Episode 5: Making Illness
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Step into the crip time warp with Élaina, Professor Felicity Callard, and Dr Mich Ciurria to discuss how we create knowledge of, about, and on illness. We discuss the “non-binary” category of illness, academic fantasies about research co-production, and why disabled people should be the ones who define disability. Everyone on this episode is a disabled academic with various levels of job security, all of whom made the gamble to be extremely vulnerable. I entrust them in your care.
Sources mentioned in this episode:
Very, very mild: Covid-19 symptoms and illness classification by Felicity Callard
“Extraordinary bodies: figuring physical disability in American culture and literature” by Rosemarie Garland-Thomson
Royal Free Epidemic of 1955: A Reconsideration by McEvedy and Beard
Disabled People Should Define Disability by Mich Ciurria
The Bloomsbury Guide to Philosophy of Disability, edited by Shelley Lynn Tremain
Full transcripts and references are available at www.massivelydisabled.com
Please rate and review Massively Disabled on Apple Podcasts and Spotify. This helps other people find the show.
You can follow the show on Instagram and Twitter @massdisabledpod
Hosting, producing, and editing is done by Élaina Gauthier-Mamaril
Music is by Morgan Kluck-Keil
This podcast is made with the support of the Centre for Biomedicine, Self and Society, Usher Institute, at the University of Edinburgh.
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Felicity Callard 0:00
In the devastation of the really early phases, there was that sense that maybe this would be the moment that we could really kind of shake up some of the dominant Western medical models of thinking, suffering, disease, illness, how body and mind might be thought together. And I actually felt in some ways more hopeful. And I don't have quite as much hope about that now. So there's no doubt in my mind that there's a huge amount of really interesting things going on in terms of involving people with long COVID in studies that have been funded; not nearly enough, but there is, but I'm not quite sure how much kind of epistemological transformations we're seeing.
Élaina Gauthier-Mamaril 1:22
Welcome back to Massively Disabled, a long COVID research podcast. I’m your guide, Élaina Gauthier-Mamaril, and today we’ll have a workshop on how to make an illness. If you want to go back to episode 1 or leave a rating and review on Apple Podcasts and Spotify, we’ll wait for you. Otherwise, follow me through the trees. So, first I want to allay any fears that I’m about to spin a conspiracy theory about manufactured illnesses or lab leaks. This is not that kind of podcast. Instead, this is a bit more of a creative workshop where we’ll be playing with crip time and the social and political conditions that shape what we can look at and say: “Aha! That is an illness!” And, more specifically, how we understand “chronic illnesses” like long COVID and ME/CFS. You heard from Felicity at the top of the episode:
Felicity Callard 2:22
I'm Felicity Callard, and I work in geography and the medical humanities at the University of Glasgow.
Élaina Gauthier-Mamaril 2:30
I first encountered Felicity through her writing for the Somatosphere’s “Dispatches from the pandemic” series. In her article, Felicity reflects on the UK government’s description of COVID-19 symptoms as “very, very mild for most people” as an example of how social and political narratives are used to categorise illnesses, signal service efficiency, and arrange national priorities. But what struck me the most was Professor Callard’s postscript, where she reveals the material conditions in which this article was written, namely “in snatches of time as I navigate the aftermath of suspected infection with SARS-CoV-2” during a period of labour disputes. For Felicity, thinking and writing about the “making of” COVID-19 as a “mild illness” is entangled in her lived experience with long COVID, her research interests, her job, and her social justice values and commitments. So, if you’re willing, slip into the crip time warp with me, Felicity, and another special guest later on, as we unpack what goes into “making an illness” like long COVID.
Felicity Callard 3:50
You know, I'm trained as a social scientist who also works historically, like, and I, you know, in every political movement I've been involved in to we know, we know that that illness is experienced in societal fault... like the way in which poverty discrimination actually contribute to the very kind of the making up of like, the experience of illness. How do we find a way for that to be part of what long COVID is, which was very much the desire of long COVID advocacy. And I think one of the things I would say is that sometimes the ways in which calls for more biomedical research to happen, which absolutely understand why those calls are made, but sometimes it feels as though the biomedical then gets shaved off again from the social world. And how do we keep the social world in? Because biomedicine has hardly been the saviour of political movements right? So I suppose I'm just feeling, I'm feeling.... Sometimes I feel troubled by the invocation of the biomedical or biomedical research as the thing that will solve things, save us. Yes.
