95 - Dr Élaina Gauthier-Mamaril - "Long Covid, Zombies & Crip Prophecies"

Episode 95 of the Long Covid Podcast is a chat with the fabulous Élaina Gauthier-Mamaril, Interdisciplinary Research Fellow at the Centre for Biomedicine, Self and Society at the University of Edingurgh. She has experience of disability through ME/CFS and is also presenting part of her research at the Edinburgh Fringe this summer as a show - "Long Covid, Zombies & Crip Prophecies"

This is such an interesting discussion about disability in general as well as Élaina's research and how it is important going forward.

Tickets for "Long Covid, Zombies & Crip Prophecies"
8 Aug: https://www.thestand.co.uk/performance/15597/making-great-dancerslong-covid/20230808/fringe

22 Aug: https://www.thestand.co.uk/performance/15648/cabaret-of-dangerous-ideas_long-covid-zombies-and-crip-prophecies/20230822/fringe

Élaina's  Personal website www.elainagauthiermamaril.com

What my bones know - Stephanie Foo

For more information about Long Covid Breathing, their courses, workshops & other shorter sessions, please check out this link

(music - Brock Hewitt, Rule of Life)

Transcript

Jackie Baxter  
Hello and welcome to this episode of the long COVID Podcast. I am delighted to welcome my guest today, Élaina Gauthier-Mamaril, who is an interdisciplinary research fellow at the University of Edinburgh and is also going to be presenting her research at the Edinburgh Fringe as a show called "Long COVID zombies and crip prophecies". So we're going to be talking a whole load about this today. And I'm super excited to dive into it. So a very warm welcome to the podcast. 

Élaina Gauthier-Mamaril  
Thank you for having me. 

Jackie Baxter  
Could you maybe just talk a little bit more about yourself to start with, and what all of that stuff that I just said, actually means? *laughs*

Élaina Gauthier-Mamaril  
*laughs* Yes, so I present myself now as a disabled philosopher of disability, I have a background in history of philosophy. I studied in Canada and in the UK. So I've broached a few different philosophical cultures. And now I'm very much at home with the center of biomedicine self and society at the University of Edinburgh. We're an interdisciplinary center. And what that means is that people come from different research backgrounds. So I work with other philosophers, but also historians, sociologists, anthropologists, people who work in science and technology studies, who work on AI and robotics. 

So it's a really fascinating mix of people who are all kind of looking at health care, from a lens that is not directly medical, like we work with people involved in biomedicine. I have had the privilege to teach future medical doctors. But we approach health and well-being from a different point of view.

Jackie Baxter  
Yeah, and that's so fascinating. And I think this is something that I've realized over the last couple of years, is that you have a health condition of whatever description. And obviously, it impacts your health. But it also impacts so many other parts of your life. So it's almost like you're looking through your life, and all the different aspects of it, through this different lens, or through this, you know, through this healthcare lens. So I think that's just really cool that you're able to, you know, work in this kind of, oh, sort of tentacles of everything kind of way.

Élaina Gauthier-Mamaril  
Yeah, the journey has been long. Like for your listeners, I have MECFS. And I've been ill since I was 10. And I'm now 31. So that is 21 years. And I've grown up basically knowing that I couldn't keep up with my peers, physically. So I invested heavily in academics and then burnt out there as well. Because if you don't know that, you can have post exertional malaise from using your brain as well as using your body. 

So I was lucky to have a GP who did diagnose me and that gave me resources and a community to turn to but it wasn't only until partway through my PhD that I found other disabled people online and I was able to kind of come into my identity as a disabled person. And I forget now who coined this term. But the philosopher Mitch Curia brought this to my attention, of the term of "crip queer", which is kind of analogous to genderqueer, for example, in the LGBTQ community. So people who are gender queer, do not subscribe to the binary. The gender binary. 

People who are crip queer, are people like me who live with cyclical or episodic, invisible illnesses. And so we don't feel like we necessarily fit into the category of someone who has a permanent disability, if you will, like someone who needs mobility aids all the time, or things like that, or who is blind or etc. And for me that really hindered my access to identifying as disabled and to finding community there. But yeah, so now that I found that, now I have a name for that - being crip queer, being in kind of this liminal space, where I do belong to the disabled community. 

