LISA: Are you sick of the same old disability stereotypes? We were too so We did something about it. Welcome to ‘That was Unexpected’, the Disability Lifestyle Podcast for everyone. Brought to you by Youngcare and hosted by me, Lisa Cox.

Join our amazing guests as we delve into topics that don’t often hit the headlines. So let’s do this! Prepare for the unexpected. If you’re low vision like me or have other accessibility requirements, check out our shownotes.

Before we get started, we’d like to acknowledge the traditional owners of land on which we record. We pay our respects to the elders past, present and emerging.

NARRATOR: Welcome to episode one of “That Was Unexpected”. That Was Unexpected is a podcast that will challenge your perceptions around disability.

Each month, our host, Lisa Cox, will be speaking with advocates, experts and friends about the experiences of people living with disabilities, with the purpose of normalising disability and celebrating inclusion.

Why do we think Lisa is the perfect host for this podcast? Well, apart from being a writer, TEDx speaker and internationally awarded thought leader, Lisa is a very proud member of the disability community. She acquired multiple visible and invisible disabilities nearly years ago. And while she couldn’t change what had happened to her, Lisa could and is using her voice to help change social attitudes towards disability.

As a Youngcare Ambassador Lisa wanted to learn more about the origin of the organisation that is leading the way in creating an inclusive Australia. Youngcare was born out of a significant need, but really its success has been due to the power of community and friendship.

In 2005, four mates vowed to change the gap in care provision for young people with high care needs when at the age of 33, the late Shevaune Conry, who had multiple sclerosis, ended up living in aged care. It was the only place that could provide for her care needs. So husband at the time, Dave rallied his mates and they created Youngcare with the purpose of creating age appropriate homes for young people with disabilities.

Dave and Lisa had a chat in the studio and here’s what they had to say.

DAVE: It was new to me, the whole disability space, but it was through my first wife, Shevaune, who unfortunately through her MS, became quite debilitated. And over time we sort of learned to deal with disabilities as they came.

It was a it was a process that sort of came on slowly and then more quickly and then more debilitating as we went on. So that learning disability was on the run for us and subsequently became quite a terrifying experience really, given what we didn’t know. And what subsequently became apparent was her future.

So that was really the driver behind Youngcare in the end and subsequently her disabilities and in her illness more so meant that she needed care outside the home. She wasn’t available, and the concept of Youngcare came about.

LISA: That really, really is fantastic, what you’ve achieved. When you first told your mates about what was happening to Shevaune, what was their reaction? What did they do and say?

DAVE: They saw it as I saw it. You know, they were great friends with her and could see what the illness was doing to her. So it wasn’t news to them really. But I guess the challenges that she shared privately, you know, became apparent to them. And they were saddened, as I was by Shevaune’s situation.

But also, you know, I think all of us, our friends and our family were quite motivated by the bravery that she showed in a very stoic nature she had and in dealing with a very challenging situation. And but yeah, they they could see what we all saw. And that was a very challenging situation for her, particularly and subsequently for all of us.

LISA: And I suppose everybody has such a different situation when they acquire a disability particularly and tell people about their disability or a chronic illness. And I had a different situation and lots of people I’ve spoken to do.

What would be your advice for people who do either acquire a a chronic illness or a disability in terms of supporting people?

DAVE: Look, I don’t know. Everyone’s circumstances are different, but we were I guess on reflection, we were very fortunate to have a great support network of family and friends.

And and I guess if whatever I can give is to, you know, really share your situation with them, what you’re going through, what help you need. I think that’s such a great way to alleviate some of the stresses and need to really sort of collectively sort of support the person who needs support and whether it’s in particular on the emotional side of it, it’s very important to share your situation with family and friends and rather than sort of bottle up, which probably I did a lot of the time. But but eventually, you know, you feel the need to sort of share and that’s such a great relief when you’ve got that support there because they all want to help.

LISA: Yeah, I think sharing is probably really important from my point of view as well. My involvement with Youngcare came from a now famous Minutes story that aired over ten years ago, and that’s where Youngcare really got known. Suddenly people found out about Youngcare because previously not a lot of people knew that this problem, quote on quote existed and myself included.

And I had been previously over a year in hospital. And because of the nature of my my injuries, my disabilities, I spent so much time in, I suppose, with people old enough to be my grandparents that included stroke and hip replacement and things like that. And they were lovely, lovely people but we had nothing in common. And so talking to them about war stories and their grandchildren, I was just like, yeah, no, sorry.

I came out of hospital and was watching Minutes one night and was just glued to the screen and watching this story with tears rolling down my face and remember watching it thinking, holy shit!

How grateful firstly to have got out of hospital and have sort of been getting on with my life. But secondly, how terrible is it that there’s still thousands and thousands of young people in all people’s homes who couldn’t get away from the situation that I was once in.

So at the time I had no job. I was fortunate enough to be back home with mum and dad, but I didn’t have any money because I had no job, but I did have my writing skills. So I couldn’t donate a lot of money to Youngcare so I donated my time. I volunteered my time. I went to the office and said, “right, here I am, what can I do?” And that’s what I started doing. I just volunteered my time as a writer. And that’s that’s how I started working with Youngcare and become involved with the organisation. And it’s been a long, long journey with Youngcare.

And that’s really how I got involved with this organisation all those years ago and how I came to know the founders and yourself and why I’m so incredibly grateful that you guys did the work that you did all those years ago and is still doing the work that you are doing today. Because I just think it’s magnificent.

There are so many young people in aged care who shouldn’t be there and if I was in an aged care facility, it bloody sucks to be surrounded by lovely old people, but they don’t know what it’s like. It’s absolutely horrific.

The stats that are out there for young people who are going into aged care and don’t have an alternative. So thank you from the bottom of my heart for everything that you and the guys, the founders did back in the day, back at Sinnamon Park when I was there. I remember the opening and just being so, so grateful.

So thank you again and thank you so much for being on the very first episode of our podcast.

DAVE: No problems at all. And, and I appreciate your kind words. And look, it’s, it’s a long time ago now and yeah, what we did, we couldn’t have done without the support of so many.

I think that’s the important thing is that the organisation has gone on and and it was designed to sort of go on really. once we realized there was a big need and to do that, you really need the support of so many whether it’s, you know, in the community, whether it’s the business community, whether it’s media, government, you know, everyone’s part of that community.

And I think, you know, to to solve a big problem, you need, you know, everyone to sort of provide or to play a part. And I think that’s what Youngcare has really done, is to provide a vehicle for people to be involved in and to play their part in the solution. And that solution doesn’t happen overnight and can’t happen overnight. But it really is setting the standards for what a solution can look like. And I think that’s what we’re most proud of – is starting an organisation that others have taken on to really be there for people who need it.

LISA: It’s a really great community you guys have got here. And I encourage everyone to jump on the website and have a look at what Youngcare are doing because it is a fantastic community for young Australians and other people who do want that support in the home or other places.

So, thanks again, David.

DAVE: My pleasure.

NARRATOR: Fast forward years and Youngcare is still paving the way in creating inclusive communities. The organization builds age appropriate, quality homes for people with disabilities, provides grants for vital equipment and life changing home modifications, or to transition people with disabilities out of institutions and back into the community where they belong. And the Youngcare Connect team provide free information and advice to families navigating the very complicated disability sector.

Lisa had a wonderful conversation with the CEO, Greg Johnson, and here’s what they chatted about.

GREG: Yeah, I guess for a long time we’ve really focused on getting young people out of aged care into Youngcare homes or helping them stay in their own homes. I think more and more these days we’ve got to get these young people out, out into communities, out into bars, galleries, theaters, restaurants, sporting venues, whatever.

There’s been such an investment made to create wonderful homes. But that’s just the first part. You know, to give people choice, dignity and control, they should have also the ability to get out. And that brings a whole raft of issues with it. But it’s really important that we don’t just want people just staying inside these beautiful homes. We want them out in their communities and meeting people and doing things that we all take for granted.

LISA: Love that. Absolutely love that. There’s stereotypes that we all we all sit at home in our pyjamas and don’t leave the house. But no, we love we love going to concerts and all those other things. All the things that non-disabled people do as well.

So what sort of things are Youngcare residents and other people… What sort of things do you try and get people out to do?

GREG: Yeah, well, a recent example is this might sound odd, but we were on the sponsors of the BIGSOUND Music Conference here in Queensland, which is the biggest music conference in the southern hemisphere. That’s a classic where we’ve had some of our residents and grant recipients attend music concerts. Now, easier said than done sometimes, but you know, when we have those tickets available, they flock to them. It’s wonderful.

The other big one, I guess, is even just sports events or sometimes just shopping. Yeah, we work really hard with a range of people. We’re just getting people at these communities so they can go shopping or whatever it might be. So yeah, BIGSOUND was a great one. We had some wonderful residents turn up and enjoy wonderful music concerts in Brisbane.

LISA: As a CEO, as a leader, I think it’s really, really awesome. I’m I was banging on about this. As leaders, you need to step up I suppose, for things like accessibility, when the other people, when other people out and you get those sorts of things.

So what advice would you offer to whether it’s a venue organiser or a HR manager or somebody like that for how they can be accessible or things like that?

GREG: Yeah, that’s a really good point, Lisa. I think for us it’s from listening to those with lived experience. Once you have that and people can tell you the challenges they face on a day to day basis, then we can be the voice for them and quite literally the voice for them. So, so for venue operators and employers, listen to that lived experience first, whether it’s inside your own organisation or if you don’t have people with disability in the organisation, come talk to us or other providers and get that lived experience advice first. And we’re doing that now, some organisations, but a long way to go. But I think don’t assume.

We were at a venue last week where they provided the access for people to get in, but when people would go to the bar to order a drink, of course if they’re in a chair, they can’t see above the bar. Yeah. So it’s it’s not just getting into the venue as an example. It’s a raft of other issues. It’s not just having accessible bathrooms. It’s, you know, it’s where are the bathrooms? And there’s a million things.

My only advice would be, listen to lived experience first and never make any assumptions and then retest constantly all the way. Because you continue to find out small things that can be done better.

LISA: Such good advice, lived experience first and if you can’t get lived experience get in a consultant. Get in that that lived experience. And it’s not just lived experience from one one person. One person can’t speak for everybody.

GREG: Exactly.

LISA: Myself or, you know, one disabled person doesn’t speak for the entire community. That’s really, really solid advice. So, Greg, can you give us an idea of how many young people are in aged care at the moment?

GREG: Yeah, the number is coming down, Lisa. Only a few years ago it was in the thousands. It’s it’s much less than that now. It’s just under . But that’s the iceberg thing. It’s the iceberg principle.

We can see those two or three thousand young people, we know where they are, so to speak. But what we have no idea of in Australia is how many young people with severe disabilities are living at home today with their aging parents. Now, these are aging parents. These might be 60,  70, 80 year olds in homes that aren’t equipped that I have hoists, they don’t have hydro, they don’t have ramps, they don’t have rails. So that is a big problem.

Just on a quantum list, I would suggest, is well over 20,000, of these in Australia today, and that’s inappropriate accommodation as well. The parents still love them, but it’s inappropriate accommodation. It can’t service their needs. These are the young folk that rarely get out. These mum and dads don’t have a car to do so or don’t have ramps to allow it. So that’s the big thing that I’m really worried about.

And I do mean that, you know, the problem that Youngcare was built to solve: young people living in aged care. Gradually, we’re getting through that. But behind it there’s is second wave and it’s many, many more thousands.

And I had a chat with a fellow just a while ago that his words were, “I’m just a broken hip away from me living, in aged care with my daughter. And that’s a true story from the Gold Coast. And that rocked me because I thought, wow, this is this is a classic example of a Dad wanting to do the right thing, but his home isn’t inappropriate for her needs as he gets older. So, yeah, that’s the big one for me. And we’ll try and solve it as best we can. We’ll get the sector. I mean, not Youngcare. But it’s a big issue.

LISA Yeah, I’m aware of people in the sector. I have friends. Well you know, I won’t name who I know of. And it’s yeah, definitely a tidal wave. And when it hits, it’s not going to be pretty. So I, I know there’s a lot of work to be done before that.

GREG: Yeah. And it’s, a double whammy, Lisa. I mean let’s say the worst comes the worse and the parents, slash carer goes to aged care. You know, you could then have this young person that may well go with them.

Yeah. And that’s the stuff that we’ve got to get our mind around and start educating and encouraging these aging parents to allow their child to move to separate accommodation. Because some of their parents, particularly culturally, we know examples of particular part of Sydney where culturally if you have a disabled child you must look after them. And great intent with it, but when the parents turn and  , it won’t end well.

LISA: Yeah. That that’s the thing I suppose. When there’s the intersections with whether it’s cultural or for some for some other reason, when the intent is there as well, it puts a whole new layer of complexity around different things.

GREG: Yeah, absolutely. Okay, Lisa, I’ve got a question for you. So some time ago, Youngcare was looking at its ambassadors and we had a glaring hole in that we didn’t have an ambassador with lived experience and we tracked you down and we thought you would be a perfect fit for Youngcare for a raft of reasons. But why, why was it important for you to accept that ambassador role for Youngcare?

LISA: I have loved Youngcare, and I do for a long, long time. Well before your days. And I suppose I got involved with Youngcare back when it first began.

Back when the very first Sinnamon Park residence opened. I was there when it launched and when it was opening, all the dignitaries, all the very, very important politicians and the founders are all up there on stage and saying their thing. And I remember looking at all the people on stage and saying there were no people there with disabilities. This is wrong. There should be people there with disabilities, there’s no one there with lived experience.

And so, me foolishly, and I was completely sober, mind you! I wheeled around the back and past all the techies over the cords and grabbed a microphone and jumped on stage and said, “Everybody, I want to tell you how important Youngcare is”, and just burst into tears. And it was one of those ugly crying moments like Gwyneth Paltrow had at the Oscars or something.

And that was back then. And that’s going back over ten years ago. And I suppose even back then, it was really, really important to me that people with lived experiences had a voice at all of these sorts of events. And that’s still today. I continued on.

Yeah, I’ve always loved the sort of work that that Youngcare has done. Having getting young people out of aged care, because I’ve had had my own experiences in not aged care, but being in a situation where I was surrounded by people who were old enough to be my grandparents and they were lovely, but we had nothing in common.

GREG: Well, we’re so glad that you chose to be an ambassador and giving us the insights from your lived experience perspective. Also hosting today, supporting us at events. We’re blessed to have you. We really appreciate you at Youngcare.

LISA Well, thanks very much for being on the podcast today, Greg. It’s been fantastic speaking with you and thank you again for all of the fantastic work that you’re doing here at Youngcare.

GREG: Thank you, Lisa, and thank you for hosting us. Very excited to have you on board and much appreciated. Thank you.

LISA: Thanks for listening to “That Was Unexpected”. If you liked what you heard and you want to hear more, then hit subscribe wherever you get your fix.

Have any questions or topics that you’d love for us to tackle? Great! Email [email protected] We can’t wait to hear from you.

Check out our show notes for transcripts, video recordings and to find out more about our guests plus the useful resources they share. You can reach us on Facebook, Instagram, X and LinkedIn at @youngcareoz.

Let’s not forget an inclusive community is everyone’s business, so let’s keep working together to break down barriers and smash some stereotypes!

NARRATOR: In today’s episode, Lisa and our wonderful guests we’ll be talking about sex, intimacy and disability. Please note mature themes apply.

This episode is in two parts, so be sure to look out for ‘Part 2’ to get the full scoop on this fascinating topic.

LISA: Are you sick of the same old disability stereotypes? We were too so we did something about it. Welcome to ‘That Was Unexpected’ the disability lifestyle podcast for everyone.

Brought to you by Youngcare and hosted by me, Lisa Cox. Join our amazing guests as we delve into topics that don’t often hit the headlines. So, let’s do this!

Prepare for the unexpected! If you’re low vision like me or have other accessibility requirements, check out our show notes.

Before we get started, we’d like to acknowledge the traditional owners of land on which we record. We pay respects to the elders, past, present and emerging.

LISA: Hey! Hello everybody. Okay, I was super excited when the producers came to me with this topic because sex and disability is something that kind of well, it goes together like oil and water.

You don’t really hear much about it. It’s really not discussed. And when you do, unfortunately… and I don’t want to make fun of this, but it’s it’s…yeah, kind of not not really put together in a in a nice kind of way.

So I’m really excited to have two extremely, extremely experienced guests in their own individual ways on the podcast this morning. Todd And Dr. Marita if you could introduce yourselves please.

TODD: Hi, everyone. I’m Todd Winther. I’m a political consultant for Disability Services Consulting. But previously I was lucky enough to work for Youngcare and to live in Youngcare’s first building at Sinnamon Park and Youngcare is a really important place in my heart because they are the organisation that gave me my freedom. So I’m delighted to be with you today. Thank you Lisa.

LISA: Thanks very much Todd and Dr. Marita Heck, the beautiful Marita who is dressed in blue. Listeners can’t see her but she’s- she’s dress up for our podcast, which is just fantastic. Tell us a bit about yourself Dr. Marita.

MARITA: Hi, Lisa. Thank you for having me and for inviting me to the podcast together with Todd. I am actually a nurse, and I am a midwife, and I’m also working as a researcher in the sexual quality of life and disability space, and also as a clinician.

LISA: Excellent. Now… like I said before, sex and disability, don’t hear a lot about it. Todd why do you think that the two just don’t get a lot of air time? Why do you think we we just don’t hear about sex and disability unless it’s kind of, not… I don’t know-

TODD: So many reasons I could probably write an academic thesis on it.

LISA: Yeah I think you could too.

TODD: Basically there’s a stereotype in society that people with disabilities particularly people with physical disabilities like I have, I have cerebral palsy spastic quadriplegia and there’s an assumption that people with disabilities are asexual and that we don’t want to develop relationships of any kind.

But all humans require some sort of connection. and that’s what makes us human. And because people with disabilities are classified by a stereotype as subhuman or othered there’s a perception that people with disabilities don’t need that connection, or thrive on that connection, because we’re not human after all we are defined by our disability under the medical model.

We are defined by our impairments. We’re not defined by what we can contribute to the people we love or society at large, whether that being in an intimate context or not.

LISA: Yep, excellent answer. I couldn’t agree more. And speaking of writing PhD, or a thesis, or something. I believe Dr. Marita has done exactly that. Written a PhD about sexuality and disability.

MARITA: It was a part of it. So my PhD is actually divided into how society perceives disability and how this is actually fed back into media, and then one other topic is how a society perceives disability and sexuality, and how this is fed back to media. And then, you know, people; how we educate the broader community about that as well.

And Todd said it really well because what we also found out in research is actually one of the reasons why this is still a bit of a difficult topic is because people with a disability have been tucked away or we’re tucked away until, you know, until we had the medical advances to actually support people with a disability, to live a normal life.

You know, and that’s basically where we are just at the moment in the catch up, you know, what you actually say “Okay people with a disability are normal people who have normal, you know, normal friends, have normal relationships, have sex as well.” So it’s just I think society needs to catch up with that idea that.

LISA: Whaaat? People with disabilities have sex as well? No! That, honestly that… seems to blow some people’s tiny minds. But it is a real shame that that it is.

I know Todd, you do really interesting work in this space. Tell us about some of the work that you do. I’ve read your website. Tell us about some of the workshops that you do with people to educate them about sex, and sexuality, and all of those things.

TODD: Well, part of the work that I do at BSE is I run a workshop for service providers, because I co-run the workshop with an OT and a sexologist but also somebody who use to work for a service provider who also works at DSC. And what we try to do is we don’t necessarily talk about the ‘sexy part’ You know…Do we need to… Can we hire a sex worker under the NDIS? or, you know, how do we position a person with a disability?

It’s more about teaching people with disabilities protective behaviours, helping them ask the right questions, putting them in the right frame of mind so they can develop relationships of any kind because the opposite of relationships of any nature is isolation and the history of the disability movement up until right now is basically people with disabilities have been deliberately isolated, deliberately segregated. So it’s taken for granted that people with disabilities, as I said before, actually want relationships.

And because is the social model of disability says that disability is a lack of choice, that too extends to sexuality and disability. How do I explore my body when the b- when my body is the very thing that works against me? How do I have a safe and meaningful conversation for a provider that I trust? How can that provided develop trust in me? What conversations need to be had if the person with a disability is in a vulnerable situation and at the other end, what kind of touch do I like? What kind of touch don’t I like?

If you use a personal support worker, the touch that you get is very clinical. So how do I differentiate as a service provider, how I explain what is clinical touch and what is intimate touch. So there are different things like that. And because on the policy nerd, I get to explain all the all the guidelines and all the frameworks within the NDIS and then the sexologist OT that we co-present with gets to present all the exciting and interesting stuff.

LISA: That’s such important work that you’re doing Todd. Such important work, and I think you’ve worked with some OT’s before as well, doing some interesting work as well because this, this idea that people with disabilities have- are asexual like Todd said or have no sexual desires and zero interest in sex is all a load of B.S. Tell us a little bit about the work that you’ve done with OT’s and sex-sexologists, excuse my language.

MARITA: One of the works I’m doing in my clinical work is I work with people who have physical disabilities and want to self pleasure. And I have several clients with cerebral palsy as well. And then we look into how can they actually self pleasure.

And then we develop with an OT together devices that actually have, you know, clamp vibrators on top of it or male masturbation devices for males. And it’s a very interesting job because you basically have always to think outside the box. And that’s what I love about it. It’s just, you know, the challenge And then it’s also finding the right people because sometimes it can be very hard to find people who are open to work in this space.

And so just to, you know, find somebody who says, “Hey, no problem, give me that vibrator.” “lets see what can do with it.” And, you know, and then also, my clients are very, very grateful for that support as well.

LISA: Hey, who wouldn’t be grateful for a device like that. Everyone deserves an orgasm I say! I just think it’s important to talk about those sorts of things because hey if you didn’t- If you and I hadn’t had that conversation over coffee one day, I wouldn’t have known that those sorts of things were available for people with with those sorts of limb differences and things like that.

And there’s probably a lot of people in the community whether or not they have disabilities that know those sorts of services out there. And one of the objectives of this podcast is to broaden awareness, understanding of disabilities, whether or not you have one. And so I wanted to I wanted to have a chat about that and I know that when you had a conversation that day, you mentioned that you work with a lot of people who have acquired a disability and sometimes one of the barriers to learning about their sex and sexuality is the health care worker. And sometimes they don’t want to have that conversation. And could you explain a bit more about that, please?

MARITA: So yeah, I’m actually- my specialised field is people I work with people who sustained a spinal cord injury. This is just my interest field and I work with other with people with other disabilities as well. It’s just a field I’m researching in as well. And so we see often in the clinical and research space that health care workers feel just challenged to talk about that topic.

And unfortunately that is really damaging for the people who sustained the spinal cord injury or who have a disability in general. Because what I see often is that they are getting told “Forget about it.” “If you don’t use it, you lose it.” And it’s super damaging because sexual quality of life is a very basic human need we have. And often- and we know from research that actually from a recovery point of view, a person who sustained the spinal cord injury recovers much better if they know that point, you know that life domain is actually covered and they can come any time to a specialist to actually talk about it.

It’s just, you know, having that information, “Hey there is information out there.” There are health professionals out there. They can help you. And then basically to give that autonomy to that person themselves, then to reach out to these people and just, you know, give the basic information, or even what I actually go into universities and teach that as well in nursing and midwifery degrees. And what I usually say is “It’s okay if you can’t talk about it. It’s a personal decision.” However, I would like to invite you to actually say, “Okay, I it’s not my thing, but I do know somebody who is, you know, happy to talk about is who is specialised in this.” And then, you know, it’s just really to guide the patient or client in to that direction where they actually get the help and not, you know, just saying “Forget about it”. That’s just very disappointing. And yeah.

LISA: Yeah, absolutely. I think if there are any healthcare providers listening, if you don’t want to talk about it, that’s fine. But please find someone who can. Absolutely, pass them onto to someone who can recommend a colleague or something.

Now Todd, I believe- I do want to probe you a few questions. I know some people with disabilities don’t like a lot of questions, but I’m going to probe a few questions because one of the questions I get all the time as someone with a disability is, “Are you married?”

TODD: Yes.

LISA: Then when I say I am, you are? Yes.

TODD: Yes! “Oh did you meet your husband before or after your disabilities?” And then when I tell them I met my husband after the look of shock in their face is just… Just. Oh my God. The idea that someone married me with disabilities… “Wow. Good for you!” Oh my God!

TODD: It’s almost like your husband should apply for sainthood, isn’t it?

LISA: I know! What a good man.

TODD: Oh, yes.

LISA: Far out!

TODD: Tremendous, yeah.

LISA: Our producers just going to kill me here F—

TODD: Yeah!

LISA: You can bleep that out. So tell me your story Todd. Tell me all about your lovely wife and your marriage.

TODD: We’ve been married for five years together for eight. And because I got my disability from birth, yes, we met after I became disabled. [Laughing]

TODD: We met online and as a person with a physical disability who goes around in life with a neon sign literally above his head and says, “Hey everyone I’m disabled.”

Online dating was the first opportunity that I actually had. The first power of choice that I actually had of deciding when and how to disclose my disability. So I very readily chose online dating so I could have that authority in power to say, let’s have a conversation first, let’s try and figure out if you can actually get this, because not only did you have to work out, yes, I wanted to date this person, you also had to figure out that there was a second barrier.

And the second barrier was, yes, they might want to date you, but are they going to be cool with the challenges that I confront on a daily basis? You and I Lisa, are absolutely Ok most of the time with dealing with ableist behaviour and ableist language, but I can assure you that every time I go out in public with my wife, she gets far more upset on my behalf than I do, because, as you say, people have got skin in the game and the people that love us naturally care about us the most It’s when we talk about sexuality and intimacy

There’s two assumptions at play with my wife. There’s an assumption that she’s my family member, whether that be my sister or my cousin. And even shockingly, because she’s two years younger than me, she sometimes being referred to as my mother… and I tease her mercilessly about that. But there’s an assumption that she’s a family member or that she’s a support worker.

So what does that tell me as a person with a disability? I’m either paying her to be with me or she’s obliged to be with me as a family member. That tells me as a person with a disability that I’m not worthy of giving or receiving the love. So, if we extend that out to the entire disability community and we lionise our able bodied partners, yes, they’re fantastic partners and they support us because otherwise we wouldn’t be with them.

But they’re no saints for loving us. They love us because we are human. We share a connection. They don’t love us because we’re disabled and they’re actually people that have specific fetishes and if there was an X rated podcast, I’m sure you and I could share some very unique stories.

LISA: I think we could.

TODD: But the point is, again it relies upon human connection, it’s no different to say Marita who is not physically disabled, wants and needs emotional connection as well. It’s a human need and just because we have visible disabilities, it doesn’t mean that we shouldn’t be able to access it. And I’ll get off my wheelchair accessible soap box.

LISA: Oh no, please stay on it. I love everything you’re saying and I couldn’t agree more. Extremely well said Todd.

MARITA: Todd I have a question, if you don’t mind.

TODD: Sure.

MARITA: That’s a question many of my male clients who sustained a spinal cord injury actually asking me. It’s not so much the females who have that problem. It’s more the males where they say when they actually go on online dating and either that disclosed that they are wheelchair user at the beginning, then they don’t get matches, and if they then, you know, don’t disclose it and then say it later into the conversation and then these people get upset as well. And so for me, a question would be how would you recommend them to actually approach this?

TODD: Well, it’s different for everybody, but if you choose to disclose it later and they get upset, then they’re obviously not the right person for you because they’re going to get upset based on the disability anyway.

Whether you disclose that at the start or not. What I used to do is, you know, have a few vague, cheeky references to the disability to start with. So, “This guy’s a little bit different.” And if they’re curious, that’s sort of like a trigger to say, oh they’re inquisitive enough to ask questions and therefore they can meet me halfway on a relational or an intellectual level and then that starts the conversation that way.

So you’re not necessarily lying to them. You lead them down a pathway, the end point of which is, yes I’m disabled and we can have a conversation about this.

MARITA: Thank you so much that that’s really lovely to know because that’s one of the biggest hurdles I see in the work I’m actually doing.

LISA: Yeah.

MARITA: I also would like to add something with the healthcare workers in the research we are actually doing, my beautiful OT students, we actually developed a website It’s www.sexpositivecommunity.com and in this website we actually have a lot of information for people with a disability.

But also for health care workers because we know that it’s a big hurdle and where we actually just give an insight into a conversation how a conversation can go and where to find support. And this is just something we help, you know, the broader community people with lived experience, their carers, their families, and also health care professionals to actually start that conversation and just, you know, exchange their you know, thoughts and, you know, be very mindful as well when talking about that.

LISA: Ok, we’ll make sure we put that that link in the show notes as well. And Todd, are you aware of any what’s the word dating sites specifically for people with disability, or…

TODD: Yes, but there’s always a danger though and I’ve got to tread very carefully here that it can be exploited either for financial gain,

LISA: Okay.

TODD: or there are devotees who-

LISA: Ah, yep.

TODD: seek very specific interest, that can be safe but are not always guaranteed to be safe. So yes, there are particular websites with disability around dating. I actually am a bit of a hypocrite. ‘cause when I was dating I made the decision not to date people with physical disabilities and when I told other people with physical disabilities I was met with some, you know, incredulous looks saying, “Well, aren’t you a bit of a hypocrite?” Because if a girl came up to you and said, “I’m not going to date you because you are in a wheelchair, wouldn’t you feel upset? But I just explain basically that I’ve got enough physical challenges to deal with.

I want to have intimate relationships. Part of that involves physical connection. And if the two of us can’t connect physically, that’s a really important part of my relationship it’s part of my values. So if we couldn’t connect physically, that was sort of a no go area.

LISA: Yeah, that’s totally fair enough. Everyone’s got their own their own thing and there shouldn’t be… any judgment at all around what every individual decides.

TODD: ‘Physical connection’. I’m not using code words for ‘sex’. I’m using language that specifically talks about hugging, even touching, because every day I had people touching me on my body, whether it’s giving a shower or dressing me, or wiping my bottom when I go to the toilet.

So it’s really, really important to me that I had very specific touch that activates different parts of my body and that says to me, oh these people care about me. These people are more than a transactional relationship, whether that be a support worker, versus a client. I’m actually getting a connection to say this person loves me.

MARITA/LISA: Yeah. LISA: Absolutely, I think that’s really important for for people with disabilities who do rely on that, that transactional care, as you call it, to have another type of care that’s something very different… [No dialogue]

NARRATOR: Alright folks, as promised, that was ‘Part 1’ of our chat about all things sex, intimacy and disability. You can catch Lisa, Marita, and Todd continuing this awesome conversation in ‘Part 2’. Thanks for listening to ‘That Was Unexpected’.

If you liked what you heard and you want to hear more, then hit subscribe wherever you get your fix. Have any questions or topics that you’d love for us to tackle? Great! Email [email protected] We can’t wait to hear from you!

Check out our show notes for transcripts, video recordings and to find out more about our guests, plus the useful resources by share.

You can reach us on Facebook, Instagram, X, and LinkedIn at ‘@YoungcareOz’

Let’s not forget, an inclusive community is everyone’s business, so let’s keep working together to break down barriers, and smash some stereotypes.

NARRATOR: In today’s episode, Lisa and our wonderful guests will be talking about sex, intimacy and disability. Please note mature themes apply.

This episode is in two parts. So if you haven’t already, make sure you listen to part one before you jump into part two.

LISA: Are you sick of the same old disability stereotypes? We were too! So we did something about it. Welcome to ‘That Was Unexpected’. The disability lifestyle podcast for everyone.

Brought to you by Youngcare and hosted by me, Lisa Cox. Join our amazing guests as we delve into topics that don’t often hit the headlines. So let’s do this! Prepare for the unexpected.

If you’re low vision like me or have other accessibility requirements, check out our show notes.

Before we get started, we’d like to acknowledge the traditional owners of land on which we record. We pay our respects to the elders past, present and emerging.

NARRATOR: Welcome back to part two of ‘What!? People With Disabilities Have Sex?’. Once again, Lisa was joined in the studio by Todd Winther, self-proclaimed policy nerd, sex and wellbeing subject specialist, and disability advocate, and Dr. Marita Heck, nurse, midwife, researcher and clinician specialising in today’s topic.

Lisa and our guests were just filling us in on accessing NDIS funding for sexual wellbeing. Ready to dive back in?

LISA: Now, something that I know you both have a lot of experience with is NDIS funding. That is for sexual… What are the words I’m looking for? I wanna get the words right here.

TODD: Functional capacity is the major buzz word for NDIS.

LISA: Okay. Right. Either of you please, please go for it. If, if I or somebody did need help in that area, how would I go about funding? What area of my funding do I use?

TODD: The first thing to say is there’s no specific area that says either positive or negatively you can use this bucket of funding specifically for intimate or sexual preference.

One of the key challenges that we’ve had is if politicians want to point score, they can say “Oh people can use their NDIS for sex therapy”, which by the way, is totally valid. But what… What section five of the NDIS actually says is that people have autonomy over their body. They have the right to privacy and the reasonable, and necessary criteria of section thirty-four of the NDIS Act says that in order to get funding, you can prove that it is effective and beneficial both clinically, but also to achieve your goals in life.

And any NDIS goal that says things like developing relationships, social connection, further independence, things like that can be justified within the intimacy circle and can be not easily argued to get NDIS funding, but if you use the correct language and if you use the right resources, you can definitely get things like what Marita is working on. You can easily, clinically and otherwise justify those intimate supports.

And if we look beyond the NDIS there’s actually an international treaty where Australia is a signatory called the United Nations Convention on the Rights of People with Disabilities that actually says in black and white and gray you can have intimate relationships.

You have the right to privacy, you can participate in social and cultural and public life. So even if the NDIS didn’t have it covered in their legislation, you could actually say that the Australian Government is violating an international treaty. And if you were to say to a government official that of course not, then take us to the International Court of Law.

So even if in their infinite wisdom a politician was and say, “No, you can’t do this.” Well, actually, there’s a there’s a piece of legislation that’s above you the most internationally respected organisation in human rights, the United Nations, actually says that you can.

LISA: So Marita do you help any of your clients access NDIS funding for services?

MARITA: Yeah so, what I can recommend is to, and just to add to what Todd just said is if people with a disability have that actually in my plan that they actually want to experience sexual quality of life, then the NDIS actually funds health professionals like me who then come and do a formal assessment and look into their sexual quality of life goals, how they want to reach it, and then support like I do with that hand-brace I showed you, is then actually NDIS funded because I basically do that as a recommendation.

So I also go and say recommendation is for this person to in spinal cord injury for males to ejaculate or to, you know, have erectile, they usually have erectile dysfunctions is to actually have support with that. And with females serve pleasure or pleasure support or sexual quality of life with their partners, and we usually then can just justify that. And then NDIS usually does actually fund it.

So I haven’t had much problems with that with my clients. The only problems I encountered with was with sex workers. They wouldn’t fund that.

LISA: Right, so Todd tell us again about your dating experience and finding your wife.

TODD: Well, it took a while. I mean that whole online dating process took about six years before actually found my wife. I had been on a few dates, probably about, you know, five? And one particular woman I got fairly serious with. But It always encountered the same boundary, like I thought I was okay.

And then something happened and it made me rethink whether I was actually okay with it. And then basically I thought I was going to be on dating websites for like – years because finding somebody that connects with you on a level and then finding somebody who actually understands your disability is like finding a needle in a haystack.

But also to get to that extra level to actually connect with somebody and share the same values that you do and can actually tolerate my obsessive love of AFL football and my obsessive need to understand electoral boundaries and stuff like that. That’s the thing that makes Todd.

Todd is not only about finding a needle in a haystack, it’s finding a unicorn next to that needle in a haystack. It’s very, very rare. So I’m not going to pretend for one minute that online dating was easy as a person with a physical disability in actuality, it’s probably one of the most emotionally traumatic periods of my life because you’re constantly getting rejected based on a thing that you can’t control.

But if I was to provide one piece of advice, it’s and it’s corny, but it’s just persistence and people with disabilities, regardless of what disability they have, if you don’t need to teach them one thing, it’s definitely persistent stuff. One thing that we’ve always got sorted.

LISA: Yeah. Stubbornness and persistence. I think my husband will agree with me that it’s one thing I’ve got. It got sorted.

TODD: It’s how we survive.

LISA: Yeah. And Marita would you- I know you’ve got lots of clients with disabilities Is there one bit of advice or several bits of advice that you’d offer to people with disabilities looking to do some online dating or get out into the dating scene?

MARITA: I think what Todd said is really important, the persistence and it’s something, you know, online dating is, you know, not really fun. I mean, it can be fun, but, you know, if you are looking for a life partner, it’s always pretty challenging. And, you know, finding the right person.

But persistence and then also discernment. Is this person actually, you know, the person that I would like to be with? Because I like what you were saying before Todd where you’re saying there was somebody, but then they were not the perfect match. And then because you showed that discernment, you actually found your beautiful unicorn. I love how you describe that.

TODD: And it’s also important for to me to say that despite my disability, I am as cisgender white male. So if you’re, if you’re queer or transgendered or you know, have a different race, so not caucasian. That presents its own set of challenges as well. So yes, I’ve got a big challenge. But even in amongst that disability spectrum, I’m probably the most traditional representation of somebody with a physical disability.

LISA: Yeah. And when you are younger in your, in your teenage years, did you feel differently about having a disability or-

TODD: It’s only when I turned about that I actually came to terms with the fact that I completely despise my disability in all its forms because I was very fortunate to have two very strong willed, articulate, educated parents who always fought for me, believed in me as an individual and from them and from my own internalised ablism I sort of thought, well, at least I’m in a wheelchair and I can articulate my wants and needs and I’m not as bad off in somebody in a hospital bed that can only move their neck.

So in the scheme of things, I’m all right. But it wasn’t until actually having had a nervous breakdown in my late twenties that I actually had to deal with the fact that my disability is really shitty and it really pisses me off. So that was a challenge in the dating process as well, because I was undergoing that sort of ideological transformation, I had to present myself online to women that I found attractive and interesting, and I didn’t have that confidence within myself at that time. So that was an extra barrier to overcome.

LISA: Yeah, I think- I think it’s okay to be honest with that stuff that, you know, disabilities aren’t all…for all of us. Everyone’s got a different experience, but it’s okay to just have shitty days with disability and it’s not all sunshine and roses all the time.

LISA: for everybody

TODD: You would find this too Lisa that as a disabled person, we’re always taught to accommodate an able society, but nobody here who is able bodied is taught how to accommodate people with disability. We always have to go the extra mile. We always have to be half as disabled and twice as good. And there are different ways you can reckon with that.

But it’s an emotional journey and I mean, I obviously know a lot of people with disabilities of all kinds, but the one thing that we all have in common, even if we don’t recognize it yet, is we all struggle psychologically with reckoning with our disability and how we present that to the world.

LISA: Definitely, for sure. As much as we love, I’d love to spend all day talk about sex. There’s just a another really important element we need to chat about, which is things like STI’s which are, you know, not as sexy but still need to be talked about.

MARITA: And this is one of the things we see in the clinical work. And I personally see as well where people with a disability because they don’t have, you know, that experience and don’t go out as often. This is completely neglected to talk about STD’s.

And so for my clients, but in general, I’m really passionate about education about- around this topic for people with a disability. And it’s basically if people are interested, the sex-positive website has actually a tag where there is a really good explanation of what would be recommended. What tests to do, but also how to start that conversation. And also for people with a disability not to be pressured into anything they don’t want to.

LISA: Yeah

MARITA: So really be very discerning what you want to speak up and really have that conversation with a partner. And if they don’t want to have that conversation, just don’t even go there because it’s, you know, I often say to my clients, It’s just not something I would like them to have.

LISA: Gosh no. Absolutely. And yeah, knowing your rights, your sexual rights and I think it’s really important that we have have these conversations and it’s not going to be on the six p.m. headlines anytime soon but it’s conversations that that need to be had.

TODD: Yeah well the only thing that gets on that p.m. headlines or the Four Corners episodes are when something horrendous happens to us, you never see positive stories unless they’re a Paralympian about disability. Disability and having positive relationships in educating other people with disabilities. Because of course. Because we have those diminished rights, the media is reluctant to tell our stories and politically because people with disabilities don’t know what their rights are, and it’s in the best interests of the powerful to deny us our rights, because we’re powerful lobby group and we want to be. We don’t have access to our rights unless we ask them. And that’s the overall message of the Royal Commission, which is why the culture in Australia around disability needs to change.

LISA: That’s right. And Marita when you’re working with your clients and, you know, teaching them to learn their rights or just learn their boundaries I suppose in terms of sexual health and safety, what are some of those things that you teach them or tell them?

MARITA: So basically everything about consent is really important. You know to really know their yes and no, because a person with a disability, they know their body best and they know best what’s good for them. And so not to be pressured into anything they don’t want also then usual prevention, the tests they can do, finding out what, actually Todd said before, how to- which areas of their bodies feel, you know, pleasurable and also open communication with their partners.

And, you know, it’s just what we also see is just trying it out. And yeah, it’s basically it’s a holistic approach, because when I work with them, I also look at bladder management, bowel management, wound care and, you know, all that stuff that needs to be considered to have safe sex. So, you know, also being safe, hearing that sexual expression.

LISA: Yeah, that’s such an important service and just reminding the listeners again that is all NDIS, the sort of thing that is. And for a lot of people that’s, that’s just as important as other things that are NDIS covered as well.

And Todd, do you have any sort of tips for the listeners or or anything like that around, around consent and knowing their body from a sexual health perspective?

TODD: If you’re a parent that has a child with disability don’t shy away from the conversations that you would have with the child without a disability. Don’t forget, even if they communicate differently or have a cognitive deficit we all need to know what makes us safe.

What being uncomfortable feels like. When to know, when to trust our gut, when to know that we get excited. What it would feel like when we connect with that romantic partner. What give people hope about- I know a person with a disability who has an able bodied partner or I know a person with a disability is in a relationship with another person with a disability.

And I know a person with a disability who has a child because the thing that we forget as disability service providers is that people with disabilities don’t know what they don’t know and the way to share these stories is to teach them that you can be what you can see. But if you teach that, you have to open up people’s eyes.

LISA: That’s exactly right. And that’s what this podcast is trying to do, I suppose. Is to share those sorts of stories. And that’s that’s what we did I suppose touch on, touch on some stories, which wasn’t necessarily so, so great. And like I said before, the stories about consent and safety, you wanted sexier sex, but we did need to talk about it because it is important and something we did need to share because there are a lot of taboos across society, and I suppose a question for you both is… what you would like to see change? And that’s a that’s a big question.

And there’s there’s a lot of, you know from government policy we could put a lot of legislation in place to change it in pop culture, to all sorts of things. But if you could wave a magic wand so to speak. Open book, what would you like to see change if you could do anything tomorrow? What do you think would change the conversations around sex and disability to make it less taboo and less of a stigmatised thing that people are so ‘Eek. I don’t want to talk about it’.

