The Pain Cluster
It was midnight on Halloween. The muffled chants of frat boys clued me in to the scene outside. I shut my computer, my second big round of job market deadlines now behind me. Since that morning I'd been reading, revising, re-reading, re-revising, and re-re-reading my applications for the half-dozen postdoc and assistant professor applications due by 11:59 p.m. I needed a drink, frat boys be damned.
But when I stood up, I realized something was wrong. My head was throbbing. I got so nauseated I lost my vision. It occurred to me that, in those last frenzied hours of writing, my insulin pump had been making alarm sounds. I'd silenced them every time, unable to pull myself away from whatever idiosyncratic and time-consuming application portal I'd been enmeshed in. When I checked the device, my bodily revolt made sense. My blood sugar was literally off the chart, higher than the pump's measurable limit of 400 mg/dL (about four times the healthy range). It had been that high for several hours, putting me at a severe risk of ketoacidosis — the condition that causes diabetic comas.
I didn't understand how this had happened, given how stable my blood sugars had been recently. I must be leaking, I thought. I pulled down my pants to check the port on my leg where insulin enters my skin, and sure enough, the tubing had completely dislodged from my body. My pant leg, rather than my epidermis, had been the recipient of my meticulously scheduled doses.
I lay down, quietly raging that after working several fifteen-hour days in a row, I might have to go to the ER. I would, at the very least, have to stay up into the early morning hours to ensure I didn't slip into a coma. All I wanted was to rest, and I couldn't. But the rage went deeper than that: I had been in an emergency state for hours, and had only noticed it when I'd stopped working. Academic gallows humor aside, the job market had nearly killed me.
***
When women write about being failed academics, it's rarely a matter of the work itself. It's the rampant misogyny and harassment, and/or the more-successful male partner, and/or the unwillingness to rein in the kinds of feminized excesses that embarrass the institution. Increasingly — in regular conversation if not yet in belles lettres — adjunctification and austerity compound these problems. In any case, the obstacles to success are always figured as the things that impede the work we really want to do, are capable of doing, would be doing all the time if we could just get the respect we deserve.
These grievances rule my own mental life, to be sure. But I also wonder if the real wound runs deeper. Maybe the work itself is the problem for many of our bodies; maybe the work we're good at, good enough to do, isn't work we are capable of doing at the pace and volume currently demanded of those who do it. Maybe that's still too terrifying a prospect for many of us to admit.
I recently re-read Chris Kraus' I Love Dick for the first time in nearly a decade. Though I had retained a sense of its academic frustration and institutional rage over the years, I was surprised to find that I had forgotten it was a book about a sick woman. It's not hard to see why; when its autobiographical protagonist (also named Chris) complains that she is "too old to be an academic groupie," she is primarily complaining about the way she has been relegated to the status of "Sylvère Lotringer's plus-one" for more than a decade despite her own prolific art practice and theoretical chops. But she is also complaining, I am certain, about what it means to be ill. The novel returns repeatedly to the fact that Chris has Crohn's disease, and that her flare-ups are triggered not by the clinical commonplaces of "stress" or "depression," but by what she calls despair:
Despair began with a contracting, a swelling of the small intestine which in turn created an obstruction which in turn caused vomiting beyond bile. This obstruction was accompanied by abdominal pain so overwhelming she could only lie beneath it, waiting for the onset of high fevers, dehydration. The pain was like a rollercoaster: once it reached a certain point she was strapped in for a ride which inevitably took her to the hospital for sedation, intravenous drugs and fluids.
Despair, for Chris, is typically a work-related and gendered malaise. Tellingly, the trigger for this particular moment of despair is when she learns that Dick, the subject of her life's most impassioned emotional and intellectual project, has reduced that work to the descriptor "some strange scene." That is, when her work is devalued, Chris becomes too sick to work at all.
