Podcast with Brandy Schillace and Stuart Murray
LivingBodiesObjects is a 3-year project funded by the Wellcome Trust designed to test and extend the boundaries of Medical Humanities research. Wellcome’s three-year development grant will be used to further understand the relationship between the human body and technologies associated with health and disability. At the same time, the project will look critically at the way research gets done—and how research questions are themselves generated. We are excited to be part of this project by offering a platform to share that journey.
Stuart Murray is Professor of Contemporary Literatures and Film and Director of the Centre of Medical Humanities at the University of Leeds in the UK. He has published widely on representations of disability and his latest book is Disability and the Posthuman: Bodies, Technology, and Cultural Futures (Liverpool UP, 2020). He is the lead on the Wellcome Trust-funded Imagining Technologies for Disability Futures project, and joint-lead on LivingBodiesObjects: Technologies and the Spaces of Health, also funded by Wellcome.
TRANSCRIPT
BRANDY SCHLLACE: Hello and welcome back to the Medical Humanities Podcast. I’m Brandy Schillace, Editor-in-Chief, and today I’m here with one of our editorial board members, Stuart Murray. He’s a Professor of Contemporary Lit and Film, and he’s the Director of the Leeds Centre for Medical Humanities about to start a really fascinating project. Thank you for being with us, Stuart.
STUART MURRAY: Thanks a lot for having me, Brandy.
SCHILLACE: So, I know that you have been working on some really exciting things lately, and I was wondering if you want to give us a little bit of an update about the new project, the latest project that you’ve just started?
MURRAY: Yes, we’ve just started a new project at Leeds, which is a project centered around whole ideas to do with research and its development, specifically around health, space, objects, and technologies. So, it’s called LivingBodiesObjects. And what’s absolutely fantastic about it is we’ve got the opportunity to do something which is genuinely a blank piece of paper. One of the things that we’ve been told about from our funder, the Wellcome Trust, is that we can be as much as two years away from finding specific research questions for the project. And so, we’ve got a three-year project in which we have two thirds of it, as I say, can be simply thinking about the very beginnings of the way in which research might address health questions. And so, it’s hugely exciting because of that openness.
SCHILLACE: That is actually really remarkable, because that is something you don’t normally hear, right? Most of the time, you hear about research after it’s already done. And so, I’m fascinated by this project and the support that it’s gained for looking into these issues and recognizing just how important the question process itself is.
MURRAY: Yes, because with a lot of research, we always think we’re kind of starting at the beginning. We might say, OK, we’re gonna do some collaborative research. It’s gonna be interdisciplinary. And because of that, it’s going to be innovative. It’s gonna be original. Here are our research questions, and then the research will start and follow a course. But the truth about that, of course, is that a lot of those words are already loaded with all sorts of assumptions about what the research process might be. So, if you say “collaborative” or if you say “inter-” or “multi-disciplinary,” you’ve, actually, you’re already working with pretty static and firm ideas of what subsequent research is possible.
And what we’re trying to do is to say, and sometimes it’s kind of best formulated as a question, which would be, well, what if you had to start before that? You know, what if instead of saying, “This is where we begin with our different disciplines,” you were saying, “Well, where’s the start before the start?” How can you first set up a series of questions about what might constitute the very beginning of the research? And for me, that’s kind of hugely exciting because even to say that is to bring into focus those very ideas of what we think is an original starting point. What is the originality of the research project that’s gonna follow these questions?
SCHILLACE: Right.
MURRAY: I mean, what do you do if you don’t have those research questions in mind in the first place? How do you quantify where you’re going to go? How do you record decision making? All of those things.
SCHILLACE: What I find really fascinating about the concept of the questions before the questions is, to go back to your point about loaded terminology, right? One of the things we’ve focused on so much at our journal is trying to create access and diversity and trying to make sure that we’re providing spaces for people with disabilities, for people for whom English is not a first language, for people in the global South to have voices. And well, they already have voices, but to basically be able to actually get their words out in public where people can reach them. And we don’t realize just how loaded so much of the terminology is, how inaccessible so much is to people. And it’s partly because we don’t even see that the terms and the nature of research already have all of these other parameters.
