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

challenging emotional informative inspiring tense medium-paced

5.0

I am more a sound and movement type of person, so writting written reviews can be quite hard for me, but here go some points that got me in this amazing book: 

• “Pain is the price I pay to have such experiences” this is what I tell people when they ask me how can I do certain things with my conditions. I choose the things I want to do weighting how much I want to do them/ need to do them and the pain/ sickness they will cause. is always a do and pay game. That i need to take into account always how much time and resources I will need to recover from every activity. This also intertwines with the society difficulty on separating the notions of capacity and capability, I can be capable of doing something, but not have the capacity to do it now.

• We lost the sense of community and mutual help, this is something I have been thinking about a lot, and reflecting in my daily interactions. And with this we dont see care as an act we do together but as a transaction. So we dont see the benefit that helping other as on the community (that will in the end have on us)

• Why do we need ableism, this book asks the question “why does society need ableism?” Does it make us feel better? Is it the fixed midset of this society that makes us believe that? Is it the believe of productivity, imposed to us by a capitalist society? I haven’t come to a conclusion. 

• Hedva also points out how a lot of times manifestations and social events are not access to disabled folks. This has affected me directly, i haven’t been able to go to a lot of manifestations that I wanted to go cus, they are not accessible to me, this affects not only us , the people that can not attend, but also the broad society, that misses the input and perspective, of the disabled community on social relevant topics (like lgbtqia+ rights, reproductive rights and housing crisis)

• In one chapter, hedva recounts her interactions with a doctor, that wanted to know how to best provide care for the disabled community. This is also a topic really personal to me, being a neurodivergent person, that studied neuropsychology, and is thinking on the possibility of being a clinical neuropsychologist, how could I, knowing the personal experience of autistic person, nest provide care for other autistic and neurodivergent folks?

• The book also makes us reflect on the different views that the society has on mental illness in women vs men. And i would like to extend this to mental illness when the person is seen as productive / high status vs not. If your mania makes you be  more productive in the eyes of the society , then is seen as good, compared with a depression that makes you “work less” 

In the end once again, I fully connect with hedva’s writting, as a person that is also queer, autistic, disabled and chronically ill, they writting makes me feel seen at a whole other level
Thank you so much netgalley for this ARC.