Being a Disabled Researcher with Megan Maunder
In this episode I talk to Megan Maunder, a PGR at the University of Exeter about being a disabled researcher. I also discuss my own experiences of working in HE and being disabled, as a I suffer from chronic invisible illnesses.
If you are interested in learning more about structural inequalities in HE, you may find the AdvanceHE Equality in higher education: statistical report 2019 useful.
Music credit: Happy Boy Theme Kevin MacLeod (incompetech.com)
Licensed under Creative Commons: By Attribution 3.0 License
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Hello and welcome to R, D and the in betweens, I'm your host, Kelly Preece,
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and every fortnight I talk to a different guest about researchers development and everything in between.
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Hi, everyone, and welcome to the latest episode of R, D and the In Betweens.
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My name is Kelly Preece. And as always. I'll be your host. Today I'm talking to one of our postgraduate researchers, Meghan Maunder,
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to carry on the series that I've started about talking to researchers and H-E
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professionals about what it's like working in higher education and being a researcher.
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When you have a protected characteristic. So I'm gonna be talking to Megan today about being a disabled researcher at higher education.
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Now, it's really important to note that I'll be interjecting my own experience into this conversation, as some listeners will know.
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I have a longtime chronic health condition which is covered by the Equality Act.
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So in legal terms, I am disabled and therefore experience challenges working in higher education and living my life,
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but also receive an awful lot of support. So I'm going to be talking with Megan about our experiences.
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So hi, I'm Megan. I'm currently a third year PhD student at the university of Exeter, and I live with multiple chronic illnesses and disabilities.
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I didn't get a proper diagnosis or a label, most of them until later in my undergraduate and during my PhD so
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a lot of it for me, even though I sort of been living with it my whole life.
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Dealing with the admin and the bureaucracy is something that is very I've had to learn very quickly over the last two years.
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Yeah. And I can as you know, I can relate to that hugely.
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One of the reasons I wanted to have this conversation is because I also have a number
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of chronic illnesses and have only in the past few years been diagnosed and
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I'm kind of navigating the support that is and isn't available and how to best operate
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look after myself with the academic environment within an academic environment. So.
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I guess let's let's start with the big one. How accessible do we feel
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Higher education and research is for people with chronic illnesses such.
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Big question. Yes, I think it does look lot like a lot of it depends on what field you're in.
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the type of research you're in. Definitely. So how does that work?
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I mean, in my personal experience, my immediate supervisory team and colleagues have been really great and supportive.
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My, I guess, battles, if they were being with admin bureaucracy and making sure that I get the support I need.
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I mean, even in my undergraduate, it took me until my master's year,
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which four years to get all the accommodation I needed for my exams, which is a very long time.
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And that only really came as a result of me having a lot of support from my personal tutor or friends and family, really.
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And I think that truly there's a lot to be done. And I was really hoping, given the current situation, things would become more accessible
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But if anything, I actually think they've become more hostile. Really?
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Yeah. I mean, from personal experience now, accessible routes are being blocked in favour of one way systems.
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I think that there's a lot of discussion about things we're putting in place
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that disproportionately affect people who are disabled and chronically ill.
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I know you know, worry for me is that with the push to have everything outside is great in the summer.
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But in the winter, if I get cold, it really exacerbates a lot of my symptoms.
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And that's a worry for me. And the kind of loneliness that you get at that and not being on campus at the moment is also.
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So I'm lucky that I have a home office setup, but not everyone does.
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I think that broadly it's the extra load that you have of being a disabled kind of human individual where you have less energy than everybody else.
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You're a lot more pain than everybody else who's able bodied
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And then you have this whole load of admin you to deal with, with your already limited time in order to make academia accessible.
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And that, for me, I think is the biggest hurdle.
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And for a lot of people, it's the form filling and the constant battle and chasing people up to get what you need in order to access it.
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And there still seems to be. A sort of statement that these things are not.
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Levelling the playing field, but somehow giving you an advantage.
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And people seem to think that's a bonus not realising that you're already miles behind everyone else.
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So this is just helping you catch up. Yeah, and I.
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I really relate to that. What you're saying about where we've got, you know, more physical barrier barriers,
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less energy, more pain, all, you know, all of our kind of medical symptoms, as it were.
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But we've also got to do more work to.
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Access support systems and be, you know, be anything near a level playing field with other people, and I think that's the fundamental irony, right?
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We've got less energy, but more work. Yes, exactly. And.
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The the thing that I find really interesting is this, and it applies obviously at the moment to a lot of different protected characteristics.
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But this idea of kind of putting things in place to support disabled people.
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Provides advantage. So in the end, we end up with.
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You know, this is perception perhaps that we might have more advantage than other people.
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Well, not true. Like you say, it's just levelling the playing field.
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is that something that you've overtly experienced in academia or have you felt that's just an undercurrent?
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I think people who are directly involved with me, like I said, that they've been very supportive.
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It's definitely something I felt that dealing with disability and accessibility is not a priority within the administration side of things.
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And I think people do tend to feel like sometimes you make a fuss of nothing.
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But it is also like the little micro aggressions and comments,
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like when I had a new office chair and someone said to me, Oh, gee, do you not just like the office chair?
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I was like, no. You know, I'm a long term disabled. I need a prescription filled chair to be able to be in the office.
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And, you know, I, I, I think you don't have to think so. Some of course you do. But it's the little microaggression, I think, that builds up.
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And when I was an undergraduate and applying for graduate jobs, a lot of schemes I applied for, there was a guaranteed interview.
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If you were disabled student and people, why don't you see that's fair?
