Massively Disabled 1: Welcome to Base Camp

In the first post of an ongoing monthly series on The Polyphony exploring podcasting practice in the medical humanities, Élaina Gauthier-Mamaril introduces “Massively Disabled: A Long COVID Research Podcast” and welcomes you behind the scenes and into the bunker…

A photograph of a concrete bunker built into a hillside. The bunker's door is open and out of focus lights are visible from within the otherwise black entrance. The surrounding hillside is lightly dusted with frost or snow and covered in fallen leaves, indicating early winter.
The Apocalypse Bunker. Credit: Mark Boss on Unsplash.

*Leaves and twigs shuffle and crunch under slow steps. Somewhere, in the distance, someone slips and splashes in the mud, exclaiming something rude*

Élaina, your host: Welcome to “Massively Disabled: Behind the Scenes”! Four months have passed since the release of our first episode “Welcome to base camp”, yet the weather around the bunker hasn’t changed much. It’s still wet and grey and we are still experiencing a COVID-19 surge. But let’s not stand around here in the cold; come in!

*The bunker door shuts with a thud, ominously*

Élaina: So, what did you want to know?

Editor (as audience stand-in): How did you land on “Massively Disabled” as a title for a long COVID podcast? Is long COVID a disability?

Élaina: That’s an interesting question. I suppose, for me, it’s obvious that long COVID is a disability because it disables people: it forces them to reorganise their whole lives, to deal with financial strife, to be excluded from social activities, and, not least, to question who they are now in relation to who they were before they got sick. I’m also someone who has been chronically ill for 22 years with an “invisible” episodic illness and I have personally come to identify as disabled and participated in disability culture. This is not to say that all people living with long COVID do identify as disabled; it is not my place, or anyone other than the sick person’s place, to make that call. However, “disability” for me is a political label that applies to all of us who are marginalised by society because our bodyminds cannot seamlessly flow with social norms of living together. And, if you’re still not happy with my reasons, I direct you to the UK’s definition of disability: “You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities” (UK Equality Act 2010). According to this, long COVID fits the governmental definition of a disability.

As for the reason behind the title, I was inspired by the discourse around long COVID as a “mass disabling event” that disabled activists like Leah Lakshmi Piepzna-Samarasinha have been conducting for a couple of years (Piepzna-Samarasinha 2022). Of course, the genocide of the Palestinian people in Gaza right now is the most pressing example of concerted mass disablement and I wish I could have addressed that in the podcast. For up-to-date information, I direct you to the work of Palestinian journalists like Motaz Azaiza and Hind Khoudary, as well as disability activist Imani Barbarin. From my position as a philosopher of disability, I focused on making Massively Disabled the site of my ongoing and shared investigation into the historical and structural aspects of disablement. Following Jasbir Puar’s (2017) analysis of debility in The Right to Maim, some bodies are marked for disablement; in other words, depending on where you live, becoming debilitated is not a question of fate or bad luck, it is a result of systemic oppression and injustice. As we were made aware — and then collectively promptly forgot — people of colour in the UK are the most vulnerable to dying from or being affected by COVID-19 because of the systemic economic and health injustices in this country (Iacobucci 2020). Yet, this critique of our national infrastructure has given way to individualistic narratives. I wanted Massively Disabled to be a counter-narrative, an exercise in counter-archiving.

Editor: This is a good place for me to ask you how you position your podcast in the landscape of long COVID advocacy and studies. For example, you neither have personal experience with the disease, nor are you a medical scientist.

Logo for the Massively Disabled podcast. A black circle containing the stylised outline of three people is surround by text which wraps around the images and reads 'Massively Disabled: A Long COVID Research Podcast'. The background is a colour gradient background which goes from light green on the left of the logo to light blue on the right. The logo is enclosed by a square black border.
Massively Disabled Podcast logo. Credit: Élaina Gauthier-Mamaril.

Élaina: As I’ve been following LC advocacy online, I mostly encounter personal accounts and individual calls for more tests and an end to medical gaslighting. In all honesty, doing this kind of research has been difficult for me on a personal level. It put me back in a dark place, a space I inhabited throughout most of my life dealing with unexplained symptoms and disbelief from medical systems in three different countries. I may not have experience living with long COVID, but I felt a kinship with the cries of anger and despair I was reading on the internet. People feel alone and afraid. The most vocal long-haulers seemed to be “new” to disabled living, though there are definitely people who acquired long COVID on top of their other conditions. From my position as a relative elder, I witnessed the rage against medical indifference and increasing demands for biomedical solutions with ambivalence. On one hand, it is perfectly valid to decry one’s feeling of betrayal and it’s understandable to look to medical authorities for answers since that is what we are raised to do. However, on the other hand, I had this nagging feeling that something was missing from this story of long COVID advocacy. I was unsettled by my feeling of disconnect, of temporal displacement in this, a time of mass disablement, as a disabled person. So, I took out my Scholar Shovel and started digging.