MURRAY: Yeah. So, for example, some of the most thoughtful research that wants to improve equality, diversity, and inclusion will think about where it might go in the development of the research project. So, you might think that you’re going to be starting with research questions, you’re gonna be bringing in participants who will help you co-design the research. But you’re absolutely right that, in many ways, that is a certain kind of formulation that already has a history and a standard practice. What it doesn’t do, for example, is ask the question of, well, where might there be inclusion in the very first formulations of what the research might be? That point about the start before the start.
SCHILLACE: Right?
MURRAY: How, in fact, when you’re not, when you’re doing a research project that doesn’t involve setting up research questions, then where does access and inclusion go?
SCHILLACE: Mmhmm.
MURRAY: And I’ve found that, in a way, what we’re doing is we’re forcing ourselves to look at those questions. And what’s fabulous about it is, I mean, from what we’ve been saying, it sounds a bit like a kind of philosophy project that you can do just by sitting in your front room.
SCHILLACE: [chuckles] Right.
MURRAY: But at Leeds, we’ve got a physical space, and we’re developing ideas around virtual space. And in other words, we are literally putting ourselves in a lab space with all the traditions that labs come with and all that legacy of technological, historical, scientific thinking. And we’re trying to begin those processes of thinking about how research starts through these ideas of space and through the ideas of the space between objects, for example.
SCHILLACE: Mmhmm.
MURRAY: So, one way to put it is the ambition of the project lies in the imaginative creation of the spaces we’re in and not in any preempting of the materials that they might produce.
SCHILLACE: Interesting. Yeah. I just recently had a podcast with Riva Lehrer, who wrote Golem Girl, and she is a disabled artist who, you know, and she talks in her book about the things that are invisible to people who are abled or who are just privileged in certain ways and all the ways that—and actually, Alice Wong talks about this too—all the ways that accessibility is often an afterthought. So, it’s like, oh, we built the building. Now we need some ramps or we need an elevator or, you know. Instead of asking at the very beginning, “How could…. Why do we not involve disabled people in the process? What would be the questions they would ask? How would they look at a building plan in a completely different way?” And so, Riva talks about this. Alice talks about this. Alyssa Burgart is another person we’ve interviewed on the podcast. So, it strikes me that the type of research you’re doing does many things that they were talking about, too, which is getting behind all of that and going, “Let’s not create the thing and then think about how to fix.” [laughs] You know?
MURRAY: Yeah, that’s a really lovely parallel, because in many ways, an interesting word you used there is “think.” So, the idea is exactly as you cite: You don’t make the building and then try to modify the building in order for it to be more accessible, and there are many good examples of where good work is done on that. But we’re taking something similar and talking about the research project.
SCHILLACE: Mmhmm.
MURRAY: That you don’t even start the research project before, not so much even that you’ve built those things in, but you’ve asked what the questions might be.
SCHILLACE: Mmhmm.
MURRAY: And so, on our project, we’ve got a series of partners who are gonna come into our lab as residents, and they are coming in with no expectations on them whatsoever. We’ve got a theater company, we’ve got a charity, we’ve got two charities, actually: a learning disability charity based in York, in the UK, and the Bhopal Medical Appeal, which does so much to keep the news of the Bhopal disaster at the forefront of public thinking. And we’re not kind of saying, “Here we are as researcher. Do you want to join us because we’re trying to answer these questions?” We’re interested in what happens when they help, not only, even before formulating the questions. We’re kind of like, “Well, what is it? What would you want to do? Who would you want to bring in?” Even before we ask our partners how the research we might do together starts, we’re kind of asking them to learn the research and asking them who would they want to bring in, in order to start thinking. So, this is a continual way, I think, in which we’re trying to get behind. And that’s so dynamic because it does allow you to ask some very, very kind of formative questions around health research, around the assumptions and the trajectories of health research.
