Paralympian and Advocate Don Elgin on Building an Inclusive NDIS

In this episode, Paralympian, author, and advocate Don Elgin joins Peta to explore what true connection means within the NDIS and beyond.

After representing Australia at three Paralympic Games and winning four medals, Don turned his focus to advocacy. As Head of Events at One Community, he now leads more than 120 networking events each year, connecting participants, carers, and providers to improve outcomes across the sector.

Peta and Don discuss how tools like Kismet’s Care Index are exposing service gaps, why transparency matters for a fairer NDIS, and how regional communities can become more inclusive. They also look ahead to the Australian Disability Service Awards, presented by One Community and Kismet, held on Thursday 13 November at The Pullman Albert Park in Melbourne.

Connect:

One Community:

Website: onecommunity.net.au

Instagram: @onecommunityaus

Explore the data: kismet.healthcare/care-index

Australian Disability Service Awards: onecommunity.net.au/adsa

Peta Hooke:

Instagram: @petahooke

Website: www.icantstandpodcast.com

Email: icantstandpodcast@gmail.com

Another episode you might enjoy: https://www.icantstandpodcast.com/post/get-started-creating-a-roadmap-for-newly-disabled-people-with-mandy-mccracken

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Episode Transcript:

00:00:03

Peta: Hello, and welcome to the I Can't Stand Podcast, the show that explores what it's like to live with a disability. I'm Peta Hooke, I have cerebral palsy and I'm your host. Each week I sit down with remarkable people who has lived experiences and perspectives are reshaping how disability is understood, not just within our community, but by non disabled people too. This week I'm joined by Don Elgin, a paralympian and motivational speaker. Don has represented Australia in three Paralympic Games, winning four medals, before shifting his focus to advocacy and leadership. He is now Head of Events at One Community, sort of like a speed dating event company that help disabled people with NDIS providers. He drives connection and collaboration across the disability sector to make sure disabled people are better served by NDIS. Also, we have a very exciting event coming up in the disability community, the Australian Disability Service Awards, presented by One Community. The Awards celebrate innovation and excellence across disability services and will be held this Thursday, the thirteenth of November at the Pullman Albert Park in Melbourne. In this conversation. We explore what it means to be a paralympian, what Don thinks about disabled people being sort of pushed into the area, and how you cope post a Paralympic career. So, without any further ado, let's get into it.

00:02:06

Don: Peta, my name is Don Elgin, and I am ridiculously excited to be with you on the I can't send podcaster. It is one of these opportunities that somebody like me who is born without the blow half of my left leg and born without a thumb on my left hand. My fingers on both my hands were stuck together pretty early. I had open heart surgery at about three years of age, had a couple of bumps along the way. But somebody like me, who can stand and often falls over, is reminded that it's a privilege to be able to stand, and it's a privilege to be able to share, you know, my last the life I'm living with you and with other with your listeners. So I'm excited to be well.

00:02:46

Peta: I can just tell you full of sunshine and you know, full of positive energy, which I was just so love and resonate to. So this is going to be a great conversation. I have absolutely no doubt. So you started from the beginning and you spoke about your disability, which is totally your right. I never expect the people speak specifically about their disability, but I love that you went there. So how was your disability framed to you growing up, both by your family and also medical professionals.

