“We were maybe not going to save the world, but we were going to save each other.¹”: How Disabled Mutual Aid Is Different Than Abled Mutual Aid
Leah Lakshmi Piepzna-Samarasinha
I want people to know that disabled people kept each other alive during COVID-19. We were keeping each other alive before COVID and we will continue to keep each other alive. But the ways we kept each other alive during COVID is nothing short of a heroic, epic battle, something there should be an epic movie about but probably won’t be. We also care for each other when we die. Even when we or the people we love die, the love we made through the care we created is not useless or wasted.
However, the ways we kept each other alive are often completely unintelligible and off the radar to abled people and neurotypical people when they think about mutual aid – that term that has gotten so popularized in the past 18 months, more so than I ever, ever imagined it would be.
If you’re reading this, maybe you don’t need me to tell you this. You’re already disabled, and you figured out ways to keep yourself and other disabled people alive every day since February 2020, and you still are, and you know what you’re doing.
But maybe you do need to hear it anyway. Because you need to know that what you do counts. What you do is real.
And maybe if you’re new to disabled anything, maybe all of this will be mind-blowing information.
Like every kind of oppressed people, disabled people are geniuses of staying alive despite everything. However, the kind of non-disabled “mutual aid” that got popularized during COVID didn’t always talk about disabled-specific ways of surviving.
When I think about disabled mutual aid, I think of a million examples of subtle, diverse forms of disabled survival work. Work that is mostly not seen as “real work.”
I remember the first few months of the pandemic. We were all so fucking scared. There was no good information out there. Even my doctor, who I usually trust, said that most people would get a mild cold and it would all blow over in a few months. Understandably, me and all the crip people I know didn’t trust the information that was out there. The voices on the radio and TV kept saying don’t worry, only the elderly and immunocompromised will die. We were the elderly and immunocompromised.
And many disabled, elderly, fat, immunocompromised and vulnerable people went to heroic measures to defend our communities and our selves. Organizing that was public and collective, like work by the Disability Justice Culture Club, who used the internet to create infographics that talked about sick and disabled COVID safety strategies and brought people together when we were really scared and isolated. And know your rights/ COVID safety and patient advocacy guides created by and sick, elder, fat and disabled people, like the Nobody is Disposable Coalition, and Fat Rose, created and shared crowd sourced information and ideas when people were terrified of medical rationing and also trying to get good info about how to stay safe specifically as disabled, fat and elder folks when mainstream sources just weren;t providing it. And: organizing that was more private, in all the everyday, word of mouth, not so public efforts to spread information, tools, scripts and safety strategies, spread crip to crip, in texts, phone calls, voice memos and online messages.
I remember the everyday flavor of our days in the pre-vaccine COVID times in disabled communities. The disabled survival work we did, the strategies we invented. We stayed up late researching what scientists were saying, reading every article and sharing them. So many of us reduced our contacts to the bare minimum, or zero. So many of us didn’t see or touch another human person for a year or more. Some still aren’t. In the first few months of COVID, I went on night walks so no one would be around to breathe on me, even with a mask on because we just didn’t know; when someone did walk toward me, I ran off the road and turned my head so I wouldn’t breathe in their outbreath. I wiped down every door knob, light switch and car handle with bleach or alcohol twice a day, so much so that my car still has a bleach stain down the side. We shared recipes for homemade hand sanitizer and where to get the fragrance free kind, shared it, made contact-free distro boxes for it on our blocks. We figured out ways to use our crip skills at navigating isolation–already highly polished from years of navigating crip isolation- to survive kind of living in an airlock for months. We innovated. All those Zoom crip dance parties and craft nights and hangouts and going deep into fandoms and leaving contact free baskets of extra veggies on the stoop, those were and are life saving crip mutual aid survival.
We spread the word about when Vogmask and other N95s equivalents went on sale, and bought them for each other in the ten minutes they were available before they sold out. Crips found medical fabric, sewed and mailed out masks to crips in other cities. I had three N95 masks, ones I’d already used a bunch, saved from fire season the year before. I used them sparingly on the rare occasions I left the house. There were no N95s for sale anywhere in North America and people were being scolded about masking at all, let alone using N95s. But months before the CDC would say JUST KIDDING, PLEASE MASK, me and every crip I knew were wearing masks whenever we had to go into a grocery store or any other crucial inside place. People edged away from us. They thought we were sick, they thought we were crazy. They were right, but not in the way they thought. We were sick, crazy people who were determined to stay alive.
