The Disability Download

University challenge - how has the pandemic impacted disabled students?

Episode Summary

We’ve got a university challenge this month. It’s a year since Lockdown 1.0, so we speak to disabled student Cassie and network director of Disabled Students UK Amelia about their experiences over the last twelve months. We also discuss a lot of the barriers they’ve faced in their studies long before the pandemic began and question what could, or should, come next to make universities more inclusive. Some people may find the discussions around the impact of the pandemic on disabled people triggering. Music: Sun Shine by Cymatix provided by Premiumbeat.

Episode Notes

We reached out to London School of Economics and Durham University for their response to some of the topics raised in this episode.

A Durham University spokesperson said:

“During her time at Durham University we worked with Amelia, both as a student, and in her role as a Sabbatical Officer for Durham Students’ Union, to understand and seek to address concerns that she raised. 

Whilst respecting the experiences that Amelia has discussed, we are resolute that inclusivity is at the heart of our University and we are proud of the progress we have made. 

We are deeply committed to ensuring that all our students have the best possible experience during their time at Durham and believe our high student retention rate, including those with disabilities, demonstrates this.

Nearly 20 per cent of our student body disclose a disability and staff across the University work hard to help ensure that adjustments are put in place to facilitate their engagement with academic studies and the wider student experience. 

We have made, and continue to make, significant investments in our estate to improve access for all students, adopting high accessibility standards when designing both new buildings and the refurbishment of existing buildings. 

We established an Access Review Team which incorporates students, disability support staff and estates staff who review and identify local infrastructure projects that make our campus more accessible for disabled students, staff and visitors. 

Our dedicated Disability Support service provides information, advice and guidance to support prospective and current students with a wide range of disabilities, and to staff working with disabled students.

Most recently they have launched an interactive toolkit to help those with autism make a confident start at University and joined forces with a range of partners to establish a number of fully funded internships, with tailored support, for students and graduates with autism. 

We have also made funding available to help students secure full diagnostic assessments for Dyslexia or Dyspraxia.”

More information on Durham University’s Disability Support service can be found at www.dur.ac.uk/disability.support

An LSE spokesperson said:

“We are grateful to Cassie for sharing her experiences. Clearly there is more for the School to do in terms of accessibility and support for our disabled students, which we will raise with our colleagues. We are heartened to hear what has worked well over the past year and will seek to build on this as we learn from our handling of the pandemic.” 

Follow Disabled Students UK on Twitter: @ChangeDisabled

Visit Disabled Students UK's website: https://disabledstudents.co.uk/

Read the Disabled Students UK Covid-19 report: https://disabledstudents.co.uk/DSUK_Report_Update.pdf

Follow Cassie on Twitter and Instagram: @soapsub

Visit the Leonard Cheshire website: https://www.leonardcheshire.org/ 

Follow Leonard Cheshire on Twitter and Instagram: @LeonardCheshire 

Get in touch with us: disabilitydownload@leonardcheshire.org

 

Episode Transcription

Cassandra Lovelock (Cassie): So much of your value is based on what you can contribute and you have to work so much harder to contribute anything, because that's how society views disability.

Amelia McLoughlan: Them bringing in lecture capture and online learning and all these things are really positive. However, like it's also been really frustrating that, like disabled students and disabled activists have literally been calling for this like the last 30 years and institutions have always said that's impossible. We can't do that.

Erin O’Reilly: Hello and welcome to the Disability Download. The Disability Download is brought to you by pan-disability charity Leonard Cheshire. I'm Erin O'Reilly and on this podcast we respond to current topics, share stories and open up conversations about disability.

Hi everyone and thanks so much for tuning in to another episode of the disability download. So it's coming up to a year now that I've been working from home throughout the pandemic, which I'm sure rings true to a lot of people as well. And you know, kind of reflecting on the last year, we know that the pandemic has affected so many elements of our lives and we've had to adapt in many different ways, especially as the year’s go on, timeframes have changed and we're looking forward to what's what's coming next as well. But one area that's really, really been affected by the pandemic is education. And we know that schools going back has been a really hot topic, especially this month. But for this episode we're actually going to shift the focus to university students. 

