Episode 4: Knowledges of care
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In this episode, Élaina talks to Jackie Baxter of the Long COVID Podcast and Peter Keogh, a professor of Health and Society at the Open University, about disabled knowledges of care. We trek through the history of HIV activism to better understand what is at stake when living with a chronic illness explodes the boundaries of what biomedicine can address. Oh, and this is the one where we talk about cripistemologies.
Texts mentioned in this episode:
Gays Against Genocide Pamphlet
Lisa Merri Johnson and Robert McRuer’s Cripistemologies: Introduction
Audre Lorde’s Cancer Journals
Leah Lakshmi Piepzna Samarasinha’s The Future is Disabled
J. Logan Smilges’ Crip Negativity
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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Jackie Baxter 0:00
During the lockdown in 2020, and then into 2021, it was almost like everyone was in the same boat, everyone was working from home, everything was online. So I didn't feel quite so isolated at that point, because everybody was in the same boat, everyone adapted. And it was this really amazing thing for so many people who had been excluded, you know, and I felt more included. And you know, there were 1000s and 1000s and 1000s of people who must have been feeling this for like decades beforehand. And suddenly, we all learned that all these things could be done online. And a lot of them could be done in hybrid form, or, you know, in some way that was able to include people. But a lot of things have had this kind of shift back to where everyone is so desperate to go back to normal. You know, I am doing a lot better than I was, but I still don't want to go and sit in the park because I don't want to get COVID again.
Élaina Gauthier-Mamaril 0:59
Hi! Welcome back to Massively Disabled: a long COVID research podcast. My name is Élaina Gauthier-Mamaril and I’m a philosopher of disability and your guide for today. This is our fourth episode, so if you are new you might want to go back and start at episode 1 to get the full experience, but you are also welcome to stay! Crip time is anything but linear. Ok, has everyone got their gear? Did you leave a rating and review on Apple Podcast and Spotify? Let’s make sure you do that now so that other people can find the show. So, last time we closed things off by discussing the fact that, even when the biomedical progress trajectory goes right and a virus is effectively eradicated like in the case of polio, people who are chronically ill because they got infected still fall through the cracks, through the silences in the narratives of progress. The production and dissemination of vaccines, while extremely important to help curb and, hopefully, destroy the reach of a virus, is, by its nature, a future oriented process. But what of the futurities of chronically ill epidemic survivors? How can we practice disability justice for the disabled people here and now? That is what I want to explore with you today. Jackie Baxter is the person you heard a few moments ago. I met Jackie because she is the producer of the Long COVID Podcast, where she has been interviewing various experts about long COVID since August 2021.
Jackie Baxter 2:42
I was looking at this big long summer ahead of me. And normally over the summer, I would throw my stuff in the car. And I would spend the whole time going off the mountains and cycling around the country and doing all these things with my partner. And I was seeing the summer holiday stretching in front of me thinking I can't do any of that. Isn't that utterly awful? What am I going to do with myself. And I think it was kind of tying in with when I was realising how isolating and how alone, that this made me feel. Especially at this point, I suppose this was as people were starting to go back to their quote unquote, normal, they were starting to go out and do more things because they were allowed to now and coming into the summer universes when people were going to be off, you know, on their summer holidays and things. And I thought I need a project. And I feel very alone, other people will be feeling the same. So I thought, right, well, I have all of these skills, things like editing, things like music, all of these things that I can do. And they're just kind of like, you know, sitting around not doing anything, maybe I can use some of these things to pull together some kind of lived experience stories to make people feel like they're not alone. You know, sharing stories is one way, you know, that's why support groups are quite useful. You see other people's stories, you see other people's experiences, you can learn from them in whatever way or just, you know, get that feeling of solidarity. You know, I'm not alone. I feel like I'm alone. But I'm not because there is, you know, all these other people. So that was kind of the idea was to start a podcast where I was just gonna have lived experience stories because I thought, Well, who else is going to want to come and speak to me, I had never had any experience of interviewing before. So that was a very steep learning curve. But very quickly, it just kind of sort of spiralled in this really incredible way. So I started off speaking to lift experience people who are incredibly important, but then I started also speaking to medical experts and researchers. And then I found some people who had recovered and I thought, Oh, well, that will be quite a positive thing to have. Because, you know, if they recovered, then that would maybe help helped me to find some things that will help me. So I just started pulling all these things together. And it has spiralled into this thing where I was speaking to this doctor in Texas yesterday. And this is just, this is just normal.
