Lucy Blagg Talks to Johanna Hedva


A few weeks before Johanna Hedva and I started emailing back and forth, I was at an anti-racist workshop on the intersectionality of racism and ableism. One of the women there was Aria, a quietly commanding presence: white hair and black dress, powdery skin and a few missing fingers, in a wheelchair, fiercely intelligent and emotionally wise. I liked her immediately. I had just read Sick Woman Theory, and finding it relevant to the discussion at hand I brought it up to the group. Aria knew all about it. “People look at me and they write me off as disabled, fat, old, lesbian, mentally ill,” she said. “Sick Woman Theory is providing a language and an identity for people who are written off this way all the time. It’s saying we need to recognize that we’re all temporarily able-bodied, at best.”

Lucy Blagg: I wanted to begin by talking a little bit about what first drew me to Sick Woman Theory. I mentioned before that I’ve been diagnosed with depression / anxiety. A couple months back, I had an intense panic attack precipitated by the sensation—not a thought, but a physical feeling—of language’s futility; I felt myself falling into the cracks where narrative would not hold. This seems similar to your description of depersonalization disorder, of being “blasted into an abyss-like space where nothing holds together.”

I’m interested in this illogical space and its relationship not only to anxiety / mental illness, but illness in general. It seems like illness, and chronic illness in particular, evades our desire to make sense of it, to plug it into a neat syntax of cause and effect. And there’s a struggle over who gets to define and set the terms for illness. Early in Sick Woman Theory, you profess antagonism towards the the idea that the “Western medical insurance-industrial complex understands me in my entirety, though they seem to think they do.” You say, “They have attached many words to me over the years, and though some of these have provided articulation that has been useful, first I’d like to suggest some other ways of understanding my experience.” You then go on to offer several alternative ’causes’ of your chronic illness — astrological, intergenerational trauma, your own traumatic upbringing. You end by saying, “perhaps I am simply more permeable than is acceptable. More sensitive than is considered “functional.” Perhaps I’ve just got a thin skin and have had some bad luck.” All of the different ways of understanding / narrativizing your chronic illness from the outside are only ever partial explanations. In this context, your subjective experience of your own body becomes all the more important. You champion, in Sick Woman Theory, a radically subjective view of illness, saying, “This is for my fellow spoonies. You know who you are, even if you’ve not been attached to a diagnosis. One of the aims of Sick Woman Theory is to resist the notion that one needs to be legitimated by an institution[.]”

With all this in mind, I’d like to ask you—how did you come to write about your own illness? What limitations did you find yourself coming up against? Did you find it difficult to trust your own narrative?

Johanna Hedva: Sick Woman Theory emerged as a tool for my own survival. It is a way to hold space for and bear witness to that uncertainty—a kind of radical, even violent uncertainty—while still attempting to use language, narrative, and these tools that I know best. I am a writer, words are my home, where I feel most comfortable and agile, they open doors to other worlds, allow me to be free and alive in ways that nothing else does. Before I began writing my experience of illness, my experience of it felt exactly the opposite: I felt trapped, imprisoned, incoherent, and uncomprehending. The reality of my experience was something that I could not bear, and so the only tool I had to attempt an articulation, was to write through it, into it. On some core level, I believe that “I” do not exist outside of, or beyond, language, even if that language has yet to come. The “me” that is constructed through storytelling is the only one I know, or feel I can know.

I don’t make art or write in a conscious way—it feels more like it just happens to me, like breathing, as a way to keep me alive. I think that’s why I write and make so much (though I keep most of it for only myself): it’s how I am sustained. It’s my body and brain continuously saving my life, an automatic survival response. Similar to how a brain will dissociate consciousness from the body during a traumatic experience—it does this to keep the reality bearable.

I can remember dissociating since the age of five, though I’m sure it was happening before that; so in other words, my brain has been trying to save my life for as long as it’s been alive. It happened chronically, because I regularly witnessed the violence of my parents against each other and themselves (my mother was regularly suicidal), and when they inflicted that violence on me and my sister. Around age six or seven, I started to write stories, mostly with a first-person narrator of a young person, who lived deep within her own world, usually surrounded by violence and horror. I remember feeling like I’d written my first “real” short story at age 9. It was called “The Piece of Glass,” and is about a possessed, demonic piece of glass that shreds a young girl’s skin night after night in her sleep. I hand-wrote it out and illustrated it, with a lot of blood (red crayon), and I tried to get my school’s librarian to have a copy on the shelf. Some would say this was a “cry for help,” that I should have been immediately sent to the school psychologist. But I think of it more like my first piece of writing that I wanted out in the world because it articulated something very important and vital to my understanding of myself; in some way, I was able to understand something about my experience only because I had written it. It bore witness, it testified, to use Mia Mingus’ terms: it left evidence.