Élaina Gauthier-Mamaril 5:18
In this Massively Disabled podcast journey, we’ve encountered Felicity’s point multiple times: When Morgan Baker was talking about the ambivalence of the term “long COVID”; when my brother, Félix, mentioned the coexistence of “official”, or institutionally-produced and community-produced narratives about historical events; when I wove together the testimony of Frances and Ruth about growing up with polio with the experiences of long-haulers Ed and Katie; and when Peter talked about the caring and technocratic constructions of health in the last episode. My research is both embedded in and contributing to an ecosystem of narratives around illness, and long COVID in particular. So, today, I wanted to turn to a condition that has probably been compared to long COVID the most: ME/CFS. Together, let’s parse out the construction “disability” and, dare I say, reclaim it for disabled people. The first recorded use of “myalgic encephalomyelitis” was in Los Angeles County in 1934, but it is likely that the disease has existed for much longer. Subsequent epidemics in Iceland, Adelaide (Australia), London, New York, and Durban (South Africa) erupted in the 1940s and 50s. Symptoms are varied, but they include debilitating fatigue that is not improved with rest, post-exertional malaise (PEM) after physical and cognitive tasks, sleep disorders, and “brain fog” or cognitive issues relating to memory, difficulty speaking, finding words or numbers, and difficulty concentrating of multi-tasking. Studies from that period document physical symptoms in patients, but in 1970 McEvedy and Beard, two psychiatrists in the UK, published an article claiming that the 1955 outbreak in the Royal Free Hospital Group in London was a case of “mass hysteria” and this forever changed the landscape of how chronically fatigued people were treated by healthcare professionals. McEvedy and Beard based their theory on the fact that most people affected my ME/CFS were women (so, obviously, they must be hysterical, or what we now call “anxious”) and that any physical symptoms like dizziness, muscle fatigue, and low-grade fever could reproduced in a laboratory setting using a healthy volunteer. In short, faced with a medical mystery and systemic misogyny, the medical mainstream categorised ME/CFS as a functional neurological disease, which my chronically fatigued kin will recognise as the scientific name for “it’s all in your head”. So, when we are talking about “making a disease”, the adoption of the psychosomatic view of ME/CFS meant that the more you talked about your symptoms or the more you asked for biomedical tests, the more you were portrayed as prolonging your illness. Felicity, in your research, what has come up as the factors that make up the experience of illness?
Felicity Callard 8:39
It might seem a bit of a jump, but, so I think that some of some of the difficulty with things like long COVID, ME, is that almost the actual the production of narrative or the production of attention to those phenomena, are themselves by certain actors, seen as an indication of psychopathology. So the very act of giving more attention to symptoms, trying to document can so easily be then construed as a manifestation of someone, someone's psychopathological investment in attending too much to symptoms. So the question of documenting and writing takes on an even more kind of complex weigth, I think. I'm very, very struck by that now. It felt like in the first year of the pandemic, in some ways, there was a little bit more openness in terms of that real... I actually felt in the midst of the devastation and the millions of deaths, that sense of openness of how different illness communities were coming together to try and force change, and it feels actually that now we're at a point where things have really closed back down. And there's such a refusal to actually take seriously conditions like long COVID and ME and analogous illnesses.