So the university experience has really, really been altered by the pandemic. You know, many students have been doing distance learning or some have been locked down in their halls. You know, not with not much information about what's going on and what the academic year was going to look like. So for this episode, my colleague Claire catches up with Cassie and Amelia. We reflect on their experiences as disabled students in lockdown, how things change for them, the impact of the pandemic in general, and kind of what they hope for in terms of the support for disabled students in the future.

Just as a warning as well, some of the conversations around the pandemic and its impact on disabled people could be quite triggering. So now let's go over to Claire.

Claire Farrell: Hi, I'm Claire and I'm here with two students today, Cassie and Amelia and we're gonna be talking about being a student during lockdown and in the spirit of lockdown, we are not actually together today we are all recording from different locations, so you might be able to hear that in the sound quality.

To kick us off Amelia and Cassie, do you mind introducing yourselves and telling us where you're at in your academic life at the moment?

Amelia: So I'm Amelia McLoughlan. I'm the network director at Disabled Students UK and I was formerly well until about July studying a Masters in Paleopathology at Durham University.

Cassie: I'm Cassandra Lovelock. I go by Cassie I’m a second year PhD student at the London School of Economics. So I'm a student in mental health policy.

Claire: Lovely and thanks for joining us today. I think the best way to get started might be if we go back to the beginning of 2020 when the pandemic kicked off and if you could share what was going on then for you as students and how that all changed.

Amelia: I was actually doing my dissertation pretty much at the time at the onset of the pandemic and it became very obvious to me as someone studying Paleopathology that really you have to be in a lab you have to be looking at artefacts or in our case at human remains, and for that I need to do field work and I needed to go to like different sources of information. So I’d kind of planned this for about 8 1/2 months at this point at the onset of the pandemic and I started to realize that there was no like, there was no avenue for me to be able to do that kind of work for my dissertation.

And I think for me as a disabled student that has cerebral palsy, ME and a couple of other conditions, I was seeing things at work and in the national media around disabled people being targeted, disabled people, kind of dying or contracting the virus at an increased rate.

And so all of that stress plus the kind of realisation that I was probably not going to be able to complete my Masters degree while being at work in a kind of brilliant, but also quite stressful job where I was looking at all of these things, kind of 24/7 really had quite a profound impact. 

And I remember I think it was around February through my kind of Twitter contacts and people that I knew there was a kind of memo going around for the NHS of how if you are above like a point 8 on their scale, you would potentially not be given treatment if you came into the hospital with Covid.

And looking at those criteria was basically how disabled you were. And I looked at that criteria and I saw that I was depending on how my disabilities were viewed by the emerging doctor I was between like four and seven. So to have the realization that if I got this infection, there's a very high chance that I would not be treated in the current kind of climate. 

And obviously I was about 600 miles away from home as well. So obviously I was getting calls from home being like how are you doing? Like, what’s happening on campus?

Yes, I think it was just a very much an amplified kind of feeling of all the stuff I think I had been aware of as a disabled person, but it kind of became a very much like imminent threat. If I can put it that way.

And then of course my kind of whole academic future that I had planned out for like years and years  obviously had to change quite dramatically in that time as well.

Claire: Wow, thank you for sharing that with us Amelia, that does sound absolutely a very, very heavy mix.

Cassie, can you take us back to March last year and where you were academically and how that transition went for you?

Cassie: Yeah, beginning of the pandemic, March last year, I was working towards my first year upgrade in my PhD where you just sort of do a presentation, pass an exam, that sort of thing.

I was at my parents’ house and they live in rural Wales when the lockdown was announced. And I was meant to be going home the next day. So I was stuck at my parents’ house for the duration of the first lockdown, miles away from any of my university and my support system and my carers and things along those lines. So that was very stressful. 