00:03:18

Don: My parents never tried to justify or make sense of what wasn't there. They went very clearly and quickly to, well, let's focus on what is there, because even if we have the answers, it's not growing back, it's not going to change. What matters is what you can do, so when you fall over, you get back up and have another crack. My life has been one that my parents decided that I was going to fit in with the world I was living in, not the other way around. Not the world was going to adapt and evolve for me. Of course, they did all the right things that a parent would do, which has take me to the hospital for the multiple amount of surgeries that I had as a kid growing up and get me a new leg. And I grew up with a very can do attitude more from my parents, but I certainly adopted it and thought, well, that'll suit me. In my childhood, I remember two places, Tokable and the Children's hospital, so in and out of both of the hospital, and in and out at school, mostly because I was gone for operations. So every time I went to the hospital, I mean, in this world of at home where Donnie are just like everybody else, then all of a sudden you're in hospital and there's other kids missing bits, or there's other kids that are in a wheelchair. To go, oh wow, I don't say this every other day. So there was that sort of I suppose question when somebody says you like everybody else, but then you know different. You know that everybody else doesn't have to put a leg on when they wake up in the morning, and then you start to get glimpses of that world. That's when you start you have questions. But then it was probably sport. It was my finding sport that really opened my eyes. Gone, wow, there's a whole new world out there that I didn't even know existed. So the hospital gave me a glimpse. And the other place that gave me a glimpse into this world of amputees was the leg joint, where I'd go to get my new legs made, and I would get a lot of legs. Like most years, i'd have one go through puberty, i'd have a couple that time. And then of course after I had operations to have my leg shaved, which is basically because the bones in my shin, my tiberia and phibia would keep growing and if left unattended, would effectively grow out the end of my stump. And what was really cool about that operation not much, but what did become cool was that my doctor learnt this procedure and I was the guinea pig. I was the first one in Australia to have it done where they took some gristle from my hip and transplanted it to the bottom of my stump and it slowed the bone growth of my stump and so it meant that I no longer had to have that operation. So that was a that was a really cool thing to be able to be exposed to that sort of innovation technology, and when you're around that, it creates an appetite for it. You're interested in, Wow, what else could we do?

00:06:13

Peta: Have you always been this confident person?

00:06:16

Don: Don No, At eleven years of age, I was completely the opposite. I finally made it in I was at Tokmo Public School, finally made it into the footy team to go and play another the other team at the other school, and that day I just copped it. I got teased beyond belief and it got to the point that it was bullying, and there's a big difference between being teased and being bullied, and to be honest, I didn't have the coping mechanism. So I really really struggled, and for a tiny little window in my life, I didn't want to live. I hated my life and I was really resentful that it was it was me in this situation. And I remember being at home that night. I sat in our little kiosk. My parents ran the Tokmol Caravan Park and swimming pool complex, so we had a little kiosk and our house was in the middle of the caravan park and the public swimming pool. And I'm sitting in there and I was crying, and I was crying because I couldn't decide which way I was going to end my life, Like I hated my life so much at eleven years of age, when you just can't cope because you haven't got the skills yet they haven't been developed. I just wanted out, and I remember being there really clear, like it was yesterday, and Dad walked in. I'm sitting on three boxes of Coca cola. This is how clear it was. I was a freezer one side, a big chest fhraze of the other, and I'm crying. Dad said, what's wrong, mate? Why he's sucking? Said it's not fair, Dad, Why did it have to be me? Why not my brother or one of my sisters has got three of them? Why do I have to be the one with one? Leag And what Dad said next was a game changer. He said, mate, why not you? You've got a good attitude. You can deal with it. It's only a bit of your leg. And then he walked off. He didn't answer it or anything that. He just let me with those questions. And up until eleven, I hadn't considered attitude good, bad or otherwise. It just wasn't on my radar. But Dad said I had a good one, so I owned a fact that I must have a good one. It's only a bit of your leg, all right, all right, only a bit of my leg? Yeah, okay, imagine if it was both my legs. So here's me, as an eleven year old, just running the arithmetic of all the things that were worse than a bit of my leg missing match. If it was both my legs and both my arms, man, that'd be tough, matine. If both my legs both my arms that I couldn't see. And then all of a sudden, this list of what it could be was stacking up, and I've just been able to in the instant reframe that exact same situation. Holy crap, How lucky am I that it's only a bit of my leg that I was born here in Australia. So reframing was a new tool that I learned in that situation because of the reality. And my dad said, mate, it's only a bit of your leg. You can deal with it. You've got a good attitude. And that was the starting point for me deciding, well, how do I want to live? You know, I don't want to live devastated every day. I want to get the most out of my life. And so that's where the beginning of me attempting to change the way I see the world just started to kick in. So I haven't always been like this, but I'm continuing to work on it every day, and it gets easier and easier to.

00:09:24

Peta: Be honest with hindsight, we can always think our parents did a great job for what they had at the time and the knowledge that they had at the time. And I think we both worked out okay, And I think that's the main thing. But is there anything that you would do differently now now that you understand possibly things like how the medical system views disability versus the social model of disability, things like that, Is there anything that you would do if one of your children had a disability?