From that first affective response emerged a hypothesis: What if we have been here before? “We” refers both to us in a society and to disabled communities. War and disease are two causes for historical mass disablement, therefore there must be archival traces about how those crises were managed. This of course refers to health policies, but also to economic ones. There is a structural element at play that I believed influenced current public health policy, and I was correct. But this was only one piece of the puzzle: I wanted to uncover disabled knowledge about managing pandemics and epidemics. In the space of long COVID, there are wonderful people doing the work of amplifying the voices of long-haulers at various stages of their illness journeys, from pre-diagnosis to recovery. For example, Jackie Baxter, host of the Long COVID Podcast, has gathered an impressive archive of shared experience, expert knowledge, and tales of trial and recovery by and for long COVID sufferers. That was not the main goal with Massively Disabled. Not least because referring to living with an illness as a linear “journey” is a fraught concept. As much as I could see myself in the long COVID narratives I was reading and listening to, most of them still held on to a core of questing for a cure, of looking to biomedicine for salvation. While this is understandable, it does not reflect the complexity of disabled knowledges and political stances. Some of us experience the horizon of a cure and a narrative of progressive recovery as actively harmful to the living of our lives. I’m not saying this to be harsh, but if we are going to take long COVID seriously, not only as a discrete disease but as a mass disabling event that affects all of us, we need to make use of the subversive tools in the disability community kit and crip illness narratives.

I started off wanting to take a broad thematic and historical approach and the more I worked on each episode, the more the project morphed into a reflection on how disabled knowledges and biomedical logic can (or cannot) engage in productive dialogue. In other words, I never intended to produce a podcast where long-haulers could find news about lab trials or suggestions on how to manage their symptoms; I consciously chose to lean into my position as a knowledge broker and weave in personal testimonies with theory. I (very humbly, of course) wanted to create a portal into a pocket of disability culture. I wanted Massively Disabled to be a celebration of the partial, of fellowship in a different kind of questing.

*A pot bubbles on the hot plate. Kids are laughing over sock puppets*

I think that’s enough for today.

Editor: Maybe next time you can tell me why we’re sitting in a bunker?

Élaina: You’ll have to wait and see.

Links

You can listen to “Welcome to base camp” here or wherever you can find podcasts.

You can read the transcripts to every episode at www.massivelydisabled.com.

You can follow Massively Disabled on Instagram and Twitter @massdisabledpod.

You can support the podcast’s composer, Morgan Kluck-Keil, on Bandcamp.

You can learn more about Élaina’s work at www.elainagauthiermamaril.com.

Massively Disabled was produced with the support of the Centre for Biomedicine, Self and Society, Usher Institute, at the University of Edinburgh.

About the Author

Élaina Gauthier-Mamaril is a crip Filipinx philosopher of disability based in Scotland. She holds a PhD in philosophy from the University of Aberdeen and is currently an Interdisciplinary Research Fellow at the Centre for Biomedicine, Self and Society at the Usher Institute, which is part of the University of Edinburgh. Massively Disabled is her first research podcast, but she also produces Philosophy Casting Call, Bookshelf Remix, and Women of Questionable Morals.

References

‘Definition of Disability under the Equality Act 2010’. n.d. GOV.UK. Accessed 20 February 2024. https://www.gov.uk/definition-of-disability-under-equality-act-2010.

Iacobucci, Gareth. 2020. ‘Covid-19: Increased Risk among Ethnic Minorities Is Largely Due to Poverty and Social Disparities, Review Finds’. BMJ, October, m4099. https://doi.org/10.1136/bmj.m4099.

Piepzna-Samarasinha, Leah Lakshmi. 2022. The Future Is Disabled: Prophecies, Love Notes, and Mourning Songs. Vancouver: Arsenal Pulp Press.

Puar, Jasbir K. 2017. The Right to Maim: Debility, Capacity, Disability. Anima. Durham: Duke University Press.

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