Writing my experience, writing my own narrative, since age six, has been my way of surviving in a hostile environment. For that reason, to answer your question, I have never not trusted my own narrative. It was all I had.

LB: In the beginning of your talk at Human Resources you acknowledge your indebtedness to other women writing about illness, mainly WoC—could you say a little bit about who they are? Are there specific thinkers / works of writing you feel influenced Sick Woman theory?

JH: Audre Lorde, Audre Lorde, Audre Lorde. And Mia Mingus, Mia Mingus, Mia Mingus. And Frida Kahlo is my special saint; I keep a photo on my altar of her in her bed holding her sugar skull. Also, right now there are some folks making work about living with illness and/or disability, or around vulnerability, precarity, or trauma, that I am either directly in dialogue with as friends and colleagues, or really motivated by: Carolyn Lazard, the Canaries, Amy Berkowitz, Anne Boyer, the collective Sins Invalid, Constantina Zavitsanos; and my dear friends who are also mystics and witches, Nickels Sunshine, Abhayada Dwan, and Amanda Yates Garcia. And most recently, I’ve been immersing myself in the work of Sylvia Wynter, who doesn’t write about illness, but is a major thinker in thinking outside and beyond what is possible under this regime, and why and why not. I’m really resonating with her work around the human as a hybrid being, of what she calls both “bios and mythoi,” or a being that is both biological and storytelling, so that “being human” is not a noun but a verb, a practice, meaning in relationship to and through, and the magic in that.
I think it’s important to say that my feminism has especially been informed by Black feminism more than anything else, not just feminism or intersectional feminism, but Black feminism. And my overall approach comes from a queer, poor, and chronically ill perspective, because those are perhaps the identities of mine that have influenced my own experience the most.

LB: Sick Woman Theory reimagines what activism looks like. You insist that public protest is not the only form of resistance, because that discounts everybody who cannot participate in protests for various reasons—because they’re physically unable to get out of bed, because their skin color makes them particularly vulnerable to violence, because they have anxiety/PTSD, etc. And by the end of your talk at Human Resources you’re offering the idea that caring for one another can be a mode of activism: “Because once we are all ill and confined to the bed, sharing our stories of therapies and comforts, forming support groups, listening to each other’s tales of trauma, prioritizing the care and love of our ill, pained, expensive, sensitive, fantastic bodies, and there is no one left to go to work, perhaps then finally, capitalism will screech to a halt.”

Care-work, historically gendered and racialized, has also historically been invisible and unappreciated as labor. As someone who works as a nanny, I’m often thinking about how childcare, in America, is still feminized, still mostly performed by WoC, and as such, still undervalued and underpaid. For you, how does care-as-resistance connect to the recognition of care-work as labor, and what does it look like in practice?

JH: This is a crucial question to how we—as anti-white-supremacists, intersectional feminists, anti-capitalist activists—can actually make something happen that is different from the oppressive, hierarchical structures that exist. To me, “care-as-resistance” is the answer.

In a recent conversation at the New School with Beverly Guy-Sheftall, bell hooks talks about how one of the reasons why she believes feminism is in crisis right now is because the theory got co-opted to align with a liberal individualist idea of freedom, so that one can use the label of “feminism” as a reason to do whatever one wants. In other words, it’s not about the practice of doing feminist things, and enacting change away from the imperialist white-supremacist capitalist patriarchy.

Sick Woman Theory proposes a mode of feminist practice that foregrounds community based on care, vulnerability, interdependency, and accountability to an other, to many others. You’re absolutely right that taking care of another person—whether they’re your own child, or another member of your family, or someone in need, or someone from a higher class than you—all of these forms of labor have historically been invisible, feminized, and performed mostly by women of color, and therefore not valued, compensated, or even regarded as labor. One of the main things being fought for and demanded by the 1970s black and WoC feminists was the acknowledgement that domestic labor, reproductive labor, is labor, and should be paid for, valued, and visible as such.

What white feminists have historically taken for granted is that women of color, poor women, and working-class women have always had to work, simultaneously for a wage outside the home, as well as in the domestic and reproductive spheres, taking care of their own families. Middle- and upper-class white women, when they demanded to be released from their domestic prisons to be able to have their own careers, left poor and working-class WoC behind. The 78 cents to the man’s dollar is how much a white woman makes. A black woman makes 64 cents, a Hispanic woman 54. And then ableism cuts into all of that: In 2013, it was legal to pay disabled workers of any gender 22 cents to the white man’s dollar.

