Clare Reilly on Wheelchair Meets Wilderness and her Accessible Outdoor Adventure

When Clare Reilly was diagnosed with multiple sclerosis in 2017, she thought her days of outdoor adventure might be behind her. But the lifelong outdoors lover, podcaster, and mum is preparing to take on something extraordinary; a 1,072-kilometre ride along Western Australia’s Munda Biddi Trail using her off-road wheelchair.

In this episode, Clare joins Peta to talk about the quiet courage it takes to attempt something you’re not sure you can do. She shares how Wheelchair Meets Wilderness began as an idea on a vision board, the logistics of tackling the world’s longest off-road cycling route, and the emotional side of living with MS; from daily grief and fatigue to moments of pride and possibility.

This conversation isn’t about proving what’s possible. It’s about trying anyway.

Connect with Clare Reilly

TikTok: @clarereilly

Instagram: @clare.reilly

Wheelchair Meets Wilderness: @wheelchairmeetswilderness

Learn more: wheelchairmeetswilderness.org/the-munda-biddi-trail

Connect with Peta Hooke

Instagram: @petahooke

Website: www.icantstandpodcast.com

Email: icantstandpodcast@gmail.com

---

Episode transcript:

00:00:02

Peta: Hello, and welcome to the I Can't Stand Podcast, the show that explores what it's like to live with their disability. My name's Peta Hooke, I have cerebral palsy and I'm your host. Each week I sit down with remarkable people whose 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 Clare Riley. Clare is a mum, a podcaster, and the founder of Wheelchair meets Wilderness. Clare was diagnosed with multiple sclerosis in twenty seventeen. She went from running an outdoor off grid education center to becoming a full time wheelchair user today. Now she's channeling her lifelong love of the outdoors into something extraordinary. Next year, Claire will attempt to become the first wheelchair user to complete Western Australia's one thousand, seventy two kilometer Manda Bindi Trail, raising one hundred thousand dollars for MS research along the way. In this episode, we talk about diagnosis, grief, resilience and courage. We unpack what it takes to dream big when your body is changed, and the logistics behind a challenge of this scale. It's sort of a quiet bravery that I really admire. And Clare, she's moving forward even though she's not entirely sure she can achieve what she's setting out to do. So, without any further ado, let's get into it.

00:02:05

Clare: My name's Clare. I was diagnosed with multiple sclerosis in April twenty seventeen. I'm a podcast host, a virtual assistant, a mom, a wife, and a chronic adventurer. I think I could say at this point, I think.

00:02:22

Peta: You certainly could. I'm so excited to talk to you about your upcoming adventure. For me, it's just such an amazing goal to have for yourself. The courage that you have to do things. I think when you have a disability, sometimes courage is enough just to get out the front door. So when you do something like what you're going to do, Claire, like I had so much respect for you.

00:02:47

Clare: Oh, thank you. I think respect is a much nicer way of talking about these things. I'm sure you've got that similar thing of I don't necessarily want to be an inspiration for walking out the door, but definitely respect, I think is a great way of talking about it.

00:03:04

Peta: Absolutely so, I want to start sort of at the beginning of your journey with disability. You got diagnosed in twenty seventeen. Talk to me about that and where you were in your life at that point.

00:03:19

Clare: So, yes, I was diagnosed with MS in April twenty seventeen. I had a two year old or maybe three year old to two three year old. We had just built, well, I had just owner built a house, so I was the project manager for the house. And I had a really sore lower back and no one could figure out why it was so sore. I went to a physio and osteo, a spiritual healer, who told me that it was bad juju essentially is why I had a saw back. And my dad, who's a nurse, and my mum, who's a teacher so very pragmatic, both said you need to go to the GP. I finally went to the GP, and he sent me straight to a neurologist. I was told I either had a benign brain tumor or multiple scrosses, and then I waited six weeks to find out which of those two it might be.

00:04:13

Peta: Oh what a fun six weeks.