I was thinking earlier this morning about this, some really basic things about the assumption of the life narrative, the health narrative, assumptions around sort of listening to patients, assumptions around ethics, and to kind of go back before the first questions that you might ask about those when you’re doing research and just kind of do some whys. I’m really interested in the idea of listening, whether it’s the best idea, for example. It’s a kind of standard in lots of medical humanities research that what you need to do is listen to the patient. And well, just stop for a second and say why? Why is that? What are the benefits, but what are the constraints that come from that?
SCHILLACE: Right, right.
MURRAY: And to kind of keep looking at those things that are given as givens and try different kinds of assumptions.
SCHILLACE: That’s a really important one, partly because, and we’ve talked about this before as well, which is OK. So, listening to patients, it sounds easy to accept, right? Like, sure. Yeah, we listen. Of course. That sounds perfect. But in a situation where it’s a medical provider and a patient having a dialogue, somebody has power, and somebody has a lot less power in that. It’s not an equal relationship. And so, it’s important to ask: How is this an unequal situation before it starts? What kind of conversation is possible if the…. I was thinking about this in terms of non-compliance. I wrote an article recently for Wired about this, if you’re considered a non-compliant patient, but there’s lots of reasons for non-compliance, right? Maybe you don’t take your medicines ‘cause you don’t understand them.
MURRAY: Yeah.
SCHILLACE: Or maybe you mistrust the medical system. I’m in the United States.
MURRAY: [laughs] Yes.
SCHILLACE: So, obviously, right? There’s a lot of distrust. So, you create this situation where you say. “Yes, of course, listen to patients.” But that conversation is never going to privilege the patient with, that patient’s never gonna have power in that situation the way it might be envisioned, right? So, herein lies that importance of that question. What do we actually want to happen in that? Is it just about making the patient feel better, or do we actually wanna learn something? And if we wanna learn something, how might that dialogue have to change so that we could, so that medical providers and patients are on more equal footing? Is that even possible?
MURRAY: Yeah, exactly. I mean, a couple of things immediately come to mind. One is that, if we’ve had decades now of listening to patients where we didn’t have that before, let’s look at the fact that there are still huge structural inequalities in health care. So, that’s one of the things that seems like a kind of contradiction, didn’t it?
SCHILLACE: Mmhmm.
MURRAY: We’re doing more listening, but the structural problems remain. And the second one is I’m getting really interested in the—because we’re doing quite a lot of work with virtual reality—getting really interested in the way in which certain new virtual technologies want to help with conveying ideas of patient experience in kind of nontraditional ways. And one of the things I was looking at this morning, the suppliers of a certain kind of technology around body mapping and pain made the point that the average amount of time that a patient has in talking to a doctor before they’re interrupted is 11 seconds.
SCHILLACE: Hmm.
MURRAY: So, after 11 seconds, somebody comes in and starts to ask you questions before you’ve probably even got to the end of what your second sentence and saying why you’re there.
SCHILLACE: Mm.
MURRAY: So, I’m really interested in how…what that means for our very assumption that kind of listening is a good. And it’s not, listening is one kind of example, isn’t it? It kind of, it cascades out from that. There are certain decisions about the benefits of technology, the benefits of certain spaces. And I think to ask questions about that even before they’re put into research questions around, say, technology, around narratives of medicine and life stories is to open up really kind of fascinating critical spaces and make demands. It leads you into unsettled, you know, unsettling places and difficult territory.
SCHILLACE: Mmhmm.
MURRAY: And that’s, you know, it’s enlightening and productive. And that’s what we’re trying to do. I mean, we’re only, we’re a month into the project, so it’s lovely to have a conversation with you when we’re at the start of the start before the start, if I can.
SCHILLACE: [laughs] Well, I mean, isn’t that just— We, you and I, have spoken about some assumptions that we make about journals themselves, right, and what a journal is for.
MURRAY: Yeah.
SCHILLACE: And one of the nice things about Medical Humanities, if you’re a new listener, we do have the podcast, we also have a blog that we run a bit like a magazine, almost, and then we have the journal itself. So, we have quite a lot of platforms and social media presence. And that means considering what a journal does and figuring out if there’s new and better ways that journals can be part of research.
