Episode 6: Where Do We Go From Here?

• Show notes

  Welcome to the last episode of this season of the podcast. This is the one with all the claims. Élaina grapples with three themes that have emerged during this phase in the Massively Disabled journey and muses on what will come next. She is joined by Professor Nisreen Alwan, of Southampton University, and Christina Cortez, two people with lived experience of long COVID.

  Texts mentioned in the episode:

  My Cruel Teacher - Long COVID by Nisreen Alwan

  Body Politic

  Summa Contra Gentiles, Book 4, Chapter 4, translated by Rickaby, by Thomas Aquinas

  Chronic Illness, Slowness, and the Time of Writing by Mel Y. Chen, in Crip Authorship, pp. 33-37

  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.

• Transcript

  Episode 6: Where Do We Go From Here?

  Nisreen Alwan 0:00

  I think my angle in public health was very much:The professional message wasn't so much focused on the clinical aspects of how we're going to treat long COVID. It was really about "this is a problem that we have to quantify, describe, because if we don't do that we you don't realise how how significant the problem is" and then you know that you don't come up with solutions which obviously, this is the direction that the world has moved into, but very much slower than then I would have liked.

  Élaina Gauthier-Mamaril 0:58

  Hello and welcome to the 6th and final episode of Massively Disabled, a long COVID research podcast. My name is Élaina Gauthier-Mamaril, and I’m going to lead our debriefing session today. It will make more sense if you’ve listened to the prior episodes, but, even if you haven’t, you’re more than welcome to stay. I wanted us to reflect on the themes that came up in our research journey by flexing our narrative attentiveness muscle. Let’s pay close attention to what stories were shared, how knowledge was offered, and how I structured it all. I’ll give you my analysis, but I invite you to devise your own alongside me. You may see things that I missed!

  Part 1: Themes Most of all, I wanted this project to be one of contributing to a counter-archiving movement. Disabled people are here, have been here, and will continue to be here in ways that biomedicine cannot capture; I wanted my research to reflect that. At the same time, it would be misleading to omit the place that biomedicine has in disabled and chronically ill people’s lives. At this point in my reflection, I don’t think it’s responsible to act as if crip culture can evolve in total isolation from the material reality of using health services, participating in trials, and co-producing research. With this in mind, I identified three themes relevant to long COVID in our journey together.

  The first theme is something that was not new to me, but it became more apparent and urgent as I continued my research. And that is the problematic nature of the mind/body and chronic/acute binaries. Speaking with historian of medicine Kate McAllister, it became clear to me that any public health programmes we create in the UK to address long COVID will inevitably be shaped by this country’s inadequate structural support for people with chronic illnesses. The health service infrastructure as we know it today in 2023 is founded on the division of health for the “independent sick”, or those who have a chance to recover and return to the labour force and therefore be productive members of society, and the “chronically diseased” who ostensibly offer no such return on investment. As we saw with post-polio and ME/CFS, it’s not always easy to identify the source of symptoms for chronic conditions. And, historically, but also today, the mind/body distinction is not neutral. There is still a tremendous amount of stigma associated with mental health diagnosis, including the fact that you tend to be treated as someone with no or less agency than a “sane” person. With a multi-system disease like long COVID that can affect people across the mental/physical health spectrum, this kind of dualism is not helpful, especially when it comes to whose advocacy is treated seriously. At the top of the episode, you heard from Nisreen Alwan, a professor of public health at Southampton University. Nisreen gave a TEDx Talk in 2022 where she was very open about how her own experience with long COVID changed her perspective on positionality and objectivity in public health research. Here she is on the topic of why some people with long COVID resist being associated with conditions like ME/CFS that have been labelled as psychosomatic or as mental health conditions:

  Nisreen Alwan 4:34

  That sort of physical mental health divide, which is really, on the whole, it is harmful, but it's understandable that people struggling with long COVID resist mental health labels. Vecause it's a multi -it's predominantly a multi-system condition, you know, affecting different systems of the body and needs that holistic kind of support and management and just being labelled as you know, in terms of one of the areas if this is an area that they struggle with, and indeed it is, for many people, as we know, from the studies, you know, things around, you know, symptoms, like anxiety or depression or you know, cognitive cognitive difficulties, etc. So neuropsychiatric sequelae of COVID, we have good evidence of them, but a lot of the time it is part of multi-system disease. So it's not helpful, it's not really helpful to divide that. But because of the narrative, people feel this defensive and almost like you can kind of compartmentalise, you know, your symptoms, and say, "Well, I'm going to, in order to seek help and support, I could make my physical symptoms more prominent, and my maybe mental health symptoms less prominent because I need that support. And if I do it the other way around, or if I do it kind of equally, then I could go another in another kind of care pathway that doesn't appreciate the rest of my long COVID symptoms". It's not helpful to the patient. So it's not helpful for the service as well, because, you know, the whole point of the health service is to make people better, because otherwise you get more use of the health service, and there's increased cost and increased burden. So that's not good. Also, it is very, it's very painful to see because, again, this is about stigma attached to mental health. Because you know, and I think that it's still, they're still alive, and well, isn't it, and they are reflected in relation to these to kind of these multi system conditions like ME and long COVID. And that shouldn't be there because, you know, whether you have mental health symptoms as part of a multi-system condition, or whether they have them as a kind of that on their own, that shouldn't be there.

