How (Will) We Make It

Megan Moodie

A collaboration is all about how one thing leads to another.

I could narrate a few through-lines for the How We Make It collective.

One would start in late 2020 and early 2021 when those of us who have had disabling chronic pain and illness for a long time started noticing a rapid swelling of our numbers in social media spaces. Especially in the cyber world connected to ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), where there were so many symptomatic overlaps with people suffering from what was coming to be called Long Covid, and the search for answers had become frantic, some of our Facebook groups seemed to double overnight, to grow exponentially. I was dealing with medical shit of my own, but twenty years as a cultural anthropologist had trained me to look exactly for moments like these: something big was happening, even sheltering-in-place, even when there’s hardly a place or a community as such to study, yet. I couldn’t live in it and not see it through an ethnographic lens; but it was so big, massive, it was a pandemic, FFS, the ethnographic was only one view among many. Who else might be interested?

Another story would tell you about being a mother working from home while her son attended fifth grade online, in his messy bedroom, and the feeling I had that the walls were closing in. “You’ve lived through worse, honestly,” my partner said. He was thinking of the last twelve years of our life, spent in surgeries and therapies and, finally, varying levels of acceptance of the growing number of ways in which my peculiar bodymind is disenabled in the social worlds we inhabit. “Why is this the moment you’re becoming unglued?” I couldn’t explain it, but I knew I wasn’t alone. The New York Times was running a whole series called “The Primal Scream” on mothers at the breaking point; every Zoom meeting I have with another mother confirms it, we’re Virginia Woolf’s worst nightmare without a square inch of our own. My fantasy life grows – another thing lots of American mothers report, if we’re being honest – and I start imagining a place I could go where I would find some solitude, but also community; where I would not have to give up my relationships of care, which I had no interest in doing, but could somehow be welcome. A place for caretakers, sick bodies, people who can’t travel long distances, at least not often, or take six months away. Where and how could we reside?

Here’s another story about our group: About a year into the pandemic, disability activists and scholars started to talk about how earlier pandemics had changed the world. In a roundtable discussion on “Pandemics and Their Consequences” at the Canadian Anthropological Society Annual Meetings, my colleague Pamela Block explained how mid-twentieth-century polio survivors became the architects of the famous 504 sit-in in 1977 and the passage of the Americans with Disabilities Act in 1990. The film “Crip Camp: A Disability Revolution,” released during the summer of 2020, reinforced the idea that sometimes people and movements align in important ways, if only temporarily, so while for contemporary audiences it might be surprising to learn that the Black Panther Party in Oakland, California, provided hot meals to disabled 504 protestors, in the context of the Bay Area at the time, the connections were being made obvious, explicit. (Disability politics would whiten in the coming decades). The time of the Covid-19 pandemic is/was also the time of the murder of George Floyd; a surge of support for the Movement for Black Lives was accompanied by the legitimation of aggressive white nationalism, often in the form of violent Anti-Asian hate. “Abolition” and “disability justice” become topics that are/were utterable, tweet-able, new questions are/were on the table. I listened to a panel discussion in which adrienne maree brown asked the audience “How would you like to be held on the worst day of your life?” and it stirred me to my core with its simplicity and incisiveness, enervated new pathways for feelingthought. How will we make the world differently, now?

I applied to lead a cluster of Residential Research Fellows at the University of California Humanities Research Institute (UCHRI) at UC Irvine at the literal last minute: I found the call for proposals the day before it was due. I had no committed collaborators and only a vague idea about how a research cluster might work. But it was easy to convey that our sense of the urgency of the issues at stake had to be coupled with a view of Covid-19 as a longue duree – for the bodyminds for whom the virus is an ongoing, shifting experience of debility and for a socio-political landscape that has endured previous pandemics, whether they were recognized as such or not (ongoing HIV/AIDS activism seems critical here; see What Would an HIV Doula Do?). The proposal was funded and we put out a call for participants.

We were some of us friends and some of us strangers; some of our links were of long duration and others popped up, surprise moments of mutual recognition, connection. Some of us lived in Irvine full time, others made fairly regular trips. Some members participated entirely virtually. Seven of our ten members converged in Claremont for the closing of Pato Hebert’s gallery show “Lingering” and a panel discussion that included another of our members, Alexandra Juhasz. We worked on individual research projects and we read books and articles together. We also spawned new projects and collaborations and we did it all with a deep sense that we were not only studying a thing in the world or making art in its wake, but that we were also making the thing that we needed: a community of artists and scholars that begins with the acknowledgement of our “brilliant imperfection” (Clare 2017) and deep interconnectedness. A group that knew from the beginning we could not fulfill all the conventional expectations for academic productivity, but we would perhaps see unusual connections/patterns/questions precisely because many of our bodyminds and care obligations were asking us to slow down, to sometimes sit out, and, conversely, sometimes to step in and step up for one another.

We lived through bouts of Covid, the ongoingness of Long Hauling, Covid scares, Covid tests, not being able to find Covid tests, crises with our children, crises with our partners, crises with our pets, acute mold reactions, acute dystonic storms, Anti-Asian violence, random health crashes, a research center burning to the ground and taking one member’s fieldnotes with it, confusion with funding models, cars that needed to be charged, phones needed to be charged, local fires, a trip to Urgent Care for chest pains, responsibilities for elders, being unable to give elders the care and attention they required, and having project interlocutors pass away.

A collaboration is all about how one thing leads to another.

There is no easy way to depict what the How We Make It collective made when we were together, because so many things led to so many anothers, but this digital installation is our best attempt.  

We offer you an archive of the words, objects, images, sounds, places, and spaces that emerged from our collaboration, the artifacts of our time together, which stretches into the past and the future. Our installation is a work of art, but it is also a form of evidence, a gathering of answers, which also loop and gather themselves, to think about disability justice for the Long Haul. Our evidence stretches many definitions of what counts as evidence at all, including those of medicine, social science, and history; in our insistence on the ways in which making it often relies on crafting – the kinds of art we can make with what’s to hand, with the spoons we have available – we even push the boundaries of aesthetic evidence. 

We offer you a glimpse of a model for making (it) together in ongoingness. 

A way to make it that accepts that our bodyminds are vulnerable and connected.