Cripping Research Culture Podcast

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Hi, it’s me, a disabled researcher. I heard you wanted to learn how to “make better working conditions for disabled staff in higher education”, so I interviewed a few people. Join me as I talk to recruitment professionals, scholars, impact leaders and many more on Cripping Research Culture, a new podcast by the Wellcome Anti-ableist Research Culture project at the University of Sheffield. Subscribe now to Cripping Research Culture wherever you listen to podcasts so you won’t miss a single episode.

Episode 1: Inclusive Creative Methods with Nicole Brown

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Nicole Brown: So I do also advocate for creative analysis or embodied analysis, so it’s not just about the data generation phase it’s also about, “OK, as researchers let’s tap into our own gut feeling and our own things and let’s have a look as to what the research data tells us and harness that”.

Élaina Gauthier-Mamaril: Hello and welcome to Cripping Research Culture, a podcast where we ask the question “How can we make better working conditions for disabled staff in Higher Education?”

My name is Élaina Gauthier-Mamaril and I will be your host. I am a light skinned Filipinx woman with short, dark, curly hair. I am also a Research Associate on the Wellcome Anti-ableist Research Culture project at the University of Sheffield where I am developing recommended actions to improve the inclusion of. and respect for, disabled staff. Today I am joined by my colleague, Daniel.

Daniel P. Jones: Hi, I’m Daniel P. Jones and I’m a white man with brown hair and glasses. Alongside Élaina I am one of the Research Associates on the Wellcome Anti-ableist Research Cultures project. In my work I focus mainly on inclusive research methods innovation, and producing guidance on the running of accessible events. As disabled researchers ourselves, the inclusion of disabled people in our ways of organizing, analyzing and generating knowledge, is more than theoretical.

Élaina Gauthier-Mamaril: We hope you will join us for the next 8 episodes as we ask our colleagues about the practical steps we can take to make research culture anti-ableist. Make sure you stay til the end for our Crip Corner segment.

Daniel P. Jones: In today’s episode we talked to Nicole Brown about her use of Creative Methods in research.

Nicole Brown: Hello, thank you very much for having me and for inviting me to this podcast. My name is Nicole Brown. I am Associate Professor at University College London. I am a white woman with rather messy hair, they are curly so it’s always whatever they do rather than what I want them to do. I’m just really excited about having this conversation with you.

Élaina Gauthier-Mamaril: Creative Methods usually sound like a good idea for participants. It can be easier to talk about sensitive subjects while working with your hands for example, and sometimes you don’t need to talk at all to express yourself. But this doesn’t mean that Creative Methods are easy or straightforward to use. From a researcher’s perspective we asked Nicole about the tensions of using Creative Methods within the framework of traditional research protocols, including ethics processes.

I’ve been in situations and I’m a researcher where we do a zine activity as part of our research, and then on the fly they’re like “OK, well you don’t have to share it with anyone” or “we don’t have to take pictures of it”, “but if you want, like do it this way”. And I just felt like that felt a very like rushed, consent process, and like in front of everybody, where everyone is like “I’m fine sharing it with everyone”. And so like, yes in theory they tell you you can opt out, but it felt very much like “well I’ll do the polite thing and let the researcher take a picture of it”.

Nicole Brown: That’s really interesting and I agree with you that, you know there is obviously an element of peer pressure in that kind of situation already. So I have done that kind of activity as well where I’ve had like an ‘art workshop’ I called it. And it was a data generation activity – and you notice I’m talking data generation rather than data collection, because basically in that art workshop what I did was, I said to people that we would be generating the kind of information that I need in order to basically progress in my research and to respond to my research question, to answer my research question.

But what I did was, I did actually have that conversation before the workshop. So in the workshop everybody had already known where they were and where they stood and what the aim was. Also, what was also interesting is the art workshop itself was quite open in the sense that I literally just had like a massive table with loads of art materials thrown out, so it was actually quite a messy room.

And then I basically just said to people “when you come to my workshop there will be loads of materials there, go and do whatever takes your fancy to express the experiences that we need to have expressed, and use whatever materials there are”.

And that’s essentially what happened. People came into the room and were just playing with all of those different things. So some people would be sticking and glueing; other people used the stickers that were there so it was kind of more like, you know just like taking the backing off and sticking things down. Other people were painting. And then there were people doing Lego models. So it was quite a wide range of things that happened in the room.

And then, when it came to the sharing part, that was the point where everybody had already made their mind up as to whether they would be willing to share or not, and there were some people who very comfortably said “well as we agreed before today, I’m sharing this part of my work but there are other parts of my work that I don’t want to share”. And that was something that was fine.

