It’s clear that the author of this book is incredibly intelligent. As someone who’s disabled, I was really excited to read this book. However, I found it to be quite dense and hard to follow at times. The formatting felt like a hybrid of essays mixed with a literature review. I unfortunately felt like I couldn’t find flow when reading this book. The points made throughout the book are important, and at times are delivered in a blunt manner. Thank you for the opportunity to review this ARC.

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.

4 stars

Thank you to Zando and NetGalley for a copy of this book in exchange for an honest review.

This collection of essays on “pain, disability, and doom” were great to read, especially with how much our world is centered around ableism. I enjoyed Hedva’s ability to fit so many discussions on important issues that should matter to all of us.

CW: mental illness, chronic illness, miscarriage, child abuse, medical trauma, pandemic/epidemic, alcoholism, suicide, abandonment

Johanna Hedva's HOW TO TELL WHEN WE WILL DIE: ON PAIN, DISABILITY, AND DOOM is a phenomenal book. I had no idea how gorgeous and horrifying, how complex and brain-rearranging this book would be.

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.

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.

thank you to netgalley, author johanna hevda, zando and hillman head books for the ARC digital copy of this book in exchange for an honest review.
this book is hard to summarize and put into words. essays range from discussions on mental health, chronic illness, being queer, feminism, self expression and each is filled to the brim with emotions/feeling.
the author has a very personal way of speaking/writing, and i quite enjoyed the bluntness and raw feelings behind the essays.
hevda’s disability access rider appealed to me as someone seeking accommodations and carving their own way in the world. the bluntness and honestly of needs was refreshing and what i needed to hear.
get well soon and similar essays were also refreshing. i liked the perspective of the inherent nature of disability and illness in so many of our lives.
this was a unique read that i will be thinking about for a long time.

This is a memoir by a disabled person who has worked within the limitations of their body to live life to the fullest. As a woman who is currently in “the blast radius of disability,” as Hedva terms it, I was most intrigued by the first few essays in the book. Then the stories centering violence and kinky sex got under my skin, and I lost interest. I think I might enjoy this more as an audiobook. In any case, I am glad that Hedva shared this work for others who can see themselves in it.

This collection of essays was punch to the gut because Hedva writes it with that intention. Unrelentingly raw and necessary. This is a book I feel everyone should read at least once in their lifetimes. As someone with autism so many of the things she spoke about resonated with me and even opened my mind to ableism in society I hadn't even though of and the discussion on how society views and rewards what they deem strength, that I will forever think about things in a different way.

Johanna Hedva rocked the world with her original essay, and the expansion of those themes in this book work perfectly. Thank you to Netgalley and the publisher for this advanced DRC! The reason I love Hedva's work so much is that it's philosophical and curious in its approach to the occult, spirituality and how those two intertwine with disability. As a fellow astrologer, one of the things we contend and ponder is our belief in fate or free will. Hedva's prose is dense, morbid and beautiful-- making for a challenging read, but one that is relatable to those who are familiar with her work as well as those who are disabled. (I'm the ideal audience, lol.) It almost gets meta, when Hedva talks about the process of writing the book *in* the book.

I love the idea of doom as an inevitability and liberatory in nature. It's a radical concept, but one that I agree with as a death doula. We *will* all become disabled in our lifetime, and we all die. The issue is, how are we going to better equip ourselves with the inevitable if we do not speak about it? Give a voice to the name? The essays (or chapters-- unclear how it's split up or referred to in the Kindle version, which is hard with formatting for these advanced copies) have a good flow to them, and are informative and ask a lot of pertinent and real questions. I can't wait to buy and recommend this book to my friends when it comes out.

this was an absolutely spectacular collection of essays on what it means to be disabled in the world that we live in. it is frank and sharp and incisive and pulls absolutely no punches, insisting that all readers - abled or disabled - not just face that we're all imbued with our own internalized ableism and why, but it demands that readers unravel this by showing us how ableism is perpetuated, both systemically and individually.

there were so many brilliant takeaways in this from me. one aspect i really connected with was how hedva discussed the fundamental source of ableism - that, if we live long enough, being disabled (and dying) is an eventuality for all of us, and the fear/ignorance/exclusion of people who find themselves much sooner than the rest of us is a product of our own internalized fears of these things. incredible. hedva also speaks a lot on community and community healing. when i was reading, i thought about my own experiences with caregiving, how the person that i caregive for often considers themselves requiring care something that makes them a burden, how those feelings can be erased if we lived in a society that didn't treat providing care as 'going above and beyond' but something that we all participate in to make sure that everyone's needs are met.

for me, there were a lot of stand out essays in this collection, but two that i'll think about often - "letter to a young doctor" and "hedva's disability access rider". the first is hedva's response to a young doctor in medical school that has reached out for advice in dealing with patients. i absolutely love what hedva said here, about how doctors should assume a doctor/patient interaction is collaborative, that patients are experts in their own bodies that doctors could never be, that the hubris of medical professionals leads to misdiagnoses and breakdowns of critical care. the second is simply a glimpse into the requirements hedva asks for when doing events, the importance of those needs being met, the way that the rider is used as a document to not just advocate for themselves but as a way to advocate for others by asking for inclusive bathrooms and asking how care can be provided to event attendees.

ableism is super-pervasive, even amongst disabled people and this collection goes into how it continues to exist in so many different ways, but how, much like the work of dismantling any system of oppression, it requires empathy and communal work. really brilliant book.

