Care is Direct Action

by Ella Grim

art by Idil Sahin

I am writing this for you with aching hands.

In the past year, my body has begun to very rapidly unravel. I fall asleep and wake up in pain. I’ve watched my muscles atrophy. My peripheral nerves are deteriorating at my hips and elbows, sending shooting pain down my limbs. Pain nestles in every joint of every finger of both of my hands. Deep fatigue has settled into my body like tacky dust; I rarely feel rested or wake up alert. I forget my keys, my ID, the name of the book I am reading, the name of the person across from me who just introduced themself for the third time. The 0.5 mile walk from my apartment to the dining hall has become an epic trek. There are more and more days I don’t have the spoons to make it there at all (1). So many things I love are slipping out of reach: canoe trips, dancing, writing poems out by hand in my notebooks, lifting trays of metal type in the print shop, long walks with friends. 

Eight doctors have given up on me. It’s a different kind of pain to have even the smartest and most caring providers look me in the eyes and say I have no idea what is wrong with you. I keep getting vague diagnoses: an autoimmune disorder, chronic mold illness, weirdly shaped elbows, long COVID. So far, nothing has reversed or alleviated the pain and exhaustion. 

Most people don’t know how to respond to disclosures of pain like this. Platitudes, no matter how well intentioned, usually make me feel more frustrated than validated. Frustrated that I can’t find the words I need to adequately convey the sensations that rock through my body day and night so that other people can get it, really get it. What kind of poet can’t find adequate metaphors for corporeal sensation? Sometimes I swallow down the pain because I don’t want to freak people out. I have younger friends and mentees who come to me for reassurance, for calm in the chaos, because I have a level head and a big heart and a lot of capacity to listen and advise. I don’t want this big, impossible, very scary thing I live with now to detract from love woes and little triumphs and peoples’ need to be fed a meal and reminded that someone cares about them. 

I know that vulnerability works best as a two way street, but opening up about this is fraught. Sometimes, I share about the reality of my pain and people pull away, or the void of incomprehension starts to open between us, making it hard to sustain those relationships. I’ve started to butt up against some difficult questions lately. How much care is too much to expect, or to ask for? Even when the care is there — gentle, abundant, and communal — can it make any sort of dent in pain like this? What does one do when the needs of the body in order for it to leave the house conflict with late night social events or, more pressingly, late night organizing meetings where attendance is a prerequisite for people trusting you to do movement work? 

I don’t have tidy answers to these questions. But they feel pressing to me in this moment, and not only because my body is coming undone. We’re literally watching the world as we know it fray apart in front of us, from devastating climate disasters and new diseases to genocides fueled by imperialist agendas and the rise of fascist governments globally. At Dartmouth, we’ve witnessed a rapid unraveling of trust and collaboration between administrators and concerned students under President Beilock, peaking during the May 1st Palestine protest and subsequent arrest of 89 students, faculty, staff, and community members by armed state riot police on the Green. And I’ve been witnessing firsthand a deep-seated burnout among student organizers, fueled in part by Dartmouth’s crackdown on protesting and in part by poor internal structures and group dynamics. We need to be asking big questions about care right now, about what it really means, how we can do it well, and why it matters so much for our survival, as people, as movements, and as humanity.

Self-Care is a Capitalist Myth

In the past year, I have had to aggressively build up my toolkit of coping mechanisms for when my body stops working well. These techniques are inadequate at worst and temporary at best. I can “self-care” to the moon and back and still be in unbearable pain. A new doctor recently remarked that I seem to be doing every holistic thing I could be doing to try to manage pain. I could only nod, but I wanted to ask, So why do I still hurt so badly? 

We live in a culture that equates wellness with micro, finite acts of physical or emotional tending. This is a function of capitalism. Neoliberalism, the political and economic project characterized by free markets that emerged in the United States in the 1970s, depends on the “‘commodification of everything,’ not only [by] making markets for things that were once held in common (the new enclosures), but also [by] creating needs and desires where none previously existed. (2)” The neoliberal economy wants to sell us wellness — or more specifically, sell us things we don’t need under the auspices that they will make us happier and healthier, or make the breakneck pace of life under capitalism a little more bearable. “Self-care” has come to mean the small things we do or buy to try to address the symptoms — loneliness, detachment, physical neglect, and pain — that result from the economic and cultural systems under which we live.

This mystery illness — likely some understudied, COVID-19–induced, inflammatory autoimmune condition — has eroded my belief in what “self care” can actually accomplish. No amount of tea or painkillers or naps can fix what is wrong with my body. I don’t want a college-branded fidget toy or another meditation app. I want an accessible campus. I want the elevator to work. I want the access van to stop dropping my scheduled rides. I want my health insurance to stop telling me I need to drive an hour and a half for in-network acupuncture. I want to stay home on the days I hurt the most, without worrying about the consequences to my grades or my professor’s view of my diligence.

