How will we know when we will die?
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Description
Book Introduction
The first collection of essays by Johanna Hedvar, whose "Sick Woman Theory" was translated and introduced in Korea in 2020, causing a sensation.
As someone with a chronic illness, neurodiverse, disabled, and nonbinary, the author exposes in this book how ableism infects all ideologies of oppression, and how capitalism cannot function without ableism.
As someone with a chronic illness, neurodiverse, disabled, and nonbinary, the author exposes in this book how ableism infects all ideologies of oppression, and how capitalism cannot function without ableism.
- You can preview some of the book's contents.
Preview
index
How will we know when we will die?
Sick Woman Theory
Blast radius of the obstacle
Defense for Lee In
Get well soon
Thoughts on activism (or its failure)
Letter to a Young Doctor
soft blues
Can I hit you?
The Freak
A Thought on Trash Talk (or a Thought on Community)
The thing that is visible from farther away than any other color on Earth: P.
About the staff
Blood-Stained White Nightgowns: On Kier-La Janis's "The House of the Mentally Ill"
She, etc.: On Susan Sontag and the Myth of Illness
A short story about ambition (or a short story about survival)
Additional Accessibility Provisions in the Headbar
A day when I just stayed in my room
It's soft and then hardens
Why does it take so long?
Halmanggu Chief
Acknowledgements
Translators' Notes
References
Search
Sick Woman Theory
Blast radius of the obstacle
Defense for Lee In
Get well soon
Thoughts on activism (or its failure)
Letter to a Young Doctor
soft blues
Can I hit you?
The Freak
A Thought on Trash Talk (or a Thought on Community)
The thing that is visible from farther away than any other color on Earth: P.
About the staff
Blood-Stained White Nightgowns: On Kier-La Janis's "The House of the Mentally Ill"
She, etc.: On Susan Sontag and the Myth of Illness
A short story about ambition (or a short story about survival)
Additional Accessibility Provisions in the Headbar
A day when I just stayed in my room
It's soft and then hardens
Why does it take so long?
Halmanggu Chief
Acknowledgements
Translators' Notes
References
Search
Into the book
The body is the ground on which we write our lives.
So let's reach out to that ground, to the story, to all of it, to the ways it ends.
Let's tell the whole story, every possible version.
--- p.49-50
Becoming disabled has been an education for me in many ways.
--- p.18
During the years I was becoming disabled, time passed slowly and meticulously, and although I did all sorts of work, that time was “unproductive” in the capitalist sense.
So to speak, that time became a time of disability.
--- p.19
The most important part of the word disability is dis, which means not, lack, or apart.
--- p.29
Disability describes a state of being more othered from one's body than any other political condition I can think of, yet at the same time being extremely close to it.
This is a fundamental encounter with the needs of the body, with the ways in which its autonomy is limited and its dependence determined.
--- p.29
Ability-centrism is more actively promoted because of the inevitability of disability.
It makes us believe that our body is at the mercy of our will.
It is no easy task to break the ableism that promises safety and protection.
The author knows this too, and all he can say now is, “Let’s do it together.”
--- p.32
Activism is about doing things the way we've done them before, and doing them the way they've been done for generations, and so, because no one's done it before, it's bound to fail more than the old way.
--- p.130
Every time I use the word “normal,” I find myself looking at it with a puzzled expression.
What on earth is that?
--- p.144
Continuing to advocate for material support and comfort does not discredit my disability justice movement.
Rather, it supports the core of the movement.
Having enough money and support is what guarantees prosperity.
--- p.342
I want ableism to be understood as an integral component of all oppressive ideologies: capitalism, white supremacy, sexism, misogyny, homophobia and transphobia, classism, imperial colonialism and settler colonialism.
All these ideologies feed off each other, need each other to function, and above all, require ableism.
So let's reach out to that ground, to the story, to all of it, to the ways it ends.
Let's tell the whole story, every possible version.
--- p.49-50
Becoming disabled has been an education for me in many ways.