MARITA: Well, being more exposed, you know, having more exposure to it, normalise it, have it- have that conversation at schools, you know, start really early. I can only talk about my experience from where I’m coming from because that, you know, discussion starts very early in life.

Obviously, child appropriate, age appropriate as well. But then, you know, we- I haven’t encountered any taboos around disability because that’s so normal that we say, yeah, people with a disability have sex too. So, you know, it’s it’s just, yeah, normalise it, have an open conversation.

And Todd was saying before what I really liked, really, you know, name the body parts, say vagina, say vulva, say penis and really, you know, have an open discussion. Don’t taboo, don’t have it as a taboo because it won’t help anybody. It’s just, you know, in an ideal world, we should talk about it and we don’t feel awkward about it.

It’s just a normal part of human being like eating. We talk about food like just normal or having a coffee, basically having a conversation like that. We don’t have to, you know, go in the nitty gritty stuff. But, you know, just having an open conversation about that, I think that would help a lot.

TODD: The Royal Commission report has come out recently and the thing that strikes me is that it’s twelve volume five and a half thousand page report that documents how we’ve been denied our basic rights in Australia.

And if I was to summarise the Royal Commission in three words, it’s basically dismantling the illusion of inclusion in Australia. So we’re not only talking about sexual or intimate rights or reproductive rights or any of the topics that we discussed today.

The reality is, up to this point, the government have failed to take our rights seriously and although we are a powerful voice and we’re the voice that started the NDIS. We’re the voice that got rid of the independent assessments. The fact that we have to live not as a second class citizen, not as a third class citizen, we are really a fourth class citizen as a group. We are a fourth class demographic and until society transitions away from the medical model that says our disability is the issue that must be dealt with.

Rather than looking inward and saying it’s actually society’s attitude about how they perceive our disability. In other words, it’s not our fault that we’re different. It’s your fault for perceiving us differently. So I could say that on a variety of topics, but specifically in regard to sexual health, reproductive rights, I mentioned the United Nations Convention on the Rights of People with Disability. That’s only years old.

So prior to when I turned, if I had a baby, my child can- my child could be taken away, no questions asked. I couldn’t be rescued in a time of disaster. I didn’t have political, legal or just rights. I got excluded from cultural and public activities.

So it’s not only sexual health, it’s about a whole shift in mindset to say, yes we are people with disabilities. And just because we’re in wheelchairs, or have cognitive difficulties, or are blind, or are deaf, or whatever disability that we have, it all comes back to that need for human connection.

Which is why I’m so passionate about this topic, because society looks at me and says, “We don’t want to look at you, live over there.” So I’m the one who says bring me to the table and that gets bloody exhausting. I’m sure you’re all the same way.

LISA: I’m ****ing exhausted.

TODD: So bring us to the table. Have the conversation. I’m not the problem. You are.

LISA: Yep. Incredibly well said Todd. Incredibly well said, both of you. So I’ve got one question for you before we finish today. And given the title of the podcast, ‘That Was Unexpected’. Todd I’ll start with you. What in your life, given everything that happened, is completely unexpected?

TODD: Given the nature of the topic, I can’t believe that people without disabilities believe that people with disabilities don’t want to have sex.

LISA: Neither can I!

TODD: We’re just horny as you are.

LISA: Love it! And Marita, I’ll ask you the same question. Given your experience in your professional background, working in the industries you do, what in your life is completely unexpected?

MARITA: Doing the job that I’m doing now. I would have never, ever, ever, ever. If you had asked me five years ago, I would have never thought I would do that work. And it’s very rewarding and I love to do this work. So yeah, people with the disability have sex and they like it. Yes.

LISA: So they go guys in answer to your question, in case you’re wondering, people with disabilities can and do have sex. You heard it here first!

Thank you both very much for being here and talking to us about sex, sexual health, all that fun stuff, and sharing your experiences with us, of course, and being vulnerable because some of those stories, Todd especially it probably wasn’t a whole lot of fun to go there.

TODD: I’m used to telling those stories. It’s an obligation that I have. I have the ability to tell stories, so it’s my obligation to pass them on. So I’m happy to do that.

LISA: Just compartmentalise and share. I know the feeling.

TODD: I’m always happy to give back to Youngcare because they’ve given me so much. If it wasn’t for Youngcare I wouldn’t have met my wife and it wouldn’t be having this conversation. So yeah, that’s what Youngcare has given us as a couple.

MARITA: That’s amazing.

LISA: That’s really cool.

LISA: Thanks for listening to ‘That Was Unexpected’. If you liked what you heard, and you want to hear more, then hit subscribe wherever you get your fix.

Have any questions or topics that you’d love for us to tackle? Great! Email [email protected] We can’t wait to hear from you!

Check it out show notes for transcripts, video recordings, and find out more about our guests plus the useful resources they share. You can reach us on Facebook, Instagram, X, and LinkedIn at @YoungcareOz

Let’s not forget an inclusive community is everyone’s business, so let’s keep working together to break down barriers and smash some stereotypes!

Narrator: Hi, and welcome to episode four of. That was unexpected. In today’s episode, Lisa and our guests delve deep into representation in the performing arts. Lisa was joined in the studio by actress and model Maya Dove, best known for her role in Tae Tae in the Land of Yaaas. And Victoria Wilson Division lead for Zebedee Talent, the world’s leading inclusive talent agency. Enjoy.

Lisa: Are you sick of the same old disability stereotypes? We were too, so we did something about it. Welcome to. That was unexpected. The Disability Lifestyle podcast for everyone brought to you by Youngcare and hosted by me, Lisa Cox. Join our amazing guests as we delve into topics that don’t often hit the headlines. So let’s do this. Prepare for the unexpected.

If you are low vision like me or have other accessibility requirements, check out our shownotes. Before we get started, we’d like to acknowledge the traditional owners of land on which we record. We pay our respects to the elders past, present and emerging.

Maya and Vic, it’s great to have you here today, so I could talk about representation all day, but I’m really excited that you are here to talk about it with me so, could you start by introducing yourselves and tell me about what you do.

Maya: Hi, my name is Maya Dove I am an actress model and caseworker based in Melbourne and I am proud dog Mum of a greyhound Maggie-June.

Lisa: Excellent. Yes, Dog Mum here as well.

Maya: All three of us are.

Victoria: Yeah, I’m Vic. I’m from Zebedee Talent. I’m the team lead here in Australia looking after all of wonderful Australian talent. But I also look after our talent overseas in the U.S. as well, and North America. So, yeah, that’s me.

Lisa: Excellent. So, Maya you and I first got into contact prior to you being in Tae Tae in the Land of Yaaas. Gosh, that’s a mouthful. I’m just going to call it Tae Tae.

For the listeners who haven’t heard about Tae Tae. Could you tell us a bit about it?

Maya: Yes, Tae Tae is a theatre show written by and produced by Shake and Stir theatre company that’s based here in Brisbane. It is about a young woman who is back in hospital waiting another spinal surgery and she’s feeling a bit unsure of what her future holds and what life has in store for her, because she’s experienced quite a significant amount of trauma and her sister comes to stay the night with her in hospital to cheer her up and her sister quickly sees that she’s not okay and she makes this kind of wish to the heavens or something like that about hoping that Tae can find out how good things can be. And then a magical fairy godmother who’s played by Maxie Shields, from RuPaul’s Drag Race, comes and takes them to the land of Yas, where they go through her past, her present, and they see their future. And by the end of it she feels happy and excited for what her future has in store.

Lisa: I love that because it rewrites that entire narrative that once you acquire a disability, your life, it’s going to be rubbish. And it really put a new spin on that and we don’t see enough of that in pop culture. I was cheering the whole way.

Maya: I’m so glad. I just really loved the fact that the audience got to see that Tae was just a young woman and all of the issues that she had were heightened by the fact that she had a disability. But throughout the show you just see Tae for who she is and the family that love her, which I think is just amazing.

Lisa: Yeah, right, exactly. So you mentioned that you’re an actor, and how did you get into that?

Maya: Well, I had just split up with my high school boyfriend and I was living out of home for the first time. And because when you are a young, disabled person, it’s really hard to find employment while you’re studying.

I was looking for ways to work and I really liked performing as a kid and I thought maybe this is something that I could do. So I just reached around to a few agencies based in Melbourne and then a year later after being signed, with a local agency, I reached out to Zebedee Talent and they weren’t in Australia yet.

But then when they were, Vic reached out to me and said, Would you like to come onboard? And then the rest is history.

Lisa: So exciting. So you and I both had different experiences of childhood because I didn’t grow up with the disability. And yeah, as a little blond kid, I saw myself everywhere and it was it was easy.

But as a child with a disability, what was it like growing up, not seeing yourself represented?

Maya: It was really hard. There was no pathways for disabled kids to get into the arts. I was a dramatic kid and I was a performer. A lot of the times it was just me singing about how much I loved my dog, but there was just no outlets.

My parents looked, but there was nothing really inclusive. Certainly nothing looked like Zebedee talent that do book disabled kids. So it’s just really nothing for me to build upon. It wasn’t until I became an adult the first time I think I saw someone like me on just on television was when I was in London and it was just a wheelchair racer on an ad for UK television.

And I thought that was just amazing because it was the first time I’d been authentically shown, and that’s five years ago. So yeah, yeah.

Lisa: Now let’s hope it’s changed a lot in five years, but I certainly can’t speak to experiences. But you know, 18 years ago, even when I had mine, there was that was not that you could be a Paralympian.

Maya: Yeah. Or you could be a patient in a hospital bed and that was, that was kind of not to say it’s perfect now, but there’s definitely it’s certainly come a long way. Well, even just the kids, because I have a spinal cord injury, a lot of the stories were just about adults that had been in a traumatic accident.

And I wasn’t in a traumatic accident. I’ve had my spinal cord injury since birth, but that kind of narrative was never shared. It was never shared what it was like to be a young kid in Australia growing up disabled. So I think that it’s really great that now those stories are finally being shared and if it was shared, it was always traumatic and sad and I’m not trying to minimize it.

You know, there would have been bad days. But yeah, the impact that it has now to also show families are amazing. I always think that disability impacts them just as much as a disabled person, but a lot of the time it’s the burden back in like back in those days.

Lisa: Yeah, but we’re not a burden.

So, Vic, we’re so excited that Zebedee is here!

I remember when I heard about them being over in the UK. I, like many other people, was like when are you coming to Australia? We need some talent here because I, as you know, I work with advertising agencies and like, okay, great, we want to, we want to represent people with disabilities, but where’s the talent? Where do we go for that?

So at least now when I’m speaking to businesses and agencies I can say and here is Zebedee. Yeah. So tell me about how you got started?

Vic: So yeah Zebedee was set up in 2017 by my sister in law Zoe and Laura, who obviously wanted to increase the representation of disabled talent, they set up in the UK.

And then I guess where I came in was 2019. Yeah, funny story. I’m actually Laura’s sister in-law and I, you know, I was really impressed, you know, with what they were doing in the UK. Yeah, I’m delighted for all the changes they were making. So I really wanted to come on board. So in 2019 I came on board to develop the US division and me being here based in Australia, a couple of years later or a year later, it just made sense that we launched over here.

I had people like Maya sitting in my inbox for like a year in a little folder of people, you know, to reach out to in Australia for when we did launch there. Yeah, it just made sense. There was that lack of representation here in Australia and it was, it was needed and we wanted to help create that pathway for talent.

So yeah, here we are, we’re thriving now in Australia. We’re doing really, really well and super proud of all of our talent and how far we’ve come.

Lisa: Yeah, you should be. It’s really, really wonderful. 20% of the population with a disability, but in advertising anyway, 1% and that’s, that’s not just bad for all of us with disabilities but also from a social perspective.

But I speak to businesses about it – it’s really shitty business, like you’re losing money. And that’s, I suppose, another way to look at it. Not the only reason you should do inclusive advertising and those sorts of things, but as Maya said, not, not seeing yourself on screen, not seeing yourself represented. It kind of sucks to put one way around it.

But what sort of brands see working with the moment?

Vic: We working with a bit of everything. To be honest, we put our talent forward for absolutely anything and everything. We want to give them as much opportunity as possible, and we do recommend that they take on board all the opportunities that come their way. You never know what doors that might open and who you’re going to impact, I suppose.

But yeah, we’re working with fashion brands, beauty tech brands, like you name it, a bit of everything, we do it. We’re working with on film sets, TV commercials, some TV series as well, some really exciting things coming out this year, things that have come out of theatre as well, delving into and yeah, the social side of things.

We help our talent build our social influencing platforms and yeah, reach out to brands that way as well. So yeah, bit of everything

Lisa: Okay and what sort of disabilities do all of your talent have?

Vic: Any kind of disability so visible and invisible disabilities, we have talent with visible differences as well, and we also work with trans and non-binary communities as well.

So basically all those kind of communities that were generally underrepresented or left out of the media, Yeah, we want everyone to kind of come on board and yeah, get, get everyone out there and seen.

Lisa: And has there been any…maybe not push back. But what sort of responses are you getting from brands with that? Because I want to talk about hesitation about including disability for so many reasons that are just rubbish.

But from your perspective, what sort of hesitation are you seeing from brands and businesses who don’t really necessarily want to find excuses not to do it?

Vic: I guess it’s just that fear factor and fear of getting it wrong or fear of using the wrong languages or that fear of tokenism as well. But I can just say just, just do it basically like, yeah, just go for it.

Like we’re here. We’ve got a great talent pool. Reach out to us. You know, reach out and ask for our packages. We’re also here for guidance as well. We’ve got awesome people on board like yourself, Lisa, who can offer advice and training and yeah, it is being done and it can be done and it can be done really successfully.

Every shoot that I’ve worked on or booked our talent on has been super successful. We’ve had great feedback from our talent and also our clients as well. And yeah, yeah, everyone’s been super successful and proud too. Yeah, it definitely can be done. I’d recommend. Yeah, just get out there, do it. Reach out to the right people. Yeah, yeah, definitely can be done.

Lisa: I think the, the fear of getting it wrong is, is something I hear a lot of and that’s, that’s understandable because often with advertising or any, any sort of production there’s a lot of money involved so you can’t just have a crack and yeah, might lose millions. So it’s not quite that simple, but fear of getting it wrong is not excuse for doing nothing, or at least asking people in the community how can we best go about this?

So it might not be perfect, but it’s damn damn… So I don’t know if I can sway there. Yeah, but it’s close to it. So.

So Maya tell us a bit more about your first gig.

Maya: My first gig was for Instagram. The company, Yeah. They were filming some short videos and stills in Melbourne. I think my face was on like the Zodiac filter at one point.

I only found out through a friend, but I remember being on the job and texting my mum after I was like, already to start shooting. I was like, I’ll do this the rest of my life. This is incredible. And my mum was like, I’d have a good day, but did not expect that. I was like, “Do you know the photographer? He shot Kendall Jenner last week!” and I was just, yeah, obsessed.

And after that, I’ve just been passionate about doing more.

Lisa: And I hope you do do more because we definitely want to see greater representation out there. And the fact is you love it so much, and the listeners can probably hear it. But the energy coming from you about absolutely loving, loving what you do.

So, Vic, I think I asked you this before, but what is … I suppose I’ll call them excuses. Call them what they are. You mentioned the fear factor, but are there any other more specific reasons?

Vic: Like you mentioned before, like that fear of expense as well? Maybe. But yeah.

And the fear, the fear of using the wrong language for being, you know, getting it wrong, being called out as tokenistic, which you don’t need to be if you want to be inclusive, just be inclusive and continue to be inclusive. As I mentioned as well. It does make sense for people to book disabled talent. You know, and when they are inclusive, it has been proven by research that it’s beneficial to their company and their own moneymaking.

I suppose, you know, it’s the right and ethical thing to do as well. It’s definitely going to impact the talent and the wider community. Yeah, Yeah. It, yeah, it just can be done and do it. Like I feel like there is no excuses and I think they do have excuses. Then as I said before, there is people to reach out, to get some advice, get some training and also look into your own business structure as well.

Like, you know, recruit internally people with disabilities as well and have a look at that internal structure as well as obviously in front of the camera. But yeah, just wholistically I suppose, you know?

Lisa: 100% representations about so much more than just putting one person in front of the camera and think – great job, done. Move on for the year. But it’s yeah like you said recruitment and behind the camera and so so much more.

Vic: Yeah. So I mean we’ve got obviously amazing talent and we’ve got super talent on our books, but we also represent some people like yourself who assist with training needs for businesses and we’re always available to reach out to for some help with that and how to go about their campaigns and how to do them properly. And we’ve got some awesome people behind the camera as well who want to get involved.

Lisa: So yeah, excellent. And what advice would you give to anyone who’s wanting to enter the industry? I’ll ask this question to both of you because you’ve got such different takes on it. But people who want to want to enter the industry with a disability, who are able to do what Maya is doing, how can they go about that?

Vic: Yeah, I’m I guess do a bit of research into the industry, reach out to people who are maybe in it already and see how they feel about it and how they going around it all and stuff go organize a couple of shoots, just make sure you feel confident and comfortable in front of the camera as well. And then it’s for you.

And just be responsive and, you know, want to invest in yourself and yeah, obviously take it further and but yeah, like I said, we’re always open to applications as well. We’re still growing in Australia and we want to grow the business, we need more talent. And so definitely like reach out to us, ask us questions, pop in an application.

Lisa: Yeah. Okay. What advice would you have for people to disability wanting to get into any sort of acting like the sort of work you do?

Maya: I think just do it, but make sure that you have a really strong sense of confidence in your skill because there will be jobs and you will be on jobs with people that probably haven’t worked with a disabled person before.

So I think just be confident in the fact that you can do it and that you’re skilled so that you’re allowing yourself to be showing up and being seen.

Lisa: Yeah. And we need more of that, more, more people with disabilities being seen, okay, Maya, I’d love to talk about the script for a moment because as I said, I was in the audience cheering the entire time.

Yeah. And for people who want to know the scripting of the show is it’s kind of special how that was done, but it included so many just really, really specific details and nuances that saw me laughing out loud. And a few other people in the audience laugh out loud. Those with disabilities and everyone around us was like, Honestly laughing.

And it’s because we got the joke and we got why that was funny. Or even though the rest of the audience thought “that is so not funny you can’t laugh.” And we were just in hysterics. Yeah. So can you tell us a bit more about the scripting?

Maya: Yeah. So the script was written by Nellie Lee. Which was based on her sister and her family.

So I think the reason it was so nuanced is because it was about her life and Nellie’s growing up knowing her sister has a disability. Yeah. So those experiences, you can’t think that out of your head. That’s only from someone that’s experienced firsthand. But they also were really mindful of the fact that it was an inclusive show and they wanted to make it really have a strong sense of disability.

When I said they had Mattie Little, who’s in from Brisbane and she was the disability consultant on the script progression, and then they also brought me up from Melbourne to meet the cast and everything like that and also give my input on the script. So it was very authentic and real and so the audience could see the vulnerability of the show.

Lisa: Yeah, it was definitely authentic and, and I see some that have tried to include disability and all credit to them for giving it a crack, maybe like, cringe cringe

Maya: And do you have a favorite scene?

Lisa: I probably for all the wrong reasons. I, I just loved love the one one that in the loungeroom in the mother is yeah running around going well make it all perfect for you and clean up And everything was just like, wow.

I could just relate to it I suppose.

Maya: But, Helen Cassidy, who played my mum, was a phenomenal actress. She was incredible. She really took me under her wing because it was my first time doing a professional show. Yeah. And they really made me feel comfortable, which is fantastic.

Lisa: The fairy godmother was hilarious.

Maya: Yeah. Maxie. Maxie has been doing it for 20 years, and she really looked out for me too. They all did. They all really looked out for me, which I think was fantastic because I am from Melbourne, So I lived here for two and a half months and work on it and do the show.

So I think the reason that I personally did such a good job at the in the role was because they just really made a comfortable environment.

Lisa: Yeah, I wouldn’t have known it was your first show.

Maya: Well, it felt like it at the start.

Lisa: You did a really good job.

Maya: Thank you.

Lisa: What would you like to see in the future in terms as representation on stage? On screen? I suppose it’s a question for both of you. Where would you like to see the industry going with regard to representation?

Maya: I think just more authentic stories like Tae Tae being shown out there. But I also think I would love for disabled actors to be just cast in roles that aren’t necessarily disability centred because disabled people, they’re not. The disability is a big part of who you are and a big part of who I am. But I’m not just a person with disability. I am a case worker, I’m a model, I’m a dog mum, I’m a sister, I’m a granddaughter. So there’s no reason why disabled people can’t play those kind of roles.

Lisa: Really, really well said. There’s so much more to us then our NDIS packages and wheelchairs and those sorts of things. And I think Tae Tae reflected that really, really well. And Vic, what would you like to say in terms of representation into the future?

Vic: Yeah, I think I’d just like to kind of echo what Maya said and yeah, just the casting. I should just be kind of incidental. You don’t need to make a role for a disabled person or yeah, like consider them for any particular role that you’ve got on. We submit our talent for absolutely any roles and we put them out there. And again, you’re not specific to disabled roles.

So I think yeah, just that incidental casting or yeah like yeah I guess yeah, that’s really key. I think the incidental inclusion. Yes. Yeah. Just consider the talent, you know, for who they are and they can play any role basically. Yeah. Yeah. And then yeah, if you need to ask questions and we, I mean we’re quite responsive, we work with our clients and talent together to ensure that everything on set is, you know, accessible if that’s needed or any accessible needs.

Basically, we have access writers that we have our talent complete and we forward them to our clients prior to any shoot taking place. So everybody’s aware of any needs and requirements on set and, and that everything runs smoothly and it does! So yeah it’s not always that specific disability role that is cast. We like to see our talent being cast in all roles across the board.

Lisa: So Maya you’re only one actress I suppose. And by that I mean there are a zillion people out there who have a disability and are also actors or actresses. But for anyone considering hiring disabled talent, what are your, I suppose, requirements on set?

Maya: I mean, I’m pretty I’m pretty chill. I backpacked through Europe so I can make anything work.

But you know I just make sure that there’s a disabled bathroom and it’s step free. That’s the main things.

Lisa: You backpacked through Europe? Tell me more about that.

Maya: Yeah. When I was 20, I went for seven weeks through Europe by myself.

Lisa: No. That is incredible. So what parts?

Maya: I went to Switzerland, Germany, Paris and the UK.

Lisa: That is so cool.

Maya: Yeah. So I think after doing that, there’s not really. Not much I can’t do. It was quite a very physical show and they were just worried that I was okay and because after doing that there’s really not much that I don’t do. That’s one of the hardest things I’ve ever done.

Lisa: So the physicality of Tae Tae was just really a breeze, I bet. It is a very, very physical show. You nailed it.

Maya: Thank you. I think I calculated that I did, like…there were five transfers per show and I did 25 shows. Think I did like 105 transfers for the whole season.

And that’s not including rehearsal. So yeah, I was very fit for the time I got back to Melbourne. Yeah, I have Guns of Steel, but I didn’t have any physio, so my, my hips definitely felt it. But yeah, yeah, it was incredible.

Lisa: So I want to know more about the script? I know it was written by, not written by sorry, but based on Tae’s life. But did any of it apart from a main character with the disability, any other specifics that you could really resonate with or that reflected your own personal experiences?

MayaYeah, I think just the whole entire show, it was really funny. When I went to the callback, they told me about the story because at first I thought I was just going in for a side little side role.

I didn’t think it was the lead.

Vic: Yeah I don’t know why. I feel like they didn’t really put that it was the main role. They kept that hush hush.

Maya: So I kind of went out there thinking, I’m just going to do this role. And it was kind of at a point where I wasn’t really sure. I wasn’t really confident in my future in the arts at that point. So I was kind of like, I’m going to do it and see what happens. Then I went up there and they told me about the story and I actually had the exact same surgery that Tae was waiting for. And so I had a spinal fusion when I was ten.

Yep. And I had three of them in four years and Tae was waiting for the second one. So just when I heard that, I was like, okay, this is a bit special because I mean, my spinal fusion was a big, big part of my life. It was probably one of the biggest things medically I’ve been through. So, I think just even that, I was just like, okay, well, I’ve got to I’ve got to give this everything because I mean, that experience as a kid, I can’t it’s kind of nice being now 24 and knowing that wasn’t for nothing.

But not even that, that’s something like a small part of it. But I think just the issues that were raised in this, the stories were told and to highlight disability awareness. I think just even the fact that my mum and my siblings could resonate, and I resonated just really shows that help across the board these experiences are because when you’re a disabled kid, it can feel very lonely and it just feels like you’re the only one.

So it’s kind of comforting for me to have tell that story and know that, okay, so let all that stuff that I kind of dealt with as a kid wasn’t I wasn’t the only one. It’s an across the board experience, which was very heartbreaking. It was heartbreaking when I was performing and I would see like a ten year old who had cerebral palsy in the front row.

And I’m telling the show and I’m like, That was probably the hardest bit that I’ve ever done. But then when you have like, you know, girls that are in high school and they are wheelchair users and they come up to me after the show and say, Thank you so much. I’ve never seen someone like me on stage. Yeah, that’s just I mean, I don’t care if I didn’t…

I mean, I do want another job, but like, for me, I remember in rehearsal someone saw the poster and I was looking down the street and I just got a glimpse of it when I was talking to Maxie, and it was this girl being pushed by her carer and she looked at the poster and I didn’t even meant to see that.

And I just remember texting my mum being like telling the story. And I said, if you know, if that experience, if that moment is all that I get from this shows and you know, that’s, that’s my driver, my job’s done.

Lisa: That’s awesome. I’ve got goosebumps. Now that’s, that’s really, really special.

When I acquired my disabilities, I wish that you had been able to talk to me and say, you know what? I’ve just backpacked around Europe or, I don’t know if you had yet, but I had done all these things because I only had this stereotype in my head that, yeah, life was over and it was it was going to be rubbish.

But to have met someone like you or see someone like you on a poster represented would have meant, would have meant so much.

Maya: Yeah, it’s, it’s quite funny like trying to tell people these things because I’m quite personal about things like that. Everyone gets so surprised of all the stuff that’s happened, but I mean, it’s just it’s just it’s the reason why I’m coming up to Brisbane for 24 hours.

My parents have always kind of they felt they didn’t have any kind of knowledge of disability. My mum was a nurse so she knew about it, but I don’t know any other family members. I have a physical disability so they kind of had the idea very early on that I was going to live a life that was a life of yes.

There was nothing they were going to stop me from doing if I was a three year old and I wanted to go in the McDonald’s playground, they would have my uncle come with me and carry me up and down and or if I wanted to backpacked through Europe, they would bite their tongue and say, Yeah, okay, how you want to do this?

How are you going to do it? And then call me every day. To make sure I hadn’t died. So I think there is, and it’s really a testament to my family and my siblings who, I mean. So if they came and enjoyed it, they’re very, they’re very critical.

Like you think I’m sassy you haven’t met my little sister, she’s the worst. I said, if they said that I did good, then I know that I did good. And I think even them coming up and watching Tae Tae, they loved it. The part where I was chasing Jonny, who played a school bully around the stage like that, brought back childhood trauma, you know?

They just really loved it because even siblings, it’s not really discussed the impact that having a disabled sibling has on the family dynamic. I mean, for me, I thought it was quite nice for them to see that, that their experiences of being shattered off to different relatives while I had surgery is not it’s not singular, it’s universal.

And defending a disabled sibling like they’ve defended me sometimes and all they’ve had to answer silly questions like your sister drops you to school, how does she do that? I think saying moments like that that we’re in, in Tae Tae sorry was special and that is exactly why we need the entire show to go around Australia I’m not ready to say goodbye to yet.

Yeah, more. Even the last show I was like, I feel like I’m doing the very first one. I am not ready, but yeah, my body was ready.

Vic: But it just reiterates how like much impact not only the talent but the wider community as well. Like you obviously had an amazing experience there and want it to be continued and it’s, you know, you hold it close to your heart.

Maya: Shak and Stir still never made me feel like either never not once even now, I was just one of the cast it was just great. Yeah. They definitely had to have lots of conversation on how to make the theatre accessible for me.

But I mean, that was never put on me, that was never discussed with me. It was never that stress was never something that I had to carry the burden of. Yeah, they just made it seem like it wasn’t a big deal, which is how it should be. It’s a big deal doing it. An inclusive show like Tae Tae. But the fact that I was there and I was performing, you just let it be a big deal. It should just be how it is. Yeah, you just get to be another actor or actress.

Lisa: Vic, from an international point of view, how do you find Australia’s faring compared to compared to other countries? Because I know in certain industries and things I’ve spoken about, Australia is maybe a decade time, but yeah, from the work that you do?

Vic: I think it’s definitely catching up.

From a Zebedee business point of view, the Australia side is accountable for about 15% of the business. So it’s definitely and that’s like worldwide, I mean we have talent throughout the whole UK, Europe and then throughout like the whole of Northern America as well. So I think yeah, we’re definitely doing really well over here at the moment.

It’s growing and we’re seeing that change and people are, yeah, reaching out to us directly. They want advice, they want to, you know, how to be inclusive. It’s about changing social attitudes. It doesn’t happen overnight and that’s years and years of shifting culture and seeing them out there so yeah that’s the best part.

I’m so excited to see our talent out and about. But going to the shops and I’ll stop and look.

Maya: I saw two Zebedee models in one day.

Vic: Yeah. And even just I think what I love about Zebedee is that it’s such a community.

Maya: At Melbourne Fashion Week, for example, I like to go because I just like to support all the other models.

I think everyone’s super supportive and even a few of the models came and watched the show and they were really proud, which I think is, I mean you don’t see that in other agencies. You don’t see people being genuinely happy for your success. Yeah. All the talent are generally happy for everyone.

Vic: Literally everyone’s cheering each other on. Everyone’s resharing.

Maya: When you do see someone killing it, it’s just, just, it’s amazing to see. It’s so nice.

Vic: Yeah. Yeah, for sure. That’s cool. And I think the more brands and businesses who do casting with disabled talent, they say it wasn’t as hard as we thought it was, it’s, it’s not nearly as complicated. It is awesome.

Lisa: So yes, representation shouldn’t just be something that happens around the Paralympics and I know statistically there’s a spike in representation around the Paralympics. And during that time everybody is calling you and contacting us. But disability is all year round because people with disabilities exist in the world all year round and need to be represented in the same way.

Vic: Exactly right. Yeah.

Lisa: Question for you both, since the podcast is called that was unexpected. We like to ask our guests what about them or the circumstances with disability or with the industry, that is unexpected?

Vic: Maybe from a work perspective, from people knowing me, from Zebedee and the talent and clients I work with is yeah, that I have spent a lot of time traveling Australia. I moved here 14 years ago from the UK and yes, I spent about nine years of that working in aviation, flying in the skies and working with a variety of people. Emergency procedures Instructor as well. Also running around with firefighting equipment, medical equipment on board an airplane and teaching that to, yeah, flight crew members. For a good period of time. It’s exciting.

Lisa: What about you Maya?

Maya: I thought something unexpected about me is I grew up in the country, so I live in the inner city suburbs of Melbourne, but I grew up in a small town called, Kinglake, which is in the mountains of Melbourne, and I grew up riding quad bikes and going horse riding and a yeah, so you probably wouldn’t look at it from my Instagram because I like to go out a lot.

But like my parents now, they live on nine acres, so you’d probably see me go there quite a bit and be there with my dogs and they’ve got four chickens and I’m trying to convince them to get a horse, but I’m the only one of my family who like horses, so I don’t think I’m going to win.

Lisa: So if brands, businesses, individual want to get in touch with you and make their content inclusive, which they should, how can they do that?

Vic: I recommend giving our website a visit initially. So w w w zebedee talent dot com. You’ll find our contact info there. But if you want to reach out to me directly it’s Vic at Zebedee talent dot com. Check out our talent on our website. Check out the work that we do and why we do it and email us for some more information on how to make your campaigns accessible.

And if you need advice, we’ve got some amazing consultants and creatives on the team as well. But yeah, reach out to us, ask about our packages and we can take it from there. We’ll support you throughout the whole process and guide you.

Lisa: That’s brilliant. And Maya? How can people get in touch with you?

Maya: You can look me upon at Maya Dove or reach out to Zebedee Talent If you want to book me for anything further.

Lisa: I want to see your face everywhere.

Maya: Yes, I would like that too, I want to be on billboards in a lot of movies and a lot of TV shows and more theatre.

Lisa: Yeah, it’s fantastic. Thank you both so much for being here and talking about one of my favourite topics, representation.

Vic: Thanks for inviting me and having us.

Lisa: Thanks for listening to that was unexpected. If you liked what you heard, and want to hear more, then hit subscribe wherever you get your fix. Have any questions or topics that you’d love for us to tackle? Great email podcast at young care dot com dot au, we can’t wait to hear from you. Check it out our show notes for transcripts, video recordings and to find out more about our guests, plus the useful resources they share.

You can reach us on Facebook, Instagram and LinkedIn at Youngcare Oz. Let’s not forget, an inclusive community is everyone’s business, so let’s keep working together to break down barriers and smash some stereotypes.

Narrator: Trigger warning. The following discussion contains sensitive topics related to eating disorders. Please proceed with caution and prioritize your mental well-being in this insightful two part episode. Lisa chats with Ryley Batt, Paralympian, and wheelchair rugby star, along with Natasha Price, elite athlete, and Gold Coast Para Sports Star of the year. Let’s jump into part one.

 

Lisa: Are you sick of the same old disability stereotypes? We were too, so we did something about it. Welcome to. That was unexpected. The Disability Lifestyle podcast for everyone brought to you by Youngcare and hosted by me, Lisa Cox. Join our amazing guests as we delve into topics that don’t often hit the headlines. So let’s do this. Prepare for the unexpected.

If you’re low vision like me, or have other accessibility requirements, check out our show notes. Before we get started, we’d like to acknowledge the traditional owners of land on which we record. We pay respects to the elders, past, present, and emerging.

 

Ryley and Tash, welcome to That was unexpected. Really good to have you both here.

 

Natasha: Thank you.

 

Ryley: Yeah. Thank you for looking forward to today.

 

Lisa: Yeah, it’s going to be fun. Health, fitness, all that. All that good stuff. Really looking forward to talking about it as well, because it’s been a huge part of my life for disability and with disabilities. And there’s this misconception that people with disabilities don’t don’t have any interest in sports and fitness unless they go into Paralympic sports.

 

Natasha: Absolutely.

 

Lisa: So we’ll get into that today. But firstly, can you tell me a bit about you both your disabilities, all those sorts of things?

 

Natasha: Ryley, you go first.

 

Ryley: Oh, I was going to say ladies first. All right.  I bore the audience by talking about myself. No, look, for the viewers at home. For me, I, was born with a limb deficiency. What’s a type of deformity, so when, mom and dad got ultrasounds of me in mom’s tummy, it showed that I got told that I was a perfectly healthy baby boy.

But when I entered the world, I was missing, both legs pretty high. High up and missing a few fingers in each hand. And so, it was a huge shock. A huge shock from my parents. My grandparents, my family in general. but I’m very, very thankful for my family. They they never wrapped me in cotton wool.

They accepted me for who I am. And they let me live, perfectly, I guess, in normal life, and treated me like a normal boy. So, yes, the disability has obviously had its, boundaries. And I’m sure we can talk about that today, but, yeah, my disability hasn’t stopped me doing much in life. So that’s me.

 

Lisa: That’s awesome. And Tash, not unlike or not unlike like me. And that you acquired with stability. Yes.

 

Natasha: So I am, my story is obviously completely different to Ryley’s. I was, I went to bed and woke up the next day blind in the right eye. I had absolutely no idea what was going on. Within a couple of weeks of that, I was completely blind in both eyes. Couldn’t even see the difference between night and day.

Then within a month, I was, paralysed from the waist down, and it took them a really, really long time to figure out what was going on with me. It turned out that I have a condition that is a little bit like multiple sclerosis. So it affects the spinal cord, but also the optic nerve, and it’s called neuro myelitis optica.

And at the time that I was diagnosed, I was told that I’d have five years to live. So, 16 years on, I’m still here and I’m, as you can guess from being on this podcast, Fighting Fit and doing really, really dwell. So, you know, I’ve spent time quadriplegic, completely paralysed from the waist down from the neck down.

It’s, the kind of disease that comes in peaks and troughs. So things can be very, very changeable for me. But, you know, the one thing I’ve learned on this journey is that things aren’t guaranteed. And you’ve got to make the most of every single thing that life throws at us. So, you know, using this stuff to my advantage, I guess.

 

Lisa: Yeah. I couldn’t agree with you more. I got to make them. Exactly. The proverbial hits the fan, I guess?

 

Natasha: Yes.

 

Lisa: Were you into fitness? I know you are a massive, power athlete now. But were you into all of that pre disability?

 

Natasha: Yes. Always. So sports always been part of my life. My dad was a professional football soccer player in the UK and so it’s just in my blood from the moment I was born, I was a, I was a sprinter junior sprinter, and, you know, absolutely loved it back then. And the thought of doing long distance stuff when I was younger used to absolutely kill me.

So when I became a marathon, as a wheelchair athlete, I think it was a big shock to everybody. you know, it’s funny how everything that’s happened to me with my health really wanted me to take on that challenge. So I still wanted to do something sporty and something, you know, truly incredible. But I really, really wanted that extra challenge of pushing 42km with my arms.

Some would say that’s totally batshit crazy, but there you go. It is.

 

Lisa: It is. Yeah, I’m totally in that bat shit crazy camp.

 

Natasha: Yes. Yeah, you’ve got to put those challenges out there and, you know, see what you can you can, you can truly do and I, I, you know, I took on that challenge, but so, yes, sport has always been something that I loved as a, as a teenager and a 20 something. I was a, I was a professional dancer.

So yeah, it’s just health and fitness is just part of my life. And it always has been.

 

Ryley: Love it.

 

Lisa: Yeah. You guys are very pushing boundaries in your own respective ways, and I didn’t cover it at the beginning. But can you tell me a little bit about all of your amazing accomplishments?

 

Natasha: You take this one first. And Riley.

 

Ryley: So I used to let the ladies first, but I’ll take it again. So, for me, yeah, I’m a I’ve been an Australian wheelchair rugby player for 22 years and it’s been an amazing career. I’ve had so much fun doing it. I’ve been to five Paralympic Games. hopefully by the time this podcast comes out, we’ve qualified for our six Paralympic Games.

Obviously in Paris in 2024 this year. but it’s it’s it’s been tough. It has been it’s, you know, there’s been a lot of sacrifices that’s been, you know, a lot of blood, sweat and tears putting the training. But it’s been so worth it as well. Representing Australia for 22 years. but I’ve been able to captain Australian Rugby wheelchair team, being able to co-captain the whole Australian Paralympic team in the Tokyo 2020 Paralympic Games fly the flag at the opening ceremony. There are so many things that I’ve been able to change through sport and playing wheelchair rugby that I wouldn’t have achieved, if I didn’t push my boundaries. So, wheelchair rugby brought me a lot. One, two gold medals. we’ve been lucky enough to win a silver medal as well.

And, I’m hoping that we can potentially win a third gold medal this year. And I’d be happy to retire off that.

 

Lisa: Oh, yeah? What about you Tash?

 

Natasha: So, I’m. I’m still pretty much at the start of this journey. Haven’t quite, made it to the level Riley has with the Paralympics yet, but, you know, fingers crossed that that’s where I’m hoping to get to. I I’m I was blessed to be able to break the Queensland record in the 100 and 400m, last year.

So that’s a record that has stood for, oh, God, 27 years or something. So I was I was really, really quite proud of that achievement. And I’m last year, this year, this year. No no no last year, end of last year December went to the World Ability Sport Games and represented Thailand on the track there. came away with gold for the 200 and then bronze for the one and 400.

So I’m really proud of where I’m going in my career and how I was hoping to, qualify for the Paralympics this year. But I may have missed my opportunity due to Covid, but, well, we’ll see what happens is one more chance for me to get those qualifying times and, I’m hoping that it will happen, but if it doesn’t, I’ll just keep working towards it.

And next time it’ll happen eventually. I’m confident.

 

Lisa: So did you when did you decide to get into into sport and those sorts of things? I suppose as a child with disabilities, were you always wanting to do it from day dot, like, yeah, I’m off to the Paralympics. So it was something that you only really realized as a teenager or how did it work?

 

Ryley: for me, my dad was a huge, had a huge sporting background. He was a triathlete. He competed in any sport possible. He actually won. I’m from Port Macquarie, my hometown, Port Macquarie. And he actually won in the early 90s, the King of Sport in Port Macquarie. So he I did about 12 different sports and they got points and he won all that.

And he’s been very successful at you know, Olympic distance triathlons. And he’s just a competitive sportsman. So growing up with the disability, as I said, my parents didn’t wrap me in cotton wool. They tried to just let me do what I wanted to do. And I was always into motorbikes. My pop was in a motorbike, so my friends were into motorbikes.

I was racing around and motorbikes and quad bikes and whatnot and water skiing. But obviously you can’t do that every day. So dad would play, I remember in the lounge room you’d play like, you know, classic catches with me and a different, you know, sort of bowl sports and whatever it would be. And I absolutely loved that.

And I always wanted to beat him. You know, I’ve only got three fingers on one hand. I wasn’t very good at catching, but I would work so hard to try to beat him in a catching match or whatever it would be. But, growing up, I, I didn’t want to be a Paralympian. I didn’t want I didn’t actually want to, really do anything.

I guess in the disability world. I just wanted to do normal sports. So I remember, you know, at the school oval, I remember trying to play soccer. and this is primary school, and, you know, I try to go on the actual on the ground playing soccer, but. Oh, my God, I use my hands. I’m crawling around the ground.

Right. So every time it’s a handball  and look, the teachers have to talk to the kids and say, look, you just let him play with these hands. But then they got brutal and kicking me in the face, and what not, they got pretty brutal. So I went to goalie, and then I actually let my parents got me involved in a soccer club, and I used to go training goalie.

But the thing is then obviously on the ground, kids would just chip it over my head. So, that didn’t really work. And then obviously, you know, I tried to play cricket on the oval or footy or whatever, and I just tried to do that. And, you know, looking back now, I’m going, what were you doing, Ryley? Like, you were never, ever going to be able to compete.

But I wanted to be a normal boy.

 

Natasha: That’s about inclusion, though, isn’t it?

 

Ryley: Hundred percent? So, I used a skateboard to get around. In my early days, that was my mode of transport. I wouldn’t get in a wheelchair. prosthetic legs were very tough for me, so I used a skateboard to get around. But the skateboard actually became a bit of a sport for me. my dad was a builder, so he built half pipes and grinds and all these kind of things in our backyard, and it was like the cool spot to go.

So my friends would come over in the afternoon.

 

Natasha: Sounds like, so much fun.

 

Ryley: Hopefully dad built the ramps properly because all my mates hitting these ramps. Hopefully it wasn’t any nails hanging out and what not, but I sort of took on skateboarding as a bit of a sport then and loved it. And, but then there came a time where, my parents tried to get me in a wheelchair and, and I didn’t want to do it.