The novel does not explicitly trace connections between Chris's chronic illness and her outsider status relative to the academy. But as a lifelong weatherer of autoimmune disease, I see it everywhere. When a friend advises Chris to marry a rich man or an academic, I hear a need for protection not just for the Unmarketable Feminine that defines Chris's work, but also for the expenses and work disruptions of life-threatening flare-ups. When Chris bemoans the anxiety and banality of a life spent managing her husband's real estate holdings, I see a woman putting up with work she resents because it's work she can do without running out of sick days. (In academia, where we don't actually have sick days, work is only as "flexible" as the number of classes you can cancel without getting disciplined. For some of us, that's actually zero.)
As Johanna Hedva's Sick Woman Theory has taught us, there is no disentangling sickness from womanhood, where woman "still represents the un-cared for, the secondary, the oppressed, the non-, the un-, the less-than." To be too sick to keep up with the work is to be a woman, is to be less-than in the eyes of the institution. The choice we're given when we're ill is essentially to "man up" or find another career.
***
Every job application includes the following disclaimer:
Federal law requires employers to provide reasonable accommodation to qualified individuals with disabilities. Please tell us if you require reasonable accommodation to apply for a job or to perform your job. Examples of reasonable accommodation include making a change to the application process or work procedures, providing documents in alternate format, using a sign language interpreter, or using specialized equipment.
I think about what it would look like to claim an accommodation for what happened to me on Halloween. Had I noticed, at 9 or 10 p.m. on the night the application was due, that I was in the middle of a medical crisis, what options would have been available to me? I could risk asking for more time, a request that could very well be denied whenever the relevant bureaucrat got around to it, at which point it would be too late to apply at all. Likely such an appeal would require medical documentation, meaning I would have had to go to the ER and pay a $150 copay to even make a case for my medical need.
Or: I could push through the alarm bells, get the thing in by the deadline, avoid dredging up a lifetime's worth of medical trauma in the ER, and save the equivalent of a day's worth of freelance wages. It's no wonder my body hides its emergencies from me. And I'm a white woman with Type 1 diabetes; for people of color and those with more stigmatized conditions, the work of securing accommodations can be even more dangerous and retraumatizing.
The truth is, there is no accommodation that would make this process accessible for me. There is no thing that chronically ill people can request to make the academic job market anything other than a massive health liability — unless that thing is universal health care, the end of adjunct labor, and a common app for teaching jobs in higher education. No matter how much well-meaning mentors might tell us to prioritize self-care, advocating and caring for ourselves just won't cut it, which is why disability scholars have long prioritized structural access measures over the ADA model of individual accommodation. And as it stands, the structure of the academic labor market is inherently exclusionary toward sick and disabled workers.
Today's conventional wisdom, for instance, is that it takes at least three to five years on the market before most newly graduated PhDs can hope to land something stable. Almost everyone is looking at half a decade or more of teaching too many classes, applying for too many dead-end jobs, likely subsisting on poverty wages, and probably moving to a new city every year or two — meaning finding new doctors and negotiating newly inscrutable health care systems every time. To put it simply: there is no accommodation for the physical toll of running yourself into the ground for years on end just to get a job in the first place.
***
If a body falls out of the job market and no one hears it, does it make a sound? I consider what it would mean to keep the bodily elements of my professional experience private, as any reasonable job market advisor would recommend. But ill-advised or not, I feel compelled to be a sick person in public, because left to its own devices my mind is prone to revisionism. Like the way some women's memory diminishes the pain of childbirth, I look back at the health crises of this past fall — Halloween was just one of multiple — and begin to think none of it was anything I couldn't endure again for the sake of a dream job. I also look around at my nondisabled colleagues, who have had their own share of harrowing job market experiences, but are still enduring, year after year. Is it really so impossible for me, the supercrip on my shoulder implores, or am I just underestimating myself?
There are reasons, of course, that sick people have trouble with our own realities. In her book-length essay Socialist Realism, Trisha Low recounts the memory of a nosebleed she once had as a "defective and sickly child." It's a gruesome scene: a child screaming and spurting bodily fluids, a grandmother flailing to calm her down, and streams of blood-red projectile vomit. But when she wakes up after passing out in a panic, the only evidence of the ordeal is a small, dried-out blood clot at the bottom of a plastic bucket. "I can hardly believe I'm alive, or how wrong my own experience can be," Low writes. "I can barely believe the lesson I've just learned — that what I'm certain I know will rarely be perceived by others as real." It's a salient parable for the experience of illness: once a crisis has passed, it can be difficult to believe one's own recollections of pain, let alone to convince others of it.
