Episode 1: Welcome to base camp
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Welcome to the Massively Disabled base camp! We’re glad you’ve made it. This is where you’ll meet Élaina and get answers to the questions that keep you up at night. Questions like “What is a long COVID research podcast?” and “Why is a philosopher talking to me about long COVID?”. Don’t worry, we’re all learning together. Let the adventure begin!
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Episode 1: Welcome to base camp
Morgan Baker 0:00
I do very much feel like I'm playing a role when I'm seeing a clinician for the first time. The sick role is an MCAT flashcard, a medical school admissions test flashcard. When people are labelled as sick, then they start to act sick. And they start to, like, let go of some of their responsibilities, and they start to expect more in terms of care from others and this is perceived as a bad thing: needing help from others. I swear to God, it is in my flashcard deck!
Élaina Gauthier-Mamaril 0:42
Hey, are you okay? I know it's a bit dark. Let me find a torch.
Okay, that's better. Hi. Welcome to Massively Disabled, a long COVID research podcast. Please don't mind the smell. I've been sheltering the cellar for a while and there's not a lot of airflow. Not ideal under the circumstances, I know. But you gotta do what you gotta do in the apocalypse, right? Oh, right, you have no idea who I am! My name is Élaina Gauthier-Mamaril. And I'm a disabled philosopher of disability. How is that relevant? Well, that's just rude. Do you want to go back out there alone? No, I didn't think so.
The plan is, over the next six episodes, to find out more about long COVID, a disease characteristic of people who still have symptoms after a COVID-19 infection, and the questions it forces us to ask about how we treat disabled people in our society. Disability activists like Leah Lakshmi Piepzna-Samarasinha, have called attention to COVID-19 as a mass disabling event that has ushered millions of people into a disabled reality, sometimes for the first time, sometimes in addition to living with other conditions. As a philosopher, I want to investigate what a mass disabling event means for how we live together. And as a disabled philosopher, I'm investing in finding out how managing mass disablement affects health care policy and services. I hope we can stick together.
I'll introduce you to more people along the way, it's actually quite hard to get a long COVID diagnosis, which is why I frame my question this way. Do you identify as someone who has long COVID?
Morgan Baker 2:25
I do. I can say more about what that means? I think that… Well, I have complicated feelings about long COVID as a label, I think it's more useful for some things and much less helpful for others. I think as a marker of a person impacted by an event, it is nice to have a collective label that marks this particular iteration of my illness as the result of COVID and the COVID-19 pandemic. But then I think that there are other things for which the label long COVID is less useful. I think that, you know, there's a long COVID support group in Buffalo that runs out of a local hospital and my flavour of long COVID is very different from the people who have, you know, lung scarring or other kinds of organic damage that also refer to themselves as having long COVID. And so that's the way in which I think it's less useful that, you know, it can in that regard obscure more than it lets us know, but yes, to answer your question.
Élaina Gauthier-Mamaril 3:40
This is Morgan Baker. Morgan is a 23 year old black femme living with long COVID and applying to medical school in the US. At the top of the episode, you heard them mention how they feel like they have to be careful about performing the role of sick when they encounter clinicians, especially since they discovered that believing you are sick is treated as a bad thing, at least according to MCAT preparation materials. I guess I should make it clear from the start that I will proceed with the premise that people who say they have long COVID are being truthful about their experience. I will not be both-sidesing and entertaining the notion that millions of people are lying about or exaggerating their pain. I have ME/CFS, so I have first hand experience of how facing constant disbelief and suspicion about your symptoms grinds you down. But also, as a philosopher, I think it's much more interesting for me to look into the mystery of how we treat people who are dropping out of the workforce, or who now have evolving care needs because of a viral infection, not to ask myself if they're faking it. This is a case where debunking is at most harmful and is, at the very least, boring.
The severity of COVID-19 as a disease has mostly been recorded and measured in terms of its death toll. We are constantly being told that things are worse or better based on statistics of excess deaths. And indeed, a horrifying number of people have died and continue to die of the virus. But framing it as if death or full recovery are the only options is dangerously misleading. Morgan described themselves as a medical catfish, young and hot on the outside, completely falling apart on the inside. I asked her if she was told this could be a possibility after getting sick with COVID.
Morgan Baker 5:34
I am definitely not someone who received the message that I was at risk for a long COVID. And I think that actually matters a lot. I was very much on the receiving end of messages that sounded like “If you're young and healthy, you'll be fine”. “If you're young and healthy, you're not at risk for long term symptoms.” And I think that that ended up being really misleading, especially in 2020-2021 before there was more media coverage for young folks. Although that's not to say that people weren't sounding the alarm, right, like folks in the ME/CFS community and the dysautonomia communities, among other autoimmune folks as well, were saying from the jump that COVID was something that they were suspicious of as a possible, possible vector of long term disability. But that, that I think was read as fear mongering or calling wolf.
Élaina Gauthier-Mamaril 6:35
Let's take a short break. You look like you need to rehydrate.
