The Brooklyn Rail

In the beginning of How to Tell When We Will Die: On Pain, Disability, and Doom, Johanna Hedva tells our fortunes. Hedva doesn’t tell us when and how we’re going to die, but they do “portend that no matter how it arrives, disability will arrive for everyone.” This, they argue, is what makes disability, in all its vast disparities, the most universal condition of all.

On the occasion of the publication of their essay collection, the writer, artist, and musician joined Dr. Victoria Papa on the Rail’s New Social Environment (#1082) to discuss their desire for disability to be more complex, care under capitalism, kink, and transformation.

The conversation that follows has been edited for length and clarity.

Victoria Papa (Rail): When you were writing How to Tell When We Will Die and imagining your audience for this book, who were you thinking of?

Johanna Hedva: The question of the audience was obviously a hugely important one, and also one that changed over the course of the writing. The book is a collection of essays that took me ten years to write, so it’s not a book that started out asking one question and then at the end I arrived at an answer. It’s a book that asks more questions than it answers. One of the central questions is, who is the “we”? In a lot of ways, the current political moment, and then certainly the political moment of the ten years I was writing this book, there is the question of “we”—who “we” are, what “we” are doing to each other, what “we” owe each other, is the “we” as a collective possible? How is it possible? What can be done? All of these questions are very huge.

It was important to me that “we” is in the title. It was important to me that there was space to think about universality that wasn’t a collapsed kind of flattened sameness. I have a quote in the book from Natalie Diaz, who I adore, where she said allness doesn’t have to mean sameness. Disability is a universal condition, but that doesn’t mean it’s the same for everyone. My project is really simple: I want disability to be more complex. I want there to be an expansiveness around this category that we would otherwise think is narrow and restrictive and limiting.

There are pieces in this book that can meet people who are first encountering things like illness or disability in themselves or may be taking care of someone else or a loved one. I also hope that there are pieces that can meet or land with people who’ve been in it for a while. I wanted the story of disability to be more than one story. I wanted to be respectful of people that might be like, I don’t want to be disabled. I didn’t want my book to punish them or shame them if they felt that way. I didn’t want to be in the business of selling triumph, like, “you can love yourself and it’ll be fine.” I thought it was useful to say, if you can, try to think about how your symptoms or your lived experience in your body, your embodiment, is different than the world telling you it means a certain thing. And feel into that space. You can be in pain and struggling and suffering, and that’s different than the world telling you that it’s shameful. That kind of opening up, that distinction, was important.

Rail: You write of the idea that there is “no greater intent to do care together than a willingness to do pain together,” and that care “can scare you, like a rollercoaster, show you viscerally how the law of gravity feels, and it can teach you, let you know briefly, what it feels like to escape gravity.” What does a politics of care that is bound up with pain have to offer us now? What does this dynamic between care and pain have to teach us about rebellion, resistance, revolution?

Hedva: I started writing “Sick Woman Theory” in 2014. It came out in January 2016. At the time, it felt radical to say that care was important politically. “Sick Woman Theory” was the first time I had thought through the politics of illness and disability and how that is attendant to larger questions of care, social care, and mutual aid. Over the years, care became a weird virtue signal without much behind it, especially in the art world. So I started to think well, what do I mean when I say care, or the politics of care?

I noticed that in the activist spaces and organizations that I was in—where we’re on the left, where we’re trying to work towards something—the minute there was conflict, real difficulty, real failure, it just fell apart. I started to notice the word “care” getting trotted out, almost as if it was a numbing agent—care implied numbing or forgetting or diminishing the sharp parts or the messiness or the harm or the conflict or the difficulty. It was the leveraging of care as a tool to control, a tool to surveil, a tool to dominate. That’s not care. That’s coming from a more carceral or punitive or curative idea.

Another way to say this is that if capitalism paid for care, it would be the end of capitalism. You can’t have capitalism and care in the same regime because capitalism pays for prisons and wars and weapons, and it cannot reconcile the resources being allocated to that way of doing things and then also allocate resources toward care. When I say “care” under capitalism, care is in scare quotes, because it’s not care. The kinds of systems that we have now are not care. They’re systems of carcerality. They’re punitive. They’re curative. It doesn’t make space for all of the messy ways that a body needs constantly, and has pain, and is difficult. “The body is a thorn in the side of capitalism”—a friend of mine just said that to me.

