Disability accommodations since Covid-19 with Jennifer Leigh

(upbeat music) Welcome to the American Campus Podcast, a history of higher education. I'm Lauren Lesabb-Cheppard, and on today's episode, we're discussing disability and ableism in the academy. I'm happy to welcome Jennifer Lee, honorary professor at the University of Liverpool, and a reader at the University of Kent, who has written extensively about ableism in higher education, especially in the STEM fields. Professor Lee, it's such a pleasure to have you. Can you give us a historical overview of ableism in academia? - Yeah, so this book came into being primarily through work that I did with Nicole Brown, who was a PhD student of mine, and she works at UCL, University College London. And my interest in ableism came from personal experiences. I'd always, my background was that I was a chemist from my first degree. I then started a PhD left. When I was pregnant with my first child, no, I left when I was pregnant with my second child. I had my first one, I was an undergraduate student, and by the time I left that PhD, without finishing, I should say, I had experienced quite a lot of the barriers. Most of the barriers that might not, the underrepresented groups facing STEM because of being a woman, because of disability, because of being a parent, it was just really, really challenging. I changed that completely. We trained as a yoga teacher in a Smattering Movement therapist, and then ended up doing a PhD in education at the University of Rohampton, and looking at children's experiences, how they reflected and processed their experiences through embodied movement. Then went into higher education, and kind of went a little bit full circle in exploring academic identity, and then kind of coming back to marginalisation, and marginalisation through ableism, which is discrimination against disabled people, but also other kinds of marginalisation, because everything is intersectional, as we know, you're not just one facet of your personality. The ableism book came out of an event that was held in 2018 on ableism in academia, and there was that book, and then Nicole also edited another book, which I contributed to, which was lived experiences of ableism in academia. And then since then, I've developed it much more around STEM and science, because there's a lot less work around disability and inclusion in science. Quite often people think that disability is something that just students have, rather than staff. There isn't really much consideration of disability for staff in academia generally, but particularly in science, where you find that the lowest rates of people sharing disability are in subjects where there is a really bad gender portion. So in science subjects where you've got a lot more men, then women there's also a lot less sharing of disability. And I have since been lucky enough to co-lead the National Association for Disabled Staff Networks, and Edson's STEM Action Group together with them, and we've actually just authored a white paper, which is going to be released on the 31st of March, with recommendations for funders and institutions and policy changes to work towards a more fully inclusive environment for people in STEM. - Wow, that is so fascinating about the connection between gender and disability. Can you talk more about that? - Well, as gender is race and ethnicity and disability, because I was looking at the stats today, and I don't think they had the full breakdown. But so in academia, less than 1% of applications for research funding tend to come from disabled women or disabled men, and then that same proportion to get funded. And it's the same for black women as well, so at applicants and successful awardees. And you can compare that to, if I get this round in the right way, 70% of applications come from white men, and 74% of successful awards go to white men. So we can't just look at disability and isolation. We have to look at it in the context of other barriers, like race, ethnicity, but also whether you're a first gen, so if you're the first in your family to access higher education, because all of these things will contribute. So if you're first gen and disabled and black and a woman, your chances of thriving and succeeding in academia, particularly in science, are going to be much, much smaller than if you did not have all of those characteristics. - And I imagine that's an international phenomenon too, right? Even if the numbers are slightly different, the trends are still the same. - I would have thought so. I don't know the details of awards and funding in the States, but I mean, I know that generally, if you look at the proportions of women, they tend to leave post-PhD. So when I left science, I was during a PhD, but I'm still a statistic of someone who technically left science, although that's a whole other conversation about whether I am still a scientist or not. I'm a full member of the Royal Society of Chemistry, but I don't know. Am I a chemist? I don't know. I do work in chemistry. I've published in chemistry journals. Top chemistry journals, but I don't necessarily identify as a chemist, and I'm not necessarily seen as a chemist by many people because my work is around research culture and research environment that it is about doing bench chemistry. But in America, I think it's the same that you've got a much lower proportion of women, a much lower proportion of disabled people. I believe the American Chemical Society in its last report didn't even mention disability. Mention gender, mention race, didn't even mention disability. And it's quite often like the forgotten cousin of EDI or DEI characteristics. - And do you think that's because people are not self-reporting or because they don't exist in these spaces? I'm sure it's a combination of both, but maybe do you have a larger theory about that? - I mean, when we talk about disability, we often use words like disclosure, or we declare a disability. And these are kind of words that we also apply to things like you disclose or you declare a criminal record. So we're kind of treating it as though it's something shameful that we don't want to admit to, that we