Episode 2: How to pack like a methodology queen
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A philosopher, a historian, and Tucker Carlson walk into a bar… Welcome to Episode 2 of Massively Disabled, the one where Élaina lays out her methodology and rolls it up in a rucksack, ready for the road. We’re talking narrative medicine, citational practices, and the philosophical uses of history (whatever that is) to better understand how we are going to approach the topic of long COVID.
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Hannah Sullivan-Facknitz 0:00
I have to be an activist in order to get access to anything. And I just kind of wanted a job that wasn't that, right? And that was the goal. But I came in and I had to do so much labour just to get basic access and to have a basic understanding of where I was coming from to value the many things that I was bringing in that so much square one work. Yeah. Oh! and you become a thought experiment to you know, like your life becomes a thought experiment that people put in front of graduate seminars to discuss and I'm just sitting here like, holy crap.
Élaina Gauthier-Mamaril 0:42
Oof, hi! Let me just catch my breath. I definitely need to lie down. Yeah, ok. That’s better. Come closer. Welcome back to Massively Disabled, a long COVID research podcast! I’m Élaina Gauthier-Mamaril, a disabled philosopher of disability, and I’ll be your guide. We met last episode, remember? If you haven’t changed your mind about travelling with me, you’re going to have to help me gather the necessary materials, because my fatigue fever is bad right now. I’m going to need all of my methodological tools at hand throughout this journey. They are what will help me observe, analyse, and interpret the data on long COVID and mass disablement. You don’t want to use a bulldozer to prune a rose bush, and so on. When Link fights monsters, he chooses his weapon accordingly. As a philosopher, my method involves framing theories, that is, different strategies of approaching a text, an object, or a situation. So, what do we have here? Bring it closer. Before we begin the inventory, I should probably mention that it can get a bit heavy. We’re going to be talking about eugenics, past and present, so please take care of yourself, even if that means pausing the podcast for a bit. Ok, so I have sorted the necessary items into three categories: Purpose, Skills, and Strategy.
So, what is my purpose? You’ll find the flashlights and walking sticks in the Purpose section. Fun fact: you can use two walking sticks and a tarp to make a stretcher for those of us who can’t walk! Always plan to leave no one behind. First and foremost, the purpose of this research podcast is to practice accountability to disabled people. What I mean is, I explicitly recognise that the knowledge I produce and choose to share with you as we travel together benefits from long traditions of disabled knowledge that I have only just begun to engage with. It also means that striving to understand long COVID as an example of mass disablement is not just a theoretical project; I hope it will contribute in some small way to the creation of a more just world for disabled people. The voice you heard at the top of the episode belongs to Hannah Sullivan-Facknitz, a disabled activist and historian who, among other things, is living with long COVID. Hannah reminds us that disabled people are usually studied as objects, our lives presented as thought experiments to be debated. Our lives should not be up for debate. Whether the appetite to fund long COVID research continues or not (and my educated guess makes me very sceptical; more on that in the following episodes), masses of disabled people right now deserve to be acknowledged and cared for. In my role as a philosopher of disability, I am creating this podcast to contribute to the archive of disabled lives, to the oral transmission of disabled knowledges. As a philosopher, I am trained to want to understand, to read, analyse, and to make conceptual connections. But I want to put these skills and this drive to the service of my disabled kin, not to exploit them. Only time will tell how well I will fare. I’m not perfect and I’ll definitely stumble along the way, but I tell myself that walking uninterrupted is overrated anyway. Amplifying disabled voices is essential because we are living with the legacy of eugenics. You may think that eugenics only applies to practices like forced sterilization or genocide (practices that are still very much alive, by the way), but the truth is that it encompasses barriers to all sorts of disabled reproduction. Disability studies scholar Rosemarie Garland-Thomson coined the term “eugenic world building” to describe processes that aim to “eliminate disability and, along with it, people with disabilities from human communities and future worlds through varying social and material practices that range from seemingly benign to egregiously unethical” . I argue that our current social practices of removing all virus mitigation protocols and destroying access to public spaces created during the first phase of the pandemic are part of eugenic world building.
