Care Work: Dreaming Disability Justice doesn’t strike me as a collection of essays, a 101 workbook for aspiring allies, and definitely not a memoir — but a dream. In the movements where writer and activist Leah Lakshmi Piepzna-Samarasinha incubated these dreams, the QTBIPOC femme-led sick, Deaf, and disabled justice work, doing and dreaming are not separate things. Especially for QTBIPOC disabled folks who are constantly coming up with revolutionary hacks to living in a wholly ableist, saneist, and determinedly inaccessible society, and who don’t really have the luxury of expecting anyone to show up for us, that some skills we’ve garnered along the way are both emergent and imagined shouldn’t come as a surprise. But I’d never seen that history, that science, archived and shared as a gift like this.
“We are moving from a model that gasps at our scars to one that wants to learn as much from them as possible.”
Disability justice acknowledges that civil rights for disabled folks is important, but that relying solely on the state to care for us doesn’t always work because care is not really what the medical industrial complex is good at or what any nation state is designed to do. It’s also aware that working within overwhelmingly white cishet disability rights groups is not cute, at the very least, and impossible at worst. The book is a capsule of Piepzna-Samarasinha’s experiences in disability justice work and care collectives in a handful of cities across Turtle Island, as well as online. Through these memories, she gives us an honest look at the circumstances that led up to folks naming and claiming this work, the stumbles and struggles of pulling it off, and introduces (some of) us to crip-positive care models that can — and must — shift to shape the conditions in which Deaf, chronically ill, and disabled folks are trying to live in.
“We won’t be grateful to be included; we will want to set the agenda. And what our leadership looks like might include long sick or crazy leaves, being nuts in public, or needing to empty an ostomy bag and being on Vicodin at work. It is slow. It’s people even the most social justice-minded abled folks stare at or get freaked out by. It looks like what many mainstream abled people have been taught to think of as failure.”
Care Work spans worlds of thought, from a brief history of the healing justice movement to a somewhat-sexy chapter on Gloria Anzaldúa and the business of being bed-ridden, to tips on how to be a traveling crip performer, and the notion of “crip doulas,” disabled folks who help the newly-crip adapt to their bodies, lives, and worlds. Something I didn’t know I needed but desperately longed for almost a decade ago.
“The transition itself, of becoming disabled or moving along the ability spectrum, is frequently invisibilized, to the point that these changes do not even have a name. Of course there aren’t yet words for this. Without crip intervention, we are frequently left alone to figure out how to be in our bodyminds and in this ableist world.”
There is a chapter on lust, on cripping sexual violence, talk of suicidality throughout, and thinking beyond “cure” narratives. A true map, it never says: this is the way to go, what to do. Instead, Piepzna-Samarasinha tells us what has worked for some people at some times, what could be done better, and also what went super wrong, all framed in a way in which to say, finding your own way can be empowering, but it’s going be real as fuck. There is no failing, just more trying, and more rest.
“Pro-tip #40: Don’t assume that non-crips will get it the first time you say what your needs are even if they’re going, “Oh yes” and being real polite. Their, “Oh, there’s no stairs,” is often a flight of stairs.”
I read the bulk of it on the living room floor upon which I do everything, because my disabilities make sitting down and lying on beds excruciating and prohibitive, but standing is also challenging because of my various knee and leg conditions, which are only progressing. Reading it, in a way really was a dream — in which my life and body were considered normal, where ableism making you want to die is legit, and holding bitterness and resentment at the inaccessibility of the most radical spaces, at our broken bodies, at lives that seem to shift only from one crisis to another, is all like, totally the norm.
“There’s also crip bitterness—something very few abled people understand that works to isolate us, because they can’t deal with how “harsh” or “depressing” we are to be around and quietly stop working with us.”
I get little of that affirmation in real life and some more of it online, so having the language to name what so often festers in shame and isolation made tangible in ink on paper is just one way reading this book made dreaming disability justice more of a reality for me.