  Élaina Gauthier-Mamaril 6:53

  Following from this, the second theme is the need to recognise the epistemic authority of disabled and sick people. Not only do we develop tons of knowledge from our lived experience, we are the primary stakeholders in our health and wellbeing. As such, our agency must be recognised. Coming into this podcasting project, I was looking for ways to make disabled knowledge legible to biomedicine, but now I’m not so sure that was the right question. I mean, I don’t think we should give up on the concept in general, but right now it’s not the hill I’m willing to die on. I’ll speak more on this with Theme 3, so for now let’s highlight the negative consequences of disregarding the epistemic authority of disabled people. I spoke to Christina Cortez, who reached out to me through Body Politic, a queer feminist wellness collective that launched a COVID-19 support group in 2020. Christina’s long COVID symptoms included respiratory and cardiac issues, but she was reluctant to go to the hospital. So she started tracking her symptoms to at least have some data ready for her medical appointments. She still faced some issues.

  Christina Cortez 8:13

  But, fot them, I didn't really have any issues. They were pretty much up front. They knew my general history, what was going on before with my asthma. The cardiologist was the main issue that I had. And the pulmonologist was really nice, too. I didn't have any issues with her.

  Élaina Gauthier-Mamaril 8:33

  What kind of issues did you encounter?

  Christina Cortez 8:38

  For the cardiologist? He came in and I had told him what was going on. I had mysymptoms down every day, my oxygen and my heart rate and my temperature about three to four times a day. And I brought that into so I could show him kind of a day by day basis of what was going on. But he told me I needed to lose weight. He asked what what I was eating and the RN or the CNA that was in with him said "Well, she's Amish, you know, they garden, they freeze, they can, like they they eat healthy", and it didn't really click once he asked that question the first time like what he was insinuating until she had kind of stepped up for me that he had just said that I need to lose weight and I'll be fine my heart by heart will get back to where it should be, and it never did.

  Élaina Gauthier-Mamaril 9:40

  Christina’s situation is far from rare. Facing systemic disbelief is a form of epistemic injustice and medical trauma that can lead, in some cases, to anxiety, depression, chronic pain, and complex PTSD. Since COVID-19 is a mass-disabling event, we urgently need to develop sustainable practices to minimise this kind of harm for people living with long COVID.

  Now for theme three. As you might have noticed, these cut-across each other and are quite porous. Themes 1 and 2 build into each other and Theme 3 is no different. Instead of focusing on epistemic authority, I’m finding it more interesting to look into epistemic humility. I take my definition of humility from the mediaeval philosopher Thomas Aquinas. “"The virtue of humility", he says, "Consists in keeping oneself within one's own bounds, not reaching out to things above one, but submitting to one's superior" (Summa Contra Gent., bk. IV, ch. lv, tr. Rickaby).” To be clear, the superior Aquinas has in mind is God, which may not be up everyone’s alley. If you prefer, you could take a Spinozist twist on this and replace God with Nature. The bottom line is that I’m not trying to say that disabled people are inferior and therefore should make do with epistemic humility instead of fighting to have their epistemic authority recognised. The way I see it, “keeping oneself within one’s own bounds” doesn’t need to mean ‘making yourself small’. Instead, it’s in line with feminist and Indigenous theories of boundary and relational work. Instead of seeing yourself as a property to protect, you see yourself as an individual in relation. And not all relations are empowering. Therefore, not all knowledge is worth pursuing by everyone at all times. Biomedical agents also need to practice epistemic humility and accept that they do not and cannot have access to disabled knowledge within the bounds of biomedicine alone.This kind of relation to knowledge is in opposition to a colonial and imperialistic attitude to gathering, claiming, and using knowledge. The way I understand it, it is not virtuous to try to accumulate knowledge at all costs, including at the cost of our relational webs. The goal is not necessarily to know more, but to know better; to view wisdom as a dynamic and interdependent process, not as something to hoard. This is getting kind of heavy, so why don’t we lay down our packs and take a break.

  Do you have long COVID? Are you researching long COVID? Are you a researcher researching long COVID having a long COVID? Do you have any questions about the podcast? You can contact me at massivelydisabled@gmail.com.