MURRAY: Yes. I mean, one of the great things about the journal is the way in which it’s expand expanded out through the blogs and the podcasts to try and say, we’re getting away from the idea that a journal is simply a space for the publication of academic outputs, yeah. There are other ways to phrase, to express, and to convey the kind of work that’s going on around medical humanities research.
But at the same time, I mean, I think what’s potentially quite exciting about LivingBodiesObjects is the idea of a project that’s a month old starting a conversation with a kind of sector-leading journal, which one way or another, is most well-known for publishing outputs.
SCHILLACE: Right. [chuckles]
MURRAY: I mean, the very question of like there’s a why there, isn’t it? Why would you do that? But of course, you do that because the journal is interested in medical humanities research, right?
SCHILLACE: Right, exactly.
MURRAY: And this is medical humanities research. So, to me, and I know to you, ‘cause we’ve discussed this before this, there’s such an opportunity there, almost like for a journal that you would associate with outputs to follow the trajectory of a research project that has a fantastic amount of space not to worry about producing outputs but is still focused on research.
SCHILLACE: Right. Well, and I think, too, there’s a transparency here. And transparency and social justice, right, are partners often because if you’re watching the way the research itself takes place and you’re sharing that widely, then you’re also inviting more perspectives to comment on what that perspective and what that trajectory might be. And so, I think there’s an inclusivity built in to a project that can collaborate with a platform, with a platform like this one. And so, I’m really excited, and we’re planning, I think, I hope, to keep checking in on the project as it develops to be part of that because there’s a real chance to share this in ways that reflect exactly what it is that your project is most, the types of things that your project is interested in.
MURRAY: Yeah. I mean, I think there’s a couple of things. Some of our listeners will say, “Well, hang on. You’re claiming this is a blank piece of paper. In fact, you’re funded by one of the major funders of medical humanities research in the world, the Wellcome Trust.” So, it’s not exactly like we haven’t been part of a system which has made this possible. That’s true. There’s no two ways about that. But at the same time, the kind of hands-off element that we’ve been lucky enough to receive as we’ve been developing the research is very true. It’s very noticeable. And one example of that, I think, is the conversation we’re having now, Brandy, isn’t it? It’s serendipitous. I mean, you and I, in some cases, we were talking about something else, and this project came up.
SCHILLACE: [chuckles]
MURRAY: And then it was like, OK, well, this sounds interesting. I hadn’t thought about the possibility of this kind of relationship between LivingBodiesObjects and the journal until we started to plan today. And I think that the transparency, inclusivity, serendipity is a good friend to those. Because—
SCHILLACE: Absolutely.
MURRAY: —because it’s not, you know, if I were to say to you, “collaborative research, multidisciplinary research,” these things have, already have their own spatial metaphors working, don’t they? They already have a sense of the in-between or the across, and they can be very, very centered around exclusion.
SCHILLACE: Mmhmm.
MURRAY: I like serendipity because it opens up the chance to make spaces for being inclusive and pursuing justice as you put it. It’s a really interesting word, “justice,” I think, in relation to allowing yourself to let conversations happen.
SCHILLACE: And also challenging yourself about how you listen and in what ways you listen.
MURRAY: Yes. No, that is so important to us because one of the things that we found was really dynamic when we started setting the project up was something that I think quite a few researchers might think is anything but dynamic. And that would be, for example, data management. Yeah?
SCHILLACE: Mmhmm.
MURRAY: So, most people maybe, who work in medical humanities would think, OK, I know what data management is. I might need to get ethics clearance to do the things I want to do. I might need to find a way to appropriately archive the data that my project will produce. But when we went to the data management team at Leeds, they were so interested in this. And one of the things they said was, “Well, how are you gonna capture the outcomes of your very first conversations?” So, nothing to do with whether you need ethics clearance or not, or whether you’re going to produce sensitive data. Your very, very first conversations, can they be captured in any way? And this was such a kind of wonderful thing to think about. So, we’re gonna have on the project a postdoc with experience in kind of highly innovative and original project capture.