00:09:57

Don: The cracking question. Mate. To be honest, I go back always to fault to what worked, and in my opinion, I'm going, all right, man, I'm the happiest bike I know drug for e. Every day I wake up, get you up. You know I've got another chance of another day. And what am I going to do with it? So some things are timeless and we'll never get old. Some of those things are decency and manners. Some of those things are a bit of tough love when we need it. But what we tend to see is we tend to see a lot of the tried and true and proven ways being being suppressed, and we become almost too soft to be able to deal with what's going on. And for me, I look at it and the same with bullying. Let's take bullying right if we if we think we're going to stop bullying, we are kidding ourself that is going to exist. But what we can do is we can train ourselves and our kids and people to be able to be resilient so that when life deels what it will deal, if we can get rid of a bit more bullying, bloody great. But the truth is we're never going to get rid of all of it. We're never going to be this ideal world. So what we should do is conditioning ourselves to be able to cope in the world that we're in. And for me, that's good and I think that will serve better than putting all our energy into this tiny, little potential gain of changing something that's probably never going to change in our lifetime anyway.

00:11:29

Peta: I think resilience in kids are so so important. But I'm surprised that you also didn't say, considering you are a motivational speaker and clearly so articulate and able to communicate so effectively, that you didn't say it was about educating non disabled people to maybe not bully us.

00:11:51

Don: I'm a big believer that if I can be comfortable and happy with my situation, then I'm going to help others be comfortable to ask for responsanctful questions to be happy in their situation. I don't want pity, and I don't want anyone to pity mean I don't. I never use my disability for gain, although I say don't use it for game. We get some of the best car parks in the country. Mate, that is a big win. But I must admit that the education happens all the time. And if we're invisible, it's a whole lot harder to educate to influence. But if we're visible and we're living our best life and we're doing it, we're asking questions, we're doing all the things that we would like somebody else to do, then there's the education right there.

00:12:37

Peta: It's so clear to me why you became an athlete. You just have that positive mindset to really have to you know, overcome challenges, dig deep, have that resilience and also that knowledge in yourself that you can achieve and do things to the best of your ability. How do its sport? Your relationship sport develop.

00:13:02

Don: When I first started anything to do with disability sports or disabled sports, I was really really confronted. A couple of my mates come to me at high school said, Donnie, why don't you go to the Paralympics. This is back in nineteen ninety, right, so probably a bit before you were born pitter and he he said to me you should go. I said, what are you talking about, mate? What are they? And they said, oh, they're games for disabled people. I said, look, don't go to those. Remember I've been raised an able body kid. And he goes, what do you mean you can't go? I said, well, I'm not disabled and he goes, fait, you've got one leg, fake you're disabled? And I thought right, And I said, does that mean I'll get to go overseas? And he goes, yeah, if the Olympics are overseas, sell the Paralympics And I thought, how good would that be? Dad grabbed out the Yellow Pages. We went through. We found the Ampte Association of New South Wales. We made contact and then the first opportunity I had to really get involved was the New South Wales. I was Amputee Championships, so off whed trot. Remember I said, my parents ran the public swimming pool. I can swim very well. I swim without my leg on. And all the way up to Sydney, I kept thinking to myself, I'm going to swim against disabled people. I'm not really disabled. I'm getting with everything right. So I felt a bit like a cheek because I thought, ah, this is not right. Anyway, I got up there and the greatest turning point happened bang right there at that carnival, and that was that I won two events, but more importantly, I got my butt kicked in the other three events. And that was the turning point for my parents to realize that disabled doesn't menu useless. Owning disability, putting your hand up and saying I need some help. I've got a disability, whatever it might be, is not necessarily a bad thing. We don't have to fight to not be disabled. It's okay to fit in, and it's also okay to ask for help, and it's okay to be you. And that for me was a great moment because, as I said, my dad's one of the toughest bikes I know, so for him to see that there was an opportunity for me in this world of disability. But importantly for him, he didn't want anything for me that I didn't have to work for. He liked this thinking that if it's worth having, it's worth working for, and he straightaway could see that I'd have to work to be amongst it. They took twelve amputees to represent Australia in nineteen ninety two in swimming. Unfortunately for me, I was ranked number thirteen in Australia, so I missed out on that spot by one spot and it was a bloody tough lesson. It was a bitter pill to swallow because like in my head, I thought I'd done the work, I'd deserve to be there, and that was my first reminder about just because you'd think you deserve something, it's not a given that you're going to get it. So it was a big reality check for me. It was at that point that I made the shift from swimming to athletics. And although I didn't get paid for it, it wasn't like a professional athlete, but it was the thing that drove me enough to be able to get out of bed and train and come home late because I've been at training. It was a founder passion I've taken up sport again. I retired and I've got a really good made of mine, Amy Winters, and we both have taken up the sport of shooting. I've taken up pistol shooting and it's super exciting. I'm sort of trying to weigh up and research if it's been done before, if any athletes on the planet have ever competed in two home games. I don't know if they have, but there is an opportunity obviously with Brisbane coming and me in this sport. I'm very driven. I don't know if I'll be good enough, but I'm not gonna bloody go. I'm wondering. So that is the goal. The goal is to see if we can make it to LA in twenty eight and then to be able to march out with Australian team Brisbane in thirty two, so stay tuned for that, mate.

