20 - Part 1: Disability & Education

Welcome to the Living With SMA Podcast.

In PART 1 of Episode 20 of the #LivingWithSMA Podcast, SMA UK Host Ross Lannon chats to 17 year old twins Sam and Alex about having a disability and being in the education system.  We discuss how difficult it was for Sam and Alex to find an accessible school close to home and we also talk about social media and how it has developed over time.
 
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Watch this episode on our YouTube channel here.

Each of our guests today shares their own personal views and individual stories.

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twitter.com/SMA_UK_
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If you do have any questions for Ross, Sam, Alex and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk

Living With SMA - 'Disability & Education' disclaimer:
The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or 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.

Transcript

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0:00:01.6 Intro: Hi there and welcome to the Living With SMA podcast. We're here to have conversations about living with spinal muscular atrophy. Throughout this podcast, we will be covering lots of different topics from preparing for university, getting the most in your personal budget, sex and relationships and lots lots more. So we invite different hosts from across the SMA community to come together here. We want to answer your questions, provide you with useful tips and recommendations and also share personal stories. So please do reach out and connect with us here at the Charity SMA UK. Thank you for listening and we hope you find the podcast useful.

0:00:46.2 In part one, we'll be talking about having a disability and being in the education system. We'll also discuss how difficult it was for Sam and Alex to find an accessible school close to home. And we also talk about social media and how it has developed over time. Hello everybody and welcome back to a brand new episode of The Living With SMA podcast. Today, I am joined by some very special guests, double trouble, we should say. Before we jump into talking about what subject we're gonna be discussing today, we'll have a little introduction to the team. So if I kick things off, my name is Ross Lannon. I am 29 years old and I'm a lifestyle and disability blogger from Cornwell. I'm gonna hand over now to these guys. So Sam, do you wanna kick off and introduce yourself?

0:01:44.8 I'm Sam, I'm 17. I'm currently studying at college in [0:01:51.0] ____.

0:01:52.3 I'm Alex. I'm also 17. Obviously me and Sam are twins. And we are both studying in college and we're studying media. So we do filmmaking and we make all sorts of silly videos and crying and complaining people. Sam is older than me by a few minutes. He thinks it makes him the boss, but I'm much more bossy, yeah.

0:02:23.5 RL: Amazing. So Sam is the older one by minutes then? Okay. Yeah, notice. So Sam's in charge today then?

0:02:32.4 Alex: No.

0:02:35.4 Sam: Not really.

0:02:35.9 Alex: No. I'm in charge. You're in charge actually. Yeah.

0:02:40.6 RL: It could all go wrong from here. So guys, the main reason we're here today is 'cause we're gonna be talking a little bit about disability and education. We're gonna be talking through the process and the experiences that we've had growing up with a disability throughout the education system. So just talking about different experiences, good and bad throughout primary school, secondary school, college and then sort of moving forward, sort of, goals and aims for the future really. So sort of, let's start at the beginning with you guys. I wanna know before we talk about actual school experiences, tell me a little bit about the subjects that you're actually interested in. You mentioned a little bit about media there. Talk me through that.

0:03:34.1 Alex: Yeah. Well, we've had an interest in media for quite a while actually. We've done all sorts of promotional videos for all sorts of charities. And I guess that kind of started it for us when we kind of sensed that we had a kind of dynamic that work on camera. We got interested in, oh, what if we're making our own videos? And it was mainly the lockdown for us. We made our own YouTube channel and we just started making videos and that's when we kind of went, yeah, that's what we wanna do. And since then, we've selected college course that's relevant for that and we're hoping to move it forward in the future.

0:04:19.1 RL: Brilliant. And since sort of starting your college course with this media passion in mind, have you noticed that like your abilities and sort of passion for this has got better? Have the videos got better? That's what I'm trying to say.

0:04:39.4 Alex: Definitely. I think, we were watching a few of them we did, kinda just looking back and we were just cringing. There was a lot of cringing. They're a lot less worse than they used to be, I will say that.

0:04:55.3 Sam: Yeah, they're not as bad as they used to be.

0:05:00.2 Alex: Yeah. They were horrible quality. We didn't have the right equipment then. We filmed it on our phones. Who thinks that's a good idea? We didn't have phones that have very good quality. So, yeah, at first they were pretty bad, but then they've definitely improved in quality and...

0:05:16.5 Sam: The content.

0:05:17.3 Alex: The content.

0:05:17.6 RL: Yeah. I've been following you guys online for a little while now, I saw your recent Who Stole The Biscuits?

0:05:27.6 Sam: Yeah.

0:05:28.0 RL: That was a great one. So obviously media has changed so much over the years, we've seen this rise in TikTok and Instagram and videos. It's all about video content these days, isn't it? How has your video sort of progressed with the time? Are you focusing mainly on videos now more so than other forms of media?

