sick woman theory: an interview

Johanna Hedva
Content Warnings
"History has equated disability (or sickness, in the language of Sick Woman Theory: the absence of wellness) with monstrosity..."
Dec 28, 2020 9:50 PM


Brianna Albers: History has equated disability (or sickness, in the language of Sick Woman Theory: the absence of wellness) with monstrosity, placing shame, guilt, and self-hatred on the shoulders of those who do not conform to the world's definition of what it means to be human. You speak to this a bit in your essays, in the sense that "de-persons" are othered. They are proved less than, imperfect, inhuman—indeed, they are not allowed to be.

In "In Defence of De-persons," you discuss what "[Sara] Ahmed would call a 'melancholic universalism': 'the requirement to identify with the universal that repudiates you'." Later, you say that, "it's the throne itself that we must tear down: the throne on which the universal sits. ... [Agency] can only function by constructing against its human, the monster, the monstrosity of the Other." In many ways, this is what Monstering is all about: taking our sicknesses, our disabilities, and embracing the sociocultural "monster" they've made of us. Thus, Monstering is an identity, but it is also a mode of operating. We are monsters. We are monstering—reclaiming—our right to exist.

Can you tell us a bit about how you came to identify with the repudiating universal? What led you to embrace the monstrous other?

Johanna Hedva: When I was younger, I yearned for the universal because I thought it would save me, validate me, include me. But I don't yearn for it anymore. When I started to engage with the thinking and thinkers of Black theory and critical race studies, particularly Afro-Pessimism—I want to name a few: Saidiya Hartman, Christina Sharpe, Frank B Wilderson III, Jared Sexton, and Fred Moten—I began to understand how the entire concept, history, deployment, and institution of the Human, as such, is insolvent.

The instinct to identify with the universal is a common one because every infrastructure of belonging in our world is pointed toward it as the ultimate and only goal, and relies upon it as the core organizing principle. But I'm starting to realize it's an instinct that can't withstand critical consciousness, by which I mean, once you start to understand how oppression and domination work, you start to understand that the universal is a bankrupt subject position. Not only is it violent, and the instrument that is used by oppression and domination, but it is also a fantasy. The universal promises entry into a sacrosanct humanism, but that is an empty promise toward an empty place.

The mythic norms sutured to the universal human—whiteness, maleness, straight-ness, cis-ness, middle-class-ness, abled-ness, sane-ness, etc.—are constructs. They are just as constructed as what those categories are said not to include. And, perhaps most importantly, they are irrevocably reliant upon each other; they cannot exist without the Others. A human is not a human without the definition, and presence, of a monster.

Of course, just because they are constructs doesn't mean they don't have material effects. These are the very things that make our world. The word "construct" refers to building something, as much as it refers to ideas or concepts. So, the question becomes, how is the idea of "human" made, materially as well as ideologically? What does it require to be built? Or, maybe I should say, who does it require to be built?

BA: Is Monstering a source of power and reclamation, or is there grief in the ritual? Do you ever struggle to identify with the repudiating universal, or is it something that comes easily, if not effortlessly, for you?

JH: I like to describe my experience as one that requires constant vigilance. I like the word "vigilant" because it implies the act of keeping watch in a devoted way, like a vigil. The act is one of listening, paying attention, respecting (as in, to look again), and honoring the history, letting the evidence be seen.

BA: In "Sick Woman Theory," you propose a theory "for those who are faced with their vulnerability and unbearable fragility, every day, and so have to fight for their experience to be not only honored, but first made visible. For those who, in Audre Lorde's words, were never meant to survive: because this world was built against their survival."

Both Monstering and Sick Woman Theory seem to resist the idea that monstrosity, or sickness, is or should be equated to abnormality—that there is power in embracing that which the system deems "different" or "wrong." You write in "In Defence of De-persons" that we are "disordered, messy, incorrigible," and "in relationship to others and interdependent on each other, as much as we are each of us different—and that is fine."

Do you think Monstering and Sick Woman Theory coincide or intersect in some way? Is it possible for the two theories to complement each other, if not support each other?

JH: I can't speak to the goals of your project with monstering. The goal of my work is to interrogate not only how normatives become established as normative, but also how the categories of the abnormal shift, assemble and re-assemble, transform and disintegrate, and occupy different spaces of meaning. I think we have to imag(in)e ourselves as our own authors as much as possible. I don't think it's enough to rely on the ontological categories produced by those in power; I think we have to devote attention to how we might exist beyond, and even without, them.

When I think about how we come to understand ourselves and each other outside of the place of the normative, I get the image of a live wire in a pool of water: fluid, charged, dangerous, and requiring all of our attention to stay alive.

BA: So you're saying there is power to be found in liminality. That is, instead of aligning ourselves with the normative—even if, in the context of Monstering, alignment becomes identification with the monstrous other; "monstrosity" is still considered an ontological category, despite the negativity often associated with it—, we move beyond delineated spaces to craft our own meaning. Is that right?

