Key Takeaways
1. Illness & Disability: Not Failures, But Universal Truths
To be alive on this earth is to live in the abundance of the body’s peculiarities, and to have a body is to be determined by that body’s ceaseless needs, and bodies, even at their best, even if they aspire to nothing else, are so delicate and dependent that they can’t get by alone.
Bodies are fragile. The human body is inherently delicate and dependent, requiring constant care and support. This is a universal truth, not a personal failing. Our stories often exclude illness, portraying heroes dying on battlefields, not from chronic conditions, but this is a false narrative.
Reclaiming the narrative. We must challenge the stories that shame and hide illness and disability, recognizing them as universal facts of life, not individual failures. We need to expand our language to include the full spectrum of experiences, from the mundane to the monstrous, and to understand that these experiences are not aberrations but integral to the human condition.
Beyond the binary. We must move beyond the binary of strength and weakness, recognizing that what is often considered weak may be another kind of strength. We must also challenge the notion that illness and disability are temporary aberrations to a fantastical norm of wellness.
2. Ableism: A System Protecting Us From Mortality
Ableism protects us from the most brutal truth: that our bodies will disobey us, malfunction, deteriorate, need help, be too expensive, decline until they finally stop moving, and die.
Denial of fragility. Ableism is a system that assigns value based on constructed ideas of normalcy, productivity, and fitness. It allows us to believe that our bodies are always under our control and will function as we want them to, protecting us from the reality of our own limits and mortality.
Universal condition. Disability is not a distant possibility but a universal condition that will arrive for everyone sooner or later. It is a radical encounter with the needs of the body and the ways in which autonomy is limited and dependency is decided.
Challenging the system. We must challenge the lies that tell us we are sovereign individuals dependent on no one, and that those who need care are less valuable. We must recognize that care is always required, and those who need it or practice it are not less human.
3. Crip Time: Reclaiming Time From Capitalism
During those years of becoming disabled—when illness and all its words broke in and took over—time got slow and sedulous and, although full of labor, it was “unproductive” in the capitalist sense, which is to say, it became crip.
Disability and time. Disability disrupts capitalism's unholy marriage of time and money, putting a person into a state of financial and bodily insolvency. It forces a reckoning with different kinds of time, including the slow, sedulous, and "unproductive" time that capitalism devalues.
Crip time as resistance. "Crip time" is a reclamation of the slur "cripple," proposing a politics of empowerment that agitates against that which is considered deviant about disability. It redefines what being dependent means and challenges the capitalist notion of linear, quantitative time.
Redefining productivity. Crip time bends the clock to meet disabled bodies and minds, rather than forcing disabled bodies and minds to meet the clock. It is a way of understanding time that is not defined by capitalist productivity but by the needs of the body and mind.
4. The Sick Woman: A Political Identity of the Uncared-For
The Sick Woman is anyone who does not have this guarantee of care.
Beyond the individual. The "Sick Woman" is not just a personal experience but a political identity that encompasses anyone denied the privileged existence of the white, straight, healthy, neurotypical, upper- and middle-class, cis- and able-bodied man. It is a body and mind that is sensitive and reactive to regimes of oppression.
Systemic oppression. The Sick Woman is the person upon whom care that is in fact a tool of eugenics is inflicted, care that masks control, surveillance, and domination. She is told that her survival does not matter, and her suffering is the very thing that pathologizes her.
A call to action. Sick Woman Theory is a manifesto for those who were never meant to survive, for those who must live in a reality that is unbearable but which nevertheless must be borne. It is a call to arms and a testimony of recognition, a mirror as much as a door, tools of survival and resilience, a bed in which to rest.
5. Care as Radical Interdependence and Anti-Capitalist Protest
The most anti-capitalist protest is to care for another and to care for yourself.
Interdependence over independence. Care is a radical act of interdependence, a recognition that we are all reliant on each other. It is a rejection of the capitalist myth of the sovereign individual and an embrace of mutual aid and support.
Care as resistance. To take on the historically feminized and therefore invisible practice of nursing, nurturing, and caring is a form of anti-capitalist protest. It is a way of prioritizing vulnerability and fragility, and of building a community of support.