--- p.18
During the years I was becoming disabled, time passed slowly and meticulously, and although I did all sorts of work, that time was “unproductive” in the capitalist sense.
So to speak, that time became a time of disability.
--- p.19
The most important part of the word disability is dis, which means not, lack, or apart.
--- p.29
Disability describes a state of being more othered from one's body than any other political condition I can think of, yet at the same time being extremely close to it.
This is a fundamental encounter with the needs of the body, with the ways in which its autonomy is limited and its dependence determined.
--- p.29
Ability-centrism is more actively promoted because of the inevitability of disability.
It makes us believe that our body is at the mercy of our will.
It is no easy task to break the ableism that promises safety and protection.
The author knows this too, and all he can say now is, “Let’s do it together.”
--- p.32
Activism is about doing things the way we've done them before, and doing them the way they've been done for generations, and so, because no one's done it before, it's bound to fail more than the old way.
--- p.130
Every time I use the word “normal,” I find myself looking at it with a puzzled expression.
What on earth is that?
--- p.144
Continuing to advocate for material support and comfort does not discredit my disability justice movement.
Rather, it supports the core of the movement.
Having enough money and support is what guarantees prosperity.
--- p.342
I want ableism to be understood as an integral component of all oppressive ideologies: capitalism, white supremacy, sexism, misogyny, homophobia and transphobia, classism, imperial colonialism and settler colonialism.
All these ideologies feed off each other, need each other to function, and above all, require ableism.
--- p.421
Publisher's Review
The sick woman speaks
“Whatever the future holds, there will be obstacles.”
In 2020, the "Sick Woman Theory" arrived in Korea.
This declaration, translated and distributed by the webzine Off Magazine (translator: Heo Ji-woo), caused a great stir by exposing the structural vulnerability experienced by ‘sick women.’
In addition to Korean, it was translated into ten other languages, and people all over the world began to call out the unfamiliar name "The Sick Woman Theory" and Johanna Hedvar.
At the same time, in Korea, experiences and critical thinking on a wide range of illnesses and diseases, including disability, the sick body, neurodiversity, illness narratives, chronic illness, autoimmune diseases, and the relationship between women and medicine, have exploded.
Johanna Hedvar has arrived back in Korea.
In 2024, he unveiled his single-channel video work, “All Fears Are Fascinating (in collaboration with Ron Ay),” at the omnibus exhibition “I Want to Love Us” held at the Buk Seoul Museum of Art in Seoul, and visited Korea in person for an artist talk to meet with Korean audiences and readers.
Johanna Hedvar, a Los Angeles-based artist, musician, and writer, wrote this book as a nonbinary, chronically ill, and neurodiverse person.
He spent ten years writing this book, sometimes suffering from pain so severe that he could not get out of bed for days or even months.
Above all, this book, which sharply criticizes ableism, deals with “one more thing” (p. 401) that we need to know about disability, such as pain and care, the politics of give and take, and the time of disability.
The body always needs something
Presenting a framework for the awareness needed to sustain long-term care
The author chose the term ‘woman’ as the subject of this work.
Of course, the author, who rejects biological binaries, recognizes that “the identity of woman has erased and excluded many people (especially women of color and transgender/nonbinary/genderfluid people),” but the term “woman” still includes “the uncared for, the second-class citizen, the oppressed, the non-, the un-, the less-than” (p. 80).
From the perspective of a sick woman, in a non-disabled capitalist system, being sick, chronically sick, or disabled is always considered temporary or something to be overcome.
So, is care also temporary? The author repeatedly points out that the body always needs something and requires support.
This book makes us realize that the very fact that we have a living body requires care.
Why Accessibility Should Be Treated as an 'Additional' Issue
The Seoul subway commute protests, which have been consistently held by the National Coalition for the Elimination of Discrimination against Persons with Disabilities since 2021, are providing citizens with an opportunity to deeply consider the issue of 'accessibility.'
As the "Sick Woman Theory" spread, the author also received requests to lecture all over the United States, but the problem was accessibility.
