’s head. So you’ve got joy, sadness, anger, fear and one under that I can’t remember. It’s this beautiful film and has so many levels to it, as any adults who have watched kids movies know, there’s always a level of joke that you’re only ever going to get if you’re an adult. And I think there’s so much nuance, depending on where you are in childhood in this film, and I thought that was really clever to treat such a kind of taboo, I guess an unexpectedly heavy topic for a kids film, with such care and nuance. And I guess from there, I sort of thought, well, if they can do that, it doesn’t feel like it would be too impossible for Disney to create a disabled Disney princess. So we launched the campaign December 3rd last year, which was International Day of Persons with a Disability, and that’s celebrated on December 3rd every year – so put that in your calendars, everybody – and basically the idea to choose a Disney princess was this really strategic feeling from my end that they’re some of the most visible children’s characters in the world. They’re the ones who you see on the bedspreads, on the lunchboxes and the toys, books, birthday parties. So if a disabled Disney princess was made, she would really be everywhere.

Tara Moss: And please let the storyline not involve her magically becoming non-disabled, so therefore be more accepted – please no! I think that’s a wonderful campaign. I hope Disney takes the work you’re doing there and all those signatures, and goes, yeah, this is an area we have not explored and it’s, you know, really important. I mean, depending on which statistics you use, about a quarter of the population is disabled, like it’s not a small group. Actually, we’re not we’re not a fringe group.

Hannah Diviney: So and it’s the only marginal group that anyone can join at any time too.

Tara Moss: That’s it! I’ve got my hand up there.

Hannah Diviney: Yeah, right. Now, one of the things I’m curious about is since you’ve become disabled, has there been this perception that all the work you ever do is only ever going to be about disability from now on?

Tara Moss: Probably. I’m not very good at living up to people’s expectations. I tend to do things my own way. So if everyone thinks I’m only going to write about disability issues now, they’re they’ll be disappointed because I have some pretty varied interests. Having said that, I do think it’s really important to speak out about, and focus on, disability issues. So I’m certainly doing that and it’s given me more insight to be able to do that advocacy better, you know? But yeah, I’m a fiction writer and I’m going to represent what exists out there, including people with disabilities, but it’s not going to be the focus of the story. It’s just part of the world that we live in. Like Sam Baker, who is one of the main characters in the War Widow. My latest fiction book is set in the 1940s. Yep, he’s a disabled war vet, so very true to the time. And like, how could you write a book that’s a post-war novel without mentioning disability, for starters. You know, a really important segment of the population, a larger segment, came back from the war with psychological and physical trauma and injury and disability. You know, that’s real. So he’s a character that’s in there along with other characters that just are people who have disabilities. And it’s not the focus of story, it’s just that these are people that are there.

Hannah Diviney: Yeah, I think that’s really important.

Tara Moss: They would have been there, they were there. And, you know, disability is still there today, always and every community. But I just think there’s a benefit in being really direct and advocating on disability. But there’s also benefit in just having it as part of the picture and normalising in that way because that’s real, that’s life, that’s where all the people around us, have these differences.

Hannah Diviney: I know you’ve just finished a new book.

Tara Moss: I have, book number 14.

Hannah Diviney: I saw that a couple of weeks ago. And oh my goodness, I can’t believe you’ve written 14 books!

Tara Moss: Where does the time go? Where does the time go? And I sort of disappeared for a while to finish that book, and I was really happy this year, in 2021, to be recognized as a Global Change Maker by Conscious Being Magazine. You know, disabled people writing on disabilities, and just to have that recognition in that small way was really important to me, to know that I have support that we are working together, and that I’m not getting it wrong. Because none of us, none of us are perfect, and I’m doing the best I can in terms of advocacy. And you know, I don’t know it all and every little bit that that we do, I think helps. It was nice just to get that. I want to say it’s like a little bit of acceptance there, and it’s a nice feeling, nice feeling and to be in that company. Oh my God! Wonderful!

Hannah Diviney: I think that no one has a roadmap to kind of how to do any of this stuff, so we’re all just figuring it out as we go. I think we’re slowly getting there, but we have a long, long way to go.

Tara Moss: This is the time, Hannah. We’ve got this, we’ve got this. We’re going to push this forward. We’re going to propel this forward.

Hannah Diviney: Sometimes it can feel like pushing a boulder up a hill, but we can do this.

Tara Moss: Yeah, it’s not Sisyphus. We won’t have to push the same boulder over and over again, that is too painful to even think about – I don’t think I can push boulders these days, if I ever could. But yeah, I think there is some movement happening. And in terms of social justice, disability feels like it’s really well and truly overdue as a focus for people just to think about, and unpick some of their preconceived notions and biases about, because it’s so relevant, and part of our community at every level, at all ages, and all parts of the world. It’s part of the world. It has to be normalised, because disability is a normal part of human life and human existence, and always has been.

Hannah Diviney: Yes, and it’s not a weakness, either.

Tara Moss: No!

Hannah Diviney: That’s another thing we kind of got to do away with as well.

Tara Moss: Yeah. In fact, some of the strongest people I know, are people who have disabilities of various types. In fact, it’s sort of self-evidently true that they’re really frickin’ strong.

Hannah Diviney: You kind of have to be to get through it because otherwise you’re like, Well, this isn’t going to work. But I guess one of the hopes of our community during the pandemic, as perverse as it might sound, is that hopefully with the impacts of COVID, people might start to take disability and chronic illness more seriously.

Tara Moss: I’d love that to be the case. I’d love that to be the. It’s hard to talk silver linings, but that could be the wakeup call that’s needed, to have the general public and governments, and businesses and powers that be, acknowledge that health matters a lot, and health comes in a lot of varieties. And we need to acknowledge disability and chronic illness as a thing that’s in our communities, a thing we can experience at any time and something that needs to be, you know, prioritised in ways that it hasn’t been before.

Hannah Diviney: Mm-Hmm. And I think anything that we can do to make disability a less scary experience, a less confusing experience, or less kind of isolating one, no matter how we do that, that’s all going to be for the greater benefit of everybody.

Tara Moss: So beautifully put, Hannah. So beautifully put. Thank you. And I don’t think we could end on a better note than that. That’s just spot on. You know, let’s try to make the road smoother for people ahead, you know? Yeah.

Hannah Diviney: Yeah, definitely.

Tara Moss: Well, thank you so much for the chat Hannah, it was awesome.

Hannah Diviney: Yeah, it’s been so lovely to talk to you.

Andy Mclean: That was Tara Moss in conversation with Hannah Diviney.

Ben McAlary: Yeah, how good was that discussion? We loved it so much that we’ve invited Tara back for a future episode to discuss advocacy in greater depth with Bronya Metherall, who is the General Manager of Influence and Social Impact at Cerebral Palsy Alliance.

Andy McLean: Yeah. So to make sure you don’t miss that, subscribe now to Cerebral Conversations on your favourite podcast platform. And while you there, feel free to leave us a rating or review.

Ben McAlary: To learn more about today’s episode, head over to the show notes at cerebralpalsy.org.au and to join the conversation and follow us on social media.

Andy McLean: And that’s all from us for this episode. So until next time, thanks very much for listening and goodbye for now.

The music for this podcast was kindly supplied by Ocean Alley. Check out the band’s music on Bandcamp or visit Ocean Alley

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