How to Tell When We Will Die: On Pain, Disability, and Doom

by Johanna Hedva

The long-awaited essay collection from one of the most influential voices in disability activism that detonates a bomb in our collective understanding of care and illness, showing us that sickness is a fact of life.

In the wake of the 2014 Ferguson riots, and sick with a chronic condition that rendered them housebound, Johanna Hedva turned to the page to ask, How do you throw a brick through the window of a bank if you can’t get out of bed? It was not long before the resulting essay, “Sick Woman Theory,” became a seminal work on disability. In reframing illness as not just a biological experience but a social one, Hedva argues that under capitalism—a system that limits our worth to the productivity of our bodies—we must reach for the revolutionary act of caring for ourselves and others.

How to Tell When We Will Die expands upon Hedva’s paradigm-shifting perspective in a series of slyly subversive and razor-sharp essays that range from the theoretical to the personal—from Deborah Levy and Susan Sontag to wrestling, kink, mysticism, death, and the color yellow. Drawing from their experiences with America’s byzantine healthcare system, and considering archetypes they call The Psychotic Woman, The Freak, and The Hag in Charge, Hedva offers a bracing indictment of the politics that exploit sickness—relying on and fueling ableism—to the detriment of us all.

With the insight of Anne Boyer’s The Undying and Leslie Jamison’s The Empathy Exams, and the wit of Samantha Irby, Hedva’s debut collection upends our collective understanding of disability. In their radical reimagining of a world where care and pain are symbiotic, and our bodies are allowed to live free and well, Hedva implores us to remember that illness is neither an inconvenience or inevitability, but an enlivening and elemental part of being alive.

Genres: Nonfiction, Disability, Essays, Memoir, Health, Queer, Audiobook

384 pages, Hardcover

Published September 24, 2024

About the author

Johanna Hedva (yo-haw-nuh head-vuh) is a Korean-American writer, artist, musician, and astrologer, who was raised in Los Angeles by a family of witches, and now lives in LA and Berlin. Hedva’s practice cooks magic, necromancy, and divination together with mystical states of fury and ecstasy. There is always the body — its radical permeability, dependency, and consociation — but the task is how to eclipse it, how to nebulize it, and how to cope when this inevitably fails. Ultimately, Hedva’s work, no matter the genre, is different kinds of writing, whether it’s words on a page, screaming in a room, or dragging a hand through water.

Hedva is the author of the novel On Hell (2018), which was named one of Dennis Cooper’s favorites of 2018. Their next book, Minerva the Miscarriage of the Brain, a collection of poems, essays, and performances that documents a decade of work from 2010-2020, will be published by Sming Sming and Wolfman in September 2020. Their first solo exhibition, God Is an Asphyxiating Black Sauce, is open 20 June - 3 August 2020 at Klosterruine Berlin. Their work has been shown at The Institute of Contemporary Arts in London, Performance Space New York, the LA Architecture and Design Museum, and the Museum of Contemporary Art on the Moon. Hedva has written about the political and mystical capacities of Nine Inch Nails, Sunn O))), and Lightning Bolt; the legacy of Susan Sontag; Ancient Greek tragedies; and the revolutionary potential of illness. Their writing has appeared in Triple Canopy, frieze, The White Review, and is anthologized in Whitechapel: Documents of Contemporary Art. Their essay “Sick Woman Theory,” published in 2016 in Mask, has been translated into six languages, and their practice and activism toward accessibility, as outlined in their Disability Access Rider, has been influential across a wide range of fields.

Reviews

[Meliza · Rating 3 out of 5]

started off real strong, like really really strong, up until the essays that are centered entirely around their sex life came up because once again two universal truths that i know were proven, that being that

1. even other poc are not immune from fetishizing poc and not realizing it and

2. kinky polyamorous millennials are so corny

like i’m sorry i just can’t take any of your sex adventures seriously when you start the book off calling yourself a dyke and then have most of the book be about how you love having sex with men and how your partners all had huge cocks and sucking cock is actually revolutionary like good for you but i really don’t care can we please go back to talking about activism. i really don’t think it’s revolutionary to romanticize you’re obviously mentally ill and addict mother for being abusive to you and your father just cuz it’s “kinda badass” that she wasn’t traditionally feminine or caring. like i’m not a cop so i won’t police if a victim sympathizes with their abuser but the way they talk about the abusive women in their family while never acknowledging the damage they did to anyone else is very telling.

there’s also the way this author talks about mexico, lucha libre, and their entire hookup with “the freak” that made me mad uncomfortable. like at the end of the day none of their disabilities or acknowledgment of racism in society seem to matter because they still went out of their way to emphasize just how BROWN and ETHNIC their hookup partner was and how they assumed he could “kill them” despite this random latino boy being a complete stranger to them and showing no signs of aggression or violent behavior. the entire chapter is just them projecting onto this person whether it be assuming they enjoy doing violent porn to assuming they’d be a trans girl with a hentai addiction if they had internet access like oh my god shut up! and i’m supposed to read this as charming? i find it very weird you assume this brown person you barely know gets into fights at bars when they get too drunk and it reeks of the internalized biases anyone with light skin has in regard to darker skinned people. and they admit they see themselves as white passing so they know they’re close to whiteness and yet never once did they question if this depiction was okay.

people who are really into kink have to bring it into everything it’s so annoying like what do you mean you don’t support a pain free society cuz you like getting fisted by strangers?? also so many of their hookup stories scream bad boundary control and little communication it’s concerning like what do you MEAN you didn’t tell the person fisting you that they hurt you? they’re panicking and you find that hot???!?!