Some days it felt like half of what I did in a day was engage in convos with folks on social media sharing research (like – “The Risks: Know Them, Avoid Them,” a crucial piece of early popular research by epidemiologist Erin Bronage about aerosol transmission) about how masking was a good, lifesaving choice for everybody, but ESPECIALLY for other disabled people. Disabled people before the pandemic with multiple chemical sensitivities/ injury, asthma, and other immunocompromised conditions have ALWAYS been masking to stay safe – from chemicals and fragrances but also viruses- and shared our already existing knowledge of different kinds of masks, where to get them, how to stop glasses from fogging and preserve lipstick. Many of us did a kind of community PSAing, talking about our histories and current day masking practices, as immunocompromised and vulnerable folks. I posted photos on Instagram of me wearing my mask, and some friends later thanked me for being an early crip proponent of masking, that me talking about why I maksed was probably why they had worn masks and were alive.
Friends who were disabled but less immune compromised than me texted saying they were going to the grocery store and did I need anything? They went through all the picked-over grocery stores and found cheese, flour and yes, toilet paper. I remember them setting the bags down on a rock twenty feet away from my front door, and us waving, with masks on, from a distance. I remember my friend making medicine and dropping off jars of tea on the doorsteps of all the Elders she knew. The DJCC was organizing drop offs of food, masks and hand sanitizer to disabled people in Oakland. Friends and I co-organized a group disabled watch party when Crip Camp went live on Netflix, the first social event any of us had had in weeks and with a truly epic 150+ text thread. My friend Lucia Leandro Gimeno turned in from the hospital, one of the first times I’d heard directly from him since a medical crisis that spring had brought him to the ICU. He texted the chat thread how much it meant to him to be in disabled space.
For most of spring and summer 2020, none of my crip friends in New York could find any N95s. And unlike me, they lived in small apartments in buildings with shared ventilation. The small dyke-owned garden and pet supply store in my neighborhood was selling KN95 masks, the only place that had any, and they only had ten or twenty on hand at any time. We were going there to get seeds, manure and cat food because they’d moved all of their operation outside, you could pay for stuff online and go pick it up from a shelving unit by the sidewalk. I would buy as many KN95s as I could afford and mail them to folks in NYC with nettles I’d picked in the park and cedar and rosemary for lung steams from my garden and the woods next to my house. Crip Fund, an ad-hoc group of disabled friends, mostly queer and mostly BIPOC, came together and raised money to give out to disabled BIPOC in dire situations, vias Venmo, no questions asked. The Crip Fund collective wrote:
They say COVID-19 doesn’t discriminate, but we know sick and disabled people are disproportionately affected by pandemics and public health crises long before and well after corona. Officials say people will die, but we say we aren’t dead yet. When anyone (and what right now can feel like everyone) says it’s only the old and unhealthy who are dying, we say stop racist-eugenics now. Much love to all life!
Some of us are losing work due to the closings and coming up short on rent, food, meds, pay for care work, etc. Some of us never had a job in the first place and live off of disability income–which always comes up short. Some of us are stuck at home well before lockdown and some are still looking for housing. We know that ableism, American individualism, and racial global capital want us dead and will try to kill every single one of us. But we also know they can’t kill us all! The time is now. It was actually weeks ago but we were in bed. Still are. What we want is free but groceries, rent, and healthcare still aren’t. Please give if you are able, or share where you can, or just vibe something good.
Somewhere in that mess of early-middle days of collective disabled terror and life struggle, I reached out to a large local mutual aid group because I wanted to know if there was anything I could do to help out–if I could be a part of this big “mutual aid” thing that I kept seeing buzz about online. They said sure, they were going and buying groceries for disabled people who were immunocompromised and couldn’t go into stores and would I like to help with that? I told them that I was one of those disabled, immunocompromised people for whom a grocery store was unsafe and asked if there were any accessible things I could do. I never got an email back.
None of the things I listed above, the disabled mutual aid we were already doing, was on their list of tasks to sign up for. They didn’t fit into their ideas of mutual aid. But every single thing listed above, and many more, are disabled mutual aid.
Disabled people don’t do mutual aid like abled people do. The ways we do it differently than them are a big reason why abled mutual aid fucks up.
In 2020, large mutual aid collectives sprang up all over North America and beyond. They were incredibly creative in seeking to address the needs of everyone facing the pandemic–everything from free fridges to food pantries, people cooking and dropping off meals and masks to emergency mutual aid funds getting money to people. Some of them, like Caremongering Toronto, a collective started by Indigenous and Sikh queer women and Two Spirit people, organized around Indigenous and Sikh principles around collective care, worked hard to connect people with what they needed and pushed back on ableist, racist ideas of charity and “prove you are worthy.”