Time 5:00

So I guess the trick here is to actually build that relationship before you have people in the room. Because I agree with you, if you then say “oh you don’t have to share” there is this kind of, yeah peer pressure and this “oh this is awkward because I’ve been here for 2 hours now and now I’m not willing to share it”. But if you lay out those kinds of expectations in advance then people are usually quite comfortable saying “no, this far but not further”.

Élaina Gauthier-Mamaril: Yeah, and that’s a really good point about like sometimes people want partial credit, or like to partially share. We think in terms of binaries of like “no, everything must be anonymous” or it must be….yeah, we opt out. Or everything goes. And I think especially – and maybe Daniel you can speak a bit more to this, like in Creative Methods like we interact with cultures that already exist outside of academia. So I work mainly in podcasting but I’ve participated in Creative Methods around zine making for example, and it was made clear to us by the zine librarian, you know in the culture some people will refuse their zine to be used in academic research. They want the zine to be circulated within community so you can look at it, but you cannot like take pictures of it or even report on its existence basically.

And that, to an academic researcher, might sound like anathema, like I’m not allowed to use this as data, but it’s a very interesting way to look at consent and knowledge dissemination, because you’re like “I created the zine, I want people to see it, I’m not stopping you from seeing it but I’m asking you to then not extract it”.

Nicole Brown: And I think again that’s part of the kind of ethics as a process. So I know that a lot of the times when people are doing research they’re thinking about ethics as this one-stop thing that you do at the beginning of the research in order to be allowed to go into the field and do the research. That’s the institutional protection sort of thing, that’s not what ethics really is about. What ethics truly is about is building that relationship, and in that relationship negotiate every aspect of it.

And like you say, you know there is a copyright or intellectual property right involved here and sometimes people will say “well I want my name attached to that” and other times people will say “I’d rather you didn’t use it at all”. And that’s the prerogative of the person who has contributed to that research.

Ultimately, even if they say I can’t use their canvas for example in an exhibition for a dissemination piece, doesn’t mean I can’t use the data. I can obviously use the information and the data to feed into my analysis to help me develop the recommendations for practice or whatever. So it’s not like this is a waste of time or energy, or waste or work, it’s not, it’s just that, OK this one final thing, that’s the part that you don’t want is because you don’t want to be….I don’t know…exposed or vulnerable as a participant for example. Or you don’t think that your art piece is good enough to be shared in the public. And everybody should have that right really.

Daniel P. Jones: Yeah definitely. I think that’s something that in my own work I’ve been trying to address. So in my PhD research for example, I have done kind of zine workshops, but you know in the PhD thesis I didn’t really refer to the content that had been created that much in the end. It was more so a reflection on that space.

And although in that specific instance it wasn’t because people said “I don’t want this to be talked about”, it was mainly in that situation that decision was made just because it was were peoples’ interests were, they were interested in the workshop more so than the final zine.

And I just think when I talked to people about that, when I said “I’ve done a zine workshop, we’ve created a zine but I’ve not really shared the zine that widely in an academic sense”, people always are very kind of surprised and kind of like “oh well you were funded, you got funding to do a workshop, where’s the final piece?” And there’s a lot of surprise there.

But I think, yeah these conversations around kind of process in Creative Research Methods are happening, but when it comes down it there’s still this expectation of something being produced regardless of, yeah these kind of ethics on a more bespoke or individual scale in terms of those relationships with individual participants and who wants what included in a zine for example. Or even just who is interested in certain elements of work, particularly if we are thinking back to like participatory approaches, right, it’s not even necessarily a “how much can we….?”

It’s not even necessarily a case of “how much work can we give responsibility to participants for”, it’s also a case of “do they actually want to do this?” You know part of that participatory approach is not only kind of allowing people to do as much as they want, but also allowing people to engage as little as they want. And the same goes for….like we were kind of chatting about there in terms of, you know what’s included in kind of dissemination pieces, whether that’s a zine or an exhibition, or a podcast even, right?

Time 10:00

Nicole Brown: Yeah absolutely. Agency means the right to say no to you. So absolutely, that is definitely true.

Élaina Gauthier-Mamaril: I really like Nicole’s emphasis on data generation rather than data collection. When we found the user participatory Creative Methods as generative it encourages us to relate to the work as something dynamic rather than the collection of something static.

Beyond the end product of a workshop, for example a mural, a zine, a poem, the process of creating becomes generative. This means that sometimes having a finished product is less important than the quality of the process itself. But it’s easy to say this and harder to do, because as researchers we’re under pressure to produce recognizable outputs and you can’t easily grasp the process.