also i just hate whenever anyone makes jokes about being “a woman who would’ve been lobotomized back in the day” because this jokes always come across as disrespectful even when the person making the joke has a point like yeah im sure you would’ve…isnt it nice that we don’t do that anymore…unfortunately it did happen and a lot of the victims were specifically indigenous women and they were sterilized too soooooo yeah! maybe shut up!

the word nuerospicy is so cringe too btw

i’ll give it 3 stars because the parts i enjoyed i really enjoyed its just a shame that so much of this is just the same old kink talk you’d get by accidentally stumbling onto the polyamorous side of instagram.

also i find it really funny that the author is american and americas health care system is, to put it simply, fucked. their answer to this? just move! because we all have the resources to do that! sorry if you can’t leave the country :/

post election edit: i told y’all sucking dick wasn’t revolutionary! yall were so busy getting laid yall forgot to vote!!

[Traci Thomas · Rating 5 out of 5]

Johanna Hedva is a literary force. Their thinking and writing is exactly what I hope to read every single time I open any collection of cultural criticism. They are smart, funny, bold, surprising, and observe the world in ways that would never occur to me (they essay in this book on wrestling is the perfect example). I had so many “ah-ha” moments about ableism while reading this book, but more than that I had so many “ah-ha” moments about what care is and can be. This is a book about possibility. It is also a book about kink and cocks and art and hags. It is a text that I am so happy to have read and I know I will continue to reckon with it and Hedva’s words for a long time to come.

[Nathan Shuherk · Rating 3 out of 5]

Sontag for the tumblr era

[August · Rating 3 out of 5]

To be entirely honest, I did not finish this book, and I have extremely mixed feelings about what I did read. The introduction and first couple of essays, including "Sick Woman Theory," were very engaging, but unfortunately my interest level dropped off pretty sharply after that. As someone with chronic pain, there was a lot in this book I found I could relate to, but ultimately the later essays, although maintaining the mostly academic tone, became more disorganized and I was often left struggling to figure out what, exactly, the author was trying to say. I think the biggest weakness in this book is that the author seems to be trying to be constantly conscious of every social issue, and bring these issues into every discussion, even when it derails or confuses the point. Additionally, while the author certainly has a mastery of the English language, I found the tone to be so academic at times as to render the content practically inaccessible. So, this is a book for anyone with chronic health conditions and/or disabilities, but only if you have the time, patience, or education to decode the messages within.

[Autumn · Rating 3 out of 5]

I found many of the essays resonated with me. Some of the essays are powerful and radical as fuck! I wish I could say that about every essay, or even most of them. I have nothing against essays that are more about the act of depicting and decompressing the crip/disabled/mad life. It deserves to be let out and experienced.

Unfortunately the absence of COVID was very confusing to me, especially when it is mentioned as a source of many new disabled people. I understand if Hedva didn't see it as their particular strength or if some parts were cut, but i found it weird to mention it and then completely drop it from your analysis.

(The next section considers transmisogyny)

I have nothing against kink as a person who is kinky myself. I have no issues with fucking transfeminine people as a trans woman myself. I have nothing against celebrating and enjoying (big or small!) penises that are a part of a person who isn't a man (as someone who does so myself). However, they have made it very clear that their attraction and kink-based desires for transfeminine people are tied to the size of their cocks. I know lots of dudes who feel the same way. It's weird as hell.

There is an important line to draw here. I think Hedva should be allowed to do whatever they want and fuck as many consenting trans femmes as they want. But when you put forth into the world that you like fucking men and trans femmes because of an imagined shared socialization it's very different. Hedva even speaks to the underlying assumptions that go unnoticed by authors. Their assumption that there is such a thing as "male socialization" and that Hedva can then ethically organize their self-understanding of their attraction around it is the most glaring thing about these essays. And to then put that transmisogyny into the world and frame it as radical is, to me, laughable.

I don't think Hedva doesn't see me as a woman, nor do I think Hedva *hates* trans femininity. When you draw a direct essentializing link between your attraction to men and your attraction to trans femmes (especially wrt so-called "male socialization") that starts to smell of the same dehumanizing rot that has overcome the senses of my "allies". It's exactly radical...... maybe radfem?

I wish these essays were free of transmisogyny. They aren't. They contain the same bullshit I have observed in so many people who claim to love trans femininity.

[Jade · Rating 3 out of 5]

i don’t think i’ve ever felt such mixed feeling about a book before.

as someone with multiple chronic illnesses the first few essays really resonated with me.

theeeeen we got into the kink chapters. i by no means am a prude, and i was not uncomfortable with the explicit descriptions of kink HOWEVER from the title of the book and the previous chapters i just was NOT expecting it. it complete took me out of one world and put me into another and i had a hard time understanding why these essays would even be put into the same book?

sometimes overly academic and pedantic, almost felt like an obsessive need to cover every social topic but then very glaringly leaving out the covid 19 pandemic? it felt odd.

also i hate to say it but it had to be knocked down at LEAST a half star for the term “neurospicy”

[mall0rie666]

very VERY sus when disability activists take pains to avoid the existence of COVID. truly insidious work.

[mossreads · Rating 2 out of 5]

The first few essays were really good. The chapters about the dom-sub kink and cocks, not that I am not down to freak, just put me off since I was not looking for that here. As someone who has struggled with chronic ailments and mostly inherited at that, I was looking to have the lonely hospital visits validated. The dull ache that comes with knowing that this won't kill me but be a thorn in the flesh till I die. I wanted more exploration of that. But I respect that this is really a book about Johanna's pain.