A new world. By prioritizing care, we can challenge the capitalist logic that requires some of us to die. When we are all ill and confined to bed, sharing our stories and prioritizing our needs, capitalism will screech to a halt.
6. The Blast Radius: Disability's Devastating and Creative Force
Maybe the blast radius of disability destroys everything and also makes new worlds.
The before and after. Disability often arrives as a dramatic pivot, slicing life into a before and after. It is a devouring cloud that eats away at the body, identity, and relationships.
Beyond linearity. The blast radius of disability is not a linear progression but a 360-degree expansion that disrupts chronological time. It is a cyclical, haunted time that is full of memory, flashbacks, and reassessments of the past.
New possibilities. Despite its devastation, disability can also create new worlds, new ways of understanding dependency, autonomy, and the body. It can lead to a politics of interdependence, support, and mutual aid.
7. De-Persons: Refusing Mastery and Embracing Disorder
A defense of a de-person could be said to be an embodiment of incompleteness, a demonstration of wayward thinking, a performance of un-comprehension, a refusal of mastery at all.
Challenging self-mastery. The concept of the "person" is often defined by self-possession and self-mastery, which are the most legible and preferred forms of selfhood within a society built upon the ideology of possession. De-persons, those who do not fit this mold, are often pathologized.
Refusal of control. Depersonalization and derealization, often seen as disorders, can be read as a refusal of the mastery and wholeness that society demands. They are a way of challenging the notion that what cannot be controlled ceases to be real.
Radical sociality. The affirmation of de-person-ness is not a refusal of individualism but an affirmation of indiscreteness, a tremendous indiscretion. It is a move toward a radical sociality, where we are all interconnected and interdependent.
8. Activism: A Practice of Trying, Not Always Succeeding
The most anti-capitalist protest is to care for another and to care for yourself.
The messy reality. Activism is hard, exhausting, and frustrating. It is full of failures, setbacks, and disappointments. It is important to acknowledge these realities, rather than presenting a sanitized version of the struggle.
Trying is the point. Activism is about trying to do something that has never been done before, and the most important part of that sentence is the word "trying." It is about persisting in the face of certain defeat and still choosing to act.
Exhaustion as success. The more exhausted you are, the more successful your activism has probably been. This is because activism is about giving it all you have, even when you know you might fail.
9. Kink as a Language of Power, Pleasure, and Care
Kink is care, and care is kink.
Beyond the norm. Kink is a language of power, pleasure, and desire that ruptures the seemingly impervious actions, rules, and choreographies that stabilize power. It is a way of exploring the boundaries of consent and control.
Intimacy and vulnerability. Kink can be a way of connecting with others on a deep and intimate level, of exploring vulnerability and fragility, and of creating a space for mutual support and care.
Challenging binaries. Kink challenges the binaries of good and bad, right and wrong, and allows for a more nuanced understanding of human desire and sexuality. It is a way of embracing the messiness and complexity of our bodies and minds.
10. The Hag: A Figure of Survival, Fury, and Surrender
The Hag will rot, but she will not disappear.
Beyond the witch and grandmother. The Hag is a figure that transcends the traditional roles of the grandmother and the witch. She is not defined by her love for grandchildren or her ability to use magic, but by her ability to linger, to survive, and to endure.
Embracing the mess. The Hag is prone to sciatica and migraines, she moans and cries, she pops pills, she masturbates, she snores and curses. She knows her body through pain and understands that it is a site of both suffering and power.
A refusal to disappear. The Hag will not put a spell on anyone, she will not make anyone fall in love with her, she will not poison anyone if she gets angry. She is simply a hag, walking away, with her back bent forward, with her eyes wandering, searching for a place to hold on to, to give it a name, to claim it for herself.
11. The Power of Telling Our Stories, Together
We are not alive because of our stories, but it is true to say that, in telling them, they birth and rebirth us, and who doesn’t need to be reborn from time to time?
Stories as rebirth. We are not alive because of our stories, but in telling them, they birth and rebirth us. Stories are a way of metabolizing our experiences, of making sense of the messiness of life, and of finding connection with others.
Challenging the dominant narrative. We must challenge the stories that have long been denied, the ones that we have worried, if told, might not help us live. We must find ways to tell stories that are enlivened, vivified, not despite illness and disability but because of them.