I thought wheelchairs were, for disabled people and now embarrassing. And I’m, you know, I’m this probably at the time nine  ten year old boy, I’m not. I’m not doing that. That’s embarrassing. And there came a time I was about 12, 13 years old, where this opportunity to play the sport of wheelchair rugby came up. And it was at school sport.

And I went to this, wheelchair rugby game, with my able body friends. And you could all jump from these wheelchair rugby chairs and all these my able friends jumped into or bashing into each other and having the time of their life. But I sat on the sidelines and went, no I’m not jumping that. That’s embarrassing and everyone will think I’m different.

A week later and, I was down, swimming down the beach, near Port Macquarie and threw my skateboard in the bushes when I went down to the beach and went for a swim and came back up and some bugger stole my skateboard. And that was my mode of transport. And something clicked that time.

And I went, you know what, Ryley? Let’s give this wheelchair a go. Let’s give it a go in life. So the next week when played wheelchair rugby with my able body friends and absolutely killed it. And for the first time in my life, I actually felt like I was on the same level playing field as, as people playing sport.

And it was just huge for me. So from there, my sport journey just absolutely blossomed. and, you know, representing New South Wales, Australia.

Natasha: You know, it’s not easy. And I think, as as much as we fight and advocate for the world to be more accessible, it’s it’s a fact of life that it just isn’t. And in order to be able to get around and navigate the world we live in, that that strength and those skills and that ability to be able to make our lives easier so that we can lead a normal life is is really, really important. So yeah.

 

Lisa: It’s so, so much a mental, a mental game as well that we have to do it.

 

Ryley: And not only that as well, we’re obviously talking about training here and fitness and what not. I think having a disability is not only about going to a gym or going to sport for the fitness side of things, it’s for the community as well. It’s for that mental side of things. It’s learning from each other, right? Like, I know in my support of wheelchair rugby, the amount of people I’ve learned with disabilities who have overcome huge, huge obstacles in life, like, you know, both of you have you learn from each other how to adapt, how to tackle things during the day.

Like, you know, I see, I see, someone come into our sport who’s new, who might struggle to transfer, you know, from a wheelchair to their car or to bed or whatever. And they speak to other people who have it, tips and tricks to it, and they’re doing it within no time. So it’s not only about the strength, it’s about a community.

It’s about finding others, like minded, being happy, being out there, being social. That’s one of the massive things to say, if even if you’re going to a gym or going to, let’s say, a social wheelchair basketball game, you don’t have to be the best out there. You don’t have to you don’t even have to, you know, you know, improve, you know, tenfold.

Go out there and just have a go, have some fun.

 

Natasha: It’s crazy, isn’t it? I think back to before I was involved with para sports and I didn’t know anybody else that was a wheelchair user. Like, really hadn’t even met anybody in my life who who was a wheelchair user. And I, I guess my own internalized ableism meant that I didn’t want to think of myself as being part of that community.

But when when I eventually embraced it and got involved, I learned so much in my my life changed in extraordinary ways just because of the people that I was surrounded myself with, because of the community that I’d become part of. And there’s so many opportunities and incredible things that have happened in my life, purely because I put myself in the situation where I was then surrounded by people that were doing, you know, great things, regardless of their disability.

And like my coach and friend Adam, he’s he’s taught me so much that I could not have learned from being surrounded by people without disabilities. And I feel very, very, very blessed for that. So it is about community. It’s all about community.

 

Ryley: Yeah, I think it’s about self-confidence as well. 100%. I know growing up for me with a disability, my teenage years were were dark and a lot of people didn’t see that because I saw such a positive, happy Riley. But I was struggling like I was struggling with even going to a gym with what people thought of me. And, I didn’t like that.

Because at the end, the day you’re in a wheelchair, you do look different. I understand that, you know that because you go to a gym, you might see, you know, once see someone in a wheelchair, but then you see 50 others who able bodied. So you you always, I guess that bit of a black sheep there.

But I thought people looked upon that in a bad way. But I had to learn that they not looking at you in a bad way. This is like, oh, they’re going to cheer. Hey, cool. You know what I mean? Like, they’re not always looking at you like like that. So, for me, like, I think for me, playing sport was huge.

To accept who I was and overcome who I was. And it took me a while. Like, even when I was 18, 19 years old, I was still worried about myself image. And you know what? Obviously, you’re looking at girlfriends at times and what girls are going to think of you. And, and just friends in general. When it was hard, it was dark and it took me until probably I was, let’s say, 20, 21 years old to sort of come out of my shell.

And I always look back now and if I didn’t get involved in some sort of sport or fitness or community, what would I be doing? Would I have come out of that shell? I don’t know. and I think I’m, I’m so excited that I’m coming out of this shell because, I used to wish I had legs every single day growing through my teenage years.

So why am I different? Why? Why, you know, why was I, you know, born like this? What have I done in rowing life? But now I look back and go, I don’t want legs. I’m happy with my disability.

 

Lisa: I do.

 

Ryley: Yeah, I’m happy with who I am. Yeah. There are challenges out there 100% this challenges. But then the diet, I’m different. I’ve lived an amazing life. I’ve learned so many things, and I am who I am because of what happened to me. So now I’m thankful.

 

Natasha: I tell you what I think is really, really interesting about what you just said is the the parallels between being a teenager, a young person who does have a disability and a young person who doesn’t have a disability. The the the challenges may be different. They may be, you know, completely different, but still have the same kind of thoughts and feelings and fears and, and worries about what people are looking at and, and worries about judgment and, and God knows what else.

Well, whilst I was a teenage teenager who didn’t have a disability, I had, I actually grew up with eating disorders. I had really bad anorexia. And those are because of the the worries that I had about, well, at the judgment other people were placing on me. So it’s, it’s it’s interesting to realize what people’s struggles are regardless of that, you know, disability or what they’ve got going on in their lives.

Like, we all have them, we all have them. And it’s it’s a level playing field. with regards to emotions and how we, how we treat ourselves as human beings sometimes, mean, we’ve got to stop giving ourselves such a hard time and worrying what everybody else thinks we do.

 

Lisa: That goes for everybody. Or you just go easy on yourself. Yeah. So in your experiences, both of you, what what misconceptions do you find whether it’s personally going to the gym or at the Paralympics? What misconceptions are there about fitness and health of people with disabilities? Oh, it’s it’s an A game or it’s what what do you think?.

 

Ryley: That’s a hard one. Yeah, that’s a hard one to answer on. Like hopefully I, I guess I’m answering this correctly, I guess. But this I think what you’re saying before is like you’re going to the gym being fit, and then everyone thinks you’re training for a Paralympic Games. Yeah. I think there’s a little bit of a misconception there where they think, I think people who, Paralympians or, or whatnot have sort of a bit of an easy road, I think just because they have a disability in their training, they can make the Paralympics.

It’s, it’s it might have been like those years and years ago. I’m not sure, but, in this day and age, it’s not easy. Like sitting here right now. Like you guys not might not see this in the podcast, but Natasha is like, I don’t know if this is a good thing. If she’s jacked, like she’s got some guns on her,

She’s looking fit as.

And she’s talking about struggling to qualify for a Paralympic Games. Okay. And she’s you know, that’s how hard it is. It’s you can’t just rock up and go to a gym once a day or just do it socially. You have to commit like an elite athlete for sure. I understand the pool for Paralympians is a lot smaller than, say, an Olympian.

You know, let’s say that you’re a Paralympic swimmer. You obviously the pool to get selected. You know, the athletes around you. It’s going to be a lot lower than an Olympic athlete because it’s more obviously there are more able body athletes out there in the world. But 20% of this world has a disability, so it’s not like we’re talking a handful. It’s still a lot of people.

So, I think there’s a big misconception in my opinion anyway, that people guy oh, you’re Paralympian. Yeah. Congratulations. You know, it’s like a feel good. Let’s give you a little clap. we worked bloody hard. Oh, yeah, we worked bloody hard. Cider and. Yeah. And now you’ve seen that firsthand. So, I think that’s probably one of the misconceptions.

What I think bugs me a little bit, in this world. But as we were talking about earlier in the show, that Australia is doing a really good job of it, though. and you know, where I think there’s other countries, I’m not going to name those countries around the world who just completely push the Paralympics just so I could not give a shit.

 

Lisa: Okay, so if you could both tell us, what do you reckon you most challenging times have been as power athletes? Because everyone assumes that it surely must be the fact that you’re in a wheelchair. But I know for me anyway, it’s the wheelchair. It’s got nothing to do with it. What have been your most challenging times as athletes?

 

Natasha: Oh God, I’ve got a couple of stories with this, but I think, most recently it’s been my, I guess, my health issues outside of, outside of my disability. So I, I recently had to have, a feeding tube removed, which had been there for 12.5 years. And I, I had some complications afterwards, and it was supposed to be a quick procedure with a quick healing outcome, and it didn’t quite happen like that.

And as a wheelchair racer, I’m in one of those three wheeled wheelchairs with a with a long fork out front. So I’m always in a bent over kind of position. And I found that, any time I was in the chair that the, the hole that had been left in my stomach was, was leaking stomach acid and, it was burning my skin and it was third degree burns.

It was really, really bad. Yeah. And I was I was having to train through that because I had done Sydney Marathon coming up in some big comps coming up. And it was hell it was hell and I think, and trying to find a place mentally where I could keep pushing through and continue training knowing that I had some, you know, I had my first and world major marathon coming up, obviously at Sydney.

And, knowing that, knowing that I had to keep going no matter what through that was, was really, really a struggle that it takes a huge amount of, I guess, discipline, to understand that, yes, there’s pain there and it probably isn’t a good thing, but it wasn’t something that was going to cause me long term damage as an injury would if I kept continuing on and doing my, my training and and competing in that that competition, as it turned out, the marathon was it was a nightmare.

And I had to pull out halfway through. So putting myself through that probably wasn’t the best thing in the end. But, I then had to have a subsequent surgery to fix the hole in my stomach because the amount I’m using my core every single day is it’s not, I guess, normal. you know, most people aren’t going out as wheelchair users to a training and elite level and, and compete at an elite level.

So I had to have surgery to fix a hole. And it’s it’s been a struggle. It’s it’s definitely been a challenging time to, continue on working as hard as I have done. And, knowing that I’ve had all these competitions coming up, that I’ve had to put on a bit of a backburner and not and not perform at my best because of, because of the things my body’s been through recently.

So it’s it’s definitely people think it’s so simple and straightforward and, and that’s, you know, as, as para athletes, we can we can keep just pushing ourselves in in the same way as perhaps we could pre disability or the same as our non-disabled counterparts can. But there’s, there’s always these outside factors that also dictate to us what we’re able to do on a daily basis that have to be considered as well.

So that I think yeah, it’s been it’s been an interesting ride, but I’m coming out the other side nicer, so that’s good,

 

Lisa: And you got a nice scar.

 

Natasha: Yes. It looks hilarious. It looks like I’ve got two belly buttons. like I often see I wear something high waisted and then I’ve got this weird belly button at the top of my abdomen, and it looks interesting, but hey, show it off and be proud of the scars.

They make me interesting and unique, I guess.

 

Lisa: What about you, Riley? What’s been one of your more challenging times? It’s apparently.

 

Ryley: Yeah, I’m probably going to sound a little bit ungrateful with my ones, but I think it’s just the the ups and downs of sport. you know, I like, you know, being able to succeed and and accomplish every goal I’ve set. and I’m very proud of that. But there’s, you know, everyone sees the happy times and the and the good times and everyone looks me goes.

You’re such a positive person, Riley. You’ve lived the life, as I say, inspirational. You hear that all the time. But it’s tough times. There is tough times. And, that’s where you’re always going to look after your mental health. And I’ve learned so much more about myself in the last probably two years, going through some of the toughest times in my life, you know, with some, some personal things going on, but with sport not knowing, you know, if you want to go on, you know, what else is there to achieve?

You’ve ticked everything. What’s after sport? Because it’s been part of my life since I was 12 years old. who am I? Who am I after? Sport? You know, with a lot of sports, you do get pushed to the side afterwards, you know? Thank you. Thanks for your time. Say you light up pretty much. And that that’s how I.

I’ll say a lot of Olympians. Paralympians do that. so it’s sort of trying to find who is Riley and trying to set up, I guess, some sort of something for when I finish sport eventually, you know, whether it be this year, whether it be in four years, whether in eight years, I don’t know when that’s going to be.

But that is tough. But I think the biggest challenge I’ve overcame of overcoming still is, is the race at one end. It’s my shoulder injury. I’ve had a lot of shoulder injuries. I’ve had a lot of injuries, but this one is just lingering and it’s, it’s like a roller coaster. Yeah. You’re at the top of a roller coaster thinking, oh, everything’s so good.

I’m back. I’m going to be out there to do some strength stuff again. I’m ready to lift my game to the next level again. And then you come crashing down. and it’s you have to be patient. you have to just take one day at a time and just and just trust the process. And I don’t like that I’m a person who.

I just want to get to that I want to get through that peak.

 

Natasha: Isn’t that something that’s, apparent in all athletes? We don’t know how to be patient. No.

 

Ryley: It’s it’s very painful that we have to be right. And we have to we we have to worry about our body. And I’m also worried about my body after I finish sport because and in the day, what we’re talking about before, I want to be independent, I want to be able to go out and do everything I want to achieve.

Like I’m a I’m a country boy. So I love going in the country and, and, you know, doing whatever. And to do that, I have to be crawling around the ground. I’m jumping up on tractors, you know, excavators, quad bikes, fixing stuff. I have to pay for the use my body. and if I’ve ruined it, well, then there’s none of that.

And then the more mental it’s going to go downhill. So it’s, at the moment, just overcoming this, this shoulder injury, probably acid or surgery, and just time that that’s also going to be a challenge as well, because being in a wheelchair, having shoulder and I have to get my elbow surgery at the same time, you know, that’s six, eight months recovery.

Yeah. That’s, that’s taking your independence away where most, you know, able bodied can. If I get shoulder surgery, they can walk around still. Yeah, they’ll whinge about it, but they can still walk around. Or for us, we’re pushing one handed. And where are they going? Around in circles or asking for help. And I pride myself on, that I have regained enough knowledge and independence in my life that I don’t ask for any help.

Yeah. There’s obviously things where help would help me out in life and make things easier, but I really don’t like asking for help, so I’m very nervous of those times, asking people for help. And I’m a person who says sorry every two seconds as well. So yeah, I’m sorry, I’m sorry. Can you help me? I’m sorry. Sorry I lost.

 

Natasha: Yeah that’s me too.

 

Lisa: Too much of that independence came from came from your father. That and I say that because you told me a story just before he came on air. Before about growing up with the disability and how he didn’t wrap you in cotton wool like you said before. But could you elaborate on that just a moment?

 

Ryley: Yeah, definitely. I’ve got some very good role models, and they’re my parents and my grandparents. So my, my grandparents aren’t with me, with us anymore. And that’s been quite tough for me. But, my, my pop and my dad especially were with two amazing people who, have helped me be the person I am today. And, I always remember this story.

I remember it clear as day. I can’t remember the age. I think I was about 3 or 4 years old and just finished, whatever we’re doing. Dad just finished work, and dad was a was a builder. And I remember being in his ute and we went down to the beach because I used to love swimming in the ocean with him.

And, it’s a hot day, so he had to pick me up on his shoulders so I didn’t crawl along the tarmac because that would have burnt off my bum. So, I crawled along as he picked me up and took me to the soft sand at the start of the beach, and he used to always take me down to the water so I could just go straight in the water.

This day he put me down in the top of the beach, in the soft sand. And as you do when you’re 3 or 4 years old, you chuck an absolute taint because you’re not getting your own way. So I chucked a tantrum and I remember it clear as day doing that. And dad, you know, my tantrum was dad, pick me up and take me down to the water.

And he said, no, you can get down on yourself, mate. And, he he shoved me along, you know, letting me chuck an absolute tantrum. Meanwhile, there’s people on, you know, this this beach in Port Macquarie. It’s a pretty, pretty populated beach. Looking at my dad going, you are an absolute asshole of a father, you poor disabled son.

Up and take him to the water. Anyway, he shoved me along and, I went go down to the water to swim by myself. And then he made me crawl back up the sand looking like a crumb cutlet. And, I think you look at times like that in life, and you look back and, you know, you know.

Would I do that? Absolutely. do I think that would have been tough for him to do? Absolutely. But it’s times like that where you you’re learning that you can push those boundaries. And he knew I could. He obviously saw me crawling around the house and doing bits and pieces. I used to get the job site with him and hang off all the, you know, scaffolding and whatever he was building, you know, like a monkey.

So he knew I could do it, but it’s just making me believe that I can do that. And I still do it to this day. I pull up at the beach and park my car, and I’d wheel as far as I can to the sand, and then I’ll put my sand and my sand away..

 

Natasha: That’s a lot of sand to put away.

 

Ryley: I put my wheelchair away in the bushes or wherever it be. And I’ll crawl down the beach. And yeah, it sucks when it’s low tide. Because you got to crawl a long way.

 

Natasha: Long way.

 

Ryley: And it sucks crawling back up because you got sand absolutely all over you. Yeah. And it’s…

 

Natasha: Getting into interesting places. Oh, yeah? Yeah.

 

Ryley: The car ride home. It’s it’s feel like you’ve got sandpaper in your crotch, but, I still love doing that, and would I. Yeah. If dad didn’t push me to, you know, to overcome these challenges, would. I’ll be doing it. Well, I don’t know. and that’s the same as my pop was talking about my dad and my pop.

My dad. My pop was a role model as well. And he bought me my first quad bike when I was, three and a half years old. And he told my parents, oh, I’ve bought this for Ryley. And they’re like, why the bloody hell have you bought him a quad bike? He’s not going to be able to ride it.

Sent me the brochure and everything, and I remember going to bed reading it with Mum and Dad every night, and I knew exactly how this quad bike worked. We went to our farm once on the Hawkesbury River in Sydney, and I jumped on it and they couldn’t get at me off it for three days. I used to ride around, wet my pants on it because I didn’t want to stop to go take a leak.

I used to drive past the house and say Vegemite sandwich or the cross cut off, and that stuck it in my mouth and I’d be chewing at it while I’ve got my hands on the handlebars. And, it’s, you know, it’s times like that way you’re just so thankful in life that you’ve had some great role models to push your boundaries.

Yeah.

 

Narrator: Thanks for listening to part one of unseen Victories beyond the Paralympic Glory. You can hear more from Riley and Natasha in Part two, dropping soon.

 

Lisa: Thanks for listening to. That was unexpected. If you liked what you heard and you want to hear more, then hit subscribe wherever you get your fix. Have any questions or topics that you’d love for us to tackle? Great! Email podcast at young Care.com that are you? We can’t wait to hear from you! Check it out! Charlotte for transcripts, video recordings, and to find out more about our guests, plus the useful resources they share.

 

Lisa: You can reach us on Facebook, Instagram x, and LinkedIn at Young Care Hours. Let’s not forget, an inclusive community is everyone’s business, so let’s keep working together to break down barriers and smash some stereotype apps.

Narrator 

Hi. Welcome to part two of Unseen Victories Beyond the Paralympic Glory. If you haven’t listened to part one yet, go back in and tune in. You won’t want to miss it. In part two, our guests, elite athletes Riley Batt and Natasha Price opened up about some of their personal struggles, including Natasha’s time spent in aged care at only 28 years old. 

 

Lisa 

Are you sick of the same old disability stereotypes? We were told that we did something about it. Welcome to. That was Unexpected, the disability Lifestyle podcast for everyone, brought to you by Youngcare and hosted by me, Lisa Cox. Join our amazing guests as we delve into topics that don’t often hit the headlines. So, let’s do this. Prepare for the unexpected. 

 

Lisa 

If you’re low vision like me, or have other accessibility requirements, check out our shownotes. Before we get started, we’d like to acknowledge the traditional owners of land on which we record. We pay respects to the elders past, present, and emerging.  

 

Lisa 

Tash, so you spent a bit of time in aged care? 

 

Natasha 

I did, I did so. Well, you know, as I spoke about earlier, my disability was something that just happened overnight. And, when I, when I was first sick, I was just in a little town in the UK, and they didn’t have a rehab hospital there. The only place that I could go to get used to life as a blind person, this was before I lost the use of my legs, was and aged care facility, and it was a facility with where the average age was 89 years old. And most of the patients had some form of dementia. So it was really tough. I was 28 at the time and, yeah, the facility itself wasn’t set up for somebody not only who was younger, but also somebody who was actually trying to get out and start figuring out this new life. 

 

There wasn’t the mental health support, you know, to help me to, I guess, accept my new situation. So that was something I had to figure out on my own. But there also wasn’t the support of, you know, getting used to using white cane, getting used to my new reality in the new ways in which my body was functioning. 

 

So it was definitely a tough time and something that I had to figure out on my own. I think that’s where mental resilience and the ability to use humour was, was probably my saving grace then, because I, I can manage to find something funny in almost every situation, mostly very inappropriately so. 

 

But, you know, you’ve I think I think people that have a good sense of humour and the ability to see not necessarily positives in everything, but the humour in everything, definitely get through these challenges a little bit easier. 

 

 

 

Ryley 

Yeah. I don’t know what you find, but, I, I like to joke around with people, especially people I just met about, like, you know, jokes with, you know, can’t even stand up for myself. 

 

Natasha 

Oh, you got. 

 

Ryley 

Yeah. The amount of people who you got, two different people. People would cringe and don’t know how to react, and people who laugh. 

 

Ryley 

Yeah, I know, I think it’s really cool when people, like, have a chuckle with it and have a, you know, they just all that was funny because there are people who can accept your disability more, in my opinion. And they’re not, I don’t know what the word would be, but they’re not sort of like they’re not worried about your disability as much. 

 

They they’re happy for you to have a joke about yourself. And it’s, it is so funny seeing those 2 types of people they either cringe or laugh when you pick on yourself. 

 

Natasha 

I quite interestingly and enjoy how far I can push the barrier and get people outside. I quite enjoy the cringe. I know it’s really mean of me, but I it’s I think sometimes you’ve got to and you’ve got to let people know that it’s okay to have a laugh and a joke because there’s a really big difference in my personal opinion, between having a sense of humour about something and being offensive and purposely being offensive. 

 

Natasha 

I think, that’s often a line that people forget about because we’re all too worried about being politically correct. But at the end of the day, people with disabilities are just the same as anyone else. We can have a laugh, we can have a joke, we can banter and I really love it when people join in with that banter with us, because you know that that’s life. Isn’t life about living and enjoying ourselves and having a good laugh. 

 

Lisa 

Absolutely. We can’t swear around you or say anything inappropriate. Like no please do. 

 

Ryley 

Yeah, I felt really bad for this manager of a hotel recently. I spent this day in the city in Brisbane and, went to this, nice, nice hotel, a bit of a boutique hotel, and went in there with, with my partner. And we got upgraded, and they upgraded our room, and I was like how nice of these guys upgrading our room went into the room and I was like, where’s the bed? Where’s the bathroom? I don’t know where it is. And then I found the spiral staircase up to the top level. I just talked to my partner. We had a laugh. 

 

This guy didn’t even realise I’m in a wheelchair. He served me the counter. I’m in a wheelchair, right and just didn’t click. So I’m very able. So I just picked my wheelchair up, and I just sort of bounded up the stairs, and, we got changed up there and had to shower. I then came back down to go out for the night, and he ran up to us. When we go past reception. I’m sorry, sorry, I’m sorry, sorry, I’m sorry. Sorry about what? Because I didn’t even register. I upgraded a room with the beds upstairs. And, he felt so little. And then it was funny, though, because he didn’t change my room. There was four stairs at the front of this hotel. 

 

Then he offered assistance to go down these four stairs. 

 

I’m like mate. 

 

Natasha 

After you’ve just done the flight of stairs, let’s go. 

 

Ryley 

I’ve just gone up and down stairs in the bedroom, but, he felt pretty small, but, we had a bit of a laugh about it later on when I came back, and, I think that’s what it is about. Mate It’s all good, you know what I mean? I think that’s actually pretty special that he actually saw me, and he was serving me and upgraded our room in front of me, and he didn’t see the disability. 

 

Natasha 

Yeah. 

 

Ryley 

So that’s where my mind went. And, you know, people listening at home are probably going say mate how did he not see that. Like that’s so silly of him. But I think it’s something special. And that’s just the way you take those things. I didn’t take it as something rude. I thought it was pretty cool that he didn’t see that disability and didn’t think I needed that assistance. 

 

Lisa 

Why do you think The Olympics get so much more coverage or airtime, all those sorts of things than the Paralympics? 

 

Ryley 

Yeah. Well, look, I’m going to my six Paralympic cycle. so Paralympic Games, Olympic games is every four years. it’s not like, you know, other sports where they have their major, you know, premierships or whatever, every year. We have it every four years. So we don’t get that time in the spotlight as much as mainstream sports. 

 

It can be tough, but what I have noticed over, as I said, this been my six Paralympic cycle is the growth of the Paralympic Games. the growth of mainstream media taking it over, the acknowledgment, of just people in the community of the Paralympics in Athens, my first Paralympic Games. I know Sydney 2000 was a great success, but in Athens I was pretty, underwhelmed, to be honest. 

 

So, it was, you know, I think SBS did the coverage then, and, you know, just know I don’t know if the Paralympics was sort of in the vision of most people then, there’s a half an hour, highlights package a night. And how are you meant to be a role model for kids with the disability or, you know, a household name. 

 

If you get a half an hour package every night? it grew a little bit in Beijing. Obviously on the same time zone and I can’t remember the time package there, but it’s a little bit more, maybe a couple hours a night. And then London, it took off a little bit more and especially the UK, the UK, it was live on channel four over there. 

 

Ryley 

They did big billboards, you know, they I think one of them, I can’t remember it said, but it was a big black sign with white, writing after the Olympics finished and went, thanks for the warmup and then had the Paralympics. 

 

Natasha 

I remember that. 

 

Ryley 

And that was that’s pretty controversial. But, I think that’s pretty cool. And like every game we played in, we won the gold medal in, in London there, but it was absolutely packed and like, people couldn’t get tickets quick enough. You know, to that and, and to the wheelchair rugby, in every sport it was just packed and they really got behind it. 

 

Ryley 

It was awesome. Obviously, time difference for us was the very hard side. You know, getting viewership with, you know, at home was quite tough. Then you went into the Rio Paralympic Games, where there obviously was the whole Olympics and Paralympics I worried about, you know, just crime and the games in general going ahead and whatnot, because it was just a bit unorganized. 

 

 

 

 

It was an amazing games, amazing. And that was the same. Wheelchair rugby was the hottest ticket in town. And, it was just we played the gold medal final there and won the gold medal, and it was just probably the most hectic game in my life. Just, you know, I think it was 6500 people in that same year, the loud, packed outs, people standing everywhere in the seats, screaming Brazilian fans. 

 

It was incredible. And then back at home, we got the reception as well. I feel like that was when I think channel seven took over. Then they might have taken over in, in London, I can’t remember, but yeah, they took over and did really good. you know, I think it was starting to go on like catch up TV then and on apps and whatnot. 

 

And then we obviously went into Tokyo. Tokyo was a bit of a letdown because Covid bloody, Covid, we couldn’t obviously have people in the crowds or no family could come over. And I know, like wheelchair rugby in general was sold out within two days of them opening tickets, but then we played in front of absolutely no one. 

 

Ryley 

It was like crickets. So when you’re playing out there, it was weird. It was, it was like you’re playing in a training facility, and it was just eerie and just it was hard to get that adrenaline. 

 

Natasha 

Was going to say. It must have taken the momentum out of it a little bit. When you draw on that crowd. Yeah, yeah. 

 

Ryley 

I, I don’t hear the crowd when you’re out there. Like, even though, like, you know, I wouldn’t be able to hear you screaming at me in front of, you know, in front of those crowds when you’re out there. It is brutal. You don’t actually hear the crowds, but I think it’s just that the white noise. 

 

Natasha 

The energy. 

 

Ryley 

You just feel that energy. That was weird. But I think the good thing is Australia was going through another wave of Covid and people were at home and now watching the Paralympic Games and Channel seven did a fantastic job. Really good job of, promoting the Paralympic Games. You know, it was on it was on I think it was 7 or 7 Mate and it was on continuously. 

 

And then you obviously had all the apps where you could go in every different sport, those highlight packages in there. And I’m not sure the numbers for the Paralympics almost got as many views as the Olympics. I think that’s really special. And, I think it was amazing for people to see what people with disabilities can do and the barriers they can break down. 

 

And, obviously we talked about early in the show as well about kids with disabilities and, and having role models. How good is that? You know, they see role models out there. 

 

Lisa 

So, non-disabled community came. 

 

Ryley 

Exactly. 

 

Lisa 

It was their second home because there was nowhere to go to, it’s kind of like, oh, this, this Paralympics. This thing is kind of all right. 

 

Ryley 

It’s almost educational, right? Like, it’s almost educational for a lot of people as well, because so many people, you know, might look at us and go, oh, how are they going to do that? And I see us compete in sport and oh wow. Yeah. That’s how they do it. Yeah. That’s it. They can do stuff. 

 

Natasha 

oh my god. 

 

Ryley 

God. Oh my god. We get that a lot don’t we. But Channel Nine’s taking over the Paris Games and I’m looking forward to seeing what they do, but, Yeah, I’m sure every night they have every day there’s going to be sort of 12 hours of, of, of coverage on, on, the channel and then obviously through the app as well. 

 

Ryley 

Obviously, it’s going to be different because Tokyo, where we had such high, viewership, was almost only our time zone, I think now to one two hour difference. But then Paris is going to be about a ten hour difference or what not, so you know, it’s going to be hard with the times there. But, yeah, I’m excited. 

 

Ryley 

I’ve really enjoyed seeing, the growth. 

 

It’s been so good to watch it grow. Not just the Olympics and Paralympics, but representation across the board. I know there’s a long way to go, but we’ve certainly. 

 

 

Lisa 

Always room for improvement. There’s always room for improvement.  

 

Ryley 

But hey, as we spoke about Brisbane 32 is coming up. Australia will get behind it and unfortunately might not be our time. Well, you might you say you.  

Natasha said she might be going for that record. The oldest record. Hey, I’m all behind you for that.  

I love that, but, the thing is, there’s going to be a new generation coming through who potentially been watching athletes like myself and Natasha, and we’ve been their role model, and I think that’s even more special watching athletes that you have been able to mentor or motivate and they’re coming through and representing Australia like that’s, you know, I’ve won two gold medals, you know, and, and one world champs and whatnot. 

 

Ryley 

To be honest, that would trump that. 

 

Natasha 

There’s nothing better than that. That’s a feeling of knowing that you have helped to motivate and inspire a junior coming through and in, you know, whatever area of life when you have a disability, you know that your that your visibility, your mentorship, the things that you’re doing have actually helped them to go out and achieve their goals and enjoy incredible things. 

 

And it’s yeah, it is. It’s definitely special. 

 

Lisa 

You think your mindset as an able bodied as opposed to now has changed. But now, now how is it different? 

 

Natasha 

Totally for me. I’ve always been a person that’s been motivated with my goals, but this is on a completely different level. I think it’s because, you know, I spent pretty much ten years bedbound. 

 

Lisa 

Yeah. 

 

Natasha 

And, it just it’s given me a new perspective on life. And then I know that sounds really fluffy, but it’s true. It’s true. I see life and opportunities in a very, very different way. Now, if something gets thrown at me, it doesn’t matter what challenge it is. I’m like, hell yeah, I’m doing it. I don’t care. 

 

Natasha 

You told me I could be absolutely crapping myself, but I’m like, I’m going to do it anyway because life is for living and you really know that when you’ve spent so long not being able to do anything, not being able to do a damn thing for myself, having to rely on somebody to wipe my ass and shower me every day and not be able to feed myself and not be able to sit up on my own and just those things have changed me as a person. 

 

So now I’m like, yeah, do you know what? Bugger it. I’m going to go. I’m going to try. I don’t care, I’m going to get up at 5:00 in the morning, every morning and make sure that I do the things that I love. And I’m going to stay up 20 hours a day doing stupid shit because I want to experience life and I want to make up for that missed time. 

 

Lisa 

But whether it’s through exercise or something else, it’s such a bloody, so important you realize that when you have it all taken away. 

 

 

Natasha 

Exactly. 

 

Lisa 

I want to move now. So now every time I go to the gym like I look stupid, I look ridiculous climbing on equipment and lifiting. 

 

Natasha 

But but who cares? And we’re lucky to be able to do that and I think for me I, I had to start somewhere. I had to take those initial steps to get myself out of bed. But there was always this goal that it was never about me wanting to get to the Paralympics. 

 

At that point. It was just about getting myself up and being able to, you know, transfer out of bed on my own, shower on my own, go to the toilet unaided. And those goals progressed as time went on. And I’m like, do you know what I there is so much more to life. There’s so much more to life than just, you know, experience the grind day in day. 

 

I want more and I think and that’s the case for a lot of people. And it doesn’t matter whether you have a disability or not, you just got to go out and chase those goals and dreams no matter what they are. You know, no matter what obstacles are there in the way, you just find a way of, adapting and overcoming. 

 

These goals might be different to what they were years ago, but so what, I’ll still go out and achieve great things. 

 

Lisa 

Yeah, 100%. And that sort of answers my next question. I was going to say that there’s a lot of people who just want to generally be fit, whether it’s going for a walk, I’m going to the gym, that sort of thing. Aren’t aiming for the Paralympics, like you said, but just want to be  more fit and healthy, whether they have a disability or not and whether or not that is, functional movement. 

 

So they can just get up and do basic things or perhaps a bit more. But what sort of advice would you have, both of you, for those people who are really struggling with the motivation or something like that, because you’ve both just been absolutely amazing in the way you found that motivation despite challenges? 

 

Ryley 

Yeah. Well, for me, I think time management is huge. It’s, it’s absolutely crucial. you know, setting a calendar, setting time. So, yeah, you know, for yourself, for your physical, for your mental health, we can all get caught up in this world, with, you know, being social or caught up in the Netflix shows or whatever you’re doing. 

 

Set yourself a routine so you know that, hey, it’s 7 a.m. Let’s, you know, it’s time to go to the gym. You know, 7 to 8 or 7 to 9 or whatever you are doing and just get it done. There are days, and I’m sure Natasha’s been through the same with me there is time. She just, like I could not be bothered training. 

 

And I had one yesterday. I could not be bothered to try that I, I feel just absolutely drained once I got into it and just push that first five minutes and just got warmed up, I was like, what was I whingeing about? 

 

Lisa 

Oh yeah, it was easy. 

 

Ryley 

Just just get there, get to the gym. Start your warm up. What have you been doing? And just it’ll be okay. You’ll be fine. You know, if you aren’t feeling the best, just take it a little bit easier that day. You’ve still done something, and consistency is huge but yeah, when I say time management, there’s always enough time the day there’s people out there who say I don’t have enough time. 

 

I’m not saying I was the most busiest guy in the world. But a couple years ago, I was going through, running a CrossFit gym, teaching kids with disabilities, training for myself, working full time for Suncorp, captain of the Australian wheelchair rugby team, co-captain of the Australian Paralympic team, as well as driving teenagers around for school and sports every afternoon. 

 

And people like how do you fit that in. I just had to get up at 4 a.m. and finish at 8:00 at night. You know, as well as, you know, cooking some dinners in there and whatnot. It was brutal. But I absolutely loved it. At the time I thought it was hectic, but looking back now, I’ve cut a lot of those pieces out now just to try to simplify my life, I miss it! 

 

 

 

I miss that, you know, I miss being that hectic and now I sort of sit around. I’ve done my training for the day, I’ve done my work and I’m like, what do I do now? What do I do now? And that’s weird. 

 

Natasha 

That’s what I think I’d be like if I tried to cut out all the stuff that I get done in a day. So I totally get where you’re coming from. 

 

Ryley 

That’s being organized, right? 

 

Natasha 

Exactly. You can’t live that kind of lifestyle and have goals without having that planning in that and that very solid idea of what needs to be done in a day and how you’re going to slot it all in, I think. And that that goes for anyone, regardless of what they’re doing in life. Planning is so important. 

 

Ryley 

It’s not only being physical, it’s not only about going to the gym and stuff, like it’s about your food selection too. I guess people who aren’t as prepared if they like thinking, oh, what am I going to have dinner at 5:00 at night? They’re going to then go the easiest option that’s going to be something probably not the most nutritious for you. 

 

Ryley 

and I see a lot of that with, teenagers that they don’t have that, a lot of them don’t have, I guess, that organization yet. And, those qualities. Yeah. And they will get there, but they’re like, oh, we’re not organized. We haven’t organized any food or whatever. let’s just get takeaway. 

 

Natasha 

Yeah, they will get Maccas or whatever.  

 

Ryley 

That’s just not the right, thing. So if you’re, if you’re someone who might struggle to go out there physical, physically and do training or exercise and it is hard, or if you don’t want to focus on that and that’s might be a bit too hard, you might not have the time for it. I’m not sure with family or whatnot. 

 

Ryley 

Focus on your nutrition, focus on the food and planning the week before. Maybe, you know, I, I liked the one of the things I like to do is I like to have a two week food plan, and we go sit down and we put myself, my partner put down the dinners that we’re going to have. And so the lunches we’re going to have and that means we’re organized, we know what we’re going to have. 

 

We’re not like last minute. Oh, let’s quickly duck to the shops. We forgot those ingredients. 

 

Natasha 

And when you do that, you become like, you find you lose so much time. Like, so much time is wasted on thinking about things at the last minute rather than efficient. Yeah. Oh, it’s just it is exhausting. 

 

Lisa 

The time I’ve had to think of and all my choices. Yeah. 

 

Ryley 

And it is annoying organizing that two week sort of roster of food. Like you don’t obviously do the same thing every two weeks, but you might mix it up. You might keep some in there all the time. The rotation. Yeah, it takes time on a Sunday or whatever. You do it Friday afternoon. It might take an hour to organize that, but that one hour you’ve organized that you add that two weeks of trying to think what you’re going to cook and going to the shops and stuff like, hey, equals a lot more than that. 

 

Ryley 

So just time management, that is crucial. 

 

Lisa 

100%. So tell me what’s coming up for both of you. You’ve both done incredible things in the past, but for the future. What’s coming up? 

 

Natasha 

so for me this year, I’m just going to be working towards the, Wheelchair Power Athletics Grand Prix in Switzerland, which I’ll have coming up in June. Like I said before, my hope was to try and make it to Paris, but I don’t think I’m going to be able to get the qualifying times required before then. 

 

But we’ll see. We’ll see what happens. Stranger things have happened and then we will just keep working towards the Commonwealth Games, if it happens, we’ll see what happens with that. And then the next Paralympics. So. Yeah. 

 

Lisa 

Legend. What about you, Ryley? 

 

Ryley 

Yeah. For, for me. Well, as I said earlier, by the time this podcast comes out, we’ve hopefully qualified for the Paralympic Games. So, mid-March, we go to New Zealand and compete against, seven other nations. top three, from that competition will qualify for the for the Paralympic Games. 

 

I am, you know, very confident. But as you said, stranger things can happen. Hopefully not in the other spectrum for us. so yeah, hopefully by this time, listening to this says, yeah, we’ve qualified and we’re on the road to, the Paris Paralympic Games. I’m very confident about that. We’re looking really good at the moment. 

 

The team we, we’re the world champions. We won the World Championships in 2022, and then we won the World Cup in the 2023. So, we’re peaking at the right time, hopefully. so we’re definitely in there in the run there. But just like so cliche of me right now, we’re just going to take one game at a time. 

 

And I know that is so cliche, but seriously, you need to do that because if you think too far ahead, well, you get you’ll get called out. And it’s happened to us before we thought too far ahead and you get caught out in the moment. So, yeah, looking forward to this year. I’m just hoping my shoulder can hold up to it. 

 

And I look, I know mentally I’ve accepted that I’m not going to be the athlete I once was, where I was, you know, a lot stronger. And I could just hold those high intensities for, you know, that hour and a half game. I understand my body’s not going to be at that peak shape, but as long as I can do what I can do for the team and, you know, let’s say out of ten, if I’m hitting those eights, consistency within, I’ve done a great job. 

 

instead of trying to hit those tens and, and, and making more mistakes. So that’s my goal personally, I’m looking forward to this year and yeah, encourage you guys all to watch the Paralympics, obviously watch a wheelchair rugby, but definitely watch Natasha when she qualifies. Hey, we’re right behind you Natasha. 

 

Lisa 

I have my fingers crossed for both of you achieving those goals. Say, one of the questions that we ask all of our guests is, what about you, or about fitness, health…All of what we’ve been talking about is unexpected? 

 

Natasha 

I think for me is, the level of anxiety that I suffer around this stuff. Now, people often look at me and think, you know, you’re positive thinker, you very, very confident and and, you know, you just go out and do the things you want to do and that must be really easy. But it’s the it’s the battles that go on in behind the scenes in my head. 

 

I am a bag of anxiety constantly. Constantly. And it is a, it is a battle every single day to try and get past those, those anxious moments in order to go out and do the stuff I do. Yeah.  

 

Lisa 

And what about you, Ryley? 

 

Ryley 

Yeah. Well, Natasha sort of stole the words from my mouth, but it’s okay, because I let you go first. 

 

Natasha 

Sorry, sorry, sorry. I can change it if you like it. 

 

Ryley 

That’s all right. I think it’s very important to be honest. And, Yes. Exact same as me. I suffer a lot of anxiety when I represent Australia, and a lot of people don’t know that. And, I am before every game. I’m, you know, I’m probably too much information here, but before every game I’m spewing up, no matter what’s happening in that space, because the pressure I put on myself, and that’s the pressure to succeed and play it the best. 

 

And a lot of people don’t see that mental side of athletes. And I think it’s it’s all fine and dandy. And you just try and and you get to just perform one of the things what, you know, almost made me retire from sport is it’s not the hard work you have to do. It’s not the travel that’s hard enough as it is. 

 

It’s the pressure you put on self and the anxiety before every game. I just can’t handle it. And I go, what am I doing to myself? Why am I still putting this pressure on myself? 

 

Natasha 

I feel ya. 

 

Ryley 

Yeah, mental health is huge. And I think, yeah, we’re talking about this topic is I think just people just need to understand the mental health side of things is a real thing. it is a real thing. And don’t be afraid to talk about it. Don’t be afraid to, I guess, explain it to people. 

 

Just run with it and accept it. Laugh. Yeah. I’m anxious. Cool. You know what I mean? Yeah. I’m, I’m just feeling a bit sick. Yeah. Cool. Right. Move on, Ryley. I’m learning constantly how to battle with my sort of anxiety there, and, I guess mental health, and, it’s always going to be a battle. 

 

But, that’s. I guess that’s something for me. hopefully I answered okay. And we both have the same topic. 

 

Lisa 

I didn’t want any specific answers. Just the truth. But thanks so much for, for mentioning that because I suppose we see, I’m generalizing here, but the, the shiny Paralympian who doesn’t have any worries, you know, but to be able to talk, talk really honestly about that, I appreciate it. 

