Sixteen years ago, I caught a virus that sent my body into permanent precarity. Every choice I make is within this context, and every environment I act in: is there space for me to sit down and rest? Will this doctor believe my experiences or see the normal test results and ignore my needs? Will I be dinged in this job interview for needing to take the elevator rather than the stairs, or shunned or assumed to be drunk if I need to lie down in the middle of the dinner party?
My social existence is unsteady. My capacity for understanding and participation depends on the whims of the weather, my sleep cycle, food, medications, and more. I am fortunate to have family support and not be in danger of losing my housing or healthcare, but my disability means I am permanently dependent. My body requires breaks unpredictably; my brain is neuroatypical. I am both an extremely inefficient worker (because my productivity is not consistently within the same hours with precisely timed breaks), and an efficient one (because I’ve learned to make up the difference).
The concept of disability, in its current form, was birthed by the industrial revolution and its descendants. Mindsets and policies focused on workplace efficiency harm workers who do not fit the mold, disabled workers included. This is as true in factories like those that led to the mindset but also for those of us whose workplaces come with adjustable office chairs, ergonomic keyboards, sound-blocking cubicles. We are not as economically productive, particularly in a system that is not built for us, and thus we are less valuable, and thus the system is even less likely to accommodate us, even when legally required—and the legal requirements have holes you could drive a truck through.
In Neoliberalism and Embodied Precarity: Some Crip Responses, Margit Shildrick muses on debility, disability, and precarity. In her view, debility is the embodied where precarity is the social, but debility (in my view) leaves room for a steadiness in the condition in question, whereas precarity implies, well, precariousness. A chance of an unpredictable change, a big loss or potential loss of capacity, at any moment, and that maps onto my chronically ill body experiences much more precisely. Bioprecarious people, like me, are permanently liminal. We are seen as partial people by workplaces, friends, volunteer organizations—perhaps we benefit from their charity, but are too unpredictable to be worth hiring on.
Unlike sickly daughters in old novels and other fictional examples, my bioprecarity is not theoretical; it is not a stand-in for moral frailty or female fragility (I am not a woman, though I am frequently perceived as such). My bioprecarity does not turn off when I need it to, or when I find love or fulfillment, or when it stops serving the plot. I am stuck like this. If capitalism were abolished, if we mysteriously and magically came to an all-minimum-needs-met basis for survival, I and people like me would still be living an uneven, unpredictable life.
Since I first got sick, I have blamed myself for my situation. For my inability to get through all four years of undergraduate studies in a row. For my inability to work alongside taking classes, or to work full time, or sometimes to work at all. For how I do not consistently have full medical care that I need. It’s embarrassing to be precarious! I apologize a lot, and try to be aware that I’m in both a more and less fortunate place than many other people.
Even in disability spaces, there can be an uncomfortable split between those with variable disability and those whose experiences are predictable. But I’ve searched for, and found, community among other precarious people. Chronically ill people help each other, when we can, from our underemployed or unemployed situations. We edit each others’ SSI applications and provide emotional support before, during, after doctors’ appointments, texting frantically waiting in a sterile room for the doctor to return, trying to decide how to push back on a diagnosis or ask for that one extra piece of advice.
And as the world descended into pandemic-fueled chaos and widespread unemployment in early 2020, precarity growing in concert with widening economic inequalities, I was in the bizarre position of having a more stable work situation than I’ve had in years. After graduating with a Masters degree in public health a couple years back, I worked (when able, and when work was available) as a temporary office worker; my most recent temporary position was extended and then changed to a permanent role at 20 hours a week with flexible hours that allows for work-from-home during the entire pandemic, an accommodation that should be bare minimum but instead is above and beyond what many employers offer.
This was going to be a different essay before the COVID pandemic. Before yet another “natural” disaster exposed the inadequacy of our social safety net, leading millions of people deeper into precarity and leaving so many with new acute and chronic illnesses. Before people began experiencing “long COVID”, a syndrome bearing striking similarities to ME/CFS, POTS, and other post-viral syndromes like the one I live with. And this new cohort of chronically ill people are organizing. They are supporting each other. They are facing precarity bluntly and together, building support systems and finding helpful doctors, participating in research as patient-led groups, not funded by pharmaceutical companies. Bioprecarity, for so many of us, is a permanent literal state of existence.
As many people have pointed out before me, society needs to change. I do not think we owe society predictability and health; we are human, existing in fragile bodies. Instead, what if we move towards expecting bioprecarity rather than using dependence as a basis for shame. What if illness did not mean a temporary misstep we’ll “make up for” later. We could instead plan for variation and destigmatize help. And nobody needs and understands this more than the permanently precarious, the chronically ill. The giving part of mutual aid is beautiful community support, but it can only happen effectively if people know, admit, and communicate their needs, and if society allows us to shape it towards our collective needs, not just the most efficient and able.