A collective act. Telling our stories is not just an individual act but a collective one. It is a way of building community, of finding solidarity, and of creating a world where all of our stories are valued and heard.
Last updated:
FAQ
1. What is How to Tell When We Will Die: On Pain, Disability, and Doom by Johanna Hedva about?
- Exploration of illness and identity: The book is a deeply personal and political meditation on chronic illness, disability, pain, and mortality, blending memoir, manifesto, cultural criticism, and poetry.
- Critique of societal narratives: Hedva challenges the dominant stories that frame illness as temporary, shameful, or individual, instead centering disability as a political and collective experience.
- Interdisciplinary approach: The narrative weaves together influences from queer theory, disability justice, astrology, metal music, and kink to create a multifaceted exploration of living with chronic illness.
- Focus on care and solidarity: The book advocates for redefining care as a radical, political act rooted in interdependence and mutual aid, especially within marginalized communities.
2. Why should I read How to Tell When We Will Die by Johanna Hedva?
- Unique, intersectional perspective: Hedva offers insights as a queer, nonbinary, Asian disabled intellectual, expanding the conversation around illness and disability beyond traditional narratives.
- Radical vulnerability and power: The book is praised for its honesty and originality, showing how vulnerability can be transformed into a source of power and resistance.
- Political urgency: Hedva addresses the lack of large-scale reckoning with ableism, urging readers to confront the realities of bodily decline and the politics of care.
- Rich, multifaceted writing: The blend of memoir, theory, and cultural criticism makes it a compelling read for those interested in disability justice, queer theory, and social transformation.
3. What are the key takeaways from How to Tell When We Will Die by Johanna Hedva?
- Illness as political: Chronic illness and disability are not just personal experiences but are shaped by and shape social, political, and economic systems.
- Ableism as systemic oppression: Ableism is a pervasive system that devalues bodies and minds based on constructed norms, and dismantling it is essential for justice.
- Care as resistance: Mutual, interdependent care is framed as a revolutionary act that challenges capitalism and the myth of individual autonomy.
- Embracing messiness and failure: The book encourages embracing the complexities, failures, and nonlinear experiences of living with pain and disability.
4. What are the best quotes from How to Tell When We Will Die by Johanna Hedva and what do they mean?
- “Care is the most anti-capitalist protest.” This quote reframes care as a radical act that resists the exploitation and individualism of capitalism.
- “You do not have to be disabled to experience ableism.” Hedva highlights that ableism affects everyone, not just disabled people, by enforcing harmful norms.
- “Sickness is fucking metal.” This phrase reclaims sickness as a source of power, rage, and survival, challenging the idea that vulnerability is weakness.
- “Healing is inseparable from justice.” Hedva links personal healing to broader social and political transformation, emphasizing the need for systemic change.
5. How does Johanna Hedva define ableism in How to Tell When We Will Die?
- Systemic value assignment: Ableism is defined as a system that assigns value to people’s bodies and minds based on constructed ideas of normalcy, productivity, and desirability.
- Rooted in multiple oppressions: Hedva cites Talila A. Lewis’s definition, noting ableism’s roots in eugenics, anti-Blackness, misogyny, colonialism, imperialism, and capitalism.
- Protective fantasy: Ableism allows society to deny the inevitability of bodily decline and death, maintaining myths of independence and sovereignty.
- Barrier to justice: It marginalizes disabled people through infantilization, pathologization, and exclusion, making its dismantling crucial for a just society.
6. What is "Sick Woman Theory" in How to Tell When We Will Die by Johanna Hedva?
- Manifesto for the marginalized: Sick Woman Theory reclaims the figure of the “Sick Woman” as a political subject embodying interdependence and resistance.
- Critique of feminized vulnerability: The theory challenges the idea that vulnerability and care are weaknesses, instead framing sickness as powerful and radical.
- Intersectional inclusivity: The Sick Woman represents anyone denied normative health and autonomy, including people of color, queer and trans people, disabled, poor, and neurodivergent individuals.
- Call to solidarity: It insists on recognizing care as revolutionary and demands that society reshape itself around bodily fragility and mutual aid.