At the time of recording, the Scottish Healthcare Workers Coalition is calling for the return of mask mandates in healthcare facilities. This is not only to protect patients, some of which are immunocompromised, but also fellow workers. It is estimated that about 4% of current healthcare workers are living with long COVID symptoms and the House of Lords has acknowledged long COVID as an “occupational disease”. This example tells me two things: not only is there a cavalier attitude towards more people becoming disabled, but, as things are, there is a systemic disregard for the safety and wellbeing of currently disabled people.
Another example of eugenic world building would be workplaces insisting on cutting back on or eliminating remote and flexible working conditions, that is, removing access to the workplace for many disabled people. According to the Department of Work and Pensions, after housing costs, 27% of disabled people in the UK live in relative low-income households and and 21% live in absolute low-income households. The disability employment gap is currently 29%. And these statistics don’t take into account people who have changed from full-time to part-time employment because of disability, including because of long COVID. I share these statistics not because I want to glorify work, especially since a person’s ability to return to the labour force is the metric used to value human beings in our neo-liberal societies. But these numbers speak in their silences. If disabled people are not employed, they are either living on state benefits, and therefore under the poverty threshold, or they cannot even qualify for those benefits and depend entirely on kin or community support. This societal dynamic is not new; its structures are based on decades of policy. Pragmatically, the UK’s health and social care systems are not equipped to support existing disabled people adequately, let alone the effects of recent mass disablement. Which is why I’m starting by turning to history to help me understand how we got here.
So this is my skills section, you'll find here... Yes, right, that. Thank you. So, we’ve established why I’m doing this. I want to account for this present moment, informed by past mass disabling events like encephalitis lethargica, poliomyelitis, HIV/AIDS, and ME/CFS. Your next question probably is: What does this mean since you are not a historian? Good question. I have not been trained in a history department. The last time I took a history class in a school setting, I was practicing for my driver’s license. But I have been extensively trained in what Anglo-American philosophers call the “history of philosophy”, which basically means that I explore philosophical ideas within their social, cultural, political, and historical context. I do not specialise in abstract logic problems, for example. Instead, I study how ideas like “individuality”, “otherness”, and “disability” are used, presented, and shared in specific communities throughout time. Then, as philosopher Sara Ahmed puts it, I consider what these ideas do, what their effects are in the world, that is, the way they shape lives. For this project on mass disablement, I am focusing on texts and discourses that are part of UK history in dialogue with crip and feminist theories as well as the testimony of disabled people. “Discourse” is one of those obnoxious-sounding words that I find very useful. It has the quality of flowing water, hosting within it rich biodiversity, picking up leaves and branches as it flows, all the while polishing the stones in its bed. To me, engaging in discourse is a dynamic act that recognises that I am in relation with a complex tradition and choose to keep moving through it, even when I resist parts of it. This is how I approach history as a philosopher. To help me think about this important topic, I asked the number one scholar on the philosophical uses of history I know.
Félix Gauthier-Mamaril 11:01
Hi, my name is Félix Gauthier-Mamaril, I am a PhD student at the University of Ottawa. My thesis is on the transition between memory in history and the questions of truth and knowledge in history to political and ethical action. And I'm also the host's brother, in case the widely common Gauthier-Mamaril family name wasn't sufficient to establish that fact.
Élaina Gauthier-Mamaril 11:38
What does a philosophical use of history mean to you?
Félix Gauthier-Mamaril 11:43
I think to some degree, there is a certain relationship to the past and therefore history within philosophical work itself. But it is different than that of a historian or or sociologists in that it is unashamedly anachronistic. Alright, what I mean by that is that when we are looking to philosophical texts, philosophical authors, or just even ideas that have been passed down in the course of human history, we tend to disregard certain, shall we say, markers and methods that a historian would absolutely not dismiss. The basic intuition behind my own work and my own delving into the philosophical uses of history, and more, more broadly the past, is rooted in that almost viciously, unapologetic bringing together of elements that a historian would keep separate, right. So you don't talk about, for example, the ancient Roman Empire, and the Victorian British Empire in the same way without doing a whole lot of work to make comparisons because they're two different contexts, with different perspectives and different... and different elements at play. But, but a philosopher can, for example, like Foucault, go through the history of certain notions and certain ideas, and sort of pick out themes in order to build what we call genetically the birth of a certain idea that is now widespread, and explains how we think about things. Right? So in philosophy, whether we like it or not, we base our positions around the idea of tradition, right? So we, you and I, are rooted in the Western European tradition of philosophy that some might call Continental, and the more you deep down, the more fractally you can get. You can be more specific. However we feel about this situation in tradition, it doesn't change the fact that we are we have to respond to that it has shaped how we think how we posed problems, how we find solutions to those problems. And even though through more study, more encounters with different perspectives and different ways of doing philosophy, we can broaden the horizon and perhaps create new traditions, there is no changing the past so to speak, in that sense. So the way in which we relate to the traditions which gave rise to how we think the more we can be, we can consciously make decisions on where whether or not we want to perpetuate that tradition, or go into a different direction.
