21 - Part 1: Higher Education, University & the transition into employment

Welcome to the Living With SMA Podcast.

In PART 1️⃣ of Episode 21 of the #LivingWithSMA Podcast, SMA UK Host Ross Lannon talks to Mia Myers and Steven Jones about the university experience. They also look at whether having a disability makes you look at things differently when exploring higher education and they talk about accessibility and fighting for justice.

Watch this episode on our YouTube channel here.

Ross, Mia and Steven all come from different angles.  Mia is currently at University, Steven has graduated from University and in employment and Ross did not go to university, but is doing also in employment and doing a career he loves.

The aim of today's podcast is to share the experiences of Ross, Mia and Steven and to show that regardless of your disability, interests and education, you can still get to where we want to be!

#LivingWithSMA  #SMAUK #SMA #SpinalMuscularAtrophy

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_
facebook.com/SpinalMuscularAtrophyUK/
instagram.com/sma_uk

If you do have any questions for Ross, Mia, Steven and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk

Living With SMA-'Higher Education, University & the transition into employment' 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

0:00:01.6 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 from 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 that you find the podcast useful.

0:00:46.0 In part one, we'll be talking about the university experience. We'll be looking at whether disability makes you look at things differently when exploring higher education and we'll also be talking about accessibility and fighting for justice.

0:01:00.6 Hello everybody and welcome back to a brand new episode of the Living With SMA Podcast. You are joining us today and we're gonna be talking about a brand new topic today, which is... There's another interesting one as always, we're gonna be talking about higher education and sharing our experiences of higher education university and the transition into employment and a career within the big bad world of working. So before we dive into that topic, I wanna introduce my guests to you today. We... The three of us are no strangers to the podcast. I'm sure you've seen us all, pop up here and there in the past. So if I kick things off with myself, my name is Ross Lannon, I'm a lifestyle and disability blogger. I'm 29 years old and I'm from Cornwall and I have SMA myself. So I'm gonna hand over now to Mia if you'd like to introduce yourself.

0:02:05.0 Sure. So I'm Mia Myers. I've just turned 20, so I'm still at uni. I'm just about to go into my third and final year studying psychological and behavioral sciences at Cambridge. And yet I have SMA type 3 and I'm currently trying to figure out what to do with my life, I guess.

[chuckle]

0:02:26.6 And Steven.

0:02:30.5 Thank you Ross. So, hi everyone. My name is Steven Jones. I'm currently working for the civil service in HMRC. I'm also 29 and I've got SMA type 3.

0:02:41.8 Fantastic. I feel like I'm the only one who actually didn't mention where I worked, so I should talk on the rest already. I work for CHAOS TV as a radio host. So the point of today's podcast is we're gonna be talking about... We will be showing different aspects I think, and this is what's exciting about higher education and employment because the three of us come from three different angles here. So we've obviously got, Mia who is still in higher education. I believe you've got another year or so to go. Is that right?

0:03:19.4 Yeah. One more. [chuckle]

0:03:21.6  Yeah. Okay. And then you've got, Steven, yourself, you have gone through university and you are in a paid employment role now.

0:03:33.7  Mm-hmm.

0:03:34.4  And also we've got myself who, I actually didn't go to university. I didn't have any sort of higher education, but I am too am now in a paid employment in a job role that I'm really passionate about and I enjoy it. So I think the aim of today's podcast is to... For all of us to share our experiences and just show that regardless of our disabilities, interests and education, we can still get to where we want to be. So let's kick it right back to the start and let's talk about, your guys' university experience. So Mia, if you can kick us off and tell us a little bit about your thoughts and feelings towards leaving college and making that decision that you wanted to go to university.

0:04:28.2  Yeah. Well, university was something that I always knew I wanted to do. I always enjoyed studying and I wanted the university experience. I wanted the independence that comes with that, but I honestly didn't think I'd be able to do it, which now feels like something maybe not so thought through to say. But I remember I was 16 and I sent a very stressed email to SMA UK and said, "I want to go to uni, but I don't think I can. Can someone talked to me?" And then I got put in touch with some lovely people that basically told me to chill out and gave me some tips. And yeah. And then I was able to go look around unis and I knew what questions to ask. And I think also negotiating budgets and sorting out PAs was something that scared me. And so that was a big thing to come to terms with. But yeah, I'm really happy that I made the decision and now I've nearly done it, so there you go.

0:05:31.2  Yeah. Mia, what was it about going to uni? You said you had those fears and you emailed SMA UK. Like in that email, what was you so worried about?