Élaina Gauthier-Mamaril 5:20
After 3 years of living with long COVID, Jackie has now recovered. But she has no plans to stop her advocacy and her podcast continues to reach people worldwide in need of community and resources. In some ways, we can understand Jackie’s drive to podcast as an act of disabled mutual aid: she wanted answers, so she reached out, and, in the process of interviewing over a hundred people, she created a space for long haulers, including herself, to journey together. But Jackie, by her own admission, was asking herself questions about health and illness, identity and productivity, for the first time. Prior to contracting COVID-19, she was part of the “young and healthy” able-bodied population. Other people, like Hannah, who made an appearance in episode 2, were already disabled before getting long COVID. We need to remember that the ‘newly disabled’ are not the only category of COVID long haulers, or indeed of chronically ill people, not because one group is better than the other, but because they are often concerned with different aspects of disabled life. For example, I see a lot of discourse pushing for more tests and clinical trials to find drugs to cure long COVID. People are suffering and there’s absolutely nothing wrong with wanting the scientific and medical systems to provide lasting relief. But those of us who have been living and/or studying the chronically ill life for decades may have a different perspective. This is why I turned to the people-with-HIV movements. Motivated by emerging discourse comparing the COVID-19 pandemic to the HIV epidemic, I decided to dig into HIV-related histories of activism and citizen science. Because, while COVID-19 and HIV do not operate biologically in the same way, they are both mass disabling (and deadly) viruses. But, while long COVID is in its infancy, the societies we live in have moved through multiple stages of HIV research, politics, and social narratives. So, I’m wondering if there’s something we can learn about what kinds of knowledge can help us manage uncertainty. Is there a difference between healing and curing? What happens when individual needs become a collective priority and then get re-individualised? I can’t get into everything here, but I did want to introduce you to someone.
Peter Keogh 7:59
Okay, so my name is Peter Keogh. I'm a Professor of Health and Society at the Open University in the UK. And I guess I have many years experience of researching social and kind of communitarian aspects of HIV and AIDS, particularly the HIV epidemic amongst gay men and men who have sex with men and African migrant communities in the UK, in Europe and globally and more recently been researching and teaching on broader reproductive and sexual health questions, particularly focusing on reproductive justice, and I guess, the potentiality for the creation and curation and dissemination of kind of quite radically different forms of knowledge and what they might also do within that field and what they might also do not just for reproductive justice, but questions of health and rights more generally,
Élaina Gauthier-Mamaril 9:05
Peter wanted to make it clear that he himself does not live with HIV. But he has intimate knowledge of the disease and has spent many years researching how it intersects with questions of care, sexual health, and reproductive justice.