00:16:54

Peta: I find it really interesting that you've decided to go back into sport because clearly it does fulfill something in you, and you're clearly so excited, like I can just see it in you, and I really hope what you're working toward's happened for you because you're clearly so passionate. Was there a grief when your first original career in being an athlete finished? How did you go about stopping that part of your life and fully integrating into a different career. Like I know you said before that you weren't paid as an athlete as you should have been, so you probably already had your career going in the background as you were doing both at the same time. But how was that transition for you?

00:17:40

Don: Yeah, it's a wonderful question. Someone would ask that question with a lot of knowledge about the fact that when you have highs in lows, whether their career highs, whether it's having a child, whether it's you know, having a wedding or a big holiday. When you have that pinnacle that you've set all your time and energy towards pursuing and then you complete it, the reality is there's a big drop off. There is a big drop off and unfortunately we've seen a lot of suicides since the two thousand Paralympic Games. There's a lot of people that represented Australia that are no longer with us. There's so much to be said for where we allow our identity to be formed, and many athletes will find themselves being the athlete, and don't have much of an identity about themselves outside of that. They haven't thought about it. I'm a father of four, I'm going to be a granddad in January. It is bloody exciting. And I'm a husband, I've got a career, I'm a speaker. I'm really comfortable with me in my own skin. And that is the thing that because I think I've always been busy. I've always been you know, even when I was pursuing my athletic career, I always had many speaking engagements, so there's always something else to look forward to. So I think that is one of the things that helped me avoid that massive, you know, post games blues or the depression that often comes with it, is having things to always look forward to.

00:19:09

Peta: I really want to talk to you about because you know, the transition from what I what I've heard with athletes, whether they're disabled or not, can be really difficult. As you say, and like, it's awful to hear that there is such a high rate of suicide, but I'm also not surprised, particularly for disabled athletes, who go through a really hard transition, because when you grow up as a disabled person, particularly as a child and in your adolescence. From my perspective, we sort of get pushed into sport and it's like, if you want to be accepted in society, be a parallel bit. Yeah.

00:19:50

Don: I love that you say that because I also agree. I think it's rubbish. I think the worst thing that we can do is assume that because you've got to ability, that now is your career path and if your bloody hates sport, you're really up against it. We've made athletes with disabilities very, very visible with Paralympics, but it's absolutely not the only, the be all or end all. And yeah, I'm not a fan of ramming sport down anyone's throat. It works for me because that's where my passion is. But I'm a big fan of ub where you need to be.

00:20:27

Peta: You're also part of leadership and advocacy as head of events at one community. Talk to me about one community. I know you do one hundred and twenty disability networking events annually. What is that all about, mate?

00:20:43

Don: That's super exciting. So one community creator the directors. Many years ago when the NDAs was coming in, there were a couple of support coordinators and their question was how do we find all the supports, like where are they? And so they instead of getting on Google Go and slugging away and seeing who had good seos, what they did is they said, well, why don't we bring everybody together? Why don't we do it in a way that is different to a b expo And nothing against big expos, but what they created was an absolutely time efficient, beautiful way to break the ice, to get information and then for people to be able to get on with their day. And so our events ready set connect events and networking events. But if you think speed dating but for service providers and participants, that's exactly what it is. So you've got the table hosts, our languages, table hosts. These are the service providers. They will purchase a table at our event. And then we've got the attendees. They will come along. They get a free ticket. So people looking for service might be you and eye. People with disabilities might be parents that have got a kid with a disability and trying to navigate this bloody ndis or where the services are might be support coordinators and they will come along. They'll have five minutes with each service provider. Then we ring a bell and they move on to the next one. So there's usually around twenty tables in a room and a really really good efficient way to get information and then, as I said, be able to then come back and connect with those providers when they need that servers. And we know the two biggest buzzwords in the disability sector with ndis his choice and control. Hear it every day. But the truth is connection is key. If you're not connected, you've got stuff all choice and stuff all control because you might have access to the cash and you might know what you want, but if you don't know where to get it, then you're really going to struggle. So what I love about what we do is we make the connection easy. We take the awkwardness out of networking and give people a chance to find out exactly what's available right where they live.