 

Ryley 

Yeah. I think it’s very important. Very important. You see so many people out there was you know, anxiety or mental health issues and, or, you know, just listen to find those positive people around you and those and that’s true friends who are happy just to be in you. You know, they don’t even have to talk back if they don’t want you. 

 

They just need to be an ear for you just to just to vent to when everyone goes through it. if you say you don’t have any mental health issues sorry, you’re lying. Because everyone has stresses, everyone has mental health issues, and it’s not embarrassing and it’s not embarrassing at all. just talk about it. 

 

And if someone’s, paying you out about it, will they? Not the people you need to keep around you. 

 

Lisa 

Oh, no. Absolutely. I remember reading something years ago that said that we assume the strongest people are all the guys in my gym. Bodybuilders lifting weights. Nah, the strongest people are the ones who maybe sit on the couch and text a friend and go, I’m not okay, I need help. And always that takes way more strength than it does to, you know, lift big weights in the gym. 

 

Ryley 

It’s going to be controversial, but probably half them are at the gym because they’re worried about their self-image. Yeah, you know what I mean. You never know. Obviously they might just want to be healthy and fit, but they also could be worried about their self-image. And that’s okay. That’s all right. Do you talk to people about it? 

 

Accept it like we’ve just talked about self-image earlier, you know, everyone worries about what they look like at the end of the day, but it’s you just got to try to get it in your head that worry about yourself. Don’t worry about what others think of you. Just treat people the way you want to be treated and move on. 

 

Lisa 

Yep, yep. Well, thank you both so much for having a chat with me today. 

 

Natasha 

It’s been a pleasure. 

 

Lisa 

Awesome to have you here and so insightful. 

 

Ryley 

Absolutely loved it. Thank you. 

 

Lisa 

It’s been good fun. Where do I find you. I know I love following both of you on insta, but what are your socials? Where can we find you? 

 

Natasha 

Okay, I’ll go first. On on Instagram I, the underscore invincible underscore woman. also, you can find me at invincible official and the Two Cripples and One pair of legs podcast. 

 

 

Ryley 

I love that I’m off to listen to that. 

 

Natasha  

Yeah. You should actually we should. We need to get both of you on the show. I think, I think that’ll be fun. 

 

Ryley 

Yeah I love that. There wouldn’t be any pairs of legs, except for you. 

 

Natasha 

I know exactly. I know right? I bet the odd one hey. 

 

Ryley 

You would be, you would be. 

 

Lisa 

You would think you would. 

 

Ryley 

Yeah. For me, just social media is just Ryley Batt. Spelt, a little bit differently. Y l e y, Yeah. My parents had to spell my name different. No one knew how to spell my name growing up, but, yeah, follow me on Facebook or Instagram, but, yeah, once I do a little bit of a side podcast with, I guess, guest host sometimes with Kurt Fernley, You Little Ripper. 

 

So, I do love the podcast world, and that’s talking about the Paralympics as well. And, keeps you up to date with all the news there in the Paralympics. So, make sure you not only listen to this podcast, you jump on you Little Ripper as well. 

 

Lisa 

you guys you’ve been hosting for years, and you just showing me up here. 

 

Natasha 

Not at all. 

 

Lisa 

But no, thanks again. Really appreciate it. Thank you, thank you. 

 

Narrator 

Thanks for listening to Unseen Victories beyond the Paralympic glory. Since recording this episode, Ryley Batt and the Australian Steelers wheelchair rugby team have qualified for the 2024 Paralympics. Congratulations, Ryley! And Natasha has won the esteemed title of Gold Coast Para Sports Star of the year. Well done Natasha. 

 

Lisa 

Thanks for listening to that was unexpected. If you liked what you heard, and want to hear more than hit subscribe wherever you get your fix.  Have any questions or topics you would love for us to tackle? Great email podcast at Youngcare.com.au. We can’t wait to hear from you! Check out our show notes for transcripts, video recordings and to find out more about our guests plus the useful resources they share. 

 

You can reach us on Facebook, Instagram, X, and LinkedIn at YoungcareOz.. Let’s not forget, an inclusive community is everyone’s business, so let’s keep working together to break down barriers and smash them stereotype. 

 

Stuart 

In today’s episode of ‘That was Unexpected’, we touch on the power of friendship.  

Three best friends talk about their journey – from teenagers who experienced a life-changing event together, to adults whose careers have been shaped by this very event.  

Dive into part one! 

 

Lisa 

So we’ve got three guests in the Pod studio this morning. It’s the first time that’s ever happened and just to make it really tricky for me, my executive function is getting a workout, we have two Bens. Hi guys, can you please introduce yourselves for our audience.  

Ben H 

Doctor Bear? I’ll let you go first.  

Ben  

So I’m Ben Beer. I’m, Orthopaedic spinal surgeon, based both at the Princess Alexandra hospital and then do my private work down the Gold Coast, where I live with my three kids and beautiful wife. And I’m here because I’ve got a, intimate knowledge of, having had a very close friend go through a spinal injury and spinal cord injury about 21 years ago, and that is Ben Harvey.  

Ben H 

And, that’s me. I’m Ben Harvey. I am a C4, c5, incomplete quadriplegic. I had a rugby accident ten days before my 16th birthday, so little 15 year old, well not too little, running around playing rugby and, Yeah, that’s me. And I now live in Grenada with my wife Melissa, and work for Affordability Support as a disability advocate and advisor. So working in-house to make the company more disability friendly and then getting out in the community to make the community a bit more disability literate.  

Lisa 

Awesome stuff. Yeah, we definitely need some of that and Tim all the way over in Europe. Hello, can you tell us a bit about yourself and what you’re up to? We can all know that from the research side of it, of course. 

 

Tim 

Yes. Nice to be with you all. I’m Tim O’Shea I’m currently in Salzburg, Austria, but I live in, Boston, Massachusetts, in the United States. and I’m an assistant professor in biomedical engineering and a spinal cord injury researcher, at Boston University.  

Lisa 

Thank you. Now, what I find really great about all of you guys is that you all went to school together, and then Ben H. Acquired his disability. And from what I hear, you’ve all fallen into your respective professions because of that. So you weren’t originally planning on a research career or a, career in, in spinal surgery, but you you’ve ended up doing that because of this lovely man here. Can you tell me more about that?  

Ben B 

For me personally, I think, it was more serendipity than anything else. I didn’t really set out to be a spinal surgeon. Even as long as two, maybe three years ago now, I was going to do hip and knee surgery and maybe some pelvic trauma. And I had a fellowship lined up to go to the, to the United Kingdom and to do that after my orthopaedic training. And then, there were a few things that changed. 

And then I guess there’s always this gnawing, voice in the back of your head of probably telling you what to do. And if you listen to it, sometimes it tells you the right thing to do. And I ended up pretty much falling into two pretty excellent fellowships, one at the Princess Alexandra Hospital, doing mostly trauma, but a big variety of spinal surgeries and then went down the Gold Coast to a, relatively well known, spinal fellowship down there, that’s quite specialized. And that’s where I’ve ended up, staying and starting my private practice as well.  

So yeah, I think, I wasn’t as clear on my, goals as Tim was, but, yeah, just serendipity that I fell into it.  

Lisa 

That’s really awesome. And what about you, Tim?  

Tim 

Yeah. So, like, when I was, about to graduate high school, I anticipated, going into engineering, potentially being a mining engineer. 

I love math and science, and it seemed like a pretty logical profession. And then, you know, when Ben had his accident, I thought maybe biomedical engineering might be an interesting choice because I could still scratch that engineering itch, but maybe work on something like, assistive technology or neuroprosthetics or exoskeleton and something kind of in the mechanical kind of space. 

But then during, undergraduate, I was made aware of some research in the US that was like, focused on, trying to regenerate, spinal cords after injury with a focus on a reparative strategy. And that seemed really, really interesting. And I got really excited about that. And so I applied for a fellowship and was fortunate to get the fellowship and applied to graduate school in the US. 

So I was fortunate to get into graduate school in the US, and I’ve kind of been on that path now since 2009. I’ve been in the US for 15 years, and I’ve just been making progress, in the career, trying to work on, on new treatments for spinal cord injury. And it’s just something that I really enjoy doing. And, I really wanted to make a career out of it. 

Lisa 

That’s fantastic. A lot of people listening who want to know more about the research, and I do as well. But let’s go back to Ben for a little moment. Can you tell us a bit more about the injury when it happened, how it happened? I believe you’re on the rugby field? 

Ben H 

Yeah. So we were, we were just playing a bit of pre-season footy to get ready for the school season, and, some of my mates threw a team together. So we went down and, we were not a serious team. I was playing footy, probably had a big night the night before, which didn’t help. But yeah, the injury itself, I’ve spoken to other people that have had rugby accidents and they can, like they all know exactly what happened – it was in the scrum. They felt the pop. It was a bad tackle. 

With me, I just ended up…I don’t know if you’re familiar with rugby union, but there’s a thing called a ruck where once someone gets tackled, everyone gets in to try and get the ball back. So I ended up at the bottom of the ruck Hmhm eight forward. I was a forward, eight forwards from each team, trying to get at the ball. 

I’m at the bottom of the ruck with 16 boys on top of me, and I think just lying at that funny angle with enough weight caused the injury. Everyone else got up, and I remember being the last person at the bottom of the ruck, and I knew then I was like, I can’t get up. 

In an unfortunate thing, I was pretty lucky. The ref was an emergency physician, so he knew straight away, this is bad. Yeah. Don’t move him. and, yeah, they called the ambulance and I was off to the hospital.  

Lisa 

Which is where you’re working now, Ben B. And so you’d see quite a few people every year with either not similar injuries from rugby or all sorts of injuries coming from all sorts of things. 

But what’s the main demographic that you see?  

 

Ben B 

The main demographic, is it’s hard to put a, just pick out one. Generally speaking, there’s sort of two modes of distribution. There’s, young, males who tend to engage in higher risk activities. Then for spinal fractures, but not necessarily spinal cord injuries there’s an older demographic of, patients with osteoporosis. They get fractures as well. So usually women, but also men in that old age bracket. Yeah. but it does touch almost every part of society as, young women, older women, you know, middle aged men, it doesn’t really matter. Occasionally a child, but that’s they usually take him to a different hospital. But I’m aware of those patients as well. And, also I get potential spinal cord injury. So it’s a wide variety of people.  

Lisa 

Okay. And prior to all of this, all three of you, did you know much about disability? Did you have disability in your life through school or friends or family? 

 

Ben H 

I’ll go first. there was a guy that we all went to school with. He had a spinal injury a couple of years before mine, so it was funny. When I had my accident, I was like, oh God, I’ve done a Nick. But then also as I grew up my grandfather. This is actually a pretty spooky story. 

My grandfather we share birthday. He, he was a pretty good soccer player when he was a teenager. He was trying out for the state team. He was on the team that they put him back on to basically give some of the other boys a trial. He got a kick in the heart, ended up with a stroke at 15, and was paralyzed down one side of his body his whole life. 

I grew up with my grandfather as actually quite an inspiration for me because he was paralyzed down one side, but he didn’t let any of that stuff in. He would be down in the shed building like ladders, and he taught himself how to ride a bike, he could drive. He used to drive me to school as a primary school student, so I think that probably helped with my rehab because I was like, oh, you know, stuff happens. 

Deal with it. I just had to sensor myself, I was going to say another word, but, yeah, you know, Poppa dealt with his disability and lived a pretty full life. So time for me to suck it up. 

Lisa 

And what about you, Ben?  

Ben B 

I’d say reflecting back on it, which is a long time ago now. I would say that I didn’t really have much to do disability or know much about it, apart from knowing about Nick Hanley. And he was sort of a family friend of ours, but it just didn’t touch me closely. I wouldn’t say that I was aware of, apart from a few people that I went to school with throughout, unless I had a very, obvious disability, you know, being in a wheelchair or having a medical condition that was so obvious, I wouldn’t have known much about disability before that, which I think has improved a lot. 

And I don’t know whether that’s just because now I’m older and I see more of that. But certainly my children, aware of disability and that probably is helped by the fact that we have such a close friend that’s, you know, in a wheelchair that they get to have that, awareness. But yeah, I actually think in society there’s probably more awareness around disability now than there was certainly back then but obviously with, you know, much more gains to be made. 

Lisa 

Yeah. Well, sad. I certainly see my nieces and nephews seeing a lot more disability in mainstream pop culture generally than I did when I was that age. But there’s still a long, long way to go. And what about you, Tim? Did you have much to do with disability pre all of your fantastic work now? 

Tim 

I didn’t have anything to do with spinal cord injury or know much about spinal cord injury before Ben’s accident. We had a friend, in, late primary school. Early high school that, unfortunately had childhood brain cancer. And, he, started to deteriorate pretty quickly and had significant disabilities over the course of the year. 

He was suffering from that disease and so that was pretty traumatic. I’d say. It was a very young age, seeing someone deteriorate in front of your eyes and seeing that kind of effect on how it affects people. That’s an early memory that I have of someone with disabilities that sticks with me. 

Yeah, but in terms of spinal cord injury, yeah. Nick Hanley was someone who had an injury that we all knew of, but I didn’t really know a lot about spinal cord injury when Nick… it didn’t personally affect me in a way that Ben’s accident did. I feel like the people who were really close to someone who suffered a spinal cord injury know a lot more about the, the, the, the details associated with an injury that people don’t necessarily know. 

So people see people in wheelchairs and they and they think they can’t walk or they maybe have issues with, hand function. But then there’s all the other things that, that go into, dealing with a spinal injury bowl movement, sexual dysfunction, those things that, that people don’t see. I think until, you know, someone with spinal cord injury, you’re not really aware of those things. 

Lisa 

Right. Everyone with spinal cord injuries is different. What’s happening, for one, won’t be happening for another, I suppose.  

What are the biggest misconceptions you think people have about spinal cord injury and disability from, from your perspective, as someone with spinal cord injury and as a surgeon and a researcher in the field?  

Ben B 

I’ll start with this one. I think just going on from what you just said about, you know, everyone’s an individual, I think that’s probably the biggest misconception is that everyone fits in one box with a disability. Everyone is an individual. And I think both from an individual standpoint as the person who may have just acquired a disability as well as their family. Then even from a society point of view and externally is that, each one of those people is an individual with different difficulties, but also with different, abilities. 

It is both harder than it looks and easier than it looks. So, it’s not you know, life’s over. Not over. When you acquire a disability, there’s lots of things that you can do, and you can live a very fulfilled life with a disability. And when, when you are early on, you might not be saying that as you’re mostly grieving. 

But then from, from the outside looking in, you know, some people might think, oh, that person’s life so hard and so difficult, but if you can get to know them individually, you actually think, wow, you know what a great life they’re living. You know, you’re working, you’ve got a wife, you’ve got a family that there’s so many good parts and everyone has difficulties in their life. 

Some difficulties are much harder than others, and pretty much every person, there’s always one person, at least one person that’s got a harder than you do. And I think that’s the thing that you kind of don’t realize and people don’t realize early on, is that that there are people that have it harder and you can just have a fulfilled life by getting on with it and moving on and focusing on what you can do. 

 

Lisa 

Yeah. Well said. We’ll get that printed on a t-shirt I think. I really like that.  

Ben H 

I guess Tim touched on it earlier, that this might be more spinal cord specific, but like, you know, people may think, he can’t walk. I was lucky knowing Nick Hanley, that was a guy we were actually playing with on the day. 

His older brother also had a spinal injury playing rugby. So they were both very important people to me in the early days of my accident. And they came up to see me and they were like, ‘forget the walking. The hardest thing for you is going to be bladder and bowel’. And I guess knowing that early on prepared me for that because people say, you know, he can’t cope. 

It’s also like managing your bowel and bladder is not easy with a spinal injury. And then disability in general, like, yeah, access is getting a lot better with there being more accessible bathrooms and stuff in the public. But then it’s the next problem is getting people that are able bodied to stop using those bathrooms because, like, you know, we need them and sometimes people are less confident than others. 

 

And if you’re in a rush and you need to go, you need to go. And if someone’s just in the bathroom because they didn’t want to do a poo around other people, like, yeah, accessible bathrooms are not for you or a shopping trolley or whatever, whatever the reason.  

Lisa 

So that was the biggest challenge you found when you, you know, acquired the disability? 

 

Ben H 

Look, it probably wasn’t the biggest challenge, but it would have been if I didn’t know. And as Beery touched on, you know, knowing that you can go on to live a full life afterwards, it probably took me a little bit longer to realize that. Yeah. I think having people like me I’m married, I have a job, I live with my wife like I’m not in a facility. 

There’s a lot of people out there like that. Yeah, I think people like yourself.  

 

Lisa 

It’s so awesome for all our audience. And I want everybody to know that you can lead a really fulfilled life and do pretty normal things. Get married, have a job, go grocery shopping. Oh, there’s all sorts of things we don’t see represented in. 

Tim, I’d like to ask you a little bit more about your research. Can you explain it to me? But the non-academic version, please.  

Tim 

Sure. I’ll do my best. I’ll, just kind of, provide some context. So, I work in a, you know, biomedical engineering department. So, my lab, is filled with, with people who are biomedical engineers, with a focus and interest in developing new materials, new biomedical materials. So, things that look kind of like jello or look like, little nanoparticles that you can barely see. So oftentimes it just looks like a clear solution. But we’re trying to develop different, material-based strategies to try and, enhance or make better the regeneration that can take place in the spinal cord, after injury. 

And the way we’re trying to do that is to guide the functions of some special cells that are in the spinal cord. So, in your brain and spinal cord, there are kind of two populations of cells that, we kind of categorize. So, there’s the neurons. Those are the ones that make the neural circuits that kind of transmit the information that allow you to kind of feel things and to move your arms and legs and your fingers. 

But then there’s these other cells as well in the, in the brain and spinal cord called glial cells. And those cells essentially do everything else. And they support the functions of these neural circuits. Now, after an injury to a brain or spinal cord, those cells just don’t have the ability to mount a wound response. In the same kind of way, you can have a wound response, happening like the skin, for example, you cut your skin, a certain type of skin injury, you will get repair of that skin, and you’ll look at your, your cut in a few days after you’ve, you’ve endured it.  

 

You may not even know that you even had a cut there in the spinal cord. You have an injury to that tissue. And the cells, the glial cells, the neurons don’t have the ability to mount a similar type of wound response. So instead, you get this kind of fibrotic scarring take place. So, if you have a really big skin injury, you’re probably, you can see a persistent scar. 

It’s the same kind of thing in the spine where you have this persistent scar and that just creates an environment that won’t allow the circuits to repair. And so, what we’re trying to do is to essentially enhance the ability for the glial cells in the spinal cord to do this wound repair so that we can get this more effective recovery of neural tissue in the environment that was damaged. 

And we do that research using materials as the way to stimulate the glial cells to do this repair. And we do all our research, in what are called preclinical models. So, these are in, animal models where we’re really trying to understand the kind of cell based, understanding of what’s going on. We look to see whether or not our animals recover any kind of function as part of that intervention. 

But we’re really looking at, kind of fundamental biology in the research I do, given the kind of constraints we have, that’s kind of where we could make the biggest impact. And we work with collaborators, who are working in various, areas of spinal cord injury research to help amplify our outputs. 

And, I’m, Yeah, I really excited about the research that we’re doing. We’re a long way from being able to say, “Ben, jump on the operating table and other Ben here, inject this material and, and apply the treatment”. But we’re learning new things every day, and we’re kind of pushing forward, trying to, to search for, for an approach that will improve outcomes. 

Lisa 

I think that’s absolutely brilliant what you’re doing. And it’s exciting for people with spinal cord injuries. I mean, your focus spots, but what focus do you think there is or what ability is there to fix a brain injury or something like that with this technology?  

Tim 

Yeah, definitely. So, our approach is we apply and study in spinal cord injury, but we also study them in the context of ischemia, stroke and hemorrhagic stroke which many people experience in the brain, which causes similar types of tissue injuries. We don’t work actively in like repetitive traumatic brain injury work, but similar strategies are being applied in models of TBI, traumatic brain injury. Yeah. and these cells are similarly affected. So you have an injury to that tissue. It won’t be able to mount a natural repair response to recover that function. And so interventions that augment the cells ability to do that, can be applied in various types of, of brain and spinal cord injuries.  

Lisa 

Okay. And you’re currently you live in Boston, you’re currently in Europe. But is there anything similar that you’re aware of happening in Australia? 

Tim 

Yeah. So there’s a number of researchers working in Australia, in many areas related to spinal cord injury. In fact, at the moment I’m in I’m in Salzburg, at the, essentially a foundation that supports, spinal cord injury research called ‘Wings for Life’. And it’s, an organization that’s come out of, Red Bull, the, the energy company, the founder of Red Bull had had a good friend, who’s whose son and brother had a spinal cord injury in a car accident. And he was very enthusiastic about supporting, research that would potentially be able to push us forward for a cure. And many people have seen the World Run initiative that they do to raise money for spinal cord injury research. And it’s such a great organization in a number of ways. And one thing that is particularly nice is that the Red Bull organization supports all the overhead costs to run the foundation. 

So every bit of money that you raise from the run or that gets donated goes directly to the researchers to support research. Which is a really awesome initiative that, we’re very thankful that that that it exists and it’s really been able to push the research forward across many different areas. But suffice to say, there’s also Australians at this conference. 

So there’s a UQ professor, Mark Rittenberg, who does a lot of work in spinal cord injury. There’s, professors from University of New South Wales that are working in the rehab space. There’s also people in Brisbane at Griffith University working on, spinal cord injury research that’s been funded by the government and the Perry Cross Foundation. 

So there’s people who, who are pushing us forward in, in many different areas. And, many people collaborate together to try and reach a common goal. We all have the same kind of goal for what we want to achieve and we’re taking different strategies to get there. But we work together when we can to push forward on that common goal. 

Lisa 

It’s awesome to see, especially the big corporates like Red Bull getting on board to support this, because it’s unfortunate that we see a bit of a divide between medical research and corporates. They don’t have an awful lot to do with each other. So when I do, I do hear about things like that. It’s great. So are you guys back to playing rugby these days? 

 

Ben B 

I played for a while after, but, just like, most early to middle aged men, I stopped playing when I, started working properly, and it’s a bit hard to justify, attending the hospital on a Monday morning with a black eye or bruised something, and then trying to get over that, during the week. 

So, I gave up essentially when I started working in about 2012.  

Ben H 

But you both did go back afterwards?  

Ben B 

Yeah, played for a long time. I think it was, even though I, you know, we had a very close friend, go through something like that. It was the, you call it youthful exuberance or something? or maybe just the fact that you think you’re ten foot tall and bold, very funny. Young. That couldn’t possibly happen to you even when it’s happened to someone you know very well. Yeah. I don’t think I ever really thought about, you know, that that it could happen to me, even with that. So, it didn’t, you know, it didn’t really factor in from my memory of going back to play rugby. 

 

Ben H 

Oh, that’s the thing. Like when I first had my accident and people like, oh, what happened? And you say, oh, rugby accident and like, oh, bloody rugby. But it’s not that common. Like I was the only person in the spinal unit with a rugby accident. If you were going to ask me what the key demographic was for a spinal injury, it would be young guys on motorbikes. Or New Zealand tourists diving into sandbanks on the Gold Coast like, yeah, that would have been, that would have been at least 3 or 4 guys come through while I was there that were driving too fast on their motorbikes on the highway. And then, yeah, a couple of Kiwis that dived into a sandbank.  

Ben B 

I definitely agree with that. It’s the motorbike accidents, the pool injuries. Or just engaging in some high risk activity like a big trampoline flip or something silly that, you know, you think you can do it. And you find out you can’t. It’s pretty quick turnaround. Yeah. probably the last demographics, though. Over 50 year old up a ladder when they shouldn’t be. 

Lisa 

Yes. Hello, dad. If you’re listening, get off the ladder. But, Yeah, I think that’s a common experience that a lot of us have acquired disabilities. It’ll never happen to me. And proved very wrong. 

Ben H 

Well, I was going to say, Tim went back and he had a pretty, not as bad as mine, but he also had a bad injury the same year, which may have spurred on his desire to get into the study because he spent a lot more time at the hospital with me than the others because, his arm was in a sling so I was in, wasn’t able to play and could visit instead. 

Lisa 

That would have been great having that that support from Tim really early on.  

Ben H 

I had it from all of them. Like even like basically I think, Tim, you you say that, when the boys were going to rugby training, you’d come up to see me instead.  

Tim 

That’s right. It was a very crazy week, that week, as I remember it, like, it’s very vivid in my in my mind. So Ben has his accident on the Sunday. We find out about it on MSN messenger Sunday night, as one was to do around that time. Yeah. Everyone’s posting messages like thinking of Ben and all that kind of thing. Ben actually, Ben Beer and myself, we were taken up to the hospital, the PA hospital on Monday to go and see Ben and Ben was obviously in the ICU and he wasn’t able to be seen by anybody, but we were taken up and we got to see his Dad. 

He was in a lot of shock and like it was yeah, I, I just remember sitting there in that waiting room. And that was a very yeah very vivid memory. And then like that afternoon I’m getting driven up to the Sunshine Coast to go and play rugby for a trial for the first 50. And then that Saturday we’re playing at Ashgrove and I dislocate my shoulder.  

 

And so that was essentially my season done. And on the Tuesday and Thursday afternoons, rather than going to rugby training, my mum would pick me up from Terrace and she drove me up to the hospital and I’d hang out with Ben for a couple of hours, and then mum would pick me back up and we’d go home, we have dinner and I feel like those times in that very early time, you see a lot of the realities of the spinal cord injury, but then also you see this recovery trajectory, trajectory that happens very early on where like every week you’d go up and Ben would be like, oh, I’ve gotten something. 

This or that has gotten better. Or, you know, I’m able to sit up and do this and look what I was able to do it. So, that was also something that I remember fondly because I’m like, you know, there is this trajectory, this national recovery trajectory that people do have. So like this initial, injury that you have it, you know, things can come back and we don’t really know how people are going to be permanently affected by these injuries. 

So he’s got to do the hard work and stay optimistic and keep it up. So yeah, that was just yeah. That was, that was that kind of a weird a weird kind of time. But, I definitely remember those, those, those times very vividly.  

Lisa 

And I believe you too, Ben Beer and Tim, both of them groomsmen at your wedding? 

Ben H 

That’s right. Timmy made the trek back from Boston last year to be there for the wedding. My best man standing right next to me and then, I had Beery as part of the extended crew. I’ve got a very close group here. I think it was a five. Yeah, yeah. you know, I remember … 

Ben B 

It was only six months ago.  

Ben H 

It feels like longer. Yeah. Sorry. 

But yeah. So they’ve been in my life for a very long time. And I’m very fortunate to have the group of friends that I do. One of my other very close friends who was also in the bridal party, Matt Roberts, he went on to he’s now a urologist and at the time when I was fresh out of hospital, I used to have a lot of, urinary tract infections and bladder issues. 

And so that’s why Matt got into urology. So it’s not just Ben and Tim. Matt also jumped into his career to try and fix things. So yeah. Very lucky.  

Lisa 

Well, good to hear. Before we started recording we were talking about you going into visit all the spinal cord patients with a fresh injury and you mentioned they hadn’t really done much of that. 

And knowing a bit about your story that you were just getting on with life, you got married, you are working and you are doing really ordinary things like grocery shopping. That was really powerful like, nothing special. But that’s the point. You you’re living a really ordinary, normal life. 

 

And when we have newly acquired injuries, we sort of think nothing is ever, is ever going to be the same again. I’ll never work or never get married. And you’re doing all of that. So I think it’s really powerful. If you did go to speak with other people, even if you know you’re not prime minister or something like that, you don’t have to be. 

Ben B 

Not yet. Give him time. You’d have to get over your fear of public speaking.  

Lisa 

All right. What’s this? So what? What did they say to you when you had a newly acquired injury?  

Ben H 

It wasn’t great. The first thing because with spinal injury, they don’t give a prognosis. 

Okay, that’s pretty unknown, but, I was ventilated after my surgery, and that’s probably why when Tim says he went up and Dad was a bit shocked, I think it’s because the doctors pulled him aside and was like, your son’s on a ventilator. And dad was like, oh, yeah, and he’s just been out of surgery. Of course he is. 

And they’re like, no, your son’s on a ventilator. And this could be as good as it gets because let’s see, 4 or 5 is a pretty high level injury. So, yeah, I could have been ventilated for the rest of my life, but, just fortunate that I have a very weird, incomplete injury and I’ve had a lot of recovery. 

Lisa 

And tell me, digging into your personal life. Excuse me, I’m just nosy. So I’ve been wondering about your personal life. How did you meet your wife?  

Ben H 

Well, I think, with a lot of push from the boys. I think you were a bit worried that I was getting left behind? 

Ben B 

Yeah. yeah, I definitely remember that conversation. I think Tim was back or was about to leave, and we were having that conversation about what the next ten years might hold, and that Ben was at risk of being left behind and, and being stuck in a forever rehabilitation cycle. And we sort of had some pretty hard conversations around… 

You’re not going to walk again. You got to be you know, that’s not the goal here. The goals are: be independent, live a normal life, get a job, get some direction, that sort of thing. And that was probably when we were about 24, 25 maybe.  

Ben H 

Yeah, probably took me a few years to really sink in a bit. 

So I got on the apps as you do, because it’s, when was it 2021? Yeah, I think Melissa and I first met on the apps. That was interesting because I was like, well, what do I do? Do I not mention having a disability and then match with people and then be like, by the way, then, you know, you know, I guess it was almost a bit of a defence mechanism of I just got to disappear. 

 

Yeah. so yeah, I, I put a little what I thought was a pretty witty bio; I byo chair, rugby ruined my stand up career, so I am looking for a new one. You know, there’s a lot of apps out there now. My app of choice was Hinge. And so hinge, you can put prompts on your photos, and I’m not quite sure why I put this prompt on this photo in particular, but it was guess the backstory to this photo, known as a picture of me and a good friend of mine that had joined me at a wedding as my plus one. 

Because, you know, at this point I didn’t have a proper plus one. So yeah, but then I was like, oh, she might not want her face out on the app. So I photoshopped, it wasn’t great. But I put Gal Gadot from Wonder Woman, her face on top of that good friend Angela’s face. So it was me and Wonder Woman at the wedding, and it was guess the backstory to this photo. 

And so Mel’s obviously matched with me, and she’s read my bio that I think I’m a bit funny. So she’s like, she’s going high risk, high reward. And her first message to me was, is it Wonder Woman and Superman? The Christopher Reeve years? And I was like, that’s the greatest thing I’ve ever heard. And I think, I think it was love at first sight because I have I think it comes with, comes with you probably can agree. 

You know, you do have a bit of dark humor at times, but lately it’s a perk, I call it. Call it a criple perk. And, you know, I’m allowed to say that word because I am one. Yeah. but, yeah, it’s the sort of humor that only people who have a disability or close to a person with a disability tend to have, other people tend to shy away from those, sort of more fairly politically incorrect, jokes. 

Ben B 

Yeah, you know, when you, when you’ve been around it for so long, it’s almost, it’s part of your repertoire with your friend who’s in that situation. 

 

 Stuart

Thanks for tuning in to ‘That was Unexpected’. This episode is in two parts, if you haven’t listened to part one yet, jump over and have a listen!  

In part one of ‘The Power of Friendship’ we met Ben Harvey, Ben Beer and Tim O’Shea; three best friends whose lives have been shaped by Ben Harvey’s spinal cord injury.  

We delved into Tim’s spinal cord research and Ben Beer’s work as a spinal surgeon…and Ben Harvey has just finished telling Lisa how he met his wife.  

Let’s pick up where we left off.  

Ben H

Yeah, and I’ll just jump in Mel’s defence. She had two cousins with Duchenne Muscular Dystrophy and Muscular Dystrophy growing up. So she’s been around disability her whole life.  

Lisa 

And she’s all over the dark humour and the really inappropriate jokes that we make.  

Ben H 

The things we say behind clo ate and that sort of thing. I don’t think it really benefits them to give them all the information early on because they’re in, you know, the early stages of grief. 

So afterwards, the spinal injuries unit does a lot of work, and they have, you know, the medical staff and the nursing staff and all the allied health there to assist with those sorts of things. Because, you know, just as like we said before, everyone’s an individual and everyone has an individual rehabilitation course, and some people get no improvement and other people will get lots of improvement and completely surprise you.  

That’s why it’s difficult to discuss prognosis with people early on. But yeah, it takes a little while to build that, you know, you’ve got to get over those early stages of grief and get back to a normalcy before you can have that humour, I think.  

Lisa 

Yeah. Yes. Oh, I guess we do have listeners who are in allied health in the medical professions generally, and I’m wondering what some advice you’d give to them if they do have a, a patient with doesn’t have to be a spinal cord injury necessarily. 

But I’m thinking back to my own recovery. And they all spoke to me like it was the end of the world. Going to a funeral, life will never be the same. And I do understand everyone’s different and there is the need to not say, ‘it’s going to be wonderful, you’re going to go out there, you’ll be at the Paralympics’, but at the same time not to just be negative.  

Ben B 

Yeah. I think, I think it’s very hard for the for all those people. They are often regularly going through grief with each patient because, they’re all empathetic people, you know, that’s why they’re in that job. And they tend to feel what those people are feeling, and go through it multiple times a day, multiple times a year, through different stages with each person. I think probably the biggest thing is to really reiterate that, you know, life isn’t over. Let’s move on but not move on. That’s a hard thing to say to someone early on. But you know, focus on your abilities, focus on what you can do. For Ben, he’s an intelligent, funny, person. And I think, you know, it’s great that, he eventually came to realize that and put himself out there more. And, you know, if he hadn’t have done that, if he hadn’t done that earlier, then he might not have, come to meet Mel. And she’s been such a great person in his life, so it’s not like that we should regret, you know, his early years when he wasn’t doing that as much.  

But once he did do that and he’s opened up in the last 5 to 10 years, he’s really blossomed. And definitely part of that in last few years has been because he’s had that support of a close partner, and he’s realized that he’s enough to start living a full life. 

And, it’s been really great to watch that in the later period. But so just coming back to you, you know, it’s easier for me to say that when I’m speaking to people because I know what’s at the end. But you’ve got to get through that early period and kind of move towards getting back to progressing with your life and living a full, fulfilled life. And the earlier you can do that, the happier you’ll be. 

Lisa 

Yeah, I think that’s great. You’ve got a really good understanding of both sides of the coin, even though you haven’t got that full on lived experience. It’s close, really, really close. And I think that would be so important for one of your patients to be able to hear.  

I can hear that understanding your voice and do the things you’re saying. I’m like, he gets it. He really, really gets it. And most of my surgeons have been wonderful, but you can really tell the ones that just get it from the point of view of a of a patient, I suppose.  

I’ll just have to rate my notes here, but I haven’t been. I have to ask you some questions. Feel free to jump in. I didn’t tell you at the beginning, by the way. Feel free to jump in at any stage.  

Ben B 

It’s hard to ask him questions because he sort of takes over for the next 15 minutes. 

Ben H 

That’s a bit of the pot calling the kettle black! 

Tim 

(laughing) I’m cognizant of that. I didn’t want to dominate any conversation.  

Lisa 

So your in your I’ll call it the research bubble at the moment. During the really amazing work, do you have much to do with patients with spinal cord injury through that time?  

Tim 

Yeah. So through Wings for Life we definitely do. So, at this conference we have people who are working for the foundation or who are patient advocates who come to the conference, who talk with researchers, to understand the research, to help set priorities and goals for the research. So, through the foundation, support that we’ve had for our research, we’ve definitely interacted with a lot more people with spinal cord injury. 

Obviously, I interact with Ben a lot and Ben’s on our research team, actually. So one of the research grants that my lab was awarded from the Paralyzed Veterans of America, it’s a foundation that’s, it’s a non-government organization, in the US, that supports veterans’ health. And they have grants for researchers working on spinal cord injury. 

But there’s one important stipulation that they make for their grantees is that you have to have someone with a spinal cord injury on your team in order to be able to help, set priorities to educate the researchers, on what it’s like to live with a spinal cord injury and help calibrate the goals of the research. 

And I think that’s been really important for my team, because a number of the students that I have working for me, in the lab or working with me in the lab, have never really been exposed to spinal injury. They’re interested more in the kind of strategies that we’re employing from a more intellectual standpoint, from the engineering standpoint or the biomedicine standpoint. 

And for many of them, working on spinal cord injuries, that means to kind of study those. And for some, like myself, it’s more personal, right? It’s more about, trying to progress that, that research forward. And I think they get that a little bit more by interacting with Ben and being able to see why we do the research that we’re doing and why we’re taking the approaches that we’re taking. 

So, I think that should be something that most foundations who support, spinal cord research or, or any kind of patient advocacy group, any kind of, foundation supporting research across, across biomedicine. And they should be encouraging, with lived experience, to be involved in the research, to kind of have that dialog back and forth between the researchers who are passionate about trying to solve the problem, but also with the patients who, could help guide their efforts. 

Lisa 

Yeah, 100%. I think it’s really good that have that in place. I know we’re doing some work with Griffith Uni at the moment. talking to all of that researchers and academics who perhaps don’t have any experience with disability, there’s a, a bunch of us who were on a, on a committee to, to work with those academics to shed some light on, on areas they don’t necessarily know about. 

But your research is so, so exciting and like, sign me up for the brain injury part of it when that that becomes available. But how far do you think you are from human trials and developing it further?  

Tim 

Yeah, that’s I guess a question that we get all the time. Right. And I kind of understand the, the, the urgency, for what we’re working on, and what everyone’s working on in this space. 

The stuff that we’re working on is a fair way away from being a clinical therapy. There are other strategies that other approaches, many of which were developed 20 years ago, which are only now just being explored in clinical trials. And there’s definitely this long process that it takes to kind of get things through from the kind of foundational preclinical insight in this new discovery and something exciting to actually making it through for clinical therapy for patients. 

And it can be a little frustrating, but that, unfortunately, is the way the process goes. Funding helps speed that up. But the reality is it takes a long time. It’s a long path. We work in the pre-clinical space with translation in mind. So, we’re focused on trying to test our strategies in animal models in a way that we could scale clinically. 

But we’re not really at a point where we’re getting the type of repair outcomes that you could say, “Yes, this is at a stage where it’s going to be very, very exciting for human patients”. And there’s a risk of trying to translate too early because if you go too early, you’re kind of committed to what you’re the intervention that you’re trying. 

And that’s a lot of money spent and a lot of time and investment and energy, to try and get it over the finish line. And if it’s kind of a little bit undercooked, the outcome may not be what you’re looking for. So, I’m very cognizant of that. Having seen some of the, the attempts of translation previously, I, I really want to be at a point where we’re getting really robust outcomes in a variety of different severities of injury and animal models, and we’ve got a number of readouts that suggest that this is something worth pushing forward. 

And so I wish I had something right now to be able to be able to translate, but, we’re just not quite there yet.  

Lisa 

Ben, were you going to say something?  

Ben B 

No, I was just laughing because Ben was giving me the eye like ‘see….”  

Ben H  

I did not. 

Lisa 

I can’t see very well from across the desk. 

Ben H 

I think it was a very diplomatic answer from Tim about some of the other research that’s going on. Would that be correct? Timothy?  

Tim 

Well, what do you mean by that, Ben?  

Ben H 

Things being rushed.  

Lisa 

I think I have a fair idea of what he’s talking about. And I’m. As much as I’m signing up for the for the human trials, I would want to have known there had been significant, trials in animals and in other areas before I had anything injected into my head. 

 

Tim 

Exactly, and when you have a personal interaction with someone, with this type of injury, I feel like you’re even more cautious, right? Because you’re like, this could be something that they’d be administering to Ben. Would I want to have Ben, you know, be treated with this intervention? And if my answer is not 100% yes, then that’s something that’s not quite ready for me. 

Lisa 

Wait for the tick from Tim before you go ahead with anything.  

Ben H 

I remember, would have been maybe ten years ago. There are few people in Australia, like, trying to raise money to go over to India, to get, they were doing some Stem so injections there and basically there’s no science to it. It’s like, let’s inject some stem cells into your spine and we’ll see what happens. 

And I think, quote unquote, Tim said to me, if you’re ever thinking about doing that, instead pay the money for me to fly over and punch you in the face to knock some sense into you. Because I think there was some pretty bad stories, like basically teeth were forming in the spinal cord or just massive tumors because, you know, there’s it’s a it’s a, what’s the word? 

Tim 

Teratoma.  

Ben H 

Yeah. 

Tim 

Yeah. If you inject certain stem cells that aren’t committed to certain types of cells, they can turn to any cell in the body. And there’s a number of clinical cases where patients have received treatments in, in Russia and India, and they present at their hospital in the US or in, in Australia. 

And they are starting to suffer deleterious effects. So, they’re starting to lose function. And because of these interventions, not really being ready for prime time and the kind of, you know, complications that go with that.  

Ben H 

And then there’s the other thing; these people may not have been doing rehab before so they go over, they get this thing and then they start doing the rehab and they start seeing some progress and say, maybe if you’d just been hitting the gym more regularly, that might have happened anyway, right? 

Lisa 

Yeah, yeah. So Ben, our surgeon. Ben and Tim, is there any. You’ve obviously got very different areas of expertise, but is there any overlap? Ben, are you seeing some of Tim’s discoveries or anything like that overlapping with the sort of work you’re doing?  

 

Ben B 

Not really. At this early stage, most of the research on the spinal, implemented research on spinal cord injury is more about sort of trying to stop that scarring process by administering some sort of medication. 

So many years ago, it was high dose method. Which is a steroid which is sort of been debunked through some big trials. There was one trial that sort of, you know, it was said it was worthwhile and then sort of went back the other way. And there’s a few other sort of early stage medications that you can give kind of own presentation, to try and reduce the amount of scarring that happens. 

And that’s about as far as we are to any sort of therapeutic, intervention that could be made at the beginning of a of a spinal cord injury. From my point of view, my, my role in a spinal cord injury is to stabilize an unstable spine or decompress a spinal cord or both, as early as possible. 

So that there’s not secondary insult and injury. And then often to make the ability to, be nursed and, and function better because if you’ve got an unstable fracture, even if you are a complete, even if you have a spinal a complete spinal cord injury. It’s, you know, an unstable fracture is not something you can easily live with because your trunk is not stable.  

And that sort of thing. So, yeah. more on, very practical, side of it rather than, any sort of, crossover. But certainly, that’s part of the reason that I’m keeping my foot in the door and, and working in this area. Because if that does come up, become available, I’d love to be involved, you know.  

Lisa 

Excellent. And you don’t have to be biased, but how does Australia fare compared to the rest of the world around this research? I submit this question for you as well, Tim. There’s research and really wonderful things happening globally, but how’s Australia faring?  

Ben B 

I’ll probably defer that question to Tim. Regarding the research. 

Tim 

Yeah. So, I’ll just add to in relation to the research that I’m doing that is not quite ready for prime time yet. We’re really focused on these reparative regenerative strategies, but there’s a lot of, approaches that are showing really good promise in certain types of incomplete injuries. So like electrical stimulation is having, really, really, exciting outcomes in, in recovery of motor function enhancement and lower limbs. 