shouldn't actually have. But I think it's really important to be aware that if you are disabled or chronically ill, you also have to kind of come to a point of acceptance of that yourself. And anyone can become disabled at any point. You might be born with it. You might acquire a disability or you might become chronically ill. But I mean, to take that as an example, you don't start off by being chronically ill. You just get ill and you think you're gonna get better. And the point where you just, you have to accept that this is your new normal can take a very long time, but you have to accept that before you can start telling other people, we live in a society where disability is seen as something that we should be ashamed of. That is subject to so much stigma and prejudice that admitting that you are disabled can make you seem vulnerable. It can make you be vulnerable. You can lose job security. You can lose the chance of progression because people will make assumptions that you're not capable in the way that you know that you are. There can be assumptions about the kinds of jobs that you should do or the kinds of work that you're capable of. And it's that conversation about the numbers of disabled people as students versus those as faculty and what you see as it decreases and decreases and decreases. Partly that can be because as a student, you might get extra time or you might get support. But if you're a member of faculty, you won't necessarily get any extra time to do revisions to a paper or it's okay, you don't have to apply for research funding because it takes you three times as long to walk to a lecture theatre so therefore you don't have any time left to apply for research funding. So you have to weigh up the risks and the benefits to you before deciding to share that. And I'm very consciously using the word sharing a disability rather than disclosing or declaring. And I imagine there's probably a major COVID factor like in recent history if you mentioned everybody at some point will be disabled even if it's temporarily. It's something that we will all experience in our lives. And I've seen in numbers in the US after COVID, especially with long COVID, the way that COVID intersects with other illnesses. Can you talk about the effects since 2020? - Yeah, so it was really interesting. I mean, there was a huge pushback in the UK definitely that was against disabled people with when we were, deaths were reported online. They were talking about had, they already had a kind of phrase that they used, but that they already had an existing condition as they that made it okay that they died. People had do not resuscitate orders placed on them without their knowledge and without their consent just because they were disabled. And again, there's this assumption of how much your life is valued and how much your life is worth, especially at the beginning when no one really knew what was happening and we didn't know how to treat COVID or didn't know what to do. If you had to choose between giving a ventilator between someone who was able-bodied or someone who was disabled, then I guess they didn't tend to go to disabled people. It seemed like a bit of a win for the disabled community when everyone pivoted, that's the word, it was to promote working and especially in universities, remote teaching because suddenly the kind of adjustments that disabled people, many disabled people have been asking for, so to attend things, to have hybrid meetings, to be able to deliver content online, that allow them to manage their conditions, we're suddenly available for everyone. So whereas it always been too much, too expensive and not at all possible, suddenly it was there and we were all doing it now. We're talking online in a way that people wouldn't necessarily have done before, it would have evolved a flight or a meeting or a travel. And I think since then there has been a bit of a pushback. I think the return to normality, which I don't know how much that was emphasised in the US, but over here there was a definite push against having online things and meetings and how much better things are in person. And unfortunately, that definitely did mean that some disabled people who had, for example, remote working as part of the adjustments, that was no longer allowed either. And students as well, they were no longer allowed to tend online, even if it suited them for other reasons than not the perception that they're just lazy and can't be bothered to come in. Since then, I think it's been mixed. We've got definite changes in attitudes towards disability. In the UK, there is a situation at the moment with a government award, which is called Access to Work, which seems to have changed without any public knowledge. And again, very ableist assumptions about the disabled people should only own a 13 pounds an hour, which isn't very much in the UK, even if you translate, I know, wages are higher in the US, but it's still not. I don't know. I don't know. But this kind of assumption of the kinds of work that you should be doing as a disabled person, and this is for any kind of neurodivergence or disability, and a kind of reaction against mental health, as well as long COVID, there were a lot of mental health effects from COVID. And the world, I think, is still recovering from what we went through. And as an educator, a parent of a 10-year-old, I think we're going to keep on seeing those long-term effects of COVID as we go through for many years, because we just don't know what is done to our children to our young people, as well as to ourselves. But there seems to be a push particularly against mental health as an issue, or even recognizing that as a disability now, and using it instead to punish people. So you just need to be more resilient and get over it, which doesn't necessarily help. No, I imagine that makes it much worse. And I would love to stay on this topic about mental health, because I feel like, from a US perspective, we certainly did have that demand for returning to I'm using scarequets here, but normalcy, like returning to work, everything back in person. But I saw that in the US as almost pitting mental health against