So when you start to prioritize things like care in practice, what does it actually mean? I think care means making support for the unruliness of the body, the expensiveness of the body, the needs that are always there. The pain, the harm, the violence that’s just sort of circulating all the time. Care has to be able to hold that. It’s a bummer that we don’t necessarily know that care is required until there’s pain first—on an interpersonal level, as well as a political level. The way we’ve built our world is that care comes as an afterthought. We saw that happen in COVID when suddenly care had to be prioritized. It made everybody’s lives so hard and miserable and difficult, and that was not because COVID changed the world. It was because the world kept functioning the way we built it. But COVID was demanding that we had to do it differently. We had to foreground care, prioritize care, put money into care. This is the primary thing that a society needs to do. And we couldn’t do it.

Rail: What has endured from the height of the pandemic? What systems are in place that allow for care to possibly happen, or for care to fail? I’m thinking about how this relates to an essay in the book, “Notes on Activism (AKA Notes on Failure).” Can you speak a bit about failure?

Hedva: It’s something I think about a lot because in working in activism myself, I got burnt out a lot. I felt despairing quite often. At some point, shifting my orientation toward what I was actually trying to do with my activism, what I could expect from it, and what it was as a practice, I shifted that to be like, “oh, I think it always fails, actually.” What I mean by that is, yes, it would be great if there wasn’t racism, fucking sexism, fucking colonialism, all this fucking nonsense! And yet, these are not just some things that we sometimes deal with. They are structuring our entire existence. With that as a default environment, any kind of activism where we’re trying to prioritize things like justice, equality, and the freedom to live a life that is not constantly being threatened by harm—trying to work toward those things in the world that we are in—will fail. It started to feel different to me when I put that in the beginning, rather than the end. I realized having doom loom, the dread of it in the future as the worst possible outcome, felt much worse than starting from doom and being like, “We’re doomed now. So what can we do? Where do we go from there?”

I noticed a lot of people giving up because they felt like they had no hope. What can you even do about anything? Climate catastrophe, genocide, capitalism, what can even be done? There’s a feeling of hopelessness, so we should give up, right? I don’t think we should give up. We should start to reorient ourselves to the fight. We are going to lose for sure, but that doesn’t mean we should give up. It means we should train differently. We should strategize our fighting differently. It’s very David and Goliath stoner-epiphany vibes. Capitalism is a huge opponent, and it fights dirty, and it’s rigged the entire game. Of course, we’re going to fucking lose that fight. But what happens if we get in the ring knowing that, rather than having this hope, “Oh, we’re going to beat it, my activism is going to succeed, and then we’ll be done.” What happens if we get in the ring, knowing that this fight is going to be a long one, and we’re probably going to get really beat up in it, and that’s actually part of it? What can we do with that knowledge? Don’t give up, but know that the fight is not fair, and so what are the strategies? How can we help each other do this?

Rail: I love how you are so forthright about how sex is part of these stories of illness, disability, and pain—for the obvious reason, because it challenges a mainstream perception that disability and illness are somehow incompatible with sex—and for the way it layers and complicates how we think of and practice care. Why did you decide to include these stories? How does kink enter this conversation for you, and what is it doing and teaching in terms of care?

Hedva: Thank you for asking about that. It’s something that was very important to me to have in a book about disability. Ableism doesn’t allow sick and disabled people to have any kind of pleasure in their “wretched bodies.” In my experience that’s just not the case. All the disabled people I know are the kinkiest, freakiest folks.

Disability really demands that you become a genius about how your body can transform. It transforms through pain. It transforms through all the ways that it’s limited.

Kink is a huge part of my life. I used to work as a pro-domme in my twenties. I wished that the conversations and dynamics I was having in my kink life were the kinds I could have in my care life. The premise of kink is that we’re all freaks. So how do we support that? Care is the opposite. Care is, oh no, you want that weird thing, or you need that, or your body’s doing something strange, we should manage you back into normalcy. You can’t be a freak about that.

I wish that care was done in the way that kink is done because in kink there’s a tremendous amount of mutuality. Power as a dynamic is right in the mouth. You have to negotiate it, you have to talk about it, you have to consent and communicate around it. But that is what makes it equitable. Care could really be done as a mutual act, almost like a field that we are all positioned in, rather than, I am giving care to you, you are taking it from me. There’s this debt logic in care as we practice it now. You owe me now, you’re less powerful.

I couldn’t write an entire book about the body and not have the body in all of these different states that are not only vulnerable and fragile, but also full of pleasure, full of power, full of ecstasy and transformation. I have noticed it giving some people a bit of confusion. It’s hard to maybe reconcile a sick woman on page one full of pain, not able to get out of bed, with that character on page fifty, punching men consensually for pleasure, and being a badass, having a good time, having her body be full of feelings, pleasure, ecstasy. It was important to me that this would also be in the story. I wanted disability to include more, I wanted there to be more, and I feel like that was one of the ways into that.