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I said, well, no, it's because they can't make the accommodations you need in the application process.
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So why should I be denied the opportunity to apply?
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They've decided that the cheapest and easiest route for them is just to offer me an interview rather than trying to accommodate me.
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Like I don't have an advantage. I'm just not able to compete in the same way you are.
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Yeah, I know. I know what you mean about the micro aggressions. And I, I find having an invisible illness.
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People are people who are really, really understanding up to a point.
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Yeah. And then it's kind of like, you know, I've got a sit standdesk which.
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Actually, since I got it, I've not been able to use very much because my it was my knees that was I was struggling with and sitting for so long.
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So I needed to kind of stand and alternate.
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And now it's the moment I'm going through a phase where my feet are actually the problem and I can't stand right now
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So it's and people will sort guess that, oh, you know, you obviously didn't or did you did you not really need that in the end?
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And that kind of thing. And I think because. Most of, what, ninety nine point nine percent of the time, I don't look visibly unwell.
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There is that kind of I fear that it's those micro aggressions where you feel like
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this is that tiny bit of doubt in someone's mind that you that you're telling the truth.
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Yeah, absolutely, and I think particularly like you said, when it comes to accommodations,
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I think what people don't understand that it's not a binary thing.
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You constantly your situation is constantly evolving, your tolerance, your pain levels and your ability to understand what's going on.
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And I think that you get that the system we currently have doesn't make room for those accommodations to change.
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And like you said, you feel like you have to kind of justify your current things even if don't work for you.
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And it feels like under the current system, you don't have the space to experiment and figure out what works best for you,
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either because you kind of have to try and take everything because you don't know how many chances you're going to have to reassess your situation.
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Absolutely. Absolutely. So I wanted to pick up on that as well,
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what you said about about kind of recent developments due to COVID and the introduction of one way systems and the impact of that on accessibility.
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Can you talk to me a little bit about some of the issues you have experienced or foresee
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around the kind of COVID related changes that make campuses less accessible?
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Yeah, I think from not on campus, but for example, I have an issue going to my bank because they wanted me to go up in the lift and down the stairs.
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And I said, well, I'm not in a position to manage this today.
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And they were a bit taken aback because obviously I didn't look disabled to show that someone will come to a different arrangement for you.
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As it was, they sourced everything so they could do everything downstairs.
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But it worries me that on campus, people are going to see people who are they don't know are visibly.
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It worries me that on campus, the people who are physically disabled might be called out for doing what's right for them,
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because whilst I'm pretty open about my disability, obviously not everyone who knows me knows I'm disabled.
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And also, I worry with particularly how the university word things about challenging people who are not wearing a
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mask and breaking the one way system when we know there are people that are not in that position.
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And I think that particularly in a world where people are scared and people are unsure about themselves.
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People are less likely to be kind and tolerant about people who are behaving differently
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And I think that that for me is really the key.
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You've got the combination of we're already in a you know, I was talking to someone about this not long ago about,
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you know, we're already in that kind of fight or flight mode and we have been for months because of this pandemic.
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You know, we're already scared.
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We've got, you know, everything that all our emotions, our senses, everything is heightened to a degree to help us deal with the current situation.
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You combine that with the micro aggressions that people already face in in an academic environment or in any environment.
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Indeed. And so and then, you know,
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the very real instances we've seen out and about of people challenging people not being socially distanced or not wearing a mask.
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And then the fear that that will happen when you come back on campus becomes very real.
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And I think it's difficult for people to understand that without the context of the micro aggressions.
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I don't know what you think. Oh, absolutely. And I think, you know, as a society, we're all trying to pull together right now.
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And I'm not saying that the measures in place are not needed. Yeah,
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but there's a a strong worry and a concern that yet because of these micro aggressions and
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this Build-Up and this really strong tension that we're feeling in society right now,
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it's going to disproportionately effect people who are disabled and who the current systems don't work for
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And I think you're right in saying that it's it is a systematic thing that's being exacerbated by this situation.
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And one of the things that. I mean, I think we've we've talked about it in the past as well.
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Is that the the idea of any campus being accessible.
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Is loose in terms of there's there's a difference between meeting the legal requirements and being fully accessible and inclusive.
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And you know,
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the key example of that being the building that I work in has a push plate door to get in and then it has a pull door to get in the actual.
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But again, a hallway and then a pull door to get into the actual building. Just that.
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So you can get into that. You can get into the corridor, if you will, but you can't get further.
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Unlike, you know, we know a lot of buildings on our campus.
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But this is true of all university campuses and all public spaces, really, that have one accessible entrance.
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And how does that work with a one way system? Well.
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The fact that, you know, that these buildings and these campuses generally on necessarily built to properly be inclusive,
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but to kind of meet the requirements of the law. How does that make you feel as a disabled person?
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I think it's incredibly frustrating and it feels to be unfair that, for example, in the past.
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Yeah, there have been times where the quickest route between my building, I see the building.
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I'm not able to make because I've it's been a day where stairs have not been my friend, and the sensible route is about four times as long.
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So not only is it adding extra time to my day, but it's also taking more out of me
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because I'm having to make that route.
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And it's just incredibly frustrating that in 2020, when equality, equity and inclusivity should be at the top of everybody's priority.
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That these things are constantly overlooked and when they brought up they're not taken seriously, particularly like you said, with doors.
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It's so frustrating for me to push heavy doors like it causes me an incredible amount of pain.
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And when I say to people, they say that's not a really big deal in the grand scheme of things, is it?
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But it's something that the university in reality, there are plenty of solutions to do.
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It's just not high on the agenda. And it frustrates me.
