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Living With SMA
Living With SMA
EP39: Festivals and Gigs
Get ready to roll into the beat of festival vibes with our latest podcast episode, where we explore the world of festivals and gigs through the eyes of wheelchair users Jordanne, Mollie, and Ross, all living with SMA! 🎶✨
Join us as we navigate the highs and lows of festival accessibility, from the thrill of inclusive experiences to the challenges faced by wheelchair users. Jordanne, Molly, and Ross will share their firsthand accounts of navigating festival grounds, accessing venues, and interacting with fellow event organisers.
While the journey may have its bumps along the way, our guests will also shine a spotlight on the positive moments that have lit up their event experiences. From unique and special experiences to the triumph of overcoming accessibility barriers, these stories remind us that every obstacle is an opportunity for growth and empowerment.
So grab your gear, tune into the rhythm of inclusivity, and join us for an insightful exploration of festivals and gigs from a wheelchair user's perspective. This episode promises to be a celebration of resilience, community, and the power of music to unite us all! 💃🕺🎉
#LivingWithSMA #AccessibleEvents #WheelchairAdventures #InclusiveMusic
Hi everyone, and a big welcome to the Living With SMA podcast. We talk about all things spinal muscular atrophy related, but topics discussed are not exclusively for individuals with SMA, so there should be something here for everyone. We also do things differently. For starters, our charity SMA UK uses different hosts and everyone involved gets a final say in the creative process of making these episodes. We cut through the jargon and the content is accessible for everyone. All the stories are individual and we are committed to sharing as many different perspectives as we can for our listeners. So if you're listening to this and have a burning desire to talk about a particular subject, then please reach out to us on our social media channels or send us a quick email. And remember, no topic is off the table. If there is something the SMA community wants to talk about, this is the place. We really hope you enjoy the podcast and please do connect with our charity and share your comments online and let us know what you think. From all the team at SMA UK, thank you for listening. Hello everyone and welcome back to a brand new episode of the Living With SMA podcast. My name is Ross Lannon and I am your host for today. And before I introduce today's guests, I don't really know how to introduce them other than saying that they are quite possibly absolutely bonkers for what we are going to talk about today. Now, today's guests are two faces who are very well known within the SMA community, and they are aiming to raise a whopping 100,000 pounds for SMA UK by taking on a climb with a difference. It is an absolute challenge and yeah, they are joining us here today to talk all about the mission and how we can get involved and support them as well. So yeah, welcome Josh and Maxwell. Hello, guys. Hello, Lannon. Hello. Now, you guys are both very familiar faces to the SMA community and to this podcast in itself. So we don't need to do the general introductions of who you are and where you're from. But what I do want to know is how you guys know each other. So for those that don't know the purpose of this podcast, you guys are taking on a mission where you're basically racing each other to the top of Mount Snowdon in Wales on the 15th of June. Absolute madness, both wheelchair users, which is brilliant. Tell me, how do you know each other, Maxwell, and how did this all come about? Yeah, so I met Josh at the Resonate Weekend last year, and Josh brought along his off road wheelchair and I have to say I thought he was really, really cool. He was like one of the coolest people I'd ever met. And then he brings out this off road wheelchair and I'm like, wow, this is just incredible. And then he said I can have a go in it. So I think we both remember my face when I got in that wheelchair and how happy I was just to kind of be free and roaming around in this X8 all terrain wheelchair. And yeah, that's how we really met each other. Yeah. By the way, Maxwell's flirting way too much for my liking, making me feel a little bit uncomfortable here. No, no, I'm winding you up. Thank you. Basically, I remember Maxwell, I knew you before we met at the Resonate Weekend, because I think you're in one of the SMA group chats that I think me and Martin simply created or took over running. And I think you're in there, the SMA Young Insight group, or I don't know what it was. And I remember seeing you pop up in there and it wasn't until the Resonate Weekend that I saw you and I was like, oh, here we go. And to be honest, the face that I remember, there was two things I remember from that day. The first one was Maxwell's reaction when he got in the chair and realised that he could go over a tiny little curb, which I probably had the same facial reaction as Max, but actually the little... That is like a core memory in my head now at that moment. But what Maxwell's probably figured is that tiny little bump now that he went over is so insignificant to the type of bumps that he's