I received a DNR in the post to my address at London. And my landlady opened it and then sent me a photo like you've received this; you should probably call someone. Then I had to ring my GP surgery to ask why they signed this do not resuscitate order for me based on what I thought was not a lot of information. I had to call them and ask, and I when I asked him about it they essentially went: oh well, looking at your record looking at all these things you do, you’re a PhD student, you work in this and this and that. This is clearly been done wrong, so we'll take you off the list. 

And I was like that's great. But why was it done in the first place? Why did you not think to check? All these things and it was a really, really awful situation where I just sort of had this judgment, just put up on how my life must be like, how awful must my quality of life be, based on my medical records as opposed to the rest of my life, just done by my doctors. 

And then the speed and ease they were able to remove it the moment they saw that to some degree I contributed to society, I guess 'cause of my career trajectory. 

It was really, really stressful and really lonely, and I didn't really have anyone to talk about it with. Cause I didn't wanna discuss it with my parents 'cause they’re my parents I don't wanna talk about it with my friends or anything like that. It was really sort of odd, but it meant that I had to be so careful about trying not to get Covid and shielding, kind of not to get Covid and everything. 

Because, yes, they taken this thing away, but they put it on me so easily that that fear is now always there. But it's like, but if I get sick, will be treat me? 

And I've been vaccinated now and that's great. I've had my first dose but that fear sort of stems beyond Covid and into dare I say the next pandemic or something else. And suddenly that fear is now here. And it's perpetually here all the time. And that's been one of the biggest learning points, and it was a really big part that affected my studies, 'cause I just couldn't work. I couldn't concentrate. I had all this like, all my value just deducted down to this one, two, three whatever diagnosis I have. 

I just couldn't study, and I went to my department who went: “that sounds really awful, but there's nothing we can do”. And it's like yeah, well, no one can really do anything in this scenario.

So like mentally at the beginning of the pandemic I was in this just really horrible place trying to figure out if I should even keep working on my PhD, 'cause what if I do get Covid and it just, spirals.

Amelia: I think it's really interesting 'cause there is this kind of phenomena of disabled students in particular being very high achieving for the most part because of that value as humans is feeling very much on what we can achieve and what we can contribute. Because our identity as a disabled person is so undervalued that like a lot of disabled students will literally make their health conditions worse, will do anything they can do to be successful, because it's not just about having a degree at the end of the day, it's actually about being seen as that productive human.

Cassie: Umm (agreement noise)

Amelia: Which is kind of integral to our entire kind of survival within society. And I know that sounds a bit dramatic, but when you're in a pandemic and one of the only things that is keeping you from people you know giving, you do not resuscitate orders, is the fact that you are doing postgraduate study or you are studying and you are high achieving which puts like huge amount of pressure on you as a student and I'd be interested what like Cassie has to comment on this and if I got any of that correct?

Cassie: No it's absolutely true, and I completely agree. Well, like for me, I'm mixed race already, so I feel like I have to work. My mom always had this expression that you have to work twice as hard to get half as far cause racism.

And then being disabled, I always felt like I had to work four times as hard to even get a seat at whatever table I'm sat at, and the pandemic really pushed that where I have to work so much harder than my able bodied equivalents in my studies and be disabled. Or and be ill.

Like there's not, that second bit isn't an option, which I think a lot of universities seem to think it is. 'Cause when you ask for help they always go oh, if you can't cope then maybe you should take a leave of absence, have an interruption and I don't think they really understand that there isn't, for me anyway, an end to my disability. Like I could take a break from my studies and then the only thing I'd be doing would be being ill. But once that break ended I would still be being ill. And I'd just be studying again.

And I think, really, the pandemic really sort of pushed that idea, that so much of your value is based on what you can contribute and you have to work so much harder to contribute anything, because that's how society views disability. Also, for me anyway, my disability makes me very tired and makes a lot of things really hard to do that I have to work so much harder than my counterparts. But we're sort of graded on this exact same scale, which, especially in universities, isn't flexible. And you think the pandemic would have made that more flexible and for me it seems it's made it more flexible for non disabled students, but not disabled students. So.