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It feels like to say, well, students are not as valued and the same for disabled staff as well.
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And I think that that's that's getting to the crux of it, isn't it?
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It's not it's not just the kind of the actual access issue and the fact that, you know,
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you can't the the you know, the accessible route to your supervisor takes it out of you.
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It's actually that fundamentally. It it that those as sort of systematic and structural micro aggressions, if you will, make you feel less welcome.
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Absolutely, and especially when you're in a group, essentially to people who you don't know that well on a different academic campus, for example.
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And they try a route that's successful. It's really hard. Everything isn't accessible.
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It's really hard to be the one to speak up all the time, be like, no, actually, I can't do that.
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Can we do this instead? And the onus is always on the individual.
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And it's an extra emotional load.
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It's an extra load logistically, because you have to plan your trips in a way that a lot of people can just turn up and hope for the best.
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And that's not an option for myself. And, of course, a lot of disabled students.
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So. It's frustrating that the onus is always on you and it's an extra load.
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You have to carry when you're already carrying more than everybody else. Absolutely.
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Absolutely. Can we talk a little bit about being being a researcher and what what challenges or or
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limitations there are from the system for engaging kind of in the full research academic life?
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If you are disabled or chronically ill other. Are there particular things that are difficult or challenging?
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Well, I have a very big pet peeve about what's your pet peeve?
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It's an injustice. It is not fair. I really it really frustrates me that as a student, you're only exempt for council tax if you are full time.
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If you if you're studying full time, as soon as you drop down to part time, you have to pay council tax.
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So if you're a student who's decided that they'll take the drop in income of a stipend because they can't physically meet those five days.
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Not only losing your income, they you're losing your income because now you have to start paying council tax.
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Yeah. And that's the same with sick leave. So if you're UKRI funded student, you get up to 13 weeks sick leave pay to twelve months,
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which even if you're an able bodied person and get into an accident, 13 weeks probably isn't enough to aid recovery if it's a pretty serious accident.
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So if you're dealing with long term chronic illnesses that say it's quite difficult to access.
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I feel like a lot of these. Little bureaucratic things could just be fixed by the U.K. sector as a whole,
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starting to employ PGR students as employees rather than students with a stipend.
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I think falling into this grey area where you work as a teaching assistant and you're not really an undergrad,
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you're not doing a taught, you're not doing a taught module, you're not taught student.
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You're not really staff either means that actually you don't really feel represented either.
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And it's really hard to to make that change in such a small group of you.
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And you're only sort of doing that for a short period of time.
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And that really impacts your research. And like I said, because I have less time to spend on my research when I'm trying to mitigate dealing
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with all my health issues and all the emailing I have to do separately academia.
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And also I have to chase up all of the things that I need to accommodate me to make that work.
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And it seems unfair that the university doesn't take on more of the responsibility to help make that easy for you.
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And I think that the part time kind of flexibility issue is really,
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really key because we know so many people who are disabled or chronically ill either can't work full time or if they or like me,
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I am able to work full time, but I am able to work full time if I'm able to work flexibly.
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And if I wasn't able to work flexibly and I will sort of put my hands up and say my experience of support and opportunities,
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flexible working has been incredibly positive, which I know is not necessarily the norm.
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And I accept that. But, you know, I work I do compressed hours and have done for a year and a half.
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No. Almost two years now. And that really helps me having a regular like every two weeks I have a day off in which I just rest.
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And the in the positive impact that has had on my.
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Physical or mental health is substantial. And I've always had the opportunity to work at home one day a week.
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Obviously I'm working at home all the time. And when we go back into a post COVID world, we will be working at home a little bit more.
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And working at home physically has been very good for me because it takes the
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kind of takes the commute and takes the the things that I find challenging,
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particularly first thing in the morning with arthritis out of the day.
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And so I'm able to kind of, you know, to use the sort of well trodden spoon's analogy.
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I'm I'm able to retain some some of those spoon's that I use doing kind of very basic things like getting in the shower and driving to work.
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And I can I can use either on my work, which is a good thing, or I can, you know, dare I say it,
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use them on things that I do for myself, like hobbies or relaxing or or seeing friends either online or socially distanced.
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Obviously. You know that flexible working is really crucial.
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And I know where people don't have to. They have no choice but to work part time because it's the only way that they can manage.
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Oh, I completely agree. If my supervisory team wasn't fully supportive of my flexible working hours and even pre-COVID with me working from home,
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not Full-Time, but I tend to split my time. So I have certain activities sitting at home and sitting one side of me office.
00:21:16,000 --> 00:21:20,000
I'm not sure I would have stuck with it because, like you said,
00:21:20,000 --> 00:21:25,000
there's always a choice that you have to make and how you want to spend your limited energy reserves.
00:21:25,000 --> 00:21:29,000
Yeah. And me sometimes more mornings.
00:21:29,000 --> 00:21:37,000
Difficult. I've never been a morning person anyway. But my conditions exacerbate my issues in the morning.
00:21:37,000 --> 00:21:43,000
Being able to be at home and not worry about pushing myself to get dressed and walk or drive
00:21:43,000 --> 00:21:49,000
or take public transport gives me that time to think and lets me invest my time better.
00:21:49,000 --> 00:21:56,000
And I think there's a lot of misconceptions that just because you can work, you can't be in that much pain.
00:21:56,000 --> 00:22:01,000
You can't be that ill. A lot people don't realise that it's a constant choice you have to make.
00:22:01,000 --> 00:22:08,000
Yeah, it's you. Do I feel well enough to work today. Do I choose work above my health and that.
00:22:08,000 --> 00:22:12,000
For me is a really, really challenging one.