Nicole Brown: I think one of the things that you’ve just kind of hit upon here is the challenge of using Creative Methods where there is a certain expectation in Higher Education as to how the use of Creative Methods works and what it looks like and how it’s got to function. And that’s not necessarily the reality of it. And then obviously that means because there are these expectations it then means there is a certain expectation as to what your publication then looks like.

So getting that out, published, you know whether you decide or not decide to try and publish that zine is going to be quite difficult because people won’t necessarily recognise it as an academic article, it’s not equivalent to an academic article. But, not publishing it is also problematic. So it’s almost like they want you to write an academic article and then put this down as supplementary materials. And that’s not proper either because you kind of think “well it’s not just a supplementary material that was produced, this is a thing in its own right”. So that’s the problem that we sometimes get with Creative Methods.

On the other hand though, I mean I’m a great fan obviously of Creative Methods and one of the things that I find really interesting is how certain media are actually levelling the playing field. So a lot of the times I offer Creative Methods and creative opportunities for people, you know again to feed into this idea of the power of expression. And in that art workshop that I talked about earlier I had one station where I had some oyster shells and some Sharpie pens. And the thing is with….I mean I live in the south-east in England, so I live by the coast, I can go and pick oyster shells any time, I’m lucky like that, but the beauty of it is that when you get people to write down something, like on a flip chart or something, there are a lot of people that don’t want to write anything down, especially if they’ve got any kind of disabilities or chronic illnesses because they can’t hold the pen very well. Some people are worried because they may be dyslexic and they’re worried about their spelling. So there is a whole load of embarrassment, guilt, shame that’s involved in getting somebody to write something down on a piece of paper in front of other people.

But with those shells, because they are so wonky and, you know the way that the shapes work, even the people with the most beautiful handwriting were writing in such an ugly fashion and ugly way that everybody felt like “oh I like this, my handwriting doesn’t look any worse than anyone else’s here”. So it’s that kind of thing that it’s interesting to play around with materials where certain things allow you to kind of level the playing field, and again make the research more inclusive through essentially brainstorming, but doing that in a slightly different way with slightly different materials.

Élaina Gauthier-Mamaril: And have you found that Creative Methods also suit, in your experience, disabled, chronically ill and neuro-divergent researchers. Inclusive methods is also inclusive other researchers, which of course at work we’re very interested in. And I know why I’m drawn to Creative Methods, but I was wondering in your experience.

Nicole Brown: Yes I agree with that. I think there is something about, you know again the ability to approach data handling perhaps slightly differently as well. So it’s not just….so I do also advocate for creative analysis or embodied analysis, So it’s not just about the data generation phase it’s also about “OK, as researchers let’s tap into our own gut feeling and our own things and let’s have a look as to what the research data tells us and harness that”. So just to say, I still do traditional coding through the software and all the rest of that.

But in addition to that I also advocate very strongly for using creative approaches to analysis as a step towards that. Now sometimes these things are then becoming pieces that you can share, so they move from being an analytical piece to being a dissemination piece quite quickly. Other pieces are never meant to be for sharing, they remain in that private space of me having made sense of my data.

And that’s something that embodied analysis through Creative Methods, that’s something that I have found is particularly helpful for researchers with all sorts of disabilities, chronic illnesses and neuro-divergences, because it helps dive into your personal way of being, it dives into your person way of thinking, and that’s the kind of approach that makes the research a lot more inclusive for the researchers themselves.

Time 15:00

Élaina Gauthier-Mamaril: Can you give an example of a creative analysis?

Nicole Brown: Yeah. Yeah. So one example that I have shared quite a lot is the fibromyalgia chair, which was basically from a project that I did a few years ago now and that was to do with the academic identity and how academics make sense of their experiences under the influence of fibromyalgia.

Now fibromyalgia is quite a contested condition, it’s got chronic pain, chronic fatigue, it’s got depression attached to it, but most importantly for me at the time is that it’s also characterized by cognitive dysfunctions. And I was interested in how can somebody make sense of their academic identity when you’ve got a condition that basically muddles up with your brain, you know, so how can you make sense of that disparate kind of experience there?

And as part of that, my participants were sharing with me in creative approaches but also in conversations how they manage their condition, how they manage their symptoms, what they do to kind of, yeah basically just get through the day. And from that I developed a piece that then became the fibromyalgia chair. And it was exhibited in a gallery, and then actually toured some other gallery spaces as well. And it looks a little bit like I guess a living room space where you’ve got a sofa and then you’ve got all the paraphernalia that people use to help them get through the day. And then you’ve got a TV screen, and on that TV screen in the exhibition I had looped a video simulation of what it feels like to have cognitive dysfunctions and brain fog.

