Living With SMA

Ep34: Positive Mindset & Career Aspirations

November 28, 2023 Spinal Muscular Atrophy UK (SMA UK)
Living With SMA
Ep34: Positive Mindset & Career Aspirations
Show Notes Transcript Chapter Markers

Welcome to an inspiring episode of our podcast, where we delve into the remarkable journey of Sam and Alex, two extraordinary individuals living with SMA (Spinal Muscular Atrophy). In this heartwarming conversation, we explore "A Positive Mindset and Career Aspirations" and how their experiences have shaped them into the determined, optimistic, and vibrant individuals they are today.
 
Despite the challenges they've faced, Sam and Alex radiate positivity and embody the best versions of themselves. Their resilience and zest for life testify to the indomitable human spirit. In a world where many 18-year-olds may take their positivity for granted, Sam and Alex's perspective offers a fresh and inspiring outlook.
 
Join us as we journey through their university experiences, where they've embarked on intriguing projects that showcase their creativity and drive. From navigating the academic landscape to pursuing their unique interests, they share the ups and downs of their educational journey.
 
But that's not all—Sam and Alex have a dream to write a sitcom based on their misadventures and shenanigans. Their humour and camaraderie shine through as they discuss this exciting project, showing their boundless imagination and determination.
 
This episode is a reminder that a positive mindset can shape your outlook on life and your career aspirations. Sam and Alex's story is a testament to the power of resilience, determination, and the pursuit of dreams. Tune in now and be inspired by their incredible journey of optimism and ambition.

#PositiveMindset #Zest #DisablityCareerAspirations #livingWithSMA

THIS PODCAST IS NOT JUST FOR PEOPLE WITH SMA This content is not solely for the SMA Community. We hope this discussion will be helpful to everyone. ❤️ 
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Living With SMA disclaimer: The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or its employees. All opinions expressed by the Podcast Participants are solely their current opinions and do not reflect the opinions of SMA UK. The Podcast Participants' opinions are based upon information they consider reliable, but neither SMA UK, nor the companies with which such participants are affiliated, warrant its completeness or accuracy, and it should not be relied upon as such.