other forms of disabilities. And so here's what I mean. There was a justification that the lockdowns themselves were causing anxiety, causing depression. And therefore, we needed to stop with all of the remote accommodations and all return to work in person. And so I think that's a very interesting dynamic, pitting mental health against-- well, and for some people who do struggle with mental health issues, having an online ability to access your work or access class is actually a helpful accommodation there. So I'm not sure why these things are at odds. And then another trend that I've noticed in the US is especially our learning management systems, and a lot of our ed tech, our disability washing justifications for neoliberal practices. So for example, having faculty record our lectures to make them be available for students, but also these ed tech companies are keeping copyright of our-- or having the intellectual property over our lectures, and they're training AI models off of them. So I wonder-- and I'll just lay it out a few different directions we can take this conversation. But I'd love to hear your thoughts on any of that. Yeah. I mean, I think-- yeah, I think people definitely-- some people's mental health definitely did suffer because of isolation. And I think there is a correlation between disability being disabled and having mental health issues. But often that is because your disability isn't being accommodated, which is incredibly distressing. I mean, we haven't even talked about neurodivergence. And whether that should be-- I know a lot of people include that as a mental health issue, which I don't think is OK, because it's a difference. It's not a disease. But in terms of ed tech, I mean, wow, et out in the UK, I think genuinely universities would hold the copyright for recorded materials, rather than ed tech companies. I teach a module with a colleague, Sharon Affitton, on education in the global world. And I'm definitely going to make a note of that, because that sounds very scary to think that students will have lectures trained on AI, especially when we know that AI isn't actually intelligent. Yeah, and it gets things wrong, and it makes mistakes. I'm not saying academics won't make mistakes, but we tend to admit them and have more knowledge of what we're talking about than just associating words, because they happen to come close to each other. Oh, no, that's quite scary. I mean, I think there's a whole lot of issues. And underneath it all is this kind of looking at disability and illness and difference as something that is subhuman. And not worthy of humanity or the same kind of respect or opportunities as people who are able-bodied and near-typical. I also wonder too. We were talking before we started recording about some of the differences in the social sciences and humanities versus STEM. And of course, these problems extend across all of the fields, but it does seem to be really noticeable in STEM. And I wonder if there's like a, almost a eugenics history there? I mean, maybe. I'm not sure if eugenics might be giving it more conscious thought than it is. I think it is in STEM. The belief in meritocracy is so strong. And if you think about the traditional scientific method where people-- you write about everything in the third person passive tense, the test tube was mixed, it takes away any human agency. Or the fact that actually you can give two people the same chemicals in the same lab environment and one will manage to do a successful synthesis in the other world. It's a bit like baking. There's a certain element of who you are and how you do things as much as there is about protocols and things like that. So there's a lack of awareness. And while so many of the senior people in science have benefited from the way things are, if you look at the record of Nobel Prize laureates, for example, I think in the physical sciences, there's no black winners at all. I don't know if they're recording or disability. It's probably-- I don't even think it's a characteristic worth mentioning. And I think it's 12 women. It might have gone up. I can't remember the last time I checked the stats. But not very many women either. And we know that intelligence isn't-- it's not so biased as that. We know that you get just as intelligent men and women and disabled people and people of any race or ethnicity. So what's going on with the system that only rewards people that look the same? And there was an interesting study that came out which looked at the financial background of Nobel Prize winners. Basically, the most-- I think the best thing you can do, if you want to win a Nobel Prize, is to be rich and to have rich parents. And that will give you the best chance of success. I think it was slightly less in the US at that point. You had slightly more chance of not being quite so rich and still getting one. Probably still have to be a white man. But I don't think-- I don't know if they looked at those characteristics. And I think it is that it's the lack of awareness more than anything. Scientists are taught to follow protocols. We're not necessarily taught to reflect or to be self-aware. If you use words like privilege in front of a rim of scientists, don't-- I've done it. Well, I do not recommend. Because they don't-- they're not familiar with the same terms. Whereas the people who are familiar with them in social science or in humanities, where we do a lot more reflection. We are a lot more aware of positionality in research. Are completely unaware of the barriers in science, but also the way that you learn in science. So in science, you're not really expected to be able to contribute original thought as an undergraduate or even as a postgraduate, or maybe even to lead on a couple of postdocs. And only then would you start working your way to becoming an independent researcher, whereas in social sciences and humanities, we're training our undergraduates to be contributing critically and originally from day one. So it's a completely different system. And then you add into that the kind of hierarchy in science where you would be part of a group for much longer. And then whether you progress or succeed