Massively Disabled 5: Making Illness

In the fifth post of an ongoing monthly series exploring podcasting practice and the medical humanities, Élaina Gauthier-Mamaril reflects on the playful epistemic practices of disability knowledge-making that lie beyond the “happily ever after” of mainstream promises of inclusion.

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.

Long COVID Research Diary

Day 1582 of the pandemic

Content Warnings: Death, eugenics

One way we can define illness: At the latest count, 152 people in England and Wales have died from COVID-19 in mid-June 2024. An additional 1400 have died of other airborne illnesses like influenza and pneumonia and 2 million people in private households in England and Scotland report having Long COVID symptoms. I checked my local Long COVID Rehabilitation Hub and their services amount to providing self-management resources. Comparatively, the Sheffield ME & Fibromyalgia Group provide more comprehensive details on what those resources might be.

I was feeling very low when I revisited “Making Illness”, the fifth episode of Massively Disabled, as I was dreading being confronted with the disappointment my guests expressed. Disappointment that we, as a society, missed our chance at reforming our support for the chronically ill among us. I wasn’t yearning to be confronted with an echo of my despair in the face of the increasing, not decreasing, marginalisation of disabled people, with face mask bans in place in the US  and the Ugly Laws (Schweik, 2009) being resurrected through the exclusion of disabled people in public spaces and from civil action.

Instead, listening to the episode had the opposite effect. It reminded me that, although we might feel abandoned, disabled people are here for each other. So, in this diary entry, beyond the overdetermination of what we refer to as “illness”, I want to focus on ways in which disabled people should take the lead in defining disability.

“Co-production” and Disabled Epistemic Authority

It’s a little jarring to re-listen to this episode six months later. Since I first produced “Making Illness”, I have moved from a job in the medical humanities to a job in critical disability studies. However, I realise that many of the same epistemic tensions continue here, even outside of the biomedical scientific framework. We, disabled people, still have a legibility problem in the academic areas devoted to our concerns (see the previous Massively Disabled post on this). To be clear, this is not because of any ill will or for a lack of motivation. Rather, the more I think about it and live through it, the more I am convinced that we have all bought into a fantasy of co-production that is harmful in many ways. This is just one aspect of the bigger fantasy of inclusivity. We think that if we open the door, if we break the glass ceiling, if we provide mentorship and equity, diversity, and inclusion training, we can all come to the table and happily make collective decisions to forge a new future as a community.

What this utopic image does not include is the labour involved in actually working together. It may sometimes be joyful, and even empowering, to realise you now have a seat in “the room where it happens”; but this is not the case all the time. In collaborative settings roles are not neatly clear-cut and real human beings fill them. By this I mean that we must negotiate each other’s expectations and address the power dynamics at the proverbial table. Throughout my research in shared decision-making in clinical settings and, since then, in cripistemologies, I have found that it is never better to ignore the relations of power at play. Coming together for a common purpose can be beautiful and life-giving, it’s true, but it is not smooth and nor is it a constant source of happiness or peace.

Take, for example, this clip from Felicity Callard in the episode about returning to academia as a patient-expert:

Felicity Callard in “Making Illness”. For a full transcript of the episode visit the Massively Disabled site. This clip begins at 26:34.

There are two elements I want to parse out from what Felicity said here. The first is about the assumptions made by nondisabled academics about the content and possible uses of disabled knowledge. Even when the first hurdle is passed and lived experience is recognised as expertise, there are still a limited number of ways in which disabled people’s knowledge is legible to mainstream research. In Felicity’s account, there was a clear tension between wanting to work alongside disabled people such as herself and othering her, that is, positioning her contributions as representative of a “lay audience” that is external to academic practices of knowledge making. In Felicity’s, case and in my case at the moment, the disabled participant also has a professional identity within the academy, which means that we operate in relation to the research in a distinctive way: we are both insiders and outsiders. This example may seem especially salient when we are talking about co-production with disabled people in academia, but it also allows me to make a broader point about the slippery or porous nature of the exclusive/inclusive binary. This slipperiness is inconvenient because it does not give us neat, stackable, and easily interchangeable categories to place team members in. In other words, there is still a lot of work to be done after the “happily ever after” ending of mainstream promises of inclusion.

A key point of tension in co-production, whether it be interdisciplinary between academics, with non-academic team members, or between disabled and nondisabled team members, occurs when expectations are not communicated and acknowledged. Of course, acknowledgement alone isn’t enough to resolve the major differences, but it is the first step towards negotiating, as a team, what the boundaries of collaboration and knowledge production are at this time. For example, how we decide to deal with methodological or political disagreements as part of the work will largely depend on a mutual and dynamic understanding of our common goals, acceptable compromises, and various ways of working. Because ableist academia can imagine so very few ways in which disabled people can contribute to it, it can be very disconcerting when said disabled people show up and speak out in a way that, as Felicity puts it, is deemed “too disruptive or too troublesome or too different from the existing logic of collaboration”. When this happens, the priority should be to hold these tensions, leave them or work through them as may be, rather than to try and force a sense of cohesion through what Sara Ahmed calls “affective conversion” (Ahmed 2010).

