Lujan Agusti, a Latinx woman with differing abilities, classifies materials at a ceramics studio (Photo credit: Girlgaze Project #ShowUs/Getty Images)
All across the world we’re beginning to see the emergence of autonomous mutual-aid groups operating with a singular purpose: to provide protection for members of their local communities, including people with chronic illness or who are otherwise immunocompromised, who are more vulnerable to contracting severe cases of COVID-19. Though their methods differ, with help ranging from preparing meals to running errands to creating threads dedicated to offering humor as a form of distraction, each of these mutual-aid groups have formed in response to inaction from state and federal governments. I’ve had a complicated reaction to this call to arms.
On one hand, it has been incredible seeing local communities unite to protect people like me and those I love. I feel seen, heard, and as though the complex health needs I live with are being given deep consideration. I’ve never before had such a large group of people offering to bring me groceries or home-cooked meals. On the other hand, I am frustrated that disabled people and people with chronic illness have been forced to practice this kind of collective care work with one another for decades, with minimal help from other able-bodied people. Now that I know this scale of organizing is possible, I’m frustrated it hasn’t been extended to us before. I’m frustrated that able-bodied people couldn’t acknowledge our fears and concerns until those fears and concerns were real for them too. I’m frustrated that we’ve been left to do this alone for so long.
People living with chronic illnesses and disabilities are used to receiving inadequate care—from our immediate families, medical professionals, and the state at large. Growing up with chronic illness often involves being told that our illness is a problem. We’re told our bodies are wrong. And if our illness is a problem, we’re tasked with finding a solution. If our bodies are wrong, then we must dedicate ourselves to making them right. If we aren’t putting enough effort into health and wellness, we’re reminded how tiresome it is to care for us, as well as the amount of time and resources that are invested into keeping us alive. We’re shamed into compliance, if our illnesses are even taken into consideration to begin with. Sometimes it’s simpler for medical professionals and the state to convince themselves we aren’t sick at all. For example, dozens of women have written of their experiences with medical neglect, noting that medical professionals aren’t giving their concerns serious consideration.
As journalist Suzannah Weiss noted in a Twitter thread, it took 11 months and 17 doctors for her to be diagnosed because doctors weren’t listening to her. Though I can’t speak to the frustration of this experience, it appears our care can take two streams—having our illness acknowledged as a problem we must fix or being told we’re making it all up. So, in a world where people would rather see us die than offer us the care we need, we’ve taken to caring for one another. Care work in general can refer to paid or unpaid labor involving the care of others, such as child care or elder care. Much like care as a wider concept, this work tends to be feminized and, in turn, undervalued, underpaid and underresourced. This is also true for care work as it’s practiced amongst disabled people.
In her 2018 book, Care Work: Dreaming Disability Justice, writer, activist, and performance artist Leah Lakshmi Piepzna-Samarasinha speaks to the importance of mutual aid as an alternative to state-sanctioned care. Piepzna-Samarasinha even defines a specific form of mutual aid called “crip made access,” where disabled people, including their skills and expertise, are at the center. Piepzna-Samarasinha addresses how disabled people and people with chronic illness are “so used to disabled care being professionalized.” But we can’t afford to assume that clinicians and medical professionals are going to understand or care about our complex needs. Instead, “crip made access” acknowledges the unique wisdom of disabled people as both givers and receivers of care.
It allows us to coordinate as both the caretaker and the caretaken, directing what our care looks like, how it’s provided, and from whom. I’m proud to have experienced the radical, restorative care that sick and disabled people are all too willing to share with one another. I’ve seen mass mobilization around making sure we all have enough food and medicine, arts and crafts, and books and TV show recommendations, so we can survive the isolation that comes with being unwell. I’ve watched sick and disabled friends sacrifice their own medications or aids if someone else is thought to need them more. We organize for one another. We hustle for one another. And for the most part, we offer mutual aid without the support of larger organizations or governments.
Will we continue to support our sick and disabled friends who will remain in isolation, even after shelter in place orders have been lifted?
Because I’ve experienced this care work, it has been overwhelming to witness local communities reacting to the COVID-19 outbreak and instructions to self-isolate and practice social distancing. Mere hours after finding out the virus had hit Melbourne, Australia, I was invited to a Facebook group for the Melbourne inner Northern suburbs. This group has since amassed more than 4,000 members and there appears to be an ongoing influx of advice, resources, and offers of help for those most at risk of contracting COVID-19. A worldwide live map would suggest there are similar Facebook groups for the Eastern and Western suburbs too. Overseas, COVID-19 Mutual Aid UK is not just directing people to their local mutual aid groups but offering communities the tools and resources needed to start their own. Amidst these groups, there’s a specific focus on able-bodied people aiding more vulnerable populations.
For disabled people and people with chronic illness, self-isolation and social distancing aren’t novel concepts. We’re no strangers to sacrificing our work, studies, or social lives and prioritizing our health. Online and offline we’re all nervous-laughing about how so much of this is commonplace for us. And still, I’ve never seen such sudden, dedicated organizing around our care. It makes me wonder: Has this been possible all along? I’m torn between feeling bitter and frustrated and feeling gratitude, pride, and awe. It has been incredible to see what communities are capable of when we mobilize. I just wish it didn’t take a global pandemic for this to begin happening on a larger scale. Knowing now that this kind of mobilization is possible, I’m asking able-bodied people to reflect on what was preventing this from occurring before.
I’m asking: What do we want our communities to look like after COVID-19 has passed? Will we continue to support our sick and disabled friends who will remain in isolation, even after shelter in place orders have been lifted? How can we continue including sick and disabled people in our mobilization, given that activism tends to center around public protests in large, often inaccessible spaces? What can this time tell us about accessible and sustainable methods of communication? What can we learn from those of us who are experts in organizing from home? I’m hopeful this can be a transformative time for us all. I’m hopeful we can continue practicing the radical, anti-capitalist gesture of caring for one another while upholding the more vulnerable members of our communities. I’m hopeful we can draw from the well of knowledge that disabled people and people with chronic illness have been cultivating this whole time. I’m hopeful we can continue harnessing our collective power, mobilizing, and pulling the state to its knees at long last. I have to believe we can.