JH: Partly right. But I think eventually moving beyond the binary of human/monster altogether is what I'm saying. I really dig what you say about crafting our own meaning; I guess I would place a lot of emphasis on what exactly that crafting process relies on to work.

This question made me think of a quote in Eunjung Kim's recent book, Curative Violence: Rehabilitating Disability, Gender, and Sexuality in Modern Korea, where she writes: " many ways liminality is not automatically transgressive. Indeed it might instead be instrumental to maintaining boundaries, if the boundaries are not destabilized together."

In other words, I think transgression is always relational and that resistance takes many forms. I think monstering as a mode of resistance can be effective within a certain context and for a certain time, but nothing should be taken for granted as fixed and stable when we're talking about political resistance. There are places and spaces where monstering would not be an option whatsoever, but then there are places and spaces where it could be the only option.

I'm not saying one shouldn't embrace an identity that's been reclaimed from a tradition of monstrosity—I'm saying that it's only the beginning. And I guess I'm saying this because I just got out of another hospitalization, and then had my birthday, so I feel a bit old and tired. I've been participating in activism for 15 years, and now I'm in the mid-30s grind and realizing that it's no longer enough to talk the talk.

There's a wonderful exhilaration when you embrace yourself in terms of everything "they" told you was wrong, and that exhilaration is important and cathartic, and really helpful in organizing your thoughts and coming to a critical consciousness. But after it comes a lot of hard work toward figuring out how exactly to practice resistance in material terms of struggle and perseverance. This is work that feels mundane and not so exhilarating, because it's about daily life, little things, everyday all-the-time decisions and actions, and it can feel impossible sometimes, and so much easier to rely on old paradigms and strategies—but this is the work we have to do.

BA: You often speak to intersections of identity in your writing, particularly with regards to race and white-passing-ness. How has Sick Woman Theory transformed, or perhaps even recreated, the way you approach these sites?

JH: I wanted you to ask a question about this because it's something that makes me uncomfortable, and I want to talk more about it. The white-passing experience is a weird one. I often feel like an intruder, no matter what kind of place I'm in. There's a lot of confusion in how to identify, which spaces I can inhabit, and I always feel separate and apart from any group. It feels like being a spy in hostile territory when I'm in white spaces. Because I have access to their spaces, I'm like the double agent they don't know is there to take the whole thing down.

In my mind and body, I am a disabled, genderqueer person of Korean heritage. But I pass as white, which is huge and cannot be undervalued, because it bestows upon me white privilege, no matter how I feel or genotypically what I am. Also, at least these days, I'm trying to serve some femme realness, and, for the moment, don't need my chair or cane (my disability is usually invisible). So I'm just passing-passing-passing into all sorts of privileged spaces. This means there's enormous tension that constantly needs to be negotiated, in terms of my perception of myself and my experience as a political being, which is always at odds with how I am read by society and how much privilege I'm afforded.

When I started writing about my experiences of disability, trauma, growing up with a colonial legacy that was not talked about, gender, queerness, etc., it seemed like an opportunity to use this duality, this spy-in-hostile-territory place, and also, personally, to burrow into how uncomfortable it is.

To say it simply: I've been trying to use my white-passing privilege to get white people to listen to me critique whiteness; I'm trying to use my femme-presenting privilege to get cis-het people to listen to me critique cis-heteronormativity; and I'm trying to use my abled-passing privilege to get abled people to listen to me talk about disability justice. But "trying" is the key word here. I hope it's working.

BA: You talk about the need to "imag(in)e ourselves as our own authors as much as possible"—an important concept, to be sure, but an intimidating one as well. Do you have any advice for those interested in making their own meaning? How do we step into liminality, especially when we exist in a world that relies so heavily on constructs?

JH: When I say that we have to imagine ourselves as our own authors as much as we can, I mean the whole range of stories, not just the ones that affirm and embrace, not just the exhilarating moments, not just the stories that are "good" representations of disability. In this way, I really love your project of monstering, because I'm also talking about ugliness, messiness, ambiguity, difficulty, struggle, bearing witness, fucking up, being fucked up, and troubling the categories altogether. It's about resilience, not perfection.


JOHANNA HEDVA is a fourth-generation Los Angelena on her mother's side and, on her father's side, the granddaughter of a woman who escaped from North Korea. She is disabled and genderqueer, and makes a living as a witch. She is the writer/director of The Greek Cycle, a series of feministed and queered Ancient Greek plays that were performed in Los Angeles from 2012-2015, in non-traditional venues, such as a Honda Odyssey minivan for her adaptation of Homer's Odyssey. Her writing has appeared in Black Warrior Review, Mask Magazine, GUTS, PANK, Two Serious Ladies, Eleven Eleven, Entropy, DREGINALD, and The Journal Petra. Her novella, On Hell, a surveillance-dystopia sci-fi retelling of the Icarus myth, will be published by Sator Press in 2018. She is currently working on a book called This Earth, Our Hospital, which includes the essays "Sick Woman Theory" and "In Defense of De-Persons." Since 2016 she has lived in Berlin where she sings, plays guitar, and drags it up in the noise-punk band Important Part.