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.

Thank you to NetGalley and the publisher for the eARC!

Johanna Hedva’s How to Tell When We Will Die: On Pain, Disability, and Doom is a masterful collection of essays that delve into the intricacies of living with disability, unraveling the norms that perpetuate ableism and insisting on institutional abolition. Hedva’s work is a stark, introspective journey that challenges readers to confront the often hidden realities of pain, disability, and systemic oppression. Through their incisive and philosophical prose, Hedva invites us to reimagine our understanding of disability, advocating for a more accessible and empathetic world.

One of the most compelling aspects of Hedva’s essays is their deconstruction of the shame and denial surrounding disability. In our society, strength and independence are often upheld as virtues, leaving those who cannot conform to these ideals feeling isolated and marginalized. Hedva brings this shame into the light, emphasizing that disability is a universal human experience. By doing so, they dismantle the harmful notion that needing help is temporary or flawed. This theme is poignantly explored in their essay “Blast Radius of Disability,” where Hedva’s personal experiences with disability become a powerful critique of ableism and capitalism.

Another standout essay is “Get Well Soon,” in which Hedva reimagines the revolutionary potential of disability. They challenge the conventional power dynamics between doctors and patients, advocating for a more collaborative and creative relationship. Hedva’s integration of astrology, witchcraft, and kink into their political analyses adds a unique and expansive dimension to their work, insisting on more diverse conceptions of what is possible for disabled bodies. Their insistence on self-determination for mentally ill individuals is both radical and liberating, pushing against the rigid confines of psychiatric labels.

The essays are not only deeply analytical but also profoundly personal. Hedva’s writing is dense and layered, and their prose is characterized by a stark and provocative tone. Their reflections on their own body and pain, described with a raw and almost visceral honesty, invite readers to engage with the material on an emotional level. Many of Hedva’s insights land like punches to the gut, revealing the everyday realities of living with a body that defies social norms and expectations.

Ultimately, Hedva’s essays are a call to action, urging us to acknowledge and dismantle ableism in all its forms. Their work is a testament to the power of personal narrative intertwined with political analysis, creating a space for reflection, empathy, and ultimately, change. How to Tell When We Will Die is a vital contribution to disability justice literature, challenging readers to rethink their assumptions and join in the fight for an accessible and liberated world.

📖 Recommended For: Readers interested in disability justice and abolition, those who appreciate philosophical and incisive prose, anyone exploring themes of pain, disability, and systemic oppression, fans of Health Communism and Leah Lakshmi Piepzna-Samarasinha.

🔑 Key Themes: Deconstruction of Ableism, Shame and Disability, Revolutionary Potential of Disability, Personal Narrative and Political Analysis, Self-Determination and Abolition.

Content / Trigger Warnings: Death of a parent (severe), Child abuse (moderate), Miscarriage (severe), Alcoholism (minor), Suicide (minor), Forced institutionalization (minor), Mental Illness (severe), Pandemic (moderate), Sexual content (minor), Toxic relationship (minor), Abandonment (minor), Drug abuse (minor), Medical trauma (moderate), Alzheimer’s (moderate).

This is one of the best things I have read this year. This queer mad crip story was what my soul needed and as a mad queer crip it regularly resonated hard with me. Care is not neat. Disability isn't ordered. I can not explain it better than: You need this. Believe me.

A really insightful collection of essays that I learnt a lot from. Disability is both fundamental to life yet does not (and should not) define or typify the work a writer produces, and this is certainly true throughout Hedva's essays. Hedva's narration of past relationships was vulnerable and written with a raw honesty and reflection. I loved the references to Audre Lorde, Kier-La Janisse's House of Psychotic Women, Susan Sontag, Deborah Levy and more. I also liked the additions to Sick Woman Theory to engage with the ongoing horrors of the world. An important read for those looking to educate themselves on disability, but also on the codependency of care and pain, the value of empathy when it's truly embodied, and the pedagogical function of illness. In a capitalist society that relies on productive bodies to prevail, Hedva's assertion that we will all one day become disabled forces a valuable recognition of our ultimate need for collaboration and the radical power of acknowledging our dependence on one another within a larger, social body.

This collection was great! It was nice to see these issues discussed so prominently as someone with a chronic ailment!