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. Now in today's episode, we're gonna be talking all about positive mindsets, which we think is a really important subject within the disability community because a lot of people often assume, if you have a disability that you are automatically unhappy or not as successful. And we're here to debunk those myths today. And I'm joined by two very cheeky chappies who are here to help me on that mission to talk all things positivity and mindset. Sam and Alex, who you may recognise from a previous episode of the podcast. If you want to go back and listen to that one, last time we talked all about disability and education, which was in episode 20. So guys, for our any new listeners today, can you start off by giving us a little introduction to yourselves? We'll start with you, Sam. So, yeah, I'm Sam, I'm the older of the two of us. I'm 18 and live in Derby. I've got type 2 SMA. And... Well, you're pretty much the same except your name's Alex. Yeah. I always draw the short straw here, because you're older, my introduction has to be the exact same as yours because everything else is true. It's just everything's the same, except my name is Alex. I'm two minutes younger than Sam. 18 years old, living in Derby, same things. Yeah, you'd think you're in charge, but I'm in charge. So, good night, mate. I love that. I love how you just looked at each other as if, well, it's the same information. We are the same. But for those that aren't sort of visually watching the podcast today, for those who are just listening to the audio, I should just point out, Sam and Alex are, in fact, twins. So that explains that. Just so you know, I'm Sam. It's the handsome one. Just Alex is ugly, for those that can't see him. Should paint the picture there. Sam, really handsome. Alex, can't bear to look at him. Thank you. Okay. I feel like we're gonna have a lot of bickering during this one and I'm here for it. I love it. All right, guys. So we are here today to talk about positive mindset and kind of like I said in the introduction, a lot of people almost don't like us to even talk about this or sort of show people that just because we have a disability, we can also be happy and positive within our lives. And this is something that's really important to you guys as well, isn't it? Yeah. Yeah. I mean, when people, sometimes people come and talk to us, and you can almost sense, there's always this kind of, they feel sorry for you almost right off the bat, just because they see,"Oh, you're in a wheelchair. So therefore you can't possibly have a happy life or a positive mindset." And what we try and do is really correct that and so people are very aware that it's not the case. We can have a laugh. We laugh a lot about our disability. Yeah. We like to poke fun at ourselves a lot. It's almost a way of showing that we're, it's not something to be, yeah, it's not something that you look at and go, "Aww." It's just, we're just normal people who are sitting down. And that's the way we kind of treat ourselves and in conversation, that's how we expect to be treated, really. Exactly. And I think it's important to note as well because I know there's gonna be some, there are some sort of cynical people out there who believe this but I think it's important to note that we can only talk from our own experiences as well. And obviously, everybody's situation when it comes to disability is different. And there's factors that can absolutely play into what kind of mindset you have. However, that shouldn't take away from the fact that we can still be positive. We're not here... This discussion here today is not to say life is all sunshine and rainbows because clearly it's not. Of course, we're regular people. We have our everyday struggles, but I think it's how you deal with that and how you move forward, isn't it? Yeah. Yeah. I think what happens is obviously there's, like I said, there's always the immediate kind of... Assumption. Assumption. Yeah. But then you also have to, everyone has their own issues. So mine are no different than yours and you're happy enough, yeah, you're smiling. So I'm the exact same. And like you said, we just happen to be normal people who are sat down. So it's just, everyone has their problems and we're dealing with them. In our own way. In our own way by laughing about it. Because it's all these feelings. Yeah. And a lot of it does come down to overall attitude, doesn't it? So like, it does come down to how you sort of feel within yourself, how you portray yourself and that general attitude because if you get yourself into a bit of a slump, it's quite hard to get out of that, isn't it? Yeah. I mean, we don't have those moments often, but I'm sure there are people who do have them. We're just trying not let certain things get us down, in that sense. But when they do happen, it's just a case of being there for each other. I think we're quite lucky in a sense because we both have SMA and so we all listen to each other's struggles and we're luckily there for each other all the time. So if we have those down days, we've always got each other kind of, leaning on and talking about it. But even if we do have those rubbish days, we still always try to find a positive out of what has happened. Just like, if something bad happens, I think, hey, at least it could have been worse. Or it could have gone this way, which would have been a worse situation. Yeah, because in a way, we're living a horrible life, so therefore, we've gotta find the positive. There's always something good going on. Exactly. Do you guys feel that because you're twins, you almost can support each other more in this? Do you find that you're more similar? Obviously, because of being twins, but is one of you more grumpier than the other? I