So it’s that kind of piece that then became….you know it wasn’t meant to be a dissemination piece from the beginning, at first it was literally just like me messing around with different objects in my own house. But from that I saw “actually this is something that helps people understand what it’s like to have a chronic condition”. And whilst it came out of my fibromyalgia research, I would suggest that the piece itself actually resonates with a lot of chronic illnesses more broadly. So whilst I still call it the fibro chair, actually I think it’s a broader picture than that.

More recently I’ve also had a piece that was with umbrellas. So that one is quite a unique one as well. So this is a project piece that came out of a research that was dealing with the career progression of disabled academics during the height of the pandemic but also in the aftermath, especially those kinds of academics that have caring responsibilities or that were experiencing life at the intersection with race and gender as well. So it’s that kind of project where people were expressing what it feels like to be working in Higher Education.

And I had this piece of the fragile covers which was basically sort of fairy lights if you like, and from the fairy lights you had tears or raindrops coming down that were highlighting things that people were telling me made life in academia as a researcher very difficult. So for example issues of accessibility, or for example also precarious contracts, the competitiveness, all of those things are impacting them. And the cover under which they would be working is obviously then getting broken because of those heavy raindrops that are hitting those umbrellas. So it was quite exciting to see that installation as well. So yeah.

That’s just two examples of pieces that I have created that were essentially the beginnings of me making sense of the data, but then were developed further to become installation pieces in museums and galleries.

Daniel P. Jones: Yeah, I love that. I think it’s nice to hear from someone who also kind of engages in these like creative ways of analyzing data as well. So for me, I make zine. I’m very visual as a person in how I understand like data, and so if I’ve got thousands and thousands of words of transcripts I will end up trying to kind of create a zine out of just like magazine clippings and things to understand that data myself. And yeah it’s just really nice to….yeah nice to hear that….yeah that there’s other folks out there that kind of engage in that creative analysis as well as…. yeah because it is more than data collection like you said, it’s data generation, it’s analysis, it’s….yeah.

Élaina Gauthier-Mamaril: Creative Methods are often seen as more accessible for non-academic audiences and participants but they can be beneficial for researchers as well. They also come with a lot of extra labour because we usually have to use these methods in addition to other more traditional approaches to maintain professional credibility. We need to have a think about how we can collectively change that reality. Have you used Creative Methods in your work? What can you do to make that work more accessible in your workplace?

Thank you Nicole for chatting with us, and thank you for listening to this very first episode of Cripping Reseach Culture. Make sure to subscribe to the show in your podcast app so you don’t miss the rest of the series.

Time 20:00

This episode of Cripping Research Culture was co-hosted by me, Élaina Gauthier-Mamaril and Daniel P Jones. Production, writing and audio engineering is done by Élaina Gauthier-Mamaril.

Cripping Research Culture is part of the Wellcome Anti-ableist Research Culture project at the University of Sheffield and it is made possible through funding from the Wellcome Trust.

This Crip Corner is about the term ‘Crip’. ‘Crip’ is a reclaiming of the slur ‘cripple’. It’s similar to how LGBTQIA people have reclaimed ‘queer’. It can be an identity marker, for example “I am disabled and I identify as Crip”, but it can also mean a way of doing things.

We chose to use ‘Cripping’ in the title of this podcast not because we’re only speaking to disabled people but because we are asking questions about research culture from the point of view of disabled staff.

‘To crip’ as a verb means to committing to create a world with disabled people, rather than absorbing disabled people into the world as it is. Cripping changes all of us regardless of ability and we can all take responsibility for that change.

Episode 2: Practical Support for Precarious Researchers with Ash Collins

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Ash Collins: No-one should have to prove themselves that they’re telling the truth. When I first joined the university I remember being quite thrown by the idea that, you know, your hours of work, it’s based on trust, that’s how it was put to me. No-one’s going to be counting when you clock off for lunch and exactly how many hours you’re working every day but we’ll trust you that it will be the right number of hours and that you’re …. You know, what we will look at is your work output. So for the majority of staff it is based on trust, no-one’s ever checking your timesheet for…. at least in my experience in my roles at the university. But as soon as you bring disability into the equation that trust suddenly goes as to why you are asking for these things. But it’s so interesting how that viewpoint shifts once you mention that you’re disabled in a lot of cases.

Élaina Gauthier-Mamaril: Hello and welcome to Cripping Research Culture, a podcast where we ask the question “How can we make better working conditions for disabled staff in Higher Education?”