Peter Keogh 9:19
In the very early years of the pandemic, you know, in the throughout the 1980s and early 1990s, the kinds of responses to HIV were underpinned by very distinctive epistemological, and activist traditions, gay and feminist traditions, queer kind of queer epistemologies, and, I guess cultures of care. So in the absence of biomedical responses, because we didn't have biomedical responses for the first 15, while 1617 years of the epidemic, these kind of different epistemologies, I think, predominated, and these were System Managers were not necessarily concerned with cure, because cure was something that was at that point impossible and indeed, is still impossible. Now we've tend to forget that for around HIV. But we're more concerned with care and questions of care, or I guess, kind of care related epistemologies tend to not only put up with but prize notions of, kind of well, I suppose disability or are states that are brought about through kind of ill health or non optimal health, the kind of vulnerabilities and interdependencies that we have and the ways in which health that is not optimal, creates those kinds of inter interdependencies that actually give a kind of blueprint for very different ways of living, were very different ways of organising ourselves politically, are kind of anti neoliberal and anti capitalist, I suppose, are anathema to kind of capitalist and neoliberal and technocratic logic. And then, when we saw the introduction of highly effective antiretroviral treatments in 1996, and don't get me wrong, they have really transformed things. I think that there was a, a very understandable move to embrace technocratic forms of knowledge, such as that, by which I mean, that if you take your pills now and undergo our, you know, put yourself under regimes of treatment, your health will somehow be guaranteed in the future, you know, the kind of lived experience of people who are going undergoing or going through these kind of transformative biomedical moments challenge that that actually these were by no means these kinds of certain states have certain kind of cure, that it was actually highly speculative and kind of highly risky. And, but I think what's happened, what happened at that point was that there was a kind of relinquishing of those logics and epistemologies of care of those, I guess, feminist and queer epistemologies that are linked to broader overarching social inequalities, and structural asymmetries, not only in the arena of HIV, but in various other arenas to deal with reproductive health and sexual health. We've seen a similar embracing of the technocratic that you know, so So for example, kind of long acting reversible contraceptives, are kind of technocratic solutions to kind of supposedly out of control, fertility amongst, you know, kind of people in key parts of the world. And I suppose embracing those technocratic solutions tends to blind us to not only, you know, the structural problems that are causing other things such as poverty or climate catastrophe, but also the ways in which those technologies are being used in highly punitive, I would say, kind of proto racist or proto eugenicist ways. But actually, I think my key point is that and it's emerged from the revoking of Roe vs. Wade last year is that technocratic knowledge forms, we'll just do not give us do not give activists do not give programme planners do Don't give anyone alone. They don't give anyone the kind of epistemological heft that they need to respond to the current price crises and problems that are bedevilling reproductive and sexual health.
Élaina Gauthier-Mamaril 13:50
AZT is an example of that riskiness. Originally devised, and then abandoned, as a cancer treatment, AZT was proposed by Wellcome in the UK as a treatment for HIV in 1984. Meanwhile, in the US, activists were clamouring for the drug to be fast-tracked onto the market, determined to get treatment for what was a politically overlooked yet deadly disease.The thing is, AZT was not a miracle drug. Not only did it now help everyone, but it caused death to many. This meant that lesbian, gay, and trans activists were not all united in advocating for and embracing AZT. For example, Gays Against Genocide, or GAG, was a UK protest group that called out Wellcome for, quote, “sacrificing” gay men for pharmaceutical profit. So there has always been resistance to what Peter calls the technocratic framing of health, but that doesn’t stop the fact that our mainstream understanding of health and healing skews in favour of striving for technocratic solutions. And this applies beyond HIV to reproductive health, and, I would argue, to chronic illness and long COVID. Let’s take a break and I’ll be right back.
Peter Keogh 15:32
So stuff, you know, so you see in these international, you know, these kinds of global programmes for health, for example, that I mean, certainly in my area of HIV, you know, making antiretroviral drugs available across the so called Global South, you know, is the aim. Now, things get in the way of that, such as poverty, corruption is no climate catastrophe. Now, the problem with technocratic knowledge forms is that they can't register those as anything other than confounding factors to the implementation of a biomedical programme. So they're kind of you know, they're, they're just not legible. They're not, there's nothing, there's no response that a biomedically like that a biomedical logic or a biomedical inflected logic can have to those profound basic health related problems. And, you know, we saw we saw this with COVID. What COVID has told us is what every, as we say, in Ireland, every dog on the street has always known that when infectious epidemics occur, or in fact, any health problem, they impact on poorer, more marginalised people greater and that therefore, we need to have responses to that. But of course, what emerged, certainly in the so called developed world around COVID, is that no matter how much we kind of knew that there has not been a response, I think anywhere that has actually thought about, well, what did the COVID pandemic tell us about the structural inequality in the countries were living in? You know, for example, the United Kingdom is a classic case, a deeply, deeply unequal society that was shown horribly in the demographics and the epidemiology around the COVID pandemic. Has government learned anything in response to that? No, because as soon as a vaccine becomes available, that's the kind of problem solved. This is a deeply neoliberal, very capitalistic way of thinking about technologies and the way in which technologies relate to populations and life. The structural and the political is not legible on biomedical epistemological registers. It just doesn't register. And hence, we see everything as a technocratic challenge.
