Hedva

Before any of my other identities or occupations, and no matter what I said, did, produced, or defined myself as, I saw that I was now defined by society in terms of the care I needed—and that this was true for anyone defined by care, whether they “gave” it or “took” it—and this was a raw fucking deal. By medical doctors baffled by my symptoms and dismissive of their validity; by social workers and bosses and other cogs in the wheels of capitalism who demanded the continuity of my labor while simultaneously denigrating me to the category of worthless because my body disrupted my labor’s continuity; by institutions who swept in to finesse my condition into something that could be rendered into an art-historical and cultural product; by friends, family, lovers, and enemies who didn’t believe it could be as bad as I said it was: I was now seen as malingering, a burden, a drain on resources, possibly faking it, certainly hysterical, a thing resplendent with pathology—simply because I had a body that needed more than it was supposed to need. Who decided this—who exactly was the arbiter of what a body was supposed and not supposed to do, need, and be—decided a status that was not in fact produced by my internal condition. No, this was the accumulation of a thousand tiny and not-so-tiny external events, tones of speaking, methods institutional and otherwise of disregard and dismissal, mechanisms built to dole out pathology to a thing like me. As a sick person, I watched as the perceptions of others amassed and clustered onto me, like a little pile of arrows that got aimed, shot, and stuck. If one arrow was tweaked, they all started to move, and it hurt, the pain went deep. After a while, I couldn’t tell where the pain came from, if it originated from somewhere inside me, or was caused by something outside of me that had gone in too far. I knew that this was how ideologies of oppression work: they seep into you, get into your cells, hunker down and dig in and make a home out of you. I also knew that, no matter where it came from, the hurt was real, it sounded like my own voice, it lived in me now. But it was pain that had very little to do with my actual illness, and what fucked with my head the most was realizing that the internal condition of my illness—which felt vastly multiplicitous in what it made within me, all the worlds of experience it took me to—had been erased in favor of the external value placed upon it, which was carcerally narrow and confined to mean a set of things that I did not particularly agree with, nor consent to being. This erasure did not happen by accident. It was the intended outcome of a larger system of institutions—medical, cultural, capitalist, statist—and the ideologies that feed them—classist, racist, white-supremacist, imperialist, colonial, patriarchal, cis- and heteronormative, sexist, ableist. For the benefit of these systems, I realized that the most common and universalizing condition of life—that our bodies are fragile, get sick, need rest, need support, that they need at all—had been twisted into the measure of one’s own individual failure, something to be ashamed of and sorry for and kept out of sight until the symptoms passed and things could return to “normal.” By design, this is how the world is built—for whom? Why?

Johanna Hedva


I tried to explain to this woman that my rider is a way of taking seriously the fact that, even if we are told we have to, we cannot do this alone. Care is always a deficit, access is always insolvent—and that’s the point. This is because the body, by definition, is a thing that needs support—it needs food, rest, sleep, shelter, care. I like to truncate this definition, to make the body simply a thing that needs, period, because what else would support be—but needed? The body’s dependency is its ontology: it cannot survive alone unto itself, even if it wanted to. Yet we’ve been taught that such dependencies, such needs, are abnormal, disgraceful, an index of one’s inadequacy. Capitalism and its attendant ideologies have used powerful magic to make us believe the opposite of what is true: They have persuaded us that the most important force on earth is one’s individual will and the ability to manifest it, regardless of what that would require in terms of material resources; they have convinced us that any one person’s success is the simple result of a decision they made to thrive, and not because of the support any individual requires to do anything, on any scale, always. They have induced us to think that the failure to lead a life of wealth, ease, comfort, and privilege is because that person just couldn’t get it together, couldn’t pull themselves up by their bootstraps, wasn’t willing to put in the work. This is a mighty myth, one that is vaunted as universal, and it is the vehicle for that most romantic and nonexistent of subjects: the man who makes new worlds simply because he wants to, who shapes his destiny of his own accord. His body cuts through the void without history or politics or needs of any kind, no tether to anyone or anything else. He is not us, because he is impossible—but we all wish he was us, we all throw ourselves at his feet, try to make ourselves in his image. What is required to sustain this myth? Who hoists him up? Who is that behind him, in the background, helping him get there, defining him as what she is not?

Johanna Hedva


My Access Rider is not about sharing the load so that we can suddenly be in the black: it’s about redefining what being in the red means, what being insolvent to each other does, and it’s about acknowledging that we will always be there, covered, totally, in red.

And yet we’ve built our world as if this fact deviates us from where we should be. We’ve framed care within the context of debt—where my “giving” care to you means I’m depleting my own stash, and your “taking” from me means that now you owe me—and although we’ve made debt into an index of our deficiency, we’ve also made it the only possible condition of life under capitalism. To be alive in capitalism is by definition to live in debt, and yet we’ve defined debt not as a kind of radical interdependency, as the ontological mutuality of being alive together on this planet—which it is—but as all that reveals our worst, what happens when we fail, a moral flaw that ought to be temporary and expunged. By doing this, the omnipresence of our need is framed as a kind of weird bankruptcy that happens only to the weak—which is a fucking canard. The logic of capitalism states that the person who needs support from society is a burden on that society, but this logic can only work when the premise holds that our natural state is one of surplus—and it is not. Yes, it might be nice to labor without limits, survive without support, live without loss, decline, and fatigue, but that’s not how it is.

Johanna Hedva