Vagus nerve stimulation for, for hand function is something that that I heard about today at this conference. That was really exciting research coming out. And in Australia, there’s a number of folks working in that rehabilitation space and the stimulation space that, doing clinical trials that are progressing that research forward and then making a strong contribution, companies, that have kind of started out of research coming from Australia, like, the one that’s, that’s getting a bit of, press of late is, synchrotron I think it is called, coming out of University Melbourne, doing the, the, the kind of brain computer interface, device that they’ve developed for, being able to, to record and actually help with function, with, with people with, with disabilities, which is quite exciting. And, you know, there’s a number of companies working in that brain computer interface kind of space. It’s quite an exciting space right now. so yeah, it’s like in Australia, people are making contributions. 

I would say that Australians, do research in spinal cord injury, and many of them are not in Australia. So there’s a number of people here at this meeting who are from Australia that are not based in Australia. So people who are based in Canada, based in the US for various reasons, in terms of being able to, to get access to funds to, to run their labs and do their research. 

But there are Australians working on this problem all over the world. And I think that’s a pretty, pretty important thing to remember. Just because you’re not geographically located in Australia doesn’t mean you’re not, an advocate for Australian research.  

Lisa 

Yeah. For sure. And, Ben, are you seeing much of a difference from what we’re doing here in Australia compared to the rest of the world? 

Ben B 

In terms of, the sort of outcomes we get from, surgical stabilization and then rehabilitation point of view. You know, the healthcare system in Australia is first class in, in the world. It’s, you know, universal access you get excellent quality care. That’s people who are well trained, pretty well funded. That’s why it’s always in deficit. And then people who care a lot. And so, I think that we get very good outcomes. 

Could we do better? Always. And that’s probably what everyone’s striving to do. and that costs money, time, people, all those sorts of things. So, and then with respect to that and, and the research side of it is that we just need to keep like, we can’t stop researching because we need to continue to improve the outcomes that we can get, but for outcomes that we do get and, and how much we, you know, the quality of the work that it’s top notch. 

Lisa 

So are you seeing much of a change in terms of what they did years ago from surgery point of view to what they’re doing now? I’m thinking back to my heart surgeon, for example, the first round he did surgery. At the time it was, well, world class. And now we’re doing this, made the news…then, eight years later, I think it was I did it again. 

It’s like, oh, I don’t believe we did that. That’s old fashioned. But is, is there much of a change in terms of the surgery you’re doing now compared to what they would have done maybe a decade ago or something?  

Ben B 

Not really. There’s probably just incremental differences in quality of biomaterials that we use, the types of stabilization. I mean, often we used to, and I think Ben has this is we used to just take a piece of the iliac crest as the cage or the filler for where the between the two bits of fractured bone and then put a plate on the front.  

Ben H 

Yeah. I’ve got a big scar on my hip. Got the chop, the chisel.  

 

Ben B 

Yeah. So essentially fashioned a cage to put into the intervertebral disc. now, we most often use a synthetic cage with a bit of allograft bone and maybe some bone from the patient as well, but not big. you know, I think, essentially, though, the surgical, the surgical difference is, is very minimal. 

And, you know, 20 years ago, I don’t think Ben did get, steroids, but that was pretty.  

Ben H 

Yeah I did, that’s why my back is so hairy now.   

Lisa 

Yeah, yeah. Blame it on the steroids.  

Ben B 

Yeah. You know, those those the steroids situation is that with those big high dose steroids, is that what we found over lots and lots of patients was that actually most patients didn’t get that much benefit. There wasn’t that much benefit and it wasn’t statistically significant. And then but they got the people that got steroids had, you know, more complications, particularly related to things like infection in the lungs and longer ICU stay and those sorts of things. And so that’s generally why we’ve pulled back from that. 

But yeah, there’s not actually been that much change in that 20-year period.  

Lisa 

Yeah. And I suppose Ben, I’ve got an idea of what happens. But for all of our listeners who don’t have much of an idea around spinal cord injury, can you explain all of the ins and outs in terms of what’s happened during your spinal surgeries that took place in here, discs, discs in there, or whatever they’ve done? 

Ben H 

As Ben just said, when I had mine done, they chiselled a big chunk of, bone off my hip, and then, is it on this side or that side?  

Ben B 

Your scar? I think the left, isn’t it?  

Ben H 

Yeah, I think it’s on the left. So, yeah, they go through the front and then, basically screw, because I was a C4/5 dislocation, so that’s now essentially been fused together. And so yeah, my C4 and C5 have been screwed together with a little bone from my hip.  

Lisa 

And so anyone who is listening going, what is a C4, C5, can you explain that?  

 

 

Ben H 

So that will be the so the cervical spinal cord is I was going to say probably the one you don’t want to break in your spine, but really you don’t want to break anything, do you? 

But, that’s the top. So it’s a C1, C2 is it down to 6 or 7?  

Ben B 

Seven. The cervical is the C part of it, so that stands for neck.  

Ben H 

So, if you think if it goes from 1 to 7, C4 / 5 is pretty high. 

Ben B 

And a person with a complete injury at a C4/5 level generally you’d call it, you’d say whether the person has a C4 complete injury or incomplete injury.  

Incomplete means and there’s different grades, but they have some function below those levels, whether it’s just sensory or some motor function or, you know, there might be some bowel and bladder sparing in some people, to their complete that means that they can that their C4 level works. but then nothing below it works. And so, you know, a complete injury at C4 at that C4 level, the, the nerve that, helps the diaphragm work, is invaded by the C3 four and five. And so that can lead to that, lung dysfunction and breathing problems, which is why early on they were saying to Ben’s dad that he might be on a ventilator for a long time, particularly if there had been some worsening and like progressing edema or swelling of the spinal cord up. 

But he got a, you know, actually a fair bit of recovery from that.  

Ben H 

And, but when like it was, it took probably over a month or so when I first had because like with the incomplete and complete a complete, it’s like when the spines have been completely severed. Whereas mine was dislocation. So it’s just a compression site, but for the first month I was essentially a complete C4 because like the swelling hadn’t died down yet. 

So yeah, I was I had no sensation below my nipples and elbows and had no movement below it. Like basically I could move my biceps a little bit, but that was it. And then slowly things came back.  

Lisa 

And is a month a fairly, standard, I suppose, for, for most spinal cord injury patients to get that idea of how mobile will I be into the future or is it something, you know, after a week or month, or is it only five years down the track? You’re like, oh, what do you know? I’ve got the use of my arms like I don’t. How does it work?  

Ben H 

Well for me, like the month was when things started to come back, but it wasn’t like, bang, everything’s back straight away. It was, I think they say two years and then like. And in those two years, like say as Tim said, like there were times where a lot would come back and then there’d be a plateau and then some other things would come back, and then there’d be another plateau. But it’s usually, by two years, what you’ve got back is like, there isn’t really much recovery after that, and it’s just what you’ve got. You just make stronger. Yeah.  

Lisa 

And Tim are you planning to move back over here sometime soon or are you staying in Boston? 

Tim 

Well, I have an American wife now.  

Lisa 

Oh that old chestnut 

Tim 

I might, I might be, too far gone at this point but, I’ll never say never that’s for sure. I, I really like working at Boston University right now. I, really like the infrastructure that I have to do the research that we’re doing and the, the funding that we’re able to attract to do the research, in the US has kind of, made it a bit more, appealing, for me at the moment. 

Lisa 

Yeah, for sure. From a research point of view, do see much, much difference in Australia compared to compared to where you are? I suppose I asked Ben a similar question in terms of how Australia is faring compared to the rest of the world with regard to spinal cord injury research.  

Tim 

Yeah, I think the biggest difference is just the money, the availability of the of the money here. 

Like there’s a lot more spinal cord injury foundations that exist that have, good continuing research funding, that can be applied for to support early career researchers. So people who, just graduated from their PhD or just starting their labs to kind of get them off the ground and kind of into this field, there’s, you know, federal funding through the NIH and the NSF. 

That’s quite good and, the kind of infrastructure in terms of starting your lab in the US and in Canada is, I feel like a little bit better than in Australia in terms of that initial support that you can get. So you can kind of get a lot more traction and, and kind of really establish yourself a bit more efficiently, I would say over here than you can in Australia. 

It’s not that we can’t. but I would say that the resources are made a lot more readily available to you when you get started.  

Lisa 

Okay. And in terms of, of a long-term goal or long-term vision for the work you’re doing, is it to get Ben up and walking or what? What is it exactly that I know curing spinal cord injury is sort of a a big a big bold statement. But if you were to explain it in a sentence or say, what would the goal be?  

 

 

Tim 

Yeah, that’s a, that’s a that’s a good question. I think walking is what people perceive as being the ultimate goal. But if you ask Ben what he would want to have back tomorrow, it may not be necessarily walking. And if you ask a lot of different patients their answers will vary as well. And usually it’s the severity of injury dictates what you’d want back. So folks are often like, well, I would really like my hand function to be back. You know, if you could help me with that, that’d be great. Or I’d really like you to help me out with this autonomic reflex. Yeah, that would be the thing that would would really make my life a lot better. 

And so the strategies that we’re, that we work on, I think if we are able to have any kind of functional gains back, even if they’re not ultimately complete a complete cure, but are, gains of function like that would be, that’ll be good. And so, ultimately the trajectory is demonstrate something in preclinical models progressing through larger animal species to really demonstrate safety and efficacy. 

And then hopefully, have one or maybe two shots at having something that can be progressed to clinical trials. That’s kind of a realistic perspective, I think, like you dedicate your career to this work, and you hope that something that you’ll do will progress through the clinical trials to give it a shot to help people. And you see, people in the spinal cord injury space have worked on spinal cord injury for, you know, 40 years who have had that one thing. 

And, and, and that’s kind of the capstone of their, their career. And so I’m realistic about that, that like, there may be one thing that that we’re able to get through in my time. And that’ll be an important contribution.  

Lisa 

Yeah. I think what you said earlier is a point worth repeating that people see Ben and I’s  wheelchairs and your, your, your one goal must be to walk again. 

Oh yeah. Yeah. Walking is overrated for for so many people. And I don’t want to speak for everyone here, but is often the little things, whether it’s hand function or something else. My eyesight not not always the walking. And I think, knowing that your researchers and, and you especially understand that’s really, really good to know.  

So guys, we have covered so much in this chat. 

Thank you all for your time from research, surgery, lived experiences, all the rest.  

We ask all the guests in this podcast, what about their life or about the disability or about the work is unexpected because we’re trying to break those stereotypes and stigmas that people have these certain assumptions about disability or spinal cord injury.  

But what about your life or about what you do is unexpected? 

Ben H 

Who’s going first?  

 

 

 

Ben B 

You go first.  

Ben H 

I think, for me, I was surprised with the amount of, people I’ve never met before coming up to me and telling me what an inspiration I am just for, for being somewhere like, 

Lisa 

 Just being out. Oh you’re so inspiring.  

Ben H 

I’m at the pub with my mates and a drunk guy goes. “Oh, good to see you out, mate”, sometimes I like to go back to the moment. “Why? What? Why shouldn’t I be here?” 

And then, kind of moving the conversation, pretty quickly, but. Yeah, just things like that. Yeah. and I think we spoke about earlier, oh, yesterday, you know, when people talk to my wife or your husband instead of us because oh, well, they might not be able to understand, but, you know. Yeah. then there was a suit shop I was going to for the wedding, and they, they were talking to Mel about how they could alter my suit. And, so we left there pretty quickly. But not only did they lose the business on my suit, they also lost the business for the five groomsmen suits as well. 

Lisa 

So, Yep. That’s it. The disability dollar can be powerful.  

Ben H 

That’s right. So it wasn’t just one. It was six suits that do the math on that. And yeah, have a bit more disability awareness and maybe you’ll keep the business.  

Lisa 

Yeah. Well said, you’re not not inspiring just for being out in public and going to the pub you’re your mates, was the other Ben being called inspiring just for being out and having a beer? 

Ben H 

They probably thought he was. 

Lisa 

And what about you Ben? What was unexpected? 

Ben B 

I think for me, what’s been an unexpected is just how my, Like, I didn’t set out to become a spine surgeon, and. But I think every time I’ve been faced with a decision and it’s the, you know, like, two decisions, it seems like every decision sort of led me that way, without me kind of even knowing it. 

And that’s, great, because I love what I do now, and I am, And it’s rewarding. and it’s great that I get to be involved, from when I was a 15 year old, seeing my friend and not really knowing what had happened to seeing going to the hospital on that first day and then the second day and then multiple days afterwards, spending all my time, oh, not all my time, but spending a lot of time going to rehab with Ben and then seeing him progress and live a full life. 

That’s what’s been unexpected. I wouldn’t have wouldn’t have thought that, you know, in that early period when we were all grieving.  

Lisa 

Yeah. Yeah. Of course. Now it must be, must be awesome for all of you to see him living, living the life he is now and having whatever expectations you had early on. But he’s clearly smashed them all. 

What about you, Tim? What about your life, your work or Ben’s life? Ben’s work, is unexpected? 

Tim 

So working in research, we search out the unexpected. I would say that any experiment that gives us an unexpected result that’s exciting for us, because that is. That means we we we learn something new. We we are able to follow a path that maybe we didn’t anticipate. 

And it often leads to to very exciting gains in the research. And so, we, we embrace the unexpected. And so I’d say that’s what we, I would say a lot of, a lot of the research we do is, is oftentimes unexpected. And that’s, that’s a that’s a good thing.  

Lisa 

Thank you all very much for your time today. 

It’s been great to have you in chatting, three very different perspectives. And best of luck with all of your research work, surgery, life and bring Mel in next time. She sounds awesome. 

Ben B 

Thanks, Lisa.  

Ben H 

Yeah. Thank you. I’ll try and get her a day off work for the next one.  

Tim 

Yeah, thank you so much. It was a privilege. 

Lisa 

Thank you very much, Tim, you can go to bed now.  

Ben H 

Don’t feel too bad for him. He makes me stay up till, like, 1130 doing meetings with the students. It is revenge. Thanks, buddy.  

Tim 

That was good. Thanks. Thanks for having me. Appreciate it.  

 

Ben H 

Enjoy your last day in Austria. 

Tim 

Yeah. I’m, getting up in, a couple of hours to give a presentation. 

Thanks so much. I really do appreciate it. And enjoy the rest of your day.  

Lisa 

We, definitely got the accent.  

Ben H 

Some of the words, even when it’s like when he does his research on stuff that looks like jello. I wanted to jump in and be like. It’s called jelly here, mate. 

(laughs) 

End  

 

sed doors. I think, you wouldn’t want me on the pod. 

Lisa 

So, Ben, surgeon Ben. When you’ve got patients and family’s who’ve newly acquired a spinal cord injury, do they tend to have that reluctance to be all over disability or, I suppose humour is not really in their repertoire just yet, but how how do you find them?  

Do you have to sort of be a surgeon and a psychiatrist at the same time? 

Ben B 

I think early on, very early on, most people are just grieving, with their injury. Particularly if it’s a complete injury or, you know, or, or the patient, if it’s a family member, the patients, you know, ventilated in, in ICU and then unable to communic Ben H 

Yeah, and I’ll just jump in Mel’s defence. She had two cousins with Duchenne Muscular Dystrophy and Muscular Dystrophy growing up. So she’s been around disability her whole life.  

Lisa 

And she’s all over the dark humour and the really inappropriate jokes that we make.  

Ben H 

The things we say behind clo ate and that sort of thing. I don’t think it really benefits them to give them all the information early on because they’re in, you know, the early stages of grief. 

So afterwards, the spinal injuries unit does a lot of work, and they have, you know, the medical staff and the nursing staff and all the allied health there to assist with those sorts of things. Because, you know, just as like we said before, everyone’s an individual and everyone has an individual rehabilitation course, and some people get no improvement and other people will get lots of improvement and completely surprise you.  

That’s why it’s difficult to discuss prognosis with people early on. But yeah, it takes a little while to build that, you know, you’ve got to get over those early stages of grief and get back to a normalcy before you can have that humour, I think.  

Lisa 

Yeah. Yes. Oh, I guess we do have listeners who are in allied health in the medical professions generally, and I’m wondering what some advice you’d give to them if they do have a, a patient with doesn’t have to be a spinal cord injury necessarily. 

But I’m thinking back to my own recovery. And they all spoke to me like it was the end of the world. Going to a funeral, life will never be the same. And I do understand everyone’s different and there is the need to not say, ‘it’s going to be wonderful, you’re going to go out there, you’ll be at the Paralympics’, but at the same time not to just be negative.  

Ben B 

Yeah. I think, I think it’s very hard for the for all those people. They are often regularly going through grief with each patient because, they’re all empathetic people, you know, that’s why they’re in that job. And they tend to feel what those people are feeling, and go through it multiple times a day, multiple times a year, through different stages with each person. I think probably the biggest thing is to really reiterate that, you know, life isn’t over. Let’s move on but not move on. That’s a hard thing to say to someone early on. But you know, focus on your abilities, focus on what you can do. For Ben, he’s an intelligent, funny, person. And I think, you know, it’s great that, he eventually came to realize that and put himself out there more. And, you know, if he hadn’t have done that, if he hadn’t done that earlier, then he might not have, come to meet Mel. And she’s been such a great person in his life, so it’s not like that we should regret, you know, his early years when he wasn’t doing that as much.  

But once he did do that and he’s opened up in the last 5 to 10 years, he’s really blossomed. And definitely part of that in last few years has been because he’s had that support of a close partner, and he’s realized that he’s enough to start living a full life. 

And, it’s been really great to watch that in the later period. But so just coming back to you, you know, it’s easier for me to say that when I’m speaking to people because I know what’s at the end. But you’ve got to get through that early period and kind of move towards getting back to progressing with your life and living a full, fulfilled life. And the earlier you can do that, the happier you’ll be. 

Lisa 

Yeah, I think that’s great. You’ve got a really good understanding of both sides of the coin, even though you haven’t got that full on lived experience. It’s close, really, really close. And I think that would be so important for one of your patients to be able to hear.  

I can hear that understanding your voice and do the things you’re saying. I’m like, he gets it. He really, really gets it. And most of my surgeons have been wonderful, but you can really tell the ones that just get it from the point of view of a of a patient, I suppose.  

I’ll just have to rate my notes here, but I haven’t been. I have to ask you some questions. Feel free to jump in. I didn’t tell you at the beginning, by the way. Feel free to jump in at any stage.  

Ben B 

It’s hard to ask him questions because he sort of takes over for the next 15 minutes. 

Ben H 

That’s a bit of the pot calling the kettle black! 

Tim 

(laughing) I’m cognizant of that. I didn’t want to dominate any conversation.  

Lisa 

So your in your I’ll call it the research bubble at the moment. During the really amazing work, do you have much to do with patients with spinal cord injury through that time?  

Tim 

Yeah. So through Wings for Life we definitely do. So, at this conference we have people who are working for the foundation or who are patient advocates who come to the conference, who talk with researchers, to understand the research, to help set priorities and goals for the research. So, through the foundation, support that we’ve had for our research, we’ve definitely interacted with a lot more people with spinal cord injury. 

Obviously, I interact with Ben a lot and Ben’s on our research team, actually. So one of the research grants that my lab was awarded from the Paralyzed Veterans of America, it’s a foundation that’s, it’s a non-government organization, in the US, that supports veterans’ health. And they have grants for researchers working on spinal cord injury. 

But there’s one important stipulation that they make for their grantees is that you have to have someone with a spinal cord injury on your team in order to be able to help, set priorities to educate the researchers, on what it’s like to live with a spinal cord injury and help calibrate the goals of the research. 

And I think that’s been really important for my team, because a number of the students that I have working for me, in the lab or working with me in the lab, have never really been exposed to spinal injury. They’re interested more in the kind of strategies that we’re employing from a more intellectual standpoint, from the engineering standpoint or the biomedicine standpoint. 

And for many of them, working on spinal cord injuries, that means to kind of study those. And for some, like myself, it’s more personal, right? It’s more about, trying to progress that, that research forward. And I think they get that a little bit more by interacting with Ben and being able to see why we do the research that we’re doing and why we’re taking the approaches that we’re taking. 

So, I think that should be something that most foundations who support, spinal cord research or, or any kind of patient advocacy group, any kind of, foundation supporting research across, across biomedicine. And they should be encouraging, with lived experience, to be involved in the research, to kind of have that dialog back and forth between the researchers who are passionate about trying to solve the problem, but also with the patients who, could help guide their efforts. 

Lisa 

Yeah, 100%. I think it’s really good that have that in place. I know we’re doing some work with Griffith Uni at the moment. talking to all of that researchers and academics who perhaps don’t have any experience with disability, there’s a, a bunch of us who were on a, on a committee to, to work with those academics to shed some light on, on areas they don’t necessarily know about. 

But your research is so, so exciting and like, sign me up for the brain injury part of it when that that becomes available. But how far do you think you are from human trials and developing it further?  

Tim 

Yeah, that’s I guess a question that we get all the time. Right. And I kind of understand the, the, the urgency, for what we’re working on, and what everyone’s working on in this space. 

The stuff that we’re working on is a fair way away from being a clinical therapy. There are other strategies that other approaches, many of which were developed 20 years ago, which are only now just being explored in clinical trials. And there’s definitely this long process that it takes to kind of get things through from the kind of foundational preclinical insight in this new discovery and something exciting to actually making it through for clinical therapy for patients. 

And it can be a little frustrating, but that, unfortunately, is the way the process goes. Funding helps speed that up. But the reality is it takes a long time. It’s a long path. We work in the pre-clinical space with translation in mind. So, we’re focused on trying to test our strategies in animal models in a way that we could scale clinically. 

But we’re not really at a point where we’re getting the type of repair outcomes that you could say, “Yes, this is at a stage where it’s going to be very, very exciting for human patients”. And there’s a risk of trying to translate too early because if you go too early, you’re kind of committed to what you’re the intervention that you’re trying. 

And that’s a lot of money spent and a lot of time and investment and energy, to try and get it over the finish line. And if it’s kind of a little bit undercooked, the outcome may not be what you’re looking for. So, I’m very cognizant of that. Having seen some of the, the attempts of translation previously, I, I really want to be at a point where we’re getting really robust outcomes in a variety of different severities of injury and animal models, and we’ve got a number of readouts that suggest that this is something worth pushing forward. 

And so I wish I had something right now to be able to be able to translate, but, we’re just not quite there yet.  

Lisa 

Ben, were you going to say something?  

Ben B 

No, I was just laughing because Ben was giving me the eye like ‘see….”  

Ben H  

I did not. 

Lisa 

I can’t see very well from across the desk. 

Ben H 

I think it was a very diplomatic answer from Tim about some of the other research that’s going on. Would that be correct? Timothy?  

Tim 

Well, what do you mean by that, Ben?  

Ben H 

Things being rushed.  

Lisa 

I think I have a fair idea of what he’s talking about. And I’m. As much as I’m signing up for the for the human trials, I would want to have known there had been significant, trials in animals and in other areas before I had anything injected into my head. 

 

Tim 

Exactly, and when you have a personal interaction with someone, with this type of injury, I feel like you’re even more cautious, right? Because you’re like, this could be something that they’d be administering to Ben. Would I want to have Ben, you know, be treated with this intervention? And if my answer is not 100% yes, then that’s something that’s not quite ready for me. 

Lisa 

Wait for the tick from Tim before you go ahead with anything.  

Ben H 

I remember, would have been maybe ten years ago. There are few people in Australia, like, trying to raise money to go over to India, to get, they were doing some Stem so injections there and basically there’s no science to it. It’s like, let’s inject some stem cells into your spine and we’ll see what happens. 

And I think, quote unquote, Tim said to me, if you’re ever thinking about doing that, instead pay the money for me to fly over and punch you in the face to knock some sense into you. Because I think there was some pretty bad stories, like basically teeth were forming in the spinal cord or just massive tumors because, you know, there’s it’s a it’s a, what’s the word? 

Tim 

Teratoma.  

Ben H 

Yeah. 

Tim 

Yeah. If you inject certain stem cells that aren’t committed to certain types of cells, they can turn to any cell in the body. And there’s a number of clinical cases where patients have received treatments in, in Russia and India, and they present at their hospital in the US or in, in Australia. 

And they are starting to suffer deleterious effects. So, they’re starting to lose function. And because of these interventions, not really being ready for prime time and the kind of, you know, complications that go with that.  

Ben H 

And then there’s the other thing; these people may not have been doing rehab before so they go over, they get this thing and then they start doing the rehab and they start seeing some progress and say, maybe if you’d just been hitting the gym more regularly, that might have happened anyway, right? 

Lisa 

Yeah, yeah. So Ben, our surgeon. Ben and Tim, is there any. You’ve obviously got very different areas of expertise, but is there any overlap? Ben, are you seeing some of Tim’s discoveries or anything like that overlapping with the sort of work you’re doing?  

 

Ben B 

Not really. At this early stage, most of the research on the spinal, implemented research on spinal cord injury is more about sort of trying to stop that scarring process by administering some sort of medication. 

So many years ago, it was high dose method. Which is a steroid which is sort of been debunked through some big trials. There was one trial that sort of, you know, it was said it was worthwhile and then sort of went back the other way. And there’s a few other sort of early stage medications that you can give kind of own presentation, to try and reduce the amount of scarring that happens. 

And that’s about as far as we are to any sort of therapeutic, intervention that could be made at the beginning of a of a spinal cord injury. From my point of view, my, my role in a spinal cord injury is to stabilize an unstable spine or decompress a spinal cord or both, as early as possible. 

So that there’s not secondary insult and injury. And then often to make the ability to, be nursed and, and function better because if you’ve got an unstable fracture, even if you are a complete, even if you have a spinal a complete spinal cord injury. It’s, you know, an unstable fracture is not something you can easily live with because your trunk is not stable.  

And that sort of thing. So, yeah. more on, very practical, side of it rather than, any sort of, crossover. But certainly, that’s part of the reason that I’m keeping my foot in the door and, and working in this area. Because if that does come up, become available, I’d love to be involved, you know.  

Lisa 

Excellent. And you don’t have to be biased, but how does Australia fare compared to the rest of the world around this research? I submit this question for you as well, Tim. There’s research and really wonderful things happening globally, but how’s Australia faring?  

Ben B 

I’ll probably defer that question to Tim. Regarding the research. 

Tim 

Yeah. So, I’ll just add to in relation to the research that I’m doing that is not quite ready for prime time yet. We’re really focused on these reparative regenerative strategies, but there’s a lot of, approaches that are showing really good promise in certain types of incomplete injuries. So like electrical stimulation is having, really, really, exciting outcomes in, in recovery of motor function enhancement and lower limbs. 

Vagus nerve stimulation for, for hand function is something that that I heard about today at this conference. That was really exciting research coming out. And in Australia, there’s a number of folks working in that rehabilitation space and the stimulation space that, doing clinical trials that are progressing that research forward and then making a strong contribution, companies, that have kind of started out of research coming from Australia, like, the one that’s, that’s getting a bit of, press of late is, synchrotron I think it is called, coming out of University Melbourne, doing the, the, the kind of brain computer interface, device that they’ve developed for, being able to, to record and actually help with function, with, with people with, with disabilities, which is quite exciting. And, you know, there’s a number of companies working in that brain computer interface kind of space. It’s quite an exciting space right now. so yeah, it’s like in Australia, people are making contributions. 

I would say that Australians, do research in spinal cord injury, and many of them are not in Australia. So there’s a number of people here at this meeting who are from Australia that are not based in Australia. So people who are based in Canada, based in the US for various reasons, in terms of being able to, to get access to funds to, to run their labs and do their research. 

But there are Australians working on this problem all over the world. And I think that’s a pretty, pretty important thing to remember. Just because you’re not geographically located in Australia doesn’t mean you’re not, an advocate for Australian research.  

Lisa 

Yeah. For sure. And, Ben, are you seeing much of a difference from what we’re doing here in Australia compared to the rest of the world? 

Ben B 

In terms of, the sort of outcomes we get from, surgical stabilization and then rehabilitation point of view. You know, the healthcare system in Australia is first class in, in the world. It’s, you know, universal access you get excellent quality care. That’s people who are well trained, pretty well funded. That’s why it’s always in deficit. And then people who care a lot. And so, I think that we get very good outcomes. 

Could we do better? Always. And that’s probably what everyone’s striving to do. and that costs money, time, people, all those sorts of things. So, and then with respect to that and, and the research side of it is that we just need to keep like, we can’t stop researching because we need to continue to improve the outcomes that we can get, but for outcomes that we do get and, and how much we, you know, the quality of the work that it’s top notch. 

Lisa 

So are you seeing much of a change in terms of what they did years ago from surgery point of view to what they’re doing now? I’m thinking back to my heart surgeon, for example, the first round he did surgery. At the time it was, well, world class. And now we’re doing this, made the news…then, eight years later, I think it was I did it again. 

It’s like, oh, I don’t believe we did that. That’s old fashioned. But is, is there much of a change in terms of the surgery you’re doing now compared to what they would have done maybe a decade ago or something?  

Ben B 

Not really. There’s probably just incremental differences in quality of biomaterials that we use, the types of stabilization. I mean, often we used to, and I think Ben has this is we used to just take a piece of the iliac crest as the cage or the filler for where the between the two bits of fractured bone and then put a plate on the front.  

Ben H 

Yeah. I’ve got a big scar on my hip. Got the chop, the chisel.  

 

Ben B 

Yeah. So essentially fashioned a cage to put into the intervertebral disc. now, we most often use a synthetic cage with a bit of allograft bone and maybe some bone from the patient as well, but not big. you know, I think, essentially, though, the surgical, the surgical difference is, is very minimal. 

And, you know, 20 years ago, I don’t think Ben did get, steroids, but that was pretty.  

Ben H 

Yeah I did, that’s why my back is so hairy now.   

Lisa 

Yeah, yeah. Blame it on the steroids.  

Ben B 

Yeah. You know, those those the steroids situation is that with those big high dose steroids, is that what we found over lots and lots of patients was that actually most patients didn’t get that much benefit. There wasn’t that much benefit and it wasn’t statistically significant. And then but they got the people that got steroids had, you know, more complications, particularly related to things like infection in the lungs and longer ICU stay and those sorts of things. And so that’s generally why we’ve pulled back from that. 

But yeah, there’s not actually been that much change in that 20-year period.  

Lisa 

Yeah. And I suppose Ben, I’ve got an idea of what happens. But for all of our listeners who don’t have much of an idea around spinal cord injury, can you explain all of the ins and outs in terms of what’s happened during your spinal surgeries that took place in here, discs, discs in there, or whatever they’ve done? 

Ben H 

As Ben just said, when I had mine done, they chiselled a big chunk of, bone off my hip, and then, is it on this side or that side?  

Ben B 

Your scar? I think the left, isn’t it?  

Ben H 

Yeah, I think it’s on the left. So, yeah, they go through the front and then, basically screw, because I was a C4/5 dislocation, so that’s now essentially been fused together. And so yeah, my C4 and C5 have been screwed together with a little bone from my hip.  

Lisa 

And so anyone who is listening going, what is a C4, C5, can you explain that?  

 

 

Ben H 

So that will be the so the cervical spinal cord is I was going to say probably the one you don’t want to break in your spine, but really you don’t want to break anything, do you? 

But, that’s the top. So it’s a C1, C2 is it down to 6 or 7?  

Ben B 

Seven. The cervical is the C part of it, so that stands for neck.  

Ben H 

So, if you think if it goes from 1 to 7, C4 / 5 is pretty high. 

Ben B 

And a person with a complete injury at a C4/5 level generally you’d call it, you’d say whether the person has a C4 complete injury or incomplete injury.  

Incomplete means and there’s different grades, but they have some function below those levels, whether it’s just sensory or some motor function or, you know, there might be some bowel and bladder sparing in some people, to their complete that means that they can that their C4 level works. but then nothing below it works. And so, you know, a complete injury at C4 at that C4 level, the, the nerve that, helps the diaphragm work, is invaded by the C3 four and five. And so that can lead to that, lung dysfunction and breathing problems, which is why early on they were saying to Ben’s dad that he might be on a ventilator for a long time, particularly if there had been some worsening and like progressing edema or swelling of the spinal cord up. 

But he got a, you know, actually a fair bit of recovery from that.  

Ben H 

And, but when like it was, it took probably over a month or so when I first had because like with the incomplete and complete a complete, it’s like when the spines have been completely severed. Whereas mine was dislocation. So it’s just a compression site, but for the first month I was essentially a complete C4 because like the swelling hadn’t died down yet. 

So yeah, I was I had no sensation below my nipples and elbows and had no movement below it. Like basically I could move my biceps a little bit, but that was it. And then slowly things came back.  

Lisa 

And is a month a fairly, standard, I suppose, for, for most spinal cord injury patients to get that idea of how mobile will I be into the future or is it something, you know, after a week or month, or is it only five years down the track? You’re like, oh, what do you know? I’ve got the use of my arms like I don’t. How does it work?  

Ben H 

Well for me, like the month was when things started to come back, but it wasn’t like, bang, everything’s back straight away. It was, I think they say two years and then like. And in those two years, like say as Tim said, like there were times where a lot would come back and then there’d be a plateau and then some other things would come back, and then there’d be another plateau. But it’s usually, by two years, what you’ve got back is like, there isn’t really much recovery after that, and it’s just what you’ve got. You just make stronger. Yeah.  

Lisa 

And Tim are you planning to move back over here sometime soon or are you staying in Boston? 

Tim 

Well, I have an American wife now.  

Lisa 

Oh that old chestnut 

Tim 

I might, I might be, too far gone at this point but, I’ll never say never that’s for sure. I, I really like working at Boston University right now. I, really like the infrastructure that I have to do the research that we’re doing and the, the funding that we’re able to attract to do the research, in the US has kind of, made it a bit more, appealing, for me at the moment. 

Lisa 

Yeah, for sure. From a research point of view, do see much, much difference in Australia compared to compared to where you are? I suppose I asked Ben a similar question in terms of how Australia is faring compared to the rest of the world with regard to spinal cord injury research.  

Tim 

Yeah, I think the biggest difference is just the money, the availability of the of the money here. 

Like there’s a lot more spinal cord injury foundations that exist that have, good continuing research funding, that can be applied for to support early career researchers. So people who, just graduated from their PhD or just starting their labs to kind of get them off the ground and kind of into this field, there’s, you know, federal funding through the NIH and the NSF. 

That’s quite good and, the kind of infrastructure in terms of starting your lab in the US and in Canada is, I feel like a little bit better than in Australia in terms of that initial support that you can get. So you can kind of get a lot more traction and, and kind of really establish yourself a bit more efficiently, I would say over here than you can in Australia. 

It’s not that we can’t. but I would say that the resources are made a lot more readily available to you when you get started.  

Lisa 

Okay. And in terms of, of a long-term goal or long-term vision for the work you’re doing, is it to get Ben up and walking or what? What is it exactly that I know curing spinal cord injury is sort of a a big a big bold statement. But if you were to explain it in a sentence or say, what would the goal be?  

 

 

Tim 

Yeah, that’s a, that’s a that’s a good question. I think walking is what people perceive as being the ultimate goal. But if you ask Ben what he would want to have back tomorrow, it may not be necessarily walking. And if you ask a lot of different patients their answers will vary as well. And usually it’s the severity of injury dictates what you’d want back. So folks are often like, well, I would really like my hand function to be back. You know, if you could help me with that, that’d be great. Or I’d really like you to help me out with this autonomic reflex. Yeah, that would be the thing that would would really make my life a lot better. 

And so the strategies that we’re, that we work on, I think if we are able to have any kind of functional gains back, even if they’re not ultimately complete a complete cure, but are, gains of function like that would be, that’ll be good. And so, ultimately the trajectory is demonstrate something in preclinical models progressing through larger animal species to really demonstrate safety and efficacy. 

And then hopefully, have one or maybe two shots at having something that can be progressed to clinical trials. That’s kind of a realistic perspective, I think, like you dedicate your career to this work, and you hope that something that you’ll do will progress through the clinical trials to give it a shot to help people. And you see, people in the spinal cord injury space have worked on spinal cord injury for, you know, 40 years who have had that one thing. 

And, and, and that’s kind of the capstone of their, their career. And so I’m realistic about that, that like, there may be one thing that that we’re able to get through in my time. And that’ll be an important contribution.  

Lisa 

Yeah. I think what you said earlier is a point worth repeating that people see Ben and I’s  wheelchairs and your, your, your one goal must be to walk again. 

Oh yeah. Yeah. Walking is overrated for for so many people. And I don’t want to speak for everyone here, but is often the little things, whether it’s hand function or something else. My eyesight not not always the walking. And I think, knowing that your researchers and, and you especially understand that’s really, really good to know.  

So guys, we have covered so much in this chat. 

Thank you all for your time from research, surgery, lived experiences, all the rest.  

We ask all the guests in this podcast, what about their life or about the disability or about the work is unexpected because we’re trying to break those stereotypes and stigmas that people have these certain assumptions about disability or spinal cord injury.  

But what about your life or about what you do is unexpected? 

Ben H 

Who’s going first?  

 

 

 

Ben B 

You go first.  

Ben H 

I think, for me, I was surprised with the amount of, people I’ve never met before coming up to me and telling me what an inspiration I am just for, for being somewhere like, 

Lisa 

 Just being out. Oh you’re so inspiring.  

Ben H 

I’m at the pub with my mates and a drunk guy goes. “Oh, good to see you out, mate”, sometimes I like to go back to the moment. “Why? What? Why shouldn’t I be here?” 

And then, kind of moving the conversation, pretty quickly, but. Yeah, just things like that. Yeah. and I think we spoke about earlier, oh, yesterday, you know, when people talk to my wife or your husband instead of us because oh, well, they might not be able to understand, but, you know. Yeah. then there was a suit shop I was going to for the wedding, and they, they were talking to Mel about how they could alter my suit. And, so we left there pretty quickly. But not only did they lose the business on my suit, they also lost the business for the five groomsmen suits as well. 

Lisa 

So, Yep. That’s it. The disability dollar can be powerful.  

Ben H 

That’s right. So it wasn’t just one. It was six suits that do the math on that. And yeah, have a bit more disability awareness and maybe you’ll keep the business.  

Lisa 

Yeah. Well said, you’re not not inspiring just for being out in public and going to the pub you’re your mates, was the other Ben being called inspiring just for being out and having a beer? 

Ben H 

They probably thought he was. 

Lisa 

And what about you Ben? What was unexpected? 

Ben B 

I think for me, what’s been an unexpected is just how my, Like, I didn’t set out to become a spine surgeon, and. But I think every time I’ve been faced with a decision and it’s the, you know, like, two decisions, it seems like every decision sort of led me that way, without me kind of even knowing it. 

And that’s, great, because I love what I do now, and I am, And it’s rewarding. and it’s great that I get to be involved, from when I was a 15 year old, seeing my friend and not really knowing what had happened to seeing going to the hospital on that first day and then the second day and then multiple days afterwards, spending all my time, oh, not all my time, but spending a lot of time going to rehab with Ben and then seeing him progress and live a full life. 

That’s what’s been unexpected. I wouldn’t have wouldn’t have thought that, you know, in that early period when we were all grieving.  

Lisa 

Yeah. Yeah. Of course. Now it must be, must be awesome for all of you to see him living, living the life he is now and having whatever expectations you had early on. But he’s clearly smashed them all. 

What about you, Tim? What about your life, your work or Ben’s life? Ben’s work, is unexpected? 

Tim 

So working in research, we search out the unexpected. I would say that any experiment that gives us an unexpected result that’s exciting for us, because that is. That means we we we learn something new. We we are able to follow a path that maybe we didn’t anticipate. 

And it often leads to to very exciting gains in the research. And so, we, we embrace the unexpected. And so I’d say that’s what we, I would say a lot of, a lot of the research we do is, is oftentimes unexpected. And that’s, that’s a that’s a good thing.  

Lisa 

Thank you all very much for your time today. 

It’s been great to have you in chatting, three very different perspectives. And best of luck with all of your research work, surgery, life and bring Mel in next time. She sounds awesome. 

Ben B 

Thanks, Lisa.  

Ben H 

Yeah. Thank you. I’ll try and get her a day off work for the next one.  

Tim 

Yeah, thank you so much. It was a privilege. 

Lisa 

Thank you very much, Tim, you can go to bed now.  

Ben H 

Don’t feel too bad for him. He makes me stay up till, like, 1130 doing meetings with the students. It is revenge. Thanks, buddy.  

Tim 

That was good. Thanks. Thanks for having me. Appreciate it.  

 

Ben H 

Enjoy your last day in Austria. 

Tim 

Yeah. I’m, getting up in, a couple of hours to give a presentation. 

Thanks so much. I really do appreciate it. And enjoy the rest of your day.  

Lisa 

We, definitely got the accent.  

Ben H 

Some of the words, even when it’s like when he does his research on stuff that looks like jello. I wanted to jump in and be like. It’s called jelly here, mate. 

(laughs) 

End  

 

Episode 9 – Tourism with Lindsay Nott   

Lisa 

Are you sick of the same old disability stereotypes? We were told, and we did something about it. Welcome to. That was unexpected. The Disability Lifestyle podcast for everyone, brought to you by care and hosted by me, Lisa Cox. Join our amazing guests as we delve into topics that don’t often hit the headlines. So let’s do this. Prepare for the unexpected. 

If you low vision like me or have other accessibility requirements, check out our show notes. Before we get started, we’d like to acknowledge the traditional owners of land on which we record. We pay respects to their elders, past, present, and emerging.  

Lindsay Nott. It is awesome to have you in the studio today. You’ve been a mate of mine for many, many years. So could you start by just telling me listeners a little bit about yourself? 

Lindsay 

Yeah, thanks for inviting me along today. I’m really looking forward to our little chat. My name is Lindsay. I have a high level spinal cord injury. I get around on four wheels instead of two legs now. Been traveling, working, enjoying life, getting out there, being a bit of an advocate for people with disabilities and like sharing my journey as well. 

And yeah, having a chat to people like yourself and making things better. 

Lisa 

Excellent. We were talking today about tourism, and you’ve probably traveled more than a lot of the able bods that I know. So it’s really good to have you here chatting about tourism. And I know I’ve had breakfast and coffee many times and had chats about all sorts of things, accommodation, tourism, the transport, those sorts of things. I will be delving into some of those today, but for our listeners who maybe don’t know what a high level spinal cord injury is, explain that to us.  

Lindsay 

For me, we’re all unique. Everyone who has a spinal cord injury is unique. No injury is the same. Even though you might have an injury at the same level, at the side effects are all different for everybody. So for mine is at around C4, C5, and for the people who are listening at home, you put your finger at the back of your neck where the hairline is. That’s around the same level as my injury. It’s incomplete. So I have feeling throughout my body. It’s abnormal feeling. It’s, it’s impaired from the nipple line down. And so it’s affected in that respect. Can’t move my legs, can’t wrap my arms properly. My hand function. Limited. Limited shoulder movement as well. So I just work on what I’ve got for that. 

