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Archive for the ‘Crip Politics / Disability Politics’ Category

Reflections on Disability, Capitalism, and Time

In Crip Politics / Disability Politics, Philosophical Musings on March 23, 2015 at 9:00 AM

“Don’t worry, it’ll happen. Just give it some time.”

“But you’re so young. You’ve got plenty of time to try things out.”

“We’re young, though. We’ve got plenty of time before we have to deal with that.”

As a single young adult with an invisible, chronic degenerative condition, these are some of the most unnerving comments that I hear all the time, however banal and unordinary they seem. I hear them especially as a first-year graduate student, a time when the possibilities are supposedly vast and unpredictable, if not entirely “endless.” And as a twentysomething, I have these comments directed at me both from other young adults as well as those who are older, often with the assumption that age is inherently synonymous with a range of life opportunities that are only possible because of time.

To me, such comments are illustrative of how a certain normative standard of temporality is so consistently invoked, rendered so commonplace, that it is beyond noticeability or scrutiny. Unless we’re confronted with clear, visible instances of a bifurcated futurity in youth—say, someone with a terminable health condition—we generally go about our day with unquestioned and prefabricated assumptions about how human life should unfold across our linear version of time.

There are, of course, obvious exceptions and counterarguments, such as that neither youth nor old age are the same for everyone, across all geographical and cultural contexts. We see instances of how standardized periodizations of age are called into question, for example, when examining the culturally divergent definitions of ‘adulthood’—of what it constitutes and when it starts—or the social construction of adolescence. But the dominant time and age-related assumptions are nevertheless there, codified into our social institutions and reproduced in our colloquial expectations.

Although we are conditioned into thinking of it as an absolute and natural given, a mere backdrop against which social events unfold, I would agree with others that time, like space, is socially constructed. We’ve made decisions on how to read it–say, along axes of terrestrial movements using a sexagesimal system and a Gregorian calendar—and how such time is to be “spent” (an allusion to the naturalized connection between productivity, consumption, and time). Histories are made and remade, and our relationship to them shapes our sense of the future as well as our identities and experiences in the present.

And as with other facets of our social existence, the political economy has been instrumental to the ways we conceptualize time, humanity, and the trajectories of life. It’s worth remembering that the production of our first time-telling instruments was driven, in large part, by the needs of agricultural production. The advent of capitalism accelerated the changes as efficiency, productivity, and time became especially intertwined—a fact that was well noted by the so-called founders of sociology, particularly Marx, Weber, and Simmel.

I bring up this social history to highlight the seemingly arbitrary nature of how we temporalize life into discrete parameters and periodizations that are far from “natural.” Capitalist time has performed an incredible feat in measuring virtually everything against time-based markers of efficiency, a fact seen most cruelly today in the way neoliberal logic uses quantifiable metrics to convert schools into test-taking factories, bodies into malleable overtime engines, and brains into calculating computers. Even in our dominant allopathic healthcare, the logic of capitalist time is used in the treatment of bodies as machines, with an increasing trend toward “specialization” turning organs or bodily systems into isolatable cogs and pinwheels.

For people with disabilities or chronic conditions, such parsing of time under this logic continually works against us as our bodies are said to “betray” us. We internalize the idea of failure when we can’t all measure up to the same standards of productivity and efficiency, and rather than devoting our limited energies to living life within a still-enriching range of possibilities, we are punished through de facto institutions of punishment and control: incarceration, hospitalization, or a regulatory “welfare” and its inordinate criteria of eligibility. (Those institutions, as it turns out, have their own alternate temporalities that involve “checking out” from the typical spatial and temporal conditions of the working masses.)

That said, when speaking of the ways in which time doesn’t “work in my favor,” I speak of the perverse ways in which social institutions and everyday expectations of normalized life trajectories make it difficult to live life with my particular set of abilities, skills, and interests. Being coerced into making decisions that align with certain pre-planned futurities, I find it difficult to peg any decisions around future-bounded notions of “climbing the ladder” or “starting the journey” of a career—not to mention those temporalized notions of partner-finding and family-making—when I can’t even be certain of my ability to wake up or pull myself out of bed the next morning. Living with a degenerative condition, I exist in a much different temporality marked by daily, sometimes hourly, unpredictabilities–a temporality that relates unevenly with the presumed “willing and able” logic of long-term work projects or social expectations. Given the nature of the condition, I’m unlikely to see the sort of “rewards,” like certain job opportunities or social accomplishments, that capitalist time tells us to wait for.