I had to go through a lot of arguments with event organizers about things like the lack of elevators or ramps in places where people were discussing disability, and the invitations that didn't support my understanding of my body's inability to move around for long periods of time.
As a disability activist, he has been involved in countless 'email battles', so he wrote a document called "Additional Information on Accessibility" and included it in this book (pp. 343-350). If you heard even the slightest bit of resistance while reading this short document asking for things like money, time, care support during business trips, things to know about air travel, accommodations, event venue accessibility, sign language and subtitle support, and more, you should read this book from the beginning.
The reason why we must create a society that does not need this kind of 'swelling' is clear.
“Disability is always there, and the question should not be if, but when it will reach you.
Disability is different from any political identity.
Because not everyone in this administration will one day be queer, non-white, female, or colonized, but they will be disabled” (p. 30).
There is no later time when it comes to accessibility issues.
The fate that has no choice but to tell and the will to tell
Tell is the most important word in this book.
Speaking so that it is clear that someone is listening.
It is not enough to just talk to yourself, moan, or scream in your room, on your bed, or in your hospital room.
The author wants to tell the story to everyone who can sit down with him.
Because having a story is proof of being alive.
Although this book is written in the first person, it doesn't feel like the author is speaking alone.
The author says:
“I tried to treat reading other people’s stories as equally as I tried to write my own, and conversely, to read my own story as if it were written by someone else,” and “I tried to tell stories that had been rejected for a long time...
“I realized that telling stories created more life, not less.” (p. 45) This book has an extraordinary capacity for acceptance.
“This wasn’t written for me.
This article will no longer exist for me in the future.
“For some “us” this book might gather, for someone who didn’t recognize themselves on the first page but is now here, this book has existed and will exist.” (p. 427)
About the body design
The design of the text of this book was designed to take into consideration the needs of people with impaired vision, such as the elderly, those with presbyopia, and those with low vision.
The font used was mainly KoddiUD OnGothic developed by the Korea Disabled People's Development Institute.
Gothic fonts without serifs are said to look less complicated and thus more readable.
According to accessibility suggestions, the font size should normally be 13-14 points, but for this book we compromised to 10.8 points, which is slightly larger than other single-volume books.
I chose a right-hand indentation with a clear beginning and end for each line and a relatively clear paragraph division.
Rather than simply following the italics of the original text or changing them to a different font, the text is distinguished by white letters on a black background, and the color inversion is intended to increase distinguishability.
I know that even making this explanation is 'able-centered'.
If design for low vision was the default, there would be no need to worry about this design, which would be unfamiliar to those whose vision can be corrected with glasses.
As the author asked, I cannot help but ask.
“Why does it take so long?” (p. 399)
“Whatever the future holds, there will be obstacles.”
In 2020, the "Sick Woman Theory" arrived in Korea.
This declaration, translated and distributed by the webzine Off Magazine (translator: Heo Ji-woo), caused a great stir by exposing the structural vulnerability experienced by ‘sick women.’
In addition to Korean, it was translated into ten other languages, and people all over the world began to call out the unfamiliar name "The Sick Woman Theory" and Johanna Hedvar.
At the same time, in Korea, experiences and critical thinking on a wide range of illnesses and diseases, including disability, the sick body, neurodiversity, illness narratives, chronic illness, autoimmune diseases, and the relationship between women and medicine, have exploded.
Johanna Hedvar has arrived back in Korea.
In 2024, he unveiled his single-channel video work, “All Fears Are Fascinating (in collaboration with Ron Ay),” at the omnibus exhibition “I Want to Love Us” held at the Buk Seoul Museum of Art in Seoul, and visited Korea in person for an artist talk to meet with Korean audiences and readers.
Johanna Hedvar, a Los Angeles-based artist, musician, and writer, wrote this book as a nonbinary, chronically ill, and neurodiverse person.
He spent ten years writing this book, sometimes suffering from pain so severe that he could not get out of bed for days or even months.
Above all, this book, which sharply criticizes ableism, deals with “one more thing” (p. 401) that we need to know about disability, such as pain and care, the politics of give and take, and the time of disability.