Do you have long COVID? Are you researching long COVID? Are you a researcher researching long COVID Having long COVID? Do you have any questions about the podcast, you can contact me at massively disabled@gmail.com.
According to the UK Office for National Statistics’ March 2023 report an estimated 1.9 million people living in private households in the UK, that is 2.9% of the overall population were experiencing self-reported long COVID which is then defined as “symptoms continuing for more than four weeks after the first confirmed or suspected Coronavirus or COVID-19 infection that were not explained by something else.”
Of those 1.8 million, 762,000, which is 41%, reported their first COVID-19 infection at least two years previously. So we know that this is something that has been ongoing and people, some people recover from long-COVID, and some people still have lasting symptoms.
Now, these numbers are based on self reported data and do not account for possible incidences of long COVID in group and institutional settings like care homes and prisons. The ONS acknowledges that “long COVID is an emerging phenomenon that is not yet fully understood that these are experi mental statistics.”
If anyone has ever listened to Maintenance Phase, you know that self-reported data is tricky; there are no lab controls for how much pain I tell you I have, for example, you just have to believe me. But, sometimes, that willingness to trust is all we have. When I was 10 years old, my rheumatologist reported “excellent news”: my inflammation levels were in the single digits. I was very confused, because, at that time, I couldn’t get out of bed in the morning because I was in so much pain and the rest of the time I was essentially housebound because I was so exhausted. I didn’t know how to express this, but I knew there was a mismatch between what my charts and test results said and the fact that my life as I knew it as a 10-year old seemed to be over.
Right now, receiving a long COVID diagnosis is very difficult. So any meaningful research on how to manage the condition has to include the testimony of people who can suspect a causal link between getting infected with COVID-19 and their ongoing symptoms. We need to listen to what long haulers have to say, even though we may not have any answers. And that's really hard for people in science to do. So that's kind of why I'm here: to help you usher it along. Here's Morgan again, talking about the use of the International Classification of Diseases, or ICD, in counting cases of long COVID.
Morgan Baker 9:40
Some, some studies do choose to look at narrative, right what's written in words. But there was one study that was circulating that people were mad about, I think, in the British Medical Journal that only looked at ICD codes, as markers of persistence symptoms of COVID. And so if a code for post-COVID syndrome manifests against chronic Attention Deficit doesn't exist, you as a patient experiencing that symptom are illegible to researchers who are then going on to make claims about you know, only 10% of people have lingering symptoms after three weeks.
Élaina Gauthier-Mamaril 10:23
At this point, you might be asking yourself, why is this woman qualified to talk about a disease? Isn't she a philosopher? And you'd be right to ask that question. My work does not involve running clinical trials, working in the lab, or even crunching numbers for statistics. Mmm…Crunching… now I'm hungry. Anyway, I'm not involved in the biomedical side of things. However, as a philosopher, I am an expert at making order out of disorder, at analysing the mess and making sense of it. In other words, I look at qualifiers like “emerging” and “experimental” and try to explain the context of what seems so new and disconcerting. As scientific work kicks into gear, I am looking at the past to help us understand long COVID as a mass disabling event, and how it might be similar to other mass disabling events. Specifically, I'm interested in how we can change our understanding of agency and autonomy by adopting a cripistemological lens. But more on that later.
COVID-19 might be new, but it is not the first time the world has faced traumatic social events, and there have been laws and policies created to manage those events. We've inherited these laws and infrastructures. So whatever we decide to do now to manage long COVID, it will not appear from thin air. The goal of my research and what I want to communicate through this podcast is to focus our attention on an often ignored source of knowledge, and for lack of a better word expertise when it comes to living in the apocalypse: communities of disabled people. In philosophical terms, I want to highlight the epistemic authority of disabled people and the theories that create about living disabled lives.
Morgan mentioned earlier that some disabled communities have been sounding the alarm about the long-term effects of COVID infections. I will add that these disabled knowers are also attuned to eugenic policies that devalue disabled lives. In their book, “The Future is Disabled: Prophecies, Love Notes, and Mourning Songs”, LLPS reflects that:
“Many people, either newly disabled or affected by COVID, are getting hip to disabled organizing and perspective and skills. More people than ever are talking about and practicing access and care and centering disability justice in their organizing and everyday life. And simultaneously, we are in a time of a huge backlash. Eugenics is taken for granted, spoken about offhandedly as pundits and officials say that we must “learn to live with the virus” and “go back to normal”. Many of us can’t live with the virus, and a “return to normal” means a “return to ableist bullshit that partially receded over the last few years of immune awareness, masking, CART and ASL on Zoom, mutual aid, and remote work.”