Sure, we can talk about how such “uncertainty” is true for all of us, that we can all get struck by a bus tomorrow. But with a disabling chronic condition, those questions of the future are always weighted against the very real possibilities of a changing body in an unaccommodating world. Although I have dreams for the future like everyone else, when I’m reminded of how my in-pained present was the future at one point, I’m also reminded that the future is far from being a limitless or delayable abstraction.

Indeed, it is this tendency toward ‘delay’ that permeates our social life that I see as pivotally hinged to the logic of capitalist time. We justify excessive and exploitative work conditions in the present using obscure promises based on ‘delayed’ rewards and ambiguous futures. (“Don’t worry, you continue working this hard, and you’ll get there.”) We ‘delay’ our attention to issues like climate change or death-promoting destruction in the global south, pointing to all the work that needs to be done before we get to those luxurious issues. If we only had all the time in the world, we would provide that helping hand.

All of which leads me to wonder: why are we so busy in the first place?

Oh, right. All that work.

Clocks have become the universal metonym for time. Even the notion of time "running out" uses a particular able-bodied ideal measured within a capitalist frame.

Clocks have become the universal metonym for time. Even the notion of time “running out” uses a particular able-bodied ideal measured within a capitalist frame.

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The Overwhelming Present: On Having Too Much To Write About

In Chronic Pain, Class Politics, Creative Writing, Crip Politics / Disability Politics, Identity Politics, Intersectionality on May 26, 2014 at 12:55 PM
"It burns the thing inside it. And that thing screams." - "An Agony. As Now." by Amiri Baraka

“Cold air blown through narrow blind eyes. Flesh,
white hot metal. Glows as the day with its sun.
It is a human love, I live inside. A bony skeleton
you recognize as words or simple feeling.”
– “An Agony. As Now.” by Amiri Baraka

 

Over the past year I’ve come to realize that my constant hesitation to write emanates not so much from anxiety or deep-seated insecurity, but from an overwhelming sense that there’s way too much shit to write about. If you’ve ever had to make a list of all the possible topics you could speak, write, or blog about, then you might have a sense of what I mean here.

Just the other day, heading back home from work in an hour-long trek from one part of Brooklyn (Bushwick) to another (Sunset Park), I was engaged in my most common activity: sitting, thinking, dwelling on issues that seem insurmountable. Even indescribable. Just the thought of putting these experiences and thoughts into writing was exhausting.

******************

For me, there’s an almost-insurmountable catatonia that comes with writing about the struggles of the everyday. Where to begin? After all, the elusive present is hard to understand without an acknowledgment of history. Do I cherry-pick old historical events, like the wave of destruction that swept over the Arawaks of the Bahamas when Columbus landed his avaricious gold-seeking feet? Do I speed through Manifest Destiny and slavery-fueled industrialization? Or the reproduction of urban savagery a lá Robert Moses and red-lining and… Or do I begin with what I’m seeing right now in 2014: the drastic efflux of white (with the ever-so-often black, brown, and yellow-hipster) faces walking past me at the subway stop near my job.

Goddamn. In a mere six years, the social landscape of this neighborhood has changed at a terrifying pace.

A view of Bushwick (foreground) and a violet-lit Empire State Building (background). Neoliberal urban colonization (aka gentrification) has a surreality to it that is hard to capture solely with words.

A view of Bushwick (foreground) and a violet-lit Empire State Building (background). The multi-story condo to the left was opened just a few years ago and already suggests near-full occupation. Indeed, neoliberal urban colonization (aka gentrification) has a surreality to it that is hard to capture solely with words.

 

In a world with too many wars to fight, to many colonnades to dismantle, reality is jarring. And at the end of the day, here I am…sitting inside a train. Zig-zagging my way out of Brooklyn, then back again. Joining up again where the political meets the personal.

