EP 44: Resonate 2004 - Adventure Without Limits

Resonate 2004: Adventure Without Limits – A Look Back at 2024 Join us as we rewind to one of the most inspiring moments of Resonate 2024 – Adventure Without Limits at Calvert Trust Exmoor. In this special reflection, we sit down with brothers Sam and Alex Bolton, who took part in a weekend full of excitement, courage, and firsts. With heartfelt input from their PA, Natalie, we hear what it meant for their family to be part of an inclusive adventure experience where barriers were broken, and limits redefined. From climbing walls to zip wires, canoeing to abseiling, the Boltons share how the weekend opened doors to activities they never imagined possible. This is more than just a trip down memory lane – it's a celebration of possibility, accessibility, and the joy of trying something new. Come be reminded of the power of adventure, community, and the lasting impact of creating spaces where everyone can thrive.

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Transcript

0:04

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 there and welcome to the next Living With SMA Podcast episode. And today we're going to be looking at Resonate 2024, looking at some of the highlights, some of the recommendations from the community, and also whether people would want to go back or not. And I'm obviously joined by some wonderful guests. But just as a way of introduction, it's great to be back again on the podcast as a host. My name is Luis, I have spinal muscular atrophy type II, and I am in Essex, and definitely looking forward to getting into this topic with people who are joining me today. So whoever would like to go first, please introduce yourselves. Hello. I'm Alex, I'm 19 years old. I have spinal muscular atrophy type II. And I'm Natalie and I am the PA of Sam and Alex, and I am 40 years old. I'm Sam, I'm the brother of Alex, and I'm also 19 years old. Fantastic. It's great to have you with us today. So, let's just jump straight in. Let's talk about last year, what was Resonate like, what left the biggest impression on the three of you? So it was, this is our first time going last year and I think we were... It was the first holiday we've been on by ourselves, and I think it was just a really great experience for people who've often worried about whether we can actually do the kinds of activities that Resonate offers. So it was a great, just an amazing experience where, on the rare occasion, we didn't have to worry about our access to the experiences that they were offering. Amazing. And what about you, Alex? Yeah, I think it was, honestly it was such a good experience for us. I think before we went, I was so worrying about what it was going to be like, like Sam said, we'd never been before. And so, we were sorting out what we needed for Resonate and there were so many things on the checklist, well, it got us a bit scared. But then, the minute we got there, it was like, "Wow, this is so easy." And also it's fun. And so, yeah, it was just a really good experience overall, really safe, really enjoyable. Amazing. I'm really glad to hear that. I think, I went to Resonate 2023 which was the first edition of this event and I was part of the, I guess the birth of the idea during my time at SMA UK. So, to actually see the success of it in 2023 and also the success of it last year, it makes me really, really proud, and I think it's always good to hear different perspectives and we've had some really great feedback from the community. But, what about yourself, Natalie, as a PA, what was it like going to an environment that most people don't know exist or concerned that it's going to be adequate in terms of the support provided and the accessibility of the venue? Yeah. So like the boys said, before we went, we were sort of a bit unsure about how it was going to go and a bit nervous that we would be able to do the things that they wanted to do and it was accessible. But like Alex said, when we got there, there was everything they could do, everything, there was no boundaries, there was no red tape as it were. They could just be normal 19 year olds, which, for me, was amazing to see because they flourished in that, that small space of time, they just got to do things that they wanted to do and there was no limitations at all and it was just amazing. I'm really glad to hear that. And did it surprise you that it was so accessible and so interactive? It didn't surprise me. It made me sad that there isn't other things like that, and I'm so thankful to you guys for providing that kind of environment that they can experience. Yeah. When I came across the Calvert Trust and for the first time I really just thought that this is something so unique and we need to create opportunities for the community to experience it. So, you've already mentioned activities, the three of you, what was your favourite activity? Let's start there. Ziplining was absolutely awesome. And I feel I keep repeating myself here, but it's something I never thought I'd be able to do, and just it was so easily accessible going in it blind and something that unless I go to Resonate again, I won't get to experience very often. And it's just like being in a hoist, but dialing up for 11. So... Really? Yeah, that was definitely my favourite activity. Epic. And what about you, Sam? I think on the second day, we did the crate stacking and that was something everyone had talked about from the year before, like, "Oh, my