Élaina Gauthier-Mamaril 14:56
Let's take a break to regulate our breathing. I'll be right back.
Do you have long COVID? Are you researching long? COVID? Are you a researcher researching long COVID having long COVID? Do you have any questions about the podcast? You can contact me at massively disabled@gmail.com?
Do you think there are ethical risks in doing this kind of anachronistic comparative work? For example, I work on eugenics and the no. 1 example that comes up is the Jewish Shoah or Holocaust enacted by the German Nazi party in the 20th century. I get that appealing to this well-known genocide is an effective way to make a point about the seriousness of current eugenic policies and practices, but isn’t it also kind of irresponsible? When does philosophical use of history become abuse?
Félix Gauthier-Mamaril 16:02
In the way I envision it, the philosophical use of history is on a level of abstraction that is divorced from, let's say, a gross equivalency, for example, between what happened in the Holocaust and another situation, which is wholly inappropriate, right? Because the idea behind this reaction to not comparing a particular historical event to another is mainly because in the community, which holds this event, as... I don't want to say sacred, but the holds that as important, as valuable, as a singular event, that singularity is what is most important, and therefore any sort of attempt to comparison would be demeaning to the value this community holds to the event. And, obviously, we have to be aware of this. And especially when we use such events in a rhetorical fashion, right, where we, for example, cite the Holocaust, or in Canada, you know, citing what happened to the residential schools, or even labelling certain right wing fringes, in politics as blanket Nazis or fascists can have this sort of effect, where you lose the specificity of what those historical events and historical movements and groups had. And you need to be aware of what lines you are crossing when making such a comparison. But on the other hand, comparison is necessary, almost paradoxically to highlight the specificity of events. And also put it in connection with other human experiences, because that's how usually, we learn about things. One person tells another about their experience. And then that person, even though they can't have that same experience can have a similar experience, and a connection is made between the two. In that particular sense, the anachronistic praxis of the philosophical use of history has to be done, like all practices, has to be done ethically, right. And that can be done in accordance not only with how history has developed their own method, with dealing with these things, but also when it comes to events that have been entered into the institution of history, and are being held dear by communities that aren't necessarily historians themselves, or, at least, institutionally so, how to best deal with that.
Élaina Gauthier-Mamaril 18:44
One of my concerns is about the narrative I am creating around long COVID and long COVID studies. I am comfortable owning the fact that I have to make certain choices about what to focus on in my research and what to include in this podcast. But I’m also aware that I’m not speaking into a void: there is plenty of discourse around COVID in general and so much of it is based on disinformation. Whatever my intention is, releasing a narrative podcast on the topic of a public health crisis feels vulnerable because the very concept of “narrative” is treated with suspicion, and with good reason. Still, I’m not ready to give up the possibilities that historical comparison opens.
Félix Gauthier-Mamaril 19:34
Getting rid of the false dichotomy between establishing facts quote unquote, and and interpreting them and realising that this work, this whole work, from selecting documents to the archive, establishing facts and writing them is also interpretation, but it is interpretation with the intention and the implicit promise of speaking the truth, which is then the the ethical standard we can hold that text towards, right? So it can't be like Tucker Carlson, who basically in order to avoid lawsuits would say, Well, I, I'm playing a character that is obviously being very factually wrong about things. So you can't sue me for saying factually wrong things. I'm not gonna go into the actual legality of that defence, but it is, for a historian, ethically inacceptable, to say something like, right? And so in order to distinguish between a text which proposes to be a truthful telling of the past, and a text that does not, I think, it goes back to the idea that abuse does not preclude correct use: just because someone can use history and manipulate the way in which we talk about the past. Because that's what narrative is, ultimately, it's just a way in which we talk about the past to someone else, right. And that is further expanded by the medium of text and writing, which makes it so that the ones who receive what we say about the past are not necessarily the ones we intend, right. It's a very common truism among writers that you can't imagine a perfect reader because there is no such thing as a perfect reader, right? Because the written word assumes that whoever can read, will read, can read your text, which means that a historian cannot do their work, presuming that only other historians will read it, which means that they can't expect that there will only be the use that they intend for their work.