I still have to deal with soul-crushing limitations. Trying to live like a revolutionary in a neoliberal age, my mind slumped after a night of teaching in impossible circumstances. And as much as I wanted to scream, a bourgeois sentiment in me also wanted to make demands and compelling critiques. But the number of topics I could potentially write about (that were also personally embroiled) were staggering:

  • I can write about gentrification, urbanization, and settler-colonialism in the United States. Using the example of Bushwick or Sunset Park to demonstrate how gentrification—a term that has been popularized in the left and right to the point of losing considerable political valence—is really just another iteration of white supremacist, urban colonization. Even in cases where the gentrifiers and the gentrified come from similar ethnoracial backgrounds, a similar logic of invasion, plunder, and proselytization operates, often with indirect repercussions to communities of color.
  • I can write about the linkages between police brutality, mass incarceration, and the reciprocal relationship between carceral regimes and capitalist development (including criminalization and its association with gentrification in Brooklyn).
  • I can write about the struggles of adult education programs, or the constant struggles and physical and cultural violence experienced by my transnational, multi-status immigrant students. The unique, indescribable experience of being a teacher at the crossroads.
  • I can write about the insidiousness of the non-profit industrial complex (NPIC), its ableist romanticization of long hours, commitment, and passion. Its coercive management of dissent. The funneling of revolutionary momentum into the rat race of data-driven bureaucracy.
  • Then there’s the fact that I often feel like I’m being ping-ponged between the NPIC and the (bio)medical-industrial complex. As if I wasn’t already drowning in paperwork and numbers, I also have to keep track of my co-pays, premiums, medications, and insurance policies. I have to manage a deeply crippling, mysterious condition (chronic pain) layered upon another (multiple sclerosis). I have to deal with doctors’ racisms, insensitivities, and general misunderstanding. I have to deal with pharmacists and insurance reps and union reps and social workers and disability lawyers. More days than I can count, I am filled to the brim with sadness and fury and hopelessness.
  • I can write endlessly about what it’s like to live with pain, all forms of spiritual, existential, psychological, physical, collective, or intergenerational pain. And the wisdom that pain provides.
  • I can also join the graduate student-blogger bandwagon and write about my detachment from academia (here comes another industrial complex: the academic IC). I can write about my alienation as an economically precarious “millennial,” or write about intersectionality and identity through the lens of a crippled, queer cisgender working-class man of color.

For me, it feels like the possibilities are endless. I can write substantially about any and all of these things—not simply because they seem fascinating, but because they are integral to my everyday material experience. But unlike those who have the luxury of waging war in one or two battlefronts, I’m living in sheer and utter political cacophony, living with the threat of debt, hunger, and detonations of pain. I’m forced to deal with an amalgam of interrelated injustices, not simply an isolated cause or issue of the moment.

******************

Fact is, no one embodies single-issue politics; but for some, the layering of oppressions is too adamant, too imperious, to conveniently omit in any writing of personal experiences. For how have I become the sort of subject, the sort of human that I am today were it not for a constellation of experiences that is simply more than the sum of its parts? While disembodied scholarship coercively tempts us into partitioning our lives like specimens under a microscope, life teaches us how beautifully, sometimes agonizingly, complex and unpredictable the world must be.

Glancing back at this list, I am reminded of how overwhelming it all is. It is overwhelming to be alive today—and most of us ignore the telltale signs (sometimes out of necessity). Living through the tyrannies of a globalized capitalist order, sensing that the orderliness of modern civilization, urbanization, and economic development is actually more mythology than a worthwhile endeavor. Putting our bodies through cruel regimens of poorly cooked, chemical-ridden foods and substances while working until we literally drop. Or resorting to a jaw-dropping level of consumption of entertainment, drugs, and alcohol to deal with the pain of isolation. Or lest we forget the weight of ruptured, dismembered, or even annihilated communities and histories.

******************

Reflecting on the obstacles to produce through writing, I recognize how frighteningly obvious some of the “internal” ones are. With my eyes looking straight ahead to an impending life in grad school, I’m reminded of what Andrea Smith has written about with respect to the academic industrial complex:

“A phenomenon that results from academia’s myth of meritocracy is that scholars feel an undue burden to prove their brilliance. They can never take short cuts. They cannot publish anything unless it is perfect. Consequently, it takes many scholars an inordinate amount of time to finish their work because they suffer from excessive anxiety attacks as to whether or not their contributions are going to be sufficiently brilliant to warrant their publication.”

This resonates: I can be a perfectionist and hesitate to print or publish anything that doesn’t conform to a standard I’ve created for myself. I am also fearful of being “too public” with my thoughts, emotions, and experiences, and fear their resultant social repercussions. I fear being stigmatized, or analyzed, or romanticized and co-opted by well-meaning liberals. I also fear not articulating myself in a way that reflects how I truly think or feel—something that becomes particularly salient in my life with chronic fatigue. Even as I write this, I am constantly redacting my statements, cognizant of the critiques (feeling more surveilled than an object of the Panopticon state)….