Claire: And that sort of leads me to the next thing I wanted to start talking to you about, which is now we are much further on, almost a year on, in the pandemic, in terms of the practical things that your places of study have done and what they maybe could have done but haven't, how are you finding things and what, what do you want to see that you aren't seeing maybe?

Amelia: I think that higher education institutions are still kind of trying to get back to what was happening like last year and trying to return some kind of like normality. Which at this point I find slightly ridiculous.

Cassie (Laughs)

Amelia: Because even if we do magically returned to normal, the problems that existed for disabled students in particular are still there and still quite systematic.

Honestly, I think there has been moves to kind of put things online and for some disabled students that made things more accessible. But I think the complete change of environment has actually kind of brought up a lot more issues that like would not have existed if we weren’t in this pandemic. And I think institutions and individuals are still kind of really struggling with that still.

Like for example at Disabled Students UK we've heard about policies around exams where instead of disabled students getting reasonable adjustments in terms of extra time, they're giving all students like a 24 hour time slot, which means everyone gets the quote unquote same amount of time which they’re kind of saying is more inclusive and more universal, but unfortunately doesn't actually take into account where they have disabled students where you know their requirement is a lot different to people that are not disabled. And by just giving that kind of blanket universal policy is actually not that helpful in a lot of cases.

So I think they're trying to, from an institutional point of view, a lot of institutions are trying to get back to this normal and trying to make things as easy as possible on an institutional level, but those institutions were never kind of created with like disabled people present or there in the first place.

Claire: Cassie, kind of what's your take on that, as, I know, someone who's still studying at the moment, how does that chime in with your experience right now?

Cassie: Yeah, I find the emphasis on going back to normal somewhat uncomfortable and maybe a bit naïve of a lot of universities. Because I feel like a lot of things that they have put in place work really well for a lot of students. I know LSE has an incredibly international population. Most of the student body are international students, and they've been able to go back to home and work from there. And that's been really great for them I think.

What universities need to be doing is focusing more on how they can make their online content any good. Cause we can see, especially in like lectures I sit in, and seminars I sit in, you can see academics that have done online content and online culture versus academics that haven't, and it's so obvious to tell and so sort of awkward when academics really struggle with it. 

It feels like sort of a shame that especially a lot of Master students who had their whole year has gone to this. 

Claire: Yeah.

Cassie: They have never met other members of their student body. Things like that.

But for me personally, I think a lot of the things the university of put in place in terms of studies and like socials have been quite good. Cause I use a wheelchair and the room that the majority of my lectures in actually isn't accessible so I didn't go to very many. And I've asked them about this and nothing is really come of it. And in the same way like my office building isn't accessible 'cause there’s stairs into it and I don't spend a lot of time on campus, so I don't spend a lot of time with any of my course mates.

So I think in that way the virtual learning has been quite good for me to actually get to know people on my course, get to know their projects, get to know what they're studying, how I can play a role in that. Cause PhD's are inherently quite a lonely experience, and especially at the moment universities are really pushing to get us to be friends and talk to each other and support each other. And I think that is quite nice.

And I think on the flip side, from the academic is like the social side and for me a lot of socials, a lot of people at LSE have a lot of money so socials were always like really expensive and the things they want to do. And I've never not want them to do that if it's in their budget, that's great.

But as we know, being disabled comes with its own incredibly expensive tax, especially in London. And I could never afford to go on any of these socials or anything like that, so it's been quite nice to be able to have some level of social interaction with my course mates, even if that's been facilitated by my university just via zoom, 'cause I've never really had that.

So for me, a lot of the virtual world has worked quite well but I appreciate for most people it doesn't. Cause people really like routine and it's really brought forward sort of the people you know and your colleagues who don't necessarily value disabled lives. 