0:05:57.6 Alex: Yeah. I mean, I think like you said, kind of working on all sorts of social media are very popular. And I know that I was complaining about it before, but people record these things on their phones, but it's very easy, anyone can do it, like you said. We like to focus on YouTube videos more than TikToks, I'd say. Yeah. We do the occasional TikTok. We get a random idea and then we can "Hey, let's go outside and film that quickly and post it." Yeah. I'm not sure though. I'd say YouTube we're kind of edging more towards that, 'cause it's a lot more about the filmmaking aspect rather than TikTok which you just get a sound, you put a video over it and it's like 30 seconds. With YouTube videos, there's a longer structure. You have to think about each camera shot, what's in it, what's not in it and what that can be. So we edge more toward YouTube.

0:07:06.8 RL: I know it seems that a lot of disabled people have a passion for media these days, which is fantastic, a lot of that comes down to increased representation within the media, not just in front of the camera, but people who maybe want to work within media behind the scenes as well. Do you think that that has anything to do with media being a bit of a creative escapism? Do you guys enjoy that side of it? Having a disability sometimes you need this creative output in other forms.

0:07:51.5 Sam: Yeah, I think that with filmmaking, we've conquered everything. It's the way of conveying your experiences, your own thoughts or ideas in a way that other people can perceive it, so I guess that's what we do. Most of the time we just have to make it out of ourselves.

0:08:15.3 Alex: Yeah. And I guess we wouldn't really call it escapism... [0:08:19.1] ____. But I think our outlook is very much about accepting we're in wheelchairs, but we're not gonna let it stop us. We don't feel the need to escape because we are okay with our circumstances. However, we do use our circumstances in comedy. Like Sam said, we keep making it out of ourselves and we find it funny, we hope for other people to do, but I wouldn't call it escapism. But it's definitely apparent in our social media and our YouTube channel.

0:09:06.2 RL: Yeah, I think there's no doubt in anyone who comes across your pages, that humor is there, it definitely is, which is great to watch. So I wanna link this back to where it all began. Obviously, we all had to start somewhere with learning these skills, let's talk primary school. So for those sort of watching today who... I know there's different education systems around the world, so within the UK, a primary school, you sort of join primary school at the age of five usually and you're there from sort of age five to around about eleven. Do you guys have positive memories from your primary school experience?

0:09:51.2 Sam: Yeah, we really enjoyed primary school. That was the peak of our school experience. We had quite a few friends at primary school, everything was accessible to us. And I don't think we ever really like complained, I don't know, what if they didn't like me because I'm in a wheelchair. People always used to ask us questions about it but we never really had any self awareness or concern about the fact that we were in wheelchairs. It was so nice to have that innocence.

0:10:30.7 Alex: Yeah, I guess when you're younger, it's very easy to talk to people and ask questions. So I guess that kind of influenced why we fit in quite well in primary school. And yeah, we have quite a lot of friends, we played the same games as them, we didn't feel like we couldn't be involved. So primary school was accessible to us.

0:11:02.4 RL: Brilliant. I think that almost just proves, doesn't it, that where there's so much sort of discrimination and negative attitudes towards people with disabilities in society, it kind of proves that... You said you had such a positive primary school experience, I did as well, these issues weren't coming from the kids within the school, were they? Because these are things that we all later discover in life that it's often the other people in society, the parents that are teaching almost negative attitudes. 'Cause like you said, you had lots of friends in school and you had a good... It wasn't an issue.

0:11:42.3 Alex: Yeah. As much as accessibility is about ramps and doorways, it's also... It starts with people, it starts with whether people can change things, whether it's literally accessing things or whether it's just accepting people who have disabilities for being people.

0:12:08.3 RL: Yeah, I absolutely agree. I think primary school, that's the last thing on people's mind, isn't it, you make friends in the playground, you're just Sam, you're just Alex and that's it and that's the lovely almost innocence of children. In terms of the primary school access and things like that, how was your experience? This is probably more of a question for your family. But finding an actual school that was accessible near your home, was that ever an issue, or?

0:12:47.6 Alex: I think we struggled for a bit and I remember our mom saying that she sat in the headmistress' office and cried because she was so worried about not finding a school for us and that we were gonna end up in a school where the education wasn't prioritized. We just worried that we were gonna end up prioritising accessibility over education, which would mean, yeah, we'll be able to get in the school, but we weren't gonna be able to...

0:13:20.3 Sam: Take lessons from it.

0:13:21.5 Alex: Yeah. We wouldn't take those lessons from it. But when we found the school that we went to, we managed to sort us out. It wasn't local to us, but it was close enough that we could apply for transport. And it was an easy route, we could get there within 10 minutes by car. And once we found the school, it was easy from there and it was just that initial process of finding the school.

0:13:57.1 RL: Yeah. And it's a big change for everyone, isn't it, not just for ourselves finding a school that we feel comfortable but for the parents, like you said. You just said your mom was sat in the office upset there. It's heartbreaking really. But obviously, she would have been so involved in the day-to-day life of you guys, it's almost like... You're finally in the nest, it's a little bit of respite for her as well whilst you guys are off to school. So yeah, no that's really nice.

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0:14:29.3 S1: You've been listening to The Living With SMA podcast. We hope you can join us again next time, but in the meantime, please 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.