I think that ultimately, the fantasy of co-production is haunted by the ghosts of the charity model of disability (Griffo 2016) and an exorcism is required. Of course, no one wants to work in a toxic environment devoid of respect, but we must learn to hold our discomfort if we are going to do solidarity work. Maybe cripping co-production involves coming to terms with its limitations and accepting temporary alliances in the name of moving through reality to build a better world.

Disabled People Playfully Defining Disability

This does not mean that I advocate for resignation. There must be a universe of avenues that fall between accepting the status quo and spinning a fantasy. The most promising are the ones that centre disabled people defining disability. I have been thinking a lot about what Mich Ciurria said in the episode about the need to define disability through playfulness as opposed to a cost-analysis or medical framework (Ciurria 2023). In the context of the systemic marginalisation of long-haulers – understood both as those of us living with chronic conditions and those for whom the “crisis capitalism” (Klein 2008) and its demands are untenable – in addition to the ongoing debilitation caused by the genocide against the Palestinian people, I have no desire to be playful. I want to be hard.

But then I realise that this is what Maria Lugones was talking about with “world”-travelling and playfulness (Lugones 1987): it is about choosing playfulness through hardship and despite the call to seriousness. Playfulness is a disregard for the rules, not because we deny their material and ideological strength, but because we refuse to invest them with absolute power. We, disabled academics, know multiple worlds exist because we travel through them as people who are never at home in the mainstream. As we reflect on making illness, or making disability, we are talking about crafting the narratives that orient our lives.

Take the current narrative around the COVID-19 pandemic for example: the desire to “return to normal at all costs” has resulted in the rise of fascist measures such as banning the use of facemasks and telling people who “need facemasks for medical reasons” that they should not attend mass gatherings, including civil protests. Historians and disabled communities alike could tell you that the rise of fascism happens after large societal upheavals including pandemics (McLaren 2020, Vieten 2020, Galofré-Villà et al. 2022, Konzelmann 2024). But we are not doomed to unthinkingly repeat the past. These are decisions that are being made by those in power, but we do not need to wait for them to act.

It is Day 1582 of the pandemic. We’re in it for the long haul.

You can listen to “Making Illness” 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

Ahmed, Sara. 2010. The Promise of Happiness. Durham [NC]: Duke University Press.

Bhanushali, Dr Kishor. 2007. ‘Changing Face of Disability Movement: From Charity to Empowerment’. SSRN Scholarly Paper. Rochester, NY. https://doi.org/10.2139/ssrn.965999.

Galofré-Vilà, Gregori, Martin McKee, María Gómez-León, and David Stuckler. 2022. ‘The 1918 Influenza Pandemic and the Rise of Italian Fascism: A Cross-City Quantitative and Historical Text Qualitative Analysis’. American Journal of Public Health 112 (2): 242–47. https://doi.org/10.2105/AJPH.2021.306574.

Griffo, Giampiero. 2014. ‘Models of Disability, Ideas of Justice, and the Challenge of Full Participation’. Modern Italy 19 (2): 147–59. https://doi.org/10.1080/13532944.2014.910502.

Klein, Naomi. 2008. The Shock Doctrine: The Rise of Disaster Capitalism. London: Penguin Books.

Konzelmann, Sue. 2024. ‘Capitalism, Austerity and Fascism’. Contributions to Political Economy 43 (1). https://academic.oup.com/cpe.

Mbuqe, Ellen. 2024. ‘Mask Bans Are a Heavy Burden for People with Disabilities’. SU News. 26 June 2024. https://news.syr.edu/blog/2024/06/26/mask-bans-are-a-heavy-burden-for-people-with-disabilities/.

McLaren, Peter. 2022. ‘Pandemic Abandonment, Panoramic Displays and Fascist Propaganda: The Month the Earth Stood Still’. Educational Philosophy and Theory 54 (2): 121–30. https://doi.org/10.1080/00131857.2020.1781787.

Office if National Statistics. n.d. ‘Deaths Registered Weekly in England and Wales, Provisional – Office for National Statistics’. Accessed 28 June 2024. https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/bulletins/deathsregisteredweeklyinenglandandwalesprovisional/weekending14june2024.

Schweik, Susan M. 2009. The Ugly Laws: Disability in Public. The History of Disability. New York: New York University.

Vieten, Ulrike M. 2020. ‘The “New Normal” and “Pandemic Populism”: The COVID-19 Crisis and Anti-Hygienic Mobilisation of the Far-Right’. Social Sciences 9 (9): 165. https://doi.org/10.3390/socsci9090165.

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