I need a wheelchair to get around in, so it’s a power driver’s chair that I use to maneuver around. Yeah, use a mobile hoist to transfer in and out of bed and a shower chair. And have support workers to take my personal care as well. Otherwise, I’d be stuck in bed and never get out again. 

 

Lisa 

Shout out to support workers. Thanks for explaining all of that. And you’ve obviously got a lot more to think about when you go traveling than, than some people and not just even some people with disabilities. Some people need very, very little, if anything, in terms of things I need to travel, but you need quite a lot. 

So can you take us through just some of the things that you need or that you pack? 

Lindsay 

I do travel with a lot of gear and it’s increased over the years from when I first started traveling to now, back in the day, I went with a backpack and, support workers are or anyone that was helping out or able to assist. And I would hire a hoist and a shower chair. 

Support people would transfer me manually. Which was great because you don’t need all the extra equipment. Now I’m traveling with a shower chair that goes inside a suitcase. I have a hoist which separates into two bags. I have a medical bag. I have incontinence products I need to carry as well as in before I get to having my own clothes and just the daily equipment that you need to travel with as well. 

So and then you add in the support workers suitcases and backpacks and all the other things that you need to travel to be comfortable as well. So there’s quite a bit of luggage that you take around. 

Lisa 

And despite all of that, you know, like I said before, you travel a lot more than most people. And I say, what sort of places have we been to and what are your favourites? 

Lindsay 

I started out small. I went down to a ski trip. And then I expanded out. I had some great knowledge, great advice passed on to me from my physio, and he got to know me in rehab, and he knew that I like traveling. And he said to me, travel where the Olympics are being and the reason for that was because you have the Paralympics, you always have the Olympics and the Paralympics follow two weeks later. 

So you know they are going to have some sort of accessibility accommodated for the tourism and also for the athletes as well. And everyone that participates. So I looked into that and then took on his advice and got a mobile shower, shower commode so I could go and do that. But I also travel domestic and I’ve traveled overseas, so it’s been great having those and having those adventures and being through Queensland in the state and New South Wales and Victoria, Western Australia, and then headed over to parts of America, and would like to one day get to Europe and going to Singapore soon. 

 

Lisa 

Singapore’s awesome because there is a heap of underground air conditioned not a lot of hills, but it’s just me. So you and I have very different disabilities, but in a similar way, we need to travel with someone and we also carry a suitcase of equipment with us. But I know that we’ve spoken in the past about checking into a hotel, and I check in with my husband and they often think he is my carer. They say, we’ll give you two single beds. But it’s kind of the opposite for you because you’re checking with the carer.  

Lindsay 

Yeah, absolutely. Checking into our hotel, finding a hotel that can accommodate my requirement is really hard. And it is frustrating, but it takes a lot of time and effort to get to that part. And it’s always been the way we can give you a rolling shower. And like you said, a double bed or a king bed. It’s like, nah, we need two single beds because we’re not sharing and we need to be able to have that room to get around and I can always it’s always been a struggle to find those rooms that don’t make it easy to do. 

And I don’t know why, because we spend a lot of money and we need to be comfortable when we travel. 

Lisa 

I think the key there is assumption just never assuming that the other person with someone who has disability is a resident, that husband, or just ask and don’t assume so in a hotel room. I know one of the things that irks me like, yes, it’s accessible and you get in there and there’s just a ramp at the front door, but if you want to have a shower, go to the toilet and forget about it. 

Lindsay 

Well, the other part too is they also offer, a rollaway bed or a little pullout bed for this, for your support worker or a partner or whatever it is. It’s like, no, I paid money for this room. We deserve to have two beds. Yeah, I don’t know why we can have two beds.  

Lisa 

Yeah, it’s quite an easy thing to do. So what are some of the other I suppose, really specific things. And I’m, I’m asking because if there’s maybe a hotel person listing like right, what can we do. One of the solutions. What would you like to see? 

Lindsay 

Be up front. Be honest with everybody but also advertise it. It starts with knowledge at the front counter of staff when you talk to them on the phone, when you look at their website. Because we now live in an age of technology where we’re always on our phones, we’re on a computer of some kind, and you’re able to go and do a lot of research. 

So somebody could go and book a hotel room that doesn’t have a disability, find out exactly what’s going on, and within probably 20 minutes, they can book a room, a week or two and flights all within an hour and a couple of hours. They can have it all done. Whereas when I need to travel, I need to go look at their website. 

But their website doesn’t have any information about the accessible rooms, photos showing the room of a rolling shower, the width of the front door, how much room is in there? Like how much clearance is beside a bed and the wall? The clearance height, all those sorts of things. That makes it even harder. So then you have to go and contact the hotel, find concierge, or find someone in reception to talk to, email them, make a phone call, send photos asking information about the measurements, getting all that information back. 

That could take a week just to get the correct information back and forth. 

Lisa 

Yeah, we’ve had that for sure. Getting photos of especially in the bathroom for me personally is on the rails are the rails, all those sorts of things. But I know you need a lot more in terms of, heights and beds for, for hoists and those sorts of things. So when you travel, are you fairly loyal to a certain hotel chain or anything like that based on what they, what they do, how well they do accessibility? 

Lindsay 

I would love to be able to do that and be loyal to them and have reward points and things like that. That would be fantastic because you could build those points and use them up. But the reality is you. I’d like to go somewhere different every time. If I went back to say, New York, I’d love to get back to the same hotel there because that was unreal. 

And the staff. 

Lisa 

Which one was at give them a shout out. 

Lindsay 

The Westin in Times Square they were unreal. I got to do whatever I want. They made it happen. They went above and beyond which just made the trip. It just made the trip even better. Like, I’d love to have that option where you could be have a frequent flier points type of thing with a certain brand of hotel, but if you’re traveling somewhere new each time, you don’t have that luxury. You have to find a hotel that can accommodate you and work with that brand at the time. 

Lisa 

Yeah, like I know every time I go to Sydney, there’s a certain hotel I stay in, and that’s because I’ve been saying there for ten years, guaranteed that it will be accessible. I can find my way around if my husband or someone isn’t with me. And it’s just awesome. And I wish I had that in other places as well, because I’m home. 

It’s terrifying when I go to a new a new place and just not knowing what to expect, will I be able to have a shower, etc. because the access isn’t upfront like you said. 

Lindsay 

So there is a workaround for that. If you got to the hotel gym and have a shower in the accessible shower in the gymnasium area. 

Lisa 

Never thought about that. 

Lindsay 

Think outside the square, Lisa. Improvise, adapt and overcome. 

 

 

Lisa 

True, true. I’ve got a bit used to that, but I need to take a bit of that on board. So what advice would you have for travelers with a disability in your sort of situation? Because like we said before, everyone with a disability, different needs when they’re traveling, some people just walk in and walk out and it’s no issue. But you have a few a few more things going on. So people who are similar to yourself with disabilities, who have hoists and travel with tonnes of equipment. 

Lindsay 

Don’t give up. It’s hard work. I often go, why in the world am I doing this? But in the end it works out well because you do the research. You get to know what’s going on, know your rights, have all your documentation, emails, everything like that. Be prepared and start your traveling early by doing little trips like maybe do a day trip, go and do a yeah, I if you based in Brisbane, go to the Gold Coast for a weekend or to a stay vacation in Brisbane and just get to know what’s going online on the way, or jump in and go the whole hog and go overseas and do it in one big adventure, and you’ll learn a lot that way. I learned a lot when I did my first ski trip and got to know what were, I like going on an airline for the first time. And there was a guy at the gym. We didn’t have Google back then, and we I would chew his ear off every day for about three months on how we did this. 

How do I get on the plane? How do we do this? When do we go at the ski field? How do we get transferred everything like that. Whereas now you can look that up and find that information. But it would also be contacting the hotel that you want to find out more information about contacting the taxi companies, contacting the transport services, whatever asset you need today, special handling dangerous goods for your batteries on your wheelchair. 

Going to theme park, say Disneyland in America or going to Dreamworld on the Gold Coast and things like that. You want to go snorkeling? Depending on your level of injury, do you want to go hiring cars and traveling around, or you want to? Whatever it is you want to do, make a list. Work through it, contact everybody. 

Keep that information. I put it into an Excel document. Find out what requirements do they have, what opening times, closing times, all those sorts of things and just make it happen. And then when you get there, you have all the information and you can just make it happen. And it worked out really well. And, you know, a lot of people are very helpful and they’ll go above and beyond, especially when you start preparing early. 

And I just yeah, they love how far you can go traveling. And so if you come from the other side of the world to America, they they’re in awe of it. Sometimes they just, they I can’t believe you travel that far on a on an airplane for 15 hours from Brisbane to LA, and then connect over to wherever else you want to go as well. 

They love it. 

Lisa 

That’s, relatable in all the planning you’ve done, but it’s also exhausting listening to you talk about it. So it would be great if we didn’t have to go to that effort, I know it is important, but it would be so great if we didn’t have to because it was all universally designed. 

 

Lindsay 

And I remember a couple of years ago I wanted to go to Cairns. it was like it was just a quick spur of the moment. Within about four hours I had flights and accommodation all booked. So all my support work and work going up to Cairns. And she was like, okay, cool. As we were getting flooded down in Brisbane, unfortunately, and I couldn’t go away for the weekend that I had planned and I was able to contact the people in Cairns. They gave me the right information about the hotel. Everything like that worked out really well and because I hadn’t flown for a little while because of, for whatever reason, I had to contact Qantas, they got the information sorted for me really quickly with dangerous goods and special handling and things like that going up the plane and organized to go out on the Great Barrier Reef. 

And they remembered me from my trip from over ten years ago. So I was like, that worked out really well. I lent me a manual wheelchair to get onto the glass bottom boat, and I onto the pontoon and go snorkeling. And then unfortunately, the weather in Brisbane was really bad. 

So we got to extend our stay up in Cairns just flights and booked the same hotel room again for another three nights like that worked out well.  

Lisa 

Awesome. So in terms of embarrassing or just funny… I know shit goes wrong in our lives, you know that. But with regards to travel, what sort of experiences have you had that are just a bit a bit embarrassing? 

Lindsay 

Basically left field. So the trip in Cairns was fun and then the deckhand had no idea what he was getting himself into that day. They transferred me into the water. I got back out off the snow plane that was covered in salt water and had to get changed because you can’t sit in wet clothes for the afternoon because you end up with sores and things like that. 

So I sort of like, go, can you give us a hand? To get changed? Any help with the transfer and showering on the back of the boat really quickly and it worked out fine for him. So it’s a bit embarrassing for everyone else around…I got transferred with my pants falling down as we got off this little tour. 

And so they got to see the Great Barrier Reef and my bare bum.  

Lisa 

Two for one. 

Lindsay 

Yeah two for one. And then in New York, when we checked in on the first night, I was trying to help. When I was going to the bathroom, I thought, there’s a nice big light switch and pressed it, and the bedroom door swung open because I have a button on the door on the wall to open the door, and I didn’t realize I thought it was the light and I’m naked in the shower chair, pressing this button and the front door opens and people walking past like, oh well, welcome to America, everyone. 

 

Lisa 

Good job Lindsay! 

Lindsay 

So we go, yeah, there’s lots of stories you can talk about. Like in America, they don’t have universal, unisex toilets. They’re only got male or female and traveling with a female support worker, to go to the female toilet came out outside from using the bathroom in the cleaner. Guys. So you just come out of the women’s toilet? 

Lisa 

oh, man. So with regard to, I suppose, bad experiences and I sort of, I think we don’t want to harp on about those too much because we know there are so many of them, but we want to focus on solutions and what’s going well to help businesses make it more accessible for us. But in terms of as far as bad experiences, what have you had and what specifically about those is something that hotel chains or something could learn from to improve on? 

Lindsay 

I mentioned it before, it’s like putting information on the website. It’s a $50 billion industry. It’s untapped. It’s a lot of money. It’s 20% of Australians have a disability of some kind. It might not be in a wheelchair, but you could have some sort of disability, use a walking stick, have a hearing impairment, whatever it is. We also get out there. 

We work, we travel, we want to do activities to keep that information readily. On your website, take away the barriers. So yes, you might have a double or a queen bed in an accessible room, but make it make it like a sleep bed. It’s easy to take the doona off, separate the bed and the other part. Now there’s a lot of chain going around where under the bed they have boxing around it. So nothing gets lost underneath. And the people cleaning the rooms don’t have to bend down right underneath. Well, that’s a hindrance to people like myself who use a mobile hoist. They have to get transferred into the bed, so that stops us getting in. So a lot of hotel guys are we can’t take it because we can’t get the hoist in underneath. 

It’s like, why not? Because we can’t take the board out. It’s here and you’re wasting money because sometimes most of us will travel and we’ll spend our time, for example, 1 or 2 weeks in the one little town. And that’s a lot of money for a hotel for 1 to 2 weeks of Monday through Sunday. So those sorts of things like that, being open, I’d say to hotel companies, hop in a chair and use a hoist and try out your facility and see what it’s like. Then do an audit and come back to us and like, or accessible car parking, things like that. And it’s not just the hotels that we need to look at. 

It’s a whole point to point A to point B, and what I mean by that is how do you get from home? How do you get to your site cruise ship, have airline train station to start your journey? When you get to your destination, what do you do then? How do you get from the airport or cruise terminal to your hotel or wherever you want to go? 

When you’re at the hotel, how do you get to your daily activities? If you’ve been there for a week on the subway, is it on the train? Are the footpaths accessible? Do you want to go to Dreamworld? How do you get there? With taxis or trams and everything else that goes along with it? And there’s a lot of things that are broken at the moment because taxis are very hard to get a hold of, and don’t want to take people with a disability. 

I don’t know why, because you get a lot of money out of us. And if you get to a point, how do you get to those places? If taxis aren’t working, you’re at the airport, you want to get a coffee, you want to get to, you get to the hotel. You want to go out for dinner and drinks. 

You want to go to the movies, whatever it is you want to go and do, you need to have all of those all of those venues accessible as well? So that’s ramps, toilets, footpaths, theme parks, things like that. We need to have it all accessible. So that works for me and works for you. Place where there are wheelchairs. It’s going to work for the whole community because that allows mums and dads with prams or walkers. 

I remember being on the first accessible bus that they made and doing some promotion with them. Now I get on, you got to use a bus and it’s full because everyone is using it. So mum and dad got the pram, got people using all the shopping trolleys and everything like this. I like how good this is, everyone’s using that now. 

Lisa 

Yeah, that’s what a universal design is all about. And sort of following on from that, I suppose it’s another point to remember that for hotels, restaurants, anybody really that it’s not just about you and I and the people disabilities. It’s also about the many people that we can potentially bring with us. I know there have been hotel chains that I started out with, bought several people with me that also stayed there. 

So it wasn’t just about making it accessible for me, but by making it accessible for them. They also opened up that business to a ton of awards as well. Restaurants are the same. 

Lindsay 

Absolutely. Yeah. You can have yourself and your partner or carer. You meet with some friends and then you go in now for dinner and then it’s where can we go? What else can we go and do? And then if you’re doing some activities, all of that too. So you got ten people, you’re bringing into a restaurant or a museum and things like that. 

Make it all accessible and we will come. 

Lisa 

Sure. And I should probably acknowledge the point that we recognize that travel isn’t possible  for everybody. Roughly half of our community is at or below the poverty line. So I’m not suggesting that everyone with disabilities wants to go on yachts and cruise and eat caviar, but there’s no reason that we shouldn’t be talking about this. For those of us who do travel, whether it’s even for work. 

Lindsay 

Yeah, absolutely no. You might be doing it for work, but it can even just be going from your place in Brisbane and going into the city for the day and looking at whatever it is you need to go shopping. You want to go out for dinner with your friends, getting to a restaurant in just Brisbane or Sydney or wherever you are based. 

So it might be a stay vacation and you just can’t afford to go overseas and you just want to stay in Brisbane for the week and enjoy it, that there has to be accessible for those people as well. 

 

Lisa 

Yeah, absolutely. So given that there are so many apps around these days, and it’s really great that a lot of them are around disability and travel and everything. Are there any specific apps or websites or anything like that that you’d recommend? 

Lindsay 

Just Google. I Google, I use Facebook, travel groups, things like that. Try and talk to other people I might know of who I’ve traveled somewhere as well. 

Lisa 

Lindsay, you are a wealth of information when it comes to traveling with a disability. And you talked before about some tips and tricks, but have you got any more? 

Lindsay 

I do so think outside the square. Preparation is important; preparation prevents poor performance. Also sending an email with all your requirements. So it could be, what is the ideal height of the bed? The ideal height that you need to have that to transfer into. What is the under bed clearance? If you use a height measurements of the front door, bathroom requirements, all those sorts of things you need to make your holiday a full experience, have that in an email and send that to the hotel and have it pre-populated with photos, all that information. 

So all you really need to do is put it in someone’s email, change the name who you are sending it to for the hotel chain, and send that off so that when you get a reply back, you can put that into an email folder and then you can collate the information from there. 

Lisa 

Great tip. Thanks very much for that. So, we’ve caught up for breakfast a few times. I know I’ve had discussions about all the great work that’s been done to get wheelchairs on planes, but you have kind of a different view to that and so do I. But could you talk some more about that? 

Lindsay 

Yeah, there’s a lot of people talking about trying to get people onto airplanes and have them stay in their wheelchairs. I think that’s a good idea. But I also have my hesitations in, in that, because I find it very hard to understand how we’re going to get our wheelchairs onto a plane when we struggle to get through the galley way onto an airline, for example, I have to use, an Eagle hoist in in Brisbane to get through. 

And that’s very skinny. That’s the width of an aisle. And, and also the aisle chair when I sit on it and when you get through some of the chairs can be quite large and take up a lot of space. So your manual wheelchair compared to my power driver chair are very different in size. Mine’s quite long. 

Some 1.2m long, just in my chair, about 1.5 with my backpack and my feet hanging out the front. So I don’t know how we’re going to be able to get that on to an airplane when like we reverse parking and then you take up three seats into it. I’d love to see it, but hard to see how that’s going to happen. 

 

But I also think we spend a lot of money on this is my own opinion. but we spend a lot of money on maybe trying to make planes accessible and more accommodating, but why can’t we put that money to having a great experience for the whole journey and making sure that our wheelchairs don’t get damaged when we board and disembark? 

And now chairs that range from $5,000 up to $30,000 plus don’t get damaged and we can have a great experience and then an enjoyable one and get off at the other end, get our piece of equipment and have a happy journey. I think it’s yeah, I love to see the design and love to see all the demos actually on a plane, not in a conference room where people are reversing anything. 

Yeah, that’s fantastic, but how does that work in the real world and also today, how often do people travel like I, I do travel a lot. I might be twice in one year. It could be sporadic, can be 2 or 3 years before I travel again. So how often are we all traveling and all these sorts of things like that? 

And will that price point go up and will that price point go up as well. So we might take up two seats. Does that mean we have to pay for those two seats as well? 

Lisa 

Yeah, a really good point. I think it’s great that they are looking into it or that they are, you know, finding solutions. But at the same time, the taxi system, we need to be able to get to the airport first. 

Lindsay 

Yeah. We can’t get to get to the airport. We’re not getting on a plane. So yeah, I think there’s a lot of work needs to be done. 

Lisa 

And so what sort of things do you like to do when you’re away? And the reason I ask this is, a problem that I’ve had in the past is that the assumption is people with disabilities, theme parks, and that’s it. It’s like no one of my you sit around, drink cocktails or whatever, but there’s so much that we can do apart from just go to theme parks. 

Lindsay 

Yeah, absolutely. I’m just going to have a day to myself when I am away on holiday, so I don’t think I’ve ever done that once. experience in the local area. Like when I was New York, we went to the baseball, went on a helicopter ride, went in Canada. I would go up to the mountains and check it all out. 

And national parks go around the local town, walk around, experience it all, go and check out whatever is around. 

Lisa 

Are you are you crazy enough to go skydiving or do anything like that? 

Lindsay 

I really wanted to back in the day, but no more of the adrenaline stuff is off the table. But yeah, I love to go on a helicopter ride. That’s my one thing I like to do is I always try and go on a helicopter ride. I remember my first time overseas and went up to Canada and I was like, this helicopter opportunity. 

And I’m like I’m doing it. The guy behind the counter said, yes, you can. We can book you in. And I was like, fine, you guys work in how to transfer me on and off this helicopter, and we work it from there. And ever since then I’ve been away I always try and get on a helicopter and enjoy looking down on the on the city or scenery area and enjoying that experience, going out, hiring a car. 

So in some of the countries, you can actually go and hire a car quite easily, which is fantastic. And then you can drive around and get out of town and see the local area and enjoy those botanical gardens and local drives that you wouldn’t normally get to go and do, as well. So when I went to Perth, I was able to have that holiday experience because I was able to hire a car from the airport. 

Otherwise that holiday wouldn’t have been able to happen. So able to pick up a hire car, drop it off. On the day I returned, went down to Margaret River, went up to the pinnacles and all those sorts of things, which is like thousands of cars traveling and experiencing that. And then on the winds, as well, where I don’t, you know, always have to be, but be prepared for everything. 

And we got given some great advice by the tourist information. And she said, there’s stingrays at 7:00 in the morning that you can go and check out. And I was like, up at five in the morning, gotten ready, drive down and got to see the stingrays. And yes I can’t put my wheels in the water, but I was like half a meter away from these stingrays that they come up nice and close and like where I was standing in the water with all the other international tourists and checking out all that, checking them out, which is fantastic. 

And then driving around and then getting told of a great location to go and have lunch and look over the water and being back overseas and going to the theater and getting the opportunity to go and buy tickets to Hamilton that is sold out six months ahead of time and didn’t even realize and went up to the ticketing agent and say, can I get some tickets? 

You want to go? And I told her and I got like two seats a row from the front, from the front of the stage and I just allocate these wheelchair spaces in America for the theater for last minute bookings for people with disabilities, which is fantastic. So I got to sit there and enjoy the whole trip, watching fireworks on the 4th of July on the waterfront, experiencing all of that just trying the food, do different activities and I’m in a different area. 

I’m out of my comfort zone and having some fun and trying those experiences of whatever it is you can go and do, or going out partying one night and coming home at two in the morning and going through Times Square and just enjoying that is what I love to go and do. 

Lisa 

That’s awesome. Some of it sounds terrifying, but the rest sounds great. Now. Now you and I have spoken before about travel programs like Get Away and all those sorts of shows. What what’s your opinion about those and what do you think they should be doing? 

Lindsay 

I love watching those shows, but they’re I reckon they should include people with a disability on a regular basis, not just on a one off. Have someone with a disability being a presenter and showing what is out there the good, the bad, the ugly, the hassles of what needs to happen. Highlighting the industry not just locally in Queensland or Australia, but overseas as well, cruise liners and things like that. 

How does it work and how do you get over there? Because you got self retired, self-funded retirees, anyone and everyone wants to go out there and have a have a good time. And they work. People work hard for their money and they should be rewarded and should have the opportunity to go and experience what they want to go and do and not be restricted as well. 

So highlighting them, highlighting the features would be fantastic. And if you’re looking for a reporter, let me know. 

Lisa 

There you go, Getaway, if you need a reporter, get Lindsay Nott. I think it’s even if the even the reporter is not disabled. Just talking about all the rooms and all the sites. I mentioned that there are also accessible rooms or it’s also whatever accessibility feature there is, is also included. That doesn’t take a lot of extra work. 

Lindsay 

Opening up the opportunity and starting a conversation. Yeah. For example, like cruise line, like, people love cruises. There’s a lot of people that go out cruising. They’re affordable. They’re easy to go onto. For example, you could go through all the different countries and experience a day in each place, like those Contiki tours you do in Europe and things like that. 

You can do them on a cruise, and I’ve done several cruises where you’ve been able to hop on, take your luggage, get on the boat and then end up in five different ports and experience those opportunities which you wouldn’t normally get. But some of those rooms, all they’re all accessible. Sorry, they’re not all accessible, but they the rooms that they are, they’ve got the opportunity to put a hoist under the bed quite easily because that’s where they store the luggage, as well. 

Beds can be pushed together. couples on that can be separated into two singles. And they can do that on a cruise boat that’s quite small. So that’s done easily. And you got internal cabins, external cabins. But cruise liners need to make more accessible range because a lot more people want to travel. And we don’t always want to be on an inside, inside cabin because they’re like a little prison cell because you’ve got no windows around. 

Yeah, but I think, yeah, they do it well, but there’s a lot of boat trips that have some restrictions as well over in Europe, which makes it hard on the river cruises. but I think they, everything’s coming around like a lot more people are becoming accessible, which is fantastic. And the people on the boat, the staff members are awesome. 

They help you out. They go out of their way to give you a hand. I’ve been on some cruises where I can’t get off, which is understandable. So on those days, if my support worker wants go off for a few hours, that’s great because I can get set up on the back of the deck. 

Enjoy some sun and overlook the water and the port that I mean, read a book or just chill out and the staff members will bring cocktails or drinks over when I’m ready, help out with some food and then my support worker will come back by, have lunch together, and then just enjoy the afternoon. 

 

Lisa 

Yeah, I suppose that’s one area where I’d love to see them do the ports themselves, because we’ve looked into cruises and the boats are pretty accessible, which is fantastic. But then if you want to disembark and see the sights, you can’t because the ports aren’t set up and they’re not particularly accessible a lot of instances. So the boats are nice to stay on board. 

That’s kind of all you can do. 

Lindsay 

Yeah, absolutely. And I agree with that because there’s been parts where I’ve gotten off and you can’t get a tour because the busses are inaccessible, because they don’t take the busses are accessible for someone who can take 1 or 2 steps up in and they’ve got a walk or a walking stick, but they can’t take someone who’s confined to a wheelchair into the bus because it’s not built for it, but they need to build it for it for us, because there’s a lot more people wanting to get out there and travel. 

And for those is playing at home. I went to Vanuatu on a cruise and got told I can’t go into town because I don’t have accessible bus as I was like, how far is it from the cruise terminal to, to the, to the main part of town? They said, oh, about five K’s I was like, perfect, get me off. 

I’m going in by myself. 

Lisa 

Course you did. 

Lindsay 

I drive in on the road and my carer waiting in the taxi. And I’m holding up all the traffic because I’m doing like nine, ten k’s an hour and all the locals come past and they’re beeping their horn at the cab behind me, and then they realize I’m in the chair holding up all the traffic. So, I am the talk of the town got back on the boat and everyone’s going. 

We saw you get to the town. That’s so cool. Things like that. Which is great because if you don’t try your own little adventures, you just going to stay on the boat. So I was like, I had a great experience. But to see the locals they were very helpful. They lifted me over potholes up and over and over the gutters and all sorts of things like that. 

So they love it. They love seeing you out there and giving you a hand. And, I think that’s a great experience. 

Lisa 

Yeah, absolutely. I think it’s a reminder as well to whether it’s a cruise or hotel or something else, it’s not just about that venue, but it’s places around it, whether it’s a local cafe needing to be accessible or the roads or, or something else. That and we, we set in Fiji a couple of times and the hotel was great. It was accessible, but anything outside of that was just a train wreck to try and get around. 

 

 

Lindsay 

My mum gave me a bit of advice. She said to us, talk to the concierge, they know what’s going on. And in America, in different countries you do have to tip them. But they got great knowledge as well and they have given great advice over the years as well of going to experience and activities, or they’ll go and do some research for you. 

And yeah, one guy came back and said, we can do two helicopter rides, one with the door on and one with the door off. It’s like, I’ll do the one with the door off. And then turned out they couldn’t get, a transfer to the helipad, so he did the one with the door on. But that was unreal because I actually got to travel around the whole island, and I’ve a look at which was even better than the one first option they offered. 

So and the accessibility is all built in because they had a little plane with a little machine that goes up the side of the helicopter so you can transfer from your wheelchair onto the seat. Then that elevates guys up like an elevator level with the seat on the helicopter. And I have a slide board that I use, the goes between my chair and the seat and between my support worker and the ground crew. 

They were able to slide me onto the seat and harness spin, and off we went around the island and then landed and did the reverse to get out and back into my, into my chair. 

Lisa 

Excellent. So, Lindsay, you said something before that was really interesting that I’d like to come back to, and that was that. On cruise ships, the rooms are like prisons on the inside. But extending on from that, I sometimes find when I’m traveling to a place that the only accessible room is on the ground floor, facing the car park or the bins or something. 

And it’s a problem we have sometimes it’s like people disabilities want to be on generalizing here. We want to be able to look at the ocean or appreciate a nice view. I mean, I’m no use because my visions terrible. But what have you found in terms of the accessible room? What’s been the worst one? 

Lindsay 

So I’ve not really had a bad a really, really bad hotel outlook. It’s more about getting into that hotel that was more difficult. I did have one where I was at a backpackers and went up there for a night and went to go use the accessible bathroom, and it was filled with all the janitor cleaning gear. So they had it all locked up with all the cleaning gear in there. 

So the room was okay. It was just the bathroom. I couldn’t get to a new one, so that was a pain. so I understand where hotels put one accessible room in, maybe two, and it’s overlooking. Not a nice part, but they should make it also where they’re. It’s got a suite room or it’s got a room where, for example, you might be invited guests and they put you up in a hotel, but you can’t be put up in the nice room because it’s not accessible. 

So I think they should offer a variety of hotel rooms for everyone, every pay level and enough parking and all those sorts of hot I sorts of things. So make it easy. 

 

 

Lisa 

Yeah, and I know that, I did an interview a couple of years ago with the ABC, and it was all about how business owners in hospitality and tourism can make it universally designed and accessible for everyone. Because there’s this assumption that if we have, accessible room that has rails, for example, that we can’t possibly rent that out to anyone who’s not disabled. 

But that’s definitely not true. So, Lindsay, you and I are well aware of our own specific requirements for travel, but the disability community is obviously so diverse and everyone’s got different requirements. What are some of the other things that you’re aware of that people who will say vision impaired or deaf or something might need. 

Lindsay 

Excellent question. Everyone has their own specific requirements when you have a disability, but to make it more inclusive for everybody would be to have emergency cords. So what I mean by that is in the bathroom you have a little pulled string. So if you were to fall out of your shower chair or have an injury like have a seizure, for example, there’s emergency cord that you could pull which would go down to console so they know if something’s gone wrong, they can come up to help, that can have an emergency button on the bedside table as well. 

And for people who have a hearing impairment would be a for example, where there’s a fire alarm, the light will flash red, shaking alarm that you could put under your pillow as well, but that could be introduced not just for the room that has an accessibility requirement that could be in every hotel room, because then you don’t know who, who or the hidden disabilities as well. 

So you can have that implemented into all the rooms as well, which would be quite an easy task when you’re retrofitting and doing refurbishments as well. 

Lisa 

Really, really good point. There’s so much about accessibility which can be extended to everyone and everywhere.  

Lindsay 

Captions on the TV as well. 

Lisa 

Yeah, that’s another one. Good point. So compared to the rest of the world, how do you think Australia is tracking. 

Lindsay 

We are pretty good. We got a lot of the accessibility requirements implemented with standards and things like that. We have the companion car we work on, I think TransLink access pass cards and things like that that make it easy for people with a disability in Australia to do daily activities and have carers come with them included. So what I mean with the companion card is it’s a two for one deal with venues. 

 

 

For example, if you were going to the movies, I can pay for myself and my carer can come for free, for example, and help me out. Stuff like that that’s used universal throughout Australia, but you can’t use that overseas. 

Lisa 

Yeah. 

Lindsay 

In America. Me personally, I find that way ahead of us. they are way ahead of what we are here in Australia. For example, I went to a shop in one of the cities and my friend went in and they were looking, looking through the clothes and the shop assistant came out and said, do you want to come in? 

And I said, nah, I’m okay. I’ll just wait outside. That was about four steps to get into the shop as a not so good. He said, come on in, I’ll get a ramp. I said, no, don’t worry about me. You’re going to have a look around. And so he got the ramp and put it over 4 or 5 steps, pulled it out. 

I went in and had a look around, went back. I said, thank you very much. Appreciate that. He said that is no problems. And that’s just the way what they do over there on like this is unreal. Well, can we bring that back home place that, that was like that. My that makes the experience, that makes it a little bit more enjoyable or I’ve other parts where I’ve gone into a restaurant and they have, the restaurant’s full, but I have one table set aside for people with a disability, and they got the wheelie symbol on it. 

And they’ve got a seat for your friends or your companions or whoever else to see that. And then they’ve got one area where it’s vacant for the wheelchair areas that I can then hop in and get in under the table, which is great. So and everyone’s aware of it, they have tie down tie downs on their busses in the States, which is great because we don’t have tie downs on our busses in Brisbane or in Australia. 

So that’s that was very helpful. And the bus driver was like, yep, I can tie you in, just take a seat and everyone gets up out of the end of the row for you as well. So that yeah, they do it well over there.  

Lisa 

We should both just move. What about us by some of the specifics? And I’m thinking more of people who either have a new injury or have had one for a long time, but who want to travel but think, oh, I’m just I’m limited to this tiny little confined of my home because I can’t possibly do anything because of my disability. 

You’ve obviously proven that’s rubbish. But what do you think other people with disabilities need to know? 

Lindsay 

As I mentioned before, having an email with all information you require and sending that to the hotels to get your information that you need, making sure that you get travel insurance and letting them know about your disability and making sure that you can get full insurance and if not partial insurance for whatever you can claim under your specific disability. 

 

And having that open conversation with them, taking medications, making sure that you have enough for your medic for your trip, maybe for an extra week or two so that in case something does go wrong and you’re stuck overseas, or you run out, you you have enough there to, to have for you. Not just medication but incontinence products, things like that. 

Making sure that you’ve got the right equipment. Making sure that your support worker, I travel with a support workers. So making sure that they’re fully aware of what’s happening, having a clear agreement with both parties, making sure that you’re comfortable with everything as well, and having downtime apart as well, is very important because you don’t want to burn each other out. 

I’m a go-go type of guy and you want to make sure you got the right person to do that with you as well. thinking outside the square, like, for example, there might be a day where it’s raining and you can’t go and do what you would normally do. So you might go find a restaurant and or a coffee shop and sit there for a couple of hours and talk to someone and go, you know what? 

You guys can go over here, this is happening today and think like a local or think outside the square and be able to go down and do a different activity that you wouldn’t normally think of doing. So sometimes they work out just as good as anything else, and be bold. Don’t be afraid to ask questions of what can I go and do? 

And I remember one time I had a tour booked and we went through to the Amish community and everyone was getting these buggy rides and it’s all included. It’s like, I want to do this. So I asked them and they said, yeah, we can get you on one. A couple of the guys lifted me up and my carer got my cushion and we stuck that on the seat sat on that. 

And when did the buggy ride and come back, which was great. It was horse drawn buggy ride through the Amish community, which was fantastic. 

Lisa 

Yeah. I’m not sure they would have been used to wheelchairs with the Amish. 

Lindsay 

No, obviously not, because when I got back, my wheelchair was covered in hay. So I didn’t know what was going on there. But also, I also think that, getting to know your own body, knowing what you can do so safely when you’re traveling on a plane because you can sit on economy premium business, you can do it all. 

You can take cushions, you can take your armrests. So some of the other advice I’ve been, that I’ve learned over the years is that you take all your breakables with you. So I use a power drive, wheelchair user, manual drive, manual chair. So for me, it’s taking the armrest. I’ve taken, taking the controller so that it doesn’t get damaged, taking my cushion that I sit on and taking a spare cushion that I use now to sit on in the on the plane. 

Because if you’re sitting there for a couple of hours, you can you’re prone to pressures. So it’s like I for my level of injury. 

Lisa 

Which I am too. 

 

Lindsay 

Yes. You don’t want that because you can spend years in bed recovering. So this is a special cushion that’s very thin. Your, work colleagues here love sitting on it. It’s a very expensive cushion for about $1,000, but it’s all air, and you can sit on that. And it’s very thin because I’m quite tall. I’m six foot. When I sit in the airplane seat, my head is just level with the top of the seat. 

But when I put a cushion on, I’m even higher. And because I can’t move my body properly, I’m restricted. So being restricted with the seatbelt makes it even harder. So my, my occupational therapist, advised me to get a travel cushion. That’s what I call it. So it’s a low profile, very high. and as you fly, it expands. 

As you get higher in the altitude, that the cushion expands for the air. So my support worker needs to be able to adjust it and lower it down. And so that I think bottom out or don’t have to sit on to my chair. So having that is fantastic, but also having all your luggage that you need. So having any drainage bags, all the incontinence products your medications and straws all handy for the support worker to hold on to. 

Because if you’ve got that little sign that comes on, keep your seatbelt on and you can’t stand up to get into the overhead luggage, your baggage for a couple of hours if you want to have a drink. So making sure all of that information so all of that equipment is close by so that the support worker can have that on the plane for two hours before the sign is unlocked is very helpful. 

And also being mindful of your temperature and your food and your drinking, how much you’re looking after your own body and pressure care stockings as well. So for circulation and DVT. So it’s a lot to take in. but I’ve learned that over the years and just talking to people it’s helpful the Facebook groups too. 

Lisa 

Yeah I think what you said before I feel about just being brave, but just being brave enough to ask whether it’s asking the flight attendant for a blanket because your temperatures drop too far, or asking someone for help, up a hill when you when you’re traveling. But people are a lot more willing to help than we sometimes think they are. 

And you said something before about knowing your rights and a story about that. Could you repeat that for us? Because I think it was really important for listeners to know those with a disability. 

Lindsay 

Yeah, I like I, I like to travel with Qantas because I, they look after me really well and and I think you do too. Yeah. But when I have my luggage checked through it and I have another airline connecting that I have to take all of my luggage with me at the same and not pay an excess luggage fee. 

So knowing that information and knowing that you’ve booked correctly and that’s all being ticketed through, I didn’t. I then don’t have to pay an excess luggage fee of whatever it’s going to be, because it’s going to be hundreds of dollars because I’ve got 5 or 6 bags with me. So making sure that you have that paperwork showing the staff members that information so you don’t get, billed at the other end, but also knowing that if you just talk to them like a normal human being, you can get you can get used your point across and they understand what’s happening, and then they can look into your history and know what’s going on as well. 

So being upfront with the airlines at the very beginning, putting that all that information through, yes, it’s a lot of hard work and time consuming, but it pays off in the end. 

Lisa 

Yeah. And, absolutely. It would be great if we didn’t have to do that if everyone just got it. But for the time being, there’s work to be done, but it’s worth it in the end. I mean, you can just sit back in the end and enjoy the trip instead of having to worry about everything else. Now, I know you’ve brought in a ton of equipment. 

You and I both travel with equipment and lots of stuff. But I was wondering if you could take me through some of that for people with disabilities, just to give them an idea of what, what a trip means for you. So it’s not just a case of, throw in a bikini, some sunscreen and off you go. You got a lot more going on, so can you explain that to me? 

Lindsay 

Yeah. So I use a hoist, that, machine that lifts me in and out of my bed, in and out of my shower chair, my wheelchair and my support workers will put a sling that goes around under my legs, around behind my back. And then it’s like a crane that goes under the bed. And then they hook it up and they raise it up with the remote, and then they will put me out and position me over my shower chair or my wheelchair and put me in the position and then get me set up for the day. 

And then when I come back at night, they take me out of my chair and put me into bed in that respect. So that’s what I was talking before. When they put the blocking underneath the bed that stops the hoist going under. 

Lisa 

And what about the bed block that you brought in? 

Lindsay 

So I travel with these, bed blocks, I carry six now and they go under the legs of the bed. So as we all know, beds come in different heights and sizes and all sorts of things like that. And, on some of the beds, when they’re really quite low and you can’t get the hoist under it, there’s an easy fix. 

You just put these bed blocks underneath and it goes under the legs and it rises the bed up. So that way I can put the hoist under. Or if I for people that don’t need a hoist and I want the bed a bit higher, the transfers that someone like yourself. So someone who has paraplegia and you want that nice smooth transfer across so that it’s easy to do, you can put these bed blocks under and then you makes it nice and easy. 

And even if the bed’s too high, it’s too hard to transfer up into. Makes it very hard. One chair for it’s going to be uphill, the other transfer is going to be downhill. So you’re going to have a hard landing somewhere. and these and I’ve learned over time now that I travel with six of them because some of the beds have six legs and you want the leg in the middle to be supported, because when you’re lying on it, you can’t get the hoist on it because it’s a bit of a bend in it. 

 

Lisa 

I see, what about slide boards is something I’ve used before, but for all the listeners, if they are not quite sure what they are?  

Lindsay 

Yeah. So it is like an oversize serving tray that I use between my wheelchair and the bed that I carried as a backup because I like I was saying I use a hoist, but on those occasions where you’re out and about and you’re stuck and you can’t use the hoist, I can use the slide board. So it’s, a board that I put under my bottom, on my, in my wheelchair, a position that next to the bed and the support worker can transfer me onto the bed, and I can sort of position myself in a way where we can slide two and two and four to and from the bed. 

But it also it can be used for people getting in and out of that car, getting to some other like, whatever activity that I want to go and do, for example, roller coasters and all those sorts of things as well, so people can use that or the helicopter like I mentioned. So that’s very important too. 

Lisa 

Yeah. It’s kind of like a, like a bridge, a space between two different spots. 

Lindsay 

Yes. And talking about the hoist, one of your staff members hopped in it before just to experience, and they really enjoyed it. I think it’s quite uncomfortable, but you can understand where when they have when you like a staff member having a practice and you can understand what that experience is like. Now, why those beds need to be a certain height and things like that. 

Lisa 

Yeah, absolutely. So for, hotels or any sort of tourism venue out there looking to make things more accessible, where do they start? What do they do? What’s the first thing they should look at? 

Lindsay 

Call up people that have a disability or if someone’s coming through, listen to what they they’re suggesting, hop in a wheelchair, an experience, hop in the chair for a day and go through the whole hotel, the cruise ship, whatever it is that you are running. So you know what it’s like for that person to come through and experience that journey. 

Going to the toilet, buying food, going to the kitchen, going to the gym, whatever it is that you have, you’re offering. Go through an experience that so you know what that lived that lived experiences for a couple of hours. And listen. You can then reflect back on that and change that, how the staff members interact with customers as well, because we are the paying customer. 

How do you talk to those people and things like that? The concierge, all those sorts of people, the people in the front gate of the theme park, the museum, the restaurants, all those sorts of things like that. It’s all very important that they all experience it. Also at the, at the, airports, going into the bathrooms, making sure the accessible bathrooms got the handle in the right spot so that someone with limited hand function can lock the door by themselves, and that the toilet roll paper is maybe bit better than a single ply. 

Making sure that’s easier got hooks so that people, for me, for example, I have a close to me bag, so my support worker needs to hang a bag on the wall so that we can get to items and make it easier. So having those on the on the bathroom walls and going through the lounges. So for example, I’ve been fortunate enough to go into the business lounge before and those bathrooms are really well maintained. 