Of course, the joint effect of these fears is to avoid writing altogether, with only an inkling that perhaps one day I can do so at a difficult convergence of free time, good health, good energy, and “feeling inspired.”

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So, to what extent are these barriers psychological/individual vs. systemic? And to what extent are these barriers that I have agency over? I don’t think I’ll ever develop a satisfying response to those questions, but I’m very much aware of how I’ve come full circle since my very first blog post on overcoming writing paralysis.

I still believe in the importance of writing, and speaking out against all forms of violence. I even see the importance of writing within political projects, even if those projects cannot be reduced solely to an ideological exercise.

But it’s fucking hard to put all the pieces together, to synthesize an amalgam of experiences that often feel too disjointed and irregular and incredibly messy. Sometimes it’s too much work to synthesize and create a story that fictionalizes a union of the world’s haphazard parts.

And while it’s generally hard for most people to find the time and space to write, the challenges are exponentially worse when you have to struggle with pain, fatigue, and brain fog.

Yet, none of that is to render invisible a more basic conundrum: There is too much shit going on in the world. There is too much shit going on in my life. There are too many fucking things to write about.

Yes, there is way too much shit. 

View of Chinatown from the Manhattan Bridge.  What life in the city feels like to me, all at once: ever-moving, exciting, imprisoning, chaotic, indecipherable.

View of Chinatown from the Manhattan Bridge.
What life in the city feels like to me, all at once: ever-moving, exciting, imprisoning, chaotic, indecipherable.

How Chronic Pain Shook My Faith in People

In Chronic Pain, Crip Politics / Disability Politics, Identity Politics, Life with Chronic Illness on August 14, 2013 at 8:59 PM

living with chronic head pain

When living with chronic pain, it’s funny how you can find joy in the most mundane things. Like being able to go out for a walk. Or waking up not wanting to squeeze your pillow in god-forsaken agony. Lately, I’ve been feeling even well enough to socialize. That’s a big one in my world.

Except that even socializing is fraught with obstacles. And I don’t mean those of the actual living-with-bodily-pain kind. I’m referring to the sort of inertia that needs to be overcome when you’ve been as socially reclusive for as long as I have. Having never been a social butterfly or a happy-go-lucky type, being struck with something like chronic pain makes the task of socializing all the more cumbersome. Here’s a list of obstacles that I need to overcome in a social encounter, many of which are quite common regardless of your current health status, and some of which many of you will never deal with if you’re lucky:

  • Explaining, in spite of your bourgeois academic credentials, that you’ve been unemployed for four months and (even worse) haven’t so much as attempted a job search.
  • Explaining that, yes, you still live in your parent’s basement in an area you actually despise. And that, in fact, you don’t get along with your parents and actually hardly ever talk to them.
  • Explaining why, while technically living in a large metropolis, you hardly ever go out—even on weekends.
  • Explaining that your last job was a complete shit show and that you lasted as long as you did because of health issues.
  • Explaining to certain people why you’ve lost as much weight as you have. Or, to certain other people, why you’ve gained weight. And aggravatingly trying to remember who saw you when.
  • Explaining the trajectory of your condition(s) to people you haven’t seen in years, sometimes even months.
  • Explaining why your “condition” does not conform to any conventional understanding of illness. Whether or not they completely get it, you need to ensure they at least understand that it’s invisible, hard-to-treat, and incredibly unpredictable. (This is the world of chronic pain, folks.)
  • Explaining that you’ve been too hopeless or nihilistic at times to dabble in dreams about “the future.”

All of these interactions, of course, pertain to dealing with people I have met previously and actually like. This is not to even mention the various ways in which you have to tread inexcusably naïve or insensitive questions like, “Have you tried [treatment of choice]?” or “What’s your plan now [that you’re unemployed]?” Needless to say, the interactions with people you don’t like, don’t know, or both, are even worse. (And chances are, I’ve likely fantasized about the hundreds of ways in which to cause these hateful, hateful people the utmost displeasures.)

None of this is to abnegate the incredible privileges I’ve had (e.g. a roof over my health, economically supportive and unquestioning parents, and yes, my bourgie college degree).

But living with chronic pain and chronic fatigue really sucks. Really FUCKING SUCKS. Most especially the chronic pain. It makes the simplest, otherwise innocuous moments, like walking the dog, doing laundry, or making a trip to see a friend, incredibly difficult if not impossible.

And if you have politics like mine, you start to see how incredibly loaded even the most basic interactions are.

[A quick disclaimer: I’m definitely not apologetic for not making an effort to stay in touch with people. I have enough on my plate to deal with.