My name is Élaina Gauthier-Mamaril and I will be your host. I am a light skinned Filipinx woman with short, dark, curly hair. I am also a Research Associate on the Wellcome Anti-ableist Research Culture project at the University of Sheffield where I am developing recommended actions to improve the inclusion of. and respect for, disabled staff.

In today’s episode I am talking to Ash Collins from the University of Nottingham about the challenges of balancing a bespoke approach to supporting staff, and a need for sector-wide change. Ash manages REC-HURDLEs, a sibling project to WAARC that is also funded by the Wellcome Trust to study research culture. While WAARC focuses on disabled staff, REC-HURDLEs directly addresses the barriers to career progression that under-represented researchers face in a precarious working environment.

Ash also has experience working as an EDI manager so I wanted to pick her brain about what practical things institutions and funders can do to better support marginalized staff, including disabled researchers. I hope you enjoy this episode, and make sure to listen until the end for the Crip Corner.

So hello and welcome. Ash, would you like to introduce yourself?

Ash Collins: Thanks very much. My name is Ash Collins, I work at the University of Nottingham and I am the senior project manager for the REC-HURDLEs project, looking at employment precarity and professional development for research staff in job families. And I use they/them pronouns.

Élaina Gauthier-Mamaril: And today I wanted to have Ash on because it’s kind of with my priority areas, which is cross-cutting themes, and I think Ash’s work very much fits that definition. And because as part of my work I need to think about key performance indicators I really wanted to have a conversation with you about that.

Ash Collins: Yes thanks very much. Yes, so I just want to say before we get started that these are my views and not the views of the university. I don’t anticipate saying anything that the university would necessarily disagree with but just wanted to make that clear for the record.

Élaina Gauthier-Mamaril: It’s not a secret that the Higher Education sector in the UK is currently going through a period of austerity. In times like these EDI can easily become a ‘nice to have’ instead of a ‘must have’ for institutions looking to cut costs. I asked Ash for their advice on how to convince universities that supporting disabled and otherwise marginalized staff was worth the investment, but they turned the question around on me by pointing out that excluding people from research culture also comes with significant costs.

Ash Collins: There’s lots of different ways in which that can cost the university through not supporting these groups. So the obvious would be around reputation and rankings for the university in terms of staff satisfaction, in terms of outputs teaching and research-wise. So first of all students need good role models, they need to be able to see people like them where they’d like to be succeeding in that area that they’re studying.

And quite often we see that student access to adjustments is sometimes easier than staff. So I’ve seen cases where students… the hearing loop to lecture rooms work for students who are hard of hearing but they don’t work effectively for the staff at the front of the room, things like that where we need that parity otherwise those role models won’t be there. And equally, you know the research outputs for the university will suffer if their disabled staff don’t have access to a work environment that suits them.

I for one feel like I’m ten times more productive now I’m working from home all the time with that set-up than I was when I was using most of my energy trying to come into the office. So understanding and listening to staff on the environment that works best for them to do effective and high quality research.

Time 5:06

But in the majority of cases individuals just want to be in a position where they can work effectively in a way that doesn’t, you know, disadvantage them in their life outside of work, they have the energy to be social, or to exercise, or do anything else once they come home from work as well. 

And there’s often an attitude that if you give this to one person more people will take liberties, but in my experience the vast majority of people who are asking for these adjustments are people who desperately need it. To go through the process and self-advocate and ask so much for something, you have to really want and need it, and the fact that someone has to self-advocate to that degree and, you know use all this energy trying to get what they need as a basic for their work also massively disadvantages these groups.

But in terms of research outputs, you know you’ve got things like the REF, particularly with the new people, cultural environments section of the REF, but even just in terms of basic research outputs the university will suffer if their disabled staff aren’t able to contribute to the most of their ability.

And staff retention, we’re losing good quality staff because the environment is untenable. So for example coming back to employment precarity for a moment, there are many staff from a number of under-represented groups, so particularly those who are of lower socio-economic status, or those who are disabled, or carers, or parents where there are additional costs associated with their day to day life, who cannot afford the financial risk towards the end of each employment contract waiting for the next. They don’t have that same safety net that will cover them if that contract isn’t renewed immediately.

So many people from those under-represented groups are leaving academia in search of a career that allows them to have a more permanent contract, even though they love what they do, because they simply cannot afford the financial risk associated. And disabled staff, that’s certainly one of those cases.