  To be clear, I’m not saying we, as researchers across disciplines in general, should stop trying to identify long COVID through a biomedical or health sciences lens. At a micro level, it is not my place to tell people what lies “within their bounds”; what I can do is advocate for reflection on the existence of boundaries to knowledge. Biomedicine may not be willing or able to understand or align completely with disabled knowledge and crip culture, but this doesn’t mean we need to give up on collaboration and coalitions between the two forms of knowledge. It means that we have to invest in what Tuck and Yang call an “ethic of incommensurability”, or a process of being in relation that acknowledges deep frictions and even contradictory aims. Here’s Nisreen again:

  Nisreen Alwan 13:40

  It might be too optimistic to say we've got to have a universal, agreed diagnosis of exactly what long COVID is that applies all across the world, and everybody follows it. Because that's not even the case for many long established health conditions. But I think we are on the way to kind of establishing these criteria and guidelines because if none of the definitions, criteria, guidelines would be perfect, but you would have something to fall back and say, Well, okay, we're all following this, what are the advantages or disadvantages? How can we improve and there's something that you're measuring, to assess what people do what what happens is if you don't have that then becomes very variable and you're not really measuring the quality, you know, of the service or the quality of the all the outcomes from it. And this is what needs to be consolidated with long COVID. And I think there's been also a lot of focus on or frustration, obviously very understandable about the lack of established treatments for long COVID. But I think that there are other aspects as well that need a lot of attention, including while there is recently undergoing, you know, there's research to find the treatment, what are the mechanisms for support and acknowledgement, particularly around employment? I mean, you know, how people are coping with having that lack of... a lot of people who have long COVID don't necessarily completely stop working. But because of this episodic nature, and in many people's long COVID, you need to have some certain adjustments, for example, how can you have more support in the community around things that are current carrying responsibilities and other social activities or et cetera? I think these are aspects that are very important. And they need to be looked at as well. Because even though there might not be a definitive treatment for many people, and we hope there will be in the future. There are certainly things that you can do to support people so that they can function the best they can while having the condition. So how do we prevent that? I think, I think I, I, obviously, I think the main answer that pops out at me throughout this whole journey is that we need to be a bit more humble, dealing with uncertainty and not knowing what's going on, we need to stop kind of rushing to get an answer. Because we feel more comfortable having an answer about things because then we can have a clearer way of dealing with a problem. So I'm talking about this maybe an example in the healthcare and the health system or health and sort of healthcare professional patient context, but also in research also, and health policy. It's that rushing to kind of box and have answers, you know, pushes people and entities and organisations and bodies into this kind of simplistic categorization, because you tick that box. And I think that I think that's quite harmful in from this perspective, so I think we shouldn't be doing that. And I think that's a lot to do with the uncertainties acknowledging the uncertainties not having these judgments around them, and treating people as a whole, basically. But it's very difficult, it's very difficult, but I think that that's not all of this accusation that, you know, long COVID The simplistic false narratives that as long COVID is in your head, you know, stereotypes as a as a condition for certain population group, you know, woman or, you know, kind of middle aged woman, or whatever group off, it's been very, very, very prominent kids as well, you know, with parents having kids with long COVID linking it straight away with or they've been affected by lockdown. And it's about kind of a, you know, linked to depression or anxiety. Of course, this could be elements of having long COVID. So it could be other elements of, you know, of the of the children's experience or other people's experience. But that shouldn't, none of this should be detrimental to the carer support, you know, for long COVID. And you could give care and support without rushing into certainty about things and kind of boxing people or boxing symptoms right away. You can also offer that, in the mean time.

  Élaina Gauthier-Mamaril 18:01

  So, at this point, I’m thinking that the field of long COVID studies should lean into models of research that centre moving with and through incommensurability rather than aiming for consensus. If we are going to crip engagement and to recognise the agency of disabled people within chronic and public health, we need to move from a place of knowing our boundaries and not measuring success solely in terms of breaking them down.