And, I ask myself: if they cared so much, why didn’t they make the effort to come see me? Perhaps they don’t think something as innocent-sounding as “chronic pain” merits the sort of attention that a truly serious condition does.  If you have this mentality, well, then, I say: fuck you.]

Outrage aside, there’s a sad part to this equation, which is the gradual (perhaps not-so-gradual) process of reclusion that whittles down your number of friends. To understand how this works, just think about the sort of nuisances someone with chronic pain likely has to deal with.

The fact that pain is “invisible” means people will absentmindedly demand or expect certain things of you, such as an expense report, a “light” conversation, or an ability to stand inside a bus. This can true even if you have other conditions that are visible. And although pain is typically thought of as being externally manifest when one makes classical signs of grimacing and such, even these gestures tend to be ignored by people (and most heartbreakingly by loved ones).

People with chronic pain typically need to work, commute, and buy groceries just like everyone else. They may even be very socially active. And you probably see or even know plenty of folks with chronic pain, even if you don’t know of their pain.

For me, “un-friendization” happened faster than I could have anticipated. It was partly facilitated by the fact that I live in a far-flung area of an already disconnected New York City, and partly by the fact that I fell sick during a transitional time in my life when I was still making friends (I was 23 at the time).

If the above list of obstacles resonates at all, it’s probably worth emphasizing that it is only specific to social, not physical, hurdles and is not inclusive of other issues that might make the already difficult process of “staying in touch” awkward or difficult (such as my queerness or ever-evolving leftist politics). It’s not even a comprehensive list within these parameters.

Having given up on a pursuit of connecting with “new” people (including potential dates), there are still challenges to just maintaining friendships. For sure, there are the obvious physical limitations: when you have an intractable, unpredictable hammer-like pounding pain inside your head, you’re grateful if you can even leave your bed to take a piss.

But even on those hard-to-predict good days, I’m likely not wanting to mess it up by having an intensely awkward and blood-boiling conversation with a “well-intentioned” friend who either 1) doesn’t know or 2) doesn’t get it.

All things considered, the whole friendship* thing seems hardly compatible with chronic pain. No doubt about it: it’s simply lonely as fuck. And unfortunately, this is a rather common predicament for people who have difficult-to-treat chronic pain.

It doesn’t surprise me at all when I read that depression and suicidality are substantially higher for us pain-afflicted folks. (And as far as long-term outcomes are concerned, it definitely doesn’t help that our “advanced” western medicine hasn’t found a reliable treatment for it.)

And before you think of some suggestion of “seeking out a community that understands,” maybe you should do yourself a favor and actually read up on chronic pain first. It wouldn’t be crippling, chronic pain if you could easily get up and walk/drive/commute to places where such supposedly understanding people exist. It wouldn’t be crippling, chronic pain if it didn’t leave you feeling powerless and voiceless at least some of the time.

So, yeah, I’ll continue to “reconnect” with people. But it’s with a certain level of acceptance that most of them will never get it.

chronic-pain-graphic

*To be clear, although chronic pain might make it hard to socialize, it’s definitely not impossible (given that the pain is within tolerable limits).

Also, chronic pain can also facilitate stronger ties to people you rely on and trust—even if it means losing those superfluous “friends” you only hung out with at the bar. This said, however, it could still end up making you hate everyone outside this inner circle of trust.

Why I’ll Never Get Married: On DOMA, Assimilation, and Pink Capitalism

In Class Politics, Crip Politics / Disability Politics, GenSex & Queer Politics, Identity Politics, Intersectionality, Racial Politics, The Revolution on June 26, 2013 at 11:59 PM

While many news outlets, mainstream and independent alike, were saturated with updates about the different Supreme Court rulings this week, I made some observations about something that was vastly more intriguing: people’s reactions. In my social terrain within the left-wing spectrum, it was the rulings over civil rights—the right to vote and the right to marry—that garnered the most attention and provoked the most visceral reactions. One day people clogged my inbox and news feed with catastrophic laments over the callous evisceration of voting rights for disenfranchised people of color. The next day were various rainbow-colored displays of elation and relief, with a minor undercurrent of radical critique over the conservative institution of marriage (the latter of which I’m a part of).

