20 - Part 3: Disability & Education

Welcome to the Living With SMA Podcast.

In PART 3 of Episode 20 of the #LivingWithSMA Podcast, SMA UK Host Ross Lannon chats to 17 year old twins Sam and Alex about the barriers they faced during their secondary school experience. We also talk about whether school days really are the best days of our lives and the assumption that people with physical disabilities also have learning difficulties.
 
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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.

You can contact SMA UK on the following social media platforms ⬇️⬇️

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

0:01 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 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 to find the podcast useful.

0:00:45.9 Ross: In part three of this episode, we talk about college freedom and change of routine, the assumption that twins like the same things and also life after college and future goals. And moving on from secondary school, obviously that brings us to more so where you guys are now. You say you're in college right now. Sam, tell me a little bit about how that's going so far.

0:01:13.0 Sam: Yeah, it is a lot more fun than in school because now we're doing something that we want to do and we're working towards a career that we have dreamed of for a while. I think we've not... I think we were actually recommended to go into a higher level course, so we weren't really... We haven't really been seeing as the wheelchair... We haven't really been doubted of our abilities, but...

0:01:55.3 Alex: Are you okay?

0:01:56.2 Sam: Yeah, I'm okay.

0:01:57.2 Alex: I think what he means is that we've just... When we applied for our college course, we were... We applied for a level two course, and when they looked at our GCSE grades, they recommended us for a higher course. What you're saying is that we haven't been judged based on our physical disability. It was all via our achievements in education. So we were just as good as everyone else and we are working as hard if not double compared to everyone else to try and get the career that we want just as everyone else is and we're enjoying it probably double I could say, yeah.

0:02:48.9 Ross: Yeah, I think that was a very modest and polite way to say. Just say it. You're better than everyone else. Just say it. [laughter]

0:02:55.8 Alex: They're a little bit lazy. I must say. We've always having a bit of... A lot of motivation with our work. We understand that we have to work to get what we want and yeah. That's what we're doing.

0:03:12.9 Ross: Yeah, and obviously college it's quite a difference compared to secondary school. I think for me, I think the thing that I noticed the most was the relaxation of rules. When you've spent so many years in school, it's very routine based. You have your set times and you've got specific times where you've got specific lessons and homework and everything. Whereas college was I think, I found the biggest shock to my system because it just seemed so much more relaxed. You had this timetable with lots of different gaps in it and you could come and go as you please, and it was a lot less scheduled, which I think I struggled with 'cause I'm quite a routine based person. How did you guys cope with that? Did that work in your favour or did it work against you?

0:04:12.6 Alex: We agree with what you're saying. We're the same. We like routine. So we kind of... We make our own routines. We say, "Right, we're gonna wake up and we are gonna do this work today. We're gonna have it done by the end of the day." So I guess we work as much as we can without the timetable. Sorry. We're just talking on that among ourselves, if it's okay? [laughter]

0:04:46.2 Ross: You're fine.

0:04:46.6 Alex: Yeah.

0:04:47.5 Ross: No, that's... It's a good point and I do agree. I think that the routine, it is a big shock to the system. I know I personally struggled. I never struggled with anxiety up until I started college and then it kind of just came from nowhere and hit me. And I think a lot of that came down to this freedom, which a lot of my peers flourished from. They loved it. But for me that was a real struggle. What about the pandemic? How did that affect your learning? Was it... Did you cope well with... Was it lots of online learning for you?

0:05:30.9 Sam: It was actually better for us. To be fair. Because we pretty much taught ourselves for those final two years. People were loud in our class.

0:05:42.1 Sam: Yeah, people were very disruptive so it was nice to sit back and study how we liked it, watching YouTube videos and Googling things rather than hearing it from the teacher. And we have each other to help understand it. Alex was always the driving force behind, "Come on, we need to study, we need to revise." But it was... It always... It was way easier without everyone else there.

0:06:14.9 Alex: I guess we just had the freedom and we knew what we all can bring, we always did, right?

0:06:18.6 Sam: Yeah, and it just helped us understand things better at our own pace.

0:06:24.9 Ross: Yeah, that's good. There's definitely some positives that have come out of the pandemic. And I think the disabled community have been brilliant at highlighting that that actually, it's not all bad. Some changes have made a positive impact, which I think is good.

0:06:40.8 Alex: Yeah.

0:06:42.8 Ross: I've touched a little bit there on the stresses and anxieties, school and education does bring out a pressure in us. And especially if in today's day and age, at school or college with the rise of social media and things, all this kind of stuff wasn't really an issue in school back in my day. Have you guys noticed any... Have you got any comments on that in regards to social media and education pressures these days?

0:07:20.1 Sam: We try not to put pressure on ourselves because I think that makes it... We get more nervous with it. So we try and relax ourselves as much as we can. I think at first with school, we, well, I struggled a bit in terms of the learning. But then like I said, we worked at our own pace and we managed to improve in areas where we struggled. As for social media, I guess we probably, oh, what was I gonna say? We probably shouldn't a bit more on social media.

0:08:05.2 Alex: Yeah.

0:08:06.8 Sam: It's not everything I think people have to understand it, you definitely also focus on your life first before going to social media. So I guess that's what we find, we try and put our own situation first and then post selfies on Instagram. And yeah it's just... It's better that way when you put your situation first.

0:08:32.8 Alex: Yeah. Keep yourself to yourself unless you want other people could.

0:08:37.8 Ross: Exactly. I think that is the problem now, isn't it? A lot of people are comparing themselves to each other online and that's almost creating this problem in itself of people getting themselves stressed and anxious. And if you are not getting the same grades as Maia down the road, it is a pressure. So moving forward. You're obviously enjoying your college experiences at the moment 'cause you're passionate about your media and things. What's working well about your current setup compared to previous education experiences?

