Reimagining the Body Productive

1. Kingfield, Minneapolis It is mid-afternoon on an unseasonably warm November weekday. From my bed, where I write this, I can hear the gentle lapping of the freeway across the street and the sounds of construction a couple blocks away. By write this, I mean I speak my words aloud into the talk-to-text function on Google Docs, eyes closed, head on pillow, joint pain and today’s migraine blazing through my skeleton. When I was 20, a college professor told our class that “real poets” showed up to their desks every day as if reporting for a 9-to-5 job. “Real poets” sat upright in a chair at about the same time of day, for at least an hour, to show their dedication to their work. College students who wrote haphazardly among pillows and empty bags of chips, allowing ourselves to be interrupted by phone calls and naps and impromptu makeout sessions on piles of homework, weren’t doing justice to the writing life. I believe he wanted us to commit ourselves to diligent practice of his and our beloved craft, with which I take no issue; rather, I now struggle with such a narrow illustration of how that commitment might manifest itself. A decade and a half later, I know that there are as many ways to be a hardworking, generative, committed poet and artist as there are poets and artists.  It took me years to shake off that professor’s words, which I took at the time as wisdom. When our circumstances and our own selves allow for it, I believe our body-minds will establish their own personal definitions of “productivity” and “work.” These days, my particular disabled body is more comfortable writing from a bed or couch than a desk chair. I love writing by hand, but now I’ll write just the skeleton of a piece in my notebook, then type or audio record the rest. A few minutes of writing in any form is a big accomplishment, and a few hours at a stretch is a full day’s work of which I am proud, but which I try not to make the measure of my productivity. I also work in a range of other visual and performative media, because writing—though it will always be a deep, true love of mine—is usually the slowest, most difficult, fraught, and painful form available to me, and I am far from anyone’s definition of prolific when it comes to words. To conserve my physical energy, I work over my writing projects in my mind for weeks, months, even years, before writing much down—which means that I am often unable to “prove” my labor by showing early drafts and notes, and that my first paper drafts are actually third, fourth, or fifth iterations. 

I am grateful to be writing this essay as part of Virtual Mn Artists Presents: Alison Bergblom Johnson, a multi-faceted arts event created by, with, and for disabled artists. In the last five years, most of my performances and public presentations happen in community with other disabled and/or queer and trans artists, and sometimes I forget how life-giving our communities can be until I am within that kind of space again. Here, with Alison’s vision, performances by Scott Artley, Rubin Hardin, and Peder Hagen, and films by Atlas O. Phoenix and Liza Sylvestre, we present our own distinct perspectives and artistic voices within the power of the collective. Some of my favorite details from the films and performances echo each other, while still being valuably personal: our disabled self may be “a cliff who has been hit by waves far too many times. [We] refuse to defend [our] soot. [We] refuse to explain that [our] caves have value” (Rubin); our hands, with nails painted blue, shake as we sprinkle pixie stick dust onto red fabric, while our mother describes her anxiety about our low blood sugar over the speakers (Scott); white text against a black background scrolls below clips of old cartoons with what we imagine might be happening between two characters, commenting on the difficulty/impossibility of reading animated lips (Liza). While I feel inextricably connected to the spectacular cosmos of disabled artists living now, in the past, and in the future, I can only truly speak from my own lived experience as a white, queer & trans poet and multidisciplinary artist with Ehlers-Danlos Syndrome (EDS) and major depressive disorder. I have the support of a two-year-long Jerome Hill Artist Fellowship, which allows me to set my own schedule and scrape by without a day job. I have a degenerative connective tissue disorder that causes chronic pain, fatigue, and a host of other issues, as well as fluctuating mental health needs that make it difficult to maintain regular schedules and meet the requirements of my work as a self-employed, full-time artist. However, I also have low-cost health insurance from the state, a support network of friends and family, and rental housing that has been secure for several consecutive years. I was born a citizen of this country with white skin. I have no dependents. I have had access to education and have not, as of the moment of this writing, been institutionalized for my physical or mental illness. I do not represent or presume to understand the lives of every disabled and ill person on this planet, but I do want to make space for us in the collective imagination. Unlike many other identity categories, anyone might become one of us at any time in their lives, whether temporarily or permanently, whether or not they ever come to self-identify as ill or disabled. We are here, we are infinite, and we deserve to live and thrive. 