Like there was a really big push among people at my university to go back to campus. And I was like what are you doing? That’s so dangerous. Like, stay at home. But they really wanted that structure and it was always really uncomfortable and I'll never forget all of these people which really wanted that structure and wanted their lives back more than they it was perceived, cared for, lives like mine. Who, if I got Covid I wouldn't be treated and I'd stayed at home for the last year, but if they got covered they'd be treated even if they'd been broken the rules or been sort of irrational kind of thing and it really was hammered home that it was just so unfair.

Claire: That sounds really hard Cassie and thank you for describing it for us, because unfortunately I think a lot of our listeners will be able to relate. So thank you for helping to draw attention to what that's like and how it actually makes people feel.

And then looking forward to the future when the pandemic’s done, or at least lockdown is done and some measures start to change. What things do you want the university that you're at to do? Or universities in general to do, to make learning more accessible? And that could be in terms of virtual learning or in terms of things they need to do with actual buildings and how staff relate to students?

 

Cassie: Mmm that is a good question. Obviously, like the first point is just buildings that I can get into. And electric doors. This sort of thing. I think as my university is in very central London and they take a lot of pride in being in old buildings and things like that and old buildings are pretty, but I can't get in any of them. So fixing that would be a great place to start.

I think in terms of things like lecture capture along those lines. That would be quite helpful. I remember in my undergrad we had a big hurrah with the university about doing lecture capture, especially for disabled students, and they always had this idea that it would decrease attendance. I always thought that was a bit ridiculous because for me as a student, if I was able to go to things I would go to them in a heartbeat, but I wasn't, but they always had this idea that making this lecture accessible to disabled students would make able bodied students lazy and therefore decided to punish the disabled students. Which never seemed to make any sense to me.

But things along those lines like lecture capture, it would be really helpful. Subtitling as well. 

I think if we do move into a more virtual learning environment, the big thing which LSE does which I don't like is they want everyone to have their cameras on all of the time, and I don't know how many emails I have to write about how that's not accessible for a lot of people. For a multitude of reasons around disability, but also reasons around like parenting like what if someone’s breastfeeding, they don’t want their camera on while they're doing that necessarily. But it's LSE policy that your camera is on when you're in a lecture and things like that.

But if we do try more to merge together this virtual and real life learning environment, they really need to consider the rules around the virtual environment. 'Cause at the moment it’s always this focus or emphasis on making the speaker comfortable or the lecturer comfortable, and that is inaccessible in its own sort of way. 

And I think the same around in the more academic culture field, around things like virtual conferences and that sort of thing, which is a big thing we have to do as PhD students and how at the moment I can go to conferences which otherwise I wouldn't have been able to, 'cause it would be on international. It would be a really long flight. And I wouldn't be able to have this long flight and then go to this three day conference and then fly home again without crashing and burning for two months. Universities seem to think that that's an OK response if I have that like experience, you experience this conference and they don't really understand that I'd rather not experience that conference and have my health, then the other way around.

And I think the virtual world has been really great and making that side of academia much more accessible to different types of students that as well as disabled students, but also students that are carers or students that are parents, that sort of thing. Like, especially in PhD's there's always this undercurrent that every PhD student has money and is able bodied user can do nothing, there's nothing else to do but their PhD during the process and that's just not true for so many of us.

This sort of weird amalgamation we have at the moment of the virtual world, if that keeps going, then it would be amazing in making things better, but really needs to be looked at with how it can be feasible, if that makes sense.

Claire: Definitely. A lot of what you said there kind of really hints at kind of quite how rigid a lot of these institutions can be. Do you think the pandemic has finally helped to bring in some changes? Or do you think institutions that are more traditional are quite good at resisting changes, even in the face of pandemic?

Amelia: Yeah, I mean if it helps, I've been to, all of the institutions that I've been in have been quite traditional old fashioned kind of institutions that were built in like the 1800s. So like from an accessibility point of view, it's always pretty awful.