want to know... Like we said at the beginning, when we introduced ourselves, Alex is the boss. I'm a bit of a pushover, really. I always try and think... I always worry about making sure that something's more beneficial for everyone else. And then Alex is just like, "Oh, just be mean. Who cares?" Yeah. I'm definitely the grumpier one out of the two but that's because of how annoying Sam is. I'll admit that. Yeah. I'm definitely the more, "Oh, get a grip. It's not that bad." Yeah. But I'm a bit more sensitive about things. I think about how it might make people feel. Even if I... Say I really, really don't like someone, I wouldn't say it because I know I'd hurt their feelings. But Alex would just come out with the biggest insult ever. Oh, it wouldn't be an insult. You would just see it in my face. That you meant it with every fibre of your being. Yeah. Okay. I know who not to get on the wrong side of now. Noted. Oh, dear. Do you guys sort of ever have this, I hate the word 'normality' and things like that. But of course, we have to sort of reference the norm as such. Do you find yourself having this desire for normality? Or have you got this mindset now where you've kind of accepted what... You kind of work with what you've got? I think we've never really been in denial of our condition. We've always known about it. We know the bad things that happen. There's bad things that come with it. But we always kind of try and work around it. We don't really kind of like that... We don't really think on the bad things, to be honest. Sometimes it does happen. So there are times where our mum might not be very well. And our concern is that she's got to look after us while she's ill. And every now and then, I'll kind of think to myself, "Oh, I wish that mum could stay in bed all day and I could bring her breakfast in bed." There's moments like that where it's not even about ourselves. It's about the people around us that it impact and how we can release that burden from them by normality. So yeah, sometimes I'll mentally think about it, but it's not very often because if you think about it all the time, then you'll never feel happy or you'll just pull yourself down all the time. And I think another thing that we've talked about is the fact that if we were able bodied, or if we'd been born without SMA, we would be different people. The only reason we have the mindset that we knew, the humour that we knew, the attitude that we knew is because of our condition and the fact that we want to live life to the full because we know our limitations and we want to overcome them and just have fun, really. That goes back to what we were saying about finding positives in any kind of situations. So yeah, we try and find what we can in these situations that is changing us for the better. I think it just motivates us to do, always try as best as we can. Yeah. No, it's a really important point and you worded that really nicely as well. A lot of it does come down to almost the personal acceptance, doesn't it? If you can't accept it within yourself or love yourself, then there's no way you can really have that positive mindset. I know, me personally, I would never say I've been in denial because similar to you guys, I've always known my capabilities and worked around that. But definitely when I was younger, that disability taboo was something I never wanted to talk about. I didn't wanna research it. I didn't wanna know what the future potentially would look like. I just felt very uncomfortable talking about anything disability related. Whereas I guess with time and confidence and that overall acceptance, now I'm more than happy with the work that I do to promote disability. But this is why it's so important to promote it in a positive light because it's not always negative. So it kind of is that personal acceptance journey as well, isn't it? Yeah, yeah. What you said about not researching it, I remember when I was like 11 or something, I did research. I Googled myself. I was sat at school and I Googled myself. But then that was when I found out that there was a potential life on it to SMA and I think that's kind of why I wanted that... It scared me when I first read it. But then I guess the way that we think about it is if we do have that life on it, if we live every day like it's our last, I guess we're gonna, when the day comes, I guess we won't have any regrets. That's why we take as many opportunities as we can and stay as positive as we can. Because otherwise, when the day comes we'll just have a bunch of regrets, of things that we didn't do, people we didn't meet and all of that. So I think knowing about it motivates us to live a life without regret, really. Yeah. It's funny you mentioned that because I was gonna ask, do you remember there being a specific turning point or moment that really made you think, "No, I'm gonna tackle this head on and take a positive outlook on it"? Whether there was a specific moment, but it almost sounds like you sort of doing your own research there kind of encouraged that. Yeah, definitely. Like I said, it was scary when I first read it. I think I just came home bursting into tears. But then after that, I kind of had that revelation and that's never gone away. I never want to waste a day doing nothing or something. But equally, with certain life illnesses, there's things that you can do about it. If you want to stay as strong as you can, you can do physio and you avoid illnesses and things like that. Once you know about the dangers of SMA, you feel really motivated to keep yourself in good physical health, so then you can... To be as healthy for as long as possible. So things like that make us want to keep strong. Obviously, in recent years, things have improved with medications, but there was a time when it was