On top of that, most of the working-class and poor people of color in America could almost be reclassified as a “service” class in terms of the jobs available to them. As maids, gardeners, busboys, janitors, servants, etc., they are the invisible laborers who keep the white middle- and upper-classes’ version of society going. I mean, it’s a fucking historical precedent in America that the “service class” were black slaves, and slavery has just continued in different forms (segregation, incarceration, etc.).

And this is not even to mention how it is in terms of citizens of other nations within the West’s imperial horizon, or native and indigenous communities. In terms of globalization, the labor of caretaking, nursing, in-home care, etc., is often performed by poor and working class women of color, often immigrants, often undocumented.

And then, combined with all of this, is the fact that these are exactly the people whose own care and health is violently denied by our society, who are seen as less “deserving” of care (that their illnesses and disabilities are not only their own fault, but also somehow “sickening” to society), who are constructed as not-human, which allows us to treat them inhumanely, and who, if they have access at all, don’t receive comprehensive health-care in terms of what is available to the wealthy (specialists, therapies, or even the choice of which doctor they want to see). So the issue of who does care-work, and how and if that work is seen and compensated, and then who gets to be cared for, in my opinion, is the central issue that brings us to the intersection of feminist, anti-white-supremacist, and anti-imperial-capitalist practice.

The idea of care-as-resistance, of caring for one another as a political practice, is motivated by a concern for how we are accountable to each other in a way that is not based on the hegemonic hierarchies of power, oppression, and domination, or the idea of self-possession as the determinant for who is considered human, and therefore valued. For an example of how this can work, I think of Toni Morrison talking about how there was a time in her life when she lived in a neighborhood in New York where several other prominent African-American women writers also lived. They were all mothers as well as professional writers. Morrison describes their group dynamic, that emerged unofficially—without talking about it, without anyone saying, Hey, I need this—where one woman would show up at another’s house with a bag of groceries, uncalled for, unannounced, and say, Okay, I’m here, I’ll watch the children for two hours. You go get some writing done. This emerged as a communal practice because they could not rely on anyone else but each other.

The other thing I think about is queer family-making. There are many queer minors forced to leave home, and what ends up happening, if they’re lucky—and many of them do it out of necessity—is they create a family, a chosen family, within a peer group that is primarily about shared resources and shared responsibilities to each other, as well as shared pain and trauma. I came out to my parents when I was 14. My parents were already abusing me physically and emotionally, so when I came out, they—well, to say it lightly, were not supportive. I finally left home when I was 16, and I was homeless off and on for the next several years. Most of my friends when I was a teenager were outsiders—queer, punks, freaks, homeless, mentally ill, kicked out of their houses, abuse survivors, etc. Of course, many of them were also visionaries, the fiercest, most brilliant artists I’ve ever known. Among ourselves, we made a kind of family that we could rely on.

I also think about a friend of mine who’s a sperm donor to a queer couple and who is still part of the child’s life. He’s not the father figure in the hetero-normative sense, but he is part of the family configuration. He regularly babysits so the moms can go on a date or do their work or have some time to themselves. I think more and more about what queer family-making is and can be, and how it is a model for how we, instead of only protesting the dominant structures, can actually create new ones.

This also makes me think of community groups or collectives that are support groups, or organized around a radical politics, or shared histories or identities, but which also have care and interdependency at their cores. I think about the support group I’m in for chronically ill people, and about support groups for abuse survivors, which I have also been a part of. These always feel revolutionary to me: just to be sitting together, sharing stories, bearing witness, testifying to that which society oppresses and keeps secret, and being together. As Fred Moten said in a talk at the New Museum, for Constantina Zavitasanos’ residency, “Who the fuck wants to be just one? That’s the loneliest number.”

So, to acknowledge the invisible labor that goes on in the home, in caring for another, in caring for the sick, the young, the old, in caring for each other, in caring for someone who’s in need, in caring for the homeless, in caring for refugees, etc., etc., and then in the radicality of being together, of hanging out, of discussing ideas, of having fun together, of laughing with each other, of listening to each other, of telling stories––this is the only way I can imagine a change that is manifested by the doing of it. By which I mean, this is the practice I want to be engaged in, the kind of life I want to live, what I want to do. I am very interested in critiquing, of course, what I see is wrong, oppressive, violent, etc., in our world. But I’m much more interested in creating a new, different reality that is not that. And the thing that I want to be creating cannot be done alone––it is an interdependency motivated by a politics based on kindness and care and empowerment. I want a version of the self that is not free to do whatever it wants through individualism, or some colonial idea of self-possession, but one that is empowered through and by its interdependency with others.

