Massively Disabled: A Long COVID Research Podcast

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 AquinasChronic 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.

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 BeardDisabled 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.

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 DisabledJ. 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.

This one is for the kids. Long COVID can affect anyone at any age, but growing up with a chronic illness means you are learning who you are while realising who you will never be. This one is for the epidemic survivors who are still here, still around, even though the disease that changed your life is no longer the hot topic. This one is for the people living with post-polio who were told it was all in their heads. If that sounds familiar, this one is for you too. It’s for all of us. We need to talk to each other. CN: This episode contains discussions of medical disbelief and trauma. Texts mentioned in this episode: (Referenced by Katie Bourdeau): COVID Long-Haulers Canada, Statement from the Chief Public Health Officer of Canada on July 7, 2021, Prevalence of long-term effects in individuals diagnosed with COVID-19: a living systematic review Van Lier et al: Disease Burden of 32 Infectious Diseases in the Netherlands, 2007-2011 Ruth Bridgen’s thesis: Postpolio syndrome—“We aren't dead yet” The Office of National Statistics March 2023 report I would like to thank the British Polio Fellowship for connecting me with Frances and Ruth. 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.

A philosopher, a historian, and Tucker Carlson walk into a bar… Welcome to Episode 2 of Massively Disabled, the one where Élaina lays out her methodology and rolls it up in a rucksack, ready for the road. We’re talking narrative medicine, citational practices, and the philosophical uses of history (whatever that is) to better understand how we are going to approach the topic of long COVID. The clip from Hannah Sullivan-Facknitz was taken, with permission, from a longer interview for Philosophy Casting Call: "Ethics of Kinship in the Archive w/Hannah Sullivan-Facknitz" Sources mentioned in the episode: Rosemarie Garland-Thomson’s “Eugenic World Building and Disability: The Strange World of Kazuo Ishiguro's Never Let Me Go” The Scottish Healthcare Workers Coalition calling for the return of mask mandates in hospitals The House of Lords’ Long COVID debate on 17 November 2022 Department for Work and Pensions’ “Households below average income: for financial years ending 1995 to 2022” Sara Ahmed’s “On Being Included: Racism and Diversity in Institutional Life” Michel Foucault’s “Discipline and Punish” and “History of Sexuality: Vol . 1” American Press article on Dominion Voting suing Fox News about 2020 election claims Annemarie Mol’s “The Body Multiple” Ian Hacking’s “Mad Travelers: Reflections on the Reality of Transient Mental Illness” Rita Charon’s “Narrative Medicine: Honoring the stories of illness” Danielle Spencer’s “Metagnosis: Revelatory Narratives of Health and Identity” Mich Ciurria’s “Disabled People Should Define Disability” In the spirit of intentional citing, it must be noted that the title of this episode employs the term “methodology queen”, first heard on the health and wellness debunking podcast “Maintenance Phase”, co-hosted by Aubrey Gordon and Michael Hobbes. 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.

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! Sources mentioned in this episode: The MCAT flashcards The British Medical Journal article: Long covid outcomes at one year after mild SARS-CoV-2 infection: nationwide cohort study The Office of National Statistics March 2023 report “The Future is Disabled: Prophecies, Love Notes, and Mourning Songs” by Leah Lakshmi Piepzan-Samarasinha 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 at the University of Edinburgh

“Long COVID” is the name masses of chronically ill people have claimed for themselves. But what is long COVID and what does it mean for us as a society? This is what my new podcast, Massively Disabled, explores. My name is Élaina Gauthier-Mamaril and your mission, should you choose to accept it, is to journey with me for the next 6 episodes as we try to understand long COVID as a mass disabling event. I’ll introduce you to long-haulers, polio survivors, HIV and public health scholars, and so many more nerdy and disabled experts. I can’t promise to have all the answers, but I hope you’ll help me ask the important questions. Subscribe now to Massively Disabled wherever podcasts are found and you won’t miss the first episode on the 18th of October! 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