Élaina Gauthier-Mamaril 10:22
This is an interlude. I'm putting together this episode and I'm really struggling with my ME symptoms. In addition, the darkness, read: sun setting at 3:30pm every day, it's really affecting me. And I have to come to terms with the fact that I really want this to be a great episode. And it probably won't. I know you're not supposed to admit that. But this is the deal I made with myself. When I started this project, this would be a research podcast that would capture where I'm at in my research, and give myself the grace to learn and grow, and keep digging, and keep researching long after this episode hits the air. So I'm just putting this in here, for myself. And for everyone else who's doing their best. I can't... It's hard for me to find words right now. But yeah, I care immensely about this project. And about everyone for whom it's made even the slightest bit of difference. But this is what I can do right now. This is the reality of me being disabled, and doing this project. And I choose not to hide that. And you can be okay with that. Or not okay. You can say it's not professional, you can say it's performative. It probably is all of those things. But one advantage of doing this kind of work, of doing podcasting work, is that I get to do this: I get to splice in a little ditty, a little bit of me,a little bit of the labour that went into making this. And even though it might not be the episode I dreamed of, it's still going to be worthwhile. Okay, back to the show.
Felicity Callard 13:13
I think that's what really sat with me when I one of the pieces that I was trying to think through, like, thinking and epidemic from the sick bed, and that sense of many people who have been ill disabled, not receiving care treatment for so long, kind of wait, like waiting. And then that sense of then the pandemic arrives. And it's almost as though No, no one would ever want a pandemic, but there's almost that sort of sense of the pandemic then might actually help unlock previous invisible. Horrific crises that have not been acknowledged. But then what happens when the people who are in a different temporality are not necessarily seeing or able yet to see what has happened previously and is still not being recognised? And when what you know, how do you hold? How do you how do you manage to hold those sort of tentative sinews of understanding and together when when people are really, really sick?
Élaina Gauthier-Mamaril 14:35
ne big difference between ME/CFS and long COVID is that we’re pretty sure that the latter is caused by being infected by a specific virus: SARS-CoV-2. We can’t pinpoint a similar single origin in the case of ME. This makes developing treatments extra difficult. So, in the absence of firm biomedical data, the psychosomatic diagnosis became the most popular. This means that recommended treatments had to do with training the patient to “re-condition” themselves, that is, to snap out of the mistaken belief that they are ill. NICE, the National Institute for Health and Care Excellence, which is an English evidence-based organisation that produces recommendations for medical professionals, recommended graded exercise therapy (or GET) and cognitive behavioural therapy (or CBT) to treat people with ME/CFS. The thing is, chronically fatigued people report getting much worse when they try to push their bodies according to an arbitrary progressive exercise regime. And, on the flip side, no study has been able to demonstrate that anyone was cured by GET. CBT has helped some people manage their symptoms, but, again, no one has been cured and plenty of people have been alienated. For many years, advocacy groups like ME Action UK have been fighting to get NICE to amend its guidelines and that finally happened in 2021. GET was removed as a recommended treatment and CBT was demoted to being a part of a symptoms management plan, and boy, were some doctors not happy about that. I say all of this to pave the way for my main argument: that disabled people should define disability. When we are dealing with uncertainty and suffering, all narratives are not equal. In the case of ME/CFS, giving the interpretation of a sub-group of medical doctors, psychiatrists, epistemic authority over people with lived experience caused tremendous amounts of harm to millions of people. I want to say that this doesn’t have to be our legacy. We don’t need to reproduce the same mistakes with long COVID. Would you like to introduce yourself and state your name?
Mich Ciurria 17:08
Sure, it's Mich Ciurria and I'm a philosophy professor in St. Louis. And I'm a disabled philosopher. So and I work in ethics, critical disability theory, and queer theory and feminist philosophy, primarily.
Élaina Gauthier-Mamaril 17:28
Why do you believe disabled people should define disability?
Mich Ciurria 17:33
In my blog posts on this topic, I say that we don't let institutions define race. We don't let institutions define gender. So why should we let them define disability? And by that I basically mean that most philosophers agree that race and gender are social constructs. They're not biological facts, let alone medical conditions. So like most people agree, for example, with Beauvoir's for statement that "One is not born, but rather becomes a woman", which implies that gender is a social construct. But yet, a lot of philosophers, maybe most philosophers, subscribe to the idea that disability is a medical condition. So if disability is a medical condition, then medical professionals should define it and medical professionals are overwhelmingly non disabled. So you have like a group of non disabled people defining disability. And we wouldn't really accept that for gender or race. I basically think that disabled people should reclaim the definition of disability and define it on our own terms, for a lot of reasons, and one is that as disabled people, we have epistemic authority on that subject because it's characterised by our day to day; it's part of our day to day experiences. And another reason is that when non disabled people define disability, they tend to define it in exclusively negative terms, as you know, like a tragic impairment. So they don't, they're you know, they exclude the positive dimensions of disability and crip culture. So it pretty much just erases crip, erases crip culture and crip pride.
