I Am Unsafe Because of My University’s “Safety” Practices: On Periodic Paralysis and Neoliberal Surveillance
- disabledacademicco
- 2 days ago
- 8 min read
By Court(ney) Felle (they/them), Ohio State University
As my body starts to shut down, I peer frantically into each classroom that I walk past, hoping for some safe and private space where I can wait for the flare to pass. I know the rhythms of my hypokalemic periodic paralysis by now: Mere minutes after my lower limbs begin to buzz, I will get foggy and delirious, and soon, I will be completely unable to move.
Typically, when I am not having a flare, it is automatic to lift my finger half an inch; the translation between desire for movement and actual movement happens near-instantaneously. Now, it’s like my brain and body use entirely different alphabets, with no exchange possible. Either I reach somewhere comfortable, or I don’t. One way or another, I will be horizontal on the linoleum, totally paralyzed, for however long it takes for my potassium levels to reset.
My anxious question: Will someone call 911 on me? If they find me unmoving, unable to blink or respond, seemingly unconscious despite full internal clarity, I have to assume that they will. It almost happened before. I’ve only narrowly avoided it by having a person with me, someone who was fully verbal and educated on my flares, and even then they barely convinced the would-be caller to leave me be. Calling 911 is what we have all been conditioned to do, both in mandatory training videos and as people inundated by societal messaging that speaks of risk and intervention, rather than nuance and sustained care.
While at times I may be tempted to seek an easy scapegoat, I can’t blame anyone for calling. The institution quickly and gladly transfer legal liability to anyone who ‘ignores protocol.’ Never mind that disabled individuals know the medical-industrial complex often cannot help, and indeed might cause more harm. When I last had a flare severe enough for an ER visit, an EMT confused hypokalemia and hyperkalemia (a potentially deadly error), a triage nurse assumed a young femme must be ‘merely’ having a panic attack, and no one ever gave me anything beyond a basic IV until the episode passed on its own. I still managed to get stuck with a multi-hundred dollar bill, a substantial amount to someone on a PhD stipend. My chances of survival are better on my own than in the medical-industrial complex, and that’s an indictment, not a reclamation. So why do I still feel the need to justify why I don’t trust 911, as if that distrust is fringe to our medical system, not a fundamental part of it?
There are more sinister reasons that someone might call 911. I appear confused, disoriented to space and time, walking with my feet turned inward, stumbling, slurring words because my fine muscle movement is fading. I’m unsightly. I’m loitering. That is to say, to most passersby, I look drunk or high. There’s nowhere to sit and avoid scrutiny. All the benches have bars in the middle to prevent unhoused people from lying down. Even if no one is around, I’m sure there’s a surveillance camera somewhere, recording how non-normative I’m acting.
If or when someone does call 911, I will likely not be verbal. The situation could easily escalate beyond my control—the job of “emergency responders” is to define what an emergency is and to escalate whenever and however they choose—which is, of course, immensely distressing. Ironically, my greatest trigger for a periodic paralysis episode is a sudden cortisol spike, which is to say, biochemically, stress. It is stressful to have a stress-induced condition that could onset anywhere, anytime, with life-or-death consequences, not only biologically but institutionally. When I am sitting in a busy lecture hall and my mind begins to wander, I cannot help but wonder, “What would happen if I had a periodic paralysis flare right now,” and my ankles wobble and buzz, threatening an answer.
All of the doors to private classrooms and offices where I could potentially wait out a flare are locked, a result of the university's cowardly attempt to deter antizionist student protestors last spring. Administrators walked from classroom to classroom manually disabling all the keypads, an intentional and insidious decision to prevent students from the nearby encampment from using the building’s bathrooms or fleeing local police violence (including tear gas, snipers posted on the student union building, and two school buses crammed full of arrested students). Almost a year later, administrators have yet to come by and restore the rooms, if they ever even will. I am stuck in the cold, rubbery hallway, where anyone might walk by. I am resigned and quiet as the flare takes over.
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When I try to explain my flares to other students or professors, I feel hyperbolic describing all of the micro- and macro-level thoughts flashing through my mind in the few minutes before I am paralyzed. It is also true that all of these thoughts do flash in real time. I am used to my periodic paralysis and the complex web of anxieties that are a regular part of life for me. (At times, thinking about all this is literally easier than breathing.) It is other people who are not used to my periodic paralysis and the embodied weight it gives to all these interconnections, or what to do when such a flare might occur in an institutional setting.
When I have a flare at home with my girlfriend, they will force my jaw open, crack a pill of potassium chloride into my mouth, and hold a cup of water with a straw there until I manage to drink just enough water for the medication to hit. The longer a flare lasts without intervention, the more muscle damage accumulates, leading to irreversible, lifelong weakness. In my first semester of graduate school, I asked professors to remove my bottle of potassium chloride from my backpack—not to administer it, but to simply put it on a nearby surface for easier access—and they unanimously expressed hesitation. Will the university deem them legally and financially if something goes awry? Did the office of disability services sanction this?
