Future Present: Talking with Johanna Hedva About the Luxury of Our Needs

So many are rushing to get “back to normal” — we think we can do better than the “normal” we came from. Business as usual was good for those in power, not for us. Future Present explores what we’ve lost that we’re better off without, what we can build in its place, and what new futures and ways of being we can imagine in this space of possibility. This series is launched in recognition of Autostraddle’s investing in a new editorial vision, new relationship to community, and top-down restructure of priorities and resourcing. We’re asking our community to invest in these possibilities along with us, and sharing this series as a promise of what we can do and be. This series is intertwined with our fundraiser to keep up the Autostraddle we love, and at the same time fuel a vision led by Editor in Chief Kamala Puligandla and Deputy Editor Carmen Phillips. Will you help us build the Autostraddle of your wildest dreams?

Months ago, when the twin arcs of the pandemic and the uprising started converging in front of us, while I was dropping off mask donations for protesters and all the hardware stores were sold out of both gloves and traffic cones for capturing tear gas canisters, I found myself thinking about a piece from writer, artist, musician, and astrologer Johanna Hedva I had read in 2015, originally in Mask Magazine. I had just organized a funeral with over Zoom for a family member lost to COVID, the police were shutting down the highways every night, and I couldn’t stop thinking about Sick Woman Theory. When I revisited it, I understood why. “How do you throw a brick through the window of a bank if you can’t get out of bed?” Hedva asks; it was the first place I was introduced to the anticapitalist power of material care, and of communities organized around it:

“The most anti-capitalist protest is to care for another and to care for yourself. To take on the historically feminized and therefore invisible practice of nursing, nurturing, caring. To take seriously each other’s vulnerability and fragility and precarity, and to support it, honor it, empower it. To protect each other, to enact and practice community. A radical kinship, an interdependent sociality, a politics of care.”

The truth that there was no “going back to normal” was crystallizing for me and my communities and within it, the seed of the idea that that might not be bad, that this time held possibilities for radical change as well as mourning. I wasn’t sure what that would look like, but I knew that Hedva had already known more about this moment back in 2015 than I did now in 2020, and wanted to ask them what they thought about what comes next. This was the conversation we had about that future, as well as moving beyond a symbolism of care, why living interdependently won’t always feel good, whether America will end in 2024, and being generally pro-doom.

(If you’d like to read more like this, Hedva’s next book, Minerva the Miscarriage of the Brain, is available for preorder and comes out September 2.)

Rachel: So we’re talking about how things have changed, both in terms of the world and in terms of like, our communities, and thinking about how they could continue to change. I’m curious about how you feel like you’ve seen things change in your families or in your groups or in communities around you that you’ve been part of since the pandemic started, since the global uprising started.

Johanna Hedva: I think that all of my disabled friends, myself included, crip fam, felt like we were well-equipped to deal with this kind of situation. All of us already take all of these precautions and are careful in terms of potential risk-spreading factors, and our mutual aid and communal care networks were already set up because we’ve been relying on them to survive anyway. In COVID-19, we’ve watched people on a large scale start to wake up to these same concerns, because it affected them for the first time. So that was kind of surreal. There were parts of it that were really galvanizing and felt full of hope, like, “Hey, now that you’ve also experienced this thing maybe you’ll take disability justice more seriously.” But I think it was equally triggering and traumatic to see and be reminded of how entrenched ableism is and remains.

I have been thinking a lot about what I was trying to talk about in “Sick Woman Theory” — and I used the figure of the “sick woman” as a way into that conversation — which was to talk about how anyone who is defined by care in society is devalued. So, whether that’s “care” in the form of labor that involves care — nurses, hospital workers, people in the food industry, grocery workers — as well as anyone who requires care. Because care — to need it, to give it, whatever — is feminized, and in an essentialist way, what’s feminized is always devalued.

I feel like this moment brought how ableist the world is into everyone’s minds; it’s just that some of us have already been thinking about it or experiencing it for a while. It’s always shocking to me how little analysis is happening around ableism in “leftist communities,” like you still have people saying the reason Trump is a dangerous president is because he’s mentally unfit or mentally ill. I’m like, I don’t know, y’all, white supremacy last time I checked was not a mental illness.

