It was such a pleasure and privilege to interview Jesse Rice Evans, a sick & disabled queer Southerner, poet & rhetorician, and amateur herbalist & Tarot expert, whose book The Uninhabitable is forthcoming with Sibling Rivalry Press!
Why don't we start with your BIG NEWS, your first full-length book, The Uninhabitable, coming out spring 2019. What's the vibe, what brought this work into fruition, what did it teach you?
Eeeeek! This is so big for me and I’m counting the days until I get to hold my baby in my own hands!!!! The collection is very much exploring the experience of pain and illness, and much of the book was written through a kind of automatic writing with pain-brain: shutting off the rational mind and transcribing the muddied, jerky thoughts of pain brain. The result is a lot of pauses and jumps, a haltingly abject version of my more cognitive work. This process was revelatory in many ways: tuning into my body and its experiences without analyzing them proved difficult for me as a hella analytical rhetoric grad student, but trusting myself, including my sensitive body, to make sounds and my hands to record them brought me to a place of appreciation and compassion for my body that I’ve never had before.
Reading poets who similarly center the memories of the body, conscious or unconscious—Dawn Lundy Martin, my amazing partner Zefyr Lisowski, Natalie Eilbert—gave me the permission I needed to go there.
Your work is grounded in disability and chronic illness work, what is radical vulnerability for you? How does poetry, rhetoric, and pedagogy relate to your lived experiences of chronic pain?
Gosh. Writing is the only thing I’ve never been able to leave. I used to run away whenever I couldn’t deal any more, but my body and language are inescapable, despite all my work to convince myself otherwise. My vulnerability has always been hard to come by, but I’ve found that when alone, I am able to access the wounded places with more courage, reading Bloodmuck by Linette Reeman, Sade LaNay, Eli Clare as a source of strength.
Pain rhetorics, or how pain expresses itself, are fascinating to me as someone who now occupies Sontag’s “land of the sick” all the time. In my teaching, pain has demanded a co-starring role as it keeps me home on icy days, cold rainy days, and rly whenever it feels like it. Learning to listen and respect these restrictions has been intensely hard for me as the child of two Nebraskans with middle-class aspirations and as a retired waitress. So I cancel class. And I write on my phone while streaming Top Chef episodes.
How do you see the relationship between body and the digital? How does language affect the way you relate to your surroundings as a sick and disabled queer?
I love this q! For so many disabled folks, online space is the only place we get to hang out. IRL I still don't have many disabled friends (it’s hard to physically get together!), although i recently attended a retreat for folks with chronic illness organized by Suffering the Silence and made like 25 amazing new sick and disabled friends!
I feel like so many folks bemoan the prevalence of digital technologies, but for a lot of folks who are geographically isolated, poor, mobility-restricted, the web can be the only space we get to author our own identities in words and images. This seemingly little act can have big implications for housebound people or folks lacking the safety to identify and present as they choose for themselves. Maranda Elizabeth, a disabled femme based in Ontario, has written extensively about this, as has poet and performer Leah Lakshmi Piepzna-Samarasinha.
As an extension of my own digital embodiment, in professional settings, I also make sure to use loads of emojis, exclamation points, smilies as a means of preserving my real femme self in the digital world. I am more able to get away with this than any Black or brown femme person would be, but before I started my PhD, I promised myself that I would embrace my authentic subjectivity is all settings bc my privilege lets me!!! Rhetoric scholar Melanie Yergeau gets at some of these themes of integrating access in academic spaces that implicitly demand abledness, and I work to center my body in these hella intellectualized spaces. Christopher Bell, Piepzna-Samarasinha
Where do you see connection between queerness and disability? Where do you see alienation?
I do think that public derision towards queer and crip bodies is similar: we all know the stares, the sidelong whispers between cishet folks. Disabled bodies face extra scrutiny, I think, in ways similar to how the body is policed around gender expression, abledness is fetishized while disability is in turn pitied, mocked, scrutinized, harassed.
When I got sicker, to the point that it impacted what I could do in a given day, I was galvanized by disability activists who made connections between other marginal embodied identities. Writer and performer Leah Lakshmi Piepzna-Samarasinha makes many nuanced observations of how factionalistic identity can become, especially within frameworks of white supremacy, ableism, and capitalism, among many many others! Disability is *not* exempt from issues of white supremacy, compulsory cis- and heteronormativity, etc., but queer folks in my life—even those I love deeply—have very little in the way of disability competence, just as many sick and disabled white folks lack accountability practices around white supremacy. Many Black and brown, queer and trans writers who also experience sickness and disability have reflected on this: Christopher Bell, Aurora Levine Morales, Imani Barbarin, etc.
When I was first struggling with constant pain, brain fog, exhaustion, unstable moods, on top of my past experiences of psychosis and PTSD, many friends expressed their exasperation, ingrained ableist attitudes, and microaggressions surrounding mental and overall health. Queer public spaces are notoriously inaccessible: no seats, use of chemical fragrances and cleaners, flights of stairs—and very rarely is access mentioned at all. In fact, loads of QTPOC disabled folks who have called out inaccessible predominately-white spaces get harrassed, publicly lambasted, and threatened.
What are some practices or rituals that keep you grounded? How do you stay connected to your body and needs?
This is one of the hardest, longest-lasting challenges of my life. Coming out of a young adulthood steeped in trauma meant that I was good at helping other people feel better by being their drug mom or cooking for them or driving them somewhere. I became very good at suppressing my own needs, acting as though I had none.
To be honest, I don’t know how I would have ever gotten to a place where it felt OK to listen to my body if I hadn’t gotten sick. In a way, I am so grateful for dealing with dramatic shifts in my health at such a young age, as now I’m patient with myself in ways I never expected.
Weekly acupuncture and regular bodywork from my sweet friend from North Carolina at Yarrow Medicine and my gifted massage therapist Kayla Kou Mei Goff feel reciprocal: I get to support my friends doing amazing healing work and they help me focus on what my body is asking for. (If you’re based in NYC, hit them up!) My graduate fellowship means I have some disposable income for the first time in 29 years, so I shop for comfy things to make my home a haven (Cancer rising)—a privilege and necessity in my hectic city life. I have two stunning cats, many houseplants, and two generous and funny partners who support me and tolerate my irritable streak. And femme practices like coloring my hair, painting my nails, and caring for myself have become indispensable.
Navigating academia can be very challenging for sick and disabled queers, any words of advice?
If you find anyone sympathetic or an advocate, ask them for support! Ask for everything in writing—including fellowship placements, funding sources, commitments from faculty advisors—keep track of your work hours using a time tracker app, especially if you teach online/hybrid or have other remote work. I have a hard time processing aural information, so I ask for written meeting notes/agendae.
None of this is easy, but I’ve had to learn to be my own advocate. Ableism works because of widespread buy-in, and people who are charged with advocating for you are likely harboring loads of bias, overworked/underpaid, and won’t be able to empathize with your experiences. If it feels like discrimination, it probably is. Trust yourself, how your bodymind responds to interactions with ableist institutional spaces. Record everything as best you can, even if it’s just for yourself. And try to find accomplices in other ill folks, including people with mental health concerns &/or healthy disabled folks. Coalition-building helps!