Pain is radicalizing. Coming up against the limits of self-care has helped me see that the real solution to the harmful systems we face — disabled and non-disabled folks alike — is to reimagine and transform those systems. 

One of the first people to write about radical self-care was Black feminist activist Audre Lorde. Lorde’s self-care is a far cry from what we commonly understand it as today. In “A Burst of Light,” an essay of collected journal entries about living with cancer, Lorde writes, “I had to examine, in my dreams as well as in my immune-function tests, the devastating effects of overextensions. Overextending myself is not stretching myself. I had to accept how difficult it is to monitor the different. [...] Caring for myself is not self-indulgence, it is self-preservation, and that is an act of political warfare. (3)”

Lorde’s definition encapsulates much of what I’ve experienced lately. Self-care isn’t an indulgence. It’s the things I do so I can make it to class, or to work, or to the organizing meeting. It’s what I do so I don’t entirely succumb to the mental toll of losing my ability to do many of the things I love. It’s what I do to make it out of bed in the morning, and what I do when even that feels impossible. I feel like a fish on ice. Self care will not bring me back to life, but it might stop the decay for a while.

Community Care is Power

Neoliberal capitalism often strips out mechanisms for meeting needs that were historically rooted in community or commons. Think about, for example, the way colonialism and the medical industrial complex have suppressed community knowledge of medicinal herbs, and restricted access to land on which to forage them. Or the way that our busy, disconnected lives make it hard to slow down and care for a loved one who gets sick without financial, social, or employment stress. [maybe another or a better example]?

I talk a lot about care, specifically community care, and even more specifically, the sort of caring community we’ve built in Spare Rib. Over the past four years, I’ve watched the space blossom into one of deep and radical care. Sometimes that looks like bringing a sick Spribber food, tea, and medicine for days in a row. Sometimes, it's checking in on someone who has missed deadlines in a way that is humanizing and prioritizes their mental health. It's the way we have a bin of communal Tylenol and tampons and laundry soap in our office. It looks like greeting new faces in our space and having an older member check in to learn their names and get them onboarded. Sometimes it’s just feeding people dinner.

Our care is in the way that people mask in the space during exec meetings without anyone having to ask because it’s a good community care practice, but also because they know that for me, catching a cold or the flu means being bed bound for a week, or worse. Spare Rib is still the only space on campus I’ve been in where this disability justice practice has been implemented. 

Our community care looks like us finding each other on the Green on May 1st, 2024. It looks like a team of 10 staff members manning an Instagram Live video of the arrests for over 2 hours, switching off who was holding the phone, scrambling to find chargers, giving hugs for grounding and comfort, singing and chanting together, deciding together where and when to move to keep everyone as safe as possible while documenting the situation. It looks like us finding even more staff members after the protest was over, just to make sure everyone got home safe. It looked like following up with arrested friends and staff members to make sure they had support in the weeks and days that followed. It looks like us sitting together at Brave Space. It looks like a group of Spribbers coming to pull me away from Brave Space when I was burnt out from being there all day and taking me down to the river to sit and listen to the birds and the waves. 

If you take only one thing away from this article, I want it to be this: our care for each other is our greatest power. Care is the basis of community, and community the basis of change (4). Bringing your friend soup or wearing a mask at meetings or making someone feel welcome in a new space may seem small or insignificant, but those small acts of care, practiced and repeated, make larger acts of care easier. They help rewire our brain from the scarcity mindset imposed by capitalism, orienting us instead toward community, reciprocity, and abundance (5).

Maanasi, one of Spare Rib’s founding visionaries, always reminds me that our magazine is our method; the outcome of that method is the community of care we build together, emergent from our shared work and expansive beyond it. If the magazine ever dies — and it may, or there might be a moment when another project necessarily supersedes it — my hope for you is that the community we have built together and sustained remains, always dynamic and shifting, but rooted in care. Because care is direct action. 

This phrase — Care is Direct Action — came up during our termly Rib Talks during 24F. We did a visioning and brainstorming session, ending the event with a whiteboard full of ideas and reflections. So often, radical care is devalued by our society and on this campus, especially by some other activist circles. (These are also the circles with the deepest burnout, dysfunction, attrition, and lack of good self-care practices). This devaluation is deeply tied to both the feminization of care and to capitalism’s devaluation of “unproductive” labor, which is also deeply feminized. When we think of direct action, we think about action where folks put their bodies on the line to push for change. We don’t think about the team of journalists documenting the situation. We don’t think about the small things we do for sick friends, or disabled friends, or sad friends to get them through the day — even though those things are often a matter of life and death, and that are literal life-saving actions. 

