An anecdote Leah Lakshmi Piepzna-Samarasinha references a couple different times in Care Work is about her disabled, wheelchair-using friend who, when interrogating the potential flaws of a care network, says “I don’t ever want to depend on being liked or loved by the community for the right to shit in my toilet when I want to”. I haven’t stopped thinking about it since. Of course! No one should be left without the care they need because they’re not particularly pleasant or charming company. As Leah says later, “access to many kinds of care—from friends and internet strangers, from disabled community centers, and from some kind of non-fucked-up non-state state that would pay caregivers well and give them health benefits and time off and enshrine sick and disabled autonomy and choice” is what EVERYONE deserves regardless of their personality features or inability to perform niceties when they are also in pain, exhaustion, or hardship.
These thoughts in Care Work link directly to something I mused about on Twitter a few months ago after a piece I wrote about Long Covid and mutual aid was published over at Autostraddle. My piece revolved a lot around my own unplanned need to tap into the mutual aid barnraising network I talked about over in this post because I was on a medical leave with Long Covid. Mutual aid and this network of comrades brought me money and meals and Gatorade when I needed it. A commenter noted that while they were happy that I had been able to tap into a mutual aid network, their experience was actually that many of their friends and supports had shrank away from them as their Long Covid experience endured. Which is why I want to re-introduce the comrade relationship framed through this disability lens.
Disabled people, especially in a context of millions of newly disabled people, need and deserve access to more care than any one friendship could offer them and that care shouldn’t be based on someone’s likability. Disabled people also shouldn’t have to share all the intimacies of their lives or disabilities to get the care they need. Disability is often profoundly isolating; a homebound person might not have many or any friends. Do they not still deserve care?
Disabled people DO need comrades, though. We need people who agree to be comrades to each other regardless of how much we know about each other because we all agree that our liberation is bound together and our communities are stronger when care is provided in the collective. Here’s a small example: this summer, during a bout of severe diarrhea that had lasted days already, I put out a tweet asking for someone to deliver me Gatorade so I could avoid dehydration and an ER trip. The person who brought the Gatorade to my door had never met me but happened to live a few minutes away, had access to a car, and had the time and money to buy me $12 of Gatorade. The care I received, then, had very little to do with the intimacy and closeness of my relationships to people (which are very very hard to sustain with Long Covid- a post for another time) but had much more to do with the mutual aid network that we both participate in and the shared agreement that we all will provide care when and how we can.
And honestly? Disabled people, though often perceived as people who need more than they can offer, are so often the fulcrums of mutual aid work. They often are the people coordinating rides, meals, and connecting money to people who need it and they’re doing it, as I mentioned here, because they were forced out of the conventional workforce and can do it from the couch or bed while abled people are at their jobs.
So much of what we try to shoehorn into family or friendship relationships is actually better served by the idea of camaraderie. My chronic health conditions can make it very hard to be supportive in friendships but understanding my role as a comrade to my comrades allows me to offer care from within my capacity. Maybe I can’t leave the house to attend your birthday party, but I can definitely boost your need for money when a crisis arises. And maybe I can’t come over to sit with you through your break-up with your partner, and maybe we don’t even know each other for real, but I can send you delivery ice cream.
This recent systematic review of 57 studies about acute and post-COVID sequelae in 250,000+ patients demonstrated that at least 50% of patients had post-covid symptoms 6 months after acute infection. Extrapolating from that, we should be expecting millions more disabled people. Millions more people that will need care whether or not they’re a likable person with lots of friends. We’re gonna need comrades and we’re gonna need a lot of them.