But also the issues affecting disabled staff affect other groups too, those from under-represented characteristics. And more widely, you know in terms of needs for work from home support, that doesn’t just speak to disabled staff, that speaks to parents, to people with caring responsibilities, to people who have a long commute, or people who financially can’t afford that commute all the time. And similarly, workplace adjustments, that’s more broad as well.

And also the issue of workload is so pervasive, so systemic in academia, that people are expected to go above and beyond with no overtime pay, and that’s how to get ahead. And because other people are doing it you could say ‘well I’m protecting myself, I’m only going to work my designated hours’ but the reality is there will be someone out there who is more able-bodied, without those additional caring responsibilities or something else, who is able to dedicate their entire life to their work, and they will succeed and get those promotions as a result of that.

And this is a sex-wide issue rather than anything of one institution. But this affects, you know people who are disabled, people who have caring responsibilities, and a bunch of other groups as well, aside from just people who aren’t from an under-represented group but would like to have a life outside of work. So you know, prioritizing these issues improves workplace culture for everybody, improves the well-being of your staff and ultimately the productivity of your staff if you’re not going into burn-out. So I think there’s a number of ways in which this will benefit everybody to support these staff.

And additionally, having a diverse workforce improves life for everybody in the university. Seeing diverse representation in your leadership, in your teaching staff, you know in your management, is really key to bringing others up. And also in educating people who are not from those groups on the realities of life, people with other lived experience to their own. You know you need that representation elsewhere. Without asking disabled staff to advocate on behalf of everyone, just being in their role, being authentically themselves at work, you know will do a huge amount to improving this EDI culture for everybody.

Élaina Gauthier-Mamaril: In his book Academic Ableism, Jay Dolmage shows how universities in their organisation and their architecture were built on ableist principles that were supposed to exclude certain kinds of people from pursuing knowledge. As a result, much of the work done to include disabled people involves retrofitting existing systems, and this is long, complicated and much more costly than if the original design were inclusive.

The industry is going through a tough time and many universities have stopped hiring. Maybe this is the moment to stop, take things apart and put them back together again, instead of attempting piecemeal renovations.

Ash Collins: I think right now we’re in a position where in some ways we have an opportunity, because a lot of recruitment practices and other EDI initiatives. It seems very dire they’re coming to a halt because the funding is not there at the moment with the financial situation across institutions, but it does give us an opportunity to really take things apart and put them back together again in a way that we don’t normally have. So I hate the cliché phrase, but you know ‘trying to build the plane in the air’, and right now the plane has landed, we could take it apart, we could put it back together again.

So for example with our work on employment precarity, we’re trying to build a new model of recruitment but it’s really hard when everything’s running to just bring in a new policy and expect that things will change. But right now we have a recruitment freeze because of the financial situation so we can completely re-model things, and when recruitment re-opens we can do it in a new way and we’re not trying to fix things in a process that’s constantly moving.

Time 9:53

And while it’s an awful situation to be in that we don’t have research culture funding in the same way, or EDI funding in a lot of institutions as we did 2 years ago – and I’m not trying to, you know reduce the impact that that’s having because it is enormous – but we are in a position then to really embed those practices as they come back. If we get to a point where financially we are more secure then we can use that as an opportunity to build things that are truly inclusive and accessible from the very start. And I think that is a whole way to look at this as an opportunity, I’m sure you know there’s plenty of downsides to it of course, but seeing the opportunity within that I think is important.

Élaina Gauthier-Mamaril: So how do we start this project? Well, Ash, in their former role as EDI manager decided to hold a mapping activity with stakeholders from across the university.

Ash Collins: So it was a Rapid Improvement event run to look at the reasonable adjustments process for staff and students. So it was a 4 day event – at which point the word ‘rapid’ may become somewhat redundant – but the idea was that it brought together people who had experience of this process from both sides into the same room for 4 days. So we had, you know some of the Executive Board were involved, we had Faculty Operations Directors, the EDI team. We had Disability Liaison Officers, who are staff who do this as a side part to their day to day work. We had disabled staff from the staff network join us. So we had this real breadth of experience of the process.

And the idea was initially we were going to use 2 days to map out the current process for reasonable adjustments at the university, and then 2 days designing what it should be.

Now it very quickly emerged that we were going to need more than 2 days to map what it currently looks like, and in the end we used the 4 days to map the current process as best we could. And then the idea was that was taken forward with a list of action points for HR, for the EDI team, for the Executive Board to take forward and improve the process, which has now been done.

So we saw that even with that wealth of experience in the room, no-one was able to pinpoint exactly what this process was meant to look like when it was working to scratch, you know. So there were huge gaps in ‘where would you access support at this particular part in the process’, or you know it might say on paper that ‘after this step you go to this step’, or ‘if this happens you go here’. But there would be people in the room saying ‘that’s not how it works in that department’ or ‘that’s not the reality of how this actually plays out’.