Also, I think them bringing electric capture and online learning and all these things are really positive. However, like it's also been really frustrating that, like disabled students and disabled activists have literally been calling for this for like the last like 30 years and institutions have always said that's impossible, we can't do that like it would be unfair. It wouldn't be academically rigorous. And then a global pandemic happens in all of the able bodied non disabled students like have to have these things put in and it kind of happens over the night.

Cassie: Yeah

Amelia: And I think as much as it you know benefits disabled students and a lot of disabled students are very happy about this kind of trajectory, it kind of almost reinforces that kind of narrative that it wasn't put in for you. And like disabled students, aren't worth that kind of accommodation. Because when we ask for it, it's impossible. Or it's too expensive or it like damages academic like standing or whatever they decide to say. 

I know Cassie was touching on like not being able to get into your lectures and like this is something that like I've experienced, as a wheelchair user and I think there isn’t a disabled student who has a mobility aid that hasn't experienced this. And I think it comes back to this idea that you are like lucky to be in higher education as a disabled person and so they try and kind of fit you into the normal system as much as possible because we were never as disabled people meant to be educated. The whole system isn't for us as disabled people. It's for people that aren't disabled. 

And I think all of the admin that you have to go through to kind of apply for reasonable adjustments. And apply for a lecture hall that you can actually like physically

Cassie: Laughs

Amelia: Get into is just ridiculous, but also it just proves the institutions as a concept are not there for disabled students. And I think we really have to look at that as an issue, whether we're in person or whether we're online. Because that's the kind of narrative that kind of sits through everything and keeps sitting through everything, which is quite frustrating.

And I think that's the thing that I would want to challenge universities on, especially as there is, you know, there is a law that says they can't discriminate against disabled students, but they have to anticipate that disabled students are going to be at their institutions.

And I will… I mean, I don't want to try and be kind of, like too sassy but like I think they need to look at what anticipatory actually is, because a lot of the systems at higher education are the disabled person having to declare, the disabled person having to provide, the disabled person having to fight for his will adjustments. I haven't seen many institutions actually being anticipatory and assuming that disabled people are there. Normally it's quite the opposite, and I think that's the kind of core of the issue. From what I can tell anyway, well.

Claire: How do you feel about what Amelia’s just said Cassie?

Cassie: Oh, I completely agree with all of it. There’s this sort of, as Amelia said, assumption that as a disabled student, it’s, you’re lucky to be there or you're there 'cause of positive discrimination or whatever along those lines. 

But the fact is 'cause universities are a public body they held to the higher level of the 2010 Equalities Act. And therefore they should be, as Amelia said, anticipating or like, considering in advance that disabled students will be there as opposed to being surprised when we arrive.

And it just, comes down to this whole idea and stigma that we, as disabled students or disabled bodies were not designed to achieve or we're not gonna get very far because of this disability that you have. And it's absolutely true that it's surprising when disabled students are in higher education and that shouldn't be. 

And I think that's where the issue lies, is that, they’re always surprised, like is and this is such a problem. I know when I got onto my PhD program, I didn't really apply as such. But I got to the University and they were surprised that I had all this access needs and I was like, well, if you had a system where someone applies in a certain way, I could have declared these before I got here. But the fact is that you're still dependent on me declaring that fact, and it's exactly as Amelia said, the disabled student has to come forward and say this is my disability. This is proof of my disability. These are the adaptions I need. Put them in place.

Right for me they put a electric door on my office, the week lockdown started. So I haven't been able to go to it, but it took me being there for 7-8 months for them to be able to do that. And that's 'cause I had to provide XY and Z and then have them go: well, you could just move offices to one which already has an electric door.

And it's this case where it's like you put this adaption in place for one person and have therefore assumed that that's what every disabled student needs.