7. What is the significance of the concept of "kairos" in How to Tell When We Will Die by Johanna Hedva?
- Cyclical, opportune time: Kairos is an ancient Greek term for a kind of time that is cyclical and about the “right moment,” distinct from linear, chronological time.
- Metaphor for fate and illness: In modern Greek, kairos also means “weather,” symbolizing fate as an atmosphere or background condition to live with.
- Application to chronic illness: The concept frames chronic illness and disability as ongoing, shaping life’s rhythms and emphasizing adaptation over cure.
- Acceptance and adaptation: Kairos encourages embracing the unpredictability and cyclical nature of pain and survival.
8. How does Johanna Hedva use astrology and mythology in How to Tell When We Will Die?
- Astrological metaphors: Hedva uses the story of Chiron, the wounded healer, to explore wounds that never fully heal but can lead to healing others.
- Framework for fate and healing: Astrology provides a way to understand the interplay of fate, suffering, and personal will, especially in the context of chronic illness.
- Personal and client work: Hedva discusses using astrology with clients to talk about fate, wounds, and adaptation, likening some wounds to weather—ever-present but manageable.
- Layered literary richness: Mythology and astrology enrich the text, offering new ways to think about pain, identity, and survival.
9. What does Johanna Hedva mean by "the blast radius of disability" in How to Tell When We Will Die?
- Metaphor for impact: The “blast radius” describes the profound, far-reaching effects of becoming disabled, which can shatter body, identity, relationships, and social participation.
- Nonlinear experience: Disability disrupts linear narratives, creating a complex, cyclical experience of time (“crip time”) that challenges capitalist productivity.
- Internal and external effects: The blast radius includes internalized ableism, shame, and guilt, as well as external discrimination and loss of support.
- Potential for new community: Despite its challenges, the blast radius can also foster new communities, political consciousness, and solidarity.
10. What is "hermeneutical power" in How to Tell When We Will Die by Johanna Hedva, and why is it important?
- Power to resist narratives: Hermeneutical power is the ability to disagree with dominant narratives about oneself and to create new, subversive meanings.
- Form of resistance: It allows marginalized people to challenge oppressive language and reclaim slurs or negative labels, such as “queer” or “crip.”
- Survival and identity: While not traditional political power, hermeneutical power is crucial for survival and the formation of authentic identities.
- Examples in the book: Hedva discusses reclaiming terms and refusing imposed meanings as acts of resistance and self-definition.
11. How does How to Tell When We Will Die by Johanna Hedva address the politics of care, activism, and revolution?
- Care as revolutionary: Hedva argues that mutual, interdependent care is the most anti-capitalist protest, challenging exploitation and individualism.
- Activism’s challenges: The book acknowledges that activism is exhausting, often involves failure, and requires persistence despite likely defeat.
- Reframing success and failure: Hedva suggests that exhaustion and failure are inevitable parts of activism and should be embraced as signs of engagement.
- Revolution beyond protest: The labor of care, refusal to work, and collective support are all framed as revolutionary acts, especially for disabled and sick people.
12. What is Johanna Hedva’s Disability Access Rider, and what does it reveal about ableism and survival?
- Detailed accessibility needs: The Access Rider is a document Hedva created to communicate her needs for travel, lodging, and event accommodations.
- Institutional challenges: Hedva describes the ongoing struggle and unpaid labor required to secure accessibility, highlighting institutional ignorance and lack of resources.
- Political critique: The Rider is not just a list of demands but a critique of ableism and capitalism, emphasizing that access is about survival and collective responsibility.
- Model for others: The Access Rider serves as both a practical tool and a political statement, encouraging others to assert their needs and challenge systemic barriers.
Review Summary
How to Tell When We Will Die received mixed reviews, with praise for its powerful essays on disability, chronic illness, and societal critique. Many readers found the book thought-provoking and relatable, particularly the "Sick Woman Theory" essay. However, some felt the later essays were disorganized or too focused on personal experiences. The book's explicit content and academic tone were divisive. Overall, readers appreciated Hedva's candid exploration of disability, care, and identity, though some found parts challenging or inaccessible.
Similar Books
Download PDF
Download EPUB
.epub digital book format is ideal for reading ebooks on phones, tablets, and e-readers.