00:04:16

Clare: Oh yeah, yeah.

00:04:17

Peta: So did you have any knowledge of disability before you were diagnosed, what was your background?

00:04:23

Clare: No, I was a very able bodied, very run of the meal white what thirty two when I was diagnosed my background to our door education. So I have a degree in outdoor ed. I had always just you know, fit in done the thing kind of been almost invisible in a completely different way. I really was at a turning point being having a degree in our do education only last a woman so long. Really, if you want to have kids and settle down, there's there's elements of working in the outdoors that you just can't do anymore. Go away for trips four weeks at a time. And I actually had a teaching degree also, so I knew I didn't want to be a teacher. I wasn't a teacher in my core, and so I was really at a turning point in life. So people often ask me how did that affect my life? But it really was my life affecting my life at that point, and so I find it quite difficult to differentiate between what being diagnosed with their mess change and having disability and what my life was changing. Anyway, during that six weeks time, we applied for what was my dream job As a child, I dreamt of running this outdoor education center. And so during that six weeks time, my husband and I had applied for that job and we were given it just before I was diagnosed, So we were successful in that. And so again I find it quite hard people like, but your life changed so much when you were diagnosed, and I was, like, my life changed so much when we went and ran an off the grid outdoor education centered with a two year old for two and a half years.

00:06:11

Peta: And how did your I mean, I'm really conscious when I talk about loved ones and their response to disability, but I'm interested to hear because it sounds like a really hectic time for you, but obviously also for your partner and your child. How did they go about adapting to the change and supporting you? And do you have any advice for people who are listening who are supporting people through disability or diagnosis today?

00:06:41

Clare: So my son probably doesn't know anything any much different. He was two when I was diagnosed. He's eleven now, and he's such a gem, like I cannot speak highly enough of him. And I think at that point there wasn't much change. I was still very able bodied and very able to hide my diagnosis. I didn't tell a lot of people for multiple years after I was diagnosed, and so because of that and given the fatigue levels of where we're working, there wasn't a lot of adaption that had to happen at the time. It's more come since then, and now I'm a wheelchair user pretty much all the time, and so that, yeah, the adaption from my partner, my husband, and has happened more recently than that initial diagnosis.

00:07:39

Peta: Do you think having time is a bit of a blessing in that way that it gives both of you and also your son time to sort of adapt. It's not like I think about people who have catastrophic accidents where their life changes overnight, and how difficult that would be because your whole identity. You just can't keep up that quickly to sort of understand who you are and how that changes your whole life. Whereas what I'm hearing from you and please correct me if I'm wrong, but it gave you time to sort of be like, Okay, what is my life going to look like with MS going forward.

00:08:20

Clare: That's such a good question because I often wonder about an MS diagnosis because that often happens, particularly for women between twenty and forty, so three quarters of the people diagnosed with MS are women between twenty and forty, and I often think about how that differs to someone who was born with a disability, and then, like you said, who get that happens quickly And I can't speak for anyone who's in even other people with MS, because every diagnosis of MS happens and looks so different. I think it was a really good opportunity for us all to ignore it for the first couple of years. Definitely a lot of head in the sand, kind of just get stuck into what we're doing. I don't know whether it's been something we've accepted along the way, or whether my husband's accepted it along the way, or it's just that same kind of get stuck in and do what we have to do. I don't know if it gave it to the benefit at the start. I definitely think we just ignored it for a couple of years.

00:09:36

Peta: I want to before we get into the really nitty gritty stuff. You've spoken about the fact that you're also a podcaster, tell us about your podcast class.

00:09:45

Clare: Yeah, so I host the MS Understood podcast, So I interview people with multiplecrosses or people who can help or support those of us with MS from all over the world. Initially it was a COVID and I released an episode a week for probably a year and a half, and I realized how much work podcasting is, and so I decided to just do kind of more short releases. So, yeah, in the middle of releasing season three at the moment, and it's been so nice. It actually had been nearly three years since I released an episode, but you know, life happens, and it's been really nice to reconnect with the audience and also be able to have these kind of conversations again.