is going to be a lot down to the research culture and research environment in that group. And then you add in a lack of awareness about bias and barriers and a belief in meritocracy. And you can start to understand potentially why there are so many barriers for disabled people, for any group that is underrepresented. And I believe in the latest raw society of chemistry survey, they look to the proportion of disabled people and chemical sciences. And they tend to, if they go into undergraduate, they tend to leave afterwards. And you can't become a scientist unless you've done more study. You just can't do it. And that study is very often dependent on someone else believing in you and taking that chance on you, which doesn't necessarily happen. If you don't fit their idea of what a scientist should be and what they should look like. And I imagine your own belief and your ability to thrive once you enter a graduate program. I think it's not just about your own ability to thrive. It can be about literally having an inclusive environment to do that in. So I've done quite a lot of work around accessible labs. You might find more accessibility in a teaching lab. But if you don't even see the possibility of it in a research lab, you're never going to perceive that as an environment that you could be part of. So a lot of the work that we do is about building things in. But also looking is very expensive to retrofit in accessibility. But one of the most cost-effective ways is to have lab technicians. So you don't have to worry about overcrowding spaces and storing solvents under benches so you can't sit down or have a wheelchair underneath because the spaces at such a premium, it's all shoved up. If you store those solvents together, then you can address health and safety issues. But then also how. someone who brings them to you in more manageable amounts. So if you don't have as much physical strength, for example, you don't have to worry so much. Or if you cannot reach an enema machine, because it tends to be quite high, you've got someone who can run that experiment for you or to run it remotely so that you're still in control of the science, but you don't actually have to be there and do the physical things that you find challenging. But until that is normalized, it's really, really difficult for people to see that there's room for them. A friend of mine, Hamid Haroon, who is and he's incredible, he's the chair of Nadson. One of the chairs in Nadson, his son recently was told, I think he had to give up chemistry at level because they couldn't accommodate him. And it's like we're still getting young people told right at very, very early stages that science isn't for people like them and that's not okay. Yeah, the messaging, the being aware of the space that you would be working within. I guess that's what I was thinking when I was saying, if you don't believe in your inability, not that you can't do it, but you have physically seen the conditions of the room and you know that it's not designed for you. Thank you for bringing up the study about the Nobel prize winners and their demographics. And I'm familiar with the study and I want to say, I hope I'm not creating this memory. I'll find it and I'll link it in the show notes. But I want to say that there's also a correlation between not just your parents' wealth but your parents' education. Like your parents themselves also had either an advanced degree or a college degree at all, which if you're thinking, okay, so the prize winners in the 90s, a generation before their parents would have been born in this decade. Well, what did higher ed look like? It was all white men in that time period anyway. It's really like, literally, before we talked, I'm working on the revisions for a paper that will hopefully come out in chemical science if I write the revisions right, which is looking at first gen experiences, but looking rather than just looking at that transition into university, it's looking at the impacts throughout their career. And it's absolutely fascinating. I hope it comes out soon because people aren't looking at that or they're just not aware of, you know, everything is focused on that transition into university, but that doesn't help us create first gen scientists that are successful throughout their careers because we're not necessarily acknowledging all the barriers that they carry on having. And if you come from a family where your parents don't have education, if you don't have that capital, then you don't have it, but you don't know what you don't have. So the book that I'm working on when I'm not doing the paper revisions is a toolkit for flourishing and science where we're kind of trying to put together that hidden handbook of, you know, what do you need to do to succeed in science PhD? What comes next? Like, you know, what even is the fellowship and looking at options in academia and outside of academia and science communication and impact so that you can be aware of these things when you start in a way that other people aren't or a way that other people are, but you don't know how they are if that makes sense. Yes, that insider knowledge is so helpful. I wish not that I ever went into a STEM field. I think I the highest I ever scored in a science class is probably a B in college undergraduate. But it would, you know, for any field, it's so grateful to have those handbooks. And yeah, off camera, you mentioned to me, those things do exist in the humanities and social sciences, but STEM is lacking. Yeah, well, because most of the people who work in educational development or academic development are social scientists and most of the people who write about it are social scientists and they write about social science. They write about what they know. I think people like me who have a background that spans science and social science and most of my methods are autistic and creative. I'm very interdisciplinary, which is why I don't fit anywhere. They're very rare because, you know, you talk a completely different language and I'm not saying that I don't ever find the scientists misunderstand me because I do believe me, but at least I'm much more aware or