now going to be able to face in the X8. And it's kind of like, when I try and explain to people what it's like to be in this chair, it's if you're in your day to day chair going around the high street and you look at a curb, you have to then go and find the lowest curb or the one that's flattest to the road for you to get down. Or if you want to go across grass, you try and navigate where you think the firmest part of the grass is so you don't get stuck. Whereas with this chair, you don't think, you just go where you want to go and that's it. Yeah. So I think it's safe to say from that, Maxwell started off as a fan of Josh and now he's chasing him up a mountain. So it doesn't get much better than that, to be fair. That's a fairytale, man. We could make a film on that. It is. We should, we should. We should. After this, we should do it. Sell it and then donate the money into our cause. Well, there we go. Let's talk money then because that's what this is all about. You have set yourself a mighty mission, 100,000 pounds, which is an incredible amount of money, but obviously needed for your the aim of what you want the outcome of this to be. So let's talk where we are now. I've had a look at the JustGiving page. We're already at 30% target. You guys have already raised a massive 30,000 pounds, which is incredible. Let's start this money chat off by giving a few thank yous 'cause I know there's a few people that have really sort of helped you get to this stage already. Obviously, there's a long way to go still, but this is a massive place to start. So who's been involved so far? Josh, I know, one donator in particular, the Sir Stelios Foundation, they made an incredible donation, didn't they? Yeah. Just, yeah, a big thanks to the Stelios Philanthropic Foundation. For those people who don't know what the foundation is, it was a foundation created by the founder of easyJet, Sir Stelios Haji Ioannou. As part of his commitment, or he signed up to the Giving Pledge, which is something that Bill Gates created various years back with Melinda, is it Melinda? I think his wife is. And the idea is that these individuals that have made millions, billions, whatever, sign up to the Giving Pledge and give half of their wealth back, I think when they pass away or something, but as part of Sir Stelios's philanthropic activities, he does do a lot around kind of disabled entrepreneurship. And that was kind of my route into the foundation. And then I posted something on, I think it was LinkedIn, back in, well, about a couple of days after Maxwell and I launched the campaign, and someone from the foundation picked it up and put it to Stelios and Stelios goes, yeah, we'll donate 25,000 pounds. That was huge. And I remember the moment, I literally was just about hopping onto a PR corps and I nearly fell outta my chair, because I just didn't know how to react because it was like holy crap, there's 25,000 pounds here. Look, that's a lot of money. It meant that me and Maxwell could straight away have enough funds to be able to purchase one wheelchair. And then we've also had various other donations come in. We've had a couple that we presume, has SMA who donated 2000 pounds. And we've had lots of other donations of like 100, 200 and even 300 or 400 pound donations. So people have been exceptionally generous. And it doesn't matter how large the donation is, me and Maxwell are grateful for any donation that helps us get towards the target. Because the output of what we're trying to achieve here is to purchase as many X8 wheelchairs as we possibly can. But at the same time, what we'd like to do is help fund two activity weekends. These Resonate Weekends that SMA are putting on for children and adults or young children. Yeah. Young children and adults, I suppose. We'd really like to be able to fund two of those as well. But effectively if we don't meet the 100K, then we will just ensure that the money gets allocated to at least do one weekend then purchase a chair or two chairs, or no, whatever. There's ways of us moving it around. But that's kind of our goal is two wheelchairs, two Resonate Weekends, and any more money that we raise over 100 grand we'll then come across that bridge when we get to it. Incredible. Yeah. And you guys are well on your way already. We've already said that this challenge is taking place on the 15th of June, so we've still got a few months to go. There is definitely still time. Maxwell, you guys have also sort of filmed a bit of a promotional video as well. I know you've had some help doing that and trying to get the word out there 'cause social media is a great platform to be heard, isn't it? Yeah, no, totally. We've got an Instagram account, Know No Bounds challenge. I've been putting videos on that and kind of me and Josh are kind of putting updates on there as we go along, but the kind of reception of the videos that I've been putting on there has been amazing so far. One of the videos is at like over 500,000 now, which is absolutely amazing. And we've got the promotional video we've put out and Josh's PR team is just amazing at getting it out to the press as well. We've got some really exciting opportunities coming up. I'm not sure are we allowed to say about that, Josh? No, but yeah. We've got some really exciting press coming up so