[VvTired (Lauren) · Rating 1 out of 5]

This was a tough one to finish.

As a rule I don’t quit books once I’ve started them, but this one dragged and made me so tempted to drop it altogether.

I love books on disability/chronic illness, and there are definitely parts of this book that make decent points about those topics. Unfortunately this book wants to be too many things.

The author clearly doesn’t want to be labeled as “just a disabled writer” but the way they express this comes off incredibly strange. I don’t believe that the author needs to preface everything with a statement of gratitude but damn they have a lot of negative things to say about people who are interested in only their disability centric work. I’m sorry but it’s not a moral failing for people to be interested in some of your writings but not interested in you speaking on kink, hookups, music, etc. This isn’t exclusive to their specific identities but something most people deal with to some capacity. Being someone that people find interesting for a single thing is fairly common, especially if they don’t personally know you. The author seems incredibly bitter about being known for their most famous work and seems to make it everyone’s problem.

The author clearly feels that they are particularly enlightened, and while yes they are on some topics, they also are clearly being arrogant on other topics and unable to see their own flaws.

In conclusion I think there are some somewhat interesting essays here, but as a whole this books is very messy and lacks maturity and depth.

If you’re looking for essays on disability or queerness I’d recommend heaps of other works over this one.

[Shu Wei Chin · Rating 5 out of 5]

March 2025
This took me so long to complete because I loved almost everything Johanna Hedva wrote. My copy of How to Tell When We Will Die is hands down the most annotated book in my entire collection as I keep learning, having my perspective and worldview slightly but significantly shifted with every highlight.

The not-insignificant amount of astrology talk in a non-fiction book might irk some readers, but to me it was just an added bit of sparkle to the overall narration. Other than that, my original impression/review of this book still stand.

October 2024
I am only ~30% in but I already know this will be a 5-star read unless something really dramatic happens, and I am committing to absorbing, digesting, and annotating this, page by page. I just cannot wait that long to start screaming about this book to the world and even if one person sees this and considers picking it up and experiencing it with me, I will rest easy.

This is about how late stage capitalism has failed and is failing groups of people outside of the white supremacist, imperial-capitalist, able-bodied, cis-hetero, patriarchal ideal. Considering the microscopic amount of people ticking all the above boxes, this book is about how late stage capitalism will eventually fail us all. Why are we ignoring efforts to empower marginalised communities? Why are we not embracing diversity? The pain and inconvenience is surely worth it because we will all, one day, become some form of "sick".

This book is about Johanna Hedva's Sick Woman Theory, the Sick Woman being anyone from a "fifty-year-old gay man who was raped as a teenager and has remained silent and shamed, believing that men can't be raped" to "a mentally ill Black woman whose family called the police for help because she was suffering an episode, and who was murdered in police custody." "Woman" is used to represent all the uncared for, the oppressed, the less than.

This book questions everything (including the author's own thoughts), calls out everyone and yet advocates for radical kinship, for empathy.

[madi · Rating 5 out of 5]

my libby hold came through and i thought “great! i can read it without buying it!” and then i finished the first chapter and placed my order immediately because i needed to mark up a physical copy alà unabomber manifesto. this is a book i’ve been waiting for my entire adult life. the author’s UNBELIEVABLE clarity and precision while describing the personal and social experience of illness and pain felt miraculous. there were a few pages in the end especially that felt exact and perfect. i am the hag and i am becoming the hag and i will be the hag, and thank god for that.

*this would be a book i recommend to other disabled people and maybe wouldn’t be a first rec to nondisabled people. there were two chapters on kink (sorry for saying kink) and the politics of sexual desire that i thought were really interesting but would limit the list of people i’m recommending this to. absolutely a product of my own cowardice and not of any shortcoming of the author*

“Illness is not—despite The World telling you it is—only a personal, individual experience of pain, trauma, and limitation. It happens inside your individual body, and yet it is an index of the social body. It’s the collision of a lawless body against a body of laws, your world being crashed into by The World. It produces an embodied experience that undoes who you think you are to such an extent that telling other people how it feels seems impossible, and at the same time, it produces a body that is read and deciphered in terms that are historical, systemic, and political. However, the social vector is usually ignored, so that illness becomes an index of one’s own individual powerlessness rather than being seen as the experience of how we are all enmeshed within systems of power, how we are all interdependent, for better or worse, and how such enmeshment and interdependence shapes consequences and potentials, desires and rights, dreams and deaths, worlds and realities.”

[Maddie · Rating 5 out of 5]

Frick. This was good. Review to come!!

[Nataly Herrera · Rating 3 out of 5]

An interesting read but some essays felt out of place here. I almost had to dnf after reading the word “neurospicy”

[Helen | readwithneleh · Rating 5 out of 5]

HOW TO TELL WHEN WE WILL DIE is one of the best books I’ve read this year. After attending the Hillman Grad Books launch event back in March and hearing the author, Johanna Hedva, speak, I had immediately put their forthcoming book on my mental TBR. I knew it would be an absolute banger just by how they were speaking about their book and life experiences. And I was right.