God, you got to try the crate stacking." So, we gave that a go and I think I managed to get all the way to the top, which was pretty scary but really fun, and I think that was a really enjoyable experience for me. Yeah, I love the crate stacking as well. My partner really struggles with her balance and we got to 28 crates, so not quite all the way to the top. But yes, definitely a great experience, especially when they kick the crates out from below you. For me, that was probably also my favourite. Natalie, how about you? I loved the ziplining because I loved the expressions on their faces, it was just pure joy. It was beautiful. But I really enjoyed the going on the boats, on the water, because you've never been able to do that before, have you? No. Yeah, it was fun. Yeah, I'm dying to do that. In 2023, unfortunately we were, I guess, bombarded with a lot of rain, they had a month's worth of rain in two days, so we had to cancel some of the activities. I'm really hoping that this year I have the opportunity to go on the water because that's also something I've not done before. Did you participate in any of the activities, Natalie, or did you just support? All of them, I think. Yeah. Yeah, you did them all. Yeah. I got some on my phone as well. Amazing. Good. Good. What I really loved is the fact that it's not just for disabled people, the fact that the able bodied people can participate and quite often compete. What most people don't know is from the first event, myself and Gary's mum ended up having an archery competition to see who would score the highest and I promised that I would keep the title last year, but sadly I couldn't go because I had some challenges with PAs. Hopefully this year, we can reignite that rivalry and see if we can... Yeah. The war begins. Archery was technical for us as well. Yeah, it can be. Yeah. Yeah. Yeah. So get ready for that, we'll be there. We'll be... Okay. Good. I'm looking forward to the challenge. We know that some of the activities and that I was really acutely aware of were going to be pushing people's boundaries. What did it feel like going out of your normal comfort zone and experiencing an activity that you thought you wouldn't, either wouldn't be able to do or might not be brave enough to do? How did that feel for the three of you? I think it was... I think, before we went, I was worrying about, for example, the canoe goes over or something, and I didn't realize how, the measures they put in place. With the ziplining, they had a head brace that held, supported our necks, because without that, we wouldn't have been able to do it, we would have just been flopping about. So I think, I didn't realize how amazing the accommodations were. And that certainly eased my mind a lot because, like I say, I was worrying about how it works, will we actually be able to do it? But as soon as we got there, we saw how easy it was to get attached and take part. It was just, I wasn't nervous in any way, I was just excited to do it when I knew I was actually going to be able to. Amazing. And what about you, Natalie, as a PA who's there to protect your client, what was it like seeing the both of them doing things that they wouldn't normally do? I thought I would be quite anxious about it because I do tend to go into mummy mode, very protective of them. But I tried to go with the headset of"This is something that they can do that they can't normally do," and try and not let my worries stop them from doing anything, which, I think was really, really important. And they just, like I said before, they just flourished. You went in and you just got on with it and they enjoyed every minute of it. And it was just amazing to see. Fantastic. And, Alex, was there a moment in any of the activities where you felt, "Oh, I shouldn't be here," but then followed through and realized that actually it was a lot of fun? Yeah, I think by the end of being on the canoe, I was ready to get off. Okay. By the end of that, I was ready to get off. But no, in all seriousness, no, once we got there, as we've said, we saw the facilities and everything and we knew it was going to be amazing. And I think we just simply went in with the mindset of, "It's going to be scary, but those scary moments are the things that make it worth it." And so, we wouldn't be there if we weren't in safe hands. And so you just have to let it slip aside and just enjoy it, otherwise you're missing out on one of the best weekends ever. Amazing. Amazing. And, I know that quite often, accessibility is a barrier for a lot of people, and in particular for the SMA community. Even though things are "accessible", sometimes there are still barriers. Did you experience anything like that while being there for the weekend? No, no, not at all. I think we had everything we needed. Yeah, it was just a really great place and having all the facilities we need. Absolutely nothing got in our way. Granted, there are things where we have to think a couple of steps ahead in terms of making sure we're comfortable on the zip line or the canoes. It's still, it was, it spoke well about the stuff that were there and their education and their patience, making sure everyone got to do as much as possible. And so, yeah, you just have to commend how good they are at making it feel as normal as possible. Mm hmm. Is there anything that you want to... And they... Sorry, Natalie. You go... Sorry. They went out of their way to make sure that you were comfortable as