On an unsurprisingly hot day in the near middle of summer, I called my friend.
I have another disappointment to share.
This time, I let her know I could not keep our dinner date.
It was, as I remember it now, a day not unlike those that preceded it. Whether it was a Thursday afternoon in the middle of June or late morning in July—I can’t exactly remember. But what I do remember is this: that it was more of the same. She answered, as I had expected, on the first ring. She sounded, as I had figured, less than surprised.
“Oh, no. We would have loved to have you over.”
“I would’ve loved to come, but I’m just not feeling up to it again. I’m sorry. I don’t mean to ruin your plans.”
A pause, and then—
A familiar, silent tension hugged the room, like a smooth, satin bow atop a box of sundries.
I almost did not notice it.
I was too busy waiting—with one hand gripping my phone and the other shooing away the man dancing on the roof. I decided to start counting the grooves in the table. I wondered how many others sat where I did, and, as I felt the room sigh, I wondered whether any of them wondered the way I did, too.
I was renting a room in one of the larger, quieter, fraternity houses on-campus. The cheapest room I found was haphazardly tucked behind a fourth-floor corridor with loud floorboards, a stubborn trail of dust, and a finicky hallway light that defied repair.
It was just as well.
I was busy.
I was working—I mean, I had a job (!)… one that I had not showed up for in two days. I was a research assistant. Precariously piled atop of the second mattress floor were stacks of transcripts I was meant to be coding, analyzing, surmising about one way or another. I was a real-life, work-study college student, drowning in incompletes; a resume-worthy research assistant, who, “with promises of intellectual curiosity”, was prone to a “malingering” apathy.
“You are a worrying thing,” a therapist once proclaimed. Her eyes lit up as mine bulged. “That’s all. The good news is that it’s all right here—just in your head.”
I can’t exactly remember if I nodded in confusion or stayed still. I may have been too focused on extinguishing more smoldering fires—like the gnawing sense of dread that threatened to swallow me whole, or the flicks of blood red that danced about the office walls, a dance I am sure only I was privy to.
I have been pretty busy.
“Are you sure I can’t change your mind?”
Go! Eat! Be merry!
“Maybe some other time.” I frowned as the roof dancer waved me over.
It is not that I am rude or unfriendly, but I was on the phone.
I am having a real-life conversation with a real person. Now is not the time to go jumping into clouds.
“Oh, but we’d love to see you. And we’re having Harry’s famous diri ak* —”
* Diri ak is Haitian Creole for “rice and.”
Leave your room for an evening, Gerpha—for once in a week. Or stay here! and join him. See what’s happening over on his side of things.
“I’m no good as it is now; I don’t want to be bad company.” He winked at me, turned his back, and started tip-toeing against a sloping ridge. I could feel him smiling, basking in the hot sun rays just as easily as I could feel her smiling, oblivious to it all, on the other line.
And all I could muster was a lousy grimace.
My shoulders jerked with every step he took.
He loved coming around.
“Oh, stop it! We love having you around.”
Frustrated, he tapped his foot twice before shrugging, waving, and lifting one bare foot off the beam.
“That’s really nice of you to say,” I admitted.
The tension is louder than bombs.
I doubt she caught the hint in my voice. With my free hand, I yanked the window blinds down.
“We mean it, sweetie.”
“I know you do. And I appreciate your always keeping me in mind.”
“Of course, sweetie.”
A quiet noise wedged itself between us. It lasted long enough for my restless hand to trouble a nick on the right drawer. Curious, compelled, whichever—I started picking at the hole with my index fingernail.
I wonder if he’s all right.
I wonder if I will get a splinter, if I remember what a splinter looks or feels like, if I would even recognize one. Has anyone ever died of splinter-related injuries? Suicide by splinter? My task becomes more grueling. I grimace, though this time in determination. The tip of my finger reddens in opposition of suddenly morphing into a chisel. I wonder how much force I should apply before the damage becomes anything worth looking at. I wonder how long it will take before my nail breaks. I suddenly wish I had a clock but then remember I might not trust another timekeeper.
How many real causes of death have been manipulated for a more serious-sounding ruling? My nail starts to crack. I worry that when my body is found, lifeless and finally still, that no one will take the time to give me a good once or twice-over. They’ll just lug me out and chalk it up to something more textbook. Dehydration, maybe? Slip and fatal fall? Some kind of phantom arrhythmia, a hijacking of the heart?
The bend in my nail widens but hangs on. How am I not bleeding?
I didn’t realize any part of me could be so strong.
Cancelled dinner plans suddenly turned inside out.
“Well, just know that we are here for you.”
I was being offered condolences.
“Thank you.” It felt like the right thing to say.
We hung up after a series of forlorn we’ll stay in touch-es. I paced the length of my unmade twin-sized bed, carefully stepping over faults in the tile, imaginary pools of thought lava, and other kinds of nonsense. She probably charged her phone before bustling back into the kitchen to check on the rice. Was it humanly possible to be any more of a loser? At my rate, I doubted it.