Élaina Gauthier-Mamaril 19:11
What are sort of the advantages of viewing disability through crip culture?
Mich Ciurria 19:15
So I find it interesting, Rosemarie Garland-Thomson, I think,at some point, she defines able bodiedness as the embodiment of a certain type of cultural capital. So when you become disabled, you lose that cultural capital. And that's something that non disabled people fear. So they'll often try to like hide disabilities. And if you're disabled you don't have that fear because you don't have the cultural capital to lose in the first place. So there's I think, there's just less overall fear. There's less... Yeah, so there's not that fear of becoming disabled or that same sort of body negativity, which is associated with that fear, like the fear of looking disabled or looking impaired, is like less prevalent in crip culture, I would say. But that's not to say that disabled people are fearless. Or, of course we have fears, but just not some of those, those fears that are so deeply entrenched in abled bodied culture about the body, and like the appearance of the body, the functioning of the body and the cultural capital associated with a certain type of body.
Élaina Gauthier-Mamaril 20:31
The concept of crip pride, or, more broadly, disabled pride, is not universally accepted. For example, if you are chronically ill and in a lot of pain, you probably don’t see that as a positive thing to be celebrated. But I do think there are advantages to participating in disabled kinship, even if identification will never be complete. Mich introduced me to the term cripqueer and it’s a concept I find very useful to think about what it means to live with a chronic condition like ME or long COVID.
Mich Ciurria 21:04
Well, first of all, I'll say I think some people use the term cripqueer to refer to people who are queer and disabled, so that that would apply to me. But I also, I've actually used it as shorthand to refer to queerly disabled people. So people who are not necessarily disabled according to standard definitions of disability, like the medical model, and the social model. So I would be a cripqueer queer person using my terminology, so I use the term cripqueer to refer to clearly disabled people like me. And by that I mean that I'm not unambiguously disabled, according to the medical model and the social model. I'm not unambiguously disabled, according to the medical model, because I have chronic fatigue syndrome, and an estimated 90% of people with ME/CFS, chronic fatigue syndrome, have not been diagnosed, according to the CDC. So that's probably actually a conservative estimate. So the vast majority don't have a diagnosis. And I would say I'm also ambiguously disabled on the traditional social model, because that model defines disability as exclusive of chronic pain. But a lot of people with chronic fatigue experienced pain and discomfort. So the social model would define that as impairment. So even on the social model, which was developed by disability activist, I'm still not unambiguously disabled. So I'm basically a borderline or like, non binary case, if you will, based on those definitions. So you know, like queer is often taken to denote, like being, you know, being on the on the border line being on the border. So that's why I basically use the term queer crip queer to describe people like me, who don't fit neatly on either side of that binary. So of course, it can be challenging to be on the border because you're excluded from accommodations and benefits that you might need and deserve. So that's the issue, like this is why a lot of disabled people don't want to be in that ambiguous position that, like liminal space, but I basically embrace that term because I think that it can be used to challenge these rigid, top down definitions of disability that exclude and marginalise a lot of people. I'm trying to use this term and embrace this term to like destabilise, essentially, the ability disability binary, which is essentially a social construct. It's like a constructed dualism, because, you know, in reality, disability lies on ability and disability lie on a continuum. So no one is like perfectly able bodied or perfectly disabled. So we've basically just created this cut off. And like, why does the cut off exist where it doe,? Of course, for the medical model, just like the definition of disability, according to the Social Security Administration, has been constructed to exclude as many people as possible from disability benefits. So they, you know, the government tries to make it difficult because of neoliberalism and austerity measures. They try to make it difficult for people to access like financial support and resources that they may need and deserve. So of course, I don't subscribe to that definition that excludes me and many other people who you know who many other disabled people like people who any normal person would think of as disabled are nonetheless excluded from benefits and accommodations because we, we don't have the right diagnosis or we don't have the right sort of medical certification or the right symptomatic profile. So for that reason, we're excluded even if there's like no functional difference between us and someone who's on disability benefits. So it's basically the government definition of disability which is supported by the medical model is very exclusionary and deliberately exclusionary. But the social model also has exclusionary implications if your disability isn't clearly a result... so if I guess if your disability involves like chronic pain and discomfort, and things that are defined as impairment on the social model, then you're excluded from peer support resources that you may also need and be entitled to, right? I think cripqueer can kind of illustrate the constructed nature of that definition and how it's rooted in capitalism and an exclusionary, gatekeeping form of politics.