But there were many other mutual aid groups I have heard of that seemed to not think about disabled people or ableism at all–as people who wanted to organize, as people other than faceless recipients of care–who also seemed to be ignorant of the specifically ableist and racist histories of charities and how those dynamics could easily creep into mutual aid. I wasn’t ever sure if they were talking about us and it seemed strange that disabled people were never mentioned. Not only were they not thinking about ableism, they seemed to talk about “mutual aid” without ever referencing that sick and disabled people had been practicing it for years, that there might be something (or like, a lot) to learn from us, and that a pandemic was a disabled event. Or that the term “collective care” was invented by radical disabled women and nonbinary people of color who were and art part of the disability justice movement.
The ways we, as disabled people, do mutual aid and collective care differently is something I’ve thought about a lot. Here is a list of some distinct qualities I witness showing up in crip mutual aid work:
Crip mutual aid isn’t always a big public thing. In fact, it usually isn’t, because it’s often not safe for us to be public about our needs. There’s the gawking and the gross out, the suspicion that we’re scamming or faking, the fear of losing eligibility to safety net programs like SSI and SSDI and others, the social capital we’re pretty sure we’ll lose if people know about some of our “stuff.”
There’s also the fact that some of our needs are literally illegal. We need to have control over who we allow to let try and help us because we know the likelihood of anything from getting abused to having an extremely annoying interaction is high. We need to have a little trust, or a lot, to do some of the things crip mutual aid actually involves.
Crip mutual aid is often low-key. Often small scale, offline, quiet, and invisible (to some.) It doesn’t have to be a big public deal. It doesn’t have to be huge; thousands of people in a spreadsheet. And it usually isn’t because a thousand person spreadsheet is inaccessible to our brains in the first place, because we can’t find the fucking spreadsheet. The ways our care and kindness flourish in small crip moments is a characteristic of the way we do mutual aid. Crip space is (often) small space. Smallness can be more agile and effective, and that’s great, because crip webs of trust are small. Most people don’t have a gigantic disabled community, they have maybe one friend, or two to six people they can kind of trust.
Often, the kind of stuff we do is like three people checking on each other. A couple years ago, me and some friends in South Seattle started a Signal thread called Kripsignal. We use it to check on each other during climate events like heat, smoke or snow and figure out how we can help each other get what we need. We also send bad jokes, memes, tacos and venmo. Bad jokes, memes, tacos and venmo count as mutual aid.
With disabled mutual aid, the stuff we do to help each other doesn’t look like a big deal or fall into “dramatic rescue of the cripples” tropes. They’re preventative. They’re casual and loving. They’re about disabled noticing and caring. Kripsignal is a lot of us just checking in on each other and seeing how things are going. It stops things from getting bad before they do. And it calms our “we’re going to be the crip dying alone in an overheated/ flooded apartment” terror. It comes from a place of simultaneous disabled consciously remembering each other, and our crip realities, and keeping it low key, not in that frenetic I’M HERE TO RESCUE YOU! captain save-a-crip way that is both stressful and eyeball rolling.
“Low key” is sometimes code for “low sensory overload” and so it’s accessible in a particular kind of tonal neurodivergent way. YMMV (your mileage may vary) and I’m not saying this is the One Way, but it’s a quality I keep seeing showing up in disabled spaces and relationships. When you’ve been told all your life that your bodymind is a big stressful emergency panic and then nothing helpful can actually happen to make things easier, “Hey, no big deal, but you got enough ice and a fan? Wanna watch some internet tv?” said in a chill way is a gift.
Crip mutual aid is crip creativity. Like the hangouts I had with the same friend all through the first pandemic year, where I would pull up in the disabled parking spot in front of their building and they would roll out in their chair and we would have a one to three hour long shouted conversation with masks on through my rolled-down window. We could both sit, and we could be in each other’s non virtual company. We’d pass things–apples they’d gotten from the fruit guy, weed gummies, baked goods, an extra KN95–through the window. I am not joking when I say those hangouts kept me alive. A lot of weeks, or months, they were the only in person contact with friends I had. So did the ways my crip friends agreed to hug, wearing masks and holding our breath, outside, when we hadn’t been touched for months.
Crip mutual aid is not a romanticized, sanitized version of care, it is fucking real. I’ve seen a lot of abled new converts to mutual aid sigh romantically at all the ‘community care!” memes out there. When I look at the swoony graphics and memes about the joys of care, I remember my friend, a disabled, fat, mixed race queer and trans elder, texting because their PCA had come to work sick, not wanting to put them in a bad spot, and worked without a mask on for a few hours before telling them they were ill. My friend, worried they’d been exposed to COVID, texted a bunch of people they knew and said, “Ok, we’re going to set up a system, everybody sign up on this Google doc. I need someone to text me in the morning and at night, to make sure I’m responsive. Let’s do it for the next four days, I’ll get tested too but I want you to check in on me. If you don’t hear back from me, I give you permission to call 911, let them know that I’m fat and they need to bring an accessible stretcher and this is where my apartment is.”