SCHILLACE: Mm.
MURRAY: And we’re thinking of anything from cartoons to the more regular things such as journals, filmmaking, photography. But there are so many possibilities to think. And this is a genuine research question, isn’t it: How do you capture decision making?
SCHILLACE: Yes. Well, it’s almost an ethnography of the whole project, isn’t it? I mean, in a way.
MURRAY: It could well be. These are the words that float around, isn’t it? And then…. And yeah, it’s a good word in a certain kind of ethnography, I think, would be a good way to put it. But I find there’s so much that, there’s so much thought that gets prompted from asking a question like that: how to capture the conversations around the very origins of the research and not just what the research produces.
SCHILLACE: Right. Right. Because—
MURRAY: In terms of thinking about decision making. Because the decisions that might be made after a series of interviews, maybe, with a community to do with health or to do with disability, the kinds of questions you’re going to ask, that sort of thing is not what we’re talking about. We’re talking about the very first decisions we made at the very start of the project to base an inquiry around objects and bodies and the spaces in between them. What might be possible if you try and theorize or configure those so that the decisions to do that, to try to capture that, to archive it, to think about what it might mean, it’s tremendously exciting.
SCHILLACE: It is. And I used to work in a medical history museum, and I’ve done a lot of work with museum specialists and curators. And so, it strikes me that there’s a kind of curation that’s going on here. And one of the questions that was asked a lot by museum professionals is another why before the why: What do we mean by curate? Who gets to curate? What gets chosen and what doesn’t get chosen and why? And so, to me, this is like, I’m mentally perceiving this as an almost a sort of online exhibition, an online, virtually curated kind of example of how research gets done that’s trying to be as inclusive and expansive as possible, while also recognizing that you can never get all the way underneath anything. And I think that that’s something that’s important too.
MURRAY: I think you’ve made the absolute right spot because it’s interesting that we have four planned six-months residencies with our partners, and the final one is with the Thackray Medical Museum in Leeds, which is the largest specific medical museum in the UK.
SCHILLACE: Mm!
MURRAY: So, there you have it. So, we’re leading up to a partnership with, exactly as you say, a medical museum where much of what they do is think about curating objects. So, we really hope that after two and a half years, we’re able to approach them with a really developed and innovative sense of what to curate means.
SCHILLACE: Mmhmm.
MURRAY: And then to see what they make of that and how they want to interact with that. And yes, it could be online. I mean, it could be pop-ups. It could be all sorts of things.
SCHILLACE: Could be podcasts. [laughs]
MURRAY: It could be podcasts.
SCHILLACE: Right here!
MURRAY: There could be lots of podcasts. It could be a podcast every month now that we’ve started. And what’s so exciting about that, I think, is to—and this is absolutely key, I think, from what we’ve done even in the last few weeks—is to say, what’s the physical space expression of that? Place an object, an object from a medical museum, in the center of a room without preconditions. Invite people to move around it, to reflect on it without preconditions. Think of all the interesting sort of highly dynamic things that would come from that. But then the pandemic and lockdowns have reminded us that our project actually fits with thinking virtually.
SCHILLACE: Mmhmm.
MURRAY: Because there are so many, you know, well, to be even specific, there are so many new health platforms that will use kind of VR ways of accessing the body, of rethinking the body that suddenly, we realize that our idea of objects and living bodies—those words in our title—are incredibly dynamic when thought of in virtual space.
SCHILLACE: Well, and think, too, about the issues of accessibility around virtual space. And particularly, I mean, the pandemic has only made it clearer, but disabled people, disabled activists, disabled bodies, they have different ability to access things, right? And so, one thing that has come about is the ability to go to conferences virtually, which for some people, I have a friend who has severe migraines and they’re quite debilitating, and she can’t go to conferences. But if you are at a virtual conference and you have a migraine, you can lie down, you can come back to it, you can. Some of them are actually captured so that you can return to them later. If you have a compromised immune system and you can’t fly around to visit these places or you can’t take classes the way a normal person—”normal” is the wrong word there. Sorry—if you can’t take classes the way an abled person might be able to because of various accessibility issues and timing and all sorts of other things or because you need transportation, suddenly, all that becomes, there is a possibility of leveling with virtual space. But it doesn’t automatically level. It doesn’t automatically create accessibility. And I think that’s really important, too, because virtual space isn’t just, you don’t snap your fingers and go, “There. Now everyone’s equal. Now we’ve created equity.” It actually has to be designed that way.