But I do recognize that my experience is different from someone who is a wheelchair user, for example, or someone who is deaf or etc, so it allows me to like exist in that space and feel that my experience is valid, without going through through all the anxiety hoops that I was before, being like, I don't get to complain, because my life, I can pass like, I can go through the world, and people don't think I'm a disabled. And that gives me tremendous amount of privilege. However, I still have my own struggles. So I came to a position where I can be like, you know, what, I'm part of this world, disability is not a monolith. And I'm also in a position where my academic trajectory has been a lot about looking at agency and what agency looks like, when complete independence is not possible. 

And I came to reflect, after a while that a lot of that was motivated by my own experience of like, I'm a very driven person. And I love being independent. But I'm also completely realistically unable to be completely independent. And it grew, to me looking into theories about how related we all are to each other, and to the environment. And that brought me to do philosophy of disability.

Jackie Baxter  
Yeah, I mean, that's absolutely fascinating. And this kind of idea of like, identity, if that's even the right word. And I mean, you know, my experience is different to yours, and will be different to all sorts of other people's. But I definitely noticed that, when I got ill, all of the things that I could do before and that filled my life before, were suddenly things that I couldn't do, or I certainly couldn't do in the way that I wanted to do them. And so my identity just kind of almost eroded to this person that I didn't, I didn't know what this new person was. And I'm now having this sort of similar reverse experience coming out of it, where I'm like, I'm not quite sure who I am now. But yeah, you know, the identity, I think it's important, it's very important, but it also can be very difficult, I suppose. And, you know, knowing where you belong, and if you belong.

Élaina Gauthier-Mamaril  
Absolutely. And I also want to be clear that identifying as disabled is a political move that is not available to everyone, if you talk to people in black and brown communities in the UK, but also around the world. You know, I've seen studies about people in Turkey, or people in different countries in Africa, people might live with what we would call disabilities, but they would never call themselves disabled, let alone crip because of a whole host of factors. So I also want to acknowledge that me being able to say, Oh, I identify with this category, all that, is something that is kind of a privilege of where I live, what I look like, but also my education level. 

And I want to be clear, like, again, with my title, "long COVID, zombies and crip prephecies", I had to fight to keep the word crip there. Because I was told this is a slur, you can't use it. And I had to come back and being like, actually, it is being reclaimed, in a similar way to queer has been reclaimed in the LGBTQ community. 

And similarly, not all LGBTQ people like the word queer, use the word queer or identify as queer. So it's, we take it for granted now, that is just a word that we get to say. With crip, it's also something that, you know, I would never impose that word on someone else if they do not want to claim it. However, for me, I feel it is a shorthand to signal my kind of political position on disability, and one that rejects kind of respectability politics.

Jackie Baxter  
Yeah. Is it almost like, where it's something that you can call yourself or you can identify as, but if someone, sort of able bodied person, were to kind of try to impose that on you - that would feel less okay?

Élaina Gauthier-Mamaril  
I think it's tricky. I think for myself, I'm okay if an able bodied person calls me crip because I call myself that, and it's the same as if someone called me a feminist. Like, for me, that's it. But again, I don't want to speak for anyone else because they might feel like it is only a word that they can use. 

I do feel that I've encountered a lot of able bodied people who feel like Oh, I feel like I'm not allowed to say that word. And I get that. But I don't want that to be an excuse for like, not talking about it. Be like, oh, that's, that's too foreign to me, I can't do it, be like, we still need to have a discussion. Like it's okay if you don't feel comfortable saying the word or if you're unsure. But as we had like prior to recording today like asking how to pronounce my name, again, if people - you don't know someone's pronouns, you ask. If you don't know how to pronounce their name, you ask. If you don't know, like, if it's okay for you to use this word around them, you ask. And I just want people to get over the red flag of "I feel discomfort."

Jackie Baxter  
Yeah, I think this is something I'm a lot more aware of now as well, is that I think - and I'm probably guilty of this before as well - where if you kind of, you're not comfortable. I mean, you know, bereavement's an obvious one, you know, someone's lost someone close to them. And you're like, I don't know what to say. So I won't say anything, which is probably the wrong response. 

