If Dismantle was the place you first encountered Elizabeth Rooklidge’s work (read “On Sickness” if you haven’t already), you’ll know her both as a poet and artist. However, if you have the privilege of knowing her personally—as I do—you’ll know Rooklidge as the kind of person who makes “doing it all and then some” look easy.
In March of 2020, she founded HereIn Journal, a digital publication dedicated to thoughtful exchange around contemporary art in San Diego, California, where she serves as Editor and frequently contributes writing and interviews. She also teaches art history and museum studies at several universities, including the University of San Diego, and works an independent curator for art institutions across California. In the background of all this, however, she is also a diligent and omnivorous researcher. On any given afternoon, you’re likely to find her surrounded by stacks books on art, history, theory, poetry—you name it, she’s probably read it.
In the following conversation, we discuss her experience with chronic illness, her relationship to the idea of “usefullness,” “stuckness,” and “work,” as a chronically ill person, and the reason she surrounds herself with art and books and films.
Justin Duyao: You have been thinking about, researching, reacting to, interacting with, and making art about chronic illness for a long time, now. In my mind, this area of study has been foundational to every facet of your career. You’re passionate about it, of course, but it’s also an inescapable part of your lived reality.
In your poem, “This Thing,” you wrestle with the idea—with the hope—that, rather than being a limitation, sickness could be useful to you, that “I will be useful, / for brief windows / in time. In sickness, / despite sickness / maybe, even, because / of sickness.” These lines were gut wrenching, first of all. As was the conflation of sickness being useful and you being useful. But this poem also glimmers with so much hope, because I know this idea—this hope—is the reason you get out of bed in the morning. Even if “getting out of bed” means staying in bed but working your ass off anyway.
Can you tell me more about the ways your experience with chronic illness motivates your work?
Elizabeth Rooklidge: I’ve struggled with multiple chronic illnesses throughout my life, so illness has directly shaped the work I do—mostly by demarcating what I can’t do. There are certain tasks, activities, hours, and ways of being and thinking that my body just doesn’t allow for. Early in my career, when I was working as a museum curator and had just been diagnosed with the neuroimmune illness myalgic encephalomyelitis, I felt that my limitations rendered me utterly useless, because I couldn’t do everything the ideal curator can do. I was, in my mind and (I was sure) the minds of everyone else, a failure. Not strong enough, smart enough, dedicated enough to do this thing I had given my entire life to.
It wasn’t until five or so years ago that my understanding of all this stuff was turned on its head. I stumbled across a book called How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers (Simon and Schuster, 2010) by Toni Bernhard, who also has myalgic encephalomyelitis. I actually have a number of problems with the book, but the thing I took away from it was that Bernhard wrote the entire book while extremely ill. She did it in bed, in tiny increments, even just for a few minutes at a time. All those efforts added up to a very real, substantive thing.
Reading that, I suddenly felt that my intellectual life didn’t have to completely drain away while I was sick, and it was clear that I needed to reinvent what the structure of what “work” looked like for me. When I say “work,” I don’t mean labor in the capitalist sense, I mean vocation. The doing of the things that mean the most to me, that tie me to other people, that make me a participant in the larger world. Or the things that, to circle back to your question, make me useful.
At that time I was spending most of the day resting on the couch. I would usually have an hour or two in the morning when I felt okay, when my brain was relatively sharp, so I would use that bit of time to work. I started HereIn, an online publication, because I could do it reclining with my laptop propped on a pillow and my cat asleep on my legs. I started writing about artwork through the lens of illness. Eventually I started making my own visual art on the subject, and I began writing poetry. I would never have done any of this if I hadn’t been ill. I think I tend to intellectualize difficult experiences—not to escape the pain and grief (I mean, I can’t) but to instead add a generative dimension to it. To give it meaning. So chronic illness moved from shaping my work to actually motivating it.
JD: I appreciate that you clarified the difference between a capitalist idea of work and a vocational one. It made me think about how the idea of a hardy “protestant work ethic” is tied up in all this, as well. The way our culture assesses people’s value—whether they’re a writer or an artist or not—seems always to come down to how efficient they are, which makes inactivity (i.e. “laziness,” “sloth”) an inherent sociocultural sin, regardless of the forces that cause it.
With that in mind, it’s especially impactful that you’ve found a way both to reject and reclaim that way of thinking. You work hard, yes. But you do it because that work connects you to other people, helps them reframe their experiences in their bodies—of art, beauty, pain, healing, etc.
A lot of the conceptual work you seem to be doing in these poems involves unpacking what we mean when we talk about things like “illness,” “usefulness,” “stuckness.” I especially love the way you flip the idea of being “stuck on the couch” in your poem, “Traveling”:
For how can one be stuck
when one has
books and music and
art and films,
each a glimpse into the minds
that make up the whole world?
Is this part of the reason you’ve fallen so in love with art? Or—to avoid the leading question—what is it about art that keeps you coming back to it?
ER: Yes, absolutely. Art transforms my world into an enormous one, even if I don’t leave my couch. While much of my art writing focuses on illness and disability, I’ve had the chance to dive into subjects as wide ranging as funerary practices in Egypt, the history of palm trees in Southern California, familial memory amidst the Iranian diaspora, feminist art practice of the 1960s, and the development of gynecology in the 19th-century United States. The possibilities for thought, for conversation, for connection are endless. I can’t imagine life without that sense of possibility. Art offers transcendence. Chronic illness may keep me physically pinned in one location, and pain might tie me to the here and now, but art allows me to transcend time and place. It offers me the chance to travel freely to the widest and weirdest corners of the world.
I’m actually doing a lot better these days, physically. I was lucky enough to receive treatment for myalgic encephalomyelitis by a specialist at Stanford—a real privilege—and it has helped immensely. But I still have serious limitations and I’ve noticed that the awe I find in the way art functions has carried over from when I was very, very ill.
JD: I love what you’ve said about art allowing you to transcend time and place—the here and now. That’s what keeps me coming back to it, too. I’ve also found—and I know we agree on this—that art often challenges me to view the world in new ways. With art’s transcendence comes newfound perspective.
I understand this to be part of the aim of your project, Sick Women (2023-ongoing), excerpts of which you’ve included in your piece, “On Sickness.” In your own words, “Sick Women acts as a call for care for more thorough representation; for a less idealized, more veritable depiction of the illness experience; and an art that actively resists ableism’s reductive image of the sick woman.”
Earlier, you mentioned that Toni Bernhard’s book helped you reframe your relationship with chronic illness. Are there other books or films or artists or thinkers whose work has had this same effect?
ER: Oh my goodness, yes!!
- Finnegan Shannon
- Katherine Sherwood
- Park McArthur
- Emma Jones
- Carolyn Lazard
- Johanna Hedva
- Eli Clare
- Emily Rapp Black
- Sergio del Molino
- Alice Hattrick
And most of all, Havi Carel. She’s a philosopher in England who has developed the framework of a phenomenology of illness. I am obsessed with her book, Illness: The Cry of the Flesh (Routledge, 2018). All these thinkers have helped me understand that life in a chronically ill body is profoundly worth living and that my hard-earned insights are valuable far beyond the little world of my couch.