00:22:45

Peta: Can you tell me about and I'm going to say this wrong, I apologize, I'm so dyslexic. What Chris meant? Care index is?

00:22:54

Don: Oh the Kismeic care Index? Yeah, absolutely, no, all good mate. The Kismut Care Index is a three prong measuring tool so that we can have a look and go is the ndis failing, is it working? Where is it working best and where is that? Where are the gaps? And so what it does is it measures what wait time people have got between able to access services? How many times do they go to the same service all right? So in other words, are there lots of options for them or are they very very limited by that? And that's compared across the board. So we're going to have a look at averages all around the country. So we can go into different LGAs or different areas and go right now, you can put your postcode in there and say what's it like here for me to live with the disability. Oh, I've got a really really high rating. So that means I've got access to services. I'm not forced to use the same service, of course if I want to, i can, but I've got more real choice and control and connection with my funding through the ndis what's really happening here with the people that are living there. Have they got access? Are they using their funds right? Have they got time between services? They're made to wait? So that's the really cool thing. The cool thing about the Kismic Care indexes. Anybody anywhere in Australia can put their postcode in there and work out just how well, the NDIS is supporting them, and the services are supported in their local area.

00:24:28

Peta: And is where's the data taken from to know that disabled people are supported in particular areas. I know, like I have one random phone call at the end of every plan of my NDS and like they asked me how I'm going, and it takes me a while to convince them that no, actually they don't have to talk to my mom. I'm fully able to speak for myself. How do you gain that information to know that it actually reflects the true what life is like as a disabled Australian.

00:24:58

Don: The information is collect through bill payments, so it's a fact you can't get away from it. The cool thing about kidsmut is that whether we've got kids with disabilities, whether we're looking for ourselves, is we can go onto their marketplace. We can say I'm looking for a physio, I'm looking for an age care provide, I'm looking for someone to come and clean the house, kismut. Then go away and they'll go right, what are are you in, Thanks, Peter, you're in this area. Here, here's your post code. We'll come back and we'll offer. Basically, we are a conscieur's service, so we come back and give you that information. So here's three options of places you can choose from.

00:25:36

Peta: Well, it's been such a pleasure talking to you today, don I could talk to you all day, honestly. But my last question for every episode is all about perceptions that strangers have with disability. So when I go into a cafe or go to a petrol station fill up my car, nine times out of ten someone will come up to me and say, Hi, what happened to you? And it's like, okay, well technically nothing. I was bored like this, so I have sober palsy. But what is one question that you wish a stranger would never ask you?

00:26:13

Don: To be honest? On the opposite, I would prefer the questions than the looks and the curiosity. I would much prefer to take a moment and answer it. One of the funniest questions I've ever heard is do you have sex with your leg on or off? The short answer is depends if I'm standing up a lying down. But I'm a big, big believer that we are better off in our world if we can answer as many questions as possible. So one question I wish that didn't happen. If anything, I wish that parents wouldn't pull their keet away and say, don't look, don't stare. Okay, I'll get don't stare, But I would much prefer to have that conversation. My leg is designed to be an icebreaker. Mate. I want the conversation. So as long as what's the question comes from a respectful place, from a good place, I believe you can ask anything.

00:27:07

Peta: Thank you so much for listening to this episode of the I Can't Stand Podcast. If you enjoyed today's conversation, the best way you can support the show is by sharing it with a friend or posting about it on social media, and if you have a moment, leaving a rating and review helps more people find these stories. Don't forget. You can always send me an email I Can't Stand Podcast at gmail dot com, or you can follow me over on Instagram at Peterhook. I'll see you next week. I would like to respectfully acknowledge the wondery and bunner wrong people of the call and nation of which I record the podcast today, and I pay my respects to both elders past and present, along with and a special those in the first Nation's communities who are disabled themselves,