But I think we're often so worried about saying the wrong thing. That instead of, as you say, asking, or you know, what can I say? What can I do? Can I help? You know, we tend to sort of be I don't know, if it's a sort of, particularly British response, or if it's a kind of more global thing, but where we tend to just kind of be like, I don't know what to say. So I'm just going to say nothing. Which you know, I think can be very hurtful.

Élaina Gauthier-Mamaril  
Yeah, especially when you have conditions like long COVID, like ME, that are not necessarily visible, especially when you tend to your more visible symptoms in private in your home. And then when you do go out into the world that happens to be like, either you're having a better day, or you're really, you know, making a huge effort. And so to have someone be like, Oh, you don't look that sick, can actually be a lot worse than someone saying the wrong word around you.

Jackie Baxter  
Yeah, exactly. Yeah. Yeah, it's this. Just being a lot more conscious of the power of words, I think, is definitely something that I've noticed, and being mindful of what you're saying and how that can impact on other people. But also being aware that you can say the wrong thing without meaning to and learning, always learning and always trying to be better, I think, around other people. Yeah, I mean, we've so I'm sure we've been talking a whole load around this, which is absolutely amazing. Because my next question was going to be, you know, what brought you to research into long COVID. And I think you've probably kind of just answered that?

Élaina Gauthier-Mamaril  
I can specify a bit more. So Well, obviously, long COVID has been kind of in the zeitgeist for a couple of years in terms of research. And speaking from someone in the MECFS community, there was an initial kind of hope that, Okay, finally, we're going to have studies, we're going to have people pay attention to this, because the history of studies on MECFS is very poor. There are lots of reasons for this. 

One lens to look through it is that the disease has been very gendered. It was called kind of, you know, a housewives disease, a yuppie disease, even though the condition absolutely affects all genders, and also all classes of society. But it was not seen as something taken seriously, in part because women complaining about pain and symptoms has not been taken seriously in the history of medicine. 

And it was just never a hot topic for people to study, partly because there is no obvious cure. And also, I mean, this is me making an educated guess. If people are still able to kind of function, there doesn't seem to be the sense of urgency. And to be clear, a lot of people with MECFS have a very acute version where they are bed bound, and they cannot work and all these things. But I'm part of the people who can do some kind of work. And as I said, before I can pass, so a lot of us can pass in the general population. And so I think for all of those reasons, combined, there was never been a sense of urgency. 

So seeing long COVID and seeing how long COVID symptoms are intersecting a lot with MECFS symptoms, there was like this big push. And I think that doing long COVID research is important because I foresee it losing steam, even in the next 18 months, because newer, fancier, shinier things will come up. And also because COVID has been a huge social trauma on our society. And I think it is understandable that people want to move on and do other things. 

But part of my work is looking at long COVID through the lens of a mass disabling event. This is a word that comes up in a lot of disability justice activists, like leah lakshmi piepzna-samarasinha, this idea that there are millions of people. So as of March 2023, the Office for National Statistics in the UK estimates that 1.9 million in private households, so that's not including care homes and prisons, for example. So 1.9 million people in the UK have long COVID. There's over 40,000 of those that are children. And we're going to see repercussions of that for years to come. 

And so I'm looking into other post viral diseases in our history, to kind of give context. And so I've interviewed people who are polio survivors who have post polio, I'm talking to people who've researched HIV and the kind of change in trends once a cure was found for HIV, or a vaccine or like prep was found. So we have an idea of the trajectory, of what it looks like when we do find a vaccine, when we do find biomedical responses to disease, and how that is not sufficient to address the needs of people with post viral symptoms. 

And so although long COVID is new in many ways, and obviously we're in a new digital landscape, and the world is not exactly the same as it was, you know, in the 1920s, or the 1980s. It is something that we can look to how we've dealt with post viral illnesses in the past. And also remember that those people are still alive. Like those people who I spoke to who were polio survivors, they're alive, they've got married, they had children, they had careers. Like polio was not just something that exists in the past. It exists through them right now. And so thinking of moving away from COVID-19 is not the most helpful situation if we're thinking about chronic illness. And we're thinking about people living with chronic illness, and what their lives will look like for the next 50 years.