00:22:12,000 --> 00:22:21,000
I mean, we know, you know, the academia has a culture of overwork and kind of toxic cultures in relation to mental health.
00:22:21,000 --> 00:22:25,000
And actually, it's take me since I.
00:22:25,000 --> 00:22:29,000
So I've I've stopped being an academic five years ago and in professional services.
00:22:29,000 --> 00:22:33,000
And during that time have been able to carve out much better work life balance,
00:22:33,000 --> 00:22:39,000
which has been better for both my mental and physical health, but also.
00:22:39,000 --> 00:22:47,000
Kind of checking out of both that culture of overwork, but also the kind of the prioritising of work over.
00:22:47,000 --> 00:22:51,000
Over myself, yeah. And I'm still doing it.
00:22:51,000 --> 00:22:55,000
I'm getting I know I'm not well enough to work and I'll and I'll get it.
00:22:55,000 --> 00:23:02,000
I'll get out of bed. I'll have a shower. I'll drive in and I'll arrive at work. And I'll just be absolutely exhausted and they'll lean on.
00:23:02,000 --> 00:23:08,000
My colleagues will look at me and go, Why are you here? Why are you here?
00:23:08,000 --> 00:23:14,000
And actually, I've done it where I've gone into work. And then I've been so unwell from doing that, but I couldn't go home again.
00:23:14,000 --> 00:23:19,000
And it's just, you know, but there's that that guilt where I feel like.
00:23:19,000 --> 00:23:25,000
But. But I should be working because, you know, I don't have a broken leg or whatever.
00:23:25,000 --> 00:23:30,000
You know, I should I should be going to work. I should be doing something. You know, I've got lots to do.
00:23:30,000 --> 00:23:34,000
You know, that wonderful illusion that we have that the world won't keep churning without us
00:23:34,000 --> 00:23:47,000
If we're not doing our jobs. And how do you feel like your disability feeds into those kind of overwork, slightly toxic cultures and academia?
00:23:47,000 --> 00:23:55,000
Yeah, like I said, I think I have been really lucky that my supervisor was incredibly supportive and helps my flexible working and, you know,
00:23:55,000 --> 00:24:04,000
the last few months and it's craziness aside, for me, I feel like I'm on track and I'm in a relatively good place with my research.
00:24:04,000 --> 00:24:11,000
But you're right, it's not retraining your brain and removing those expectations from society and
00:24:11,000 --> 00:24:16,000
sort of the internalised ableism about what we should and shouldn't be doing.
00:24:16,000 --> 00:24:22,000
And I think, you know, just to looking at a general terms for everybody in the pandemic, at the stop,
00:24:22,000 --> 00:24:27,000
you say you're working from home, you should get up and get dressed and make it like you're going to work.
00:24:27,000 --> 00:24:31,000
I think that was sort of abandoned a few months in when people realised that that wasn't
00:24:31,000 --> 00:24:36,000
really sustainable when everyone was struggling with this huge amount of uncertainty.
00:24:36,000 --> 00:24:41,000
And it's it's the same process for me either. You have to I have to realign my expectations.
00:24:41,000 --> 00:24:50,000
But you're right. With the toxic culture, I was on a course a few years ago now, and it was supposed to be a session of our well-being.
00:24:50,000 --> 00:24:53,000
And the person said, oh, who here actually sticks to their 40 hour week?
00:24:53,000 --> 00:24:58,000
And I put my hands up and I felt very singled out for it.
00:24:58,000 --> 00:25:02,000
And I politely spoke to the person who who wrote it at the end because he was basically saying,
00:25:02,000 --> 00:25:07,000
oh, well done, you're sticking to what we should be doing. That's what we should be aiming to do.
00:25:07,000 --> 00:25:12,000
And it's a very brave thing to make sure you stick to your work hours. And I said, we know there are some weeks.
00:25:12,000 --> 00:25:16,000
Right, to do a lot more than that. But I try and balance it out with times what I'm doing next.
00:25:16,000 --> 00:25:21,000
But I said, you know, you brought this up in a context, not knowing what my background was.
00:25:21,000 --> 00:25:27,000
I don't have a choice. I think if I routinely overwork myself, I won't be able to do any work.
00:25:27,000 --> 00:25:36,000
I've done that, you know, and that's been part of my journey over the past five years is I have routinely overworked myself and I've ended up.
00:25:36,000 --> 00:25:43,000
In one case, quite literally, flat on the floor, unable to move so much pain every couple of years ago, I did.
00:25:43,000 --> 00:25:53,000
I had a week where I did. The induction day in Exeter, which the induction is something I kind of do the all the presenting and talking at it,
00:25:53,000 --> 00:25:59,000
and I find it incredibly, incredibly draining and it's all on my feet all day, which I'm not good at with my joints.
00:25:59,000 --> 00:26:04,000
And then did it and drove down to Cornwall the next day and did the same thing in Penryn.
00:26:04,000 --> 00:26:09,000
And then at the end of that, I drove to Birmingham to present at a conference the next day.
00:26:09,000 --> 00:26:19,000
And I got back on Thursday and I just told my boss and said, I'm gonna I'm I'm done
00:26:19,000 --> 00:26:21,000
I couldn't physically
00:26:21,000 --> 00:26:30,000
I couldn't get a bed for a week because it was and I you know, like you, I had a fantastic, fantastic boss who, when I got back to work, sat me down.
00:26:30,000 --> 00:26:35,000
And said you are never doing that again, do you hear me?
00:26:35,000 --> 00:26:42,000
Like, you cannot physically do that. We will find other ways. But, you know, and that and I felt incredibly guilty.
