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HOW WE MAKE IT: Disability Justice, Autoimmunity, Community

How We Make It Watercolor

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Navigation How We Make It: Disability Justice in the Wake of COVID’s Long Haul (hereafter, HWMIC) is a ten-person collective of sick and disabled artists, academics, and their allies in various stages of career and capacity: we are newly minted PhDs and distinguished professors; we are exhausted with chronic fatigue, disabled from mold, capitalism, mast cell activation, viral reservoirs, and also not-yet-disabled or passing for well. Each of us brought individual projects to a hybrid (in-person and online) convening of our research collective, initially as a one-quarter residency in spring 2022 at the Humanities Research Institute located at the University of California, Irvine. Our project leader, (h)Ehler-Danlos spokesperson and activist Megan Moodie (UC Santa Cruz), has continued in 2023 to make online space for our group to reflect on the embodied mentorships and life transformations enabled by this residency.

This Scalar assemblage acts as a partial archive of our collective's choreographies, conversations, documentary images, and DIY manuals, as we waxed and waned in varying degrees of muscular shaking and tic-ing (dystonia), of invisible but felt chronic inflammation and brain fog—a hallmark of post-acute sequelae of COVID (PASC)—and other both progressive and intermittent symptoms of chronic illnesses. While some of us remain in proximity to autoimmune disorders such as Graves disease, we are less interested in demonstrating the congruency of our conditions to autoimmune disorders as established by US medicine, as we are in conceiving embodiment as never “auto” nor “immune” but a co-inhabitant ecology—indebted to the variegated biological and social communities in which we dwell and that dwell within us.

If more of us had been excellent digital artists with more spoons on hand, our table of contents would be a circle of several matryoshka dolls, each nesting twin and triplet creative acts from our siblings in this collective. At the center of this circle would be the mother matryoshka—a textual reflection by Megan Moodie, this group's convener, on autoimmunities in relation to How We Make It.

A circular or spiral organization feels apt to how our group functioned.However, we realize that some readers may want a clearer pathway through the images, videos, sound files, and reflective writing that our ten members have composed as recipes for and queries into "how (will) we make it" after long hauling with chronic illnesses, disabilities, autoimmunities, and grave losses, some related and others not to COVID-19. In the toolbar in the upper left, adjacent to the compass icon, is a table of contents with three headings: Lingering, Aligning, and Crafting.

LINGERING refers to Pato Hebert's solo exhibit at Pitzer College, the occasion for all but three members of the HWMIC to linger with each other on a beautiful April evening and to contemplate how art practices and relations of care have to be rethought as COVID lingers for long-haulers. To linger is to listen with gratitude for another's pauses, stutters, slower pacing, newer rhythms and to archive how structures of inattention and abandonment have been visited on those who cannot or do not return to the land of the well.

ALIGNING takes inspiration from dance and sound studies, the allowing of fractious energies to vibrate through one’s embedded body rather than attempting to overcome or go against and thereby amplifying the velocity of clash and crash. The emphases in this cluster are on noticing “magical collaborations” between electric weather patterns and neuroscience; and learning across linguistic and cultural differences about the tensions negotiated by those caretaking and needing care.

CRAFTING taps into the amateurism, creative joy, and rejuvenating play we allowed ourselves as we adjusted to the ways our art and scholarship could not keep up with the rate of losses we were documenting and experiencing in each other’s company. Though compromised in the capacity to analyze, stay on point(e), or carry on as if COVID were over, we could and did give ourselves permission to yarn, color, collaborate, and fold (over) with laughter and camaraderie.

The form that we have given to this assemblage is designed both to honor the heterogenous mediums and languages of each contribution and simultaneously map the synergies that emerged and the spirit of care and deep listening that helped sustain our bodyminds (Schalk) and cravings for nurturance in isolating times.

Previous page/ Opening image credit:
Pato Hebert
Spoonies, from the Counter Measures series
Salvaged eucalyptus
2021
Dimensions variable