But we all have different needs. I don't want to sit in an office by myself, away from my colleagues, 'cause that's the office you made accessible. You should be making every office accessible because not everyone is born disabled. People can become disabled. People which already work at your university may have an accident. They may have had Covid. They may get long Covid and need these access things that you will need to consider, but they just don't. Cause it's always surprising.

Amelia: Yeah, and I think as well, like you bring up a really good point, because I've heard this from like universities, staff and students that like if they are disabled, your level of what you should find acceptable as a disabled person…

Cassie: (Laughs)

Amelia: Is a lot less. So like in like, if you literally said to any academic, you need to move your office, you need to move away from your kind of academic counterparts. There'd be uproar. It would never happen.

But if you are a disabled academic, that is something you are told that you have to accept because it's  easier for the institution to put you somewhere else, like. It just makes me so mad.

Because it's like, like if you literally like, for example, when I was a disabled students officer, I was in a collegiate university at Durham. The room on the bar only had access through a staircase. It now has a lift. After 4 1/2 years, thankfully of me like campaigning quite heavily on actually getting a lift in the institution. But before that I had to go round the back of the building down the hill, down the back of the bar that was normally covered in broken glass, and snow, depending on the time of year, to not knock on the back door, to get somebody else from the bar to let me into the bottom.

So because I was a bit, bit annoyed about this situation, I was like, right for a single day, can we close the staircase and make all of the students go to the bar through the accessible kind of area? And they went: No, we can't do that.

And I was like why and I was like because that would be terrible for the students and they wouldn't accept that, so we can't. And so I was making kind of the point of, but you're making the disabled students do that, and that's supposed to be acceptable. But you're not going to kind of subject that treatment to anybody else.

And I think this is the reason why if you are a disabled student that, like, looks like you're not disabled, in air quotes, and can hide your impairment, this is why students do not declare their disabilities. Because of the treatment they then have in these institutions because, you are, they’re not, like your level of acceptability or what you have to take is a lot. It's just a lot worse because you have to deal with that narrative of you are lucky to be here type thing. 

And I think that is like a massive issue around not only how individual students feel and like their access to their education, but how it affects trying to coordinate disabled students as like a group when this is the kind of thing that they're having to like sort out all the time.

Cassie: Yeah, I think it stems from this idea that when you're disabled you have to be grateful for what you have.

Amelia: Mmm (in agreement)

Cassie: And especially, I think the bar example you gave is a really good example that how universities act where they're like: oh, you should be grateful that we have this thing in place at all for people like you.

And it just ends up reinforcing this sort of othering thing that universities, really love, with every intersectional identity. And it’s absolutely right that where you'd say, is this acceptable for the student body? Like especially managers at universities, they care so much about the student body, but they don't really care about students.

Amelia: Mmm-hmm (in agreement)

Cassie: In my working with them, they don't really, they don't care about students at all. But they care about the student body. And if 90% of the student body is happy then why would they spend the money to make that other 10?

And it's just so common, and I think that comes back to this whole to the pandemic, where suddenly that 90% were unhappy. They weren't able to study. They needed these adaptions, so they appeared overnight where we've been asking for them for years.

Amelia: People should kind of consider when you're talking about disabled students, is that every disabled screen is a disabled person, so on top of their academics and the kind of very specific barriers that you have in kind of higher education or education in general, like you're also dealing with the kind of things we talked about, like the kind of access to like medical care, that access to kind of social care, all on top of trying to do it like degree.

So I think when, the same students are kind of being asked, and being told that they’re being unreasonable or that they’re spending all of their time having to fight their institutions to get you know into their lecture hall or whatever it is. And I think there's just a complete like ignorance of the fact that we have to do this as disabled people for every aspect of everything, and I think it would be quite helpful if universities would at least like educate themselves about that.

Cassie: I completely agree with that. Like I think the number one or one of the most important things universities need to learn about disabled students is we're not a homogeneous group. A lot of disabled people who made it to university and are studying at higher education often aren't the classic student. Like we’re not all 18 and have just come fresh out of college and got into the university. Like it's not, that's not our standard experience, so we can't be put in with this homogeneous group of students.

