Living With SMA

20 - Part 2: Disability & Education

September 22, 2022 Spinal Muscular Atrophy UK (SMA UK)
Living With SMA
20 - Part 2: Disability & Education
Show Notes Transcript Chapter Markers

Welcome to the Living With SMA Podcast.

In PART 2 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.

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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

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.

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.

00:45 Ross: In part two of this episode, we talk about the barriers that Sam and Alex face during their secondary school experience. We also talked about whether school days really are the best days of our lives and the assumption that people with physical disabilities also have learning difficulties.

01:03 Ross: Moving forward to secondary school then, secondary school is usually from the age of 11 to 16. How was your secondary experience?

01:14 Alex: Well, we weren't so lucky with secondary school to be honest, the school that we went to was our fourth choice and unfortunately like Alex said, we had to end up choosing accessibility over the actual quality of the school. Yeah, initially, you know we looked around a couple of schools and the main... The catchment school where all of our friends would of gone and would of been closer to us.  We ended up being blatantly told that they wouldn't be able to do anything to change the accessibility. They, like I said, they blatantly just said that we won't be able to go to that school as... and it kind of... It was hard at first because we... It was gonna be where our friends were gonna go and we were limited then. It made us realise it wasn't gonna be as easy going as primary school was, it was gonna be a lot more difficult.

02:29 Ross:
And what were the main barriers then stopping you from going that school? Was it purely just physical access in terms of step lack of ramps and things like that or what were the main barriers?

02:42 Sam: Well, in the first school it was the bathroom which was an issue. The second school was perfectly accessible, but I think they had too many,

02: 58 Alex: They were under staffed

02:59 Sam: They didn't have the enough people can take care of us.

03:03 Alex: Yeah

03:04 Sam: And the third school, I believe just wasn't big enough. I think that one wasn't close enough. It was either, it was too far away for us to manage to get there on time and then the fourth one, which ended up being our school, they managed to put a bathroom in that we could use, as I think they didn't have that before, I'm fairly certain.

03:32 Sam: And the school was fully accessible. We could get everywhere, there can lift and all the classrooms were accessible and we could apply for transport there.

03:45 Ross: Right. But I mean, that's quite a big thing to go through, especially for young lads that you've got enough going on in life anyway and to have to deal with the stresses of moving schools almost, you know, not being, having that comfort of your friends there as well. Yeah. How did you cope with that?

04:10 Alex: I think at the time, it... We weren't as involved as we would be now. So I think it was more on our mum and how that affected her. I think for us, like we're saying about our friends and everything, that was quite difficult for us at first, 'cause we... How a minute ago we were talking about our primary school experience and how everyone was friendly and we asked questions, we were worrying about the opposite happening and I guess we were just a bit... We didn't really know what we do? We didn't know how to handle older kids now. It is not like it's five year old to ask questions and are nice and happy. It's 11 year olds who are growing and trying to be cool. Yeah, everyone's trying to be cool and popular and you don't really get that by asking questions and being curious and being nice to people in wheelchairs. So it wasn't as easy to make friends in secondary school and even towards the back end we didn't come out with many friends. But, you know it happens, we got the education we needed there.

05:33 Ross: Yeah. And do... Did you guys find it helpful that you had each other to go through this 'cause some people might see it as a blessing that you've got your sibling in the same school with you in the same situation, but others might see it as a bit of a curse. Like, oh, I don't want my brother there. That's embarrassing.

05:52 Sam: Yeah. I think, during the first few years of secondary school, we were in separate classes and we started sort of make friends and then everyone drifted apart and we ended up getting put together and I think that worked out pretty well 'cause I didn't really speak to anyone else in my group and neither did you you.   So we had each other during those final few years during our GCSE's and everything. Which also helped with our studying 'cause we could ask each other for help.

06:34 Alex: Yeah.

06:34 Alex: I think, we never...

06:36 Alex: Like we never did that thing that you say where we were like, oh, I've gotta spend the rest of the day with my brother. We never did that. We were always lucky to have the other one there and whether it was for education or just having a friend there, we were always grateful that we had each other.

06:36 Ross: That's nice. You won't be saying that in a few years. [chuckle]

06:36 Alex: We'll see. We'll see.


06:36 Ross: They always say don't they there's this famous saying where they say the school days are the best days of your life. And probably at some point we've all thought, of I don't believe that at all. When the parents say that you're like stop it, but I do genuinely believe, I hate to say this. It makes me seem older than I feel. I'm nearly double your age now and I do genuinely believe there's some truth in that statement. I look back now on sort of school days myself and I'm just like, 'do you know what, that was a good time', sort of much simpler times, than sort of the working life and the independent life that comes with with paying bills and all that stuff. You guys are obviously closer to your school experience, you've been through it more recently. What are your thoughts on that statement? School days are the best days of your life?

06:36 Alex: I don't think we're quite where you are yet because we don't pay the bills yet. We don't have that responsibility yet, but I guess in a couple of years we'll able answer that part, I think for us secondary school, wasn't the best experience.  We prefer to look back on primary school. We enjoyed it more. We got a good education. Well, we did in secondary school, but primary school is definitely the peak of our school experience and you know, we might be able to answer your question in a couple of years when we have all those boring responsibilities but for now I'd say I'm not quite sure yet.

06:36 Ross: Yeah. No That's fair enough. And do you guys ever get frustrated because people often make an assumption don't they, when it comes to education and disability, that just because you might have a physical disability and be a wheelchair user that you may also have learning difficulties, which is not always the case. Yes. In some cases it is, but does that assumption annoy you? Have you ever been in a situation where you've been put in a specific group with other people based on your physical disability? 'Cause they've assumed that you have learning difficulties too?

06:36 Alex: Well, me and Sam have always been, not gonna brag, but we've always been higher up than quite a lot of the people in our year. We were both in  top set throughout our school. So I guess people understood that it was physical, not, you know it wasn't a learning difficulty and even though we struggle to write sometimes we don't.. it doesn't impact our learning. We still learn just as well as anyone else. So, you know we never really got put in different groups because of that. We were always doing as well as we could revising for tests and trying to get the best grades possible.

06:36 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

Secondary school experience
What were the main barriers stopping you from going to that school?
Coping with the move to secondary school
Was it helpful having each other in the same school going through a similar experience?
School days are the best day of your life?
The assumption that people with a physical disability also have a learning disability