tuned to the ways that they might think than someone who hasn't even perceived that there could be a difference. The idea that things are maybe a little bit relative when it comes to the social seems to be a bit foreign. There's one other thing that I'd like to explore. You were talking earlier about how undergraduates are taught to think within a certain frame, right? Not to be creative, not to be overly critical or even, you know, revolutionary in their thinking until they get to maybe the doctoral level or beyond. And I'm just thinking since we were discussing the Nobel prize, I mean, those prizes go to people who do think outside of the box, right? They discover something that's revolutionary or maybe I'm getting this wrong. I don't know. What are your thoughts? Oh, I'm not trying to say that science doesn't teach people to be critical because it does. You do need to be critical, but as an undergraduate, the vast majority of what you'll be doing is learning stuff. And it's one of the reasons why there are challenges and when it comes to decolonising the body of work because you learn stuff and you tend to learn stuff that is written by textbook in textbooks or written in journal articles. Normally textbooks to be fair for undergraduates and science, which tend to be written by senior academics in the field who have succeeded through the system as it is and lack diversity. And you can't necessarily change what a boiling point is or what a melting point is. You just have to learn it. I think science and some places are doing a really good job of trying to look at, okay, so why are accepted bodies of knowledge coming out more from the West and from the, you know, America, the UK and Europe than the global South? What is it about different types of knowledge that we need to be aware of? What do we need to be aware of when it comes to bias in publishing? And trying to, if we can't present a body of work, you know, it's not like English where we can just change out one play for another play and get students to study that instead. But we can get them to think about what the implications, you know, in terms of like health inequalities, for example, like look at what are the implications of having a scientific workforce that are that look the same and don't necessarily think about things in the same way. We know, you know, this has huge impacts for gender, as well as disability, as well as race and ethnicity. I mean, I think the innovation thing, I believe there's a much higher proportion of disabled people go on to become entrepreneurs and innovators than non-disabled people and it's probably because they have to be problem solving throughout their life that they have those qualities. But if they're not allowed to thrive in science, then we don't get those in science, which is a shame because then, you know, science misses out. But I think it's, it's really difficult because it's very difficult to succeed if you're different. You have to have someone who will sponsor you, who will believe in you or who will fund you and that's what it comes down to. Money quite often. And people often like things that fit, you know, like this is a successful bid model, your proposed bid on the one that we know is successful and like into disciplinarity, we, you know, let's have a chemistry, biochemistry collaboration. We don't really want social science and chemistry because that's just a bit weird. And we don't know how to, we don't know how to judge its merit. So I think the innovation and the disruptors, I mean, we haven't really touched on neurodivergence, but I would love to be funded to do a study to look at the proportion of, or the correlation between neurodivergence and interdisciplinarity because I reckon there's much, much higher proportion of neurodivergent interdisciplinarity academics than you would expect. And then, you know, interdisciplinarity work is really hard to, to get funded or to get taken seriously because you're kind of often never quite enough of anything to be considered like an expert, you know, or excellent. And that's what you need to demonstrate. But yeah, finding people to fund that kind of work is a little bit challenging. Well, it's an important point that you make that, I think you said, science misses out. It just sort of points to the absurdity of things like ableism and racism, you know, all the other isms and obias. Like, it's a problem for everyone, even the people who benefit from existing structures, they miss out on the knowledge that could be there. Yeah, because we're not picking from like the best 100 people, we're picking from a much, much smaller pool of people. If we're kind of filtering out people on the base of their gender or their race or their disability or neurodivergence, you know, we're just, we're not able to choose from as large a pool. Well, Professor Lee, thank you so much for this conversation. And perhaps I can have you back for the toolkit book. Absolutely, yeah. And so my final question for you, I like to ask all guests, what are they reading now? So any book wrecks for us? Octavia Butler, I grew up reading science fiction in Isaac Asimov, which is partly why I struggle with all of the issues around AI, because surely we just implement the laws of robotics, like, that's sorted. And came across Octavia Butler much more recently and don't really know why it took me so long, because although, you know, she started writing in the 70s, if not earlier, her right, it's so fresh and relevant to today's society and it's just lovely to read science fiction. I think some of it borders on, you know, its world building and different worlds. But yeah, she's an incredible writer, so anything she's written pretty much. Well, thank you so much, Professor Lee. It was wonderful to talk to you. Thank you for your great work. And of course for listeners, like I mentioned, I'll drop a link to Professor Lee's website, so you can keep up with her work and we'll look forward to the forthcoming book. So for listeners, if you enjoyed the episode, be sure to subscribe, share with colleagues and friends, and leave a review. Thanks for listening to the American Campus podcast. [BLANK_AUDIO]