Concerning yesterday’s Court case, United States v. Windsor, I find myself ambivalent, and extremely annoyed, with the deradicalized, traditionalist politics it embodies. Enough so that I’ve finally felt it necessary to add my voice to the infuriating cacophony of voices that infiltrate the Web. The notion of marriage has never been a component in my dreams or imagined personal narrative, and felt so distant that I didn’t care to give it more attention than economic inequality and the impacts of disaster capitalism. I’m breaking with this instinct to avoid “equality” talk because I see very little representation of people like me in the cyberscapes.

Enjoy Pink Capitalism

Do you prefer your oppressive, chemical-ridden carbonated sugar-water in black, brown, or pink? The U.S. v. Windsor (2013) ruling certifiably marks an additional step in the mainstreaming of “LGBT.”

For one thing, the “marriage equality” movement centers around an over-decade-long multidimensional debate with a mind-numbing amount of variables and issues, such as the quandary over dominant social norms, the role of the State in arbitrating interpersonal relations, and the constructions of meaning of the most ambiguous of terms used by liberals: “equality,” “justice,” and “liberation.” The numerous debates and critiques over “marriage equality” speak more to the issue than I ever can, though I think it’s important to highlight the Left critique of this historical practice that occupies such an integral part of the amerikkan imaginary landscape. As many queer theorists and activists rightly argue, “equality” and liberation are not identical concepts (although they may overlap). That “equality” has become virtually a trademark of the mainstream gay rights movement is a testament to how well their conformist, capitalist leaders have coopted a term, turned it into a politically saavy, marketable commodity, and repurposed it to mean a rigid form of formal/legalistic equality before the State. If this what “equality’ means, I want no part in it.

As a queer person of color, I simply don’t relate at all to the movement for marriage equality. Listening to and observing people’s reactions that confirm their deep-seated longings and acceptance for marriage, I can’t help but feel ever-more marginalized as the expansive scope of mainstream neoliberalism accepts more of this post-modern petty-bourgeoisie into its yoke. As dominant society accepts more “diversity” (if not the ever-growing legions of poor people) into its strictly-protected borders, I realize that those of us living in the alternative underground will be further invisibilized. Just as post-modernity fractures us within a kaleidoscope of subcultures, hybridities, and identifications, it can also atomize us to the point of colossal despair.

As someone sympathetic to anarcho-communist principles, such as State-less self-governance and the universal democratization of all human relations, I find marriage to be an extremely conservative institution, an oppressive relic of our sexist and colonial Judeo-Christian heritage. I fear that this latest ruling’s expansion of definitional marriage will only perpetuate an oppressive notion that the State has legal authority to sanction (i.e. “bless”) a particular, two-person relationship with exclusive benefits that would not be available to other, variably arranged relationships (e.g. polyamorous relationships, co-habiting non-spousal family members, non-romantic friends). If nothing else, a widespread legalization and proliferation of same-sex marriages would only deepen, and hence further the normalization and acceptability of, its significance in dominant society.

As a single, chronically ill man of color, I also find marriage to be an out-of-reach concept that has no pertinence in my life and would not, in any conceivable circumstance, proffer me any material benefits. It is alienating and disconcerting to see my affluent, white queers embrace this decision with hugs and wine glasses while I struggle through economic insecurity and chronic disease. The celebratory screams of my former classmates and co-workers simply accentuate the ever-present throbbing in my head as well as my disdain for an expansionist pink capitalism. I also need not say more about the rabid heteronormativity and singlism it perpetuates.

Having unleashed all this venom, however, I recognize that there are actually a number of radical leftists who defend the marriage equality movement in some shape or form. And I agree with some of them. There are great, substantive reasons (including some articulated below) to support a movement that can potentially ameliorate the material realities of marginalized individuals, even if it does come in a reformist package. In some of these more critical arguments in defense of legalizing same-sex marriage, the “movement” is defended as a short-term strategy that can uplift people on the road to revolutionary momentum. Although I can’t expound on these arguments, I think the general idea is that legalizing marriage today, within the oppressive western, white imperialist society we’ve inherited, could at least offer much-needed material benefits—such as adopting a partner’s health insurance, saving on expenses and taxes, and possibly gaining legal residency or other state-sanctioned status.  Since I am so disconnected from the very notion of marriage itself (I’ve never had a long-partner), I haven’t devoted much time to extricating the different strands of arguments and can’t make a decision about these arguments with any definitiveness. On the surface, at least, they seem to make sense granted one important condition: that it is done conscientiously, with participants being aware of their complicity in a structure that needs to be radically transformed.