At first look, one would assume this is another book about disability activism. And it is, but it is also about chronic illness, queer identity, kink, art, and how they all intersect with capitalism, ableism, and our approach and understanding around care. The book begins with the most educational essay for the able-bodied, Sick Woman Theory—one that should be required reading for everyone. In it, they ask the readers to shift our views and expand our empathy to include and center the “Sick Woman” or anyone who has been “denied the privileged existence” of being a “ white, straight, healthy, neurotypical, upper- and middle-class, cis- and able-bodied man who makes his home in a wealthy country, has never not had health insurance, and whose importance to society is recognized everywhere and made explicit by that society; whose importance and care dominates the society, at the expense of everyone else” in both public and private, physical and ideological spaces. In this essay and in others throughout the book, Hedva questions the binary of “sickness” and “wellness”, and how being “sick” is a capitalistic construct built upon the idea that you need to be “well” enough to work to feed the machine that is capitalism. And because of that, to care for each other and yourself is the ultimate anticapitalist protest—to identify and prioritize the parts of us that are in pain, have seen trauma, or have been or are in vulnerable in any way whether it be individually or systematically is an act of rebellion against the idea that being ill or disabled is a problem.

And there I was, confronted with my own ableism. As someone who is physically able-bodied but absolutely believe in accessibility and inclusivity of all, I realized I still unconsciously held this belief that being “sick” was something to apologize for. Even now, as I am navigating my diagnosis with ADHD and what that means for me who had always identified as neurotypical, I find myself apologizing for how my brain works because in the lens of the normative, capitalistic society, I am failing. I need help and I don’t know, or rather, I don’t believe I can ask for support or care. Because to ask for care is to identify that I need protection from the very thing that makes me, me. And, honestly, using myself as an example here makes me feel extremely uncomfortable because the feeling of am I sick/well/neurodivergent/neurotypical enough is so strong.

But, Hedva reminds us that there is no care without pain, that illness in any shape or form is not something to apologize for or a problem to eradicate, and that we all have vulnerabilities now and if not now, we will later. Because, we all will become disabled. It’s an identity that will come to us eventually, so why not make the space for it now?

I know this is a book that I will read over and over again. I’ve already started rereading a couple of the essays and I am discovering new moments, ideas, and feelings. The book is incredibly informative, but also deeply personal. Hedva is unflinchingly honest and candid about their pain and life experiences; and their writing is smart, introspective, and vulnerable.

I truly cannot recommend this book enough. I absolutely fucking loved it.

Thank you to the publisher for the review copy. All opinions are my own.

[Gabriella · Rating 4 out of 5]

I was introduced to this book thanks to the the Queer Death Club, a “network of queer and trans folx in the NC Triangle making space for death, dying, and grief.” According to the web, the Queer Death Club's goal is “to weave a queer deathcare network that makes space for curiosity and openness around death, so we can better care for each other in life and death.” This month will be my first time participating in their book club, but so far, they have a fan in me!!!

How to Tell When We Will Die: On Pain, Disability, and Doom is a powerful contribution to modern conversations about disability, illness, and care. The author, Johanna Hedva, also discusses many other topics that are equally important to their personhood: goth culture, art criticism, kink, wrestling outside of kink, astrology, and Greek mythology. I was thoroughly impressed by Hedva’s range in this collection, and I think I will be returning to many of these essays for years to come. This book is so good that I’ve accepted that it was published by Lena Waithe, one of my most hated lesbians!!!!!!!

We’re all lying about the omnipresence of disability
In true goth fashion, Hedva opens this collection with a gut punch: “In order to live, we tell ourselves stories that do not include illness. Our heroes die on the battlefield, not from chronic pain.” (1) In their initial essays, Hedva interrogates this notion of disability “as the worst conceivable outcome”, something that “lurk[s] on the periphery as a distant possibility that happens only to the unlucky.” (3) These words immediately felt relevant to my recent life experiences.

After witnessing my grandparents live with Parkinson’s, Lupus, and multiple cancers, I think my family has been haunted by a desire to distance ourselves from disability. In the wake of my grandparents’ deaths, my aunt has resurrected her fixation on essential oils and natural healing, fearing that a reliance on prescriptions will lead her to a similar fate as her parents. My father obsessively plans his gym visits, repeatedly pledging that he must keep moving avoid “decaying” as he ages. I find a similar fear creeping into my pastimes, when I finish a game of Sudoku and send a silent prayer to the universe that this act will lower my risk of dementia (a condition both of my grandmothers had.) During my grandparents’ funerals, I was fresh off an ACL tear and subsequent reconstruction surgery, causing me to rely on mobility aids including knee braces, crutches, and occasionally a hand from a relative. My body’s visible failure shamed me, even when I knew people were happy to help me, even when I knew it was “problematic” to feel this way. Months later, the course of my ACL recovery is still plagued by an underlying fear that years “before my time”, I will end up like the people I loved—unable to move around without the help of others. So here I am: with an immoral revulsion to being dependent on others for daily care, and an exhausting, foolish hope that I can somehow outmaneuver conditions old as time itself. In How to Tell When We Will Die, Johanna Hedva looked my fear of disability straight in the eye, and began to dissect it.

Anyone who loves an inquisitive writer will find Hedva delightful. Their essays are overflowing with questions, including about just why we’ve been sold this lie that disability is a rarity, when in fact it’s one of the most common experiences humans have. They ask readers to think about why our modern society is so dishonest about disability, and how this dishonesty might contribute to ableism’s prevalence in our world. They ask us why we have become so comfortable with denying whole parts of ourselves just because they are or may become ill. In essays like “Soft Blues”, they ask who these sorts of lies are designed to protect, and who is sacrificed to keep those people in power. While these probing reflections are hard for our ideal abled selves to stomach, they are deeply compassionate to the disabled selves we are hiding away. Hedva is intent on guiding their readers to a deeper understanding of the lie our world rests upon, and the lies we help perpetuate with internalized ableism.