Rail: At the start of the book, you invite us to “watch something change” and to do it together. You say that writing allows you to watch what a thought does on the page, how it shapeshifts with form and syntax, and how such shapeshifting also feels like how your body feels. It’s like you’re weaving something here between change, writing, thinking, the body, storytelling. There’s a lineage of feminist and queer writing at work. I wonder if you could further tease out these connections. I find them really fascinating.

Hedva: I’m the sort of bitch that wants things to change. As a writer, what’s most exciting is to get a sentence down and be like, all right, we’ve consolidated meaning here. There’s something we’re building. It looks good. The words are all in the right order. Then my favorite thing to do is ask what happens if the period is changed to a question mark. Or see what happens if this word is changed to an antonym. The point of meaning is that it can change. As a writer, that’s what I’m most interested in exploring.

I write five hundred words a day, every day. I’ve done that for twenty years. It’s not that I write slowly; I write a lot. It just takes me a long time to feel like, in the writing, I’ve gone everywhere that I could go. I want to see what happens to an idea, to thinking itself, to a feeling, when the form of it has changed.

I realized this at some point when writing the book. There’s an acknowledgement of that in some of the essays, of, maybe I want this because that’s what happened to my body. I thought it meant one thing, and then, as I’ve lived in it, it’s constantly surprised me and confused me and changed to that which I did not expect. When I first started to get sick and disabled, I was just horrified. I think that’s very common when disability arrives for people. They’re like, wait a minute, this is not who I am. And they’re forced into this new knowledge.

When I’m making stuff, I just have a bunch of questions and want to be delightfully surprised by that which I don’t know. I’ll have an idea or a question or a thought and I’m like, “What happens if I ask this in an essay versus a doom metal record, versus a video game, versus a sculpture?” I guess I do that because it feels cool and fun, and because that’s what I’m trying to say too about disability—yes, of course, there’s pain and struggle and limitation and suffering attendant to it, but it’s also this incredibly expansive experience. It changes everything that you knew to be true about yourself, how you move through the world, what’s possible in your body, what’s possible in your relationships to other people. Ableism tells you that all of that change and transformation is bad. There’s a lot that sucks about being disabled, for sure, but there’s also a lot that’s really, really rich, and for me at some point, I just wanted there to be more.

Rail: You write that “tell” is the most important word in the book’s title and that it aligns with languages and acts of divination. This draws up questions of fate versus free will, and the question of how we can deviate from that which is determined/ diagnosed/prescribed. In one sense, this book is a testament to your fate, and in another, the telling in which you engage is a creative act of expansion, of taking what is and “produc[ing] more life, not less,” to paraphrase you. The book is deviating, in other words. How have the languages and practices of divination helped you arrive at the concepts that guide your writing?

Hedva: Telling—this is one of those words that I think about a lot. I love a word that has more than one meaning. They’re my favorite kinds. I was feeling all these ways about the experience that I was having in my own body around illness and disability, and then the world was telling me it meant a certain thing. I was getting told by doctors, by social workers, by therapists, I was being told quite a lot what I could do about it and what I could not do about it. It is really something to be told what your experience in your body means. I think this is true not just with disability, right? For example, being a white-passing Korean American person feels a certain way. It has meant certain things. It has brought me to certain experiences. Then there’s also what the world tells me that’s supposed to be, all of the ways in which I’m not Korean or I’m not white, or that I’m not allowed in a certain place.

I think that’s true about most identities. There’s an experience that we have around it in an embodied way, how we carry it, how we go through the world. And then the world tells you what it’s supposed to mean. These are different things and yet, what the world tells you it means has a huge impact on how you know anything. So it was important to me to really think about what disabled people are told all the time is true about them and how a lot of that is a lie. Or it’s not the whole story. It doesn’t have to be the whole story. I also like the idea of telling-as-foretelling, fortune telling, and storytelling. I think language, on some level, to me, is like a primary magic. You can write a sentence and, whoa, this is now true. Then you can write the opposite, and, whoa, that’s also true. It’s amazing to me that that’s how that works.

Also the title is my vibe. I’m a bit intense and dark. I’m very not demure, darling. My one hope is that this book can get us into disability 2.0. I hope that people are reading lots of disabled writers, engaging in lots of disabled art, that they know multiple different disabled people’s names and works and lives. I hope that I’m just one part of that constellation, and maybe mine is the doomy, dark, gothy, scary one, which is cute. I’m down to be that.