Rachel: To give him the benefit of the doubt also to say that he wouldn’t choose to do this, that it’s somehow out of his control! No, I agree, and I think that that’s been a big thing to watch happen, especially with the pandemic. I think also with uprising, there’s these sort of really visible gaps in the way that people are able to talk about disability and about illness. I also think everything is happening so fast; it’s been interesting to see some sort of growth around an inability to connect ableism to other issues. Obviously, Black and brown people have said it for a long time, but for the first time seeing white people and even states say, “racism is a public health issue,” police violence is a public health issue, and seeing people talk about the reproductive illnesses and damage caused by tear gas. I guess I’m interested and excited by the way that people are connecting different realities and issues right now in a way that I’ve never quite seen before on this scale. I feel like there’s so many people who aren’t allowing themselves to be boxed in anymore to an idea of like, pick one issue. I guess I’m wondering if there are places where you’re seeing possibility or it looks like there might be space to change, grow into something we haven’t seen before.

Johanna: I think that how we are bound to each other, in terms of social obligation and ethic, is going to be very foregrounded, particularly in terms of the shift in scale away from an individualized experience of society — which is, you know, devoid of any of these interdependencies or intersectional identities. The “West” historically has only talked about one single individual person and their capacity. Like Manifest Destiny: All you have to do is decide to do whatever you want, and then you can do it. (Which of course only applies to a certain kind of person: white, cis and straight, abled, propertied, man.) What I am hopeful about is this shift in scale, in terms of seeing that the individual as such is a complete myth. All of us are defined and built through our interdependencies, not just with each other, but within systems of ideology and how those become institutionalized within power. So it’s not just, I have chronic pain. It’s what that then does to me as a social, political, economic, racial, gendered being.

One of the things I’ve noticed about COVID-19 is this thing that I call the blast radius of disability — for many people, disability is an inciting event in their lives, and there’s a clear before and after, because of diagnoses or injury or whatever. There are of course many people who don’t have that, who are born into it, so there’s not a before and after in a linear way. But it is often the case that people come through a crucible of illness or injury or something that makes them disabled. The blast radius of disability refers to how that crucible radically changes time and space. Time becomes wildly, radically different than what you had known before, because all of a sudden, it’s something you have to measure and conserve and manage and ration. And space is radically different, especially if you have an illness or an injury that means, say, walking to the bathroom is now a huge effort.

I think that we’re in the blast radius of disability collectively with COVID-19. It’s not just, “Oh, I had COVID-19 and now I’m fine,” right? We’re finding that many people who were infected still have debilitating symptoms months after so-called recovery. Also, being “recovered” from COVID-19 could mean greatly reduced lung capacity, people needing lung transplants — it has a lasting effect, which essentially is a lasting effect in terms of disability.

When it was first starting in March, my dear friend, Constantina Zavitsanos, who’s part of my crip fam, was like, “the world is gonna get a little more crip right now.” I think some of us were hopeful about it, in this way of having seen the experience of becoming crip affect people in a way that I haven’t really seen anything else do. It won’t have a lasting change on everybody, for sure — I think the other thing about the blast radius of disability is that it’s when ableism, internalized ableism, is the strongest. The world’s ableism is really fucking strong right now in a way that’s pretty unbearable. It’s like, why can’t we just give nurses and doctors the equipment they need to do their jobs! By May I was getting really cranky and grouchy that people were still asking me to talk about, like, “why care is important.”

Rachel: [laughter] Yeah, like, I’m not sure what else I can tell you.

Johanna: I also got really pissed off at the art world thinking “symbolically” about care. I got invited to exhibitions or events that were “on the theme of care,” and I’d be like, cool, okay, so that means you’re going to have sign language interpretation and live captioning and so on? This is something I’ve discovered in the years I’ve been writing about illness and disability is maybe the age-old division between theory and practice. And maybe that’s also what’s getting reckoned with right now, on a really big scale — okay, we can say America is the best country in the world but like, what about what’s actually happening there?

Rachel: I’m thinking about what your friend said about the possibilities for growth — do you feel like there is any space for possibility in terms of shifting our paradigm of care in a material way? Is there anywhere that we can go with that? What would it look like for that to be different after this or, you know, in 1000 years or whatever it takes?