One particularly eye-opening passage for me was when they connected the myth of ableism to the myth of bootstrapping. While I understand that on economic terms, no one is “self made”, I somehow held onto a lie that some bodies can exist in the world without care from others. In the essay “Why It’s Taking So Long”, Hedva reveals the connection between these two myths:

“Capitalism and its attendant ideologies have used powerful magic to make us believe…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…
…The magic trick capitalism has managed to pull off is not only to make us believe that we do not need, but that we should not—and disability access is a long needle piercing the bubble of this magic trick. Without this magic, without this myth, we are left with the truth: The body is never going to be solvent; it’s always going to need too much, be too expensive, not do everything we want it to, hurt more than we can bear, and then deteriorate until it can no longer move.” (301-303)

In passages like these, it becomes soberingly clear how much we sacrifice to keep these myths alive. Despite what we are forced to believe, our bodies cannot be optimized into self-sufficiency. We were never meant to do life alone, but unfortunately, so many of us are taught we can with the right regimen. I think of one of Paul’s many unhelpful takes: “I strike a blow to my body and make it my slave so that after I have preached to others, I myself will not be disqualified for the prize.” (1 Corinthians 9:27, NIV). How many times, throughout my upbringing, did I hear that verse and not realize what it was reinforcing in my psyche? How many times, I wonder, will I need to hear the competing truth before it sinks in?

Coming to terms with disability and doom could help us with everything
Hedva’s competing truth is this: ableism doesn’t keep us safe, but it does keep us in denial—and that denial serves power. The powers that be would have us lie about the prominence and eventuality of disability, so that we can keep going to work, keep making our bodies our slaves, and keep thinking we aren’t responsible to each other. The essay “In Defense of De-Persons” helps show the connection between ableism and neoliberalism:

“…neoliberalism can reduce everything, including the decision to survive, down to personal choice, a matter of willpower, and a problem the market can solve. In neoliberalism, “wellness” is a prevarication; it usually stands in for “life,” but life in terms of wealth, race, gender, power, and, primarily, ability. Wellness in this context is paradoxically both an innate moral virtue and an individual’s own responsibility to maintain.” (77)

In other words, we must blame ourselves, and we must stifle our body’s natural needs for help, because the only other option is to blame society. Of course, the myth of the fully independent individual is just that, a myth!! We are propped up by others in soooo many unseen ways, and perhaps it’s time to start seeing them. Hedva models the brave act of staring down our doom, and then deciding to keep moving forward. This process can be full of missteps, as they show in the essay “Soft Until It Gets Hard.” However, I was encouraged by that essay’s demonstration of how many chances we have to try again: we can keep on interrogating our ableism, supporting access needs, and fighting to care for one another in the ways we can. Hedva argues that we can deeply struggle with people, even fail them, and still find a way to support them. The finality we’ve been taught to associate with disability, and with care, is another lie—there are so many opportunities to try a different way of being. It reminds me of something my girlfriend and I have started saying to each other: life is short, but it’s also long. The average person will have tens of thousands of days on this planet, and that is ample time to form a braver relationship to our fear of disability.

If we do try to come to terms with these realities, one benefit is that we could experience deeper connections to the people in our lives. So much of this collection is influenced by Hedva’s mother, who passed in 2018. Early on, they mention wanting to write this book to figure out another path that could’ve saved their mom, who was dealing with addiction and other illnesses. Just as this book helped them unearth more compassion for an abusive parent, their work helped me understand a bit more about a relative I struggle with a lot. “Soft Blues”’ exploration of mania, artistry, and how these things are often gendered really struck me, and I will be thinking about them for a long time to come.

Many helpful redefinitions
To write a book like this, it requires a lot of correction to things we think we know, because many of these things have helped prop up the myths that lead to ableism. I especially appreciated Hedva’s efforts to redefine care, as a practice of attention and intention, and to expand it beyond the typical acts we think of. Part of their redefinition requires us rescuing care from the logics of debt, a point that immediately made my ears perk up. Ever since reading the Can’t Pay, Won’t Pay: The Case for Economic Disobedience and Debt Abolition, I have been really fixated on how debt plays a punitive function in our society. It keeps people chained in line, and it causes them to go against their heart’s desires. It makes perfect sense, then, that our society would’ve used debt to limit the potential of care. Hedva’s thoughts on this are illuminating:

“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…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…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. If we should have learned anything from the COVID pandemic, it’s that, for better and most certainly for worse, we’re in this together.” (304)

Reflections like this make me really hopeful about what might be possible when we refuse to see care on these terms. How to Tell When We Will Die has other helpful redefinitions, including of hubris, ambition, and access needs. I’m still working through my feelings about these corrections, and so I think book club will be a helpful place to grapple with others.

Final thoughts (w/ some criticisms)
I would highly recommend this book to most readers who can handle the content (the main TWs include mental and physical illness, emotional and physical abuse, addiction, and sexual content.) Johanna Hedva is a curious, demanding author who has taught me much about the way our world functions. Their haunting reflections on their maternal relationship and grief journey will touch even the most stoic of readers.