well, didn't they? And, obviously all the health and safety and everything was fantastic because they've thought of everything. Yeah, absolutely. Would you like to add something to that, Sam? Just, I think just, yeah, like everyone said, it's just you often assume that there are things that you're never going to be able to do. Until I found out about Resonate, I never thought, ooh, ziplining is on my bucket list because that's something I'm going to be able to do. I think our mum did an abseil once and I remember just being like, "Whoa, that's awesome." And then I was just like,"Okay, that's never going to happen." And then when we get to Resonate, we're rolling down a vertical wall. It's just crazy how accommodating it was and how many things I was able to do that I'd never have expected to do. I know the whole weekend experience can be quite empowering and quite often inspiring for individuals like us to do more in other areas, but what would you say was your most empowering moment? Sam, let's start with you. Probably when I stay up late in the night. Oh, look at you, big boy. I went past my bedtime every night. Okay. I think it was just the fact that, like we've said, nothing was off limits. And, you often... As optimistic as I try and be, there are things where I'm just like, "Okay, not going to be able to do that. Let's not think about that." But I was there and I was almost overwhelmed with all the options, I was like,"I can do all of these things, but I haven't got the time to do all of them." It's just about, just the lack of limitations, is just really... I can't even... There's not even a word to explain it. It's just such a freeing experience with all the choices and the means to do everything you wanted to do. Yeah. That's great. How about you, Alex? Yeah, I think I'm not going to go for the usual answers, but I think one of the things thinking about it, I noticed was just the general facilities of the building in the sense that, sometimes when I'm at uni or out in town, you have to get people to open doors for you or help you with certain things, but the facilities at the place allowed me to be just as independent as anyone else. And I think it's an important thing when you don't have to think about the barriers that are in your way. And I think whether it's the facilities or the activities themselves, that was a big empowering thing for me to be able to ease my mind of the usual daily worries of being disabled. So, yeah, I think it was quite nice to be free of all those worries. Amazing. And, Natalie, we've already heard some really great examples of how they've done things out of the normal routine whilst on the Resonate weekend. But for you, apart from the ziplining experience, what jumps to mind when you think about how different Sam and Alex were in comparison to being in their home environment? They were just independent, they were free, they could go and do what they want. They could, like you say about it, silly things that people don't think about unless you've got a disability and things like doors and being able to get everywhere, they would go,"Oh, I'm just going to go and pop to the canteen and stuff," and I was like, "Okay, that's fine," I don't have to worry about it. Whereas, when we're out and about in the community or at university or whatever, we have to think of those things ahead, and we didn't have to do that. It was just, it was relaxed, wasn't it? It was, everything was there for them. We didn't have to ask for anything, it was just there. Yeah. And, sometimes I think it's one of the challenging parts about living with a disability. And I don't know if this is solely just the SMA community, but what I've experienced since living in the UK is that it can quite often be very disconnected because we live so far apart from one another, and quite often we only really get to see each other when we're going to major disability events like the Naidex and the Disability Expo type of events. What was it like for the both of you to be around your community for three whole days and nights? What was that like? I think it's... I think, so first of all, for me and Sam, we've always had quite a unique situation in the sense that we have each other. And so, before, we've never felt the need to speak to many other people with SMA because we thought it was just us and we can relate to each other and that's all we need. But going to Resonate, there were a couple of people that we had already met before but got the chance to spend a fun weekend with, that just simply enhanced our world of the SMA community, which I think was quite nice just to see other people and just enjoy that environment together for a couple of days. Yeah, absolutely. And how about you, Sam? I think... Yeah, I think Alex pretty much covered it, really. I think it was just, there are so many people that we haven't properly got to know yet that we were able to interact with and enjoy experiences with. And it was just great to see some of these people in person. We have... On social media, we follow them and we see all their stuff, and then it's almost like you're seeing celebrities, almost. Like Toby, Toby Mildon, he was there and I saw him parking up across the back. I was like,"Oh my God, it's Toby." It's like meeting celebrities. Epic. And I guess, Natalie, for you, what was it like to see them engaging in that way? And how important do you think it is for communities to host events like this? I think it's really important