00:10:36

Peta: You spoke recently on your podcast about grieving the loss of who you were. Now in the first ten minutes of this conversation, you know, you're very upbeat, and I'm exactly the same way with my disability, but I can't lie. Somedays there is grief because, particularly for me who was born with my disability, I always think about the person that I might have been, and that's a really I think can be a dangerous sort of viewpoint for me because I can't change who I am, and I am very proud of who I am and this is just life. But for you, you've had some time to sort of get to terms with the fact that this is your new future and things will change going forward. So how do you grapple and manage your grief with your disability.

00:11:28

Clare: I think part of it, too, is the life that I thought that I would have going forward, you know, growing up doing out durreed, doing thirty day hikes, you know, all of these kind of adventurous My husband and I met rock climbing, So there's a lot of things that were part of my life and part of our life when we met that aren't necessarily the way or can't necessarily be included in the way that they were. Grief happens every day. You know. I might have a little bit more resilient some days when I'm not super fatigued, or I haven't done too many hours of work, or I haven't look who knows, I haven't slept funny. But yeah, I think there's definitely particular things that set off my grief more than others. So if I have a fall, which I try and avoid, but you just can't. Can't stop these things, and the frustration of not being able to get off the floor on my own when I used to climb three hundred meters of rock climbing cliffs. You know, it's quite a contrast. There's an importance of letting yourself grieve the life that you don't have that you expected to have, but also moving through that grief, because otherwise you could just sit in it all the time.

00:13:04

Peta: I'm not surprised that you're a really resilient person when I'm looking at what you're looking to do, Claire, resilience, my goodness, that is k or at least that would be the word that I would need. I know that you love the outdoors and it's probably where you feel most like yourself in a way, so I can understand why you want to do what you're going to do. But please tell me about wheelchair meets wilderness.

00:13:33

Clare: I will, But also I need to come back to a very I think important point no of this wheelchair meets wilderness, because I said to my husband yesterday, what if I can't do it? And I think that that's a really important point that I don't talk about enough, is that I'm not doing this with one hundred percent confidence. I'm doing this with false bravado a lot of the time. But yes, wheelchair meets wilderness is an idea. So, like I've said many times, I have a background and outdo education. I used to do big hikes. We ran it outdoor Education center for two and a half years after I was diagnosed at the start of twenty twenty four, I'd made a vision board. I had it as my background, made it in canvas, I had it as my background of my laptop screen. Was sitting here one day feeling sorry for myself because friends of mine or people I went to UNI with, were riding on horseback from Hellesville to the northern tip of Australia, so right up the east coast. I have like six horses. They were doing this big, epic adventure, and I was feeling sorry for myself because I can't possibly do something like that anymore. I'm a wheelchair user. Now, how am I ever going to have big adventures? And I looked at my vision board and in the bottom right corner was a picture of the Mundabety Trail, which is the trail that we're looking to do we will be doing next year, next to an off road bike. I was studying because I'm also doing a Bachelor of Psychological Science, and so I was sitting here early in the morning studying and I went out and started, you know, had a hot chocolate with my husband and was eating breakfast and I turned him and said we should we should ride the Mundabitty Trail. And he goes okay, And I said, and when we do it, we're going to raise one hundred thousand dollars for MS research. And he goes okay. And so from there, I very quickly put it on the internet, because once you put something like this on the internet, you it's really hard to turn back. I kicked off with a crowdfunding campaign to try and cover the cost of an off road wheelchair than not a wheelchair, to cover the cost of getting over there. I had incredible support from the Port Arlington local community, which is where I live. We've had some amazing fundraising events in town. I've been able to speak at a variety of different community functions, which never gets easier. April twenty twenty six, we will be driving over to Western Australia. We will be riding for approximately twenty six days. The Monday Bitty Trail is one and seventy one kilometers. It's the longest off road cycling route in the world, which I didn't know, so yes, my husband and I are going to be riding the whole trail. We've got a few people who have volunteered to come along in the trail with us because sometimes there's fallen trees over the track, so my I will need to get over the trees, my bike will need to get over the trees. And then over the next few years, my goal is to raise one hundred thousand dollars to go towards MS re search.