00:26:42,000 --> 00:26:46,000
So I thought, well, that shouldn't be an impossible thing.
00:26:46,000 --> 00:26:53,000
To do you know, to do things at different campuses and then to travel, to go to a conference, but actually it's the kind of.
00:26:53,000 --> 00:26:58,000
Situation of well, for me. It is. Yeah.
00:26:58,000 --> 00:27:05,000
And actually this year, getting to do you know, I did all of those things actually this year, but virtually.
00:27:05,000 --> 00:27:12,000
And it didn't take anything like the same amount of energy, and because of that, I did a better job of it.
00:27:12,000 --> 00:27:22,000
And I didn't end up taking a week off work to recover. But it seems to me it's like something you said right at the beginning,
00:27:22,000 --> 00:27:27,000
which I really relate to, which is, you know, after getting diagnosed and off, you know,
00:27:27,000 --> 00:27:32,000
going through a period of potentially kind of fighting a medical system that, you know,
00:27:32,000 --> 00:27:43,000
for us doesn't value or doesn't believe in women's pain and kind of fighting and fighting and fighting to get a diagnosis.
00:27:43,000 --> 00:27:49,000
You then have to completely reframe your attitude to all of your symptoms.
00:27:49,000 --> 00:27:55,000
And learn how to manage them, because the way that you've managed them before.
00:27:55,000 --> 00:28:00,000
I I don't know how to say this quite, but it doesn't really work.
00:28:00,000 --> 00:28:04,000
No, I completely agree. And you know what's wrong? Yeah.
00:28:04,000 --> 00:28:10,000
I think especially when you do know what's wrong, it's easier to figure out how you can help yourself.
00:28:10,000 --> 00:28:16,000
And I realise that being an academic does actually come with them on a set amount of privilege when dealing with health in
00:28:16,000 --> 00:28:23,000
that you have an institutional access to research papers and that you also have the ability to understand those papers.
00:28:23,000 --> 00:28:27,000
So I can go to my specialist appointments armed with all of the reading I've done.
00:28:27,000 --> 00:28:35,000
Yes. Also, knowing what my potential clinical outcomes are and the type of things I would like to experiment with are going to help me.
00:28:35,000 --> 00:28:42,000
You're right. It was having that label that allowed me to engage with that. And like you said, travelling takes out of me.
00:28:42,000 --> 00:28:47,000
And I have to build in rest days if I'm travelling for a conference.
00:28:47,000 --> 00:28:51,000
It's not an option to not have those who may like it really works me out.
00:28:51,000 --> 00:28:57,000
And it's the same in my personal life. I'm very just to people who can go on holiday, come back on a Sunday and start work on a Monday,
00:28:57,000 --> 00:29:01,000
because I need that day at home to recover, even if I had a great time.
00:29:01,000 --> 00:29:09,000
Travelling, will take it out of me. And for me, having my diagnosis meant I could pinpoint a few things that help mitigate my symptoms.
00:29:09,000 --> 00:29:12,000
Like I actually, for me, the pandemic.
00:29:12,000 --> 00:29:18,000
Helped some of my symptoms in the sense that I'm always in a prescription built chair or a supportive chair or in bed,
00:29:18,000 --> 00:29:26,000
which meant that issues with my spine and my neck pain was reducing and I could mitigate that a bit more because I wasn't
00:29:26,000 --> 00:29:34,000
in a position where I sit in those awkward plastic chairs in a seminar room or a sitting in an uncomfortable lecture hall
00:29:34,000 --> 00:29:38,000
And that's something that as the world starts to be open again,
00:29:38,000 --> 00:29:43,000
I worry about meeting that balance, knowing how much of a difference that's made to me.
00:29:43,000 --> 00:29:53,000
Yeah. Yeah, absolutely. And I think, you know, we've talked already about some of the the fears,
00:29:53,000 --> 00:30:01,000
the real fears that we and other disabled people have about kind of returning post COVID
00:30:01,000 --> 00:30:07,000
And that's not even taking into account where people are vulnerable because of their disability,
00:30:07,000 --> 00:30:16,000
whether that's whether that vulnerability is kind of government approved or government sanctioned or not.
00:30:16,000 --> 00:30:21,000
The level of challenge, I think. And I think that's the thing that we're seeing.
00:30:21,000 --> 00:30:30,000
We're hearing a lot within kind of the discussions around Black Lives Matter, as well as the extra physical and emotional labour.
00:30:30,000 --> 00:30:36,000
Involved in fighting to be on a level playing field with everybody else.
00:30:36,000 --> 00:30:47,000
Yeah, absolutely, and I think that, you know, especially in the past, that Labour has been done for free and I think that now more institutions are,
00:30:47,000 --> 00:30:57,000
I guess, realising that this is something that takes a very emotional toll on people, as well as the physical time spent engaging with this.
00:30:57,000 --> 00:30:59,000
And they're starting to compensate people for that.
00:30:59,000 --> 00:31:06,000
I know that some institutions are now starting to pay their speakers who come and talk about this as they should be,
00:31:06,000 --> 00:31:10,000
because it is a very difficult thing to navigate.
00:31:10,000 --> 00:31:18,000
And I think also there's a very large difference between people who research these things and people who experience these things.
00:31:18,000 --> 00:31:25,000
Lived experience is something that I think isn't taken.
00:31:25,000 --> 00:31:32,000
It isn't held in as high regard. Yeah, I mean, for me, I'm so lucky that I've had incredibly supportive people in my life,
00:31:32,000 --> 00:31:41,000
but also I have disabled friends and family who helped me navigate what is quite a difficult world and process and
00:31:41,000 --> 00:31:51,000
give me that support and introduced me to to theories and metaphors and ways to deal with it and explain it.
