When I think of care and pleasure, I think of:
• Me and my partner hanging out in bed during a “bed day,” constantly communicating about what hurts and what positions our bodies need to be in, offering to make each other tea or bringing over the chips. Spooning, reading, telling stories, making out and napping, in the middle of a massive pillow pile. We aren’t trying to cram ourselves into an able-bodied vision of what sexy or a relationship is; it’s totally OK for us to rest, chill, care for ourselves and each other. Our care needs are not some gross secret walled off from date night.
• Or my friend whose multi-decade-old disability care collective helps her get on the toilet, shower, and dress every day, and people laugh, gossip, hang out, and have a great time—it’s the place to be! When I show a video that she made about her collective to the care webs workshop I teach, there’s usually awed silence. Afterward, someone always says, “I’ve never seen someone be so joyful and unashamed while getting help getting on the toilet.”
• Or last weekend, when two disabled femme BIPOC [Black, Indigenous and People of Color] friends and I went on an accessible hike and had a blast. The care that allowed this joyful-ass space to happen included everything from one friend getting a guidebook of accessible hikes and researching routes to the ways we strategized together when all of a sudden the trail had no curb cuts, to our stopping every five minutes to take a breath (because one of us has lung tumors and one of us was using a manual wheelchair that day and I have asthma), to how my friends were chill when I got hit with sudden food poisoning and had to squat behind a not-so-private tree and have a really bad shit as bikes whizzed by. “This is where access intimacy gets real!” I yelled, and we all laughed.
These are a few examples of the many joyful intersections of disability justice, care, and pleasure that I’m really fucking lucky to have in my life. But I know that for most people, the words “care” and “pleasure” can’t even be in the same sentence. We’re all soaking in ableism’s hatred of bodies that have needs, and we’re given a really shitty choice: either have no needs and get to have autonomy, dignity, and control over your life or admit you need care and lose all of the above.
Also in the mix is the fact that some of us come from immigrant, Black, and Brown communities and have worked shitty, badly paid caregiving jobs for years, which hasn’t made giving or receiving care uncomplicated. Many of us have been taught that needing care is a weakness we cannot afford and have survived through needing absolutely nothing. A lot of our communities still look down on disability or mental health as weakness and stigma, and we know that if we show ours, we can lose a lot—dates, credibility, social capital, jobs, kids. It’s no wonder I’ve heard many friends say, “I could never show my partner(s) that disability, illness, mental health thing, it’s not sexy, it’s too embarrassing.”
For my part, I spent decades curating myself so only my “normal” parts showed—on dates, in the social world—and never showed anyone my damn care needs. I did it because it was the best way I knew to survive. But it also made me deeply believe that those parts were disgusting and unlovable, which meant that I was, too.
For much of the past decade, I have been part of a disability justice community whose members have dreamed new ways of creating and accepting care as a pleasure, not a chore, and experimented with creating joyful spaces where we care for each other as queer, disabled people of color. I’m proud of the work we’ve done and the impact it has had. I also want to complicate it. There can be nothing more badass than a bunch of crips loving and caring for each other.
And community isn’t utopia: We can fuck each other over or just be too exhausted or mad to be there, and some of us don’t have community at all. Care isn’t always orgasmically pleasurable: People need to be able to get what we need and go to the bathroom whether or not it feels like a dance party. I’ve heard plenty of folks who work with personal care attendants say that they don’t want their care workers to be friends—they want them to be professionals who get paid well and treat them right, where there are labor laws and mutual respect.
I want there to be a diversity of care tactics. And I want everyone to be able to create wildly intimate, healing relationships where your care needs are present in the room, not crammed in the garbage. I want everyone to have access to this joyful, dangerous, wide-open pleasure, because it’s the vulnerable strength we all deserve.
This excerpt from Pleasure Activism: The Politics of Feeling Good, edited by adrienne maree brown (2019 AK Press) appears here by permission of the author, editor, and publisher.
Leah Lakshmi Piepzna-Samarasinha is the author of Care Work: Dreaming Disability Justice, Dirty River: A Queer Femme of Color Dreaming Her Way Home (short-listed for the Lambda and Publishing Triangle Awards), Bodymap, Love Cake (Lambda Literary Award winner) and co-editor of The Revolution Starts At Home: Confronting Intimate Violence in Activist Communities. She is a lead artist with Sins Invalid.