For artists and writers with disabilities, access to arts spaces doesn’t just mean practical accommodations or tangible resources, though those are vital. It also means access to imagining ourselves as artists. We need access to experiences where we are reflected, acknowledged, valued, prioritized, and normalized. What does this look like in practice? It means we are onstage, behind the scenes, in the crowd, and running the show. It means the tangible and intangible forms of support that make our participation possible and sustainable. We need to get paid (but some of us can’t get paid too much or all at once, lest it compromise the federal disability benefits that we depend on.) Feed us, communicate with us in modes we can actually access, tell us the accessible and inaccessible attributes of a space before we even have to ask, know and share your own access needs with us so we don’t feel so alienated, listen, remember that we are not a monolith and that access needs are personal, individual, variable, and can’t be assumed. The meaning of disability access can’t be considered apart from race, class, gender, sexuality, immigration status, education, housing, adequate medical care, and numerous other intersecting factors.  I’ve noticed in talking with other disabled friends and community members that many of us, especially near the onset of our symptoms or soon after our diagnosis, struggle to know what accommodations are available to us and even what we might need. This makes sense: many of us with various kinds of disabilities and chronic illnesses are kept out of public spaces by inaccessible infrastructure and ableist social frameworks. If we can’t connect with each other, how do we know who we are? If we don’t gather with each other, how do we know who we could be?  Rather than basic accessibility checklists that organizations put in their event registrations to fulfill ADA requirements, what if we had horizontal networks of accessibility mentorship? As my friend and collaborator Chava Kokhleffel recently called it, “disability mentorship” (a nod to the term “crip doula” created by Disability Justice activist Stacey Milbern Park to describe a disabled community member who connects other disabled folks with tools, resources, and survival strategies) can come in the form of knowledge-sharing: “These are the accommodations I usually need in this setting,” one friend might say to another; “I’ve accessed these resources before and wonder if you’d like me to share them?” is another mutual aid strategy; or we might ask each other a series of questions, such as “What tends to keep you from participating in events/projects/opportunities like this? What might help remove or reduce those barriers?”  I have been making work about disabled embodiment for a decade now, and I continue to be surprised by how frequently I forget that it is also okay to write, perform, and make art about subjects other than disability and illness. I mean, I don’t really believe in singular aboutness when it comes to art, especially poetry. But I do still, at times, buy into the belief that since it took so long to carve out acceptance for my sick body in my professional creative work, that departing from that subject can, at times, feel like a betrayal to all the work I have done before. But we—and here, again, I mean the chronically ill and disabled we across the vast spectrum of human embodiment, of which I am a part but whom I cannot claim to speak for—must be free to express ourselves on every topic that captures our interest. Atlas O. Phoenix’s brilliant short film Little Men and Peder Hagen’s evocative, melancholy performance of “Somewhere Over the Rainbow” are examples of the power that arises when disabled artists are not siloed or forced to explain the connections between every project and our disabilities. We may not wish to come out as disabled or ill. We may wish to describe ourselves as disabled but make work that seems not to be, at least on the surface, overtly tied to disability. We may not have a choice about whether or not we come out as disabled or chronically ill. We may want or need to make our disability the center of all we do creatively. Our approach may change over the course of our lives and careers; it may change from moment to moment or from project to project. We are not a monolith. The more I talk with other disabled and chronically ill beloveds who are also trying to make their way in largely ableist arts communities, the more I’m certain that holistic accessibility and adaptive organizing benefits us all. In a disability-centered task force I have been part of this year with Chava, we keep saying to each other: ACCESS IS FOR EVERYONE. This means that, yes, those of us with known disabilities and needs that are not considered socially normative do need organizers to consider and prioritize us, not just the “average” participant or audience member. But also, everyone can benefit from Universal Design that considers an array of bodies, minds, and spirits when making physical and virtual gathering spaces. Who loses when there is also an elevator next to the stairs? When the organization builds ASL interpreters and captions and visual description into their programming budget? When artists from across the disabled spectrum are invited to be on the panel, to present at the conference, to perform at the cabaret, to design the event, to run the organization, to decide amongst ourselves what we need, what we want to make, and for whom? That is to say, we all have a body, and our bodies inevitably need. Behaving as if our collective body is an afterthought, an inconvenience, or an irrelevant accessory in art spaces is not only irresponsible, but it means we miss out on some of the most important gifts of artists and the arts. To be embodied is to feel, to feel is to connect, and if that is not the point of being alive, I don’t know what is.