Now, I phrase the email that I send to professors at the start of each semester: I would rather give you tools that you never need to use than have a flare that catches you unaware. Please do not touch me. Please do not freak out. Keep teaching. Sit with me after class if needed. I will eventually get up, take my own medication, and act normally again, if all you do is observe from a distance. This is partially true. It is also already a significant compromise to institutional processes, whittling away what I might genuinely need for both short- and long-term health in a more ideal world. It is ‘safer’ to default to individuation and property. Please don’t touch me rather than yes, actually, please touch me, even and especially when I cannot say yes.
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Put more clearly, my point is: The loss of private spaces on campuses, as part of a broader adoption of universities’ extreme neoliberalization and techno-surveillance practices against students and faculty, is especially dangerous for disabled students. It likely was not designed with disabled students explicitly in mind, especially not the type of disabled student that university administrators tend to conceptualize and regulate. It was instead designed to further marginalize local unhoused folks and potentially radical student protestors, which is crucial to name. That is how this world came to be, not as an accident or byproduct, certainly not as an inevitability, but as a particular, intentional cushioning against the administrative class’s own violences. And yet it also came to be through a rejection of looking too closely at, or caring about, what disabled lives are really like.
This process, by which we lost our third spaces, by which we lost safety in the name of ‘safety,’ has two main flaws regarding disabled students. Administrators assume that the default student is nondisabled. Disabled students must then navigate a university that is only at best retrofitted for them, required to ‘prove’ that they’re a good neoliberal subject by successfully and independently navigating the university amidst these barriers. Whatever technical accommodations the university offers, disabled students must provide significantly more “reverse accommodations” back, dealing with the added time and effort necessary to accommodate the university’s inaccessibility. (This term is from Lauren Obermark’s “Making Space for the Misfit: Disability and Access in Graduate Education in English.”)
For disabled students who cannot be rehabilitated (or, if I am being even less generous, declawed) into a neoliberal subject, this process allows for heightened violence against radical, disabled students. Recall again the disabled antizionist protestors from the Spring 2024 encampments. After calls from George Washington University administrators, the Metropolitan Police Department in the District of Columbia destroyed and refused to replace a Georgetown student’s wheelchair following the DMV student encampment raid. University of California Santa Cruz worked with local police to threaten, attack, and permanently disable student and faculty protestors. When the University of North Carolina at Chapel Hill sicced police on their campus’s Triangle Gaza Solidarity Encampment, police seized one disabled Duke professor’s mobility aid and partially dislocated her shoulder, further disabling her. These are only some of the stories that have been reported. We hear of similar stories in our own communities which will not or cannot receive national coverage. Universities do not actually care about disabled students’ needs, but rather the minimal legal compliance necessary to continue accumulating and wielding power within a carceral system, even and sometimes especially when in contrast with disabled students’ needs.
I want to suggest that a better model would prioritize community care over legal liability. I want those who come into contact with me while I’m having a flare to first consider me as a fellow vulnerable person to/for whom they are responsible, as much as I am also responsible to/for them. But this feels like too obvious and easy a conclusion, especially for those already engaged in political organizing amongst disabled students and faculty. We’re trying to do that. Often, we are doing that. It’s not enough.
The tension, perhaps, is how one might “standardize” a model of community care at an institutional level, let alone a systemic multi-institutional level. Working across institutions fundamentally requires abstraction, which gets us further from the people, situations, and nuances we actually experience on the ground. We need to work bottom-up, not top-down, and resist the urge to implement even bottom-up wisdom in a top-down manner. I don’t want to replace totalizing technocratic policies with well-intentioned policies that then get co-opted into being totalizing again.
The question is: How can we create meaningful flexibility in administrative policies that allow us to subvert their totalizing aims, but also prevent the kind of flexibility that would allow for, say, police discretion and abuses of power by those in control? How do we build a world in which we do not call the cops on each other, in which we do not have to worry that someone might call the cops on us, that does not replicate a cop-like logic in the end? How do we build a world in which people can look and act, for lack of better words, weird on our campuses, and we protect and support them in doing so? Necessarily unfulfilling within this violent, ableist maze, this strikes me as a major question for disabled organizers within academia to address as surveillance encroaches more and more deeply into our lives and the institutions that structure them.
Court(ney) Felle (they/them) is an MA/PhD student at the Ohio State University, housed between Writing, Rhetoric, and Literacy and interdisciplinary Disability Studies. Courtney is interested in “diagnosis” as a social construction and narrative tool, especially where it overlaps with concepts of crip time, trauma studies, and wider forms of oppression and catastrophe. Before starting at Ohio State, Courtney led a nonprofit program for young adults with rare disabilities to find policy, advocacy, and public speaking opportunities. Their previous writing on disability can be found in SICK Magazine, Monstering Magazine, interACT: Advocates for Intersex Youth, Teen Vogue, and other publications.
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