Johanna: Um —

[Rachel’s cat meows]

Oh, that’s the answer! That’s the answer right there! Yeah.

Rachel: I think what you told me when we talked earlier was that there’s maybe a moment coming when we’re really aware of how we’re bound together but in a way that doesn’t feel good for us. I was really interested in that, because I think so many of the experiences that are really crucial, that we really need, generally don’t feel good.

Johanna: Yes, I would want to suggest that we shift how we value these things. For example, one of the things that really pissed me off after Trump was elected was all of these white liberals going around saying that now they didn’t have hope, so they couldn’t do anything. And I was like, “How privileged are you to first require hope to do anything? Like, wouldn’t it be nice if I had hope, and then I could act?” There have been so many communities — Indigenous, poor, nonwhite, colonized people throughout history — who have lived through absolutely devastating apocalypses where they could not have had any kind of hope. And yet there’s a resilience and a survival, you know, that thrives despite that, in a way that may be inexplicable to somebody who’s only ever had their political actions be defined by hope or possibility or whatever.

I guess my answer is that it’s probably not gonna feel good — to be part of society. And maybe that’s the point. I think that this period is going to demand that we really look at how we are bound together, in this thing called society together, and how that’s probably going to feel bad for many of us.

My favorite word of the moment is “consociation,” which is a zoology term for forms of cooperation, but in a non-zoological context it means cooperative relationships that are antagonistic, but that work together because of this friction. That’s the thing that I’m getting curious about, if we’re going to go through this and still be like kids who demand that it all feel better, or feel good. Or if we’re going to be like, “hey, maybe it doesn’t feel good. And that’s actually very important to be with.”

One of the things about activism that I get really nervous about is this utopia thing, or the idea that it ought to be “successful.” I don’t think society is going to feel very good in the next few years, but I don’t think that’s somehow not worth something, you know?

Rachel: Yeah — I’m thinking a lot about how obviously a lot of people in my life in the US are grappling with abolition for the first time. One thing that I’m seeing a lot of people try to work out, which is fine and good, is, you know, what are alternatives? What could justice look like if I don’t want punishment, I don’t want prison? And I think what I’m seeing happen is that for a lot of people and the reason they’re so sort of stuck is because they think the only alternative or what they assume is being sort of suggested and put forward by abolitionists is a sort of utopic friend vision, like, “oh, the person who broke into your home or the person who raped you, you have to be friends with them now, you have to hug.” And they’re like, well, I can never do that. So I don’t see how this is possible. I think it’s interesting to have conversations around like, Well, no, it’s not that the only solution and what we’re demanding of you is that you feel good about this. You don’t have to feel good about your abuse, you don’t have to feel good about your sexual assault. You don’t have to be friends. You don’t have to forgive someone. But is there a different way of looking at this that’s not this sort of Precious Moments friendship narrative, but also isn’t torture in prison? Is there some kind of justice that doesn’t feel good, but is good?

Johanna: Yeah, and also — one of my favorite kind of boo-yah moments to do in any political theory discussion is to say, “okay, maybe the thing that we need to do, if we’re talking about communities, is define what community is.” People really love it, they get excited when you start to say “us versus them” as the way to talk about community, because it is clear and simple. So my favorite boo-yah thing to say is, you know, “us versus them” is how politics are defined by Carl Schmitt, who was the official philosopher of the Nazi Party. The us-versus-them thing is one of the tenets of carceral logic. This person who did a crime cannot be part of “us,” they have to be part of the “them.” I think carceral logic creeps into activism all the time. It’s this idea that one can do wrong or one can do right. And if you do wrong then we’re going to banish you from the “us.”

A friend said once that they don’t want to leave anyone behind because that person used the wrong word. I think about that all the time, because one of the things that can happen, if you do activism for a long time, is that you can get frustrated with people who are new to the ideas after you’ve been doing it and talking about it or trying to work toward it for years. This is also going to be something that we’re all gonna have to manage in the next few years.

I just read this fabulous biography called Square Haunting by Francesca Wade, which is about five different white women who all happen to live on the same street in London during a 30-year period. Virginia Woolf, H.D., Jane Harrison, Eileen Power, and Dorothy Sayers.