down to how much physio you're getting, whether you kept out of hospital. So things like that keep us motivated to keep going, I guess. Yeah. And a lot of people listening today might be thinking, well, it's all very well talking about having a positive mindset and doing that, but how do you actually take those first steps or wheels, whatever, and sort of start that journey? It's all very well talking about it, but how do we really change our way of thinking? What would you say? Oh. I think the way it went for us was to have doctors and people that helped us with our physical health and just... I think when, at a young age, it was that that changed. But then, becoming now 18 year old to understanding it a bit more, I think it's just now to, I guess, just knowing the limits of SMA and not being scared of them, but accepting it's there, but it's not problem because you're healthy now, and it's that perfect grey area where you balance acceptance and I don't wanna say ignorance, but I can't think of another word, as long as you accept what could happen and what will happen, but you don't let it get in your way. You have to kind of do the things that help you out, but also don't worry about the things that haven't happened yet. I'm not sure if that answers the question. I think it does. No, no, it does. It definitely does. And I think just to add to that as well, I think there's still a lot of societal stigmas and things, that within the media and other outlets that really sort of play into that sort of negative stereotype of disability. So, this is why a lot of the work that I do is, it's all about changing that perception because a lot of people are influenced by what they see, aren't they? So, if you've got people on TV or radio or magazines who are living a successful and happy life with a disability, I do feel like that does rub off on people as well. Yeah. See, all this people who haven't really been there will see it as ironic, which is weird, because they think, "Oh, you're happy despite having a disability," but that's really not how it works. It's just there. It's not, we might not see the wheelchair every day, but other people will. And I guess the point is, from just seeing the wheelchair, because there's a person right there and they're smiling, going... So, yeah, look at that, not the massive clunk of mechanics. Exactly. And there's this big sort of debate, isn't there, online, you see it a lot of whether there's the difference between equity and equality. Big, big difference there. For those that aren't sort of familiar with those terms and what that means, do you guys want to take it away and sort of explain your view on that? I guess it's, equality is more about treating everyone the same, I'd say, but equity is treating everyone how they need to be treated, so then everyone's at the same level. It's not about giving everyone the same things, it's getting everyone within the same level, I suppose. Yeah. So things like job opportunities, where it might be easier for some than others, with the same opportunity, but you need... Those people that are struggling a bit more need to be able to be given the chance to get at the same level as those that find it easy. So things like, for us, things like accessible facilities would put us at the same level as able bodied people, I suppose. If we have what we need to function, I suppose that's an example of equity, so then we can function as easily as we can, while able bodied people are also functioning at the level they can, both... Yeah. It is true, isn't it? It almost feels like over the years we've been pushing for this equality, that we all want equality in this. But actually, I think especially over the last few years, when equity comes into it, it is the fact that, yes, we want equality in the sense of we all want the same opportunity to reach that end goal of whatever that may be, whether it's work, life, social life, whatever. But actually, people's individual needs do need to be taken into account. I saw an amazing picture or a meme online where it showed the difference between equity and equality, where I think there was three people with different abilities and they wanted to look over a wall or something. The equality aspect was they gave everybody the same step to be able to obviously be higher to see over this wall, whereas actually, equity is giving people different steps based on their heights and their abilities or disabilities. And I thought that was a really nice visual way to look at it. I remember we got shown that in school, and yeah, that is exactly what it is. So with job opportunities, for example, it's not that we don't have the mental capacity, it's that we're not given the physical capacity to access the same opportunities as everyone else. We should have an office at the job of our dreams, but if there's a flight of stairs in that building, that's it, we're screwed. And all we need there is a ramp or a lift but... And then we're just as good as everyone else. Yeah. Yeah, a few reasonable adjustments. That's all we're asking for, isn't it? Yeah, yeah. Not much. No, not asking for the world. When we talk about positive mindset, a lot of, in your guys' situation, from what we've seen already from this podcast, it comes from your humour and your ability to laugh at yourselves as well. Where did that come from? Because I feel like it takes a certain type of person to be able to take the mickey out of themselves. I think we've never really been like really mature, to be fair. We're always a bit... I mean, you described us as cheeky at the beginning and that's exactly it. We've never, as much as we are motivated in life, we don't really take it too seriously. So I suppose the opposite of being is to laugh. And I guess that's why we make jokes