LB: I’m curious about something you said earlier, that ‘the words in themselves “Sick Woman Theory,” are kind of this rhetorical provocation that I want to set up in order to undo.’ Can you say a little bit more about that?

JH: To set up the “Sick Woman” as the subject position of a theory was to try to instantiate a variable: to start somewhere––with “sickness,” “womanness,” and even “theory-ness” as categories, as identities, as descriptions of an experience––and then follow those out, play with them, critique them, work with them; excavate the variations, the particularities, the possibilities; how they function in different contexts; how they can change, be useful or not, be critical or not, be an opening, an alternative. So Sick Woman Theory is an attempt to reveal how the “sick woman” came to be, in terms of revealing what political, social, economic, and cultural conditions created her.

It’s important to me that people know that Sick Woman Theory is me beginning somewhere, and in the Buddhist sense, I started from where I am. I am classified as a “sick woman” by this society, by the medical-industrial complex, even among my social circles. But I don’t accept that label as that which would best describe me, and so this is my attempt to work through the political conundrum that is my reality and identity as it is constructed according to the institution’s terms but not my own. I think a lot of “sick women” feel that way too. This is not to say that we aren’t actually sick, or suffering from illness, disability, or vulnerability in a very real way—we absolutely are. Sick Woman Theory is also a grappling with that: how our illnesses are our own in each of their specificities, and also how being sick or disabled or vulnerable constructs us as political subjects. I hope Sick Woman Theory is a way of critiquing and interrogating how being sick operates in terms of ideological values, political agency and visibility, and as a set of social and cultural signifiers.

An important thing that I want to address is that some people feel that Sick Woman Theory misgenders, in that it implies that we are all literally sick women. That’s not what I mean. I understand that the category of “woman” can often exclude, and that not everyone identifies as a woman. I in fact don’t either, I identify as genderqueer (the irony here is that I have endometriosis, a disease that is turning my whole body into a uterus, so that I’m forced to deal with my “female-ness” all the time). The rhetorical move of the “sick woman” as a political figure is to insist that being sick in this society feminizes as it pathologizes, delegitimizes, and renders people invisible. To be vulnerable, to require care, to be “weak” or “sick,” in this world, categorizes a person as other than the presumed, default, universal subject of the “Healthy Man.”

Following that, to set up Sick Woman Theory was to challenge the rhetorically and historically dominant universal subject of the “Healthy Man.” Almost every Western capital-T theory—or system of categorization that predicates a system of codified knowledge—presumes a male who is white, straight, healthy, and propertied as its subject, so that it can define who is not that. I want to to push back against the universal subject position as being a thing that is ever any good; I don’t think any universalizing theory is useful. To universalize, in general, is a kind of violence, an erasure of nuance, an exclusion, an “us versus them.” So, for me to perform the rhetoric of such universalizing theories, and then proceed to illuminate and draw attention to the particularities, complexities, and intersectionalities of different kinds of experiences, was me being perhaps a little cheeky or provocative (and it may or may not have totally worked). What I mean is, as I quote Adrienne Rich in the article, “This is the oppressor’s language, yet I need it to talk to you.” Or, maybe this is a kind of Spivak-ian inspired “strategic essentialism,” in that I’m drawing attention to a group––those who have been deemed by society to be “sick” and therefore feminized (I feel it’s important to say here that there are many white, propertied, cis-het men who absolutely fall under the category of “sick women”)––so that we can consider, critique, and hopefully change the political conditions that have constructed us as such.

To be clear: there is no universal experience for women, for genderqueer people, for illness, for disability, for poor people, for those who’ve been marginalized, for those who’ve been oppressed, for those who’ve experienced trauma. But there is this regime of colonial-imperialist, white-supremacist, neoliberal, ableist, capitalist, cis-hetero-patriarchy that we are all living under and which affects us all in a violent way, though each impact is different and depends on the group, the individual, the specific circumstances, etc. I mean Sick Woman Theory to draw attention to a set of conditions––political, social, cultural, economic, etc.––that are intersectional, meaning that they cut into each other, cross each other, and are in between. There’s an important difference between inclusivity, which I see as something that can leveraged as a universalizing strategy that erases difference in favor of similarity, and intersectionality, which I see as the practice of honoring and respecting difference in a way that can lead to solidarity. Sick Woman Theory is a way to begin from a category that for many of us feels not to be who we are, and use it as a lens to illuminate our differences and our interdependencies, in a way that is honoring, empowering, and liberating.

Be sure to see Johanna’s performance today, at Human Resources 6-11 PM.
More info can be found here!