0:05:43.4  I think it was mostly the PA side of things because I'd never really had a good PA experience and in my mind I decided to make the compromise, which I didn't do in the end, but to stay at home with the support that I knew worked for me rather than what felt like take a massive risk and go to uni and have new people that I needed to trust. All of a sudden that just felt very scary to me.

0:06:17.6  Yeah. And Steven, you sort of nodded your head as Mia was speaking there. Is that a similar situation for you? What was going through your head when you were making a decision of whether to go to university or not?

0:06:30.2  Yeah, no, it's a really interesting point. I think when I was looking to go, and I can't believe it's 10 years ago since I started at university, it was really old. But I always wanted to go and I think part of me was thinking, it might be easier for me to get a job if I've got a degree and a disability, which is a real, like, we shouldn't really be thinking that. But I think that's just a bit of a reflection on society sometimes. And it's still really challenging for... Say people to get jobs. I mean, it's improving a lot as well. So I think I always thought, yes, I want to go. And I was just reflecting on Mia's point as well about logistics and organizing things and all of that. And I've never really been away from home for a long period of time.

0:07:19.4  And I think you've almost got that extra layer of, okay, so I want to do this course, but actually where am I gonna live? What's all these other logistical areas? Am I gonna take my car with me? Or what support do I need and how much is it gonna cost me? Like in addition to like everyone else? So I think it's a lot more of a sort of thinking through and actually what does this mean for me and what does this mean for my life? And an element of it is a bit... Actually, is it just easier to not go and which is a really bad thing to think about, but I think it sort of went through my head actually, Do I want to live out? Do I want to stay? And it was quite... There were big questions for anyone, but I think with a disability as well, there's sort of extra lens of complexity in that space.

0:08:07.6  Yeah, and I think the interesting thing that's coming from this, from the three of us as well, is that I think we can all agree that having a disability ourselves, we look at things differently to maybe our more able bodied peers. When they maybe are making a decision of going to uni, it's probably more based on the location they're gonna be or what course they want to study. Whereas when you have a disability, I think we have to sort of think about a lot more intense issues that are gonna affect our life more majorly. Is that a fair point you agree with?

0:08:46.1  Yeah, yeah. I think so. 'Cause I think... I mean, when I was looking at universities, so I was really fortunate that my parents weren't with me to look at universities before I keep it in my options and even going round. So I went to... One, to visit and it was really hilly and I was actually thinking, this has just put me off. Because if I'm coming out... What's at that? At the library, or it's been raining. Or if the car park is really far away, that will instantly make me think, well that will take me like 20 minutes to do that. What if I'm late? And all of that. And it's that extra worry, a little bit of it. So there's small things which I certainly notice, which won't really impact others but impacts me. And I think that's probably the same to lots of disabled people.

0:09:33.4  Yeah. And I think, Steven, you made a really good point a minute ago when you mentioned about whether you felt you had to go to university to get like a degree or a qualification, 'cause that will help you with a future job. Do you think that comes with the stigma of having a disability that if you didn't have that degree, you'd have an even lesser chance of getting a job? Because we know as individuals with disabilities, it's already a little bit harder than most to gain employment.

0:10:03.8  I mean, I think so, and I think lots of it was probably around the age of 16 when lots of my friends were sort of getting part time jobs in shops, supermarkets, everything like that. And that was really challenging for me to get that because I think at that age in that terms of employment then it is mostly those physical, potentially manual jobs. So I think because I found that quite challenging, sort of not being able to sort of get employment, then I was thinking, what would it be like at 18 after I've been to sixth form, so it definitely was a factor.

0:10:40.9  Yeah. And as myself, as someone who decided not to go to university, I... It wasn't a flat out easy decision. I myself also did some research and went and visited a couple of places. And again, it comes back to one thing... One of the main things for me was I didn't really know what course I wanted to do and I was like, I could just go and do any course for the sake of it. Because all my friends are going off and that's what's seen as the norm. Or and the next big issue, which Mia and you touched on was the issue with PAs or care. Talk me through a little bit more Mia if you can, about how you managed to overcome that fear of wanting to go to uni, but also being concerned about your care needs.

0:11:34.4  The main thing is probably with choosing unis, the only proper restriction I put on myself was I wasn't gonna apply to a uni further than three hours drive from my home in case something went wrong. Because my issue with PAs at sixth form was that they were just very unreliable and I got through a lot and they just wouldn't turn up or they'd leave. And so I wanted to know that if I was in that situation at uni, what would I do? And that would be, I would come home, get on the train, or someone from my family could come and help me out. So I think that really helped. I think also my... Personally, my determination to go to uni kind of overrode that fear a little bit. So then it felt worth it to push through that even though it was a bit terrifying. [laughter]

0:12:30.4  What a decision to make as well. And Steven, similar question to yourself, what were your thoughts in terms of PAs in care when it comes to almost moving away from home?

