it's about time
July 15, 2021 4:18 PM   Subscribe

I am looking for resources (books, blog posts, communities, honestly whatever) on planning a life with a disability and coming to accept that that life will look different from what you thought growing up; overcoming internal ableism and accepting your limitations; shaping a life that accommodates your disability, in the workplace as well as at home. I am also interested in reading about how people live with chronic pain or fatigue and how they manage their perspective on it. Thank you!
posted by snerson to Religion & Philosophy (3 answers total) 38 users marked this as a favorite
 
It is indeed about time.

Books that helped me very practically with this process were How to be Sick and How to Live Well with Chronic Pain and Illness, both by Toni Bernhard.

Some others:

* The Sound of a Wild Snail Eating helped me be less frustrated by fatigue.
* A Life Less Convenient (Jennifer Clare Burke) helped me understand better how to be a romantic partner as a sick person.
* The Body in Pain gave me new tools to interpret my experience and permission to get the help I needed
* Not Tonight (Joanna Kempner) is migraine specific but learning about illness through a sociological lens and the construction of legitimacy was helpful for accepting my illness and communicating with other people about it.
* Self as other: reflections on self care is a zine that might have saved my life https://crimethinc.com/zines/self-as-other
* learning about the medical and social models of disability and the ways both do and do not help me
* The documentary Crip Camp (available on Netflix I think still?)
posted by congen at 6:47 PM on July 15, 2021 [11 favorites]


Jessica Kelgren-Fozard is a YouTuber with several disabilities, including chronic pain and fatigue. Sometimes she makes educational videos, and sometimes she just talks about her life. Her recent videos are more baby-focused, but those do touch on disability issues as well. She was disabled in her childhood, and she has said that she has a fuller life than she thought she could have back then, so she has a somewhat different experience. She definitely covers the other topics you list, except that she is unable to work outside the home.
posted by Comet Bug at 7:32 PM on July 15, 2021 [4 favorites]


I love this short video My Body Doesn't Oppress Me, Society Does as a way of reframing the world.

You might also find the work of Sins Invalid powerful and resonant. There's a documentary too (available via Kanopy if your public library has a subscription).
posted by spamandkimchi at 1:13 PM on July 19, 2021 [1 favorite]


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