Jackie Baxter  
Yeah, I mean, this is something that again, I suppose I am in the very privileged position of never having experienced this until three and a half years ago. That it was just such a surprise to me where it was like, Oh, this has existed before. And well, why has nobody taken any notice of it. And, you know, I sort of almost feel slightly embarrassed that I had never really realized until suddenly it impacted me. And I think a lot of other people are probably in a very similar position, that they didn't realize the scale of it, or you know, any of the history of it, until suddenly it affected them. 

And I can't remember if there's even a quote, but it was something that people used to say about, you know, the point of history is to learn from it, and to do better, isn't it? And, you know, if we then forget our history, or try to ignore it, or move on from it, then you're not able to learn from it, because you're kind of just blanking it out. So I think like you say, it's important to not try to put it into the past as something we'd rather forget, and to try to move on, but also move on with the benefit of learning from it, maybe somehow?

Élaina Gauthier-Mamaril  
And that's why I bring in zombies. So again, this is contentious, a lot of very harmful and bad analogies have been made between disabled people and zombies. And I get so again, if you don't want to be called a zombie, I respect that. But I think it is still useful because I'm leaning into what I call the refusing respectability politics. So the thing about zombies is that A. for my purposes, the kind of contemporary understanding of zombies is they come in hordes, so it works with like my mass disabling analogy, but also zombies are not creatures or monsters that we think of as having anything to teach us. 

Like you can have a vampire who's like very aristocratic and has lived hundreds of years and has all this knowledge and blah, blah, blah. You don't think you can learn anything from a zombie. Zombies gross us out, they have bodily needs that we find repulsive, but they're also not like strange creatures. They are people who we know who have now been changed. So that's also why I wanted to use it, this image of the Zombie as someone who has survived the apocalypse, in this case COVID-19, in quote the wrong way. They're not able to go back to what it was before. They can't just be Phew. Thank God, now I'll just carry on with my life. They have different needs. 

But how do we as a society relate to someone like that when it's your spouse, your partner, your child, your co-worker? Do we just want to abandon these people? 

In zombie lore, traditionally, there are a few exceptions. But traditionally, the options are to kill or to cure. And that is also something that looms in the history of disability and how our societies treat disabled people. We either put them in institutions and hide them away. We literally let them die. We stop them from having children, or we try to find cures. And my position is that I'm not in principle, opposed to cures. Of course not. 

However, people keep existing while you're looking for a cure, and treating someone's existence as they are only a problem to be fixed is also very harmful. And so what do we do? What do we do with these people who are our loved ones, who were in community with us, and now they have these different needs that we don't understand. 

And my position is that zombies have actually a lot to teach us, because there is a wealth of information and wisdom that disabled communities have. But that is not always listened to. Because we don't see people with disabilities, or disabled people, as people who have knowledge to give.

Jackie Baxter  
This reminds me of somebody whose name I've forgotten, who I spoke to, who was talking about how experience is as valuable as, say, qualifications. So somebody who's had an experience of being disabled, or something else, is not useless, is not worthless, is not kind of a drain on society. Actually, they are a person that are as worthy as somebody who has spent the last three years getting a PhD, for example, you know, that experience doesn't make them less, actually, it makes them kind of equal to that other person. 

And I find that quite a kind of powerful thing to hear. Because, again, something that I've really noticed in the last few years is that I have felt kind of useless, because I couldn't do the things that were expected of me, or that I wanted to do or that, you know, kind of made me me. And that was a big problem for me.

Élaina Gauthier-Mamaril  
I recently read "what my bones know", by Stephanie Foo, which is a memoir about her having complex PTSD. And it's an excellent book, it's very difficult. So please, mind the content warnings, because it gets pretty explicit about the abuse that she suffered. But at the end, she kind of finished the book during lockdown. And she was kind of like, I got this, like, everyone was freaking out. And she's like, I'm prepared for this. And her therapist was like, yes, your brain has made you like build skills for exactly this moment. 

And that's kind of how I felt when everyone was freaking out during lockdown. I was like, this is the best I've ever felt. I feel like so prepared to face everything. And this is kind of what prompted me to look into this. Disabled people have so many built-in strategies about how to deal with uncertainty, how to deal with like fortune reversals, how to be adaptable, how to be patient, how to not panic when technology falters, how to be understanding about what is it that we actually want to achieve, and value that more than an efficient way to achieve that. And these are all things that I think we need to incorporate in society in general, but I am focusing on health care. 