Élaina Gauthier-Mamaril 18:02
All this may seem kind of depressing: if cures are currently out of reach and it’s too late to benefit from preventative measures, what are we doing? Well, that’s exactly why I argue that we need to pay attention to cripistemologies. It’s so very important to listen to individuals living with long COVID and chronic illness, but that’s just the first step. The first scoot. Roll. Crawl. You get it! We need to pay attention to the way individual narratives of illness are contributing and being shaped by broader cultural and political narratives. And, for the time being, I want to focus on the narratives of disabled world-making, or cripistemologies. Cripistemologies is a portmanteau (sorry, Helen Zaltzman) of “crip”, a reclaiming of the slur “cripple”, and “epistemologies”, or the discourses on knowledge. Acknowledging their indebtedness to Black feminist scholars like Audre Lorde, Lisa Merri Johson and Robert McRuer coined “cripistemologies” in their 2014 paper. They say: “Cripistemology, as we imagine it, does not assume epistemic privilege for the disabled person; it is quite clear in Lorde’s memoir that certain ways of knowing are actively blocked for some women living with cancer. . . . Nor does cripistemology restrict epistemic privilege to the disabled person. . . . the production of knowledge about disability comes not only from being disabled but from being with and near disability, thinking through disabled sensations and situations, whether yours or your friend’s.” In Crip Negativity, J. Logan Smilges makes the case for “crip” as a transformative process rather than always and only an identity. In other words, someone doesn’t always have to identify as crip to do crip, to be cripping. As a Spinozist, I am partial to this interpretation. But, then, how should we define cripistemologies and why are they relevant for our research into long COVID? I think that it’s about refusing the crisis paradigm. The way our current pandemic is being handled included an acute, crisis phase, and now we are supposed to return to a pre-crisis existence. But epidemic survivors are still living with ongoing trauma, including debilitating physical symptoms. This is where care work must come in. Care work takes the long, non-linear, bumpy and painful long view of human existence. In “The Future is Disabled”, Leah Lakshmi Piepzna-Samarasinha reflects on the ways in which disabled mutual aid is different from non-disabled mutual aid. Many of those disabled practices involve community and political organising to create webs of care that acknowledge the labour, and sometimes violence, involved in caring for each other and for ourselves. There is a commitment to trying to build sustainable rather than only emergency care relations. But this means engaging in slow processes, trying, failing, and adapting to individual needs and different community dynamics. The work that disability justice practitioners are doing on the ground, from organising home food deliveries, to doing the dishes for a friend, or joining a rota to help a wheelchair-using touring artist safely go to the toilet twice a day is neither scalable nor replicable in a way that is legible to health policy.
If we have a problem of legibility, I don't want to put it all on disabled people, queer people, people who have reproductive health needs, to make that legible. Like, I feel like both sides need to work on how to understand each other. And I think a lot of people who've lived with illness have educated themselves on biomedical things, and the opposite has not happened. So maybe the question is: How can biomedicine (or, can it?) help us move towards a future where there is not this strict vertical hierarchy of one knowledge is better than the other?