There are some low points: Hedva has a strange vendetta against white women that seems to stem from being white-passing and cis-assumed. They justify their outlandish, egotistical behavior by claiming that rich white men are allowed to be this way. (Like is that really the goal of our actions?) They’re also a bit grating in their sporadic use of AAVE, and their virtue signaling invocations of Hartman, Moten, etc. I didn’t love the middle portion of this collection, as the essays on other artists were not as deeply tied to the core topics at hand. During the Sontag essay, I felt like Hedva just wanted to write about this other topic, and then was working in reverse to make it align with the theme. We understand from the penultimate essay, “Why It’s Taking So Long”, that they hate being reduced to a single topic (disability). So, I feel understanding of the fact that they might’ve wanted to go elsewhere—those pieces just weren’t as moving to me.

Finally, I did feel like for an otherwise open book, Hedva was uncharacteristically evasive about their current lifestyle. They make fleeting mentions of a spouse who presumably sponsored their German residence, and his brother’s work as an oil and gas executive. I suspect—but cannot confirm—that a Hedva’s recent circumstances have been made possible by their spouse’s privileged background. Again, nothing wrong with that, but it just seemed like a very curious topic to withhold, and dare I say something that felt against the spirit of this collection. It’s great to preach about care being something we all rely on to continue living, but then why not be open about the people or systems that enable you to access the care you currently do?!? It just seemed like the part of the book that didn’t fit into their struggling artist narrative was being redacted—not just because it was a more recent reality, but also because it wasn’t “goth” enough to fit the book.

So, that’s all! Johanna Hedva has taught me that death is fast, but doom is slow. They’ve helped remind me that life is short, but life can be long. I am glad for their work, as this is a book that can help us through it all.

[Andre J · Rating 4 out of 5]

2/19/2025

I for the most part enjoyed this book. I kind of went in with no expectations, captivated by the title of the book. I know it was recommended to me somewhere either in an article or YouTube video but I can’t remember where.

At times this read like a memoir with a focus on how disability has shaped Hedva’s life. Even though these were essays, I did enjoy how to me, this read like a memoir. I think it made it more digestible reading it with that mindset. Even tho at times kooky, it was nice to get some insight into Hedva’s life beyond disability. They definitely dug deep into their sex life too and how their fascination for certain kinks/type of people intersects with their understanding of themselves in relation to their disability. I’m not well versed in gender and sexual politics so can’t speak much on the criticism regarding this persons preference and self identification in regards to their sexuality and gender, but I can see how in the parts about “the freak”, it can seem a little fetishizing and also weird. At most that part was weird to me. I just read it like “ok…. Go off iguess”. At the very least, I can say that this book didn’t fail to keep my attention.

One part of the book that stuck out to me the most was in Hedva’s discussion on Susan Sontag as a cultural critique on disability/sexuality/womanhood. Sontag is best known for her essay “Illness as a Metaphor” discussing how illness is portrayed and respresented in society, particularly through language and metaphor. What was fascinating and kind of depressing in Hedva”s analysis about Sontag was how Sontag never associated herself with illness, despite having written “Illness…” while battling cancer herself (also how Sontag removed herself from conversations of queerness, despite writing about it and being queer herself - but that’s another can of worms). Hedva’ brings to the surface the ableist idea reinforced by a capitalistic society; that we’re not “trying” hard enough, or we’re just being lazy. that there is a possibility of overcoming illness if just “will ourselves” out of it/if we believe it hard enough, we can overcome it. And that’s something, Hedva concludes, that a lot of disabled people have to hold onto; this ableist belief that a disability can go away and that if doesn’t, that some type of moral failing has occurred.


“Some of the most destabilizing encounters I've had with ableism have been seeing it in other disabled people. They hold on to a fantasy of healing and then hate themselves when it fails to arrive for them. I wonder what healing means to her, how she envisions it. Does she think her degenerative autoimmune disease, which she's had her entire life, will just vanish? That her broken hand will suddenly become lithe and beautiful? Does she think it is only a matter of loving herself enough?”


While at times convoluted by long streams of consciousness and unnecessary BIG words, I think Hedva still successfully got their points across.

1. Most if not all humans will have to confront disability sooner or later in their life. Disability comes for all of us.

2. Like many goals of activism, disability justice would not only benefit disabled people, but also everyone else who will come to know disability eventually.

3. Disability justice and fighting ableism is an issue that is perpetuated by capitalism, white supremacy, eugenics, racism. To truly dismantle it would to be to address these issues that are deeply rooted in the fabric of our life.


“Sick Woman Theory claims that it is the world itself that is making and keeping us sick.”


“Sick Woman Theory argues that all our bodies and minds carry the historical trauma of oppression, and that, although they manifest in each of us differently, these differences ought not to be erased or flattened into any totalizing condition. Sick Woman Theory claims that it is the world itself that is making and keeping us sick.”


I am of the belief that people would be less scared of becoming disabled if the conditions of our society were better at accommodating disability as a natural progression in life. But in order to do this, we would need to deconstruct ableism and how it has inflicted our society.

Disability literature is super important! While this wasn’t my favorite for this genre, I appreciated Hedva’s perspective, and bits of wisdom scattered throughout. as another reviewer said, you kinda take what you like and leave the rest.


“I want accessibility to be seen as the political movement it is, advocating for the rights of a group that hardly has any and needs them the most. I want ableism understood as the most integral component of all oppressive ideologies-capitalism, white supremacy, sexism and misogyny, homo- and transphobia, classism, imperial- and settler-colonialism-that these all feed off each other, that they need each other to work, and what they need most of all is ableism, because it's the ideology that most sweepingly invents the false hierarchy of that which can be deemed normal, which is to say, who can be deemed not normal.”