The body always needs something
Presenting a framework for the awareness needed to sustain long-term care
The author chose the term ‘woman’ as the subject of this work.
Of course, the author, who rejects biological binaries, recognizes that “the identity of woman has erased and excluded many people (especially women of color and transgender/nonbinary/genderfluid people),” but the term “woman” still includes “the uncared for, the second-class citizen, the oppressed, the non-, the un-, the less-than” (p. 80).
From the perspective of a sick woman, in a non-disabled capitalist system, being sick, chronically sick, or disabled is always considered temporary or something to be overcome.
So, is care also temporary? The author repeatedly points out that the body always needs something and requires support.
This book makes us realize that the very fact that we have a living body requires care.
Why Accessibility Should Be Treated as an 'Additional' Issue
The Seoul subway commute protests, which have been consistently held by the National Coalition for the Elimination of Discrimination against Persons with Disabilities since 2021, are providing citizens with an opportunity to deeply consider the issue of 'accessibility.'
As the "Sick Woman Theory" spread, the author also received requests to lecture all over the United States, but the problem was accessibility.
I had to go through a lot of arguments with event organizers about things like the lack of elevators or ramps in places where people were discussing disability, and the invitations that didn't support my understanding of my body's inability to move around for long periods of time.
As a disability activist, he has been involved in countless 'email battles', so he wrote a document called "Additional Information on Accessibility" and included it in this book (pp. 343-350). If you heard even the slightest bit of resistance while reading this short document asking for things like money, time, care support during business trips, things to know about air travel, accommodations, event venue accessibility, sign language and subtitle support, and more, you should read this book from the beginning.
The reason why we must create a society that does not need this kind of 'swelling' is clear.
“Disability is always there, and the question should not be if, but when it will reach you.
Disability is different from any political identity.
Because not everyone in this administration will one day be queer, non-white, female, or colonized, but they will be disabled” (p. 30).
There is no later time when it comes to accessibility issues.
The fate that has no choice but to tell and the will to tell
Tell is the most important word in this book.
Speaking so that it is clear that someone is listening.
It is not enough to just talk to yourself, moan, or scream in your room, on your bed, or in your hospital room.
The author wants to tell the story to everyone who can sit down with him.
Because having a story is proof of being alive.
Although this book is written in the first person, it doesn't feel like the author is speaking alone.
The author says:
“I tried to treat reading other people’s stories as equally as I tried to write my own, and conversely, to read my own story as if it were written by someone else,” and “I tried to tell stories that had been rejected for a long time...
“I realized that telling stories created more life, not less.” (p. 45) This book has an extraordinary capacity for acceptance.
“This wasn’t written for me.
This article will no longer exist for me in the future.
“For some “us” this book might gather, for someone who didn’t recognize themselves on the first page but is now here, this book has existed and will exist.” (p. 427)
About the body design
The design of the text of this book was designed to take into consideration the needs of people with impaired vision, such as the elderly, those with presbyopia, and those with low vision.
The font used was mainly KoddiUD OnGothic developed by the Korea Disabled People's Development Institute.
Gothic fonts without serifs are said to look less complicated and thus more readable.
According to accessibility suggestions, the font size should normally be 13-14 points, but for this book we compromised to 10.8 points, which is slightly larger than other single-volume books.
I chose a right-hand indentation with a clear beginning and end for each line and a relatively clear paragraph division.
Rather than simply following the italics of the original text or changing them to a different font, the text is distinguished by white letters on a black background, and the color inversion is intended to increase distinguishability.
I know that even making this explanation is 'able-centered'.
If design for low vision was the default, there would be no need to worry about this design, which would be unfamiliar to those whose vision can be corrected with glasses.
As the author asked, I cannot help but ask.
“Why does it take so long?” (p. 399)
GOODS SPECIFICS
- Date of issue: June 18, 2025
- Page count, weight, size: 536 pages | 722g | 140*220*35mm
- ISBN13: 9791190853675
- ISBN10: 1190853671
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