about it. We can't really, we can't... If we said the jokes that we make in a negative way, it would just sound depressing and it would make our lives sound absolutely rubbish. So I suppose if we laugh about it, it kind of... Not only for us, it helps with the level of acceptance, but it shows others that we're just normal people who are funny and laugh a lot. I disagree with what you said about maturity. I think it probably takes more maturity because you have to be more mature to accept certain things than it was to ignore them. So we've accepted it and then flipped it on its head as a joke that we're not being mean, we've accepted everything that comes with being disabled, and we're then able to laugh about that in a way where we're okay with it and it's not like a gig at anyone, it's just how we see it. It's just that we're on top of everything that should affect us negatively and we're able to just... Talk about our own... Yeah, and laugh about it. Yeah. Well, Sam already told us at the beginning that you are the mean one, Alex. So I don't know if we can believe that. Well, I am the mean one. I'm sorry. He is. No, but I think there is a fine line, isn't there? I think almost taking the mickey out of yourself and making a few disabled jokes or however you do it, is almost, I personally feel, I'm guilty. I do exactly the same. But for me, that's almost like taking control of it. It's different if somebody else does it or if somebody else... Okay, friends and family aside, you can accept that, but if a stranger on the street is gonna make, and I quote, "a joke," I wouldn't take that as well as almost owning it and me making that joke first almost like I've taken control of this situation. For my own mindset, that makes me feel better. Do you agree with that? Yeah. I mean, we have also, like social media videos, we have people... We've got a video that's got thousands and thousands of views and so many people are just commenting the same joke over and over, and it's so boring. But I think we talked about it. It's about... I can't remember what we said. We made a video about it on our social media talking about how if we make a joke, because we have that perspective on it, it almost... Because we understand it first, that's why we can make jokes about it. But if someone else makes jokes about it, it's just... It doesn't... I don't think we... Like we're okay with jokes, but like... It's the same way we're going. It is really annoying. And we always say, it's not that we're not okay with the jokes, it's just that they're not funny. Like if you're gonna do it, think of something original and make it good. But yeah, I get what you're saying about people online and people who you've not met before making jokes because they're just doing it based on their 5 second judgment where they've seen you in a wheelchair, and they're going, "Ha! Hot Wheels," or something. It's not well thought through. It's not friendly. It's just... No. I think people often realise that, "Okay, it might be funny for them, but this is probably the hundredth time we've heard this joke now. So for us, actually, it's not that funny anymore." I'm sure you guys can relate. It's how many times as wheelchair users have we heard the terms, "Oh, you're speeding?" Or,"You'll get a speeding ticket," or... It's... Okay. Yeah. It's funny, but actually I've heard that so many times now, it's really not funny. The rule with stuff like that is, if you've thought it, a million other people have said it. So if it's just the first thing that comes into your head, you don't say it because it's not gonna be funny. It's gonna be a thing you've heard a million times. Think of something that no one's ever said before and I'll be fine with it, but don't keep saying the same things that everyone else says, because overall, we know we're disabled, we know we're going pretty fast, so... Do you guys think that the humour aspect of positive mindset is almost a bit of a defence mechanism? Because I've got quite a lot of friends with disabilities and wheelchair users, and to be honest, we've all got quite a dark sense of humour. I feel like that's quite a common theme within the community because we've had to go through a lot of things that maybe our other peers haven't and we've almost created this humour as a defence mechanism and our way of coping. Have you found that? I think probably yes, because I guess sometimes, it can be a negative thing because if you don't ever talk about it, then that's just as bad as never... Yeah. It's you have to talk about it sometimes in a serious manner. However, laughing about it is the better option than hiding yourself away and isolating all them thoughts you're having. It's better to say it in front of people so they kind of know you're comfortable with your disability. I think that's what it is. The defence mechanism is trying to get people to know that you're comfortable with yourself and therefore, they can be comfortable with you as a disabled person. It's like an icebreaker in conversations with new people. Yeah. So, defence mechanism probably is, it can be the right thing, but for us it's more of a, like you were saying, icebreaker, breaking down those defences on how other people might feel about disabilities and getting them to see that, yeah, we can have a laugh about it. We're not awkward with it. And yeah. Just. Yeah. And Sam, what about sort of the coping mechanisms with this then? Because as we said at the beginning, not everything is obviously, we wouldn't be human if we didn't have down days as well. So when you do get those moments of frustration and those down days, what coping mechanisms do you have or what do you do to really sort of try and maintain that positivity? I think, well, obviously, it's always great to have people