I need a less brainy book next time

[Tara · Rating 3 out of 5]

Th first half of this book and the second half are two different books. Rtc

I have mixed feelings about this book, it started out really great with some powerful essays where I was highlighting so much. The first part of the book feels like it matches the title of this book and what I expected going in, but it starts to stray much more into memoir. I thought these essays were interesting, but many tended to be meandering and I felt like they strayed further from what I expected based on the title of this book. These essays still delved into the themes, but much less so than the first essays and I found myself highlighting less and less as the book went on. I did still find these essays interesting, I like a long form essay and I appreciated hearing the author's opinions, even if I didn't always agree (I think this would be an interesting book club pick to discuss). I also really liked that there was a theme throughout of how care is hard and messy- how do we push ourselves to provide care even to people who we find hard to love or hard to be around? I just wanted more from a lot of these essays.
The last essay starts with a date of March 2020, so I thought "finally we are going to talk about covid" as it had scarcely been mentioned throughout the book, and I was disappointed to learn that this essay was also not about covid. Honestly just extremely disappointing to not dedicate an essay or much time at all to this ongoing mass disabling event that is still ongoing in a book about disability, making me finish this book on a real sour note.

[Kelly]

DNF @ 60%. I don’t “get” this author. Outside of whether or not I agree with them, I just plain don’t *understand* them, often. There were SO many times I finished a page/chapter/section and thought, “I’m a literate person. I know all these words. I have a baseline understanding of this topic. But I have no idea what this author just said.” A lot of rambling, I guess? And awkward phrasing. Can only do that for so long. I tried print and audiobook and felt the same with both. There were sentences here and there that were gems but overall it suffered from a lack of cohesion.

The first few essays were strong, but it all just got more and more muddled as it went on. The seemingly gratuitous sex essays in the middle is where it really got derailed for me. The connection to the rest of the book felt tenuous at best. It felt like that was in there just for shock value.

[Jayme Leadmon · Rating 3 out of 5]

Great first half followed by a collection of essays that challenge the way that we look at disability. There was, however, a bit too much millennial cringe for my liking. The fastest way to lose me is trying and failing to work shock value. We get it – you just learned the word cock. Calm down. That is a nitpick, though, as the conversation around disability and resistance to capitalism still makes this a worthwhile read.

[Emma Yergin · Rating 3 out of 5]

Some of the essays were a lot more powerful, organized, and relatable than others. I liked the message and the education it provided, especially on disability as a feminist issue, but it was packed a little too full for me.

[Rio Sharkey · Rating 1 out of 5]

DNF. I really expected and wanted to love this book based on the title and description but unfortunately i find it very poorly written and underdeveloped. I think the author has an interesting perspective but fails to develop any of their points, for the reader and for themselves. They jump around so much and repeat themselves and occasionally drop a line that sounds like a point and piques your interest but then just moves on without explaining or arguing that point. When you can sift out a thesis to the chapter/section, it’s often kind of… first thought?

For example, the Sick Woman Theory, what this author is most famous for. I don’t see how lumping every marginalized person into one category (arbitrarily named “woman” because “being a woman can still be radical in the 21st century”???? i find this line meaningless at best but also kind of patronizing and sexist actually?) is useful at all? And I don’t think the author really gives any reasons that it is? They just kind of present the idea and give 100 examples. Not to mention potentially offensive to many (i mentioned this book to a disabled trans man friend of mine and he had heard of the theory and absolutely despises it). I think it risks a bit of a feminism vs womanism type reaction as well by flattening all experiences under the label “woman” and thereby ignoring the diverse experiences at different intersections of marginalization. Hedva even critiques this aspect themselves in one of the following chapters (Get Well Soon, I believe). Which really makes me wonder, if you agree with this critique, why not revise your theory before publishing? Or at least include the critique in the relevant chapter but explain why it’s still helpful? I don’t know. I don’t think this theory is radical or useful at all. Perhaps if the author explained why they think this framework is useful I’d feel differently, but they didn’t.

I felt pretty similarly about all the chapters I read, where the lack of organization and actual development of ideas (your basic thesis, evidence, evidence, why it’s important, etc) just left me with nothing but some vague interest in the author’s story and a desire to seek out the work of other disability scholars and activists.

I did actually like the chapter Notes on Activism (aka Notes on Failure). I thought the thesis that activism will always fail and fall short of defeating the enemy (ex capitalism) but is still important and necessary was useful and inspiring. Sometimes it feels like because you can’t fix everything, you can’t do anything, but that’s not true. We need an image of activism that does what it can and keeps trying in the face of impossible odds. 12 minutes on audiobook was the right amount of time to express this simple but effective point without jumping around so much as in the other chapters.

Overall, I would not recommend this book and do not want to spend another 10 hours with it to finish it, especially after reading other reviews that say it really goes off the rails after the first few chapters when the first chapters were already irritatingly disorganized to me. I think this author’s perspective could be very impactful if these essays were held to a higher standard of development and organization and workshopped a bit more. Alternatively, I’d be interested in this author’s memoir. But as it is… :/

[Tessa · Rating 4 out of 5]

A really excellent read. Probably not required reading for everybody, but definitely required reading for me.