I just finished it last night and the thing I kept thinking about was how they’re living in this area during either First World War or the Second World War, and the stuff they’re talking about, the stuff they’re dealing with, the meetings they’re organizing, the community groups they’re working in — like Virginia Woolf is going to the local chapter for the suffragists movement — this work has been going on forever. And it will continue to go on. This book was just about these five women who lived in the same neighborhood — think about all of the people who’ve been organizing against oppression around the world forever. The first time you come to political, insurrectionary movements, it feels really amazing. It’s kind of like a high. And then, you know, the next day and then the next day comes, and then yeah, you’ve got to start the Google doc, and only four people came to the last meeting, and the website broke, so we have to fix that. This is where the materiality and daily practice of activism comes in — it’s a lifelong commitment, these problems are not just gonna be fixed from one day to the next. I guess I’m just curious about the long-term effect these last few months are going to have? Especially on the people new to activism?

Rachel: I like the way you talk about activism as practice, almost in the same way as a meditation practice or artistic practice.

Johanna: Yes, absolutely. There’s an aspect of ritual, too.

Rachel: I think that the paradigm of understanding that for so many people is informational, like you’re a better activist based on what knowledge you have and how much of it you have. And I don’t like that! I like thinking about it as sort of as a practice and a set of skills. I used to teach writing and writing is hard to teach because it’s a process. It’s not a skill, and the only way to learn processes is to practice them. And I think it’s something where you have to practice, which is hard and frustrating and sometimes dangerous.

Johanna: Yeah, some people don’t like to do that. In my natal chart, I have everything in the sixth house and the 12th house, which are the crip houses in astrology. The sixth house is the house of labor, work, ritual, and practice. It’s also the house of nurses and nuns, and the house of health. Astrology is really binary, so whatever is the opposite is its sister or twin. The opposite house of the sixth is the 12th: the house of illness, isolation, suffering, slavery, prisons, sleep, beasts of burden, witches, privacy, mysticism, sanctuary, and nothingness. I live on this axis. And so I’ve noticed that among my community and in my day-job, I try to be gentle about my activism. If somebody is brand new to this thing and they use the wrong language and they don’t know the right words, I try to be okay with that; forgiving, maybe. I sound so religious when I talk about it! “Forgiveness, practice, devotion.” [Laughter]

I have a memory that haunts me about this. I was giving a talk once and my interlocutor used the word “crippling” to describe anxiety. And I was like [gasps] but didn’t say anything specific about it in the moment. I felt very uncomfortable but I just felt that internally. Afterward the video got put on the internet and I was like, we have to put a content warning that this word is used, you know, trigger warning, and we had a discussion around it, which was really valuable for both of us. Then, somebody at a later Q&A for a different talk, asked me a question, “I watched a video with you where someone said the word crippling and you seemed okay with it. Can you account for yourself?” So I was being asked to be accountable for how I didn’t do the right, like, policing technique, or something. Or that it was my individual fault that this happened. The answer I gave — I think about it all the time, like, did I give the right answer or the wrong answer, according to these standards? What’s the right way? — I said something like, “I think it’s useful if you’re the person who would bear the brunt of this word to develop some sort of promiscuity to it.” For me it’s similar to where the move of reclaiming the term “queer” comes from. This used to be the fucking worst slur that you could call a gay person. And now it’s a term of pride and empowerment for the queer community. I think that’s the same move of reclaiming the word, the identity, of “crip.” I guess what I mean is to think about how language and these practices change, too; it’s this doing that has to be done every day, this lifelong work. Today we could decide that we as a community like this word, and that this word is okay to use, but that could change in a couple of years. I think that being open to that, as an activist, is really, really important. What’s acceptable right now will change, and vice versa. I think if you move toward conservation and tradition, then you move toward conservatism.

Rachel: Which is also kind of tied to individualism in some ways, right? I think a lot about people for whom activism or a certain set of ideology that they perform activism around is so tied to their identity. And of course, then it would be threatening if that ideology shifts or if it updates or changes because then what does that mean about who you are?

Johanna: Exactly. Maybe it’s because I have so many planets in the house of annihilation that I’m like, “But you know we don’t have a self at all?”