Élaina Gauthier-Mamaril 25:48
Once we accept that disabled people should be the ones defining disability, with all of its nuances, differences, and messiness, the logical next step should be to involve more disabled people in the work of science and policy. Commitments to shared decision-making, person-centred care, and patient and public engagement have been part of UK health policy for decades at this point, but they are still not easy to navigate. I think that one of the barriers to patient involvement or co-production is that “patient expertise” is not something that is legible to biomedicine. Felicity, you have a lot of experience in this area; when did you get interested in patient co-production?
Felicity Callard 26:34
I think I first became really preoccupied by patients and medicine when I was doing my PhD. And I was working on a history and a geography of agoraphobia. Fear of public spaces, so how it's translated is itself a vexed question. And so that term emerges in the in the late 19th century and there's endless kind of contestation over who, and how, who gets to determine the definitions, how it gets framed, who is seen as a person most likely to get agoraphobia is how it becomes gendered or not. And so I think that was the first, those were the first moments where I really saw some of the political stakes around knowledge making in in medicine. And I think that was given new force when for a whole variety of reas ons I... So I started my career in a geography department after my PhD, my PhD had been very interdisciplinary. My first position was in a geography department, and I ended up resigning from that department because I was very ill. And when I came back to academic research, after a number of years, I was employed as a Patient Services Researcher in a unit at what was then called the Institute of Psychiatry, at King's College London. And the role was for a services researcher to work with this massive biomedical research centre to feed in patient knowledge. And so I think that really bears on on your question about what kind of expertise is this imagined to be, and I was, I was very, very struck by the different fantasies of different researchers about what my role was. And some absolutely thought it was to provide knowledge. And others thought it was to help them recruit other patients into existing research. And some of them thought that it was kind of nice to have someone who could provide some kind of lay take off and I said, but I'm not. I mean, that's really complicated because I am positioned inside the academy and I've been professionalised within, inside the academy, so your imaginary of lay doesn't really fit. So that's when I, that's when all my initial preoccupation with what it means for patient knowledge to be part of debates and models and formations. I think that's when things became really intense, because we were actually working collaboratively in this new newly funded biomedical research centre. Now, with the with the rhetoric of co-production, that is everywhere and the co- so often is imagined as this kind of friendly people working together to co-produce, but actually, what does that mean when there are radically different takes on even what the phenomenon is that people are meant to be co producing knowledge about? So, yes, and that that endless, that endless problem of being being so aware of how much can you push in certain quarters before you're actually seen as too disruptive or too troublesome or too different from what the existing logic of collaboration might might mean? Yes, I'm going to think it's very much shaped how I think about interdisciplinarity and the profound imbalances of power that shape any interdisciplinary collaboration.
Élaina Gauthier-Mamaril 31:08
Remembering what Peter said in the last episode about not waiting for biomedicine to change before we find epistemic foundations for our activism, I’ve been thinking a lot about what it would mean to crip engagement. I think about Morgan and “performing the sick person” and about what Mich was just saying about being “disabled non-binary” when you live at the margins of both the medical diagnostic process and the social model’s definition of disability. And I keep coming back to something Robert Smith said: “The only way for performance to hold some element of subversive potential is to be playful.” The more I work on epistemic authority in healthcare, the more I’m convinced that trying to get our expertise recognised is only one path among many, and one that I’m not particularly interested in right now. Instead, I want to see what happens if we dare to be more playful.