0:12:43.3  Yeah, so I'm actually... I don't actually have any care at the moment and I didn't have at uni as well. So I think the big things for me was I was able to take my car and then what facilities were there which enabled me to live in complete... Without any assistance in lots of ways. And so I think shopping was a real big consideration as well and like how am I gonna do that, and like sort of manage that by doing it in sort of small quantities instead of doing a sort of big shop which I think is quite common when all are at university as well. But I think the key thing is my home was 40 minutes drive away. So even though I lived there or... Well, if I needed to pop home and sort of get some assistance doing something or anything like that, that was really readily available and 'cause I took my car and it was really easy to access and all of that. That really helped in that way and I was able to sort of manage that. I think if I'd lived any further away that might have become a bit of an issue 'cause I could like to pop home within a day and come back sort of thing. So it was quite easy in that sense.

0:13:53.9  Yeah, I think travel again is another issue that we have to consider because we're not just talking about not wanting to be away from home because we're gonna miss our friends and families. We're thinking from a medical point of view as well, and from a safety point of view, we can't afford to be too far from home because you never know what help you will need. I think it's an important thing to touch on. So we've talked about the decisions and the thought processes into choosing the right uni. Let's actually talk about your time at uni. So Mia let's start with you 'cause you're in the thick of it now. You are living and breathing it as we speak. What has your overall uni experience been like in terms of accessibility?

0:14:47.1  It might probably been a bit different from lots of people because I was a COVID fresher. So I was in my first year in 2020 which was a decision that I had to make at the time whether I would defer but I decided not to in the end. So my uni experience is definitely not necessarily been what I expected it to be, however, I think because of my vulnerability to COVID which I'm sure lots of people can relate to, I had to really think through before I went to uni how my experience would look and how it would be different and I have to come to terms with that.

0:15:28.3  But... And I've really enjoyed it even though first year I was at uni for a term and then I came home when there was a lockdown so we were doing it all online everything was remote. Then in second year, I was there the whole time, literally barely left. I had to try and make up for it. And mostly accessibility has been okay. When people ask me this, I say that, well, my uni town and my uni was definitely not designed with access needs in mind at all. And that's just something that I think you need to keep perspective on because it's only one town in the whole of the world, and there are many other places. And so I think coming to terms with that has helped. The main issue that I had was at the beginning of my second year I was doing a paper that I'd chosen that wasn't from the psychology department, so it wasn't... They didn't necessarily have all the information they should have had about me.

0:16:28.4  And I kind of had that moral dilemma where I thought I should check access but I don't think I should, so I don't want to but I feel like it's probably a good idea if I do. And then I caved at the end and emailed them and basically said, "I'm sure you've already thought about this". Well, they haven't thought about it and it was in an inaccessible venue which is annoying, but okay, we can deal with that. But then it was the way that they responded to it really annoyed me because they said, "We'll look into what we can do but no promises. We are live streaming lectures for people who have COVID so you can watch those." And I was fuming, I was so angry. I wrote a very long, very assertive email. I quoted at them their legal codes of practice which they'd updated two weeks before and I attached it to the email for their attention.

0:17:24.9  And I attached my student support document which outlines all the needs that we have that says wheelchair access is needed. And then I copied in the director of my degree, the director of the Disability Centre, the director of the department where the lectures were, the people running the lectures, my tutor, my director of studies, basically loads of people and got me sending this very assertive email to them. And then they got stressed 'cause I told them I'd take legal action if I needed to. I obviously was terrified writing this, didn't wanna do it but I was just so annoyed. And then they moved the lectures. And now they're scared of me so things are accessible. So that's my advice to people. [chuckle]

0:18:12.3  That is incredible. And firstly, can you come and sort my life out because I feel like we all need a Mia in our lives. But it's amazing how... Obviously, you said like sending that email or putting that together they obviously lit a fire in your belly. You must feel so proud of yourself afterwards, do like affecting that change because not only are you gonna obviously benefit from that, but future people as well are gonna obviously benefit as well.

0:18:46.3  Yeah. I think at the time, I was just so frustrated and it felt like a very vulnerable place to put myself in sending that email because I was talking logistically, but also I was saying how it was affecting me emotionally, not in an over-dramatic way, but just to the point. Because I felt people needed to know, and it honestly surprised me the impact that it has. Yeah, a few weeks after I was still a bit tired and still had a bit of adrenaline because it was just such a big deal considering I'd barely been at uni physically for the first year. And then the first interactions I have with the heads of my degree and department and all of that was me basically saying, "I'm not being unreasonable, but you need to sort this out," and they did. And then actually they took it up through to the directors of the university. And then they've changed how lecture halls are booked. So now if there's someone in a wheelchair in your class, then they don't let you book a lecture hall that is not accessible. So that's good, at least.