you can talk to. Having Alex has made my life so much easier. I don't know what I'd do without him, to be honest. So it's just about having people around you, who... Almost who... Obviously, it's great to have the people that you can make jokes with, but it's also even better to have the people who you can have a serious conversation about it with, because the jokes is acceptance, but then the serious conversations are about a full on understanding of everything. So while the jokes are great, it's good to have those serious conversations with people and help them understand you a little bit more on a deeper level. Yeah. And is that what you guys do? Because you put out a lot of content online and a lot of the content is aimed... It's funny, it's lighthearted. Is that something you aspire to sort of continue doing, sort of try and change people's perceptions as well? Yeah. I mean, we always joke about, we do so many things in our lives and we could write a sitcom about it. Sometimes I literally just sit and imagine, how would today pan out as a sitcom episode? But if we were to do that, obviously, we'd have the jokes and the humour, but also showing the serious side of it. Well, we could make jokes and we could just do that all the way through, but it's also about having the positive message that we want to get out that we're normal, we're just like between like normal people, really. Yeah. And do you guys have the sort of mindset as well, that you just, you don't want to waste any time. You want to just achieve and do as much as possible now. Is that something that is really important to you guys? Yeah. I think we hate doing things that we're not gonna enjoy, like spending time with people who don't necessarily get it as much. We want to... The time and people are big values in the life of anyone with a disability, I guess. Well, anyone at all, but especially with disabilities, because there's certain things that you can't control and you need certain things that you can control in order to be stable and feel like you've got that support system going on. But yeah, we definitely don't like wasting time. We wanna just do what it is we wanna do and just enjoy a fairly normal life, hopefully, with minor inconveniences. Yeah. We're doing what we can at university at the minute to work as hard as we can, just as hard as everyone else. We're aspiring to get a successful job and families and friends, and things like that. So yeah. I feel like a lot of people with disabilities as well... I mean, obviously, again, I can't speak for everyone, but I feel like we almost, we feel like we have something to prove. So we're always almost striving even harder to make a point to people that, "I can do this. I want this." I'm not holding my hands up and saying, "We all work harder than everyone else," because that's not the case. However, we do really have that desire and that motivation to really push ourselves to achieve something, don't we? I personally have always had this sort of built in idea that I wanna... It sounds really morbid, but I really want to like leave a legacy. I mean, I don't plan on going anywhere anytime soon. That sounds really, really morbid. And we're here to talk about positivity. But for me, that's been really important in my life to almost achieve my goals as best and as quickly as I can, because I really want to leave an impact on the world in some way, shape or form. Are you guys similar with that? Yeah, I think so. I think going back to what you're saying about working hard, because of... Let's just say that our bodies don't exactly help us out. Like it drags us down a bit, so we have to elevate what our brains can do in order to get to the same level as everyone else. It's just... It's an immediate disadvantage in certain aspects. Like we all know that, so that's why it's really important to work hard, get things on your CV that are important in what you wanna do. Yeah, it's just about doing what you can to get the same opportunities as everyone else. Because we always say like, and this is something that motivates us to work hard, it's like, if we went in for an interview and showed someone our CV and then an able bodied person came in and showed their CV, it was exactly the same, the person hiring us would probably choose the able bodied person because obviously, while we're both as good and capable at the job, it's just easier to have the able bodied person. So if we go out and achieve what we can, as much as we can, above whatever else has been done, then someone will look at our CV and go, instead of going, "Oh God, they're disabled," it'll be, "Oh my God, this person will be so good for the job." And it's almost like a distraction from the disability in a way, because it's like... It's not a distraction, it's a focus point. Yeah. We want the focus to be on our abilities and what our brains can do, rather than what our legs can't do. Yeah. Again, it kind of just comes back to almost feeling like you have a point to prove, you wanna do as much as possible to prove that you can do it just as well, if not better sometimes. So yeah, no, I totally get where you're coming from with that. In terms of positive mindsets as well, I just want to touch on a bit of self care, because I feel like this is an important part of having a mindset. I know for me personally, if I'm sort of struggling or feeling a bit down, that sort of self care element plays a big part in how I pick myself back up again and push forward to be a bit more positive and motivated. So I just wanted to ask you guys what do you do in terms of self care? What makes you happy? I think, this is not gonna answer your question at all, but it's just how we do it. It's just doing things that everyone else will do. So playing video games, just doing