I’ve had an unusual burst of more-than-my-average energy this last couple days so I committed to a mutual aid ask of bringing firewood to a couple of encampments here in Minneapolis this morning. The kind of task that is often harder for someone with long work hours to do. Me, on the other hand? I have an abundance of time so this is the kind of contribution I can make once and a while. A few people with spare money sent it to me to use to buy the firewood knowing that I would then distribute it. They had the money but not the time; I had the time but not the money- this is how we get things done. While I was driving around town, I was listening to Care Work because what goes better with mutual aid and community care than disability justice?
Chapter 13 of Care Work is entitled “So Much Time in Bed: a letter to Gloria Anzaldua on chronic illness, Coatlicue, and creativity” and it’s a letter from the author Leah to Gloria Anzaldua (perhaps? best known for her contributions as editor to This Bridge Called My Back). This particular letter-essay is, to me, a bit more poetic and lyrical than some of the other essays in Care Work in a way that really moves me and also linked with something else in my brain that I’ve been marinating on and want to share with y’all.
“How do we say that my hurting body in bed sucks and is also a beautiful ability to write for hours because I can’t hold down a 9-to-5 even if I wanted to? And part of the beauty is our access to dream time. Time for the stories to grow. Time that is not logical, rational, clock time, punch-the-clock time.”
leah Lakshmi Piepzna-samarasinha
Leah Lakshmi Piepzna-Samarasinha meditates on how being chronically ill and disabled means she spends a lot of time in bed: “chronic illness sucks. But, oh, there is the secret bliss of bed!”. As she explains, “I can’t work a 9-to-5… but bed time means lots of dreamtime“. Dreamtime. Dream time is something perhaps abled people can’t access in the same way because of the nature of holding down a 9-to-5 job. Again from Leah: “Our sickness is a road out from the 9-to-5, trading labor for cash life. Our bodies can’t work like that, so they dream instead. Steal time for dreams, poetry, world changing on that thin edge of barbwire. We dream a way through the teeth of the dragon of whitecapitalistpatriarchial amerika.” I felt a deep sense of recognition in this piece as a chronically ill person who is now disabled by those chronic illnesses and it linked directly to this idea in my own head: disabled people are the keepers. This is something I explored on Twitter a few months ago but still haven’t found the depth of language to satisfy me on how holy this role is.
In my experience in movement, community care, and mutual aid work, it is the disabled people who are the keepers. They’re the keepers of our social justice movements, our networks, our community care, our information sharing, our stories, our futures. They’re the people who are holding the intangible parts together. They’re (we’re?) the ones who hold the ball and keep momentum going. They’re the ones up in the night and making shit happen during the day while others work. They’re the thinkers and the dreamers. They’re (we’re?) the ones coordinating supports, feeding people, organizing climate related mutual aid, demanding the most inclusive spaces for gatherings and conferences. They’re (we’re?) the ones who are following stories to make sure they don’t get buried. The role of the keeper, the holder of the collective work and ethos, the container of hopes and dreams and principled struggle… what a sacred role. And it’s a role that often cannot be held by someone who is working a conventional job or jobs because it requires access to dream time that disabled people often have an abundance of as a result of being pushed out of the workforce and, often, society at large. Perhaps the fact that some of the most sacred roles in our most communal and radical efforts are best held by people society would have you discard makes us recognize our own internalized ableism.
Being chronically ill does often suck. But I can attest to the ways that, not trying to drag myself through a job I can’t do, has opened up oceans of dreams in me. I have enough time to daydream; something I couldn’t say before I was disabled by Long Covid. I have enough time to stretch my imagination, reach to the farthest edges of the universe, and call back what I see there to our current world so that we might build a new future. I have access to dream time now; and it’s a gift that many disabled people share with us if only we’d value that role more.
There is so so much more to say. Every line in just this letter-essay alone is overflowing with wisdom and possibility. More thoughts to come.