Élaina Gauthier-Mamaril 21:45
This is all very well, but what do historians have to say about this? Through researching for this podcast, I came across Kate McAllister’s work. Kate holds a PhD in History from the University of Sheffield and wrote her thesis on “Encephalitis Lethargica, viral illness and the binary structures of the modern British health system c.1900-1975”. In other words, she is an expert on the pivotal time when the UK healthcare system was transitioning from 19th century Poor Law institutions, including workhouses, to the precursor of the modern NHS. So, I think it’s fair to say she is just the historian I needed to talk to. I was keen to learn more about the methodological differences between history and philosophy, but it turns out that the lines are blurrier than I thought. For example, just as I find it tricky to square away my work within the confines of the current, mainstream discipline of philosophy, Kate also expressed an ambivalence about being a certain kind of historian:
Kate McAllister 22:58
I mean, it's a huge question, right, as well, isn't it? Like, what is history? What is, what is a historian? And I'm really talking on a very personal level here, but I guess the first thing I would say is that, I think for me, it's come from kind of the sources that I use. So I again, I'm not a philosopher, either. But I've always been very interested in philosophy. And you know, I've always used very kind of philosophical texts to kind of build some of my own arguments. So I remember I was when I was doing my MA, one of my tutors introduced me to Annemarie Mol and her work on "The Body Multiple". And I remember reading that and just thinking, this is the best thing, this is like, this is an incredible piece of work. It's like, it's fascinating, I would love to do something like this in from a historical perspective, you know, and again, you know, when I came to my PhD, I, I, you know, brought Mol's work with me, but I also started reading people like Ian Hacking, and Hacking's work particularly on to kind of transient mental illness, and the way in which categories kind of come into being and are held together, through lots of different kinds of buy in through lots of different things. And that was always something that I was fascinated by. I guess, part of that discomfort of being a historian was for me about where I was getting a lot of my knowledge from and my tools, which they're not historical tools really, like Hacking would not have described himself as a historian. So yeah, for me, it kind of came from that. Secondly, it's also about the kinds of questions that I'm asking. I've never thought of myself as, you know, a researcher that wants to tell, that wants to write a history of something, it was always, you know, using history as a, as a tool to answer a much bigger broader question. So, you know, ultimately, I think the thesis hopefully was able to kind of answer questions about aetiology and you know, symptom otology and what is it? What is the disease category? Why do we Why do we have disease categories? What's a concept? You know what, what these kind of very big questions, which I guess I'm not the first person or the first historian to ask those questions.
Élaina Gauthier-Mamaril 25:15
o, it turns out I may have more in common with historians (or at least, some historians) than I thought. I was basically jumping in my seat with glee when Kate said “What are disease categories? Why do we need disease categories?” These are exactly the kind of questions that drive me. What does mass disablement mean? How can becoming massively disabled as a society force us to rethink what concepts like “knowledge”, “agency”, and “justice” mean to us? Oh, I’m so excited!