I haven't come across anything else that explains so well how it feels to become disabled and have to constantly deal with all of its garbage baggage. There was also a really fantastic essay on Susan Sontag, with a fab discussion of women artists' biographies/legacies - it felt like a conversation I've been waiting and waiting to have with someone who understood. A lot of this book felt like that for me, like a conversation with someone who already *understands*, like spotting another punk ass post-emo kid in a random establishment and being able to just start a conversation and vibe from go. Like not a soulmate situation but the happy surprise of being able to fist bump and relax, like yeah, we get it, we've lived in the same homes. Hedva also brought up lots of ideas that I hadn't thought about before and their book did really make me think, so I appreciate it for that.

On the negative side, some of their arguments about reframing perspectives or capitalism or whatnot felt a bit more poetic and/or philosophical than rigorously persuasive, and they made references to concepts or arguments that I'm not personally familiar with so I didn't really understand them. I also didn't agree with some of their arguments, and wasn't a huge fan of how they emphasized their partners' dick sizes all the time. Idk, in the end, these weren't deal breakers for me - like I spotted another queer disabled guy in the grocery store, they're probably gonna have opinions I don't agree with and they're gonna talk about their kinks a bit too much, but I'm still happy to listen to whatever they have to say and vibe.

[Lanelle · Rating 5 out of 5]

In ‘How to Tell When We Will Die’, Johanna Hedva delves into what it means to experience life at the intersection of disability, madness, and a need for community under the ableism and capitalism that rule our world.

Based solely on the small section of the book description I had read, I already had high expectations for this book, and my goodness, were they exceeded. I am in awe of the depth and breadth that Johanna covers within these pages. There is not a single messy, mad, or divisive topic that is shied away from as they explore the reality of living authentically in a body and mind that the world is determined to make small.

I have such respect and gratitude for the unapologetic and raw way in which Hedva shares their personal experiences. As a disabled and neurodivergent person myself, I took a lot from this collection of essays. I am excited to add this book to my badass disability justice toolkit.

I am waiting with eager anticipation for my pre-order to arrive so I can tab and annotate the shit out of this book. I am so grateful to Johanna for sharing these vulnerable and frankly revolutionary essays with us. I will be recommending this book widely for years to come.

Thank you to NetGalley and Zando for the e-ARC. All opinions are my own.

[Molly McDermott · Rating 3 out of 5]

I’m having an incredibly difficult time deciphering my feelings about this book because so much happened. On one hand, the introduction & first two essays were probably the best writings on chronic illness I’ve ever read. I was a highlighting fiend. I felt seen, understood, & cared for. On the other hand, the rest of this book was an absolutely insane ride with pretty graphic depictions of kink (which I was not expecting nor prepared for) alongside complicated, almost-academic writing that was difficult to follow & certainly inaccessible to the average reader (myself included). I read another review that said that this book is definitely not an introduction to disability literature & I agree 100%. I’ll totally come back to the first ~50 pages of this book because there was magic there but the rest of it was not for me

[Carolyn · Rating 2 out of 5]

I liked a few essays in this week but hated others. I found Sick Woman Theory very interesting as well as Hedva's other writing on disability. I loved Notes on Activism. I was less interested in rambling essays about their life, and absolutely hated the ones that dealt with their sex life, particularly Can I Hit You? They seem to think that their queerness and proclivity for kink make them special or somehow understand life on a different plane, but I thought many of the things she describes are just irresponsible and sad. Like rough sex practices with someone whose language you don't speak. Or not being able to talk to a partner when they inadvertently hurt you (even when they do speak your language). Consent is missing here and just turned me off.

[Lauren Oertel · Rating 5 out of 5]

What a delightfully morbid book! I know that might sound like strange praise, but sometimes we need honesty more than we need positivity (especially when it’s the toxic kind).

I took so many notes on this one! There were numerous insights that helped me see things from a different perspective, and I even changed my mind on some beliefs based on the author’s reasoning.

Here are a few examples of my favorite passages:

“Care is the intersection of attention and intention.”

“What we do in the face of certain defeat is what matters.”

“Capitalism, with its logic of exploitation, requires some of us to die.”

This is a book that perfectly complements the times of overwhelming doom we’re in. The author explains how we can see that doom as liberatory. I’m glad I found it.

[Ashley · Rating 5 out of 5]

HAPPY PUB DAY!

(4.5/5, rounded up)

(full review to come, but seeing as it's pub day I wanted to at least say that this book is phenomenal. they should insert the sound of a mic drop at the end of the audiobook. I highly recommend this book to anyone - no matter your connection to disability. Be forewarned though, there's some pretty heavy description of kink. prob confusing to hear, I swear it'll make sense in context.)

{Thank you bunches to NetGalley, Johanna Hedva and publishers Dreamscape Select and Hillman Grad Books for the ALC in exchange for my honest review!}

[Madi · Rating 3 out of 5]

3.5 stars

enjoyed this a lot in the beginning and think it has much to offer in the first 40-50%. but like many others, it fell apart for me a bit in the second half. johanna talking about her sex life and kink didn’t put me off but using the term “neurospicy” unironically, talking about how much they love sucking dick and cock and not talking about relationships with women much after calling themselves a dyke, overuse of the word bitch and the deeply uncomfortable way they talked about “the freak” all detracted from the reading experience for me.

[August Sable · Rating 5 out of 5]

As a queer nonbinary disabled person with fibromyalgia and bipolar - I felt like this book was made for me. It gave me so much of the language needed to convey my experience to those who are within my “blast radius” (truly such a good term for this). The most helpful essay in this book also comes at the very beginning, Sick Woman Theory, and should honestly be required reading for every person ever.

[Rachel · Rating 4 out of 5]

so much to chew on, looking forward to talking about this one more in book club