things that are fun instead of... Obviously, we knew, as we've said, we'd have those conversations that we needed to have about with each other about certain things that limit us and when it gets us down, we have them conversations. But for us, self care and getting over our disability is doing everything that everyone else does as much as we can, just to prove the point that it's actually not that big of a deal. And again, that's probably gonna answer your question, but it's just how we do it. It's not ignoring our disability, it's just minimising how much it impacts us and how it impacts how we feel, because as we've said, we're just normal people who happen to be sat down. So we just do everything that everyone else does, and that kind of helps us feel as normal as possible. Yeah, I love how you gave a really thought out, sensible, nice answer there. We're talking about what makes you happy, and my head was just like food. Straight away, it was gonna be wrap me up in a blanket and give me a takeaway. That's my self care. Oh, yeah. Yeah. That's everyone's self care. That's the best thing. Yeah. What takeaway? To be fair... Oh, it's gotta be a Chinese for me. It's got to be. Fans of that. Guys, on a final note, I just wanna ask you how do you think, as a society, we can make the world a more positive place? And if you've got any advice that you could share for anyone listening today about how they can improve their mindset, let's end this on a high. I think it's just about... It's you don't see yourself as any different than anyone else... I mean, sure, there's gotta be a lot of exceptions like we've said, but I think it's just about realising that you are just as capable as anybody else, if not more capable, because life is throwing so much rubbish at you and you come out on top. So I think it's just about being able to see that something always turns up, something always comes along, something positive, and it's not all doom and gloom, and just make sure that you do everything that you want. Don't live a life with regrets, because you don't know what could go wrong and stop you from doing that. I think, for people with disabilities, we could probably say, if you want to be normal, if you think that you should feel normal, then that's just all the proof you need to say that you are normal. If you think and feel the way that everyone else feels, then you are the way that everyone else is, you just happen to be sat down. So, you're not weird for being in a wheelchair or having a disability. Some people actually find it quite cool. Yeah, we have equipment and things that we use for our uni, and people find it really cool. So, almost show off a little bit, if you want, because that's how you make it. Yeah. But then also, people with no disabilities, don't just judge people by how they look. We're all people, be nice, and yeah, just... And definitely don't speak to us like we're babies because our brains work. It's just the legs. Yeah, it's just the legs. It's a good point. No, you definitely made a good point. And I think, again, it just comes back to that sort of personal acceptance. It's accepting your capabilities, what you can and can't do, and use the community to your advantage. A lot of us are in similar positions. And yeah, reach out to people within the community, whether that's online or in person. Sometimes just talking about these issues, sharing your experiences, you can find sort of a bit of light in those dark places as well sometimes and create a little bit of humour there, just to really sort of turn that mindset into one that's more positive. Guys, thank you so much for joining the podcast today and sort of sharing an insight into how your minds work and what does and doesn't work for you. Anybody listening, if they wanna sort of keep up to date with your content and what you put out there, give us a plug, where can people find you? We're on YouTube as Sam and Alex, surprise, surprise. We're also on TikTok... TikTok, Instagram. Instagram. We post reels every Thursday. We try to post some sort of funny content and then every now and then, we'll do little posts about things that help us in our daily lives. I think we're also about to start a Twitter account... No, sorry, it's not Twitter, is it? X. Sorry. I think we're gonna start that soon, so in the next week or so, we might be up there. We'll just post our thoughts and people can respond if they want. Weird

things that may pop up in our minds at 3:

00 AM in the morning that we just wanna say... Yeah, and that's just a little insight into our weird brains. Or just more bickering. I think people quite like to see you guys just arguing with each other. Why not? Yeah. We'll just record videos of us debating. That was cool. I love it. Guys, as I said, thank you for joining me today and to our listeners today as well, we hope you enjoyed this podcast episode. As always, the SMA community is here. If you want to reach out, just head to the SMA UK website. And if you want to catch up on any of our previous episodes, you can catch them on the website or our YouTube channel. Thank you for listening. We'll see you 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.

Host introduction
Guest introductions
We laugh alot
We just happen to be normal people, but just sat down.
As twins do you find it easy to support each other
If you think about it all the time, you will never be happy
Disability Taboo
Live life without regrets
How do we change our way of thinking
Influenced by what we see
Pushing for equality
where does that personality come from
100th time we have heard the same joke
Humour as a defence to cope
Its funny and light hearted
Leaving an impact on the world
feels like you have a point to prove
Got to be a Chinese for me
Excepting your capabilities
Outro