Care Work: Dreaming Disability Justice by Leah Lakshmi Piepzna-Samarasinha (Arsenal Pulp Press, 2018)
★★★★★
A collection of essays about disability justice—a movement that centers the lives and leadership of sick and disabled queer, trans, Black, and brown people—by a queer, disabled femme of color and abuse survivor.
Well, this woke me the fuck up. I think the easiest way for me to talk about this book is to relay a conversation that I had with my friend L., and the thoughts that were going through my head—informed by my reading—as we chatted.
L: “So I watched this Try Guys video where they put on a weighted suit and crappy goggles and earplugs that were supposed to simulate the experience of being old for a day.”
Me: You don’t have to be old to be deal with sight, hearing, or mobility impairments—sick and disabled people do all the time. Plus, unlike many identities, “disabled” is an identity that anyone can acquire: a person can become disabled at any time. This performance of disability reminds me of blackface/brownface—“my skin color isn’t an accessory you can put on and take off.”
L: “They were surprised at how dangerous things like uneven pavement could be.”
Me: Yes—and by fixing things like these, we would improve accessibility for all. Aren’t curb cuts the darlings of the urban planning world? [Edit: They didn't used to be.] They help people in wheelchairs, but also people pushing strollers, or people using hand trucks. Piepzna-Samarasinha has a story about a theater that builds and then destroys a ramp from the green room to the stage, depriving “everyone—people in chairs, people using canes, and normals who just needed to haul a lot of props onstage the way, you know, you usually have to in theater.”
L: “They said the experience made them realize how your body really is an investment.”
Me: At the same time, what does it look like for being broken, and going slow, to be okay societally? As Piepzna-Samarasinha writes, “Our bodies don’t need to be cured or fixed into normalcy to be valuable.”
L: “The video inspired me to work out and get stronger. Because who wants to be the girl who can’t keep up with her boyfriend on a hike?”
Me: One of the loveliest gifts of Care Work is Piepzna-Samarasinha’s description of cross-disability solidarity. In the face of a daunting, exhausting task—organizing and attending a multi-day conference—she and her colleagues call on the Black and brown disabled queers they know to show up for each other.
We didn’t just survive the conference—we made powerful community. Committed to leaving no one behind, we rolled through the conference in a big, slow group of wheelchair users, cane users, and slow-moving people. Instead of the classic able-bodied conference experience most of us were used to, where able-bodied people walked at their able-bodied rate and didn’t notice we were two blocks behind, or nowhere, we walked as slow as the slowest person and refused to abandon each other. People got out of the way.
So what do care, love, and justice look like when we fully commit to going only as slow as the slowest person?
I was disappointed, but not surprised, that a conversation that I otherwise wouldn’t have thought twice about was chock-full of ableist notions (that, to be fair to L., I had also internalized).
These were not my only uncomfortable learnings over the course of reading. In the especially incisive essay “Not Over It, Not Fixed, and Living a Life Worth Living: Towards an Anti-Ableist Vision of Survivorhood,” Piepzna-Samarasinha describes how, in the deficiency model of disability, “the only good crip is a cured crip, one who has failed to exist.” She also shows how the related ableist expectation that an abuse survivor “get over” their trauma—and become “a survivor who [has] no visible signs of survivorhood”—infects survivor dialogues:
There’s nothing wrong with wanting less pain, or a different experience of it. There’s nothing wrong with wanting to transform generations of passed-down trauma. But what gets more complicated is when those desires bleed into the ableist model of cure that’s the only model most of us have for having more ease and less pain. This model and its harsh binary of successful and fixed or broken and fucked is part of what contributes to suicidality and struggle in long-term survivors. I’ve seen survivors, including myself, struggle with feelings of failure and self-hatred when we’re thirty, forty, fifty, sixty, and older and we’re still triggered, grieving, and remembering—when we haven’t reached that mythic “cured place.”
In “Cripping the Apocalypse: Some of My Wild Disability Justice Dreams,” she critiques the nonprofit industrial complex:
Disability justice, when it’s really happening, is too messy and wild to really fit into traditional movement and nonprofit industrial complex structures, because our bodies and minds are too wild to fit into those structures. Which is no surprise, because nonprofits, while created in the ’60s to manage dissent, in many ways overlap with “charities”—the network of well-meaning institutions designed on purpose to lock up, institutionalize, and “help the handicapped.” Foundations have rarely ever given disabled people money to run our own shit. Nonprofits need us as clients and get nervous about us running the show. Disability justice means the show has to change—or get out of the way.
One story that Piepzna-Samarasinha relates in “Two or Three Things I know for Sure about Femmes and Suicide: A Love Letter” is frankly horrifying. During a period she calls “the femme suicide years,” she learns of Jerika Bolen, a fourteen-year-old Black, queer, disabled femme person with spinal muscular atrophy 2 who publicly announces her plan to commit suicide.
[Bolen] would go into hospice and ask them to shut off her ventilator, actions the media named as “brave” and “inspirational.” She said that she didn’t have a future, that she of course wouldn’t be able to dance or date or love, so she was choosing to die, and her announcement of her planned public suicide was cheered on by her white adoptive family and mostly white rural farming community of Appleton, Wisconsin.
I vaguely remembered hearing about this story when it was published, but had little political consciousness then. I was horrified to see it anew, through Piepzna-Samarasinha’s lens of suicide as “a weapon of the abuser and the colonizer, a bomb they plant in our bodies to try and kill us.” It did not occur to me until hearing this story recontextualized that it might have been political, radical, brave, if Bolen had “[fought] for the systemic supports that would let her live well”—fought “to survive and live.”
By the time I read the final essay, “Crip Lineages, Crip Futures: A Conversation with Stacey Milbern,” I was simmering with a broad mix of anger, compassion, and hope. When Milbern, who was raised evangelical Christian, shared a story from her childhood—
It really impacted my sense of self to hear that I was broken and unlovable by God because I was disabled and, then later, queer. Some people legit thought I was disabled because of some sin my mom must have done. I stopped being the same kind of Christian as my parents when church bullies told me I hadn’t been healed by God yet because I “didn’t believe enough.” We were all thirteen years old.
—it was extremely difficult to see the events described as anything other than injustice and hate. I’m gutted to learn that Milbern has since died.
Easily five stars and one of the best books I have ever read. Care Work contains immense wealth, and illustrates exactly how “justice is what love looks like in public” (Cornel West). I leave it feeling certain any organizing I’m involved in must center crip leadership and the leadership of those most impacted.