00:31:51,000 --> 00:31:58,000
And you, sadly, especially, you can draw parallels with all sorts of groups that are in a similar situation and
00:31:58,000 --> 00:32:04,000
that they're not represented and they're not being accredited fairly for their labour.
00:32:04,000 --> 00:32:10,000
That's something that I really wanted to pick up on. It's a conversation I've had with a few people lately, actually with chronic illnesses,
00:32:10,000 --> 00:32:16,000
which is about kind of the the the struggles and difficulties of having a chronic
00:32:16,000 --> 00:32:22,000
illness when you are not surrounded by you don't know any other people with.
00:32:22,000 --> 00:32:30,000
That chronic illness or another chronic illness. You can relate to and share experience with, you know, have a whinfe as well.
00:32:30,000 --> 00:32:41,000
We will. Well, I love a whinge. And not having that kind of network of support in a work context were also.
00:32:41,000 --> 00:32:46,000
The way that not having visible role models as well.
00:32:46,000 --> 00:32:54,000
Who are disabled or have chronic illnesses, the impact that that has on that sense of sense of belonging.
00:32:54,000 --> 00:33:04,000
You know, I when I first got my diagnosis, I knew nobody else under the age of 60 with my medical condition.
00:33:04,000 --> 00:33:09,000
And as much as kind of I talked to older friends and family.
00:33:09,000 --> 00:33:14,000
I never felt like they really understood what I was going through.
00:33:14,000 --> 00:33:19,000
Yeah, because they weren't kind of twenty nine years old and dealing with this diagnosis,
00:33:19,000 --> 00:33:30,000
and it's only through being very open on social media that I have met and connected with a range of other people who are around the same age as me,
00:33:30,000 --> 00:33:34,000
who have the same medical condition as me and provide a supportive community.
00:33:34,000 --> 00:33:41,000
And sometimes I don't know how I'd cope without that. But I was talking to someone who is chronically ill, who knows no one else.
00:33:41,000 --> 00:33:48,000
Her age who has her medical condition and feels kind of so isolated and so alone and doesn't feel like as well.
00:33:48,000 --> 00:33:53,000
She's got people to kind of look up to to see how they how they deal with it and how they cope and how they progress.
00:33:53,000 --> 00:34:02,000
And I wondered what. If you had any thoughts about that kind of that culture in academia, about the culture of support,
00:34:02,000 --> 00:34:08,000
but also that kind of culture of role models that we don't necessarily have.
00:34:08,000 --> 00:34:15,000
Yeah, I think it's difficult. And I'm the same. I don't know in person anyone my age with my condition.
00:34:15,000 --> 00:34:20,000
Yeah. And even just in the UK support networks, I found
00:34:20,000 --> 00:34:26,000
They tend to be the children are much older. Yeah. And it's a difficult thing to come to terms with.
00:34:26,000 --> 00:34:32,000
But like I said, I've had the privilege of being able to access research papers that help mitigate some of my concerns.
00:34:32,000 --> 00:34:38,000
And I have an incredibly supportive GP. She is wonderful. But yeah, it's hard.
00:34:38,000 --> 00:34:46,000
I mean, I think particularly in academia, I'm I'm very open about it because it's not going to change me.
00:34:46,000 --> 00:34:53,000
And yes, there's always a concern that that may come around and potentially be used against me later on.
00:34:53,000 --> 00:34:57,000
But I think that's a risk I'm willing to take, because actually, since I have been more open.
00:34:57,000 --> 00:35:04,000
Other people have confided in me more and people feel more open and more willing to come and chat to me,
00:35:04,000 --> 00:35:09,000
even if they don't necessarily have a disability and might need some help navigating a process.
00:35:09,000 --> 00:35:12,000
And I've been there and I've done that. And particularly friends again,
00:35:12,000 --> 00:35:21,000
who are dealing with new diagnosis that the paperwork is hard and sometimes it's just having someone to hold your hand through that process.
00:35:21,000 --> 00:35:28,000
And yeah, I think you're right, there is a culture about it. And I honestly think unless people speak more openly about it, that's not gonna change.
00:35:28,000 --> 00:35:33,000
Then I'm say I'm I'm very aware that I have a privilege, that I feel that I'm able to do that.
00:35:33,000 --> 00:35:36,000
And, you know, everyone is able to do that. I feel it broadly.
00:35:36,000 --> 00:35:44,000
The the team and the government is incredibly supportive and welcoming, and I feel safe enough to do that.
00:35:44,000 --> 00:35:51,000
But you're right that this culture needs to be challenged and it can't be isolating if you don't have anyone who's gone through it.
00:35:51,000 --> 00:35:56,000
And in all honesty, if it was for the fact that I have a very good friend, that I made her undergraduate,
00:35:56,000 --> 00:36:05,000
who we struck solidly campaigns for equality and equity for disabled people and has done throughout her career and and still does.
00:36:05,000 --> 00:36:14,000
Now, I'm not sure things would have been as easy for me and I wouldn't have been so assertive in making sure my accommodations were made.
00:36:14,000 --> 00:36:19,000
And I think as sometimes you do kind of have to throw out the rulebook and not be
00:36:19,000 --> 00:36:23,000
afraid to pester people when they should be doing something and not be afraid to even say,
00:36:23,000 --> 00:36:28,000
well, OK, can you give me an update on that? So when is this happening? Can you please give me a progress update?