00:17:02

Peta: Why did you pick that particular trail, because when I was looking, I'm like, you know, because I thought you were in Victoria, and I'm like, oh, I don't talk to me about why Western Australia and why that trail is it held in high esteem in outdoor recreation.

00:17:21

Clare: I needed something that was wheels friendly, so I couldn't do a hike because hikes can have stairs or rocks or those sorts of things. Whereas my thoughts were, and this will get proven next year, is if something is made for bikes, it should be fairly wheelchair friendly. And that was that was kind of it.

00:17:46

Peta: Talk to me about more of the logistics. So are you camping at night? How are you going to manage fatigue?

00:17:55

Clare: Probably my disabilities progressed in a way that I find it hard to get on and off the ground. Like you said, the fatigue of doing the whole ride each day, as well as having to get myself on and off the ground wouldn't make for a great trip, as well as us needing someone to look after our start for the trip. So what the plans are is that each day we will ride a section and my parents will pick us up from the end of that day, drive us to the accommodation where we're staying, which is all pretty close to each point, and then the next morning they'll drive us back to that same point. We'll ride again for the day, between forty and sixty kilometers each day, which it's a bit of outrageous, and then they'll pick us up again. So we've had some incredible people along the Southwest Coast or southwestern region of Western Australia donate time in their accessible accommodations, which has just been so amazing and I'm so grateful for that and I can't wait to share with people these beautiful accessible accommodations down along that area. And we've had spinlegive discounts on maybe lesser accessible accommodations because it's not designed that area. That trail is not necessarily designed for someone in a wheelchair. But I think even things like that means that the people in the area are going to start thinking more about how they can make something like this more accessible. My husband, we got him an electric bike, so and I said to him, he could ride the whole trail easily, no worries, but sadly for him, because I'm the one with their mess and I'm the wheelchair user. I said to him, it's not actually about you doing the trail. It's about me doing the trail, and you're there to support me doing it, and you need to ride an e bike, so at the end of the day you can still help me shower or cook dinner or you know, probably at the end of each day, I'm going to be editing footage, making reels, putting in it, riding, I'm writing a book, so there's going to be other things that I'm going to have to do at the end of each day, and I need him to be able to support me to do that. So, yes, there's going to be lots of logistics.

00:20:31

Peta: Can you explain to me a bit more about your bike or wheelchair or not a wheelchair. I think you said it was called.

00:20:37

Clare: Yeah, so the brand is not a wheelchair and it was made or they're made in America by a YouTuber whose YouTube channel is Jerry Riggs Everything, and his name is Zach So I'm not sure why you know, but his wife is a quadriplegic, and so he made an off road bike with two mountain bikes attached together. And what I have now is that like the newest iteration of that. So, because my husband Jay is a mountain bike rider and knows how to fix bikes up, we thought that taking something made out of bike parts would be safe. Something happened along the trail, he would be able to fix it. It's powered, like I said, with a thumb throttle. Thankfully it's on the left side because my right side is my weaker side. And on Saturday just gone, I did a twenty two kilometer ride in a couple of hours. So I'm trying to get out every couple of weeks and do a fairly long long ride on it. But yeah, it's great. People stop me quite often to ask about it.

00:21:52

Peta: So how do you manage the battery? Like if there's any issues. I know you said your partner's quite handy with a which I'm sure will be amazing and vital. But what happens if there's any technical issues as far as batteries or anything else like that.

00:22:11

Clare: So we do have to We bought a second battery, so we are. The plan is to use one each day, charge the other one so that we've always kind of got a back up. We're hoping that does a trick.

