Massively Disabled 4: Knowledges of Care

In the fourth post of an ongoing monthly series exploring podcasting practice and the medical humanities, Élaina Gauthier-Mamaril reflects on epistemologies of care and the role of disabled knowledge-brokers in managing technocratic responses to the COVID-19 pandemic.

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.

Here in the bunker, people are assigned different responsibilities. The Historians keep track of the records we brought in from the Before Times, but they also comment on the interviews the Sociologists record and transcribe. The Anthropologists are documenting various stages of bunker life, the Creative Writers have been hard at work on poems and plays, and the Philosophers are trying to figure out how we all fit in together. At the same time, we are all living: fighting over blankets, worrying about changing the HEPA filters, and playing cards. We are medical humanists, and we are in the bunker with everyone else.

In making the Knowledges of Care episode, I had to come to grips with the serious worry that my work on chronic illness and cripistemologies (the ways of knowing that come from surviving as disabled in an ableist world) was hitting a brick wall. I thought my years analysing the power imbalance between biomedical knowledge and disabled knowledge had cured me of all naïveté, but my conversation with health sociologist Peter Keogh brought me back down to a harsh reality. By recounting his experience with HIV scholarship and activism in the UK and his more recent foray into reproductive justice, Peter made me realise that fighting for recognition from biomedicine may be futile. If the logic of biomedical sciences is progress and cure, then it is no wonder that cripistemologies and the lives of disabled people remain illegible to them.

Beyond Crisis Mode

“[The] United Kingdom is a classic case, a deeply, deeply unequal society that was shown horribly in the demographics and the epidemiology around the COVID pandemic. Has our government learned anything in response to that? No, because as soon as a vaccine becomes available, that’s the kind of problem solved. This is a deeply neoliberal, very capitalistic way of thinking about technologies and the way in which technologies relate to populations and life. The structural and the political is not legible on biomedical epistemological registers. It just doesn’t register. And hence, we see everything as a technocratic challenge.”

Peter Keogh, in Knowledges of Care.
A close-up photo of a pair of hands in blue surgical gloves holding a vaccine vial and syringe. The syringe is in the vial and in the process of drawing up vaccine solution.
Drawing a COVID vaccine dose. Credit: Hakan Nural on Unsplash.

Technocratic: (political) relating to or involving experts in science or technology who have a lot of power in government or business (Cambridge Dictionary). One way of understanding technocracy is to view societal challenges as being best solved by a scientific or technological approach. According to Peter, the technocratic approach to COVID-19 was the production and distribution of vaccines: here was a proven scientific product that could be logistically managed by international governments. The discourse in countries with access to the vaccines became polarised between those who would comply with government recommendations because they “followed the science” and those who were reticent or opposed to being vaccinated. However, as the pandemic has endured and political decisions were made to prioritise economic growth, being vaccinated quickly became a free pass to ignore all other virus mitigation procedures like wearing high quality respirators indoors or advocating for increased air quality in our places of work, play, and healthcare. Because of the technocratic messaging from public health officials and employers, most people have not continued to invest in the knowledges of care they participated in pre-vaccine. However, as COVID conscious people are acutely aware, being vaccinated alone does not stop the spread of the virus. Social inequalities existed prior to the pandemic, and they have become worse since then. For a brief moment in time, it seemed we might re-evaluate our priorities as a society, but that moment was fleeting. Knowledges of care were deemed relevant in a time of crisis, but there has been no meaningful investment in sustaining care practices in the “new normal”. This is where the medical humanities come in.

Epistemological and Activist Practices

Disabled mutual aid has always existed. Disabled people have been surviving ableist societies and they have developed ways of knowing about and making worlds. This knowledge born of survival practices is called cripistemologies (Johnson and McRuer 2014). To paraphrase the editor of the New Inquiry Magazine (as cited in Das 2018), disabled or sick life is stubbornly untheoretical, yet it oozes theory. Disabled people don’t necessarily rely on theory to make sense of their lives, but they also cannot seamlessly move through an ableist world (literally and figuratively). As a result, we have created and adapted to changing affordances (Dokumaci 2023), including during the height of pandemic lockdowns and through to the present day, when people are being sectioned into psychiatric wards because they insist on wearing face masks in hospitals. Poet and disabled activist Leah Lakshmi Piepzna-Samarasinha captures the difference between disabled mutual aid and non-disabled mutual aid: the former is often small-scale, “low-key”, and built on relationships of trust. In her account of accompaniment in the academic workplace, Margaret Price (2024) stresses the non-fungibility of scribes, sign language interpreters, and live captioners for the disabled people who rely on them. Relationships of interdependence cannot be reduced to a technocratic exchange of services that happen free from social, political, moral, and emotional contexts. For example, when a Deaf person works with an interpreter, they have to trust that their meaning will be faithfully expressed; consequently, the interpreter’s knowledge of specialised vocabulary is important, but so is their standing in relation to the Deaf community. The whisper networks warning about disrespectful or unprofessional interpreters is one way the Deaf community safeguards itself. This is one example of a knowledge of disabled mutual care.