There are several different definitions of direct action, but one I like is: “a form of action where people use their power to directly achieve political goals. (6)” 

I live in a body that can no longer go to the protest unless there’s a place for me to sit down. My direct action looks different now, but it’s still tied to a political goal — one of reworking our communities into places that are livable and joyful. My power is now rooted in my care.

Grief, Care, Connection 

In Old English, “care” meant “to sorrow, to grieve, to lament.” A secondary meaning was “to be anxious, or to feel concern. (7)” The more current definition —“to have a regard, liking, or inclination” for something — has lost so much depth. 

I grieve the energy and capacity I had before chronic illness. 

I lament the things I loved to do but now may never be able to do. 

I feel anxious about the prospect of finding a job and building a sustainable life in this new body of mine. 

I feel anxious about cuts to public assistance programs for disabled people, about the corporate nature of health insurance in this country, about the dearth of true care within the medical industrial complex. 

I feel concern about the state of our world. About the rise of facism in the U.S. and abroad that aims to squash the rights of disabled people. I dread the next pandemic, the avian flu, the coming undervaccination and resurgence of deadly but preventable diseases that would certainly make my current medical conditions even more precarious. I dread the climate disaster we have inherited, that we will live and breathe for the rest of our lives, that disables and then creates conditions that disabled people must struggle to survive. 

I cried while writing this article. 

It was the first time I’ve ever cried while writing for Spare Rib. I’ve put the full extent of my body’s collapse into writing, and it hit me hard. I am resilient and tough, but I’m not unbreakable. 

I cry. I worry. I lament. I grieve. And I care.

And the radical care I have embraced as my body breaks down has deepened my commitment to our global movement for justice. 

Writing on what becoming disabled has taught them, disability justice theorist Joanna Hedva wrote, “Disability makes it impossible to ignore that we are ontologically dependent, knotted into each other and everything. (8)”  

I have found this true as well. I have been thrust somewhat rapidly and violently into a dysfunctional body, catalyzed by a pandemic everyone stopped taking seriously. I cannot help but draw links between the little disaster of my body and the much larger disasters occurring globally. I can’t help but think of the people in Occupied Palestine who are intentionally maimed by Israeli snipers because imposed debility takes away scrutiny from the State of Israel by lowering the death count while simultaneously limiting people’s ability to resist the occupation and tying them into a profit-driven medical system, often forever (9). I cannot help but think about the disabled folks trapped in hurricane flooding or wildfire smoke, unable to evacuate on their own. I think about the people who have lost or are about to lose their access to healthcare due to Trump’s shuttering of USAID and Congress’s drastic proposed cuts to Medicaid. 

All of these things are connected. And yes, I’m going to talk about capitalism again, and care. Because undergirding each of these disabling events — COVID-19, occupation and genocide, escalating natural disasters due to climate change, and cuts to life sustaining programs — is a focus on profit and power over community and care. As Hedva puts it, “[...] to stay alive, capitalism cannot be responsible for our care — its logic of exploitation requires that some of us die. For capitalism to support care would be the end of capitalism. (10)” This is a bold thought, and one sparkling with potential. 

What would it look like to not leave anyone behind? To not feed anyone to the machine of production & productivity & “worth”? To find ways to mitigate suffering and pain? 

If we lean into care in our communities and systems, can we start to slowly defang capitalism, ableism, and all the other forms of oppression that threaten our destruction?

References

1. Christine Miserandino, “The Spoon Theory,” 2003, www.butyoudontlooksick.com/the_spoon_theory.

2. Julie Guthman, “Neoliberalism and the Constitution of Contemporary Bodies,” The Fat Studies Reader ed. Esther Rothblum and Sondra Solovay, 187-196. New York, USA: New York University Press, 2009. https://doi.org/10.18574/nyu/9780814777435.003.0026 

3. Audre Lorde, “A Burst of Light: Living with Cancer,” in A Burst of Light and Other Essays, Ixia Press, 2017. ISBN 9780486818993.

4. See Octavia Butler, Parable of the Sower, 1993.

5. “Recognizing abundance rather than scarcity undermines an economy that thrives by creating unmet desires.” Robin Wall Kimmerer, “Allegiance To Gratitude,” in Braiding Sweetgrass, Milkweed Editions, 2013, page 111.

6. Seeds for Change, “What is Direct Action?” https://www.seedsforchange.org.uk/directaction 

7. Oxford English Dictionary, s.v. “care (v.),” June 2024, https://doi.org/10.1093/OED/9286555014.

8. Joanna Hedva, How to Tell When We Will Die, Hillman Grad Books, 2024, page 6.

9. Jasbir Puar, ““Will Not Let Die”: Debilitation and Inhuman Biopolitics in Palestine,” The Right To Maim, Duke University Press, 2017.

10. Hedva, How to Tell, 56.