Every disabled academic I know has a story about a colleague or supervisor causing them to question their own bodily experience. Often, this comes from the people we most value, respect, even love: the peer who's always down to commiserate, the mentor who really believes in us, or the friend who always has our back. There is a prevailing misconception, if a well-meaning one, that what the precarious among us need most is encouragement. When we say, "This lifestyle is unsustainable for me," others say, "You can't give up yet! Your work is so important." When we say, "I'm thinking about stepping away from the job market," they say, "Don't sell yourself short — it's hard for everyone." When we say, "But it's harder for me," they say, "But you're so special and good!"
I'll be the first to admit these things can be nice to hear. But as the disabled person in this interaction, you are left with a difficult set of choices: 1) disappoint the people who believe in you; 2) try to persuade them by disclosing more health information than you intended / feel comfortable with; or 3) take their advice and continue putting your body at risk. For the many of us still undoing years of conditioning that taught us to make our bodies as small and invisible as possible, the last choice is the easiest — the most real possibility.
After all, in the great books and movies, realism means you either overcome your disability or die. When we refuse those options, the humanities still can't help but shudder.
***
And then, of course, there are the not-so-well-intentioned moments of "professionalizing." Illness and disability, it turns out, are quite good at unearthing those subterranean dynamics that make academic sociality hostile to anyone who doesn't appeal to the desires of tenured white men. I Love Dick gets at this as well, I think, when Chris recalls an old mentor who ostracized her for being a "Serious Young Woman" — "an innocent, a de-gendered freak" who "hadn't learned the trick of throwing sex into the mix." I recognize this persona with a wince. Illness is not just perceived, but also often internalized, as a desexualizing force, which can be a liability in academia's notoriously eroticized power dynamics.
I remember, in particular, a faculty member who used to hang around the grad student bar near Columbia. While he palled around with the men in my program and flirted with some of the women, it was clear he found me totally unremarkable. He was visibly put off by the "seriousness" of my interactions with him, yes, but also by the supposed unsexiness of disability, a marker I openly claimed and studied. (When he asked what my recent poetry collection was about, and I replied, "sex and illness," he scrunched up his face and told me he didn't need to know.) While I counted my blessings that he didn't prey on me the way he did some others, I still came away from most of our interactions feeling belittled and out of place, like a killjoy who hadn't found Sara Ahmed yet. Eventually I started avoiding his apartment parties and the bar nearby, where faculty and grad students in my field often congregated.
The Serious Young Woman, I learned, can be the Sick Woman's scholarly alias. She and her work both fail at the work of being palatable.
Now that I'm in a position to visit new institutions, I regularly think about the time this man preyed on an undergrad in front of a group of visiting accepted grad students. I think about the racist and ableist comments he spewed while drunk among his colleagues. I wonder what he must have said and done when women—sick women, women of color, queer women—came for job talks. I imagine how I might have tried, and failed, to smile and nod through that already physically demanding and inaccessible 48-hour interview.
(You might notice that I use the past tense. Since that professor was found responsible for multiple Title IX violations, including sexual assault, he has been on an indefinite leave of absence, during which he continues to receive his salary. This precludes the department from reopening his tenure line to any new hires.)
***
I want to write "I've begun to feel sick while writing this," but I hate myself for it. Corny as hell. My stomach lurches.
I dwell on institutionally backed abuse and neglect and I want to puke, obviously. But more than that, the ableist brain food I have digested over the course of a life reveals itself to be an ongoing retching. Why, I ask myself, would I reveal these personal weaknesses to a public? Why would I hold up my broken body for any old hiring committee to see? Why would I say out loud that I can't keep up — and then, if I can't, why do I keep trying? Why can't I just swallow my bile and move on?