These types of knowledges resist being scaled up and legislated. There is no way to morally or legally enforce “access intimacy” (Mingus 2017); all we can do is create opportunities for trust to be built and for human beings to be accountable to one another. Now, in 2024, as data-gathering infrastructure around COVID-19 is rolled back, with fewer accurate statistics available about infection rates and deaths and mitigation protocols abolished, “following the science” becomes harder and harder for the average citizen. However, COVID conscious people, many of whom are disabled, are still organising mask blocs and coming together to rethink a safer way to be in community. I just moved to a new city, and I was delighted to join Breathe Easy Sheffield, a new group for people who want to create COVID-safer social gatherings. As Peter says in the episode, “the support group is where it’s at; that’s life”. As the technocracy leaves us behind, knowledges of care persist.

Knowledge Brokers in a Technocratic World

A black and white photo of a piece of paper with COVID-19 repeatedly written on it which has been crumpled up into a tight ball so that each iteration of the virus name is only partially visible or overlaps another.
Crumpled up COVID. Credit: Marjan Blan on Unsplash.

I recently heard journalist and podcaster Michael Hobbes say (I can’t remember if it was on Maintenance Phase or on If Books Could Kill) that what matters is what you do with power. As a fixed-term contractor for the academic industry, I don’t have a lot of power. But my foothold into academia, tenuous though it may be, does put me in a position to broker knowledges of care between institutional and community-based scholarship. I argue that this is an important role that the medical humanities can play, precisely because the social and the political are legible to us. We may not be able to convince technocratic systems to bend against their nature, but we can support and foster knowledges of care that manage systemic harms and necessary resilience.

This is admittedly a very pessimistic outlook. However, if scholars are going to, like me, continue to work within a system that is designed to marginalise, we need to relinquish our well-meaning impulse toward diplomacy. Perhaps there is a place for trying to change the systems through policies and workplace management, but that is not the only front we should focus on. Knowledges of care will continue to exist whether or not academics like me “study” them in formal settings, but what I can do is invest my time and energy contributing to a culture of praxis (Dotson 2012) that weaves theory and practise together. I can put my intellectual and theoretical labour to the service of activists and organisers, not just to try and convince the academe that disabled people matter. A combination of hard work and socio-economic, citizenship, White-passing, straight-passing, and able bodied-passing privileges has brought me to a position where I can put myself to work for my disabled kin according to my capacity. But I am only one person and I may not be able to have a career in this industry. Luckily, I am not alone in the bunker. Not only are Peter and all my other guests here with me, but thousands of medical humanists are brokering knowledges of care right now. I know who I would want by my side to navigate ontological uncertainty.

You can listen to “Knowledges of Care” 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.

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 CallBookshelf Remix, and Women of Questionable Morals.

References

Cambridge Dictionary. n.d. ‘Technocratic’. In . https://dictionary.cambridge.org/us/dictionary/english/technocratic.

Das, Jareh. 2018. ‘Here’s Martin! The Zombie as Metaphor in Taste of Flesh/Bite Me I’m Yours’. In Survival of the Sickest: The Art of Marin O’Brien, 26–29. Lonfon: Live Art Development Agency (LADA).

Dokumacı, Arseli. 2023. Activist Affordances: How Disabled People Improvise More Habitable Worlds. Durham: Duke University Press.

Dotson, Kristie. 2012. ‘How Is This Paper Philosophy?’ Comparative Philosophy 3 (1): 03–29.

Mingus, Mia. 2017. ‘Access Intimacy, Interdependence and Disability Justice’. Leaving Evidence (blog). 2017. https://leavingevidence.wordpress.com/2017/04/12/access-intimacy-interdependence-and-disability-justice/.

Piepzna-Samarasinha, Leah Lakshmi. n.d. ‘How Disabled Mutual Aid Is Different Than Abled Mutual Aid – Disability Visibility Project’. Accessed 30 May 2024. https://disabilityvisibilityproject.com/2021/10/03/how-disabled-mutual-aid-is-different-than-abled-mutual-aid/.

Price, Margaret. 2024. Crip Spacetime: Access, Failure, and Accountability in Academic Life. Durham, NC: Duke University Press.

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