00:36:28,000 --> 00:36:33,000
And yes, that's again, taking extra time. But unless you know.
00:36:33,000 --> 00:36:38,000
But this podcast I think is great because we are talking about it and it's giving people, I guess,
00:36:38,000 --> 00:36:47,000
a platform to realise that there are other people who are kind of going at the same thing, that there is a shortage of disabled role models in academia
00:36:47,000 --> 00:36:51,000
I do wonder sometimes how how do I know I'll be able to stay in academia?
00:36:51,000 --> 00:37:00,000
This is an assumption that these students are single, able bodied, have no caring responsibilities and can just up and move.
00:37:00,000 --> 00:37:06,000
Yes. The thing you're saying now about, you know, two sides lecturing things, saying about privilege is really key
00:37:06,000 --> 00:37:17,000
And I see lots of points because. One of the things that we do have in academia is more flexibility than other professions perhaps do.
00:37:17,000 --> 00:37:28,000
And I do feel more much more comfortable being open about my medical problems in an academic environment than I think I would in an industry,
00:37:28,000 --> 00:37:35,000
because there's a level of. I'm trying to think about how to phrase this
00:37:35,000 --> 00:37:38,000
00:37:38,000 --> 00:37:47,000
People aren't understanding and aren't supportive because of the kind of environment we're in, there's at least a perception that people should be.
00:37:47,000 --> 00:37:57,000
Yeah. And so that feels like a protection because I sort of think, well, if I'm open about it and you do discriminate against me.
00:37:57,000 --> 00:38:08,000
You can't do that. And I feel like I feel like I have more, more, more power in that situation than I would do in other roles in other industries.
00:38:08,000 --> 00:38:17,000
But, you know, the lack of role models and the lack of seeing people kind of doing things differently and working flexibly at a more senior level.
00:38:17,000 --> 00:38:22,000
It's a concern. Yes, absolutely.
00:38:22,000 --> 00:38:26,000
And I hear what you say about academia somewhat because of its nature.
00:38:26,000 --> 00:38:33,000
I think because of the way we challenge our assumptions, as you do in research, means that you're right.
00:38:33,000 --> 00:38:36,000
Even if it's not happening, there's a perception that it should be.
00:38:36,000 --> 00:38:41,000
And I do worry, especially when I go for a job, interviews and things which I've not done for a while.
00:38:41,000 --> 00:38:48,000
But when it came to me graduating, I would never apply for a job that didn't have flexi time in the job description
00:38:48,000 --> 00:38:53,000
And that's just a thing that I have to accept that I need it. And if they're not having it in the job description.
00:38:53,000 --> 00:39:00,000
I know I have to have to fight tooth and nail for it. And it's not a fight I'm willing to have.
00:39:00,000 --> 00:39:04,000
But also, when I go for various jobs, there's someone. Do you have any questions?
00:39:04,000 --> 00:39:08,000
Oh, yes. Well, how supportive of you about working time? What's your sick policy like?
00:39:08,000 --> 00:39:14,000
Do you have X, Y, Z? But there's always a worry that if you start asking these questions, they're gonna be.
00:39:14,000 --> 00:39:21,000
They're going to say something along the lines of, oh, this person seems more trouble than they're worth.
00:39:21,000 --> 00:39:28,000
It's always a worry, isn't it, that as soon as you start talking about it, people don't understand.
00:39:28,000 --> 00:39:33,000
And misconceive what it is you're saying. But I think there's also.
00:39:33,000 --> 00:39:36,000
A movement is that's broadly trying to be more inclusive and saying these people
00:39:36,000 --> 00:39:41,000
have just as much to give and have just as much attention as able-bodied people.
00:39:41,000 --> 00:39:43,000
We're just not giving them tools of which to do it.
00:39:43,000 --> 00:39:52,000
Like, for example, I've discovered using my screen reader as a sort of audiobook allows me to engage with materials on days.
00:39:52,000 --> 00:39:57,000
And previously, I don't feel like I would have been able to achieve much because I couldn't sit at my computer.
00:39:57,000 --> 00:40:04,000
I saw something someone tweet the other day about actually that some like journal companies like Tayler and Francis,
00:40:04,000 --> 00:40:10,000
they have read aloud functions on the journal articles. This is kind of.
00:40:10,000 --> 00:40:15,000
This has completely changed my life, discovering this two days.
00:40:15,000 --> 00:40:23,000
It's really small, really tiny thing might seem really insignificant people, but all the impact that's going to have.
00:40:23,000 --> 00:40:32,000
Yeah, I think it's wonderful. But I also think that the onus needs to be on institutions to make sure that particularly you're having to use software,
00:40:32,000 --> 00:40:36,000
which is big, it's clunky, it takes a lot to run.
00:40:36,000 --> 00:40:40,000
You have computers that can adequately run it. Yeah.
00:40:40,000 --> 00:40:44,000
But, yeah, I think, you know, these little things, though, are starting to make things easier.
00:40:44,000 --> 00:40:49,000
And the thing is, they don't just make things easier for people with disabilities either.
00:40:49,000 --> 00:40:58,000
Yeah. Yeah, exactly. And I think there needs to be a change in the perception that changing one thing doesn't mean that you're erasing history.
00:40:58,000 --> 00:41:04,000
So is the analogy isn't this people say, oh, what? You need to understand why it was there before we start changing it.
00:41:04,000 --> 00:41:10,000
And I'm sorry, but I don't need to understand why the steps were there to know that some people need a ramp instead.
00:41:10,000 --> 00:41:19,000
Yeah. Like it's 2020. We need to stop prioritising architecture and history and tradition over people.