Rachel: [laughing] Like, was that just really easy for you to take on? You’re just sort of like, “Oh, yeah, that seems intuitive. There’s no immutable self.”

Johanna: I mean, this is the thing too, this is maybe why I’m joking that I’m kind of religious about it, but I’m like, “Listen, we’re just in the great howl of the Void over here. We’re just trying to do what we can!” [shrugs]

Rachel: When I talked to you last, and we were talking about what might come up in this conversation you were like “well, one thing I’ve really been thinking about is doom?”

Johanna: Oh yeah, I’m pro-doom. [laughs]

Rachel: Yeah, very pro doom. And you were also like, “I’m just thinking about the end of the world but, you know, I’m not really convinced it’s a bad thing. Like I’m feeling really open to it.”

Johanna: I mean, I’m a goth, so that can also explain it.

Rachel: You’ve mentioned that 2021 is a tough year astrologically and that you’re feeling kind of pro doom in general, like, what do you —

Johanna: Well, America’s gonna end in 2024, astrologically. Sorry, what’s the question?

Rachel: I was just curious about sort of like what you’re looking at as far as doom and the end of the world right now. — how you see that happening, what that looks like for you, how you feel about it.

Johanna: What does doom look like for me? Well, you know, it’s funny, I’ve been working with this herbalist for several years — my health has never been better, I want to give a shout-out to this amazing person Emiliano Lemus! Anyway, I started working with them shortly after my mother died, and I was saying to them that the void was feeling unbearable for me at the time, that it was just this huge maw that I was staring into it. It was just there always and I couldn’t see anything else. And Emiliano was like, “Well, you know, the cool thing about spirituality is you get to choose what you believe.”

And I was like, um, no. You do not get to choose. This void thing that is everywhere — it’s not like I chose to be into that.

Rachel: [Laughter] Like, if I could pick, I would have come up with something different!

Johanna: Right! Like if I could choose, don’t you think I would prefer something not nearly as terrifying? So, I guess my feeling is I’m doing my best to cope with the doom that just seems inevitable.

To me, there’s something really campy about doom that I love. The thing about being a goth is the exaggeration and campiness. It’s about excess. That’s what the Gothic has historically been about, whether it’s a hysterical woman in a white nightgown running through a mansion, or you’re at the Bauhaus concert saying your heart is cold and gray. To me, it’s a luxurious abundance.

This is maybe related to care. I’m very against this give-take binary in care because it never fucking works like that. And I also like to reframe care as not being this scarcity or this precarious place. I like thinking of it more as the luxury of our needs. Needs and dependencies, interdependencies, have historically been seen as deficits. Like, oh, if I give my time to you to take care of you, I lose those hours, or I lose that labor, and you owe me now. It’s a scarcity arrangement. But for anyone who has been lucky enough to be part of a crip family and experience mutual aid and communal care, it’s fucking abundant and wealthy and luxurious. We’re all just helping each other and supporting each other’s glorious needs and lives and bodies. It’s like, Oh, you need a ramp, we’ll get you a ramp! Not in a way of like, ugh, this bitch needs a ramp, how are we going to afford that? It’s not like that when you’re in an actual community of care. It feels abundant; care can just happen. It doesn’t cost you or drain you. It’s beautiful and intimate and there’s so much of it. Everyone is talking right now about how much COVID is going to cost, the cost of care, the poor economy. To me, it’s a mistake to think of care as being a deficit, or a thing of scarcity.

So maybe doom for me is also like that; I don’t necessarily think of the doom as being — I mean, it’s scary, but it’s kind of also hilarious. It’s scary in the way that if you’re watching a horror movie you laugh. It just reveals the cosmic absurdity of this whole endeavor. Like we are humans, just because that’s what happened in evolutionary biology? It’s crazy. That after millions of years of life managing to survive, now we have like two eyes, and we’re putting makeup on their lids? — the whole thing is absurd!

Rachel: It reminds me of the more colloquial interpretation of the 10 of swords. Which I guess is more traditionally kind of like, oh, the worst of times, this is unbearable, how can you go on. And then I think for me, the association I’ve come to have is like, Oh my God, really bitch? This is so dramatic. Ten swords? You’re lying down, you can’t get up? But in kind of a compassionate, affectionate way.