A persistent guilt gnawed at me. She did not owe me any of her time. I do not know many people who do. Besides, she probably had enough on her plate. She had a whole family to worry about and other undergrads relying upon her mentorship. This was college. Me? Me? Where did I fit in?
At least, not for a while.
Relationships, like most things in life, are experimental. Things are clunky. I remember, though not exactly when, lamenting over how self-absorbed I must have seemed. The exact details are a bit fuzzy.
I mean, this could have been while I was going down some stairs in the main library. Or perhaps more realistically, during one of my compulsory 3:42am strolls around physical plant.
Anyway, the point is this: I had an opportunity, and I blew it.
Someone who did not have to, who certainly did not owe me any of her time and good graces cared about me. She cared enough to call, again. To see if I had eaten. To have me hear a voice outside of my own head. She cared enough about me to keep calling, even though I showed no sign of letting up on ignoring her. After all, I was a loser. I deserved to be quarantined. Death due to splinter-related injuries or following a stranger into a cloud was one thing, and maybe just as well. But I would not be able to live in myself if I ruined someone like Alisa.
For a while, I wouldn’t let myself feel that I merited any kind of positive attention. I thought I—or “my case”, as I’d taken to referring to myself in the third person—was too much to handle. It was my life. It was my responsibility to get my shit together. Lots of people had their shit together or they were at least acting like they did. Waking up, going to class, staying in class, doing homework in the libraries, finding on-campus jobs, keeping their on-campus jobs, having friends, having fun, having a life outside of four walls. Having some kind of existence memorable beyond the campus infirmary or neighboring county hospital. Having a chance to be out in the world, all day. They had figured it out, or were in the process figuring it out. Why wasn’t I? Why couldn’t I?
As a mentally ill person, I am constantly reminded how “un”usual I am: unworthy of higher education, unfit as a student, unstable as a whole. There are people, after all, with real problems. Who am I, with my hoard of baggage, to derail support from where it’s rightfully due? What plane did I think I was about to board?
Or, as a wary professor once asked: “Why are you still here?”
Often, I find myself hobbling within a power-laden nexus of institutional authorities and health providers. Too frequently is my voice as a patient ignored. Complicated by my standing as a woman and person of color, my perspective has often been dismissed for belonging to someone unable to comprehend the gravity of mental illness.
I have been, and may always be, at a general dis-ease. I cannot fathom a time I was not worrying about not having enough stuff to pull my hair out over.
I have been sick for a long time—almost as long as I have been in school. Consequently, my sense of self is (however erroneously) linked to how my health struggles impede my academic progress. I can’t tell you how many times I’ve had potential opportunities, resources, responsibilities, and positions nicked right underneath me…all because of some perceived notion of my well-being and overall capability. (That, or a STAY (FAR) AWAY sign I did not realize I had glued to my forehead.)
I may never be a traditional student. Thankfully, unluckily, whichever—I am fast losing interest in becoming one. But I might always be ill. Pockets of astounding support—an unfortunately unusual feat—have afforded me access to reasonable accommodations and allowed me to remain a full-time student, both in college and now. My best memory of college is time spent with people who saw something in me I still squint at. My friends—who just happened to be faculty and staff members—brought me soft-cover books while I was hospitalized, defended me from nay-sayers, and, left Tupperware filled with goodies on my front doorstep, knowing that, at some point I’d have to leave my room—even if it was to throw out the trash. I was invited into their offices, homes, their families, and their hearts. They also shepherded me into the guild that is graduate school. Support is frustratingly important, for all groups involved. When it exists, and it works, it is like magic. It’s the stuff that comprises the very best of so many academic catchphrases, sandwiched alongside friends “diversity” and “inclusion.”
My college helped me create a medical, political, and bureaucratic network around my (however complicated and unstable) access to care.
The same, however, cannot be said for individuals beckoning from less privileged positions. As a graduate student at Northwestern University, I am still “here” because I, and those whose stories parallel mine, deserve to be. I am still “here” because the level of social inequality and dis-location between the ill and the purported technologies available to lessen their suffering has made active participation in their own convalescence a quiet theatre of war. I am still “here”, frankly, because we need to be.
Much, though not exhaustively, has been said about academia being an ableist, disabling meritocracy . But it’s also a place that generates many of the comforts—places to meet, ways to connect—that I hold so dearly. I remember attending my first public lecture, reveling in the familiar truth of hearing attorney and activist, Melody Moezzi, talk excitedly about the time she tried jumping off the roof of the public affairs building. In the back of that crowded lecture hall, I rejoiced.
I found a(n)other crazy one.
And if this was the kind of place they were hanging out in, I was bound—determined—to find them all. I poured over stories of recovery, hoping to wave to myself between the lines.
