Massively Disabled 2: How to Pack Like a Methodology Queen

In the second post of an ongoing monthly series exploring podcasting practice and the medical humanities, Élaina Gauthier-Mamaril reflects on crip methodologies and ethics of counter-archiving disabled knowledge.

Dr Élaina Gauthier-Mamaril’s Research Notes

Year 4, Month 2 of the COVID-19 pandemic

Outside weather: Cloudy with light rain, 7°C

Conditions in the bunker: 20.9°C, 49% humidity, 1159 CO₂ ppm/2% rebreathed air

Archiving and Counter-Archiving Disabled Knowledge

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.

The conversation I had with Hannah months ago that featured on episode 2 of Massively Disabled and in season 3, episode 1 of my other podcast Philosophy Casting Call continues to echo. They were the first person to show me the importance of counter-archiving for disabled people. As a humanities scholar, I was already convinced of the importance and richness of archives as philosophers, historians, and literary scholars rely on them for data, as objects of study. I was raised and educated in an environment that encouraged curiosity and playful extractivism, in other words, I was the child of a 1990s feminist who was told the world was mine for the taking. In many ways, my academic training nurtured and disciplined the part of my spirit that, like so many Disney princesses, yearned for knowledge of worlds unknown, for freedom from gender norms, for “more than this provincial life”. Yet, Hannah’s words stopped me in my tracks.

The archival methodologies of the dominant academic culture are forged in practices that objectify disabled people. The lives of those with atypical expressions of humanity are catalogued, evaluated, and presented by and for those who have power. Those who pen the archives control the narratives that science is built on. When we research the lives of disabled people, often the only documents available are medical records, i.e. extremely private slices of existence that are then splayed out in front of grad students during seminars, as Hannah says in the episode. My educated guess is that the disproportionate size of pathologizing archives has a large role to play in the continued mainstream importance of the medical model of disability. With Massively Disabled, I wanted to contribute to the counter-archiving movement of disabled people. The people with me here in the bunker are not hiding away from the world; they are actively reshaping it. I know that in 50 years records of the trials for long-COVID treatments will be available, but the same cannot be guaranteed for other types of accounts of the lives of long-haulers. My intervention may be partial, but I can do my part to commit to memory and to audio file a partial history of disability communities.

Through the medium of the podcast, I brought together disparate stories from individuals who each have their own relationship to disability, long COVID, and scholarship. In “How to Pack Like a Methodology Queen”, I shared my deeply personal meditation on my role as a philosopher in this space. I knew that my skillset was suited to a historically broad conceptual analysis, but I needed to reflect on how it would relate to the existing (long) COVID narratives. I was constructing an intervention out of the stories that my guests were trusting me to share responsibly, taking the knowledge I received and shaping it into a narrative I could back with my personal and professional integrity. This is why I turned to my brother, Félix, to pick apart what Hannah had called “the ethics of the archive”.

Resisting Extractivism in Scholarship

An important aspect of my philosophical methodology involves what Félix refers to as being “unapologetically anachronistic”. I have made a (fledgling) career out of taking different concepts from across history and intellectual traditions and baking them together to see if they produce something edible and nourishing. My expertise lies in making and discovering complex connections, in playing with perspective in a puckish and irreverent way. As a former mentor and well-respected health services researcher once put it, I get to work with all the messy bits that cannot be accounted for by the methods of psychology, sociology, and biomedicine. Of course, this doesn’t mean I am not bound by ethics, and Félix and I discuss that in the episode. But ethics are also a construction, a code of living well together that is not value-neutral. I have been living and breathing philosophical discourse for over 15 years, have specialised in feminist and relational ethics and it was only recently that I felt called in to think about my extractivist practices, which form, it turns out, the very foundation of my craft.

A photo of handwritten notes in a lined notebook. The writing is too small to read and the second page is partially obscured by a hand resting on the page and grasping a ballpoint pen.
Research Notes. Credit: Lilartsy on Unsplash.

I first read about extractive reading in Max Liboiron’s Pollution is Colonialism (2021), though that is definitely not the first use of the concept. Liboiron cites many authors, including Eve Tuck and Wayne Yang (2012) that argue against ‘reading’ (or viewing or experiencing) literature or cultural practices to extract knowledge that serve one’s purpose irrespective of that knowledge’s relations. For example, Tuck and Yang point out that the indiscriminate use of “decolonization” in the academy as a synonym for social justice erases the primary meaning of the term for colonised people. In settler colonies, decolonisation involves literal repatriation of land; no reforms to policy or law can be decolonial if they don’t explicitly give ownership and sovereignty of stolen land back to indigenous peoples. It matters how and by whom practices and knowledges were experienced and shared. No matter how playful my intent, I am guilty of picking sources, concepts, and theories and applying them to my own ends, just because I can: this is extractivism. I was trained to perform my work this way, as have most academics. It is a highly effective and imperialist approach to making meaning out of the world, one that is rewarded by a system that places tremendous value on individual achievement and ‘original’ thought. We still think, write, and teach in webs of relation, but this is not emphasised. Forged in what Kristie Dotson calls a “culture of justification” (2012), we measure our worth based on how well we win arguments or how much uptake our ideas have. This is the very kind of agonistic practices that philosopher Maria Lugones decried (1987), advocating instead for a playful attitude towards uncertainty and the unknown. Yet, Lugones is not advocating for playfulness to replace responsibility and ethics; on the contrary, to be playful is to practice becoming attentive to nuance and complex relationality, including in the production of knowledge.