In spite of the negative identity politics associated with marriage equality, I’m hoping, perhaps, that much of those millions of dollars and hours of human energy expended on marriage equality will finally filter into the frontlines of the working poor and add much needed fuel to the fights for humane housing, immigrants’ rights, labor justice, and health care equity. Perhaps.

Here are some articles and cases that DO reflect a good, immediate-term usage of marriage equality:

Colorlines: What DOMA Ruling Means for LGBT Families of Color

Colorlines: DOMA Ruling Clears Path for Binational Couples

Politico: DOMA ruling stops deportation hearing at last minute

Left* arguments around queer liberation and the same-sex marriage movement:

Scot Nakagawa (03.25.13): Why I Support Same-Sex Marriage as a Civil Right, Not as a Strategy to Achieve Structural Change

Tamara K. Nopper (05.19.12): Beyond the Access Narrative: Marriage Politics, Austerity, Surveillance

Kate Bornstein (12.04.09): Open Letter to LGBT Leaders Who Are Pushing Marriage Equality

Mattilda Bernstein Sycamore (11.02.09): Why Gay Marriage IS the End of the World (or the queer world, at least)

Yasmin (07.06.09): Legalize Gay, Or: So You Think You’re Illegal?

Dean Spade & Crag Willse: I Still Think Marriage is the Wrong Goal

 

Hear from Dean Spade, Kenyon Farrow and Mattilda Bernstein Sycamore in Queer Voices: Beyond The Queer Mainstream – Beyond Gay Marriage and the Mainstream Gay Movement:

[audio http://archives.kpfa.org/data/20130630-Sun1100.mp3]
Assimilation Not Liberation!

I seek to be free, not another consumerist cog in the white imperialistic power structure.

When Things Flare Up Again

In Crip Politics / Disability Politics, Identity Politics, Life with Chronic Illness, Multiple Sclerosis on June 8, 2013 at 10:07 PM

As can happen with individuals with chronic pain, I withdrew from much of the world in the past month.

The combination of sun, psychic stress, and bodily weakness kept me home, trapped in a state of hopelessness and confusion.

In anguish, I wondered, What was happening to me? The enigma of my condition was accentuated by the fact that I’ve recently quit my job and therefore had no work-related stress. In fact, I had saved up enough money precisely because I didn’t want to have financial worries. And the spring weather should have been an incentive, not a deterrent, in me spending time outdoors.

It turns out that my MS, always unpredictable, resurfaced in a striking way. I was having another flare-up in spite of all my best efforts to take care of myself.

What shocked me was not the fact that I was having a flare-up (which I’ve learned to accept as inevitable and unpredictable), but the fact that my disciplined dieting, exercise, and meditation were not enough to reverse pernicious autoimmunity.

When I first felt the flow of another dreaded relapse, I began downing as many green shakes (i.e. juices made of leafy green vegetables and fruits high in antioxidants) as possible.

I continued, and accelerated, my daily consumption of anti-inflammatory foods and herbs (e.g. fatty fish, nuts, flax seeds, turmeric, and garlic). I exercised as best as I could in the face of chronic pain. And I read up on, and watched countless films on, food justice and the evils of modern agribusiness and factory farming.

I thought I was doing all the “right” things.

Then things started to quickly deteriorate some more. I found myself getting incredibly weak and easily fatigued, to the point of needing support from my family in such basic things as cooking and doing laundry.

Tingling sensations and vibrations spread throughout my entire body. And on days it rained—which were many, since it was a particularly rainy May in New York City—I was particularly incapable of usual functioning.

So for many days I was sofa-bound, sprawled on beige leather as I shamelessly watched hour after hour of television programming on Netflix. Whenever possible, I watched documentaries as these at least felt like a “productive” use of TV-watching hours that resulted in learning (note the internalized capitalist rhetoric implicit in this thinking). I was even able to read books about yoga and chronic pain while sitting back on a recliner.

Yes, all of these things made me feel like I could be moving in the right direction. When the green ‘juicing’ didn’t work, I decided to try harder.

I tried juice fasting. I eliminated all meats from my diet, and substituted vigorous, moderate-intensity exercise with light yogic asanas and stretching. People can judge me for many things, but no one could deny that I was really trying.

Feet Neuropathy

A pharmaceutical ad for a drug meant to treat chronic neuropathy, or pain resulting from nerve damage.

But even the best attempts to assert control can be met with demise, as if the Universe were scornfully laughing at my mortal hubris for thinking otherwise. It was a Sunday in late May. It began, as usual, with a slow start because the painkilling medications I need to in order to fall asleep also have a tendency to keep me sedated.

