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

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

• 
  Lanelle

  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.
• 
  andrea

  thank you to NetGalley and Zando | Hillman Grad Books for the advanced digital copy.
  
  this book is out September 3, 2024.
  
  --
  
  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.
• 
  August

  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.
• 
  Ashley

  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!}
• 
  Brooke

  
  RTC
• 
  Avid Reader and Geek Girl

  Read if you're in the mood for something: challenging, emotional, hopeful, reflective, & medium-paced
  
  

  Book Rating: 4.75 stars
  I loved that it was frank and honest on many hard topics and how they talked about finding community. I wish I could find that kind of crip community. I have some crip friends but none who live near me.

  
  

  As a crip, mentally ill, queer person. I really enjoyed this book! However, it's not for everyone. There's talk of drug abuse, child abuse, and sexuality and kinks (nothing I found disgusting or extreme, as a fairly vanilla person, see spoilers in content warning notes section). It's definitely not what most would consider a "mainstream" book club type book.

  
  

  However, if you want to learn more about being a mentally ill and/or disabled person, and the author's personal journey, and none of the above mentioned topics would stop you from reading, it's an excellent read!

  
  

  Overall, it was an excellent book that I've already recommended to people I know. I think we need more honest disability memoirs like this. One's that aren't about being the miracle crip who "overcomes" their disability to do extraordinary things, as that's just not realistic for most crip people.

  
  
  

  Narrator Rating: 5.0 stars

  
  I found the author did an amazing job of reading their own book! It flowed well, and Johanna's narration added a personal element to the stories, as how they felt when writing each essay came through in the narration.
  
  

  I received an Audio ARC through the publisher and Netgalley in exchange for an honest review. All thoughts are original and my own.

  
  
  Content Warnings
  
  Graphic: Ableism, Chronic illness, Mental illness, Miscarriage, Sexual content, Violence, and Death of parent
  
  Moderate: Child abuse, Domestic abuse, Drug abuse, Forced institutionalization, Medical content, Medical trauma, and Pandemic/Epidemic
  
  Minor: Alcoholism, Drug use, Suicide, Toxic relationship, and Abandonment
  
  Notes on CWs:
  The author's kink is to punch/hit consenting individuals who identify as male, and then have some kind of sexual encounter with that person.
• 
  Morgan

  4.5
  
  I'm still processing this book so it's hard to provide a snappy capsule review. The book is so expansive, so deep, so rich with ideas, that even the idea of writing a full review is daunting to me. That's a huge boon for readers, who will find this volume an invaluable resource, but it makes it a little harder to understand it as an object. I tend to prefer essay collections (and memoirs) that are more compact and based around a central idea, but I'm also grateful that so much of Hedva's work has been anthologized here. On the whole I'd definitely rather have this book, even if it does at times feel shaggy. People will be discovering these essays for many years to come.
  
  Part of the benefit of the structure is, of course, that even if every piece doesn't speak to or work for you, there's plenty that will. I appreciated the combination of essays or pieces that had a very practical application (like the disability rider) and essays focused on Hedva's personal experiences (I was especially moved by their writing on the death of their mother). A few pieces did feel too long, and oddly despite being nonbinary — and writing very well about their own experience of gender dysphoria and presentation — Hedva sometimes falls into overly predictable gendered categories when writing more generally. There are a few odd slip-ups, too, in this vein: in one essay, for instance, they write that the male protagonists of films like "Taxi Driver" are lionized while female maniacs in fiction are demonized, which makes no sense if you've actually seen "Taxi Driver" or the other films they site. And in one essay on Sontag, I think there's a little too much presentism in the writing about Sontag's work.
  
  But these are relatively small complaints. For the most part, I found reading Hedva's writing about disability and the societal structures that work to crush disabled people galvanizing. I also appreciated that this wasn't a memoir, as they point out: I have loved a lot of disability memoirs and will read many more, but the essay form allows Hedva to write in a more theoretical or more polemical mode depending on the aim of the piece. As I said, I didn't love every essay here, and some of them weren't really relevant to my experience, but obviously that's not required. I think a lot of people will find this book a salve, and I hope others learn from it.
• 
  Charlie + Barbie - itsbarbieparis

  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.
• 
  Mac Yunus

  I enjoyed reading the overview of "How to Tell When We Will Die" and believe it has great potential. I have a few insights that could enhance the story and overall impact. Feel free to reach out to me at [email protected] to talk about it more.
• 
  Ailey | Bisexual Bookshelf

  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).
• 
  Roo

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