  As for me, I’ll continue to try to understand long COVID as a mass disabling event, that is, as a social, political, and epistemic phenomenon. To do this, I would like to work with sociologists and employ qualitative methods in the next phases of my research. I am also working on an article that analyses the role of epistemic authority and epistemic humility as it relates to ME/CFS and I’m excited to delve deeper into the wonderful work of the What Would an HIV Doula Do? collective. The term “crip doula” was coined by crip ancestor Stacey Park Milbern and refers to someone who accompanies another who is transitioning into disabled (or differently disabled) life. In English, we usually use ‘doula’ to refer to someone accompanying a person through pregnancy, childbirth, and the post-partum period. But there are also death doulas who specialise in accompanying the dying. In this sense, doulas are there to ease an emotional transition, and, in the case of crip doulas and HIV doulas, these are generally people with lived experience of disability or illness themselves. As far as I can tell, the ‘crip doulaship’ reframes the categories of mentor or peer support through a lens of knowledge of care. It walks the fine line between recognising elders, culture, and tradition and refusing strict knowledge hierarchies. This is something I’m keen to explore some more. I’ll also be contributing a 6-part companion series to Massively Disabled to The Polyphony, a critical medical humanities project sponsored by the University of Durham, so make sure to subscribe to this podcast to get the updates! So, this is it. We’ve come to the end of the road for now. You’ll notice that we are exactly where we started. The point was not to discover new lands, but to find new ways of looking at our apocalyptic reality. Who knows if I will be able to continue this research, but I sure hope so. And I would love to hear from you! You can send your questions, comments, and reflections at massivelydisabled@gmail.com. If you learned anything at all throughout this journey, please leave a rating and review on Apple Podcasts and Spotify as this helps other people find the show. I’m going to go curl up and think about crip research.

  From "Chronic illness, Slowness and Writing by Mel Y. Chen, in "Crip Authorship".

  "In the end, writing with chronic illness or with disability is not the same as writing crip. And writing crip isn't the same as writing accessibly. Writing crip isn't necessarily related at all to access, except perhaps to trace the figure of a departure from conventional choreographies that may happen to be shared with someone else, or some others. And I'm not sure I would call that access so much as an occasion to live together profoundly. If crip obfuscates the problematic of scale, such that it seems to reject the hierarchical preferences by which inclusion, access and accommodation are organised - or even more so inclusive, accessible, and so on as properties of a thing - then I would hope for it to thrive all the more to obtain in the writing and not be scraped away by the requirements of publication. The troubled time of writing and conditions of chronic illness and under conditions of institutionalised publication intensifies the need for a poetics a generative worlding that also makes its own way into that world in a poetics that can be lived as much as it can be written. I don't know the shape of that poetics and it must not be prescriptive but I feel that it is needed more than ever."

  Until next time, yours in mass disablement, Élaina

  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 as massivelydisabled@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

• Bibliography

  Aquinas, T. (1955) Summa Contra Gentiles, Book 4, Chapter 55, Paragraph 20. Edited by J. Kenny. Translated by C.J. O’Neil. Available at: https://isidore.co/aquinas/ContraGentiles4.htm.

  Body Politic (no date) Body Politic. Available at: https://www.wearebodypolitic.com (Accessed: 7 January 2024).

  Card, M. (2020) ‘My Medical Trauma and How it Happened’, HealthyPlace, 2 June. Available at: https://www.healthyplace.com/blogs/relationshipsandmentalillness/2020/6/my-medical-trauma-and-how-it-happened (Accessed: 7 January 2024).

  Ceres, E. (2022) Childhood Medical Trauma and Its Effect on Emerging Adult Mental Health Outcomes. M.S. University of Rhode Island. Available at: https://www.proquest.com/docview/2671714306/abstract/900342E7A11F4134PQ/1 (Accessed: 7 January 2024).

  Chen, M.Y. (2023) ‘Chronic Illness, Slowness, and the Time of Writing’, in Crip Authorship: Disability as Method. 1st edn. New York City: New York University Press, pp. 33–37.

  Ferguson, J. (2021) ‘The Trauma of Disbelief’, Narcolepsy.Sleep-Disorders.net, 5 November. Available at: https://narcolepsy.sleep-disorders.net/living/medical-trauma (Accessed: 7 January 2024).

  Frost, L. (2021) ‘Navigating Medical Trauma with CPTSD | CPTSDfoundation.org’, CPTSDfoundation.org, 12 October. Available at: https://cptsdfoundation.org/2022/10/12/navigating-medical-trauma-with-cptsd/ (Accessed: 7 January 2024).

  Koenen, K.C. and Galea, S. (2015) ‘Post-traumatic stress disorder and chronic disease: open questions and future directions’, Social Psychiatry and Psychiatric Epidemiology, 50(4), pp. 511–513. Available at: https://doi.org/10.1007/s00127-015-1035-0.

  Mills, M. and Sanchez, R. (eds) (2023) Crip authorship: disability as method. New York, New York: New York University Press.

  My Cruel Teacher - Long COVID (2022). Southampton University. Available at: https://www.ted.com/talks/nisreen_alwan_my_cruel_teacher_long_covid.

  Pothemont, K. et al. (2022) ‘Patient Perspectives on Medical Trauma Related to Inflammatory Bowel Disease’, Journal of Clinical Psychology in Medical Settings, 29(3), pp. 596–607. Available at: https://doi.org/10.1007/s10880-021-09805-0.