Category Archives: Health Care

Consider this a warning.

I want you to know you’re killing me.

You always were. It isn’t news. But assume your postures of defense if you think I’m wrong. Tell me you’re protecting the economically disadvantaged in dire straits, stripped of health care because they can’t afford it, and what could I possibly know about that; and I promise, I promise, I won’t tell you in return how I teach a 4:4 load, tutor four hours a week, do freelance editing, and still have to ration out my doctor visits with a careful hand and weigh the costs of medication against the costs of my next meal. I won’t tell you how before ACA I had to ration physical therapy visits because of lifetime caps per body part and condition, or that I suffered pain like slow implosion for years before accepting a prescription that made life livable, because I couldn’t afford it. I won’t breathe a word about how all the proposed cuts, if I choose to live with them, will leave me with the kind of debt you can’t breathe through, like what ought to take your breath away, but won’t, the knowledge that millions like me or worse are imperiled by you.

Today you’re everywhere with your circle-jerk applause and sound-bite rhetoric you can easily repeat. Some kind of Yes, calm down, you’ll be fine, there are protections in place you know but really, you should know better, you should have taken better care of yourselves, eaten better, exercised more, stayed away from treatments your insurance wouldn’t cover, stopped getting sick, stopped aging, stopped having babies, having sex, moving, breathing, stopped your beating heart, if you knew you couldn’t pay the price.

What’s left that we can afford, but suicide, or murder.

You make it our civic duty to go off our meds and buy guns we’ll gleefully wave at anyone who is or isn’t there. Drown our unwanted in the bathtub like feral kittens. Put our dependents on the streets when they become too expensive. Die at our desks of chronic illness, cancer, heart disease, dementia, stroke, pneumonia, the flu. Decay into our landscapes. Hang ourselves high, where the warlord can see us and count us part of his triumph.

This is what we’re calling the new normal, or at last, a victory. That death is less ruinous than what you propose.

You know who you are. You are the ones who will denounce the above with apoplectic rage, but just tell me how it’s anything else. You know. You aren’t stupid. You exist to be unaccountable. You are the waterproof bandages with which we seal our outcry. You fashion greasy casual nooses and jeer as we walk by, all righteous fury because the world isn’t deepening the divisions you need. White/black. Able/disabled. Rich/poor. Living/not worth keeping alive.

You like it this way.

But we aren’t stupid, either, and we are not resigned. You’ve always been here, knives out and aimed at our guts, but it’s not for nothing that we’ve survived this long. We have learned how to outlast, with all our wits about us, we know that the kingdom you are building to map the heavens is habitable by monsters alone, that the closer you come to this 1:1 reflection the more you reveal that the gods as you spell them are ugly and false. Try to stamp us like cockroaches to primordial ooze, but we’ve always been oarfish, swimming vertically and forever, the messenger you are always killing before we expel even a breath to recount the error of your ways.

There is no heroism in murder.

Wield your signing pen against us like the Reign of Terror’s guillotine, and I promise, I promise, you will breed a nation of dissidents, a pantheon of deities rising from below, where we hail from in all our diversity, too far down the ladder for you to ever grasp.

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Salting the earth with hypocrisy.

It’s the last week of classes, and my course announcements, as usual, have stacked up like this:

Hey class,
Due to travel hazards/laryngitis/an ongoing family emergency/my sick cat, I will be unable to attend class today. As such, I will record a lecture in advance of our meeting time and hang out in the chat room during class to field any questions you might have about the material. As always, you can email me directly with comments.
Best,
Prof. Mani

Also featured are stories of delays: #NJTransit and #PennStation have trended at least twice this month due to massive breakdowns, delays, and crowd control issues. After a NJTransit train derailed on Monday, April 3, damaging switches and rails, train delays and cancellations, platform crowding, and overflow trains infected the entire week, including the Tuesday and Thursday I commute to Rutgers for a 2:2 course load. At Penn Station, Amtrak, LIRR, and NJTransit were all affected. According to news reports and angry commuters on Twitter, the less crowded Penn Station’s platforms and trains looked like this:

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That’s hours of delays, jostling shoulder to shoulder on the platform, followed by a standing-room only commute for an hour on the Northeast Corridor.

