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Text reads "a podcast about disability with Lisa Cox and Youngcare"

Lisa Cox, an award-winning writer, presenter, and disability advocate, is sitting in a manual wheelchair. She is wearing business clothes: a black suit jacket and pants, and a blue shirt.

Welcome to the “That Was Unexpected” Podcast!

Join our host, Lisa Cox, an award-winning writer, presenter, and advocate, as she delves into the everyday experiences of people living with disabilities. We’ll explore topics like sex and disability, representation, and accessibility in our communities. With expert insights, personal stories, and practical tips, this podcast is a must-listen for anyone seeking to understand, support, and celebrate disability and inclusion.

Get ready to challenge your perspectives on disability and embark on a transformative journey. From fostering understanding to promoting inclusion, “That Was Unexpected” invites you to join the movement toward a more diverse and inclusive world. Don’t miss out on this insightful and engaging exploration of disability in our society.

Welcome to the “That Was Unexpected” Podcast!

Join our host, Lisa Cox, an award-winning writer, presenter, and advocate, as she delves into the everyday experiences of people living with disabilities. We’ll explore topics like sex and disability, representation, and accessibility in our communities. With expert insights, personal stories, and practical tips, this podcast is a must-listen for anyone seeking to understand, support, and celebrate disability and inclusion.

Get ready to challenge your perspectives on disability and embark on a transformative journey. From fostering understanding to promoting inclusion, “That Was Unexpected” invites you to join the movement toward a more diverse and inclusive world. Don’t miss out on this insightful and engaging exploration of disability in our society.

Headshot of Lisa Cox, an award-winning writer, presenter, and disability advocate. Lisa is wearing a red top, and black suit jacket. She's sitting in front of a podcast microphone, and is wearing recording headphones. She also has a takeaway coffee cup in her left hand.

Meet Your Host, Lisa Cox!

Why is Lisa Cox the perfect host for this podcast? Lisa Cox is an esteemed disability advocate, author, and media professional dedicated to improving disability representation in mainstream culture. She has garnered international recognition and awards for her impactful work, collaborating with various organisations and individuals who share her vision. Lisa’s contributions have been featured in prestigious publications worldwide, and she currently serves as a Disability Affairs Officer at Media Diversity Australia.

Make sure to follow Lisa on her social media and check out her website:

Meet Your Host, Lisa Cox!

Why is Lisa Cox the perfect host for this podcast? Lisa Cox is an esteemed disability advocate, author, and media professional dedicated to improving disability representation in mainstream culture. She has garnered international recognition and awards for her impactful work, collaborating with various organizations and individuals who share her vision. Lisa’s contributions have been featured in prestigious publications worldwide, and she currently serves as a Disability Affairs Officer at Media Diversity Australia.

Make sure to follow Lisa on her social media and check our her website:

Episode 1: Intro About Youngcare and Lisa Cox

In the introductory episode of ‘That was Unexpected’ Lisa speaks to David Conry; Founder of not-for-profit Youngcare, and Greg Johnson; CEO of Youngcare. We will hear about the formation of the NFP that has changed the gap in care provision for young people with disabilities, and the future of its important work.

View Transcript

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!

Episode 2: People with Disabilities have Sex!? (Pt 1)

What!? People with disabilities have sex?? – YES, of course! Then why is positive sexual health for people with disabilities a taboo topic? Lisa, Dr Marita Heck and Todd Winther explore all the juicy details about sex and intimacy for people with disabilities.

View Transcript

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.

Episode 3: People with Disabilities have Sex!? (Pt 2)

If you listened to Part 1 of this episode you will know that people will disabilities do indeed have sex *gasp*! In Part 2, Lisa continues her chat with Dr Marita and Todd about all things sex, intimacy, and disability.

View Transcript

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!

Episode 4: Inclusion in the Performing Arts

While 20% of the Australian population have disabilities, our film, screens, catwalks, and stages significantly lack adequate representation. In today’s episode, we hear from actress and model, Maya Dove, and Victoria Wilson – Division Lead for Zebedee Talent, the world’s leading inclusive talent agency.

Lisa and our guests unpack the consequences of this underrepresentation for people with disabilities and discuss how brands can adopt an inclusive approach. If you’re a person with disabilities eager to see your name in lights, Maya and Vic have some great advice for you!

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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.

Episode 5: Unseen Victories: Beyond the Paralympic Glory – (Pt 1)

What advice would a Paralympian and Elite Adaptive Athlete share?
You might be surprised!

In this two-part episode, Paralympian Ryley Batt and Elite Adaptive Athlete Natasha Price, open up about their personal journeys, challenges and triumphs.

Content warning: this episode discusses sensitive topics related to eating disorders. Please proceed with caution and prioritise your mental well-being.

View Transcript

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.

Episode 6: Unseen Victories: Beyond the Paralympic Glory – (Pt 2)

Lisa continues her chat with 2024 Paralympics qualifier, Ryley Batt, and Gold Coast Para Sport Star of the Year, Natasha Price.

Our impressive guests use their lived experiences to share tips on prioritising mental and physical health.

You won’t want to miss this passionate discussion about the realities of life as an elite athlete and sporting champion.

View Transcript

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. 

 

Episode 7: The Power of Friendship – (Pt 1)

Have you ever wondered what would happen to your friendships if you acquired a disability?

For these three best friends, one life-changing event altered the trajectory of their careers, their friendship, and their entire outlook on life.

This two-part episode promises a heartwarming and unexpected tale of male friendship and insights into the latest discoveries in spinal cord injury research.

View Transcript

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. 

 

Episode 8: The Power of Friendship – (Pt 2)

In part two of ‘The Power of Friendship’ we delve a little deeper into Tim O’Shea’s spinal cord injury research and Dr Beer’s insights into spinal surgery.

Ben reflects on the initial days after his injury and shares some unexpected truths. If you haven’t listened to part one yet, go and check it out first!

View Transcript

 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  

 

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