00:22:27

Peta: One of those things, even with travel, you always think you've thought of everything and then something will happen. But I'm sure you'll be more than okay. As far as raising money. You talk to me about why you wanted to attach the charity element to this goal of yours. Cleare.

00:22:46

Clare: Firstly, it was really selfish, honestly because I knew that this kind of trip was out of our budget, so I knew that by linking it to a fundraising event, people would be willing to help us out to get us over there. So that was the initial probably not the initial initial. Like while why I blurted it out. I think that MS is still a really underrepresented, misunderstood disease and disability, and I thought I don't necessarily want the money to go to helping people and daily, but more about where does this disease come from? Why does it start? And I know that there's been some really good progress on understanding MS and how it comes about in the last few years. So I'm just foping that I can can help out and contribute to that in some way.

00:23:49

Peta: And how is the fundraising going at the moment? Where are you at with your goal?

00:23:54

Clare: Yeah, so we've raised about eighteen thousand dollars, which is amazing the moment. What we're doing, Everything that we're raising at the moment is going towards covering the cost of the trip, and everything that gets donated that we need means that we have more money to go towards the fundraising goal in the end. So like I said, we've had accommodation donated, We've got the wheelchair discounted, but we are looking still for a few things camera gear so that we can try and film a documentary and get that awareness out there. And then once the trip is complete, anything that's left over from now will go towards the start of that one hundred thousand dollars goal. And like I said, I'm writing a book, so all pro seeds or profits from the sales of the book will go towards that fundraising goal. And then we're going to try and, like I said, use the documentary to get more awareness and hopefully more funds coming in through a crowdfunding campaign. Yeah.

00:24:56

Peta: Whenever I watch Peak one on social media, and it's the content I seem to get drawn to is people who do these amazing challenges, that decide to go across a country or bike ride through Europe or whatever it may be. Like Ned Brockman when he ran from I think it was Perth to Sydney, like that was just such an amazing spectacle to watch him alone apart from his support team behind him, but alone on the road every day and then achieve this big success and push their body to the absolute limit. But then I think about what they do afterwards and how they manage the calmdown of like this was their whole identity for two years and it's amazing they've achieved it. But then what happens Have you thought about yourself after this?

00:25:51

Clare: Yes, a little bit, so, Yeah, it's definitely my whole personality at the moment, and I keep telling my friends, please talk to me about something else. Because I can't talk to you about anything else, and it will only get worse. I imagine as we get closer to the trip. We are planning to spend two months in Western Australia after.

00:26:12

Peta: The ride.

00:26:14

Clare: And then writing the book obviously, but I think not only you know we're fundraising now, but the fundraising goal won't stop, so it'll still be doing a talk here. They're you know, selling books, those sorts of things, so I'm sure I haven't thought that much about that process, but it will keep going until I've reached the fundraising goal.

00:26:42

Peta: The reason I started the I Can't Stand podcast all those years ago was the fact that I was so sick of strangers coming up to me in a cafe and asking me what happened to me. I think we all have those questions when you have a disability, particularly obvious one, that you just think, how can you ask a stranger that? Are there any questions that you hate? Particularly about being asked by a stranger.

00:27:11

Clare: What I really dislike is when people tell me that I need a reversing mirror or reversing beeping or a reversing camera when I'm trying to turn around and they're in my way. A lot of people have no awareness self awareness of where they are in the world, whereas I and I'm probably I'm sure you probably feel the same, have so much awareness of how much space you're taking up and how much space it takes to turn in a circle. And though the people who are in your way, all they need to do is take half a step or a step to the side so that you can turn around, But it becomes our fault because we're taking up too much space. So yeah, it really is the reversing comments that get me every time.

00:28:06

Peta: Thank you so much for listening to this episode of the I Can't Stand Podcast. If you enjoy 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 especially to those in the First Nations communities who are disabled themselves