MURRAY: I think, I mean, you’ve absolutely hit on it there, that there has been, I think, huge strides made and to some degree, a sense of surprise, particularly in the non-disabled world, academic world, about how conferences and events have functioned in exactly the kind of way that you’re saying there. And of course, not just thinking about your point about social justice, not just for disabled communities, but for example, I went to a fantastic conference where people from Indigenous communities from all around the world were able to attend in a way that would’ve been impossible if they were in a physical space.
SCHILLACE: Mmhmm.
MURRAY: But as you say, there are undoubted benefits of this. But there’s also maybe certain assumptions that what constitutes access in the virtual world is, yeah, is kind of free at the point of entry, and it’s not. So, we’re trying to balance thinking about that. I mean, to go back to our starting point about, say, academic health research. So often, you might say, right, we’re going to invite people with disabilities onto the university for conversations and tell them about our research project and go from there. But for a lot of people, a lot of people don’t want to come into a university. They don’t feel comfortable in those kind of spaces. And so, that can really change the dynamic of the research that you’re planning to do. If you’re trying to bring people to you and their being able to work virtually, I think, is hugely exciting, has got huge potential if you’re able to get the technology to the people. And that’s what we’ve been lucky enough to do. We’re able to get hold of technology that—kind of VR headsets and the like—that we can take to the very people we want to communicate with.
SCHILLACE: Mmhmm.
MURRAY: And we can say, “What do you think the founding questions for how we’re thinking about the relationship between bodies and health spaces and technologies, what do you think they should be?” And we go from there.
SCHILLACE: Right, right. Well, I think this is really fascinating. And we’re gonna go ahead and wrap up now, but I know we’re gonna be revisiting this project soon. Where can people find out more? I believe you have a website, right?
MURRAY: We don’t have a website yet, because what we’re doing is we’re moving to, I mean, so, we started a month ago. And just this week, we’ve set up our Twitter account, which is @LBObjects.
SCHILLACE: LBObjects, OK.
MURRAY: So, people can find us there. And we’re planning for a launch of the project officially in May.
SCHILLACE: Excellent.
MURRAY: I mean, one thing we’re saying about that is we are, even within the project, we’re having to start before the start.
SCHILLACE: [laughs]
MURRAY: So, we don’t start working with our partners until June.
SCHILLACE: Mm, mmhmm.
MURRAY: Because we didn’t just want to invite people into a blank space without having thought about what that space might be. So, we’re working with creative artists and technologists to give us a set of thoughts that we can bring to our official opening in May. And that’s where we are at the moment. The website will be in place then. But for the time being, we’re trying to capture the work we’re doing through a series of tweets. We hope we’ll be making quite a few every week.
SCHILLACE: Fascinating. Well, I will try to make sure that we get our MH handle to follow you, and I will certainly look for it myself with @BSchillace. So, it has been so wonderful to have you on, Stuart. Again, really, really appreciate this. If you could just remind everybody one more time, the title of the project is?
MURRAY: LivingBodiesObjects: Technologies—
SCHILLACE: LivingBodies.
MURRAY: Yeah, LivingBodiesObjects.
SCHILLACE: Love it.
MURRAY: Health in the space of technologies. But it’s LivingBodiesObjects with no spaces between the words.
SCHILLACE: Nice. I like it. This is fantastic. Again, thank you for joining us. Thank you for being part of this. And I look forward to seeing what this collaboration gives us in the future.
MURRAY: Thanks to you, and thanks to the journal’s interest, Brandy.