Now that I’ve told you a bit more why I’m taking up this research podcasting journey, I should clarify how I’m going to go about it. You’ve probably noticed that I’m weaving in some personal anecdotes with quotes, interviews, and statistics. I really want this to be a work inspired by narrative medicine, a practice that physician-scholar Rita Charon defines as employing the “narrative skills of recognizing, absorbing, interpreting, and being moved by the stories of illness” (Narrative Medicine 2006). While narrative medicine is primarily aimed at medical professionals, I will be flipping the perspective and advancing from the point of vue of critical disability theory. Following the lead of narrative medicine scholar Danielle Spencer in her book Metagnosis, I want to build my methodology around the three pillars of interdisciplinarity, narrative attentiveness, and a writerly text. (Metagnosis p. 15) Interdisciplinarity means a complex approach using multiple tactics and theoretical traditions. Just a few minutes ago I was telling you about working on historical issues as a philosopher. That’s an example of blurring disciplinary boundaries. I also read sociology of medicine articles, books on critical disability studies, activist blogs, government reports, and biomedical studies when I research these episodes. I am not using any one of those disciplines’ methods; I am letting them inform how I become attentive to the narratives of mass disablement. Narrative attentiveness is Spencer’s second pillar of narrative medicine as methodology. You can practice it with me. What is the tone of my interviewees in this episode? How about in the last episode? How does the tone depend on the subject matter? Let’s take it one step further. What tone do you think I’m trying to accomplish here? How do the musical cues in this track contribute or jar with that tone? Most of us have heard the saying “it’s not what you say, but how you say it”. Whenever we communicate, we are always packaging information, and presentation very much informs if and how that information is received and acknowledged. It also means being open and upfront about which narratives we are paying attention to. You could say that my focus on disabled knowledges is a biassed way of approaching the topic of mass disablement. You are right. I have made a choice to let disabled people lead the discussion when it comes to defining disability. I’ll link Mich Ciurria’s excellent blogpost on that in the show notes. Finally, the pillar of the writerly text. This is probably the hardest to explain. But, in a way, we’ve been exploring it all along. As I understand it, a readerly text presents itself for the reader’s enjoyment. You, the reader (or in this case listener) might be entertained or even edutained by a documentary podcast on long COVID. Or even by a fiction podcast on long COVID! But you’ve noticed that I’m speaking in the first person and talking about what feminist theorists would call my intersectional ‘positionality’ as a philosopher, a disabled person, a cis queer woman, and as a podcaster. I would add to that that I am a second generation Filipina mestiza who grew up and was educated in the Global North as an uninvited settler. As your narrative guide through this investigation into mass disablement, I bring all of this to the table. Yet, this is also not my memoir. It’s an in-between text. A writerly text. It includes, but does not centre, the writer. In a way, this is narrative non-fiction. It’s important for me to not erase my presence as a researcher in this project, but this is not my personal diary. It’s a research diary, a snapshot of a project that will have evolved even in between when this is recorded and when this episode drops (production spoilers!). I am documenting my process of discovery and exploring my own narrative capabilities as I go. Part of these capabilities include an intentional citational practice. For example, every episode will include the voice of at least one disabled person (other than myself). I do this both for myself and for you, my listener, to encourage us to blur the lines between theory and lived experience, to displace our assumptions about expertise and “serious” knowledge. Perhaps most importantly, I want to challenge the notion that you either be in the caring or the cared-for role, or in either the knowledgeable or the vulnerable category. Just like everybody else, disabled people live at multiple intersections of agency and identity. I hope this project can keep that front and centre. I also chose to include a bibliography with each episode. I want to be open about the sources I consult and the scholars, journalists, podcasters, and disability activists that shape my thought process. The people I feature and cite in each episode are only a fraction of those whose work I read and pondered over in my research. I have to make choices and can’t mention them all on air, but sharing them in text is a necessary part of this project. I am bringing the practice of the writerly text into an audio form and broadcasting it widely until it reaches you, my fellow apocalypse dweller. Whether you are using your ears, your eyes, or your fingers to hear me, I am bringing you along with me. Whether you discover this episode the minute it drops or in 10 years, it is still a live document, an invitation to reflect on long COVID in its historical context. It’s up to all of us to decide on what world we want to build, but we need all the help we can get to see, interpret, and understand the parallels and comparisons between the past, present, and futures. Embrace the possibilities with me! Kate says it best:
Kate McAllister 32:15
We need history, or the medical humanities more broadly, to be able to understand the differences but also the links and the parallels between those two those things.
Élaina Gauthier-Mamaril 32:29
Look at that: we’ve finished packing. We have our purpose, skills, and strategy to help us face what lies ahead. We’re going to rest now, but next time we’ll be travelling to meet polio survivors and hopefully learn how we can crip “burden of health” narratives. So, stay safe, wear a mask, and I’ll see you soon!
Massively Disabled is hosted written and produced by me, Élaina Gauthier-Mamaril. Music is by Morgan Kluck-Keil. You can follow the podcast on Twitter and Instagram @massdisabledpod and write to us at massively disabled@gmail.com This podcast is made possible with the support of the Centre for Biomedicine, Self and Society, Usher Institute, at the University of Edinburgh.
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