Thousands of commuters were doing this, so I couldn’t say it wasn’t doable. But I didn’t do it. I cancelled my Rutgers classes that week, citing only my concerns that I wouldn’t arrive on time, and we wouldn’t be able to hold class anyway.

This was true, but it wasn’t the real reason.

Coincidentally, after I returned to campus I heard from a former student that I have a reputation for canceling, and I’ve been trying to dismiss my concerns about it because I’m not sure I get to be defensive. Like a good faculty member, I am dishonest with my students about my reasons, despite insisting they be honest with me about theirs. I lie because, as long as I can power through without dying mid-lecture, the truth sounds like an excuse. I’m in pain. I’m exhausted. I just can’t.

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#DisabledAndCute Fibromyalgic Reporting In

cuteanddisabled

Here I was yesterday, in my office, feeling cute, feeling my invisible pain acutely. I’m drafting this today, on my phone, on my commute back from physical therapy. Today, I have none of the feeling I did yesterday. Yesterday, I had none of the confidence to contribute to the hashtag #cuteanddisabled, which I saw on Twitter and badly wanted to be a part of. It was a moment of visibility for a community I identify with, but one that is frequently socially determined by visual assessment. According to the eyes of our dominant culture, I pass for able-bodied. I have the privilege of being normatively cute with presumably minimal effort. When pain shatters the illusion, normate society recoils, cute suddenly synonymous with espionage, the cover of a less-than-functional human stealth-walking among you like I belong.

No one has to tell me I don’t, I know by our emphasis on vision that I belong nowhere.

Let me deconstruct.

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Anamnesis with 15 Cites.

How to work when the pain is so great it slows even time? Indefatigable voice curling around and in on itself in the gut/womb space where I’ve put it down, you rise when and where I deny my body most: in the clinical waiting room; at the doors of the academy. [1] You are more familiar than I can say of my own touch on my own skin, as unpredictable a receptive surface as it is. A long time ago I knew that the point of my elbow will nervously caress the back of my throat, my right leg laid horizontal is a spire of tattoo ink run into my big toe.
The institution would have me call it “burning,” “aching,” “swelling,” “throbbing.” The same staple words of bad erotica, turned sterile to suit the bodiless worlds of hospital and university. [2] A carefully crafted, scientistic semantic field that wrongs patients, experts, scholars alike.
Really the institution would say I must be confused, because pain doesn’t typically refer like that.

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“Artistic integrity is a problem for you.”

Dream Log: 8/21/16

If this project were called “creative writing,” I wouldn’t question my instincts. Because it’s called “research,” I constantly feel the oppressive shadow of the Ivory Tower: Western, masculine, rational and orderly, demanding I leave my body and its (feminine, chaotic, threatening) intuition behind if I intend to progress further (Detienne & Vernant, 1974; Wilkinson, 1997; Metta, 2015). But the novelistic attitude and narrative inquiry exist on the same plane as ethnography. The use of fictional tactics like narrative plot, composite characters, and theoretical fiction are less alien to social science than (I think) I’ve been conditioned to think (Ellis, 2004; Gibbs, 2005; Spry, 2011; Smith, 2013). Footnotes and other radical citation forms abound in the writing of authors like Carolyn Ellis, Art Bochner, Anna Gibbs, Phil Smith, Aliza Kolker, etc., all of whom seem to recognize that parentheticals interrupt the narrative experience. The line that keeps recurring in my head is, Artistic integrity is a problem for you, but why does “research” mean I have to resist, or edit, or denigrate the forms that emerge as most effective for any project in question? Like Tanya Wilkinson (1997), who recovers her gut epistemology through dream analysis, I find myself asking all the time, Why can’t I bring my sick woman’s body and its particular brand of metis back?

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This is being(-in) a horizonless world.

For a half-hour, my left hand becomes the hand that commands the heavens. Close it, fiercely, against my thigh and my whole body is distilled to this one point, a fist bristling with energy, five invisible skins thick, resonating with the air. Open it, and forces flow in all directions, the visible skin of my left ring finger visibly roiling under the pressure of sudden, unasked-for godhood.