0:09:20.5 Alex: I think one thing that has improved between secondary school and college is our support workers. I think in secondary school, we...

0:09:35.3 Sam: No, no, it was a lot more physical and technical.

0:09:38.3 Alex: Yeah. But like in college we, our support workers, they just kind of let us, they help us where we need it, but they don't... They just let us get on with what we need to do, and...

0:09:54.3 Sam: And it's like having a friend there.

0:09:55.5 Alex: Yeah. It's more of a friend than a teaching assistant or a learning mentor, whatever they're called. I don't think we've ever liked the difference between teacher and student. We don't find it very... We don't like the fact that someone can say, "Go out the class because I said so." It's having, seeing each other as equals is, it's a much more relaxing environment. It's like we come in class and we can all, "Oh, just get on with your project and let me know if you need help," rather than you need to do this, you need to do this. And it's just a more relaxed environment.

0:10:45.5 Ross: Yeah. No, I can see that for sure. And when it comes to having that support as well, that TA support, is really important to touch on that as well. Because that can play such an important role within our education experience. 'Cause having somebody support you for however many years that you're... Five years throughout school. And now you're at college, having that person by your side can play a big part. So it's important to get along with them and for them to know your needs.

0:11:25.3 Alex: Yeah. I think the thing is with college support, it's a lot more natural. Like I said, there's no boundaries, it's not teacher student, it's, we're equals and it's a lot less formal. You don't feel like you're...

0:11:52.0 Sam: Being pushed in a certain direction.

0:11:55.0 Alex: Given the... Especially with our course, you're given the creative freedom, they literally give you a brief, a project brief and say, [0:12:04.5] ____ are based on this and then the rest was up to you. And it's just way easier.

0:12:13.2 Ross: Yeah. No, that's nice. And being twins as well, do you guys ever get annoyed to people let's just assume that you have similar interests? I know you both obviously like your media, but you obviously have different passions as well that you want to pursue at some point.

0:12:33.1 Sam: Yeah. I'm a lot more into football than you are. You are a lot more into, I don't know what you prefer. I think mostly we're the same, but there are some areas where we're different. I think if you spend enough time with us, you can definitely see the differences. For example, you keep talking over me.

0:13:00.3 Alex: I was sorry.

0:13:00.5 Sam: No, no. The more complicated one, but sometimes I just hide in the shadows and just listen to a conversation. We definitely rely on each other for a lot of things like that. And we bounce off each other, like we can right now. But yeah, we are different, but it's not annoying because it's fair for people to assume that we have similar interests, we spend a lot of time together. We...

0:13:37.8 Alex: Have similar experiences.

0:13:39.1 Sam: Yeah. So I get it, I get it. But let's say, if you spend enough time with us, you see the differences and you appreciate our differences and our individuality, I guess.

0:13:56.7 Ross: Yeah. And then moving that forward even more to at life after college, what are your plans, have you got any goals, aspirations moving forward?

0:14:12.3 Sam: Well, we're currently working at the university after our second year at college. And then I'm not sure, we have... Ideally, we both want go into some sort of TV presenting together. I guess as we move forward, opportunities will come up and we'll figure out what we want to do from there, I guess. 'Cause opportunities present themselves and we could get offered something and it could change our lives. So we can't plan too much, but we have a general goal of where we want to be, which is in TV or making videos or skits. But then it might change, you never know.

0:15:13.1 Alex: There's a lot, that is.

0:15:16.7 Ross: Yeah. That's the beauty of it, isn't it? You never know, Ant and Dec, eat your heart out. They've got some competition now with you two. [laughter] Well, I apologise for feeding that 'cause there's nothing worse when you get the same comments from people, but hey, you said you wanted TV presenters, what do you expect? [laughter] And guys, just to end on a positive note, what advice would you give to anybody who is potentially going through a bit of a rough time, maybe their school, they're struggling with access or stress or anything like that? What positive message would you say to somebody to inspire them to keep going?

0:16:12.7 Sam: I guess, there's a light at the end of the tunnel. I'm not going to go into details, but there's been stuff going on with us.

0:16:22.9 Alex: Some personal issues.

0:16:24.1 Sam: Yeah, and we've just had to...

0:16:28.4 Alex: Wait it out and see...

0:16:30.0 Sam: What comes next. I guess everything turns out in the end, you never know, a really bad situation could be a blessing in disguise. You could just fixing our road and it may be a bumpy one, but it you'll end up in a way good place where you need to be. Yeah. And so keep going and everything will turn out eventually. Everything will turn out well.

0:17:02.9 Ross: It will and I think we should just say as well, just because we all have disabilities, we are all bringing something to the table. We have skills as well. So really focus on what your passion is, whether it's media or whether it's something completely different, believe in yourself, have that motivation and belief that just because you have a disability, you still have a skill and you would absolutely contribute to a workplace or university environment. So yeah. Brilliant stuff guys. Thank you so much for joining the podcast there. It's been lovely speaking with you. And yeah, just best of luck with the media. I'll be keeping an eye on your socials and seeing what other little skits you've got coming up.

0:17:55.3 Sam: We'll see if we can sort something out we'll...

0:18:00.1 Ross: Yeah. Brilliant. Well guys, thank you. And best of luck with everything and yeah, that was another episode of the Living with SMA podcast. Big thank you to Sam and Alex. And yeah, we've been talking about disability and education. We'll see you next time.

0:18:19.4 Exit: 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.