In the sixth and final post of a monthly series exploring podcasting practice and the medical humanities, Élaina Gauthier-Mamaril reflects on the current contexts of doing Long-COVID research, the role of epistemic humility in disability practice, and leaves us with an Elegy for Cripistemologies of Chronicity.
It is bittersweet for me to write this final entry, to close this chapter of reflection on “Massively Disabled”. Revisiting the podcast has been extremely generative for myself and I loved having this framing device to reconnect with my research insights and intuitions of six months ago. But as I write this, the worst race riots since 2011 are happening in England and I’m preparing to attend my local counterdemonstration tonight. The genocide against Palestinians continues apace and academia at large is prioritising profits over justice. At the Paris Olympics, transphobes are treating the humanity of women of colour with disdain, continuing a proud Nazi tradition. Nassau County, New York, has joined North Carolina in passing mask bans in public. This is terrible news because we are going through a COVID surge (Mahase 2024), but it is also a sign of fascist police tactics aligning with eugenics, effectively saying that disabled people do not belong in public spheres, whether or not that is at a protest. Based on a search of peer-reviewed sources through the University of Sheffield, publications on Long COVID have declined by 33.6% since the same time last year; public health seems to have moved on and is, in some cases, garnering legal backing for practices of mass disablement.
I am anxious all the time. As a disabled person, it is hard to carry on my daily life when I have so many reminders that I am not wanted. As a disabled scholar, I am worried that there is nothing good enough that I can do. In the face of so many global atrocities, of violence near my home and against my neighbours, what does it mean for me to research Long COVID, to research cripistemologies of chronic illness? My employment is no more secure now than it was when I produced this episode, nor is my welcome in this country assured. The structures of my industry have created a sense of urgency, a sense that I can only function in survival mode, which raises the stakes of every task I do. I may not be here in six months, so everything I do must matter, at least that’s what I tell myself. I have a feeling that this is way too much pressure to put myself, but that’s where I’m at.
Revisiting epistemic humility
The one topic I didn’t think would feel strange to me as I listened to the final podcast episode “Where Do We Go From Here?” months after it aired, was my bold assertion about focusing on
epistemic humility as opposed to epistemic authority (Kidd and Carel 2016). At the time, I felt it would be more productive to model an interdependent and relational understanding of knowledge than to focus my efforts on making crispistemologies ‘respectable’ in the eyes of public health. I do still believe that epistemic humility understood through the lens of an anti-colonial relational knowledge practices is very important, as Indigenous scholars and activists show us (Wilson 2008, Liboiron 2021). I can feel for the version of myself who was frustrated with trying to make disabled lives, disabled wisdom, disabled desires, and disabled knowledge legible to biomedicine. I still feel that frustration today. The difference is, epistemic humility is often read as weakness in the current academic landscape. I realise this makes me sound like a parody version of a toxic bro by saying that vulnerability makes you weak, but I mostly mean that continuously and boldly affirming an ethic of epistemic humility in practice takes its toll. I had this idea that practicing epistemic humility would make my work and my concepts more approachable – more accessible, if you will – but that is not always the case. Instead, admitting the limits to one’s knowledge in public often compounds testimonial injustice (Fricker 2007, Dotson 2011), that is, it serves to justify my position as epistemically weaker, as epistemically lacking, and this does not help my legibility (Marsh 2011). It turns out, the problem is actually what I say as disabled scholar, not how I say it.
The question then becomes, how do disabled scholars escape this double bind? Asserting epistemic authority challenges the status quo, but so does practicing certain kinds of epistemic humility in a world that respects you in proportion to how decisive you are. I realise I’m saying there seems to be no solution. When you are illegible, it is hard to keep going, whether or not you choose to fight. The question all marginalised scholars, including disabled scholars, ask themselves day-in and day-out is whether it’s worth existing in this space. It is rarely a question of whether we think we have something to contribute. It has to do with the limits of the filtration system in the bunker. Disabled culture is rich and crip knowledge is powerful, but we are all, as a group, exhausted.
I was reminded recently how harmful the inability to say “I don’t know” can be. I think it is a natural instinct for humans to want to fill silence, to want to give the right answer, and, if we cannot have a right answer, we should proclaim what we do know with certainty. However, I don’t think it’s only insecurity fuelling this practice of epistemic arrogance. I think it is rooted in testimonial injustice, in our distrust in each other’s capacities as knowers. And that is not something I can change for you. I can perform competence, I can try to share my experience, I can show you statistics and introduce you to training and literature, but ultimately some of that work belongs to you. I know we are called to show grace and to allow people to make mistakes, but I am in my bitter and angry era, and I have limited spoons.
Elegy for Cripistemologies of Chronicity
In lieu of parting words, I decided to transcribe a poem I found on the bunker’s bathroom wall:
If all we know of love is a
freight proportioned to the groove
Where you have carved in bone, in
nerve, waiting touching laughing
screaming, you have laid down tracks
for bodyminds in time loops
cripping landscapes of books and
soil. For miles and miles, the length
of a crutch, the breadth of a
bed, your cargo of living
every day grows, is parcelled
out freely just because I
need it, just because you can.
How can I be proportioned?
I ask of the carved bones and
nerve that have become a
part of me. Must I stretch bend
fold break tear sew myself back
again? All I can feel is
violence and all I can dream
is foggy, fevered, and grey.
But I’ll write down the groove on
a post-it, I’ll draw it on
a napkin, then forget it
on a train just in case you
need a tissue. All I know
of love is that morsels, when
shared in chronicity, can
turn into feasts the ableds
cannot fathom. Where do we
go from here? Wherever the
massively disabled lead
us. We must become the freight.
Thank you to The Polyphony and to my wonderful editor, Alex Henry, for making this series possible. And thank you to my crip, mad, and sick kin. This was for you.
You can listen to “Where Do We Go From Here?” by clicking this link 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.
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 is a crip Filipinx philosopher of disability based in Sheffield. She holds a PhD in philosophy from the University of Aberdeen and is currently a research associate for iHuman’s Wellcome Anti-ableist Research Culture project at the University of Sheffield. Massively Disabled is her first research podcast, but she also produces Philosophy Casting Call, Bookshelf Remix, and Women of Questionable Morals.
Dickinson, Emily. 1997. The Complete Poems of Emily Dickinson. Edited by Thomas Herbert Johnson. Boston: Back Bay Books, Little, Brown and Co.
Fricker, Miranda. 2007. ‘Testimonial Injustice’. In Epistemic Injustice: Power and the Ethics of Knowing, edited by Miranda Fricker, 0. Oxford University Press. https://doi.org/10.1093/acprof:oso/9780198237907.003.0002.
Kidd, Ian James, and Havi Carel. 2017. ‘Epistemic Injustice and Illness’. Journal of Applied Philosophy 34 (2): 172–90. https://doi.org/10.1111/japp.12172.
Liboiron, Max. 2021. Pollution Is Colonialism. Durham: Duke University Press.
Mahase, Elisabeth. 2024. ‘Covid-19: Are We Seeing a Summer Wave?’ BMJ 386 (July):q1496. https://doi.org/10.1136/bmj.q1496.
Marsh, Gerald. 2011. ‘Trust, Testimony, and Prejudice in the Credibility Economy’. Hypatia 26 (2): 280–93.
Samuels, Ellen. 2024. ‘Elegy for a Mask Mandate’. In Disability Intimacy: Essans on Love, Care, and Desire, edited by Alice Wong, 1st ed., 114–15. Penguin Random House.
Wilson, Shawn. 2008. Research Is Ceremony: Indigenous Research Methods. Halifax Winnipeg: Fernwood Publishing.