I'm sure it'll ramp up the closer we get to the 15th of June. Yeah. Just teasing us there with little nuggets of excitement, but yeah, no, it, yeah, it sounds great. So set the scene for us of, obviously Josh, you had experience with one of these all terrain chairs in the past, and then obviously you have got Maxwell on board, but there is a real root meaning behind this campaign, isn't it? In regards to raising awareness of outdoor accessibility. Can you tell us a bit about that? Yeah, when I purchased the X8, I purchased it after a period in my life of reflection of where I wanted to get outdoors more. And I've never been overly interested in getting outdoors. But I thought, why not? Let's go out and see what the outdoors has to offer. So I'd purchased the X8 knowing that this Permobil chair just isn't gonna be good enough. And the guy came out and done a demo at my nan's house and Maxwell's been to my nan's house, so he knows what it's like there. And up until the point of this demo being done, I hadn't been up in that woods since the age of about five or six when I could just about walk up or go up on my nan's shoulders. And when I went up there, it was kind of this realisation moment of, holy crap, this chair is quite incredible. After 25 years of not being able to access something that's in your back garden, and now you can, it's kind of a massive realisation moment. And that's when I thought, oh, why don't we go and do a trek up Pen y Fan in the Brecon Beacons in South Wales. And we went... I went with Matt one weekend and we drove two and a half hours there to get there to find out there was a padlocked gate and the kissing gate wasn't big enough to get the wheelchair through and there was a phone number that we needed to ring to get somebody to come and open the gate and nobody answered. So we then turned around and drove another two and a half hours all the way back home and it was kind of really demoralising to think you've spent all this money on this chair that has no problems doing the walk that you want to go on other than what's preventing you is a padlocked gate or a kissing gate that just isn't big enough to get your chair through. And it's one of these things where, you then go... Sorry, it starts making you think about other barriers and up at my nan's house, literally I'd say about a quarter of a mile up the lane, less than that. And you get, you come up to a style straight away and it's a public footpath that will take you through the hills of the Mendips and you can't get through because obviously it's a style you have to kind of step and hop over it. And what it's made me realise is that we need to start changing the designs and installations of barriers that we put up to protect the countryside, but design them in the way that's more accessible and more inclusive. But there are lots of conversations and issues that people raise about, well, should wheelchairs be going up and down these nature paths because they might damage the tracks in the rural areas and it needs to be preserved and all this sort of stuff. So there's lots and then you've got wildlife and kind of trying to keep livestock within fields and is there a risk that animals are gonna get out if we have these bigger gates? And there's lots of these other things that people start getting frustrated by if we start changing it because there's a handful of us that want to go out in a wheelchair. So, but anyway, that's kind of what sparked it off, Ross, really is that realisation of, oh crap, you've got this wheelchair that makes the outdoors that is inaccessible accessible, but then you've got man made barriers that makes it inaccessible anyway. Yeah. And it goes back to the, there's that common phrase, isn't there where it's actually, yes, we might have disabilities ourselves, but more often than not it's society itself that is disabling us even more for these barriers that could quite easily coming down to the design and that be avoided. So yeah, I think it's a great challenge that you're taking on. And I just love the fact like if this doesn't sum up both your personalities, I've followed you both online for a while. You don't just do anything lightly. The fact that yes, okay, you've noticed accessibility needs to be improved and awareness of outdoors. You decide, well let's climb a mountain, let's race each other. You go to the extreme. Can I just add to what Josh said as well? Yeah, please do. Just because I took geology GCSE and I wanted to become a geologist for so long, but I didn't have an off road wheelchair to do so. I guess a bit like Josh was saying, like a Permobil can't do all of those amazing things outdoors. And just like people have different shoes like running shoes, boots, disabled people need the same thing, they need a different wheelchair depending on the activity. And I couldn't really join in with my friends exploring outdoors. And I missed out on so much of like the kind of practical things. So I had to learn my whole course just in theory because I couldn't join in with it. So I guess as well as it kind of being this experience and helping with mental health, getting out and about, it's also like this educational side to it. There's so many people missing out if they wanted to take geology or some sort of natural science, they can't actually do that. So for me it's all about giving somebody else the opportunity to go and smash that if they wanted to. Yeah. And that's such a really interesting point actually. I hadn't thought of it in the sense of you describing able bodied people changing their shoes and things. That's a really, a really good point. We kind of we're sat in what we've got and we're expected that that is to cater to all environments, whereas it really doesn't, does it? So, yeah, no, thank you for raising that. I wanna talk a bit about the challenge aspect of it itself. 