Mercifully, working in disability studies has taught me how to break down the internalized shame that produces that ugly onslaught of questions. In their stead, I choose to follow a number of disabled artists and thinkers who view their experience as a canary in a coalmine. Sick and disabled people are among the first casualties of the insidious mind-over-matter work ethic that obscures and rationalizes academia's austerity crisis — but we all know that that ethos is inhumane for everyone it ensnares. Trying to produce scholarship while teaching a 5/5 and applying frantically for your next temporary contract will hurt your body, no matter what kind of body you have. Moving far away from all your care networks will hurt your body. Sacrificing social life and sleep will hurt your body. If you think it hasn't or won't, give it a few years.
But even if labor exploitation is disabling to everyone, it is not uniformly so. Where some able-bodied workers can accept conditions that push their physical and emotional limits to extremes, people who start from a baseline of pain and exhaustion are forced into life-threatening decision-making scenarios. For some people, pulling an all-nighter to meet a deadline is a psychiatric emergency in the making. For some, the meals you're supposed to talk through instead of eat during job talks correlate to lowered cognitive function and hours or days of recovery time. Who is more likely to make it through the ringer of early-career stress and precarity? Who gets pushed out when people are expected to pick up and move every year? What are our students losing when hiring is stacked against teachers who know firsthand the value of care, interdependence, vulnerability, and access?
I am angry, yes, but I'm also an optimist. And if disability studies has taught me anything, it's that nihilism and resignation are not options. Material conditions can be changed, through a dogged combination of resistance and refusal. It's no more impossible to unsettle expectations of constant productivity in academia than it was to alter entire cities' sidewalk systems or to implement captioning across every television network. When an environment is incompatible with bodily access and safety, you fight like hell to change it, despite the many powerful interests invested in its staying the same.
But these lessons have not yet filtered into the able-bodied academic world at large. So many of my able-bodied colleagues have told me of health issues that coincided with the job market, then dismissed them as "just stress" — an individual weakness to be cured or pushed through. Only when nondisabled academics can begin to recognize that their psychic and physical pain is structural, as disability activists and scholars have been arguing for decades, can we begin the real work of alleviating it. We can theorize all we want about the breakdown of the mind-body divide, but if our labor practices don't allow for rest and healing, the critical thinking we are tasked with teaching others is a corrupt and empty enterprise.
Of course, the structural problem is broader than academia, and shifting the idiosyncratic work expectations of a particular profession will not alone resolve the precarity in which disabled academics live and work. Without Medicare for all and strong labor unions, academia will continue to look like a horde of subway rats clamoring for a single slice of pizza. But I want to believe it could look different, that it still might — and it is a deep grief to think I may soon have to give up the rare and life-giving places where it already does. My colleagues in disability studies, for instance, are devoted to creating accessible spaces for intellectual exchange. My grad student and adjunct friends collaborate to undermine the ableist gatekeeping of the intro courses we teach. My comrades in other programs are occupying campus property rather than giving in to draconian pay structures that cause them health complications.
I want to keep being here in these worlds. I want sick people in classrooms, as both teachers and students. I want disabled people writing, researching, and creating new ways of doing scholarship. But I also want us to stop giving in to academia's demand that we trade in our current health for some flimsy promise of future health and stability. I want us to be able to refuse these things without disappearing from higher education. We can only do this with the support and solidarity of our able-bodied colleagues, those who traditionally have hung on to the profession while others have dropped off, unremarked upon. If we are to achieve any state of affairs other than the ability-segregated one we're in — in which 4% of faculty are disabled, compared to 22% of the population — it can't just be disabled people refusing expectations of infinite productivity and limitless availability. That is, it can't just be those of us who don't have a choice, and it certainly can't just be people in contingent positions. Nondisabled people who have salaries, research budgets, and sabbaticals need to model that refusal, and mobilize to ensure their more precarious colleagues can do the same.
Disabled people are sick of hurting ourselves in order to survive. It's time the rest of the world gets sick with us.
Liz Bowen is a poet, critic, and disability studies scholar living in New York. She is the author of the poetry collections Sugarblood (Metatron Press, 2017) and Compassion Fountain (Trembling Pillow Press, 2020).