But also within the group of disabled students, we’re not a homogeneous group either. We all have different access needs. We have different disabilities. We have different extents of impairment. Things along those lines that where a university goes: oh, we've put this thing in place for disabled students. There you can all access it. It's completely pointless 'cause they would have put it in place for a group of disabled students, and that's great for them. But what good is it going to be that for another group?

And I think they really need to learn that there's different types of impairments and we all have different needs and they can't just group us all together and give us: look accessibility like that's how it works.

Claire: So to finish off today, could you tell me Cassie first, what's next for you in the coming months?

Cassie:Yeah. I'm waiting for ethical approval to start my study, so I'm doing a set of interviews in a set of case studies with carers for people which have mental illness and I'll be doing those for the latter half of this year and into the beginning of next year. Probably. And then it will be panic writing my thesis. (Laughs)

Claire: Is there any other way?

Cassie: I know, yeah.

Claire: Best of luck with that, Cassie and thank you very much for sharing all of all of your experiences with us today. We really, really appreciate it.

And so Amelia, onto you, what does the future hold for you?

Amelia: I recently started a job in higher education, so that's been really exciting and really positive and I'm hoping as I have a place to do a Masters degree in disability studies that hopefully when the pandemic kind of calms down a bit, I'll be able to kind of go back into education and finish off a Masters degree and maybe even after that PhD.

Claire: Excellent, well best of luck to you too.

So, we approached both the universities Amelia and Cassie mentioned for comment on the issues they raised. 

A spokesperson for Durham University said “During her time at Durham University we worked with Amelia, both as a student, and in her role as a Sabbatical Officer for Durham Students’ Union, to understand and seek to address concerns that she raised. 

“Whilst respecting the experiences that Amelia has discussed, we are resolute that inclusivity is at the heart of our University and we are proud of the progress we have made. 

 “We are deeply committed to ensuring that all our students have the best possible experience during their time at Durham and believe our high student retention rate, including those with disabilities, demonstrates this.” 

“Nearly 20 per cent of our student body disclose a disability and staff across the University work hard to help ensure that adjustments are put in place to facilitate their engagement with academic studies and the wider student experience.

“We have made, and continue to make, significant investments in our estate to improve access for all students, adopting high accessibility standards when designing both new buildings and the refurbishment of existing buildings.”

You can find their full statement in our shownotes, which are available in the episode notes on our Simplecast website, the-disability-download.simplecast.com  

Meanwhile an LSE spokesperson responded to Cassie’s comments by saying:

“We are grateful to Cassie for sharing her experiences. Clearly there is more for the School to do in terms of accessibility and support for our disabled students, which we will raise with our colleagues. We are heartened to hear what has worked well over the past year and will seek to build on this as we learn from our handling of the pandemic.” 

End quote

Erin: So thanks so much to Cassie and Amelia for chatting to Claire and sharing their experiences with us as well.

I think that both really highlighted the different ways the pandemic has affected not just learning but disabled students on a personal level as well. And you know, highlighting some of the adjustments and accessibility features that really should just be commonplace at uni now. 

Amelia also mentioned at the start that she is the Network director at Disabled Students UK. They've actually published their own report about the impact of COVID-19 on students, so you can check that out at disabledstudents.co.uk. And they’ve got some other really great resources on the website as well. I’ll also will pop that link in the show notes of our Simplecast website as well, so you can find all that info there too.

So as always, you know we really want to know what you think about the episode.

If you've got any thoughts on what's been discussed or if you've got some ideas for future episodes as well.

So please do email us at DisabilityDownload@LeonardCheshire.org or you can DM us on Twitter or Instagram @Leonard Cheshire.

And as always, please do remember to like, share and subscribe to the podcast.

Thanks so much for tuning in everyone.

Stay safe until next time I'm Erin and this has been The Disability Download.