So yes, surprise! I found a big swarm of eugenics creeping and crawling here among the potato rations. It may have spread elsewhere, so let’s keep an eye out…
Eugenics is the belief that the human race should be improved through genetic purification. The most famous example would be the Nazi’s systematic mass extermination of Jewish, Roma, queer, and disabled people in the 20th century, but there are many others, including some that are happening today. Ask me about CRISPR later. But we’ll talk about eugenics some more next time. –
We’ll definitely be meeting more disabled folks along the way and reading some critical disability literature because I have a feeling we all, ableds and disableds alike, have much to learn in terms of survival skills from disability communities. I need to go out and forage, but here are some face masks before I go. Oh, and don’t forget to subscribe and leave a review on Apple Podcasts and Spotify! It’ll help other people find our group. Stay safe and I’ll be back soon!
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 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.
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Episode 1: Welcome to base camp
Arnold, Carrie, ‘Unraveling Long COVID’s Causes and Impacts’, Hopkins Bloomberg Public Health Magazine, 2023 <https://magazine.jhsph.edu/2023/unraveling-long-covids-causes-and-impacts> [accessed 11 May 2023]
Cooper, Emily, Adam Lound, Christina J. Atchison, Matthew Whitaker, Caroline Eccles, Graham S. Cooke, and others, ‘Awareness and Perceptions of Long COVID among People in the REACT Programme: Early Insights from a Pilot Interview Study’, PLOS ONE, 18.1 (2023), e0280943 <https://doi.org/10.1371/journal.pone.0280943>
Devoto, Sarah A., ‘Long COVID and Chronic Pain: Overlapping Racial Inequalities’, Disability & Society, 38.3 (2023), 524–29 <https://doi.org/10.1080/09687599.2022.2156848>
Ducharme, Jamie, ‘Advocates Want the Government to Do More About Long COVID’, Time, 19 September 2022 <https://time.com/6213103/us-government-long-covid-response/> [accessed 11 May 2023]
Ireson, Jane, Amy Taylor, Ed Richardson, Beatrice Greenfield, and Georgina Jones, ‘Exploring Invisibility and Epistemic Injustice in Long Covid—A Citizen Science Qualitative Analysis of Patient Stories from an Online Covid Community’, Health Expectations, 25.4 (2022), 1753–65 <https://doi.org/10.1111/hex.13518>
Jeffrey, Karen, Lana Woolford, Rishma Maini, Siddharth Basetti, Ashleigh Batchelor, David Weatherill, and others, ‘Identifying Long Covid Using Electronic Health Records: A National Observational Cohort Study in Scotland’ (SSRN, 2023) <https://doi.org/10.2139/ssrn.4376992>
Lorde, Audre, and Tracy K. Smith, The Cancer Journals, Penguin Classics (New York City: Penguin Books, 2020)
Mazer, Benjamin, ‘Long COVID Could Be a “Mass Deterioration Event”’, The Atlantic, 2022 <https://www.theatlantic.com/health/archive/2022/06/long-covid-chronic-illness-disability/661285/> [accessed 11 May 2023]
Mingus, Mia, ‘You Are Not Entitled To Our Deaths: COVID, Abled Supremacy & Interdependence’, Leaving Evidence, 2022 <https://leavingevidence.wordpress.com/2022/01/16/you-are-not-entitled-to-our-deaths-covid-abled-supremacy-interdependence/> [accessed 2 June 2023]
Mizrahi, Barak, Tamar Sudry, Natalie Flaks-Manov, Yoav Yehezkelli, Nir Kalkstein, Pinchas Akiva, and others, ‘Long Covid Outcomes at One Year after Mild SARS-CoV-2 Infection: Nationwide Cohort Study’, BMJ, 2023, e072529 <https://doi.org/10.1136/bmj-2022-072529>
National Academies of Sciences, Engineering, Health and Medicine Division, Board on Health Care Services, Erin Hammers Forstag, and Laura Aiuppa Denning, ‘Patient and Caregiver Perspectives on Living with Long COVID’, in Long COVID: Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop (National Academies Press (US), 2022) <https://www.ncbi.nlm.nih.gov/books/NBK585199/> [accessed 11 May 2023]
Nittas, Vasileios, Manqi Gao, Erin A. West, Tala Ballouz, Dominik Menges, Sarah Wulf Hanson, and others, ‘Long COVID Through a Public Health Lens: An Umbrella Review’, Public Health Reviews, 43 (2022), 1604501 <https://doi.org/10.3389/phrs.2022.1604501>
Piepzna-Samarasinha, Leah Lakshmi, Care Work: Dreaming Disability Justice (Vancouver: Arsenal Pulp Press, 2018)
———, The Future Is Disabled: Prophecies, Love Notes, and Mourning Songs (Vancouver: Arsenal Pulp Press, 2022)
Spencer, Danielle, Metagnosis: Revelatory Narratives of Health and Identity (New York, NY: Oxford University Press, 2021)
White, Chris, Jenny O’Boyle, Jane Ormerod, and Risga Summers, Hearing Our Voices: Long Covid: The Impact on Our Lives (Long COVID Scotland, 2022), pp. 1–35 <https://www.parliament.scot/-/media/files/committees/covid19-recovery-committee/correspondence/2023/long-covid-scotland-impact-on-our-lives.pdf>
Wong, Alice, Year of the Tiger: An Activist’s Life (Penguin Random House, 2022)