And a lot of people, especially in kind of activist groups or in philosophy of disability, reject bioethics. In general, they feel bioethics is a very harmful system, and I don't disagree. However, my position is that disabled people will keep needing and wanting to access health care services. So it is a responsibility to make those more helpful and less harmful. And so that's why I work in this space that I work, but I understand it's not everybody's choice. 

But where I am right now is I do want to look into that. So I do want to look into how can we bring disabled knowledges, or "cripistomologies" as Johnson and McCraw or have coined, ideas of looking at how do we communicate our lived experience. Because it's very well and good to say all of the experience matters. But in my research on shared decision making and healthcare, that doesn't translate. If that experience isn't told in the words that a doctor is used to hearing and used to hearing as important and valuable, then that gets lost. We just kind of get to a world where it's like, pat on the head, oh, thank you for sharing. But it doesn't actually translate as No, this is actual knowledge. 

And we see this. Most recently, there's a big hullabaloo about medical professionals really lashing back against the NICE guidelines around treating MECFS. Those guidelines have been hard fough. Like people in the MECFS community have been fighting to change the guidelines for a long time, saying that what was prescribed was actually harmful and dangerous to people. And not, no one has come out as being cured by what they prescribed as gradual exercise training, and Cognitive Behavioral Therapy or CBT. No one has been cured, and some people have actively been harmed by being prescribed this treatment. And so they fought and they fought. And then finally in 2021, NICE changed the guidelines and leaned more into a pacing kind of guideline. 

And now there are people, doctors who are really committed to, for example, the CBT program, and committed to the idea that if you stop exercising, then it makes it harder. And now I'm learning this has been a position that's existed for a long time. And this actually was very involved in how people were addressing children with polio. And that also created a lot of harmful consequences, but people kind of overworking their muscles and getting worse. 

So it's not a new thing. But we're seeing this backlash. And it's really this confrontation between, we have people with lived experience who are saying this is actually harmful. And people who are invested in like, this therapy should work on paper, and therefore we have to keep prescribing it because we believe in the therapy. So who gets the last word in that debate will be interesting.

Jackie Baxter  
Yeah, yeah, definitely. I mean, I'd love to talk maybe just a little bit more about your research, and maybe what it involves?

Élaina Gauthier-Mamaril  
yeah, so I'm invested in podcasting a scholarship. So I'm actually preparing my main output for this project will be a six episode miniseries called Massively Disabled. And I am using it as kind of a research diary. So I'm trying this thing where I'm being as transparent as possible about my process. And so there will be an entire episode on my methodology and like, kind of where I'm coming from, what kind of strategies I am using to approach this. What does it mean to look at a disease like long COVID from a philosophical point of view? Like that's not something that is obvious to everyone. So I want to kind of talk about that. I mean, like, what do I have to contribute to this conversation, if I'm not like in a lab doing studies and stuff. So talking through that. 

And then weaving into what I've just kind of been talking about, like, looking at historical moments, but also like, what is happening right now with people who have Long COVID and how that echoes that. And I want to hopefully contribute a piece of archiving of this moment. So I will not have like a definitive conclusion by the end of this. And that is anathema to a lot of scholars, including a lot of philosophers. My point is kind of a snapshot of what my research is like now, because hopefully, you know, this work will keep going and we will just keep learning new things. 

And I mean, I will continue to follow lab studies and sociology studies and things like that as I move along. But right now, I really want to use podcasting as not only a way to share it with a broader audience, but really to legitimize it as a form of scholarship. So this is also for other people in academia, and saying that, you know, writing papers in a specific way, is not the only valid way to contribute to this. 

And that also reflects my own lived experience as someone with a disability, that sometimes, you know, writing those papers, is not the way that my brain works. Or it taxes me to a certain point or like, why am I putting all of this effort into something that, you know, five people will read? When you know, and you're a podcaster. You know, this, like, making podcasts is not easy. Like, it takes a lot of time. 

And I'm pushing myself because I'm doing a narrative nonfiction format, where I'm cutting and pasting and doing a lot of voiceovers, so it's not an interview podcasts, like some of my other podcasts. So it is a lot of work. And I'm working with a musician or going back and forth about doing that. So it is involved. So I want people to know that making a podcast as your output isn't easy. 

Jackie Baxter  
It's not the easy option! 