I know my work is still steeped in extractivism. All I can do is take that awareness and put it to work daily and imperfectly in my philosophical praxis and my podcasting as I slowly rewrite my researcher story. If I want to practice anti-colonial scholarship, I must learn to cite intentionally and to honour the relations that make my work possible. Perhaps this will mean that my work does not have the broadest appeal, nor can it be universalised as “best practice”, and that is the point. To resist extractivism is also to resist instrumental reason (Horkheimer and Adorno 2020 [1944]), and trouble the logic of efficiency that rules our contemporary scholarly institutions. Here’s to collectively working on redefining methodology.

On Still Being (and Sounding) Tired in Public

This is hard for me to write. I know it’s important to keep research notes, but I’m struggling now, like I was struggling when I recorded this episode. I keep pushing and pulling my bodymind by factoring in multiple rest periods in one workday, but sometimes I must perform access thievery (Smilges, 2023) and hide from the world. The rest of the time, I have no choice but to drag my fatigue across the jagged edges of the writing/thinking process and pray that my brain fog doesn’t develop into a migraine. “How to Pack Like a Methodology Queen” was my most time-intensive episode to produce and I can hear the toll it took in my voice when I listen to it. Others may or may not pick up on it, but I hear pain in my vocal fry and that’s not something I had noticed before. For the longest time, I assumed that my disability was invisible in professional spaces unless I purposefully disclosed it, but here it was, betraying me in the intimacy of my earbud. I seriously considered re-recording the voice over on a “better day”, not only because I felt exposed, but in the name of Good Audio and Professionalism. Ultimately, I left the original audio in, partly because I couldn’t face having to re-do it, but mostly as a political act. As I describe my methodology in the track, I make a point about the importance of including a variety of disabled voices in each episode and of not erasing myself as the author of the text. I wanted Massively Disabled to be a writerly text and I needed to honour that framework. Podcasting is a performance. To address an audience is always a performance. In this case, a reality about my bodymind in that time and place slipped into the performance and I chose to leave it in, not because it is “more authentic” and not because I wanted sympathy. I left it in for me. If I am committed to centring disabled voices and challenging preconceptions around epistemic authority, I need to start at home.

There will come a time when I will want or have to mask my symptoms again. It takes a certain amount of privilege to choose to show up as disabled in a professional setting when, like me, you can so easily “pass” (Samuels 2003). Except it is far from easy. Passing is exhausting and isolating. So, why not take every opportunity to show more parts of myself? During the process of making this podcast I was supported by my line manager and felt safe enough in my workplace to go for it. It may not seem extraordinary to let oneself ‘sound tired’ on the internet, but it was to me. Even more so because I am still tired. Like so many living with long COVID, ME/CFS, and other chronic illnesses, chances are I will be exhausted until the day I die, and I hope to work between now and then, to continue to research and to share knowledge. That means that sometimes I will show up to work as I am.

You can listen to “How to Pack Like a Methodology Queen” 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 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

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

Gauthier-Mamaril, Élaina. n.d. ‘Ethics of Kinship in the Archive w/Hannah Sullivan-Facknitz’. Philosophy Casting Call Season 3. Accessed 3 October 2023. https://podcasters.spotify.com/pod/show/philoccpod/episodes/Ethics-of-Kinship-in-the-Archive-wHannah-Sullivan-Facknitz-e1t2e04/a-a94m2ep.

Horkheimer, Max, and Theodor W. Adorno. 2020. Dialectic of Enlightenment: Philosophical Fragments. Edited by Gunzelin Schmid Noerr. Translated by E. F. N. Jephcott. Stanford: Stanford UP.

Liboiron, Max. 2021. Pollution Is Colonialism. Durham: Duke UP.

Lugones, María. 1987. ‘Playfulness, “World”-Travelling, and Loving Perception’. Hypatia 2 (2): 3–19.

Samuels, Ellen. 2003. ‘MY BODY, MY CLOSET’. GLQ 9 (1–2): 233–55.

Smilges, J. Logan. 2023. Crip Negativity. Minneapolis: University of Minesota Press.

Tuck, Eve, and K. Wayne Yang. 2012. ‘Decolonization Is Not a Metaphor’. Decolonization: Indigeneity, Education & Society 1 (1): 1–40.

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