That’s the kind of shit I’m talking about. It’s love, and it’s the real fucking life-and-death deal. And it’s not something that my friend would’ve trusted some random abled on a mainstream mutual aid Instragram with. What they did worked because of crip on crip relationships and trust that had been building for years.
Crip mutual aid knows that caring for other crips is not always fun. It means knowing that people who have needs that need to be met are often in a bad mood and will ask you to do some shit that may sound or be untenable. (I don’t mean things like wanting a McFlurry- I mean stuff the time my friend was really stressed and also out of it and sent a text to four immune compromised people being like “UM, which one of you is going to come move these bags of medical waste????” and we were like, babe, none of us can safely do that right now, it’s the pandemic….” It means caring for people who will piss you off, irritate and trigger you. It means having to figure out what your limits are about what you have the spoons to do, and where you draw the line. It means knowing that people who have needs that need to be met are often in a bad mood and will ask you to do some ridiculous shit. It means having to figure out time and again the line between support and saving, between interdependence and codependence. I’m still figuring it out.
Related to this, crip mutual aid has a lot less of what I think of as ABLED PANIC and that’s why it works.
What do I mean by this? Well, you’ve probably seen a certain kind of Zoom thrown by abled/ hearing people who’ve never done it before, right? They are so stiff. They are terrified that SOMETHING WILL GO WRONG. When it takes the CART transcriber a minute to get assigned or if someone says hey, the ASL interpreters are cut off, they go silently into a frozen panic. They keep apologizing. They totally freak out whenever there is any kind of glitch, and when there is, they say, “We have to keep going!” Going, going, going!
In contrast, a lot of what epitomizes crip mutual aid is how matter of fact and down to earth it is. When CART stops working, we all just stop and go to the bathroom or whatever while it gets fixed. If there’s a glitch, we just stop and fix it and we don’t look surprised because we aren’t, and we don’t panic because this happens all the time. If we need to reschedule, it’s not a big deal.²
Crip mutual aid doesn’t think the pandemic is going to be a short-term thing, that the worst is over and we’re on our way back to “normal.” I’ve seen so many mainstream mutual aids scale back or close up shop because of a sense that the pandemic is over, right? I haven’t seen any of the underground or overground, informal crip networks and projects stop. We were sick and disabled before the pandemic and we know all about how things don’t go according to plan, how timelines stretch out, how people stop calling after the 2 weeks which is the longest they can conceive of a body/mind emergency happening. We know about not ever being able to go back to “normal.” We know crip needs stretch out long like horizon, like forever.
My queer disabled friend San Alland, in writing a remembrance of their friend Callie Gardner who died recently, wrote about living through the past year and months of the pandemic as multiply-marginalized trans and non-binary people and how the two of them checked in on and supported each other, “We were maybe not going to save the world, but we were going to save each other.”
That hit me in the heart. There’s been so many times in my life where my goal has been we need to save THE WORLD, anything less is nothing, inadequate.
But we, in our small crip cyphers, are the world. And the small, low-key things we do, in the crip genius ways we do them with ease without abled panic are the opposite of nothing. They are everything.
¹ San Alland, remembrance of Glasgow poet Callie Gardner, Facebook note August 18, 2021, https://www.facebook.com/sandra.alland/posts/1734987846689065,a accessed August 31, 2021
² As an important footnote to this: It’s not about having no sense of time and no one showing up for anything ever. These are the extremes abled people think of when we use those words flexibility and sustainability, as if there’s either rigid abled schedules on the one hand or a complete hippie lying in a meadow orgy on the other. But in fact, disabled spaces I have been in do care about schedules. We need shit to stop when it stops so we can pee or go home or do the next thing, we need structure and a sense of what is happening when more neurodivergent, anxious, or any number of other body/mind realities.
Leah Lakshmi Piepzna-Samarasinha is a mixed blood middle aged nonbinary femme disabled and autistic writer and disability and transformative justice cultural and movement worker of Burgher and Tamil Sri Lankan, Irish and Galician Romani ascent. A crip web weaver, couch and porch witch, they are the author and/or co-editor of nine books, including (with Ejeris Dixon) Beyond Survival, Tonguebreaker, Care Work: Dreaming Disability Justice, and Bodymap. A Lambda Award winner who has been shortlisted for the Publishing Triangle five times, they are the winner of Lambda’s 2020 Jean Cordova Award “honoring a lifetime of work documenting the complexities of queer of color/femme/disabled experience” and are a 2020 Disability Futures Fellow. Raised in rustbelt central Massachusetts and shaped by T’karonto and Oakland, they currently make home in South Seattle, Duwamish territories. Her next book, The Future is Disabled, aka (Care Work 2: The Reckoning) is out October 22 from Arsenal Pulp Press. brownstargirl.org is her infrequently updated website.
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