Peter Keogh 22:35
Yeah. That's a really that's a really difficult one. I guess. One of the things that I'm concerned about is less about biomedical knowledge forms, and more about how groups of people and communities of people kind of organising around say, a health concern or disability, how they negotiate the tension between living alongside and rubbing alongside a kind of biomedical edifice, you know, epidemiologists, the lab scientists, the clinicians that are working in this field, that you have to both as somebody who may have a particular condition or whatever deal with, but I saw how those communities and groups inhabit an epistemological space that really prioritises their kind of lived experiences. And I think my critique has been as follows. You really made me have to think about this to articulate it. My critique has been Elena that that we really need a kind of strengthening, we really need to strengthen the epistemological basis upon which these communities and groups are producing the knowledge that is kind of helpful. Yeah. So I think that in key areas of reproductive and sexual health, the political has been eviscerated, it's just been removed, and thus it leaves those communities without any kind of epistemological underpinnings. And as a consequence, I think that when it comes to their relationships of biomedicine, Biomedicine which they must, must have a relationship with, of course, they find themselves powerless. And I think that's my point. I think that we, as knowledge brokers, and when I say we, I'm talking about, I guess, researchers who are working alongside are part of kind of activist communities. We really need to work on really beefing up the theory and underpinnings of this work and really, I guess claiming the political here, because Biomedicine ism way to do that?
Élaina Gauthier-Mamaril 25:04
And do you think this kind of hierarchy is created? Because cultures of care and epistemologies of care are fine to make do?
Peter Keogh 25:14
Yes, yes, yes, absolutely. Everything. Yeah, that's exactly the story of HIV, it was fine. You know, you could have all of these kind of, you know, kind of notions of, you know, every Okay, so before the before the treatments, everyone was going to peer support groups, you know, and having Reiki and, you know, eating well and cooking together, and then that was kind of considered, well, that was fine. And now we have the treatment, you can stop doing that, and you can go back to work. Yeah. And that's precisely I think, I kind of logic that really really predominates. And actually, where it's at, is going to the support group, that's where it's at. That's life. You know, that's, that's what we should be focusing on. Because that that is another construction of health, that I think is, is a more fruitful and sustaining construction of health. That is, that's better for everything, it's better for the environment, it's, it's better for well being, it's better for social connection, etc. But yeah, that idea that we're just kind of doing this until until the doctors create the you know, the scientists create the miracle cure, it really feels like a really, it's a very what's the wording, it's kind of feels quite diluted. Because the one thing we also have found with HIV is that time after time, and time after time, you're told there's a breakthrough, you know, there's another breakthrough, not only do we have, you know, treatments that work, but now the treatments are kind of you can take them every just one pill a day. Now you can take them as an implant, so you don't even have to think about them. Well, we still have quote unquote, problems with adherence, the promise that this is going to end HIV has not come about and it continues, year after year not to come about. And this is not to say that these technologies are amazing, aren't amazing, because they are and they have transformed people's lives. But kind of waiting for them to solve all our problems is really, I wouldn't advise that that doesn't seem very advisable to me.
Élaina Gauthier-Mamaril 27:25
Arguably, the technocratic solution for COVID has come and gone: the vaccines. Once vaccines were available, everyone was encouraged to go back to work and socialize publicly to boost the economy. Political lines were drawn between anti-vaxxers and those who, quote, “follow the science”. But now, even the latter group has accepted COVID-minimising narratives, mostly because that is what governments and employers are promoting. In the face of public health officials claiming that the death of disabled people showed an “encouraging” trend in the progression of the virus and of heads of state that declared the pandemic over for economic reasons, we need to crip more. We need a crip revolution. If there’s one thing you take away from this episode, it is that disabled knowledge is the result of collective processes of living. It is NOT about claiming that someone has special insight just because they are disabled. That would be an essentialist position. There is nothing inherently pure or authentic about a disabled person that makes them better (or worse) at learning and knowing about the world. Instead, cripistemologies is about the wealth of knowledge developed by many disabled people who have had to adapt to an ableist world, who have made, created, hacked their way into surviving another day. We’re all trundling through this apocalyptic world, and it gets messy. Sometimes, I wonder what my role is a philosopher of disability. Theory alone will save no one. But I think Peter makes a compelling point that theory can benefit practice. And this is the role of health humanities researchers.