Perhaps as illness matures we learn, or resign ourselves, to being a bit less apologetic about its nature. I have grown imbued with the notion of bodily betrayal and what this means (and may mean) for me as a student, employee, and overall disabled person. My stumbling into disability studies was a revelation. It continues to both astound and humble me that there are real people—scholars, advocates, clinicians, patients, anarchists, and the like—who mingle inter-professionally to grapple with issues of illness, identity, and value. With the help of friends like Alisa, I have uncovered ways to think about my experience(s) in a way that made me feel less like a loser and more like the real thing. I found disability studies as a revelation, a homecoming of sorts. A discipline in comparative youth yet one mature enough to dare “negotiate the academy.”
As a budding medical anthropologist, relying on the dynamic interdisciplinary nature of disability studies makes theoretical sense. Within psychiatry, I am most engrossed by the discipline’s multiple social embodiments: as a contested mode of medical inquiry, a technology of power, a site of resistance, and a simultaneous locus of suffering and medical support.
I want to study health care and its politics at the intersections of illness narrative and scientific literature, paying particular attention to the reflexive transformations of people into patients. I consider not only how “symptoms” are overcome, but also how (and perhaps why) they emerge in the first place and whether they can be incorporated into the ways in which one navigates the world.
Individual solutions to collective problems are difficult and dangerous. I aim not to shame a scientific field nor discredit advances in medicine and public health, but to examine how medicine does and doesn’t work and who it serves and why.
My concerns exist beyond me. I have danced in a disability masquerade enough to avoid obvious detection—for now. As someone presumed to be sane—
or, as my therapist once put it: “Are you sure you’re my patient? But you’re so well put together? Hell, you could be on the other side, working with me!”
—I am cloaked under a corsage of privilege. Most clinicians have deemed me a non-threat. I am not expected to erupt in a fit of homicidal rage. And while some may visibly become nervous when I board an elevator, it probably has to do more with the color of my skin or the size of my body than it does with me being en route to my next appointment.
What remains most challenging, however, is divorcing the idea that my value is contingent upon how well I manage my illness. There needs to be a willingness to consider individuals who share my position as valuable simply because we exist. Doing so requires a paradigm shift of seismic dimensions—a conceptual and practical reconstruction of productivity and the ways we interact meaningfully with ourselves and the worlds within and around us.
I am here because a few people saw something worthy of their support, even (especially) when I did not. School is hard. Things are clunky. I am figuring it all out. I struggle. Supporting people who are unconventional learners/educators in ways that do not make the disabled feel guilt-ridden for requiring accommodations or fearful to ask for help.
This lesson-in-progress will most likely envelop my life’s work. But to be an agent of effective social change is to delicately weave dialogue and deed.
I have found a home—a place where, as I do, I might become well—in academia. A place where I might feel welcome. Coursework have been productive lenses through which to (re)imagine notions of the mind, body, health, and illness. There is, within and beyond the academy, a consistent (and inaccurate) deployment of binaries to understand medical phenomena. We seem to forget that such praxes exist in a multi-faceted social and political context. Categories related to identity are inter-reliant and any separation among them is crude, at best. A transform(-ed/ative) academy could advocate for the consideration of medicine as an activity and health as an axis.
I worry if the existence of the ill is intrinsically traumatic and irreparable. How can the very institution(s) that liberate(s) one population oppress others? Who (and what interests) does such a system serve? How should we support learners whose very ways of being are biomedically challenged and socially disvalued? Could possibilities of recovery soar beyond rhetoric surrounding treatment and compulsory able-bodiedness? Of utmost worry is whether these questions can encourage culturally-inflected work with the “unhealthy” body…and whether these questions are even enough.
Curious, compelled, whatever—I cannot really help but notice holes too deep not to sink into. I wonder if I can ever fill just one, if I will remember to be hopeful, if I would recognize hope even if it waved to me.
I’ll try, anyway.
Jones, Nev and Robyn L. Brown. 2013. “The Absence of Psychiatric C/S/X Perspectives In Academic Discourse: Consequences and Implications.” In Disability Studies Quarterly 33, no. 1 (2013). doi: 10.18061/dsq.v33i1.3433.
Kerschbaum, Stephanie L., Laura T. Eisenman, and James M. Jones. “Introduction: Disability, Disclosure, and Diversity.” In Negotiating Disability: Disclosure and Higher Education, edited by Stephanie L. Kerschbaum., Laura T. Eisenman, and James M. Jones, 1-12. Ann Arbor: University of Michigan Press, 2017. www.jstor.org/stable/10.3998/mpub.9426902.4.
Siebers, Tobin. “Disability as Masquerade.” In Literature and Medicine 23, no.1 (2004): 1-22. doi: 10.1353/lm.2004.0010.
Walsh, Lisl. “Academia is Irreparably Ableist.” Medium. July 11, 2016. https://medium.com/@lislanna/academia-is-irreparably-ableist-925fb33721ff.
Original photo by Hulki Okan Tabak.