'Cause we love a bit of drama. We love a competition. This is how we're getting people involved. You guys are turning it into a race. So tell me a little bit about that and how it's gonna work. So are you both starting off at the same point? I understand you're both gonna have a team of people supporting you as well. So Josh, tell me a little bit about that aspect of the race. Well, first I'm gonna let Max go first 'cause I need to see which is gonna be the slowest route. So let Matt. We're doing the same route. I was gonna say. Yeah, but I need to see where you get... I'm gonna stab your tire though. I'm gonna stab your tire and see what that does. Oh, only in talk. It's funny actually 'cause Maxwell said to me, I'm gonna need my binoculars. So I've just upgraded my iPhone and now well I've like times five zoom. So hopefully, I should go to the modern look without a pair but not ramping. What iPhone is that? 'Cause I'm pretty sure the new 15 has 15 times zoom, so you might need to buy a new phone. I can't tell what I... I only anyway, eight times 15 mate, times, five's plenty. But that I think the plan will be because we have quite a chunky team each, it's not gonna be necessarily possible for like me and Max just to go off at the same time. So I think what we'll probably do is have like a 30 minute delay. So one of us will go off and then the other one will start and then what we'll do is we'll probably have somebody doing the timekeeping on each team. And then what we'll do is when if when Max gets to the top and when I get to the top, as soon as we get to the top, we'll pause the stopwatch for the time that we're up there and then when we start off again, we'll then hit start and the time will start ticking again back down to the finish line. So that's the way I think it's gonna work. And then hopefully when we get to the top we can all have a massive photo, which should be pretty epic. But I know the actual bit at the top where everyone has like their photo. I don't know what the kind of the statue or the little, they've got at the top of all of these hills, they've got like these things that you go up and touch and this, a monument. Thank you. It's a really small one, but you go up and you touch it. And in order to get up that you've gotta gut quite a lot of like stairs and it's like on, it's, I don't really know how to explain it. So I don't think it's gonna be practical on the day really for me and Maxwell to be carried up there. But I think what we'll do is we'll get as damn close as we possibly can and then hopefully have fun in the background. Yeah. And I love the competitiveness that is gonna be coming out from this. On average, what are we predicting? How long does a mission like this take usually? Well, it's a really, it's a tough question 'cause Max, how long is the part do, can you remember how long the actual path is? I think is it like six kilometers? It's quite long, but I guess for us, obviously going up and down, we don't know how long it's gonna take compared to an able body person. Because we might get stuck. We might need pulling along with the ropes. So I guess it's very like, hit or miss. But I would say it'd probably take an extra like hour on top of like, the normal time maybe because obviously we've got like a 14 kilogram medical bag, 46 kilograms of batteries, and like loads of other things as well. We've kind of been curating our teams to carry that much weight up there. So that's why we need like above 15 people. Yeah, this is what I wanted to ask, Maxwell. Like, when it comes to curating your team, how does that work? Like how do you pick between who your, who are your friends and who you're taking with you? It's hard. It's been. I felt evil at times like saying, no, you can't join but you can. I've got some people in the Royal Marines, got some ex rugby players. So hopefully we, with that brute force we can really try and get up there quickly. I've also got a medic on my team as well, and then just some close family and friends because obviously we've got that intimate care part of it as well if we need to go to the toilet and things like that. So that's something we really have to consider when going up the mountain as well. Have to have people that are close to us. Yeah, definitely. And Josh, I hate to say it Josh, but there's a bit of an age... Don't you dare, Ross. Don't do it to me, Ross. There's a bit, there's a bit of an age difference between you and Maxwell, and obviously we all know being outside for long periods of time, it can be very cold and tiring and stuff. So Josh, as the older gentleman of the group, how are you feeling about that? Ross, I can't believe you just called me old. Hey, there's no favoritism here. We are non