Peter Keogh 29:20
With certainly with reproductive justice activists that I work with, they're, they're far kind of more theoretically informed than I am and far kind of, well, of course, they're far smarter than I am. But you know, I think that kind of theory exists, but I actually do not want I think it exists in activist networks, but where it doesn't exist. I think this is it. It doesn't exist in the cadre of people who are designing kind of programmes health programmes, that kind of professionalised communitarians I think that's that that is a problem. But yes, I think that the role of the researcher is this and That certainly those of us working in the so called Social Sciences should definitely be shifting our epistemological basis, away from the generation of knowledge for replicable, scalable interventions that are going to cure everyone. And more into how do we support knowledge as of care, you know, so that we're so that people aren't hanging around waiting for a cure, but actually getting on with fulfilling lives in the midst of long term conditions or disabilities and things like that.
Élaina Gauthier-Mamaril 30:37
So, there you have it. All we have to do is seek to live fulfilling lives. You think I’m being sarcastic, but I’m not! It’s just that it takes a lot of conditions for us to figure out what exactly that means. Luckily, we don’t have to do it alone. Jackie, what is the most surprising thing you’ve learned since getting sick with long COVID?
Jackie Baxter 31:04
The things that have helped me and the things that seem to be helping a lot of other people are the sorts of things that I would have totally poo pooed from the start, you know, I think before I got ill, I had doctors and medical professionals probably a little unfairly, up on this kind of pedestal, because that was my experience, up until that point, you get sick, you go to your doctor, your doctor gives you a pill, and you get better, and you move on with your life. And you know, that was my experience up till that point, like the worst thing I've ever had was tonsillitis. And that was horrible. But, you know, it went away after like a week. And you know, and that was just kind of how I that was my experience of medical system. And I think that's probably common to a lot of people up until the point when they get sick. And, and then suddenly, this thing happened to me. And nobody knew what it was, when I was was ill, it was right at the start of the pandemic. So it wasn't even that the doctors didn't know what was going on, it was actually that they didn't even have the bandwidth to speak to me at that point. So you know, out of kind of necessity, I had to sort of hack my own way through this. And oh, my goodness, I did a lot of the wrong things. I still do some of the wrong things. But it took me quite a long time to realise what the wrong things were. But, you know, I think from the start, I was kind of like, right, well, I just need to find the right pill. And eventually the doctor will give me this and, and then realising that actually, there wasn't one. And the doctors didn't really know what to do. And that actually, I knew more than some of the doctors did just from having explored stuff myself and spoken to other people. But I think also that there were so many things that I could do, and actually could do myself. And the thought that if you worked on your breathing, my breathing was terrible. Like I would try and walk up the stairs and get horribly out of breath, I would get out of breath, like just walking across the rim some of the time, you know, so there was obviously something very, very wrong. But the thought that actually just by learning to breathe properly, again, that could make such a difference. It was like, wow, okay, so maybe the doctor doesn't know everything, maybe there are things that I could do for myself, you know, maybe Maybe I can find other things. So that then led me on to other things that I could try. And some of them have helped a lot. Some of them have not helped so much, but probably have helped a little bit. So this kind of Yeah, idea of there being so many things that were out there that were helpful. And that I could do. And that didn't cost me anything that you know that that my doctor actually wouldn't have suggested because they didn't know these things. So, so yeah, maybe that's one of the most surprising things is that actually, you know, doctors may be well intentioned. But actually, they don't know very much about this, or most of them don't anyway. And yeah, the amount of things that that I have found, that really do help are not the things that I would have thought upfront were the things that would have helped and then he would have, he would have thought getting into freezing cold water would help but it really, really does.
Élaina Gauthier-Mamaril 34:28
I think that’s enough trekking for today. Thank you for joining me and for sharing the podcast with your loved ones. Remember, rating in on Apple Podcasts and Spotify feeds the almighty algorithm and helps others to join us. Come back next time when we’ll explore the overlap between long COVID and ME/CFS and get a chance to discuss the narrative fallout of describing a chronic illness as “very, very mild”. 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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