Introduction
Long before the arrival of Covid-19 and its post-acute sequelae (Long Covid), the sharp rise in debilitating autoimmune disease has been a crisis faced by millions of people, especially women, who live with disabling pain and illness without relief, remedy, or even recognition through proper diagnosis.
The crisis rarely comes into view for many reasons. There are medical research siloes and rapacious insurance companies and state neglect to contend with. There is the fact that those individuals who carry the heaviest illness burdens are often from the poorest and most marginalized communities among us. There are sometimes, as in the case of autoimmunity, problems with the metaphors that guide medical science to conceal more than they reveal.
The story of autoimmunity relies on a standard, hydraulic image of the human body. Under typical conditions, we become sick due to an external pathogen or injury. The body mounts an inflammatory immune response; we recover and then return to our prior state of healthy normalcy that will continue until the next attack.
Autoimmunity is an obscene reaction in which the body never returns to equilibrium and, once it has mounted a protective inflammatory response, begins to attack healthy cells. Inflammation that once signaled eventual recovery now becomes its own disease.
By its definition, then, autoimmunity is a problem of bounded individuals, but it describes a bodymind that is always emergent and in-relation: the body is attacking itself because, in the words of filmmaker Carolyn Lazard, it “no longer distinguishes between self and other.” There is an inherent contradiction here that offers up possibilities for radical reimaginings.
Rather than reifying the body’s self-sameness, we can learn from autoimmunity. This a bodymind that is vulnerable, plastic, with fluid boundaries. A bodymind that helps us see how, as Raj Patel and Rupa Marya describe it “[t]he inflammation in your arteries and the inflammation of the planet are linked.” Autoimmunity teaches us that we are never alone and we are never immune.
But, then, we need models of care that stress connection and ongoingness, rather than return and cure.
*
From our first planning meeting in 2022, the How We Make It Collective knew that we were going to have to build the thing we wanted to study – that is, practices of making that would allow us to survive individually by getting by collaboratively. We embraced crip wisdom about the ways we often have to perform extraordinary, evanescent choreographies to make the world fit our bodyminds, if only for a moment. This is as true of the worlds of academically-employed scholars and artists as any others, perhaps even more so because of our deep “habitus of ableism.”
How we make it: we make it together, in a world of improvisational gerunds, useful objects of beauty, and spaces of comfort and connection.
The crisis rarely comes into view for many reasons. There are medical research siloes and rapacious insurance companies and state neglect to contend with. There is the fact that those individuals who carry the heaviest illness burdens are often from the poorest and most marginalized communities among us. There are sometimes, as in the case of autoimmunity, problems with the metaphors that guide medical science to conceal more than they reveal.
The story of autoimmunity relies on a standard, hydraulic image of the human body. Under typical conditions, we become sick due to an external pathogen or injury. The body mounts an inflammatory immune response; we recover and then return to our prior state of healthy normalcy that will continue until the next attack.
Autoimmunity is an obscene reaction in which the body never returns to equilibrium and, once it has mounted a protective inflammatory response, begins to attack healthy cells. Inflammation that once signaled eventual recovery now becomes its own disease.
By its definition, then, autoimmunity is a problem of bounded individuals, but it describes a bodymind that is always emergent and in-relation: the body is attacking itself because, in the words of filmmaker Carolyn Lazard, it “no longer distinguishes between self and other.” There is an inherent contradiction here that offers up possibilities for radical reimaginings.
Rather than reifying the body’s self-sameness, we can learn from autoimmunity. This a bodymind that is vulnerable, plastic, with fluid boundaries. A bodymind that helps us see how, as Raj Patel and Rupa Marya describe it “[t]he inflammation in your arteries and the inflammation of the planet are linked.” Autoimmunity teaches us that we are never alone and we are never immune.
But, then, we need models of care that stress connection and ongoingness, rather than return and cure.
*
From our first planning meeting in 2022, the How We Make It Collective knew that we were going to have to build the thing we wanted to study – that is, practices of making that would allow us to survive individually by getting by collaboratively. We embraced crip wisdom about the ways we often have to perform extraordinary, evanescent choreographies to make the world fit our bodyminds, if only for a moment. This is as true of the worlds of academically-employed scholars and artists as any others, perhaps even more so because of our deep “habitus of ableism.”
How we make it: we make it together, in a world of improvisational gerunds, useful objects of beauty, and spaces of comfort and connection.
LINGERING
Listening
Archiving
ALIGNING
Witnessing
Pacing
CRAFTING
Folding
Brewing
[1] Carolyn Lazard. 2013. How to Be a person in the Age of Autoimmunity. Cluster Magazine and available here: https://static1.squarespace.com/static/55c40d69e4b0a45eb985d566/t/58cebc9dc534a59fbdbf98c2/1489943709737/HowtobeaPersonintheAgeofAutoimmunity+%281%29.pdf. last accessed 29 June 2023.
[2] Raj Patel and Rupa Marya. 2022. Inflamed: Deep Medicine and the Anatomy of Injustice. New York: Picador.
[3] Arseli Dokumaci. 2023. Activist Affordances: How Disabled People Improvise More Habitable Worlds. Durham and London: Duke University Press.
[2] Raj Patel and Rupa Marya. 2022. Inflamed: Deep Medicine and the Anatomy of Injustice. New York: Picador.
[3] Arseli Dokumaci. 2023. Activist Affordances: How Disabled People Improvise More Habitable Worlds. Durham and London: Duke University Press.