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The Author Is In Pain. #AffectWTF

Written for and performed at Affect Theory Conference: Worldings, Tensions, Futures, “The Author is in Pain” is a project I consider my first foray into performance art scholarship, as part of the conference’s “Wreck the Format” stream. It is the first fully realized expression of my experience in the emergency room a little over a year ago, peppered with experiences in and out of medical and academic institutions. Inspired by scholars and artists including Elaine Scarry, Brian Massumi, Mel Y. Chen, Lisa Blackman, Ann Cvetkovich, Margaret Price, Petra Kuppers, and Leslie Jamison (in addition to being saturated with Foucault), this piece is intended alternately and all at once as a confrontation, an interrogation, a confessional, a demand for accountability, a request for aid in finding new ways of seeing and speaking with regards to invisible pain. It is my hope that this destabilization of typical perception can be extended to other forms of “passing disability,” and that it may serve as my own (if not others’) entry point into the dream of a language more common to us all, one only achievable if we recognize and work towards it together.

I am indebted to my close friend Sara Fuller for serving, sometimes simultaneously, as massage therapist, painter, photographer, and video editor for this project; without her, I wouldn’t have been able to realize this series of provocations as well as I have. I am also grateful to fellow Ph.D. student Fredrika Thelandersson for filming the presentation when it was delivered at the conference in October, which is why you’re able to access it now.

Let it speak for itself.

The transcript, with elements that do not translate to oration or visual performance, can be found here.

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#Biohacking Part II: Or, My Life in Magnetic Vision

After writing that last post on biohacking, I’ve been thinking more about the body as a (media) system, or a system of language, with internal mechanisms keyed to its survival. As a friend put it, “food is a medium through which we communicate with the body,” and to add to that, food may be a way for the body to speak back to us as well.

Is everything we do to the body communication?

I’ve lurked sites like BME for decades, long before I got my first tattoo, while I was figuring out what parts of my ears to pierce, when I was working up to scarification. It was on BME that I first read about magnetic implants, when I was still in college and afraid to relinquish control long enough to allow an artist to exact permanence on my skin. The procedure involved inserting a magnet deep into a finger (or other body part), after which the magnet would move in response to electromagnetic fields and transfer that sensation to the surrounding nerves. The result: an anatomically internal sense of the electromagnetic spectrum as an extension of touch.

I had zero diagnoses at the time but I felt disabled enough that I wanted this, badly.

The procedure wasn’t perfect when I first read about it. Dip-coated silicone coatings could easily degrade, exposing the body to dangerous rare-earth metals and compromising the magnet. Shatter the magnet and you risk the same toxicity, migration, rupture, nerve death. I remember reading about Shannon Larratt compromising his magnets and having them removed. I’d seen more gruesome images than those photos, and his removal went without a hitch, but I could imagine a foreign body corroding under my skin, killing my fingertip sensation utterly, because I’ve never been so lucky.

I was diagnosed with fibromyalgia a few years after I read about magnetic vision. I started modifying myself that same year. Everything on my body doubles as a commemoration and a teaching tool, and certain modifications—piercings and scarifications in particular—offer new ways of interacting with and experiencing the world. After all that, plus living with a condition that already complicates my sensory experience of myself, others, and the world, implanting a tiny magnet into my finger didn’t seem so terrifying.

Exactly three weeks after I had the procedure done, the magnet is no longer a foreign body vibrating alongside my finger pad. It is my finger itself. It is my nerves, jangling, when I run my microwave, shouting an interruption when I walk through security gates, humming in C major to accompany my electric toothbrush, reminding me that there is so much more to the world than can be seen or felt by the body as we are born.

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#Biohacking Part I: Thoughts on Dietary Practice

When I find myself drowning my instinct is not to surface, but to swim deeper. I tend to operate at full capacity: three different undergraduate courses in two different states; drop-in tutoring on what would have been my off day; that god-forsaken memoir that accuses me every day of having given up what makes me truly happy. In theory, my dissertation proposal. In practice, an aggressive self-care regimen that, over a month in, appears to be working, and has gotten me thinking quite a bit about biohacking.

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