Johanna: [Laughter] I love that. The Tower card completely changed for me a couple of years ago when I was giving a reading to a friend of mine, Asher Hartman. He’s a theatre director and playwright. I pulled the Tower for him. It came out as one of the main cards, and he said earnestly, “Oh, good.” I was like, “Are you serious?” And he’s like, “yeah, if I’m making any work, I want to get the Tower because that shows me that I’m breaking ground in myself.”

I read my own tarot every new moon, and in the spread I use, one of the positions is “your special secret skill,” like a resilience/stamina/resource card. And I get the Tower in that position more than any other card! So I’ve tried to see it as a special resource that I have, the ability to just sit in the Tower and let it all come crashing down.

The deck I use is based on the Marseille deck, and the idea of the swords in the Marseille deck if I understand correctly is kind of about emptying out the ego. By the time you get to the nine and the 10, you should be in a selfless space where the ego has been released and you don’t have this attachment to it anymore. It’s kind of like an enlightenment space. Just generally I think if you are really holding fast to the idea that you are an autonomous self-actualizing individual, you’re fucked.

One of my favorite things that Fred Moten taught me when I was doing a fellowship with him — he was my mentor when I was writing “Sick Woman Theory” and the essay after it, “In Defense of De-Persons” — he was like, “listen, the word privilege and the word private have the same root, privus, which in Latin just means individual. So one’s privilege is just the extent to which you have been allowed to be an individual.” This is why white people have so much of it, because they’re just out there thinking that they don’t have race. They don’t see race, race doesn’t affect them, they’re universal. Whereas like, you know, someone who doesn’t have that never gets to be an individual, they’re first a member of whatever race they are before they are a person. This is to me an interesting measure of how we understand ourselves. I think evacuating the idea of the individual is very, very helpful spiritually and politically.

Rachel: It’s good to have a goal.

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Originally from Boston, MA, Rachel now lives in the Midwest. Topics dear to her heart include bisexuality, The X-Files and tacos. Her favorite Ciara video is probably "Ride," but if you're only going to watch one, she recommends "Like A Boy." You can follow her on twitter and instagram.

Rachel has written 1142 articles for us.


  1. Wow. WOW. This is one of my favorite things I’ve ever read, and I won’t qualify it by saying “my favorite things about X” because it’s about everything, which is kind of the point, isn’t it? Thank you both. This is so generous and legitimately brilliant and I will be thinking about it for a long, long time.

  2. Wow. This is so rich and layered and full of sparks for future explorations. How lucky we are to have access to this piece on Autostraddle, to return to and launch from.

  3. another woooow.. add me to the list of mindblown. thank you, Rachel and Johanna, I will be thinking about these ideas for a long time. the generosity! it makes me think of astrology (something I do not usually do at all) in an entirely different way!
    (and I’ll be giving more to the fundraiser because of this; abundance over binary scarcity!)

  4. This article has so much of value to offer when considering community and our multifarious relationships to everyone on this planet. It reminds me of a wonderful book by the Tibetan Buddhist teacher the Karmapa, called Interconnected, which discusses these themes in terms of view and practice, as Johanna so aptly mentioned.

  5. I love this article. I am especially finding the way you both talked about practice/process and ritual to be helpful.

  6. What an incredible piece. Looking forward to rereading, happy to be contributing to a place that is continuing to expand my perspective!

  7. Love Johanna Hedva and thrilled to see them interviewed here! A collage with a quote from “Sick Woman Theory” my classmate made is my fave piece of art in my life

  8. Wow if this is the new direction of Autostraddle then we are one lucky bunch. I love everything about this

  9. ps this stands on its own, and for anyone who wants more beyond Sick Woman Theory, wanna rec Care Work by Leah Lakshmi Piepsna-Samarasihna

  10. Echoing comments already made, this is a remarkable conversation filled with so much wisdom that I will certainly return to. I can’t wait for more in this series on AS!

  11. So, so beautiful and brilliant – I don’t even have the words to describe how much I loved this and how much it made me think. Like Mon said, I will be thinking about these ideas for a long time! From the bottom of my heart, thank you both <3

Comments are closed.