because just seeing them with other people that they can relate to, I think very much so that when you've got something like SMA, you can feel quite disassociated, if that's the right word. Is that the right word? Yes. Okay, that's good. And it was just really good to see them to be able to connect with other people that understood what they were going through in their experiences, because they are very different experiences to normal people. But yeah, it was just really, really good to see making those connections. And like Sam says with Toby, Toby's amazing. Do you believe it added value in maybe growing Sam and Alex's confidence to be doing these kinds of activities but also meeting those unsung heroes or celebrities, like Sam said? 100%. If we could go and do it every weekend, I think we'd be there, wouldn't we? Yep. Like, "Sod everything else, we're going." It just, it helped you grow, didn't it? Yeah. And it was good to be around other people with similar experiences. And it was good for me as well because I could learn from other people, how to support them better as well. I think that as well. When you get to our age, when looking at jobs in the future and maybe at some point in a couple of years, living by ourselves and could see events like this, in which things, like moving around and building without help and doing all these activities, it gives you a weird sense of hope about the future and the kind of things that with the right fight, you will be able to do. Amazing. And, Sam, I think Alex has put that so eloquently. But for, I guess, young adults going into a world that is becoming more and more accessible and inclusive because of the amazing work being done by etiquettes, how does that feel for you? Alex says a weird sense of hope. But what do you think that differentiator is when you're around your peers like that? I think you often develop, when you live with a disability, a level of acceptance. And obviously that makes regular living a bit easier when you know your limitations, but when actually all these new options are put forward to you, it just gives you a sense of opportunity. Like we say, we're hoping to have careers and independent living at some point. And so being somewhere like Resonate is just such a, I'm going to say, reassuring place. It's things like, we struggle with eating and so the chef had made food really soft. It's little things like that where people are able to provide those things that we didn't actually think we needed, but that's still there and they make that one thing so much easier. Yeah. I think that's one thing that really surprised me the most about the Calvert Trust was how accommodating they were and actually listening to the community coming to their venue, and understanding why our needs are important and putting them in the best position to support us. What was one of the most surprising things that you learned from one of your peers about life or about work? I'm just trying to think. I think there were just, there were a lot of nice conversations that we had with people, like Sana. Sana has her social media accounts and we learn a lot from her about the kind of content that she shares. I think I've got just things like that about how, she talks about more openly every aspect of her life with SMA and she helped me and Alex tap into that a bit more. So, over the last year... Amazing. Over the last year or so, we've now done that a bit more, we've been a bit more open. And I think things like that, obviously it's, Resonate was a very... It's all the same people from the same community. But also learning about how to spread, how to share the information that we have from our community to other communities is just as important. We can't just confine the knowledge and the accessibility and the opportunities we have to the SMA community. I think it's also about making sure that other people are aware that this venue down in Devon is so accommodating, maybe you could learn a thing or two from that. Amazing. What about you, Alex? Yeah, I just think Sam's pretty much nailed that. I think, I just fully agree with. We have, the way you said that, it's just... Yeah, it's just so incredible. Amazing. And Natalie, you referenced earlier that you learned so much. What stood out for you? What was one of those key golden nuggets that you picked up over the weekend? I think that things are accessible if people just make a bit of effort to look into it a bit deeper. And things such as the archery, never would have thought that we'd been able to do archery. And they made it possible. And it just shows that you just need to make a little bit of tweaks just to make everything more accessible. And like Sam said, with the food and stuff, they made lasagna. You've never had lasagna before, have you? Yeah. And they loved it. And I made you a lasagna actually, so I... Yeah... owe you one. Yeah, I think... Sorry. One of the... We were talking to Toby once, actually, about university project of ours and a quote that he used, and that means I'm playing use quite a lot now, which I think is really important, that is, we are only disabled because of the barriers in society. Take away them barriers and nothing is impossible. So I think that's the important thing about Resonate, it removes those barriers. Absolutely. That brings me on to my next question. We've really spoken a lot about how inclusive and accessible the environment was, but let's just talk about the atmosphere for a