0:20:01.0  Fantastic. Yeah, it's a brilliant story because it has this almost happy ending to it. But I can imagine how annoyed you must have been because again, it's almost like treating people with disabilities as like a second-class citizen just, "We run the classes online. We're not saying you can't do it." That's not an option, because that's ultimately taken away from your university experience.

0:20:28.6  No. I agree definitely. It was just the implication that it wouldn't matter to me. And It did, so I told them. [chuckle]

0:20:39.9  Good for you. And Steven, and that's gonna be a hard story to top on, but have you had any sort of stand-out moments from your uni experience that you've really had to fight for sort of like a justice as such?

0:20:56.1  Yeah, it's interesting. I was reflecting on that story, 'cause as I had similar instances happened when I was at uni but I didn't fight as hard for them which maybe I should have done in some ways. And it's interesting because when I was at university, there was no... Lectures weren't recorded. There was no live streaming or anything like that. And I think they just started recording lectures when I left in, I think 2015 now, as well. So it was almost like if you didn't go to a lecture you missed it, and that was it. And I did find the whole lecture halls very... Were quite designed really badly in lots of ways. Because you had to also sit right at the front and you couldn't sit back with anyone or sort of integrate fully. So I think firstly, they were sort of designed in quite a strange and excluding way in lots of ways. And I remember once they did sort of rearrange one of my rooms that I was meant to be in. At really short notice, I think it's just double-booked they hadn't realized. And they went...

0:22:03.7  They sort of said, "Oh, we've got this room." And they sort of took me to the lift... Went up into the lift, sort of onto the second floor. And then there was a two steps to get into the room. So I was thinking, "What's happened to you, you sort of like half solved it. Why put a lift and all of that is right at the end." So in the end I missed my lecture. But then again, my lecturer did have a session with me later on just to talk me through. But still it's more of... Actually, I was excluded from taking part in that. But I did a year out. I did replacement year and when I came back, my university had a brand new building. And that was being built in the first two years when I was there. And that really made all of a difference because it was really big, it was really modern, it was fully accessible. Well, accessible for me, it might not be fully accessible for everyone else.

0:22:58.7  And I found that really, really uniting. It sort of changed my university experience, 'cause lots of those blockers in terms of me thinking, "How do I get to the room? Would I be able to get in there? How big is the room?" All of those things, they were in my head which is sort of removed because I just knew it was all accessible. And as well, the library was an interesting one as well because online, they had a new system where you just reserve books, which isn't a big thing, every library does that. And then you sort of just go and you pick them up. But in the previous library, it was very much you just went in and explored. And sort of you could ask for books if you knew what you were looking for, but this was such a good way to sort of remove the barrier of me looking around and other things. A couple of challenges there.

0:23:47.6  Yeah. And I think it's important to touch on as well. When it comes to the uni experience in general, what may work well for one person may not always work well for another. So in Mia's situation, for example, she obviously didn't want to do the whole online learning. You wanted it to be... Have that uni experience of being in the classroom with your colleagues. But a lot of people maybe who maybe would prefer to do the online versions or they might have some anxieties or disabilities that for their own choice would prefer them to be at home. I know from my own personal experience during lockdown, I did an online journalism course. And it's the first time I've ever done online learning.

0:24:41.8  And I... To gain a qualification from that, I was really proud of myself because I thought I really didn't want to go back into education. I think once I had finished my college experience, because I didn't have the best college experience, it almost frightened me towards further education that I was like, "Right, I need to get out of education now. I'm gonna start getting some work experience and looking for employment." Which I did, but then during lockdown and obviously, COVID times that affected employment. I thought maybe I will go back to a bit of education, and that's what I did. But I went down the online learning route and that worked really well for me. So I think it's just important that everyone... I don't know if you agree, Mia. Everyone is different. And that's something that we should be championing.

0:25:36.3  No, I definitely agree. But I also think it's important that everybody has the option to choose. So if that works for you then that's completely fine. But in my case, these lectures that I was fighting for, I could have watched online. They were Monday, 9:00 AMs, two hours first thing on a Monday. So that just shows the point that I wanted to prove that I'll put myself through that, 'cause then I had to go every week. Because I changed the whole lecture venue. But it was the fact that then, like my peers, I could make that decision for myself. It wasn't made for me. And that was what was important to me.

0:26:14.9  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.