And things seemed like they would go their usual “calmly perturbing” route until it started to thunder in the afternoon, at which point I could feel the world distancing itself from me. Every movement started to feel like a Sisyphean feat. The kitchen, and food, may as well have been an ocean away. I couldn’t believe it. I was drowning.

When I started to feel the uncomfortable, paresthetic vibrations along my torso, with accompanying burning pains in my feet, I realized that this wasn’t going to go away through my efforts alone. I asked my father to drive me to the hospital (one that isn’t the closer, shittier hospital by my house).

I already knew what to do. I spent more time educating the nurses and residents than I was accustomed to, but it was all alright as long as they did what I needed them to do.

I got my infusion of Solu-Medrol (an anti-inflammatory steroid that is a typical treatment for an MS flare-up) around midnight, which meant that I would not be sleeping any time soon. But at least the worst was over. Within a few hours I felt as good as new.

One of my realizations these past few weeks has been the reality that we don’t have as much control over our lives as we think we do. Yes, it’s one of those aphorisms you might read in a self-help book somewhere in Barnes & Noble, but it’s undeniable.

We just have an illusion of control mediated by economic stability, reasonably good health, and interconnected systems of social organization (modes of transportation, electricity, commercial venues, etc.). When one of these components fails, however, everything can fall apart like a cascade of tumbling dominoes.

We sometimes acknowledge this in moments of crisis, or in thinking about what would happen if that next paycheck didn’t come through. And sometimes things can rebound (like after a recession, or a new job), or they can be irreversibly changed (like in traumatic injury or death). It’s the latter that we try to ignore, always hoping for a rebound or a glimmer of former regularity.

I also realized that I was beholden to a logic that many with disabling conditions are often swayed by, which is that this all happened because I did something wrong.

Whether it was that I wasn’t eating enough green leafy vegetable, or spending too much time in contaminated environments, or simply “allowing” myself to get so stressed out, the locus of blame was largely (if not explicitly) on myself.

Yes, call it some form of internalized ableism. The fact is, many people (including those well-versed in identity politics and systems of oppression) harbor attitudes that correlate “good” circumstances with “good” behavior, and “bad” circumstances with “bad” behavior. Such correlation is, in many ways, at the root of the meritocratic myth in competitive capitalism, or the age-old dogmas of organized religions.

It is so pervasive in our thinking that the matter-of-factness of it all leads many to think it is simply a matter of causality, not realizing that the qualifications of “good” and “bad” are dictated by societal norms.

 

I didn’t realize the extent of this judgment until I started to examine my thinking. After all, I came to the conclusion that eating “green” was worth my time for a reason.

And though I’ve long believed that structural forces account for a sizeable portion of what accounts for life circumstances, I found myself really wondering why I opted to change my behavior following my last set of relapses (whatever their cause), instead of merely accepting the fact that shit has happened that I could do little about.

And this is not anything unique. Even the educated among us opt for crisis-prevention strategies like buying life insurance, avoiding toxic environments, exercising, and eating organic foods in the belief that these activities will accomplish something that is ultimately beneficial. That they are “good.” If nothing else, in the absence of prophetic information, they all provide a peace of mind.

Their goodness, however, implies that other things are “bad”—an implication that rises to explicit awareness when shit hits the fan in a situation like mine. There is nothing like illness to make you see what is really there.

Of course, my efforts through behavioral modification came about from a desire to regain a control I felt betrayed when my “alien” body was having symptoms. None of this is to say that efforts at self-care are worthless, but to understand the underlying reasoning for them.

In my case, I had hoped that things could improve through careful eating. I still do. But hope does not translate into knowledge, and with MS, it’s hard to foretell much of anything.

Even grappling with the question of whether or not to apply to grad school this year, I’ve learned just how completely at a loss I am when it comes to making a decision that could affect me five to eight years down the line.

I honestly don’t know where I’ll be or what I’ll be physically and mentally able to do. Not a day goes by where I don’t wonder about how I’ll survive the pain, not to mention getting through several years.

This jarring instability has humbled me, but it has also awoken me to my attachments to material objects and life circumstances.

The flare-up didn’t make me realize all this. Meditation did. And what I’ve come to appreciate is just how attached I’ve been to certain ideas of who I am in the world.

Hopes and dreams still dot the landscape of my mind, as they should, but I choose to be as aware of the processes that give rise to them as possible.

Such is the mindful awareness that I strive for.

Kristin Richardson Jordan

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