biased. Sorry, what was the question? You've taken me back. I'm stoked that you think I'm old, Ross. Well, I'm just saying, when you're doing an outdoor challenge like this, where obviously I'm factoring in the age, the weather, the coldness. Are you up for the challenge of Maxwell being bit younger? I'm gonna be close up his ass. He's gonna need to be careful. I think age, I do know, I don't know, it'd be interesting. I think my hands and my neck, is, I think, and this Maxwell's obviously gonna have the same public problems as myself, but I think for me, that's what I'm more concerned about is how do we manage? I think going up is not gonna be the issue. I think it's actually coming down that's gonna be the problem. Because what I have noticed, just from doing a couple of trips and Max, when Maxwell, when you get your X8, which hopefully is not too far away, you'll notice that when you're coming downhill with all the bumps and the jolting in the head, your neck muscles really start to fatigue. So your head starts to drop and when your head drops... Yeah. And when you're going downhill with your head down, it's really hard not to like, to see where you are going. So what you have to do is recline the chair back on different gradients. So it's gonna be hard. I've just had a quick double check, actually whilst you guys were talking, which is why I was, which I was why I forgot the question. But the actual length of the path itself there and back, so from start to finish is 14 and a half kilometers. Which on average takes people seven hours to complete. Now, I reckon it's probably gonna take me and Maxwell nearer the 10 to 11 hour mark to complete with breaks and everything else. So it's gonna be a long day, early start, late finish and we best hope the weather is on our side. Yeah, I can say it's set those alarm clocks early that day guys. For sure. Early start. And when it comes to most people, sort of able bodied people taking on a challenge like this, for example, if they were climbing a mountain or running a marathon, there's a lot of training involved, preparation, getting yourself used to different climates and things like that. Is that something that you're both doing? Maxwell, have you started going out on little missions already? I haven't yet 'cause I haven't received my off road wheelchair yet, but I've been thinking over the tactics quite a lot. And I don't wanna spew too much, but I'm definitely gonna have some runners in my team going forwards and doing certain things, so. Yeah. Oh. You crafty. So, yeah. This is the thing when it comes down to selecting your team as well, like obviously you want the people who are physically fit and strong to be able to help you, but also you need the funny ones for moral support as well to keep you going mentally, I imagine. Yeah, definitely. Hopefully my dad doesn't injure himself on the way back down again. Oh God no. That's the last thing you want. But it is a risky business though, isn't it? Tell me, Josh, about some of the potential risks. I hate to be a party pooper here and the health and safety police and all that, but this is not an easy task, is it? No. We've got, me and Maxwell will have a fully qualified or trained paramedic with all of the kit on each of us on each of our teams. We're going to be well supported. We're also going to be letting, what are they called? The mountain and rescue team of Snowdonia Park to let them know that we're going to be climbing it as well. They may even actually come up with us on the day. Just given what we're doing and the volume of people that are going to be coming with us, they may or may not feel it's appropriate to send a team out. So, yeah, we're doing what we can. I mean, me and Maxwell will have enough people around us on the tricky bits of the path to make sure that we're not going to go flying out of our wheelchairs or anything like that. Probably we're going to have our harnesses and our seatbelts strapped around us and leg straps. So it's very unlikely that we're going to go anywhere. And like I said, if we do, we're going to have the right people that are going to know the whereabouts and the right resources around us, that if anything goes wrong, we should be absolutely fine. My cousin was in the Royal Marines and he said just like Josh, on the way down, it's going to be a lot harder. I guess, as you're climbing up, maybe not for me but for them, obviously, the weights going forwards into your steps, but on the way down, one slip and you could just twist an ankle. So I definitely think on the way down, we're going to have to try and be as careful as possible even though it's a race, to just take it at our own pace and not to get ahead of ourselves. Yeah. Definitely. I reckon that's a bit of scared mongering tactics on me to make sure that I go slower. I'm just going to see Max just absolutely bombing it down and people like... The mind games need to start now. People are going to be waving, saying, Max, come back, you're going too fast, you idiot. You see Max overtaking the train on the way down. Can't wait for the... Yeah, just put it in free wheel and push me down. I just like the casual dropping off, my cousin in the Navy, he's doing those tactics already, just to build up. What I might do is if I'm really far behind and I let Maxwell go, I might just hop on the train and then hop off near the bottom and just sneak in at the end. There you go. Maybe we need to have video evidence. This is one of the things that we need to put in place. Well, I was going to say, I was going to ask, are you going to be documenting the journey? 