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healthcare bureaucrat in philly, v adhd, orthodox jew, ect ect, im love my wife



celsient
@celsient

does anyone have suggestions for books about disability, specifically living with and processing it? i got long covid in march '22 (and already had chronic pain + some cognitive things) and it's completely destroyed my memory, my ability to focus (additionally to adhd), my ability to think quickly, my energy, the amount of information i can process, etc etc etc. the brainfog is unbearable.

i've been reading a lot over the past few months because physical paper books don't make me overwhelmed like other things do, and i'd love some recommendations for touchstone reads about disability, disability theory, and whatever else people have found useful.

it took me a long time to realise i was disabled and a longer time to properly come to terms with the extent, and i'd really like to read some good literature to avoid any of the thought-process pitfalls that would result in me being harmful to myself and to other people.

thank you very much

(edit: thanks again!! i will slowly be making my way through the suggestions)


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in reply to @celsient's post:

Exile and Pride: Disability, Queerness, and Liberation by Eli Clare. Not sure how relevant it will be to your situation, and I only read like half of it in univeraity, but it was very good.

it's more about ADHD iirc, but probably still applies, how to keep house while drowning

there's also a podcast series, No End in Sight, and a community around it, for chronic illness people with similar mystery/neglected illnesses like me/cfs and the various ehlers danlos-es etc

another recent one is also Doing Harm which is a book about systematic failings of the medical system especially around women, but also in general.

also? you may need to sleep a lot at first to get the memory stuff to come back -- I don't have covid but Iv'e had similar things for a decade prior, and I kept doing too much which meant my mental tank was always completely empty, which causes it to 'refill' slower.

I don't usually recommend the US military, but they have a really, really accessible-but-detailed section on the mechanics of sleep over in FM 7-22 (PDF), ctrl+f to "sleep readiness"

the section above sleep readiness is about spiritual practices and religion and hhh omg reading an army manual written in their brand of Very specific and methodically detailed but it's about something as non specific and nebulous as "how to have religion" is, fascinating.

Surviving and Thriving with an Invisible Chronic Illness was a book I read shortly after being diagnosed with POTS and Hashimotos around the same time. It has been a while since I read the book, but I remember liking it

every time I read an excerpt from the book "Health Communism" it rocks my world. I struggle to read/listen to anything longform, but the essays that draw on this book have helped me a lot

I also like Jesse Meadows' newsletter Sluggish (on substack)

You might enjoy Crip Theory: Cultural Signs of Queerness and Disability by Robert McRuer. It's focused on finding the commonalities & intersections of disability theory & queer theory, and particularly on building space for "bad cripples" (i.e. people who are disabled and do things that are Bad For You™, like smoking or being gay) using that intersection.

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