Élaina Gauthier-Mamaril  
It's not the easy option, it is actually quite hard, because we don't really have a map of what that looks like. But I'm really excited. I'm really excited to be part of this movement of scholarly podcasting. And, yeah, that's how I'm shaping my project at the moment.

Jackie Baxter  
Yeah, I mean, I love it. Because, I mean, it's almost making it more accessible, isn't it? I think, 

Élaina Gauthier-Mamaril  
hopefully! 

Jackie Baxter  
I mean, again, you know, you hear this from a lot of people that they really struggle to read, they struggle to write, but actually to listen, they find that a lot easier. So especially given the subject matter, I think it's amazing that you're able to do that. And, you know, maybe even kind of try to pave the way to make it, you know, quote unquote, okay for other people to do the same.

Élaina Gauthier-Mamaril  
And I'm also the giving myself the limit of like 15-20 Max 30 minute episodes, which, you know, when you're putting pieces together is actually a lot of time to put together. But also thinking about, you know, especially with academic podcasts, even I have a hard time listening to something that's an hour, which is basically a lecture. That's not how I want to see this, like. 

Don't get me wrong, like there will be a full reference list for each episode of all the references I consulted that went into researching the episode. And I will have a transcript for accessibility reasons, but also for people to be able to cite it. So I am thinking in an academic sort of way, so it is a research podcast. But I also want people to actually listen to it. And you know, not everyone wants to listen to like an hour and a half on eugenics.

Jackie Baxter  
Yeah, that would be quite hardcore! *laughs* Yeah, amazing. So this research, or part of this research, is what you're going to be presenting at the Edinburgh Fringe, actually, next week. So I'd love to just hear a little bit about maybe what the show is gonna kind of be? 

Élaina Gauthier-Mamaril  
Yeah, so I'm part of the Cabaret of Dangerous Ideas, which is a series that involves academics from universities across Edinburgh, to come and talk about their research in an accessible way for about 10 to 15 minutes. And then the rest is all Q&A. So it's really about engaging people and having people ask you a question. So even if you listen to this, right now, you will still get something out of it from attending in person, because you'll get to ask me questions directly. So it is a format that is built to have most of the performance time be actually a q&a. So it's really meant to engage people. 

On the eighth I am doing a double bill with Erin Sanchez, who is a ballerina, but also now works in mental health for dancers. And so she's going to be talking about mental health and dancers and what it takes to create great artists without breaking them, basically, which I love. And so I'll be doing a double bill with her. And on the 22nd it will just be me. So we'll have again, just 15 minute presentation and then basically 45 minutes of Q&A, so come with your questions. 

Also, both performances will be in tandem with a BSL interpreter. So if you, or you know, anyone in the deaf or hard of hearing community, please invite them. I will also be wearing a medical grade mask with a lip reading window. So if you don't know BSL, hopefully that will make it more accessible. Tarot will be involved. So if you're curious about that, do come, it's going to be a lot of a lot of fun. 

And I also encourage you to look at the other people performing in the Cabaret of Dangerous Ideas, because lots of people have amazing topics. And there are a lot of fun. So yeah, but the my show is "long COVID zombies and crip prophecies", and it will be at the New Town theatre. So we're associated with the Stand comedy club. So it'd be the new town Theatre on the 8th and the 22nd of August.

Jackie Baxter  
Amazing. And I will make sure that the links to get tickets for both of those shows are in the show notes. And I think you also said, you know, obviously Edinburgh is not accessible for everybody, for many, many reasons. But the show is actually going to be recorded and released at some point - is it later this year?

Élaina Gauthier-Mamaril  
I have no control over that. I'm told we're being recorded. And there will be a podcast and I will absolutely share that with you once it is out. 

Jackie Baxter  
Fantastic! Cool. Well, it sounds absolutely amazing. I really hope that I'm able to come and I hope that other people will come and ask you millions of questions to keep you busy as well.

Élaina Gauthier-Mamaril  
And it would be lovely to see long COVID people represented in the audience, because this is, this is also all for you.

Jackie Baxter  
Yeah. Well, thank you so much. And thank you for joining me today. Good luck with the performances and with the rest of your research. And yeah, thank you so much.

Élaina Gauthier-Mamaril  
Thank you very much.

Transcribed by https://otter.ai