But making sure those other airport, other bathrooms are well maintained and having those emergency cords as well, and the speakers in there so you can hear the boarding calls and things like that. 

Lisa 

Yeah. So that that sounds like a lot for anyone listening. But I guess the first place to start is with disabled people themselves. Nothing about us without us. So if you are confused by the long list of things to do, start with a person with disabilities. People with disabilities engage with their community to find out specifically what sort of things you can change. 

Because you can assume that all we need to do X, Y, and z. But it might not be that at all. 

Lindsay 

Might be just a little things, is you might have a great facility. You just need to change a little thing, a couple of things around offering more wheelchair parking instead of being 1 in 100. Make it ten. Make it triple what you’ve got because you might have a function one day and you never know who’s going to hire out your conference room. 

And you might have 30 people with a disability coming through and wanting to use that conference room. And then all of a sudden you’ve got everyone coming through and wanting to use that venue. 

Lisa 

Or on the flip side, similar to what I said before, you might have only one person with a disability who needs access to a function room, but that way 20 other people, 20 able bodies with them. So that entire decision about where to book the venue, all the money that will be spent that day, it comes down to is it accessible for that single employee with disabilities? 

Lindsay 

My other part is some advice. When you go to the airlines and security on cruise ships and things like that when you go through, I’m not sure if you’ve experienced this. When you go through, check in, you then go through security and you have to have you don’t go through the little hanger you get the pat down. 

They do a full check over. They pull the armrest off. They check under your cushion. And I always let them know that I have a drainage bag so that when they feel in the tube or the drain the bag themselves, they know what’s around because that they’re fully, fully aware of it. 

 

 

And they are completely understanding. And they’ll help you take all your luggage, you hand luggage through. And they’re very respectful as well. So don’t be afraid of that. Have you ever been offered the room? 

Lisa 

They have asked me, do I want a room like, no, this is a five second job. 

Lindsay 

Yeah. Just do it here now. Yeah, let’s do it now. Let’s get going. I want to get through to the lounge and have a drink and chill out before I get on my flight. And the cruise ships are the same. They’ve they’re all very accommodating and they’re well, well, well trained in that respect of it. 

Lisa 

Yeah. Not for someone traveling for the first time might be a bit daunting to suddenly have this stranger pat you down in public, but it’s no biggie. I know one of the airports I’ve been through a few times, they’ve introduced this long consent form you’ve got to sign and everything. Just because I’ve been complaints about people having pat downs in public and whatnot, but it’s in my experience, it’s always been really respectful and really good. 

Lindsay 

Have you had the experience when you get on the plane? Because always I’m always first on last off, and I always have to allow enough time for a connecting flight because you’re going to spend at least an hour getting off the plane and getting to your luggage and then transferring to the next flight. And it’s the same when you get on. 

I always have to get to the airport maybe three hours early so that you can. Well, that’s just me as well. So I’ve been early. you’ve checked in, you get through, get onto the plane, and you get on before everyone else. So that allows you enough time to do your transfers and get comfortable. But I always have the air host there hosting the male or female will come down. 

Yeah. The male or female air host, you will come down and have a chat and they give you a one on one briefing on what’s going to happen. And they give you some times I’ve been really lucky. I’ll give you a glass of champagne or some drinks that you wouldn’t normally get. 

Something very lucky in that respect that you get all this special treatment. I was like, well, there’s a reason why I’m getting it.  

Lisa 

Yeah, can’t walk, I get champagne.  

Lindsay 

Yeah. No, it’s, it’s they, they do go out of their way to help you out. 

Lisa 

Yeah. No it’s always, always pretty good in my opinion. I know there have been some horrible experiences, people I know who’s had really terrible experiences. But it is it is largely good. And we do want people with disabilities to travel and see the world and get out. And yeah, so I suppose that’s one of the reasons we wanted to talk about travel and tourism on this podcast, is to encourage more of that. 

Lindsay 

Yes, absolutely. And if the tourism industry is listening, jump on board. And the airlines and things like that. If you’re looking for people to do a review, love to write in your magazines about your destinations or what’s happening at the airport, and how do you get from it? Parking and taxis and all those sorts of things to write. 

Write about those in your magazines and your journals and whatever else it is, and share that information. And have you have people like myself for you going through the airports and giving reviews and feedback to the airlines and whoever else that you can share that information? cruise companies, the whole lot. 

Lisa 

Yeah. So there are any people who you follow personally on, on social media or something? Because I know there are a few. I’ll call them disability influencers, for want of a better word, but who are out traveling, which is great, offering tips and tricks and those sorts of things. So apart from yourself, who else would you recommend that people have to look at? 

Lindsay 

I like watching your journeys as well, Lisa. 

Lisa 

Oh Oh. Pretty boring. 

Lindsay 

I like Squirmy and Grubs. There’s Roll with Cole. There are a couple of others that I follow on YouTube and Instagram as well. 

Lisa 

And what about you? Where can people find you? Lindsay? 

Lindsay 

You can find me on MyC5Life. It’s a play on my disability level of C five of my level of injury. I have a YouTube website, Instagram. 

Lisa 

All the social. 

Lindsay 

All the socials, podcast, the whole lot got it going on. And you said I should get back onto TikTok. 

Lisa 

Oh yeah. 

 

Lindsay 

But I am looking to that one. yeah. LinkedIn the whole lot got it all going on there. And like sharing my journey and sharing that around to other people can learn as well. without that knowledge. No guys. No way. 

Lisa 

Absolutely. I remember you saying ages ago when we caught up. And it’s not just people with disabilities who find content really interesting, but allied health, Ots, physio. So like, oh, okay. So that’s a lived experience. How you are. What are you telling us this morning? How you either ate a burger or did something? 

Lindsay 

Oh yeah. So on that on one of my trips. we had to we, we hired a car. We couldn’t get a, we couldn’t get out. And then what we wanted to had planned. So we hired a standard car and I had my slide board, which I’d take all take with me. And we got into the car and we were driving around and it wasn’t worth getting out for lunch. 

So I just sat in the car and had a road trip and had a toasted sandwich. So I didn’t have my normal tray, which I have at home, but I have the slide board, so I put the slide board on my lap and I eat this toasted sandwich and just said, this is how you eat a sandwich on a road trip. 

When you don’t have a slide board, when you don’t have, you try to use a slide board. And I got like a hundred thousand hits, on that one, just giving that little bit of information. So it’s. Yeah. Thinking outside the square. It helps a lot. 

Lisa 

Just be ready to adapt. Be ready for… no plan words here with the podcast, but ready for the unexpected, I suppose, because as you’ve, as you’ve shown, travel is absolutely an option for people with, with all sorts of disabilities. And as I said, the very, very start. You travel more than I think most people I know, probably even though you also have more challenges than most people I know is. 

So I see you for just doing it. 

Lindsay 

I thank you. Thank you. I appreciate that. 

Lisa 

We always ask our guests at the end, what about them or things I’ve talked about is unexpected. 

Lindsay 

I am so organized that sometimes I forget things, which is unusual, but I had, an experience. I had an experience when I got to Hawaii, turned up, unpacked and go, I’ve forgotten my charger for the hoist, and I’m here for ten days in a two and one week holiday on a cruise I like, wow, what am I going to do here? 

So we just did the bare minimum of transfers, looked around for another charger and finally found one. And it was great. It was actually meant to be because the company that I found to hire the charger actually had a beach wheelchair that was accessible, and I was actually, they said, we can lend you this chair or hire it for the for a week. 

And they brought it over and I’d actually got to go into the ocean for the first time since my injury and experience that, adventure, which I wouldn’t have happened if I had taken my charger. And. Yeah, so that was unexpected. It was a great mistake looking back now. And yeah, it’s just things happen for a reason sometimes. 

And that was meant to be and it was great. And yeah, that was unexpected. I can tell you. 

Lisa 

That sounds excellent. Well, Lindsay, thank you so much for coming to the studio. You have done an amazing job telling us all about tourism and disability and traveling so much information. Where are you off to next? 

Lindsay 

I am off to Singapore for a week. I really don’t like the weather in winter. I struggle with the cold, but I’m going over there for a week to warm up. I haven’t experienced Singapore. All the accessible features that I’ve heard all about. I’ve done a lot of research at the moment of what to do, where to eat, what I what I can go and do with Universal Studios, all sorts of things I’m going to document. 

You can check it all out in a couple of reviews and really looking forward to it all. 

Lisa 

Sounds awesome. Love to catch up for brekkie again. You can fill me in on how it went. 

Lindsay 

Yes, absolutely. Have you been? 

Lisa 

I have, it was fantastic. Lots of air conditioning, which I loved. But, yeah, really, really good. And we can’t wait to go back. 

Lindsay 

Awesome. 

Lisa 

All right. Thanks again for coming in, Lindsay. 

Lindsay 

No worries. Thanks for inviting me along and hope that we a lot of people get out there and travel and that’s how you do it. 

Lisa 

Well, yes. Happy traveling people! 

Thanks for listening to that was unexpected. If you liked what you heard and you want to hear more, then hit subscribe wherever you get your fix. Have any questions or topics that you’d love for us to tackle? Great! Email [email protected]. We can’t wait to hear from you. Check out our show notes for transcripts, video recordings and find out more about our guests plus the useful resources they share. 

You can reach us on Facebook, Instagram, X and LinkedIn @YoungcareOz. Let’s not forget an inclusive community is everyone’s business. So let’s keep working together to break down barriers and smash some stereotypes! 

 

Lisa 

Are you sick of the same old disability stereotypes? We were too, and we did something about it. Welcome to ‘That was unexpected’, a disability lifestyle podcast for everyone, brought to you by Youngcare and hosted by me, Lisa Cox. Join our amazing guests as we delve into topics that don’t often hit the headlines. So let’s do this. Prepare for the unexpected. 

If you low vision like me or have other accessibility requirements, check out our show notes. Before we get started, we’d like to acknowledge the traditional owners of land on which we record. We pay respects to their elders, past, present, and emerging.  

 

Lisa 

Hailey Brown – welcome to the studio really great to have you here.  

Hailey 

Thank Lisa.  

Lisa 

Hailey is the CEO and founder of Vacay it. Is that how you pronounce it? 

Hailey 

Vacayit, one word. 

Lisa 

Yes. Vacayit. And she’s here to talk about that app and a few other things and really interesting things to do with travel, disability tourism, etc. Tell us about Vacayit and how it came about, what it’s all about. 

Hailey 

So make it more or less is just we call it an audio guide to the world. So what you would typically imagine, a museum tour, an audio tour in a museum. We do everything kind of outside of the museum, so we do historic walks. we’ve done prison tours, cemetery tours, boat tours. and then we do the immersive audio for that, and it’s all stored within the app. And, so you can take your own headphones and, not have to use their old, you know, janky little, headphones.  

But the reason we started was, I was in uni at the time, and I had the opportunity to present an idea to the World Tourism Forum about a gap in the tourism industry. And I was originally presenting something about how we rank lowest globally for cultural tourism motivations but we have the oldest living culture on Earth. But I didn’t really have a solution for it. I was kind of more presenting it as a research topic. And so the night before, I was talking to my friend Henry, who’s been blind since birth, and he was telling me about a trip that he did to Mount Kilimanjaro and afterwards, you know, just owned the whole thing. And then after he wanted to come back and do something just as exciting.  

So everybody told him and even Google told him that he had to go on a safari, which he did, and he described it as ‘a face full of dirt. It smells like shit. And he didn’t want to get out of the vehicle because he didn’t want to get eaten alive’. 

And we laughed about it originally. But when I asked him, well, you know, I was kind of thinking, oh, I don’t have that experience. So when I asked him what would make that experience better, he said two things to me that I thought, were actually quite simple to solve. He said, I’d love to have the right accessibility information so that I can make informed decisions about where I want to go myself and I would love to walk down the street and listen to the stories and sounds of the world around me.  

And so I presented this idea of an audio guide to the world, to our tourism forum. We end up winning the Global Innovation Award. And once we won that, I was like, all right, there must be something in this. 

Lisa 

Ya think?  

Hailey 

Yeah, so that was, it was pretty crazy. It went from like a little idea overnight, you know, being in Switzerland, at a global event. But, yeah that’s how we started. It’s pretty interesting.  

Lisa 

Oh, that’s great. I hadn’t heard the story of how it all got started. But I know you’re a Ted speaker as well and I was in the audience for your for your presentation and during the opening, you said something that really struck a chord with me, and that was about how people think about accessibility and what they can do differently. Can you explain that to me? 

Hailey 

Yeah. So the when we came into this space, we really only launched around in 2022, which I’m sure you know, we’ve been flying the flag for a long time. You know, people in the disability space. But as far as accessible tourism, it kind of started to have that conversation around at the state and national level around that time. 

And when we started talking to people, the number one thing they’ll say is that, oh yeah, we’re accessible. We have a ramp, or we’re going to be accessible. We’re going to build a ramp. And for us, we typically look at the visitor experience and we look at how do we make a bad experience better. Not necessarily a good experience great. And so, you know, the biggest thing that we said is it’s it’s more than just a ramp.  

Lisa 

It is about so much more than a ramp, Lindsay Nott who did our last podcast. He is a person with disabilities and we’re speaking about this as well. And it’s not just about a ramp. That’s a problem I’ve had with hotels. I have a ramp at the front door and they’re disability friendly. But then if you don’t have a shower or get to the bar or there’s just this is not done. 

So what’s the overall goal of Vacayit?   

Hailey 

Our goal is to just audio describes the world. So anywhere you go, you can listen to the stories and sounds of the world around you while also having accurate accessibility information. So what’s really interesting about the app is that, you know, now it’s quite reflective of the general population as far as our user base goes. So we have, you know, still more people with a disability, but about 70%, of people on our platform don’t identify as having a disability. 

Our next biggest use, user group people on the autism spectrum, because they use it as a way to familiarize themselves before they go. And then it’s people who are blind. But because we have that accurate accessibility information, allows people to plan, but because we designed with people with disability first and we made it so sensory. 

Now everybody enjoys it. Everybody likes it because it was designed for everyone. It wasn’t just designed for people with disability. 

Lisa 

That’s what universal design is all about.  

Hailey 

Exactly. 

Lisa 

So tell me about the team apart from yourself, you’re doing great things. The team at Vacayit, there’s people there with disabilities? 

 

 

Hailey 

Yeah. So our content writers are blind and low vision, or have low vision, which provides is really cool, you know, approach on describing a destination. So the way we talk about it is instead of saying, go up to the top of the mountain and look at the view, which is what traditional tourism marketing is, we say, go up to the top of the mountain and this is the view, and we explain the view and we talk about the trees and the sounds and you know, what you’re looking out at. 

And then also kind of the birds or whatever that you can look out for. And it’s not just necessarily a nature eye gab. Actually, around 60% of them are indoors. But I think it takes that concept of instead of look at the view, how do you make it really sensory? multi-sensory for everyone. And so because they’re blind, low vision, I, you know, they have that really unique, approach of asking and working with tourism operators, you know. 

Oh, but you said, you know, that there’s a train outside your place. And I was like, yeah, but why is that relevant? And it’s like, because that actually adds to the experience when you’re walking and you can hear the sound of a sugar cane train going next to you, you know, and you know, things like that that make it a lot more multi-sensory and also means that these tourism operators will walk away knowing that they’ve worked with people with a disability. And it kind of challenges that stereotype that’s out there. 

Lisa 

Awesome we are all about that at our podcast, challenging stereotypes. So our listeners know it’s not just an app it is also available on a website?  

 

Hailey 

Yeah. So we’ve got our available on the app. We have it available on the Vacayit website. But then we also have a range of technology that allows all tourism operators to put it on their website in their brand, and it’s an accessible audio player. It’s compatible with Screen Reader, it’s got transcripts. and it’s quite an intuitive to use. 

Lisa 

It’s so cool. I was on the website recently and thought, oh, look at an area that I already know about and typed in Tanga Tours, Tangalooma.  

Hailey 

Oh, that’s just gone up. 

 

Lisa 

Oh has it just gone up? And as someone with vision impairment, not totally blind, I really enjoyed it. And I thought there is so much on this trip that I just missed because I couldn’t see it or I just didn’t do it in the first place because of accessibility requirements or those sorts of things. So it’s so well together. 

But the tourism industry more generally, it’s picked up a tiny bit around the accessibility and the pennies dropped that people with disabilities travel, all sorts of disabilities. And how do you think of all the places you’ve traveled? I think before the podcast, you say 45 countries or something?  

Hailey 

Yeah, yeah, 45 countries.  

Lisa 

Who is doing it well, in your opinion? 

Hailey 

So I think South Korea has a really good plan to make all of the, you know, tourism attractions accessible. So they’ve got a ten year plan which has range from 2017 to 2027. So doing this a bit before it was cool. Right. And they focused on five key areas. And within those five key areas, their goal is to make every tourism site across the country, completely accessible. 

And so they’re doing it one day, one venue at a time. And their goal is in that ten year plan to have 10% of their tourism operators completely accessible. And so the five areas that they have is in improving tourism site facilities. Those are your bathrooms and etc., etc.. Then there’s the strengthening city transportation links. So making sure that you can actually get to, you know, a destination can be accessible. 

But if you can’t get there, you know, that makes it incredibly hard, enhancing physical accessibility. So everything from ramps to getting in the door to navigating the whole venue. Developing inclusive experiences, so that kind of comes down to, you know, sign language tours, audio tours, finding a way, you know, allowing people to get on a gondola, and having, you know, not a glass bottom so that wheelchairs can come on it. 

And the last one is improving accessibility information. And so getting accurate accessibility information and providing it so people can plan their tours. And they’re sitting in around 6 to 7%, with a couple years away and Covid in the middle. And you know, I when I was there, I was looking around and I really felt like when a destination and a tourism attraction was there and had been worked on, it was fully accessible. 

 

Lisa 

On us by South Korea. I love they’ve got KPIs around it. Instead of just vaguely saying, we want to do something good or, you know, we want to improve it, but there’s not a set agenda. So that’s who’s doing it really well, who’s maybe not doing it so well and things need to improve. 

 

Hailey 

So I you know, actually one of the places that I think is also doing it well, but it’s still quite young is Australia, you know, I think a lot of, you know, our plans and our funding that have gone into it recently has been such an incredible, step. And there’s been so much progress. And I’m sure you felt it here as well, which is the conversation is happening. 

There’s more representation in media. But since we are in Australia, I think this is a good place to say that, you know, Australia always has improvements to make. And I think, you know, there is that notable absence of concrete and a concrete and tangible strategy for the future, and especially in Queensland. You know, we’ve got the Olympic and Paralympic Games coming. 

Lisa 

Yeah really keen to see how my city transforms after the Paras. 

Hailey 

Exactly. And you know, you know, even if it’s not from an inclusion perspective, you know, we’ve got the largest disability voices in the world coming to our city. And we need to be ready for it. And if not, it’s going to be a PR disaster, if anything. But it should also just it should also be a really good way to get people, you know, up and running about it. 

And the new strategy that’s come out a couple of weeks ago is really good. It kind of changed over like the last like six months, from being a couple of points to being one of the two overarching strategies for the Olympic and Paralympic Games. And so everything that we do, we need to consider accessibility, and First Nations culture in it. 

And I think that’s going to be incredible, like progress, forward. I do think there’s a, you know, we need to have a strategy on, you know, it’s good to say it’s accessibility. We’re going to think about it, but we really need to have I think we need to really break down what that looks like. And if we can make a plan going forward, I think we’ll see big progress in this space. But there just currently isn’t one. 

Lisa 

So this this question might be similar to what you said, similar to what you just said. But apart from the benefits to people with disabilities, all we can actually see and experience and feel all of the sights and sounds of an attraction or a venue. What are the benefits to other people? Maybe business or government, etc.? 

Hailey 

Well, it’s just a good business decision. You know, I even think about how when we made our app in the first place, we probably spent $10 on accessibility in our business since the start. You know, we haven’t really needed to do anything because we designed that from the get go with people with disabilities. and it hasn’t cost us anything because we built it with people with disabilities from the start. 

Yeah. and, you know, you see organizations with something a thousand pages on their website that I’ve got to redo. That’s hard and that’s incredibly expensive. and, you know, there are a lot of websites being really done at the moment, and they’re still not considering accessibility and that, and that’s going to become legislation at some point. 

So you may as well make it accessible if it’s from a basic legislation point. But as far as you should do it, even from an SEO like search engine optimization perspective. Yeah. If you have audio on your platform, typically actually audio is typically not searchable. But you know, with our API though media player, it allows you to put the transcript in it, which means that all the words that are said can also be searchable and even putting transcripts on your website, for videos that are up there, allows you to have so much information that’s searchable, that’s hidden in the transcript, but that allows more people to be driven to your page. 

So when you make your products more accessible on your website, it also means that they can scrape information better from your website. But if you hide it behind a photo and you don’t edit text or you don’t, you know you want to hide it behind something else. And it it’s really hard for it to be searchable. 

So, you know, even from a web perspective, it’s really smart to make your website accessible. And it’s going to make, you know, even when you’re making your first page that you’re going to duplicate 100 times, just make sure that first page is accessible before you duplicate it, because then you are saving yourself so much time and money in the future. 

 

 

Lisa 

Yeah, I think, I think it’s a really good thing for business to hear. But we were talking before recording that. It’s great to see businesses just having to try because often there’s so much you’re all to get it wrong. Will get caught out on Twitter or X or whatever it is now. And so we won’t do anything. 

But that’s not the approach to take. Have a crack, have a go, get people with lived experience to consult or involved in some way. But it is. It is great to see more and more businesses having a try so you don’t have to try and solve the entire website would be great if you do, but as a first step, start with that front page, that home page. 

Hailey 

And you can even put widgets in there that kind of do the work. They kind of mask all the problems on your site because you can change the contrast and you can change, and they’re really quite cheap. It’s just a subscription. So, you know, places like accessibility and other widgets that are out there. But yeah, it’s a big thing that we say is just start. 

Yeah. Just start, you know, everything else will come. And what we found is actually 80% of our operators who we were their first step. They’ve also continued on their accessibility journey. Sometimes they just need a little push to start. And it can be, you know, it is daunting. It is incredibly daunting to start something when they know they’ve got so much to do. 

And so that first step is often difficult because they’re like, write up 100 things to do, which one, how do I choose? And if I choose them, will I get set up by another group that I’m not working on? But, you know, people who I started working with three years ago now have almost entirely accessible because they put a really good long-term strategy, short and long term and strategy from what was affordable and what was cheap and what was free to things that you know now, people have built full accessible boardwalks around likes. So, you know, they need to see the benefit first, and they also need to do an affordable way. 

Lisa 

You have done so much incredible stuff. But what’s next for Hailey Brown? What are you up to? 

Hailey 

For Vacayit Hailey Brown?  

Lisa 

I know there’s the Vacayit Hailey Brown and personally but, Vacayit. 

 

Hailey 

Vacayit Hailey Brown. So for us we’re looking you know our goal has always been to audio describe the world. The way that we’re going to do that is to set up teams around the world, and get as many tourism operators on board this mission as we can in as many states. So I’m moving over to the US later this year. 

We’re opening up our US office. And we’re hoping to just get through it and do it globally within a couple of years so that anybody can travel anywhere they want with the right accessibility information. 

Lisa 

That’s brilliant. I’ll definitely be a user for sure. 

Hailey 

Thank you, Lisa. 

Lisa 

You are doing incredible things in this space. But who else is really awesome stuff around tourism, accessibility and those sorts of things? 

Hailey 

Yeah, there’s a couple of great organizations across Australia in particular who are doing some incredible work. So one of them, accessible accommodation, by Kerry Williams, you know, funding and accrediting hotels and making them more accessible. So that’s really good if you’re looking for accessible accommodations as a wheelchair user, as my understanding. But she could be doing more than that. 

You know, we’ve got a couple of great advocates in the industry, Martin Heng, who used to be at Lonely Planet, doing the accessibility he’s now doing a lot of, you know, kind of consulting with the Australian tourism Export Council. If you want a physical tool, we’ve got Cocky Guides who takes blind and low vision tours and they take people around Australia. And it’s only for people who are blind and low vision run by Buck McFarlane he is awesome. Wheel the world! Do you know Wheel the world?  

Lisa 

I’ve heard of them. 

Hailey 

Yeah. I was just with them in San Francisco and they are just as incredible as they look online, which is great. They help provide accessible holidays for wheelchair users. And they are probably one of the biggest providers globally for that. And then as far as people in the audio guides space, nobody else is really doing it from a accessibility perspective. 

But we’ve got a couple other audio guide tech companies. Unfortunately, one of my competitors is Kevin Costner, and, yeah, I know, but he’s got this really cool app where it’s a bit more, it’s different, it’s individuals. It’s a bit more user generated content rather than curated content. and that’s across America. And then we’ve got Smart Guide, who are global, who’ve done really good work in this area. 

And then Voice Map, who I think voice map, are the only ones who really work with the destinations and the curated content, but the rest is user generated. 

Lisa 

As much as I don’t want you to have any competitors, I want you to take over the world. It is great to hear that there are other people out there doing good stuff too. 

Hailey 

I think we can all work together. Yeah, yeah, we, you know, I know most of them anyway. Yeah. And we all kind of have the same goal, which is audio describe the world and, you know, as one too many operators in the world to do it alone.  

Lisa 

That’s brilliant. You’ve got to work together for these sorts of things. 

Hailey 

For sure. And I think we’ve all got the same goal. We just need to really push the accessibility front on it from our end, because that’s what we really care about. But I don’t see any reason that we can’t work together, and I can’t see any reason why more people can’t do this. It’s a great business and a lot of operators looking for more people to do it. And I’m pretty flat out. So if someone else wants to do a bit of it – please.  

Lisa 

So if it’s an operator, for example, a hotel or a tourist attraction isn’t audio described do they just contact you and say, hey, we’d like our theme park or our whatever audio described. Is that the process? 

Hailey 

Yes. I just reach out to us, just through our customer form online. and we just get back to on the other thing that you can do is message [email protected]. And then we can send them through a package or jump on a call with them and help them set up. 

 

 

Lisa 

So Hailey do you have any other technology that can help businesses? 

Hailey 

Yes we do. So we’ve recently launched around six months ago, audio player, the reason that we built this audio player was because we went to go upload all of our audio guides onto our website so that people could have more choice, you know, not just the app, but they could also have access to our website. And our website accessibility failed where we’re sitting at, you know, 95% accessibility and went straight down to about a 40.  

And so we started researching and putting in more audio players, and it just kept on failing the accessibility check. And what we realized, is there are kind of no accessible audio players from a screen reader perspective and then also as far as transcripts go. 

And so we can host any audio content in accessible format, for any organization, it doesn’t need to just be people working with us on the audio guides. So we’ve got, a lot of organizations who use, just so they can host accessible content in an accessible way which, I believe, we are the only one in the world, which is really cool. 

I hope there’s a bit more soon. And then you can also white label it to be in your brand.  

Lisa 

Oh, cool. Yeah. So Hailey give us some idea of some of the businesses or organizations that you, you did this great work with. 

Hailey 

So we work with Accor, across some of their hotel brands, particularly the Peppers ones across Queensland, Tasmania. But we’re slowly rolling out across all of them. We have Dreamworld, which we are slowly audio describing the rides. White Ridge Farm and Muji Animal Sanctuary. They, you know, little farms and sanctuaries, in Queensland and northern New South Wales. 

And we’ve got a range of ones like that but we also work with state. So we work with Tourism Tasmania, we work with Destination Gold Coast, where in about 50 of the 70 regions across Australia. So you can probably pretty safely travel to most places, especially Rurally, on the platform. And so we’re pretty built out across the country. 

We’ve got maybe around 500 audio guides that you can access on there.

 

Lisa 

That’s very cool. And it’s good to add that it’s not just the big shiny attractions that get your attention. It is also the tiny little two person farms and those sorts of things. So anyone can audio describe their experiences. 

Hailey 

Yeah. We work with everyone at all levels. Which is, it’s really fun. Like some of the smaller operators, they have really immersive experiences, especially the farms, because you can get the sounds that goats and their sheep. But do you call it in right and say, you know what sounds to look for, which is really fun. Yeah. 

Lisa 

So Hailey you’ve got a few stats around how Australia is going with regard to accessible tourism and the size of the market and those sorts of things. Can you tell listeners what that looks like? 

Hailey 

Well, the stats are changing every year, but as far as this year, in the June quarter last year, the disability dollar for accessible tourism was around 6.8 billion, which equates to around 21% of the total tourism industry for that quarter. So that means people with disabilities are traveling and they are looking for experiences. And they, you know, they typically bring more people, they spend more and they stay longer. 

Which is what that statistic is showing. And so they are a high value traveler, if that’s how we’re going to look at it for the dollar. And, you know, making our business accessible, is going to be good for your business. And it’s also going to be the right thing to do. 

Lisa 

Exactly. And not just for people with disabilities, but again, aging population. People who have a temporary injury needing accessibility as well. And we mentioned this on a previous podcast with Lindsay. But it’s worth repeating. It’s not just about that. That one person in a wheelchair or with a disability, for example, but it’s about the multitude of people that they bring with them, their family, friends, whoever on that experience. So it’s something that businesses in tourism really need to consider. 

Hailey 

And I think they are, and I think we’ve seen a big change in the perceptions of people, with disabilities and travelers, and the families that come with it. But I do I do think for a long time it was a just a lack of education. You know, and I think now that we’re able to talk about it in the tourism industry, and it is on every single panel at every single state tourism conference and at the national state, the national conference run by Tourism Australia. I have seen just that understanding from the tourism operators. It’s significantly greater, than what it was when we started. You know, the conversations that people are having, there are a lot deeper, and the progress and plans are there for these operators, whether they’ve done it yet. But it’s also something they’re thinking about, which is, you know, when I started in this industry, they weren’t thinking about it.  

Lisa 

That is so good to see.

 

Lisa 

So Hayley, what is it about you that’s unexpected? 

Hailey 

I have a hidden disability, so I’ve got short term memory loss. I’m in the first percentile, which they tell me if there was 100 people in the class getting tested for your memory, you’d be the worst. But that was really flattering. You know. 

Lisa 

You and I, the perfect people together for the podcast we’ve both got bad memories. I don’t know how we’ve done this. 

Hailey 

I know, Lisa, and I were laughing before this because we were talking about, we just don’t even know what we’re gonna be talking about for most of the time. And I’ve also got auditory processing disorder, and, you know, auditory processing disorder. I haven’t really ever seen it spoken about, but it means that you kind of just process everything at once. And sometimes it can be hard to differentiate between conversations. So especially loud rooms, it just kind of either sounds like gibberish or one long sentence that doesn’t make much sense. And so I often like disassociated in loud rooms, but there’s a lot of things that you can do to kind of help mask it. yeah. Which been lucky enough going to an audiologist. They’ve really helped me through it. And even Wenita from TedX sent me a Ted Talk of this audiologist who, has actually allowed people to unlearn auditory processing disorder, which I haven’t seen yet. So I’m going to have to check that out because I’m making my life a lot less stressful. 

Lisa 

Yours and mine both. Love Wenita.  

Hailey 

I know, I know that she’s always got some tips up her sleeve for everything because she works with everyone from everything. 

 

Lisa 

Thank you for mentioning that as well, I know you said you had never mentioned it before, but I think it’s important for listeners to hear that after you’ve just done all of these extraordinary things, when at the, you know, white House doing all these great things, smashing the stereotypes that we’re all capable of, of so much. 

 

Hailey 

Yeah, I think I think getting diagnosed helps a lot because it helps make a lot more sense of your brain and why maybe some things are not as easy. It allows you to allows you to focus on how you can fix it and how you can. Well, not fix, but how you can find ways to make it a lot easier for yourself. 

Lisa 

Yeah, yeah, having that team around definitely helps, whether they are audiologists, neurologists whoever they may be. But Hailey Brown, thank you so much for being on the pod today. 

Hailey 

Thanks, Lisa. 

Lisa 

It has been really good to hear about Vacayit. So where can people find you, the Vacayit side of you? 

Hailey 

So you can find us on our website www.vacayit.com it is spelled V A C A Y I T. You can also download the app on Google Play or on the App Store and it’s just Vacayit. You can probably also search travel audio guides if you can’t remember our name. And it probably be up there too. 

And yeah, on our operator’s website. So if you say a tourism operator with a QR code at the door, or at the front desk, make sure to scan it and, you know, check out the audio guides, because they are they’re pretty good. The content team is incredible. 

Lisa 

They are really good. The ones I’ve listened to, a fantastic so encouraging everybody to  listen whether or not you have disabilities, because they add a whole new level of, experience enjoyment to people who aren’t necessarily vision impaired as well. 

 

Hailey 

So yeah, it’s I think it’s a great experience for everyone. I typically read them, because I’ve got auditory processing. So I’ve never listened to one, but I’ve read them all, read them all, and I love them. 

Lisa 

Awesome. Well, thank you again. 

Hailey 

Thank you Lisa. 

 

Lisa 

Thanks for listening to that was unexpected. If you liked what you heard and you want to hear more, then hit subscribe wherever you get your fix. Have any questions or topics that you’d love for us to tackle? Great, email [email protected]. We can’t wait to hear from you! Check out our, show notes for transcripts, video recordings, and find out more about our guests plus the useful resources they share. 

You can reach us on Facebook, Instagram and LinkedIn at YoungcareOz. Let’s not forget an inclusive community is everyone’s business. So let’s keep working together to break down barriers and smash some stereotypes. 

 

Lisa

Are you sick of the same old disability stereotypes? We were too, and we did something about it. Welcome to ‘That was unexpected’, a disability lifestyle podcast for everyone, brought to you by Youngcare and hosted by me, Lisa Cox. Join our amazing guests as we delve into topics that don’t often hit the headlines. So let’s do this. Prepare for the unexpected.

If you low vision like me or have other accessibility requirements, check out our show notes. Before we get started, we’d like to acknowledge the traditional owners of land on which we record. We pay respects to their elders, past, present, and emerging.

 

Lisa

Hello everyone, to carry on our recent theme of travel and tourism, today’s guest is an absolute powerhouse in the travel industry. Susan Wheeldon is the country manager for Australia, New Zealand and Oceania at Airbnb. So welcome, Susan and thanks for joining us virtually from Sydney.

Susan

Thank you very much for having me today. I’m excited to join.

Lisa

Now, it’s really good to have you here. So as I said, you’ve got a really extensive history, one with Airbnb, but you were in the cabin crew with Virgin before that. So why did you decide to go and start working with Airbnb?

Susan

I think I’d been out of travel for about ten years after I’d worked for the airline, and I was at Google at the time, when Airbnb approached me, it was just a really interesting company, one, because it was obviously high growth to travel, which absolutely everybody loves it. It was great to get back into the travel space after almost 15 years working in finance, tech startups, and that kind of space. But more importantly, the thing that actually really attracted me was that Airbnb’s mission is for anyone to belong anywhere. And it’s one of the few companies where that is the basis of every decision that is made in your organization. And for someone who comes from a tiny country town, you know, it’s very easy to feel out of place, whether that’s in a big city.

And I thought, right across the world, there are people, who have the right to feel like they can belong anywhere. And I thought how amazing that this is a company that actually wants to progress that. So for me, it was an easy decision and one I’ve loved.

Lisa

Oh that’s fantastic. So that sounds like a real, I suppose, point of difference. Would you say it is?

Susan

It’s definitely a very mission-driven organization and so there’s a lot of work that happens in the philanthropic space and that kind of thing that is all about, just, I guess, trying to be a positive influence on the world.

 

 

Lisa

That’s fantastic. That’s certainly what we’re trying to do here, you know, in a different way. But also of all the Airbnb, what they call them residences or houses, of all the Airbnb places. How many roughly. And you don’t have to give exact figures. How many are accessible?

Susan

Well, that’s a really good question. We do have that number globally. So we know that we have, verified almost half a million accessibility features in just under 200,000 homes across the world. And that’s done in a variety of ways. We do that through  machine learning. So there’s actually some really clever technology that can 3D scan a photo and understand what’s in it.

And then we do human verification. And the reason why this is really important is we started doing accessibility about 2018. And at that time it was a single accessibility search filter which was wheelchair accessible, which obviously is a great place to start, but doesn’t cover all the needs that that are in the accessibility space. But what we found is, all of our listings are created by hosts, so it’s all user generated content.

And for most hosts, they’re wanting to do the right thing. So they go, oh yes, I’m in a single-story house. My house is wheelchair accessible, but they forgot about the small lip between the, you know, driveway into their front door or they’ve forgotten about the width of their door, because it’s just not a space that they necessarily know.

And that’s why we’ve then moved to this verification program, because we knew hosts were trying to do the right thing, but not all of the time did they know, what was right for them to do through there as well. So that’s part of the reason why we’ve started on the journey. But some of the things that we have done locally, which I’m really proud of, is we’ve partnered with a group called What Ability.

And they provide camps, within New South Wales for, children and their families just to give them opportunities. Experiences allow them to thrive and flourish and to, you know, network and have a group of peers that they can go with. And that’s been really great for us because we’ve been able to find that accommodation that caters to their needs with some of these, accessibility features, searches that we’ve got now.

Lisa

That’s awesome, and I’m really glad you guys recognize the difference. And on top of that, just because someone says is accessible doesn’t necessarily mean there’s anything that’s accessible except for a big driveway or something like that. So was it 200,000 globally that you said were accessible? Cool. How many of those are Australian?

 

Susan

So there’s 165 that is globally. We don’t break the numbers out by country. But then we do have it. So for example, like when What Ability to go to search, they use those search filters and that’s how they find them based on the geographic location that they’re looking for, whether that’s outside Sydney, outside Melbourne, wherever it may be.

But it’s certainly one that we’re, we’re growing, and continue to find ways of how we can get more and more onto the platform. Also part of that is also we now have 13 accessibility search filters. So that’s up 40% globally, that people have been searching for it. So we know that that demand is there.

So we want to make sure that as many of our listings as possible, we know the accessibility features that are in them, but also that we’re able to find more of these properties and bring them on board as well.

Lisa

Yeah, that’s brilliant. And all credit to Airbnb for having and crack having a go. And as you said before, it’s a start. We might not get it right or perfect, but we’re starting and that’s important because so many businesses like oh it’s scary. We don’t know what to do. So we won’t start.

With the Paralympics coming up, they’re looking at accessibility a lot more. Of course it shouldn’t take Paralympics to look at accessibility, it should happen all the time. But looking at Australia what do you think we’re doing right in the accessibility tourism space?

Susan

I think we’re definitely getting more and more awareness of it. And I agree with you. It shouldn’t take a hero sporting event to get that awareness, but it’s great that they do exist because I think then those things do just give people an ability to think about if they’re building a house, if they’re designing a house, you know, how could they possibly do that?

That would enable, you know, future use of the property to be used for that. And one of the things that’s actually quite useful for us, being we’re actually a worldwide Olympic and Paralympic partner, and so we actually use that. So we call it an at events push. So when you have a big event you obviously have a lot more demand.

And so we need more houses. And what we’ve actually done specifically in Paris, which is I think this week that that is launching, the Olympic Games, there is we’ve actually gone and found a thousand listings that have accessibility features in Paris alone, so that we can use that moment to find those listings and bring them on board.

And so that’s a number of initiatives that we do as well as our partners ahead of the Olympics. So I’d like to think in the lead up to 2032, that we’d be able to run a similar program and just increase the number of those homes that have got, those accessibility features so we can support those who have got reduced mobility.

Lisa

That is awesome. We’ll have to get a list of those Paris places with no stairs, because I went to Paris pre disability. But there’s no way I’d get around the now in a wheelchair.

Susan

Well good news is still some with availability, so it’s not too late to head over to the Olympic Games.

Lisa

So in in your experience, what sort of things apart from no stairs, what sort of things are people with disabilities asking for, what sort of access requirements?

 

Susan

So things that we commonly forget about, which is how wide is the driveway and can you get out of the side of a car, in the garage or in the driveway. So sometimes a single garage or a single driveway doesn’t have that space. And the width of the front door is another one or the width of the doors internally.

Because in some buildings, when they put on fire regulations, the door frames have become slimmer. Showers is a really important one. So, is there access for a wheelchair that doesn’t have a lip into the shower or into the bathroom? Are there handrails there as well? Are there emergency alarms. They tend to be more custom-built homes than the average home.

But basically looking at a whole raft of things, and then we continue to obviously have a team internally, who then help us to understand what are the needs and whether or not that, vision impaired, hearing impaired, what any of those pieces, they help us understand how their needs, surfaced in the product, how we can service them better, and how we can help out, how to service those things as well.

So ongoing program, but there’s certainly lots, lots in that.

 

Lisa

And it’s really good to hear that it’s happening and is there a requirement from the house the homeowners too? Is there an advantage of having an accessible home?

Susan

Well, as we touched on, there’s a 40% increase in searches for accessible homes. So the advantage for a host is the more people who can use your home, the more likely that you’re going to get bookings and get booked more often. And then the other thing that I always think about is, you know, you only need to have someone in your family who’s had a broken leg and is in a wheelchair for a period of time, or someone who’s elderly and has mobility issues, and you realize, gosh, I wish when this place was designed that it’d considered that that might be something down the line.

So for us, it’s always, you know, long term future proofing is great to talk to as well. And then there’s those ones which, some of them are slightly easier changes in terms of, you know, whether there’s, bars in bathrooms, that’s slightly easier for someone to adapt to, versus if you’ve got a double storey house, putting a lift in is obviously, something that’s a little bit harder to do kind of post build.

But we continue to kind of understand what the needs are and how do we help use technology and human eyes to understand what already exists. You know, there are 5 million listings globally. And then how can we make sure that if someone is searching for it, a host may not be aware that they have a completely accessible house, because they’ve never considered it?

But if we can help them to understand that helps to grow the space as well.

Lisa

I definitely I suppose if the, if the hosts or potential hosts are listening. I’ve mentioned it a million times. There have been times I’ve gone away with families or large groups that I’m the only disabled person there. But it’s not just about making your place accessible for that one single person. It’s also the two or 10 or 20 people that they bring with them for accommodation as well.

Lisa

Oh, brilliant. Perfect. Now, I might have touched on this question before, but compared to the rest of the world, what is Australia doing in whether it’s Airbnb or generally in tourism that you don’t see the rest of the world doing?

Susan

I think we’re probably quite fortunate that we’ve got some very well-known advocates in the space, and I think people being able to see, someone and to be able to understand the need. And I think I remember hearing an interview with Dylan Alcott, and he talked about hopping on and off a plane, and it never occurred to me about what happens when you’re on a plane and you don’t have your wheelchair. And if that’s a long-haul flight, and how you access a bathroom without a chair on board. And so you’ve been able to have those situations highlighted, I think gives people awareness, and awareness means that people can advocate and make changes. And I think Australians want everyone to get a fair go. You know, we want everyone to be treated equally.

And so I think awareness is the number one thing you can do. The more that people are aware, the more they’re going to help advocate and push for those changes, which, you know, as you said, it’s a journey, but one that we all need to go on together just to make sure that, you know, back to Airbnb’s mission, that anyone can belong anywhere and everyone should have access to anywhere that they need to get access to.