00:41:19,000 --> 00:41:25,000
Oh, that's. That just needs to be a mantra for everything is just.
00:41:25,000 --> 00:41:31,000
Yeah. Just move for me to think about ending on a slight positive note.
00:41:31,000 --> 00:41:35,000
Well, what I kind of like what are our hopes for the future?
00:41:35,000 --> 00:41:43,000
No, we you know, we're up we're at a moment of change in the world in so many, many ways.
00:41:43,000 --> 00:41:51,000
Well, what do we hope the world you know, if we we were to kind of talk about our post COVID
00:41:51,000 --> 00:41:57,000
accessible, inclusive world of academia, what would that be like?
00:41:57,000 --> 00:42:01,000
Oh, I think definitely what I mentioned about geography earlier.
00:42:01,000 --> 00:42:10,000
I think we need to stop particularly in academia simply because you've moved around a lot, but that's really important.
00:42:10,000 --> 00:42:19,000
And especially now we've got all these wonderful tools for collaboration with different institutes and we're able to engage much more online.
00:42:19,000 --> 00:42:28,000
We wouldn't have before. I don't necessarily think it as needed as before because I think you get that exposure to new ideas and concepts and teams,
00:42:28,000 --> 00:42:33,000
perhaps not in the same way as you would by moving them. You still get more exposure anyway, way we didn't even 50 years ago.
00:42:33,000 --> 00:42:37,000
Yeah. So hopefully geography becomes less of an issue.
00:42:37,000 --> 00:42:44,000
I think definitely, like you said, the removal of the toxic culture know the normalising of work life balance.
00:42:44,000 --> 00:42:49,000
And it's something that I particularly found when I've been to open days and things and the oh, what's the work life balance like?
00:42:49,000 --> 00:42:56,000
People are shocked that someone in that. Well, I guess now mid 20s is prioritising that.
00:42:56,000 --> 00:43:03,000
And I think changing the idea and this does affects everyone is so, you know, people with children with caring responsibilities,
00:43:03,000 --> 00:43:10,000
that career academics are completely unattached and have that freedom is really important.
00:43:10,000 --> 00:43:16,000
And just making it a more open culture in which we can talk and support each other.
00:43:16,000 --> 00:43:25,000
And the difference is, I used to help improve life for everyone and improve your research rather than used to disadvantage you.
00:43:25,000 --> 00:43:33,000
Yeah. And I think we're at a point where because of the way things have changed with COVID, that it can happen.
00:43:33,000 --> 00:43:41,000
Yeah, I read. Yeah. And I do think this, you know, like like you were saying earlier, I think at the moment there are clear.
00:43:41,000 --> 00:43:50,000
Issues around accessibility, where the kind of COVID measures on making buildings and systems less accessible, sensible people.
00:43:50,000 --> 00:43:51,000
But in the long run,
00:43:51,000 --> 00:44:00,000
the trend of change in the way of working and the change in people's attitudes feels certainly feels like cave it has brought into the workplace.
00:44:00,000 --> 00:44:07,000
Might lead us to a more positive shift and an understanding that that positive shift will benefit us all.
00:44:07,000 --> 00:44:11,000
Yeah. I think so, and I hope that people are starting to realise that.
00:44:11,000 --> 00:44:16,000
I think broadly people who've.
00:44:16,000 --> 00:44:22,000
who come from a place in the pandemic where they've had their own home and they have not had to worry financially.
00:44:22,000 --> 00:44:29,000
Have in some ways appreciated the chance to slow down and spend that time with their families, even if everything else has been incredibly difficult.
00:44:29,000 --> 00:44:34,000
And I realise that I fall into that category. I'm so grateful that, you know, my income is stable and I.
00:44:34,000 --> 00:44:38,000
I have my own little place with my partner. We have a garden.
00:44:38,000 --> 00:44:44,000
So for us, you know, spending that time together was great even if we struggled with the rest of the world.
00:44:44,000 --> 00:44:49,000
And I think that people are prioritising their work life balance and their families.
00:44:49,000 --> 00:44:57,000
And I just hope as well with with architecture, things like we were talking about doors earlier now touch and contact is an issue for everyone.
00:44:57,000 --> 00:45:02,000
There's no reason to have not to have electric systems to keep the doors open. And they shut automatically
00:45:02,000 --> 00:45:07,000
When the fire alarm goes off and little things like that, when I start to consider our hope become a normal,
00:45:07,000 --> 00:45:16,000
particularly when considering new buildings and refurbishing them, I really hope the priority is to have a say, a disabled person on the committee.
00:45:16,000 --> 00:45:21,000
So I think a lot of things are not wilfully ignorant. It's just cause, you know, inexperience.
00:45:21,000 --> 00:45:26,000
And I'm hoping that the more academia embraces diversity,
00:45:26,000 --> 00:45:31,000
the more we can have open conversations about these things to make sure that that's not the case.
00:45:31,000 --> 00:45:38,000
Thank you to Megan for taking the time for such a candid and thought-provoking conversation.
00:45:38,000 --> 00:45:43,000
I wanted to end on the positive note because I do think we're at a tipping point.
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We're at a point where things could get a lot better for accessibility for
00:45:49,000 --> 00:45:53,000
disabled and chronically ill people in higher education and all walks of life.
00:45:53,000 --> 00:46:03,000
And indeed, in doing so, I do firmly believe and there's an awful lot of evidence to suggest that in in systems being more accessible for disabled people,
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they'll be more accessible for everyone. And that's it for this episode.
00:47:33,000 --> 00:47:34,000
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00:47:34,000 --> 00:48:03,073
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