So I found it really interesting that you could have about 50 people in the room across 4 days and still weren’t able to work out what this process looks like. At which point how is a new member of staff with a disability meant to ever work out where to access support or what this process is supposed to look like, which was why we were doing this event in the first place really.

So we were able to pinpoint where those gaps were, where things needed to be streamlined and come up with a diagram start to finish that people could follow more clearly and at each point they could see what documentation was needed, or who they needed to speak to, and who they could access support from to make it more step by step and more easily accessible to our disabled staff and students.

So by the end of those 4 days the process map before we’d filled those gaps took up the whole length of the room in like quite a large seminar room, and that was just for either staff or students. So it was a horribly amorphous and complicated process. And I imagine that’s the same across many institutions because it’s put together piecemeal, you know you see there’s a gap in there so we add that area of support, or a section of HR thinks they’re who someone comes to for this area but the reality is that people often go somewhere else as a default. So having that experience in the room meant that we were able to pinpoint this.

We had different coloured post-it notes to look at what was working well and what was not working well in the university. There were a lot of red post-it notes by the end of that, so there was a long list of things to change because the reality was it wasn’t working how we’d designed it. But that gave us a clear action plan to take forward.

So we had a 100 day action plan that we built as a team for the Executive Board to take forward and for HR to improve upon. So we’re now in a place where that’s been streamlined and there’s been lots of communication across the university on what the process now looks like.

So yeah it was a very interesting way of going about things. Obviously it showed that it was a lot more complex than we’d thought it was going to be, because I said ‘4 days, 4 days Rapid Improvement event’, but in the end we could have done with 8 or 10.

So yeah I thought it was a really interesting way of doing things. If you can find the time in peoples’ schedules for people across the university to come together, which was the hardest part to be honest, then it was an incredibly effective way of doing things in the end.

Élaina Gauthier-Mamaril: In academia there is a lot of pressure to propose bold and innovative projects to show that you are pushing the envelope and looking to the future. But to do that we also need to make time to take stock. So with working on WAARC I have become increasingly aware of the importance of Crip practicalities, or the pragmatic tasks like looking for existing resources before creating a new one, or populating a spreadsheet with the names and contact details of the people who manage the delivery of Access to Work.

This is the kind of time consuming and sometimes, I’ll admit, tedious work that is necessary to effect change for disabled staff in the long run. At the macro level it is the responsibility of funders to take up their role in shaping research culture.

Ash Collins: Absolutely, I think they have a large amount of power in that area, and not often because they’ve chosen to put themselves in a position of power but just because practically with the finances that they provide that’s where they sit, which means that even if they didn’t choose to have a responsibility for this work they are in some ways accountable for driving this change.

Time 15:07

So there’s a number of ways in which this can be done. So, you know specific kind of targeted funding for disabled researchers would be an obvious one in the same way that this has been done. So for example the Wellcome Accelerator Awards for Black and Pakistani researchers at the moment, you know something similar for disabled research staff would be really key. Additional professional development funds for researchers from disabled backgrounds, similarly to what we are doing with our bespoke scheme but taking the onus off the institution to provide that.

Funding for wider EDI research culture initiative such as the projects that we are both a part of at our respective institutions, because quite often, especially with the financial climate at the moment, universities, however well-meaning, are not in a position to bring out new sources of funding to support EDI or research culture development. But if funders are in a position where they are able to do that – so Wellcome have taken the stance that better research culture means better research that they are funding down the line as well, which is definitely the case. So for funders who have that money available, bringing in research culture in EDI funds would be really key. I think they are in a position to reward positive action at a local level or an institutional level for people they are funding, so whether that’s in terms of application processes or funding reporting processes for research grants.

There’s a lot of people out there who are incredibly well-meaning but their workload means that they can’t carry out this additional EDI work. There are a small number of people who will do it anyway on the side of their desk, even if it’s not part of their workload. There are a small number of people who maybe don’t agree with these EDI initiatives or would not do it regardless; but the vast majority of people in the middle are people who are well-meaning but it’s not their day job, they don’t have time for it, they don’t have that capacity, or they don’t know where to start. And if you make it a part of funding processes then all of a sudden it becomes a more justifiable part of your day to day job and your workload, and that opens up the door for a large number of people who want to do this anyway to be able to prioritise a researcher’s professional development, EDI courses, research culture more broadly, employment precarity, all of these sorts of things.