little bit. What was it like to be out in the outdoors, fresh air, peers around you, and in an environment that's so welcoming? Just, how would you encapsulate that in one or two sentences each? I think I remember when we first arrived, we arrived like three hours early, and we were just sat having lunch outside looking at the big lake and it just felt so... I was just like, I felt so relaxed and I'm going to say free, I guess. Yeah, it was just a brilliant, natural, relaxed environment. And I'm really glad that my hay fever didn't play while I was outside. Epic. What about you, Natalie, what was it like for you? Like I said before, just seeing them being able to do things that they've wanted to do for a long time and never thought they could, and just their expressions, I know it sounds silly, but just the little faces when they were, just pure joy, it was just pure joy, and it was just magical for me to see that. Alex, well, how about you? Yeah, I think it's, with Resonate, there were two main qualities and it was both the excitement of the activities and then just simply getting to sit there and enjoy the environment. We were just... But once we'd settled down, there was one night where we just went on a walk near the lake and it was just, it was so nice and calm and peaceful. And luckily, because our chairs are so capable of going off road, it just meant we could go anywhere around the area and enjoy that natural environment. And maybe one word of advice that you could give the community, if anyone was on the fence about whether they should go to Resonate or not, what would you say to them? I would say you can go as long as you don't take our tickets. No, definitely go. It's so fun. It's so enjoyable. And I think, like I said before, the important thing is it will give you... It will elevate you and make you feel hope about the future. I know a lot of people in the SMA community are quite positive, but I feel like if anyone ever needs to see what is capable with that little bit of effort, go to Resonate because it's the most accessible and fun weekend you'll ever have. Sam, what about you? Well, obviously I'm going to say do it. Definitely. It's just the most incredible eye opening experience. If you think that, there are things you can't do, it's just that, it's just one weekend a year, but it's completely changed our perspective on what's possible and it's just something that everyone who feels like they're limited by their disability should experience. So just, yeah, do it. Have some fun. Feel the wind in your hair, and don't get seasick on the canoe like Alex did. By the way, I have to say this. They have not let this go. I got a little bit seasick, most likely because I didn't have a good breakfast that morning. You had ice cream. I got a little bit seasick. Let it go, guys. You had ice cream for breakfast? Yeah. Yeah. It was left over from the night before and I was just like... You're on holiday. Yeah. The weather's nice. Just... It's for breakfast. I think that could be a whole another episode for the future, what to have for breakfast at Resonate. Yeah. And, Natalie, considering tickets are going to be going live on the 1st of May, which is not very far away, what advice would you give to any PAs who might be umming and ahing about whether this is an appropriate environment for someone with a complex condition like SMA? I would say just do it because it is worth every minute and just... I know I keep repeating myself but just to see the change in them and the experiences that they had, don't put those restraints on the people that you are caring for, just let them enjoy it and just support them through it and you will reap the benefits as well because it was amazing. I guess it's a silly question, Sam and Alex, as to whether you're going this year, right? It's a very silly question. Absolutely. I'm going as well... Epic. Epic. I'm so glad to hear that. Hopefully I get to see you there. In terms of closing remarks, I think from my end, what I really, really, really appreciate about the Calvert Trust is, if people don't want to participate, there are still opportunities for them to just go and relax and enjoy the scenery and go touch the horses and, all of those environments don't create a space where people are forced to do things that they don't want to do. So, anyone listening, I really want to encourage you, just because you attend doesn't mean you have to partake. And who knows, if you maybe step out of your comfort zone just a little bit, you might be able to experience a different side of the world that you might not normally see. I just want to say thank you so much to the three of you joining me today on this episode, it's really been fantastic and it just makes me feel so warm and fuzzy on the inside to hear that something that I was part of creating a few years ago is still having the same effect that I wanted it to have on people. Just, it really brings me a lot of joy. So, thank you for spending your time with me. And, please, for the listeners, subscribe, like, comment. And also, if there's any other topics that you want to talk about or feel that are really necessary for SMA UK to cover, please reach out to us and we'd be more than happy to create a slot for you to have some time to speak about any topic about living with SMA. Sam, Alex, Natalie, thank you so much for your time. Thank you. Thank you. Thank you. Bye bye, everyone. 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.