 

Lisa

So a great, great mission that you guys have so do you have any personal connection with disability?

Susan

So probably the closest example I have is when my dad had a stroke. He lost all of the function on one side of his body and he had to learn to speak again. He had to learn to write again. He had to learn to walk again. And I guess it was my first experience of understanding mobility issues or language issues.

And so watching him, you know, saying, I know that’s a thing you put on your foot but couldn’t connect that that’s a sock or, you know, going from someone who is, you know, incredibly mobile and active to then, you know, not being able to walk and having to use a frame. And it just it’s funny because it it’s impacted how I’ve looked at places that, you know, I’ve lived afterwards in terms of, you know, he still struggles with stairs.

So, you know, looking at places now and going, well, actually, stairs are going to be difficult for, for him when he comes to visit, and now he no longer drives. So, you know, all of those things then play into a different type of life. He learned to write with his left hand, which his left-handed writing is actually as neat as my normal writing.

It also taught me a huge amount about resilience. And my dad was in his, 50s when, when that happened, and it could have been very easy to just give up. And the fact that he’s persevered and, you know, keeps pushing through. And I think that’s, you know, anyone who, has a different starting point in terms of, body function, I think you can just see such a level of resilience, and deep strength in terms of having to work so much harder to do things that other people take for granted.

And so that for me, I think was, it was a real awareness of it could happen to anyone at any time. And you just then have to work through and how do you make the best of that situation? And I think, my dad is a typical country guy, and so just that, you know, do what he could.

I know he was never going to get back to where he was, but making peace with, you know, and being really proud of what he was able to achieve.

Lisa

Yeah. Really sorry he had a stroke, but really good he’s back doing what he’s doing now, I suppose you mentioned before, taking things for granted. And I certainly did pre-my stroke and disabilities and everything. Backpacked around Europe, did all of the travel and just took it for granted that I can, you know, get a room.

I mean, a really dodgy backpack joint or anywhere. I never thought twice about it, but now my husband will attest to this, that we have to plan everything meticulously and go and Google 100 times before we can get a hotel room or anything, anything like that.

Susan

And I think that’s part of what Airbnb is trying to take the lift out, is, is you’re exactly right. And we see this journey that’s really interesting and this is across multiple different user groups. But you know, if a middle-aged male was to go on the site, they just go and find a listing that they like.

If a female goes on the site, you generally want to check out the area that it isn’t on the ground floor. You know, you look more for safety features and then if you add on to that accessibility features as well. Is this listing at the top of a really steep hill? Does this listing have easy access to public transport or to, you know, transport that’s available?

And so you’re absolutely right. It just makes it makes everything a little bit tougher. And I think that’s where Airbnb is trying to get to a point where it’s a case of how do we make this as easy as possible, so that you can at least know the things that you’re searching for, are they available or not available?

And hopefully some of those accessibility features then give you a short list. Rather than trawling through thousands of properties, having to visually look at thousands of photos to work out, you know what’s going to work.

Lisa

Through my socials, I saw that the UK was doing some awesome stuff with regard to accessibility, but I believe the same thing is happening over here and you’ve captured that a bit briefly previously, but could you tell us again what Australia Airbnb is doing around accessibility?

 

Susan

So, a lot of the ways that we obviously feed off the global program. So, any of those accessibility features are ones that then roll through to Australia as well. But then things like What Ability partnering with them to provide accessible homes for their camps that they run, and they tend to be for children up to kind of teenage age.

And again, you’re then putting 8 or 10 in a home together who’ve got all kinds of different needs. And so, to be able to help them to find a house that works for them, and they do this fairly regularly, and obviously it moves around where they’re located and so we want to make sure that we can do more of that work.

And the only way we can do that is if we can get more hosts on board. Who can, who can have those search, those accessibility features searchable. And so that for us is an area that we want to keep working on. I think part of that partnership with both the Paralympics and the Olympics is also then making sure that we can use those moments to drive some of the results, and outcomes for that space.

So, work in progress. And I’m sure of those 13 filters, there’ll be more to come, but it’s just, again, making sure we understand what the needs, let them, be shared up through our global product team and then make sure that when they do land that we’re looking for hosts who can then, add those on to their listings as well.

Lisa

And it’s so impressive to hear what’s happening. I know there have been a few times where we’ve wanted to travel and have clicked. Maybe 1 or 2. It’s gone from hundreds of places to stay, clicked on the wheelchair access is only one function, unfortunately on some of these places and suddenly drops to zero. So what? What’s Airbnb doing to move past that or to improve things.

Susan

So that’s the value of using AI. So, if you have 5 million hosts, you’re trying to educate them on what accessibility is or is not, is incredibly difficult, particularly across 200 and something countries and languages. It’s a lot. Whereas if you can and if you had a human to do that manually, you could imagine that would also be, challenging because not all photos are taken equally.

And so using this 3D, spatial, AI technology that actually will allow us then to proactively go and find and say, hey, it looks like your house is accessible, it looks like you’ve got a guest entrance that’s wider than 81cm. It looks like you’ve got step free access to the guest entrance. Bedroom, bathroom, shower. Looks like your car space might be accessible.

In that case, why don’t you add on these filters? And I think that then just allows someone who won’t have considered, or it just won’t have been front of mind to then go, oh, actually, all of that is true, right? I’ll add those things on. And so that way it’s using existing housing which already has these features, but someone who just isn’t aware that their home is accessible and then can, can add it through.

Lisa

Yeah. And I suppose if, a host does want to make their place accessible, does that mean they have an option to speak to a consultant or somebody with that lived experience or is it all AI?

Susan

It’s not something that we’ve got locally to do that. It’s one of the reasons why we do have a team who all have a diverse range of, requirements so that they can understand. And to a point I said earlier, there are people on the site with limited vision. So it’s how just our photo descriptors show up for someone who is viewing a site who’s got limited description.

So there is a group who look at every product and say, for people like me, what do we need? And does this work? And so that’s something that I think you build it in from the start rather than trying to retrofit. So, I think all of that helps us to understand lived experience, not going to be perfect.

We’re not going to cover off everything, but at least it’s giving us a baseline to start from. And similar to starting with wheelchair accessible and then expanding to 13, it’s then that journey of how you we’re not going to get it all right. Perfectly. And we’re going to learn, but we can iterate as we go along and work out, you know what makes the most sense in a market?

What are people understanding? How are they searching? And then how can we make sure that they can find what they need?

Lisa

For sure. And it’s great to hear that there is co-design as well, there are people with disabilities involved in the process from the start, so important. But we’ve heard a lot about professional Airbnb, Susan. But personally, what’s been your favourite place to travel here and overseas?

Susan

Oh, it’s a tricky one. So, I’ve got a couple here. There is a farm stay in New South Wales, outside of Berry, and it’s almost looks like a Scandinavian barn and it’s got I describe it as like Goldilocks and the Three Little bears. It’s got these three miniature beds in one room that my kids absolutely adored.

And it has the treehouse. And it’s just this, like, blissful escape. But it’s only like ten minutes from Berry, so I can go and get the donut from the donut van, which is critically important. That’s probably my favourite one in Australia because I just love easy driving distance from Sydney. The kids have a great time. It’s just beautiful to disconnect but be close enough that you can get all the good, the good food that you want.

Overseas, a couple of years ago, I was fortunate enough, actually, before I started at Airbnb to stay in an Airbnb in Santorini, with my family. And it was this cave house, and it had this pool that overlooked, Oia and the cliffs, and it was just one of those ones where you open up and it was just ten times better than what it looked like online. And it was, which already was great.

And just such a different experience for the kids to be living in a cave that was one that’s, definitely it is a great memory. It was beautiful.

Lisa

Sounds incredible. So, everything you’ve done in the tourism space I ask as a non-disabled person, is there anything that’s really stood out to you was, yes, we need to do something about that, either on the airlines or in hotels.

Susan

Hotels have been fairly good at providing accessible rooms and being generally accessible. So I think they’ve built for that, which has been good. I think they do. An awkward example of the planes one was just one that I’d worked for an airline for five years. I’d never even considered it. And so that for me is, you know, when we think about travel and the fact that everyone has the right to go and explore the world and experience new cultures and different cuisines, and that means that it has to be easy access to Uber, and the same priced Uber, to get to the airport. It has to be easy access through the airport. It has to be easy access on the flight. And that’s the same for vision impaired and for hearing impaired as well. Yeah. And for the broader, and even neurodiverse. Yeah. How do you make sure everyone can have a good experience from, from the start of the trip to the end of the trip?

And I think some parts of that journey, managing quite well and some are a little bit further behind. And, that’s one way that I just think about quite a bit. And it’s funny because any space like that and we have, what we call affinity groups at Airbnb, so it’s a group that you either identify as or you are an ally of.

And obviously anyone at Airbnb is an ally of all the groups. So that would be pride, which is our Lgbtqia+ group or the Asians that it could be black, it could be Jewish, it could be women at wisdom Matters for people over 40. So there’s a few of us in that, and there’s disabled and one of the things that we did there was actually did a dining in the dark experience and your site is taken away.

Just this simple thing of trying to work out where your glass is on the table or where your knife and fork are, or what food is on, what part of the plate. And so I think there’s real value in some of those micro experiments of understanding, you know, if you put an aircraft designer in a wheelchair and said, right, go from the start of the airport onto the plane to the end of the journey, how that would show up in product, I think it would be pretty remarkable and would be pretty pretty quickly changed.

So I just think people sometimes need to leave or get in and be able to have some of that experience to go. Actually, this is really frustrating and challenging and how can we make it better?

Lisa

Yeah, 100, 100%. And we ask all of our guests what about them is unexpected because that’s the end of the podcast. So what about either yourself or your work experience is unexpected?

Susan

A lot is unexpected. I think probably the most unexpected thing is, similar to you, I absolutely love travel. And I started life in a in a tiny town of 160 people. And so for me, I always just scratch my head about how I’ve managed to see so much of the world. And I didn’t do my first overseas trip other than to New Zealand, where my mum is from, until I backpacked, and I was 21.

And that was just the most eye-opening experienced for me. So sometimes I pinch myself and think, how did the kid from the country manage to get around and see so much of the world. And that was obviously the attraction to working for an airline, was someone pays you to go to these places.

Lisa

Susan, you are such a powerhouse and so well known in the travel and tourism industry. Is there any advice that you’d give to people out there who are looking to list with Airbnb, or perhaps just manage hotels in the tourism and space if they want to be accessible but aren’t sure where to start?

Susan

It’s a really good one. I think the reality is, is that everyone wants a place where everyone feels welcome and can join. And so there’s the feel-good element of everyone should be encouraged to make their places accessible and to think about what that means in a broader sense of the word. But there’s a commercial reality as well, which is on Airbnb, those 13 accessibility search filters have, you know, searches using those filters have grown 40% globally.

There is a massive demand for accommodation with accessibility features in this space. So if you’re not doing it, you’re actually limiting the amount of business that you can get. So, you know, I think it’s about understanding what access you have for people with accessibility requirements today. Understand what small changes you could make that would make it more accessible.

And then looking at what’s the longer term structural changes. So if there’s a refurbishment or rebuild, how you might consider building in some of those things at the start. And I think that will go a long way on just if everyone just chips away, I think we’ll find that. Then we’ll start moving to mass, mass adoption and it just makes sense financially to do that.

Lisa

Well said. And just, just chipping away doing little bits, little bits where you can I suppose something I hear occasionally is that there’s a reluctance to make something accessible for fear that it’s just going to look horrendous in a way. Rails and everything everywhere. But that’s not the case. Can you speak to that at all?

Susan

I think there’s I mean, design is incredible these days. Right. And so I think there are plenty of incredibly designed places. And it’s all about just going and finding someone who’s developed or worked in this space before and, and even just getting on Google and having a look. And you can see how well integrated, when things are thoughtfully considered and put in how that, how well they can be done.

So, I think that old adage of like it’s an afterthought just added on afterwards sure doesn’t look right. But I think when it’s built into the design, it can be a seamless, flawless design. And if I even think about shower design today, any interior design going to do today will say nobody wants a lip going into the bathroom.

You stub your toe on it. So, if you have a flush floor, well, that works for everyone and that’s what design is moving towards now anyway. So I think there’s other ways of positioning it. So it’s not an afterthought. It’s actually this is beautiful for everyone. And it has the added benefit of being accessible.

Lisa

That’s 100% right. Universal design it’s not just good for me as a wheelchair user is good for everybody.

Susan

And we all know if you can put the bench seat in the shower, then I can sit down and shave my legs. So yeah, like good design.

Lisa

Susan, it has been an absolute pleasure having you here today, talking about Airbnb and the fantastic work that they’re doing around the world and in Australia. So, thanks again for coming on the show.

Susan

Thank you, Lisa, for having it was a pleasure to join you.

Lisa

Thanks for listening to that was unexpected. If you liked what you heard and you want to hear more, then hit subscribe wherever you get your fix. Have any questions or topics that you’d love for us to tackle? Great, email [email protected]. We can’t wait to hear from you! Check out our, show notes for transcripts, video recordings, and find out more about our guests plus the useful resources they share.

You can reach us on Facebook, Instagram and LinkedIn at YoungcareOz. Let’s not forget an inclusive community is everyone’s business. So let’s keep working together to break down barriers and smash some stereotypes.

 

Lisa 

Are you sick of the same old disability stereotypes? We were too, and we did something about it. Welcome to ‘That was unexpected’, a disability lifestyle podcast for everyone, brought to you by Youngcare and hosted by me, Lisa Cox. Join our amazing guests as we delve into topics that don’t often hit the headlines. So let’s do this. Prepare for the unexpected.  

If you low vision like me or have other accessibility requirements, check out our show notes. Before we get started, we’d like to acknowledge the traditional owners of land on which we record. We pay respects to their elders, past, present, and emerging.  

Lisa 

Welcome back to another episode of that was unexpected everyone. Today we have Emily Dash and Tracey Matchett-Corbet (is that how I pronounce it?), from Bus Stop Films, to have a chat about disability representation in film, media, advertising, all the things. So I’m really here for this conversation and having a chat as well about representation on both sides of the camera. So I’ll start with you, Emily. 

Tell us about yourself, please. 

Emily 

So, Oh, I am an actor, writer, producer, and disability advocate who has been working across stages and screen for about the last ten years. And a lot of my work is focused on increasing representation for people with disability, and also looking at other forms of social justice and how they intersect. I should say, I also identify as a queer person as well, but I’m also interested in, representing community, you know, underrepresented communities that I’m not a part of. 

And working with those communities in, really often work in many ways to improve representation across the board. 

Lisa 

That’s very cool. Sounds like you’ve done a lot of things. And how did you get into the industry and all the work you are doing? 

Emily 

So it’s quite an interesting story. I, I studied, Sydney University and did a Bachelor of Arts in sociology and Gender studies and achieved first class honors in sociology. And then I took a break from uni and academics because I had no life after my honors degree. And I decided that I was going to get into the arts, back into the arts, because I’d always been a writer. But I just had never found opportunities to act or things like this. So I ended up going to various, classes and things and working on my craft. And from there it was just sort of a snowball of trying to be really open to things, meeting people, and just going where the opportunities led, saying that there’s obviously been a few barriers for me along the way in terms of attitudes and all sorts of things. 

So it’s not been completely smooth sailing, but I’m very fortunate to be in the position I am in and also try and make opportunities for others. Well. 

Lisa 

Definitely. And some of those barriers that you spoke about. Could you talk about that a bit more and what sort of things you experienced? 

Emily 

So I think the biggest barriers that I, experience in terms of employment is that attitudinal barrier. So, you know, even in initiatives that I’ve been a part of as an emerging artist, for diversity and things like this often don’t focus on people with disability. You know, we still remain on Australian stages and screens the most underrepresented, group in our society. Particularly for people with high care needs we don’t get represented which, you know, there’s a lot of great disparity representation on our screen and things are improving. But yeah, I really want to push the envelope bit in terms of representing that real high care needs experience. 

Lisa 

Okay. I know Bus Stop Films, Trace, you are doing a lot of really great work around this area, tell a bit more about how Bus Stop Films is helping to employ people with disabilities in film today, and also proactive production. 

Tracey 

Well, thanks, Lisa. So, Bus Stop Films, we have a dedicated business unit called Bus Stop Employment, which is really focusing on supporting people with any type of disability who are looking for work in film, TV and commercial production sector, at the same time working with the industry to build confidence. So upskilling producers in how to make content inclusively, how to support people with disability onset. 

We have these amazing unicorns, our set and training production workers. You understand how production works, but also understand how to support people with disability in the workplace. So they’re not there on set getting selfies with the talent or pitching their project to the director. They know their role. We’re the only employment service that is servicing the screen industry. 

And our services are open to anyone with any type of disability. So we have deaf, disabled and neurodivergent talent amongst our cohort. And it’s about plugging them in, like working with them to identify what their skill sets are, what areas I’d like to work in, what areas they need upskilling in, and then plugging them into opportunities. Because jobs in the screen industry, they don’t advertise on Seek. 

They’re not advertised on employment boards. It’s about who, you know, getting those connections. And so we plug them into those opportunities through our really strong network. 

Lisa 

Awesome. And I’ve known of bus stops a long, long time. First met Genevieve Clay-Smith, one of the founders ages ago. But tell us a bit more about the background and bust up films, how you started, how you became CEO. 

Tracey 

So Bus Stop, started coming up 16 years ago when Genevieve Clay-Smith and Eleanor Winkler together created a beautiful short film called Be My Brother. That film won Trop Fest, which at the time was the biggest short film festival in the southern hemisphere, and their lead actor and the amazing Gerard O’Dwyer, won, Best actor on the night. 

Fun fact the same night that he won Best Actor, Rebel Wilson won Best Actress. Oh my goodness, very Hollywood. And, they developed this beautiful short film in an inclusive way, and they worked with people with disability in crew roles to bring the production to life. And that sort of burst bus stop films, and expanding that into an accessible, full service curriculum, and acknowledging that the pathways to creativity that can really benefit the lives of people with disability. 

I met Genevieve when I was working at Screen New South Wales in policy, and a lot of the work that I was doing there was on, projects and initiatives that supported equity. So I worked on shoots, which was around supporting people. 

Women, to get into more camera and sound roles and as well as the first iteration of screen ability, which supported people with disability to gain employment. Emily, I think you might have been part of that original cohort. 

 

Emily  

I was, way back in the day, I was.  

 

 

 

 

 

Tracey 

Way back in the day! And so I met Gen and I really just loved the premise you know, I’m hard of hearing and, my eldest daughter is deaf, and I’ve been part of the disability community for a long time. Way too long. And, I just love this unity of creativity and social justice. And, when I finished up at Screen New South Wales, and I was working for myself, bus stop approached me to, to do their social media. 

And so I took them on as a client and then a couple of months later they were like, we like you. Would you like to be the CEO? yeah. So that was five years ago. And, it was just in Sydney then. And now we’re grown to a national organization, partnerships across the country supporting, you know, education, content creation, advocacy and employment for people with disability in this amazing industry. 

Lisa 

That’s so awesome. And, actually, before before we go any further, it’s your birthday jumping in mid-way for something completely unrelated. Happy birthday! Sorry, should have said that at the beginning. And Tracey is also an OAM. Which for those outside of Australia, it’s a big deal over here, so congratulations on that for all of the fantastic work you are doing.  

But Emily, well you both work on different sides of the camera I suppose. Emily you work in front of the camera but you also do scriptwriting and things behind the scenes. Do you have a favourite?  

Emily 

Well, people always ask me this question and it’s interesting because you get different things out of acting and writing, particularly different things between stage and screen. so I think, you know, you being in front of the camera is very important because you get to represent your own. Well, for me, I get to represent my own physical experience because that informs everything I do. But with writing I’m able to work with other artists and bring their voices to the front as well, and support them to be creatives. So, for example, I’ve worked on a couple of I mean, bus stop films is a great example because they’ve always been, very supportive of my career right from the get go. 

So and that’s in a variety of ways. So a film that I created, wrote and performed in, in 2020 was a film called Groundhog Night, which did. Well, it’s, it’s a comedy drama about living with high care needs and being part of a family unit. and that was all very inclusively made and authentically done. So really enjoyed that process. 

 

But then I’ve also gone on, to write other projects, for bus stop films, including a film called Valiant, which we made, with north cast around, healthy and respectful relationships when you have a disability. And then I also helped create and write a film called Peaches and Cream, which was specifically around that idea of sexting, being safe in some of those digital kind of mediated relationships. 

So, yeah, acting and writing brings different things. And, super grateful and excited not just to be an independent artist, for myself, but also to work with great organizations like Bus Stop Films. 

Lisa 

They sure do a great job. And Tracey, you mentioned before that you identify someone with a disability or hard of hearing. Do you find that people treat you differently when they when they discover that, I suppose. 

Tracey 

I think they do. I yeah, sometimes they go, oh, you don’t look like you have a disability or but you’re doing so. Well. I think it’s because, with hearing loss, it’s in an it’s a non-visible disability. and it’s funny because I often think about do I wear my hearing aids, for other people’s benefit, you know, like, I’m quite happy with my hearing aids off just running my own life, making up words and filling in the gaps, and lip reading. 

Yeah. it is, and I, you know, I also have, spinal bifida and scoliosis. So I have some other things. But to me, that just part of, you know, that’s just what my spine looks like, and it’s just what my body does. yeah, it is. And I guess too being a CEO, people don’t expect that. 

I mean, my kids call me undercover CEO all the time, and they are like ‘Mum no one would ever know that you are a CEO’  They are such levellers. It’s it’s. Yeah. It’s funny. I you know, you always get wise words from an Uber driver, and I got an Uber driver the other day who was like ‘you disabled people you are always just doing all the stuff all the time now’.  

And I’m like, well, yes, so we should be.  

Lisa 

Exactly. And it’s one of the stereotypes that we definitely need to break down that people disabilities can do so much more than be Paralympians and all the other tiny little narrow boxes and stereotypes that we are put in.  

So Trace and Emily, a lot of things have happened with regards to representation in film and TV, a lot of the plays, but we still have a long way to go. 

 

 

So from both of you, a different perspective as a CEO and an organization doing great things and as a scriptwriter and actor, how do you see this, this going representation of disability? 

Emily  

In the last sort of five years, we’ve seen a lot of really great improvements in representation of people with disability. on screen and on stages. But there’s still a long way to go. And what I really want to see is that these initial needs to improve diversity, one day will not be necessary because, Because it will just be a part of what we do in the Australian, in the Australian arts industry. 

So it’s not that wonderful organizations like Bus Stop Films will cease to exist because, you know, that’s not what we want. We want organizations like that to always be present. But it won’t be such of a unicorn, if I can put it that way. 

Lisa 

Really great point. The diversity quotas, they are great maybe for the short term to get things rolling but I think in the long term we it’s certainly just common sense. And what you do and you don’t need a special program or something like that to include people with disabilities. And Trace from your perspective, how do you see diversity and inclusion happening? 

Tracey 

Well, it’s certainly changing and I like that we are moving in the right direction. We still do have a while to go because, you know, we’ve achieved parity when organizations like Bus Stop Films don’t need to exist anymore. That we just become a regular production company and regular film school program. Still making amazing films. When I first started working at bus stop, production companies would come to me like they were being sent to the principal’s office, like they were being made to hire a person with disabilities and just to be like, oh gosh, NSW screens came to me and said I can’t get this funding unless I hire a person with disability. And they told me to talk to you.  

And now, you know, we have such great demand for our services that we have a team of five people full time just working on employment, which is brilliant, absolutely brilliant, because there’s a desire. I mean, there’s still a lot to go around stereotypes and tropes and this there’s still a long way to go around accessible sets. 

There’s still a long way to go around Who pays for access? There’s still some, you know, conversations to be had. and don’t get me started on the disconnect between the screen industry and employment support under the new framework.  

 

Lisa 

Okay, making a note, don’t ask Tracey about that.  

 

Tracey 

Making a note. that’s my latest advocacy push. But and I think also too the industries and I talk about it in general from TV and commercial production and advertising, seeing the sense and the impact of disability and intersectional diversity around strong storytelling and also around amazing capacity in terms of labor and workforce. So the needle is moving. 

But I think Em spoke to it. I think the biggest barrier is just the attitude and that people have low expectations around still what people with disability can do. so that’s, you know, that’s going to be the last bit that we move. 

Lisa 

Absolutely and your Uber drivers are a great example of that “ oh really your disabled and your, your working your your living life.”  

And so again, a question from both your perspectives. What challenges apart from social attitudes which are have a long way to go. Physically. What sort of barriers Trace as someone onset or as an employer or, someone organizing things behind the scenes? 

And Emily, from your point of view as an actress?  

Emily 

Lots and lots of things. I could talk about this for an hour. You know, it’s a perfect example of, like, when I’m making films, having to find wheelchair accessible location, because we can make all the authentically inclusive stories, that we want. But if you don’t have the infrastructure to support them, and if people don’t put the time and energy into finding the resources that we need, then those stories have nowhere to go. 

And people get exhausted and tired and end up not telling those stories. And the industry is worse off and less colourful for it. You know, when we made Groundhog Night, we had to go through, I think about three different locations before we found the one that we needed, that was beneficial to the story. I was lucky that I had a team behind me that was not going to give up until until we did that. 

So that’s one barrier. That’s my you know, that’s something that I’m working on in terms of making sure we have that infrastructure. But I do want to also go back to the idea of paying people for the time and the energy that they give and valuing people’s contribution. You know, obviously there are times where I’m more than happy to volunteer for things, but when I’m working as an artist, that needs to be valued and, and given its dues. 

So yeah, definitely paying people and also being trauma informed so that when people are asking, people with disability or from other unrepresented backgrounds in the industry gives their personal perspective, being aware of the, how taxing that is that can be on a person. And we’re happy to do it. But making sure that that is valued and made space for and that it does get used in, in a meaningful way because there’s nothing worse than spending the time and energy to give your perspective. 

And then that not being translated into anything meaningful and, and making change. I mean, I could give examples of that, but I think most people listening more will be aware. 

Lisa 

What about you, Tracey? when you’re organizing talent with disabilities on a set, what sort of thing do you tell people to be aware of? 

Tracey 

You know, it is part of our ethos so every set that we make is going to involve people with disability. we, you know, best practice is that they do our inclusion in Action workshop program, which, Em helped us work on to develop. And that’s really about to that’s disability confidence training about from the perspective of, a production of what it looks like. 

We’ve also recently added to it set signs, which is basically Auslan for filmmaking. And we have our inclusive filmmaking toolkit, and they’re three really amazing resources that we share with the industry to encourage that confidence. But it’s also about being prepared, and ensuring that access, and inclusion and that kindness and that inclusion being a safe, a culturally safe space where you can bring yourself to work as it is, is important, to a production and a set, as you know, flagging that there’s trip hazards with cords or, you know, other safety requirements. 

And it’s really, really critical, to have, you know, I, I worked with some deaf talent, amazing deaf talent on Friday and our Auslan interpreters didn’t turn up luckily it’s me. I’m an intermediate signer. I am not a, you know, the best, but, you know, fortunately, because we’re planners. I had that whole script translated into Auslan and recorded, broken down into line by line, and I had it on an iPad, on a stand. 

So, you know, be prepared, being a good producer. So I had that there as a resource. We’d had, you know, amazing lead time with the talent where we had table readings. We all signed interpreters. The team had followed the instructions and learned basic sight, their Auslan signs for set directions. and we got it there. I mean, we had an interpreter turn up in the afternoon, which was amazing. 

 

But we had had to wing it. And that’s really important to me being from that, you know, the deaf community that we have, our access needs are paramount. and that’s always critical, when you’re working with disabled talent, but also that asking for your access needs to be met is not being a diva. It’s just like me. 

I’m allergic to nuts. So it’s just like telling you I can’t have nuts in my salad. You know, it’s just what I need to stay alive. and so I, for your access, needs to be met with in a production sense is not being a diva. It’s just, you know, yeah. Saying what you need to have within a production environment, to ensure that you all you can contribute as a, whether you’re a performer on screen, giving your best performance or you’re a crew member behind the camera, doing your job to the best of your ability, having your access needs met within a production environment is not impossible. 

It might make a producer work harder. I do recall working on Groundhog Night with Emily, and it was my job to find the location, and it was very stressful to find, you know, a house to film in that fit the creative brief. That also meant that Emily could be part of delivering her performance as an actor, but also that she could get to where the lunch was being served, so she can, be part of the camaraderie of filmmaking and working in a team and I did it because we don’t budge. We just don’t. 

Lisa 

And that’s awesome. Awesome. Let’s find one of the lessons there for businesses, not assume that all people with disabilities are the same and that we all have the same access requirements. And that’s that’s a definite no. I’m trying to I suppose what I’m getting at, there are a lot of businesses out there who I might speak to or brands that I work with and like, oh, we want to be inclusive, but it’s too hard. 

We don’t know how. And then they won’t do anything, which isn’t the right answer either. But what’s the one piece of advice Emily’s, rightfully been through a long list, but if you could narrow down to maybe 1 or 2 things, could you do that? 

 

Tracey 

There is. It’s; have a conversation and agree to work together and make it up as you go along. Sometimes you might not get it right. Yeah. So, you know, if you’re really open like we’re going to try this, we’re going to give it a go. We’re open to working with you. And you know, vulnerability and being thing, you know leaning in and say we might not get this right on the first go, but we’re not going to give up. 

So work with us and we’ll do it together. And I think if we approach many things in life, but also, you know, employment of people with disability or employment of anyone from communities outside of our own, if we can, we fully agree to work together. And so I want we’ll work it on together. We might trip, but we’ll pick ourselves up or we’ll look at it a different way rather than just a flat out no, it’s too hard. 

You might have amazing talent, you might meet awesome, skilled people, and you just, you know, might achieve some amazing things. and maybe I’ll just be honest that there’s going to be bumps in the road, and that’s okay. 

Lisa 

Great answer. And, Emily, from your point of view as a disabled person on set, would you agree or have something to add? 

Emily 

A couple of things, I would say is that it’s it’s not too hard. And I would say that if you keep an open mind, I think one of the barriers that people come up against when they’re employing people with disability is that it’s gonna take too much money, it’s gonna take more time, it’s gonna be less efficient for people with disability to be, employed in your organization. 

TCM can tell you that’s absolutely not true. I can tell you that’s absolutely not true. Myself and all of the people with disability that I know who, are employed or also who contribute in any way to society, which is basically anyone, take it very seriously, take opportunities very seriously. And, well, actually be, I would say, better, better workers than, the average, non-disabled person because we know what it’s like to not get those opportunities. 

The other thing that I would say is if you’ve met one person with disability, you’ve met one person with disability. I am an expert in my own experience. I’m not an expert in anyone else’s experience. I do know a lot of things about disability inclusion, more generally. And I’m always working to inform myself about other experiences. 

But when you are engaging with the disability community, make sure that’s broad, purpose built for what you need. A perfect example is, you know. So I live with a high care needs physical disability. Some of my support workers on my team, have other access needs, so they might be, neurodiverse or have very slight psychosocial disabilities. 

And so I would, what about working with those needs and accommodating those needs? Oh, what I find working together is that we both make a contribution to each other’s lives in a way strong before. So I think that’s a perfect example of where, yeah, disability employment is, is really important and can be really well done. 

 

 

Lisa 

And Tracey, you’ve done some incredible work all around the globe with, UNstereotype Alliance as well, which is part of UN women. Can you tell us a little bit more? Have a have a big old chat about the awesome things you’ve been doing. 

Tracey 

Thank you. I have been very lucky to do some exceptional things. So, Yes. Bus Stop films, we are an ally to the, UNStereotype Alliance, which is a global initiative out of UN women that that was birthed out of reading, advertising or gender stereotypes. But it’s really morphed into intersectional, inclusion and really unpacking how we make advertising more or less stereotypical of all the the myths and bias that come from any community group. 

So in Australia, we’re an ally to that. And that, you know, it’s was pioneered by Unilever. so earlier this year, I got to go to New York to the Global Summit of the, unstereotype alliance and speak about bus stops work and our approach to inclusive production and some of the bigger projects that we’ve worked on, some, working on the Unilever, but the global set commitment to have a person with disability on every, production of content that they make around the world and to work with them on the, in inclusive production toolkit, and also to the big project that we worked on over the last four months, which was the Mastercard Touch project, where we worked with the blind and low vision community to create an image less feature film. as part of Mastercard’s launch of the touch Mastercard, which was a really exciting project to to be part of and very exciting for little old me from here in the Shire to travel all the way to New York and talk at the, the United Nations. 

You know, for confident speaker, I was very nervous, to do that. It was very exciting. And, we’re excited now to to be continuing that advocacy work with our upcoming, Driving Change Summit, which you’ll be part of, which Emily will be part of as well. 

Lisa 

Yeah. Really excited that’s happening. Complete disclosure, Emily and I are both a part of it, we are both on the advisory panel for that. But tell us all about it. I know the answers, but tell our listeners.  

Tracey 

So later this year in November in Bondi, which is Australia’s little bit of Hollywood, will be hosting the first ever, employment summit looking at disability employment across film, TV, and advertising. And I got the idea because last year there was a summit in Canberra around employment, which is awesome. And I really wanted to be part of it, but only two people from the screen industry were invited, and often the screen industries overlooked around employment policy, because people don’t often think about people with disability working in the creative industry. 

Go figure that we would want to have jobs and creative industries. and I you know, I was like, that’s such a shame that, you know, those two people from the screen industry who got invited and neither link with disability. So I just thought, why don’t we just make our own summit? You know, if you don’t get a seat at the table, build your own table. 

 So we did. And it’s been amazing to come together. And I’ve had great support from the screen Australia and Netflix and Screen New South Wales to, to support it over two days to really elevate, celebrate and explore. What does disability employment look like? What’s the role of government? What’s the you know, what’s the experience of the deaf community, which is more than just Auslan and captions? 

What’s happening within the First Nations perspective? what’s happening in advertising? I know that, you know, you’re hosting our panel for the UN Stereotype Alliance and really doing it in a way that’s commensurate with how the screen industry comes together. When the screen industry has a conference, it’s sexy, there’s welcome drinks, there is a really lovely location. 

And I’m not, and I’m sure Lisa and Em you’ll appreciate often disability events are in a scout hall with a coffee and a packet of biscuits. They’re very bland, but we wanted to make sure that this event looked and sounded and felt like a screen industry event. And so we’re, you know, we’ve got Hannah Devaney and the team from, Audrey and Job Axes coming along to show us the beautiful film that Hannah stars in, but also talk about, job access, support of the feature film orgy because it was the first screen production, that job access supported. 

So I want to know what’s the magic ingredient that unlocks that support and really hear from the people in the know the knowledge makers, the policy makers, the creatives. We have over 50 speakers with more than half of them, people from the disability community from across Australia. And we’re also bringing out Keely Kat Wells, who is amazing advocate for disability representation in Hollywood, and is the co-founder of Making Space Media. 

And she’s been doing a lot of work with, you know, Netflix and Hello Sunshine to really move the needle on disability representation in Hollywood as well. So I’m really excited for it, that we’re bringing in disability community to Bondi to really, you know, move the needle, bring together, have a conversation and get some things moving. 

Lisa 

Yeah, Keely is doing some really great things. And I’m so excited that you’re bringing both of the worlds together because so often it’s it’s one or the other all the people with disabilities in a hall talking about our stuff, or all the people from the film industry in a big fancy shindig talking about their stuff. But we need to work together.  

Lisa 

So tell me about inclusively made, which I am super excited for. How long has it been going for?  

Tracey 

So inclusively made was officially launched, earlier this year, and it’s the brainchild of Henry Smith and Genevieve Clay-Smith from Chase creative. And, question is the co-founder of Bus Stop Films. and it really is about the benchmark of what does an inclusive made production look like. And working with brands and productions on a point system to certify their production is being inclusively made. 

So as a consumer, when we watch that, and if you watch the Buper ad that’s out at the moment around the Paralympics, if you look at the bottom right hand corner, you’ll see the little inclusively made icon that tells you that that piece of content was made with the contribution of people with disability at every step of the way. 

So, you know, in script development, in casting, and in crew, that production recognized the contribution of people with disability. And it’s it’s similar to the Heart Foundation. Tick. You know, when we pick up the box in the supermarket, we know all this is a good product for me because it’s gone through a process. When you watch that piece of content, you go, oh, I know that that and or that TV show was it was made in partnership with people with disability because it’s got that little inclusively made logo on it. 

Lisa 

That’s brilliant. Absolutely brilliant. I love that Buper ad actually acknowledge the fact that we’re not just here talking about disability while the Paralympics is on, but we are here 365 days a year. Credit to the copywriter, whoever it was on that case, it’s a really, really great shot.  

 

Lisa 

So now both of you. Awesome question. But from your different perspective, what advice would you give to someone who wants to get into the film industry and on either side of the camera. 

 

 

 

Emily 

When I first started as an artist, I did not feel that the industry was so friendly to me. I wasn’t sure whether there was a place for me as a professional artist. So the first thing that I would say is, you are welcome here and we need you here and you can make a great contribution and there is space for your stories and I can’t wait to hear them. There are really brilliant examples around other artists working in this space and so most of us are pretty amenable to getting in touch with us. You can get in touch with organizations like Bus Stop Films. Look at resources, like, the toolkit bus of films has made. 

There are other resources around for emerging artists as well. But mostly once you start out with that kind of research and with that attitude that there is a place for you, just being open to, opportunities going where things take you try and meet people being upfront about your access needs, because I know it’s difficult, but there’s no shame in needing what you need to do your job. 

So yeah, it’s a long journey, but it’s a really beautiful one and I can’t wait to see who else can be involved in that. 

Lisa 

And you Trace? 

 

Tracey 

More my hints and tips for this crazy industry. Make friends and be kind. It is an industry based on relationships. And who you know, but they, you know, and that that makes it challenging because there’s no there’s no linear way to get into the screen industry. and that can be a even more challenging if you have a disability because, you know, we’re often not invited to the networking drinks where the deals are made and the jobs to get picked up. 

So join up Bus Stop Employment. So our employment service is open to anyone with a disability looking for work across film, TV, commercial production, but also I don’t encourage people to work for free in any stretch, but it is about getting to getting connected. You know, we all start out in this sector, maybe volunteering on our production and meeting people, and getting to know people, you know, volunteering at a film festival or a conference like screen forever is a great way to, to meet and connect. 

But also, you know, back yourselves, have a conversation with the screen agencies in your state. reach out to bus stop, come along and meet our teams, come to our showcases, get connected. There’s a lot of great Facebook groups that both Em and I are in. cafe is one of my favorite ones, which is about disabled creatives and connecting. 

And this is an industry where two people connecting and coming together and sharing and ideas can really fruit something. so, you know, there are challenges to that, but there are beautiful wins as well. So, you know, connecting with others that are also, you know, creating content or creative people, not necessarily just other people with disability, because that’s quite limiting and the best opportunities. 

And I think projects come when people from different walks of life collaborate together. But really, you know, connecting, joining a Facebook group, getting, going to film festivals, making friends and just putting yourself out there a little bit, I think is it’s a great way to get into this industry because there is no standard pathway in it’s not like being a plumber that you do your, you know, you look up the job on, on and you apply for the apprenticeship and you go to type and it’s very straightforward. 

There’s just so many ways to and that doesn’t work like that. It’s only ways to get into the industry. but it really does come down to relationship building. 

Lisa 

Oh for sure. And going back to what you said about being kind as well, just a decent human being, that doesn’t hurt either. 

Tracey 

It’s it’s my, my best, biggest piece of advice because it’s not an industry known for being kind, but the reason I feel that I’ve got ahead and Bus Stop has grown so much is because we, you know, we don’t budge on being kind. 

Lisa 

That’s a good, good one. And all of those resources and everything that you mentioned before is the one place people can find those, if they’re looking to get, get on board with, Bus Stop, be it as a business who wants to make an inclusive production, or someone who wants to be a camera operator or an actor. 

Tracey 

So drop onto our website Bus Stop Films dot com dot au. You can find out information for employers, that can find out information from people looking for work, and find out the information about our Accessible Film Studies program, and also about the upcoming Driving Change Summit. 

Lisa 

And Emily what about you, what’s the best way for people to find you and learn more about everything?  

 

Emily 

You can look me up on Facebook and Twitter and Instagram. Emily Dash artist and advocate. Again, I’m very open to having conversations. If people want to work with me or if they’re looking for opportunities, I’m very happy to sort of broker those relationships and people that they need. very excited about the driving change summit in November, which I will also be really speaking at and on a panel for so you can send me there as well. 

I am also, doing you show up in Sydney. I’m doing a show Sydney Fringe Festival in September in a couple weeks, called Em and Maddie solve your problems, where I will be working with a beautiful comedian by the name of Madeline Stewart who you will also be able to see at the Driving Change Summit.  

So it’s all a very full circle moment that, we’re all coming together, so it’s very nice. 

 

Lisa 

Excellent, you’re all over the socials.  

Emily 

Yes. 

Lisa 

And we always ask our guests at the end of every ep – what’s one thing about them that’s unexpected? So I’ll start with you Trace. new tricks. 

 

Tracey 

What’s one thing about me that’s unexpected? Oh, I really, really love my footy. And I’m a huge Cronulla Sharks fan. And yes, I was there that day in 2016 when we won the grand final against Melbourne Storm. And yeah, I’m a bit of a footy lover. I’m a footy tragic actually. I love my NRL. 

Lisa 

Closet bogan. 

Tracey 

Closet bogan, I own it.  

 

 

Lisa 

I know nothing, I know absolutely nothing about football, so I have no idea which game you’re referring to. But I’ll, I’ll take it that it was the big one and and Emily what about you is unexpected. 

 

Emily  

Well, I’m not sure that this is unexpected, but I’ll just go, cause Tracy talked about being a footy fan. The big thing that I’m a fan of is Taylor Swift. And that’s a huge part of my identity. And it’s almost you have people that say it’s an obsession. So I do have an obsession with Taylor Swift. 

I am very loud and proud of that. If you look me up on social media, that’s probably what you’re going to hear about. 

Lisa 

Were you at her concert, when she came to Australia? 

Emily 

It was one of the best nights of my life. Oh. So. Yes. yes. So that’s me, big Swifty. 

Lisa 

Tracey and Emily, thank you so much for being on the podcast today. Your experiences are just phenomenal and look forward to seeing and hearing about what you’re doing in the future. 

Tracey 

Thank you. I couldn’t think of a better way to spend my 50th birthday than chatting to you two legends. 

Lisa 

I can’t believe you took the time out of birthday celebrations to speak with us. We’re honored! You’re a legend Trace. 

Thanks very much Emily! 

Emily 

Thank you! 

 

 

Lisa 

Thanks for listening to that was unexpected. If you liked what you heard and you want to hear more, then hit subscribe wherever you get your fix. Have any questions or topics that you’d love for us to tackle? Great! Email [email protected]. We can’t wait to hear from you. Check out our show notes for transcripts, video recordings and find out more about our guests plus the useful resources they share.  

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