So rewarding local areas of the university, Schools, for carrying out good work in this area, or institutions as well, similarly to the way that REF do with their sort of assessment - I’ve forgotten the phrasing – the sort of units of assessment, so you know they do that across research groups, Schools, Faculties, institutions. So funders could definitely do something similar there.

And also include making sure that they have good representation in their workforce and on any assessment panels and boards that they have. So for example, funders have begun to put PRiSM staff, so project management staff, on their grant assessment panels because these people have a vast amount of experience in how a project should be run well and what pitfalls there might be. And sort of acknowledging the vast amount of knowledge that’s in PRiSM staff, bringing them on to the assessment panels to look at which projects are likely to succeed, not just from a kind of ‘is the literature sound’ but practically ‘is this going to be viable’, so really acknowledging where they don’t have the experience to make some of these decisions.

And I think the same goes for EDI groups. I strongly believe that we need good representation from all EDI groups on these grant application panels to look at, you know ‘are there ways in which this will have unintended consequences for certain communities?’; ‘has the recruitment of post-docs on to this grant been truly equitable, is it a who you know approach to putting a named researcher on a grant?’; ‘are your recruitment practices truly fair and inclusive for finding your post-docs?’; and ‘are there ways in which the design of this project will disadvantage certain people from being able to work on it or to benefit from the results?’. So I think that’s an important aspect as well.

But there’s definitely a lot of power that these funders have without it necessarily costing them any money, it’s beyond just ‘here’s a funding opportunity for EDI’. It’s about them, you know really institutionalized representation across their funding body and supporting that across other institutions as well.

Élaina Gauthier-Mamaril: And finally, in the name of my Crip kin who have fought for independent living, there is another way funders can support under-represented groups, through direct payment.

Ash Collins: I suppose I’d like to speak to something that Wellcome are doing as part of this project, or the wider research culture funding that they’ve got available, which is that they’ve opened up the opportunity for reparative rest leave to staff working on all of their projects.

So this is quite a radical idea that’s been done by one or two other companies previously and it allows you to take additional time off work that doesn’t contribute to your annual leave or sick leave allocation. And there’s a small piece of funding attached to that as well with no expectation for you to prove why you need that leave or that funding, and no expectation to report back on what that funding was spent on.

So it’s for people who are from under-represented groups who might face additional stresses and discrimination in their work; people working in areas that involve a large amount of emotional labour; or people like you and I at the intersection of the two.

And I thought that was a brilliant idea. So we’ve open that up to our participants on the bespoke scheme as well and had some interest there. Obviously there’s no policy for that within the university at the moment. And what we are trying to do with this scheme is quite ground-breaking, so there isn’t a guarantee up front that we’ll be able to make these things work but there is the promise that we will work with line managers and other staff to try and open up these opportunities for individuals where there’s not currently a university policy on it.

Time 20:11

So for example for me, I took that reparative rest and I thought perhaps I’ll use it on a spa day, or I’ll use it on, you know something that I thought would be obvious self-care. And in the end, with the Supreme Court judgement on Trans Rights, I ended up using it for train tickets to go and attend the protests, and that was the best thing for my mental health at that point. But I’d not made any up-front promises on what that money would be spent on and I didn’t have to report back, but it was incredibly useful for me to come out of a bit of an emotional slump.

So yeah I thought that that reparative rest idea was a nice radical approach to care for things for under-represented groups.

Élaina Gauthier-Mamaril: Thank you very much to Ash Collins for joining me today, and thank you for listening. Make sure to subscribe to the show in your podcast app so you don’t miss the rest of the series.

This episode of Cripping Research Culture was hosted by me, Élaina Gauthier-Mamaril. Production, writing and audio engineering is done by Élaina Gauthier-Mamaril.

Cripping Research Culture is part of the Wellcome Anti-ableist Research Culture project at the University of Sheffield and it is made possible through funding from the Wellcome Trust.

Today’s Crip Corner is about the link between disability and precarity. Precarity is a state of persistent insecurity, especially when it comes to employment. For example, early career researchers who depend on short term fixed contracts experience precarious or unstable employment. This means that on top of doing their job they have to put time and effort into securing the next job or risk losing access to food and housing. This becomes extra stressful when you are disabled.

All human beings experience precariousness, that is our lives are fragile and we all depend on certain things to survive, like food, shelter or freedom from harm. We are all at risk if those basic things are taken away from us. Philosopher and disability scholar Eva Feder Kittay argues that living with a disability intensifies the experience of precariousness. Slight shifts and access to care and funds can make it impossible to live, let alone progress in one’s career.