'Cause Maxwell, I know you love your video making and that as well, so I presume there's going to be a lot of documentation en route. Yeah, definitely. I'm going to bring like, I think everybody in my team is going to be recording, to be fair. Well, if their hands aren't full. And then we've got, obviously Josh as well filming the whole thing with these professional camera and drone, I believe. So, yeah. We've got so many different angles. And on a more positive note, Josh, how are you planning on celebrating after? That's what we want to know. Well, do you know what? I was actually looking at, there was an accessible lodge with a jacuzzi and everything in. But it's about an hour. It's about an hour away, right? It's about a 15 minute drive, but you can only have it five days. And what I was wondering is if we could get someone to maybe pay the 1000 pounds and then the winning team gets access to it for five days. That is so cool. Yeah, that would just peak the interest to want to win even more, to have access to this place for five days afterwards. I mean, that would be pretty fun. That's just added a whole new element to the challenge, isn't it? Talk about motivating the team. I know. Yeah. Right. So, guys, most importantly, just to kind of sum everything up now, how can people get involved and support you? Give us a plug, obviously, we know you've got the JustGiving page out there. Maxwell, what's the best way that people can support this challenge? So they can text SMA10 to 70470 or they can go to the Know No Bounds challenge with an underscore at the end and interact with our content, which would just be amazing to push it out to other people and get it in the algorithm. Yeah. Yeah. So you guys have got the hashtag going, the #KnowNoBounds challenge. And again, we've talked a little bit about money already, but obviously, for those who are not able to support financially, just supporting digitally through sharing your posts, it may reach somebody who is able to donate financially. And every little thing helps, doesn't it? Yeah, totally, every single donation. So, yeah, just sharing it would be absolutely amazing. And it's that kind of domino effect on Instagram and everything else. And obviously also our personal Instagrams, Josh posts a lot on LinkedIn about it. I do a lot on Instagram about it. So, yeah. Perfect. And again, just to kind of summarize, you are already at the 30% of your target, which is incredible. This is taking place in June. So, yeah, Josh, give us a final reminder. You're aiming for the 100K, but obviously you'll take, obviously, whatever you can get, and just one chair alone is 25,000 pounds, isn't it? Yeah, yeah, I just really echo what you guys have really just said. It takes a couple of seconds, please share it with everyone. Talk about it, have fun with it, get involved with mine and Max's journey. There's going to be more content certainly coming out from end of April, beginning of May, really focusing on the training and all the media that's going to be coming leading up to June. And yeah, anyone that's got a bit of change lying around that's willing to donate, or maybe you need to do a car boot or you want to do something fun to go and raise some money, come up with something, even if it's sort of going out like couch to 5k, maybe you want to get out and do something like that and raise some money and help us get to our goal of 100K please. I actually forgot to say that actually, somebody is running the London marathon for us, Josh, so we've got that as well. There you go. Right. That's awesome. Yeah. Anybody who wants to support the campaign, like we said, SMA have really got behind you guys as well and sort of pushing this so big thank you to them and yeah, best of luck for June. I got to be honest, I'm just relieved you didn't ask me because I'm going to be at home, wrapped up in my blanket and I'll be watching online. I'll be shouting from the sidelines, alright. I'm not going to lie, I remember Maxwell's mum's face when I said how I was climbing Snowdon and she freaked out, and then when she realized Max was doing it, God knows what your mum's face looked like then, Maxwell but I certainly wouldn't want to be in the room. Her face is still like that every time I mention that. Oh, man. Brilliant. Well, guys, thank you for taking the time out today and coming on the podcast and sort of sharing the word. I really hope everyone listening gets behind you, supports you, and like we said, shares the posts or donate if you can. It is all going to an amazing cause. And yeah, we look forward to chatting soon and seeing how you get on. Yeah, lovely. Thank you so much for having us. Thank you, guys. Thank you for watching another episode. We will see you again very soon. You've been listening to the Living with SMA podcast. We hope you can join us again next time. But in the meantime, don't forget to like and subscribe so you don't miss an episode. You can find out more on our website at smauk.org.uk.