Mich Ciurria 32:07
So I basically draw on Maria Lugones's theory of playfulness to argue that we should define disability in a playful way. So Lugones talks about how she felt like she always needed to be serious in straight and white Anglo worlds, whereas she could be more playful in lesbian and Argentine worlds where she felt more at home. She's saying that social institutions basically demand seriousness. And that's a way of controlling and disciplining people's behaviour. So she thinks that we can create a more loving and inclusive society by embracing a more playful attitude. And I think that that is the attitude that we should bring to constructing disability.
Élaina Gauthier-Mamaril 32:53
So much of what keeps me motivated to work in research is being surrounded by amazing disabled scholars like Mich and Felicity. Another theme that has been coming up in our conversations is the need to attend to the material realities that underpin the possibility of collaboration, and solidarity. I'm going to have to think about it some more. But there's definitely something there. So stay tuned.
Mich Ciurria 33:19
I think that that playful attitude is useful to seeing an open future as well, because being disabled could mean many things, and it could change over time. And also that playful attitude really refutes the negativity and the seriousness of the medical model. But also, to some extent, the traditional social model. One of the reasons that playfulness appealed to me as well is that and playfulness is very central to queer theory, it comes up a lot in queer theory, but not as much in crip theory, in my experience, but I think that's very important to crip culture, not just because that is a feature of crip culture. So you know, it's descriptively accurate, but also because disabled people have to go through so much bureaucracy, and have to prove their disability over and over and over by showing that they meet the criteria of the medical establishment or the university or whichever social institution and so you can like feel the sense that it's a serious environment, and that if you don't provide the appropriate documentation, people won't take you seriously. You know, they'll dismiss you, they'll exclude you. So I feel we don't want that serious attitude in crip culture. So, you know, we don't want to operate on that same, you know, on that same like rule obsessed, sort of serious, exclusionary mentality.
Felicity Callard 34:44
I think I started off being very preoccupied by differences in kind of knowledge frameworks or epistemological questions, and then have recently become really preoccupied by how those are always underpinned by material, material questions and which seems to be at the heart of so much. I mean, this is, of course, the disability rights movement has been... that's been there from the start. But I think in terms of lots of the debates in the academy, it's not necessarily adequately acknowledged. So with the best will in the world, you know, if you want to involve people, but actually, the material realities of people's lives are such that that becomes an impossible, it becomes impossible for the university or the research institution, actually to support any kind of scenario where you could actually do engaged research or could actually draw on the expertise of either patients and or members of the public, however, that is imagined imagined.
Élaina Gauthier-Mamaril 35:58
And that’s that! I can’t move any further. I encourage you to join me in my rest and, if you want to read more about Mich and my work, we have both contributed to the new Bloomsbury Guide to Philosophy of Disability! This excellent news deserves a joyous sendoff, so here’s Mich again:
Mich Ciurria 36:27
People have asked me if I regret like coming out as disabled because I could have passed as disabled probably, because people don't assume by looking at me that I am disabled. Or sorry, I could have passed as able bodied, rather, sorry! I could have passed as able bodied. And I just I chose not to. And so people have asked, do I regret it and I definitely don't regret it at all because I have found that belonging to crip culture and having relationships, relationships with disabled people, and also just working more on crip theory, like, you know, going deeper into crip theory has been so enriching, so I don't regret it at all at all. I find crip, like crip culture and crip spaces for me to be very empowering. And what's the word? Like empowering and validating.That's my personal experience.
Élaina Gauthier-Mamaril 37:29
Massively Disabled is hosted, written and produced by me, Élaina Gauthier-Mamaril. Music is by Morgan Kluck-Keil. You can follow the podcast on Twitter and Instagram @massdisabledpod and write to us at massively disabled@gmail.com This podcast is made possible with the support of the Centre for Biomedicine, Self and Society, Usher Institute, at the University of Edinburgh.
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