134. Conclusions: Enna Seyrathu . . .

Racialized medical discrimination?

"The thing about conclusions," Dolphin-Krute (2017) writes, "is that there is no closure" (p. 103).

Every day, there's something else. A white woman nurse practitioner tells me I don't need a cane; strength training will "fix" me. A white woman psychologist groundlessly assumes I'm the victim of honor-based violence because I'm Tamil, queer, disabled, unmarried and unmarriageable. A white man gastroenterologist and white woman gynecologist both say I can improve my gut pain and dysmenorrhea by not overeating (I don't), exercising frequently (I can't), and taking hormonal birth control despite a history of hormone sensitivity (I won't). My mail-in prescription is stolen, and when I call the pharmacy to beg for a refill, I'm careful to sound distressed but enna seyrathu acceptant — not desperate — to avert racialized perceptions of addiction.

On Twitter, I identify with stories about medical racism experienced by Black and darker-skinned Indigenous, Latine, and Asian and Asian American patients — mostly women, trans, or non-binary people. A fat Black disabled woman is called hostile for firmly noting her drug sensitivities and requesting a safe painkiller; instead, she's given a drug that triggers anaphylaxis. A Filipino man with acute back pain is infantilized and dismissed because of his accent until his daughter, fluent in American English, arrives to advocate for him. A South Indian woman drives herself to the hospital when her water breaks, where her doctors tell her she's mistaken urination for amniotic rupture, because pain would have seized her car keys if she was going into labor (Huber, 2017, p. 102). A non-binary, chronically ill Black doctoral student, screaming in pain, is ignored at the same emergency department where I was admitted for my mysterious pelvic pain.

So many people — mostly white, cisgender, and nondisabled — express misbelief. They say: This would never happen. They mean: This has never happened to me.

The U.S. healthcare system is built on colonial legacies of systemic racial discrimination and mistreatment, like the unanesthetized gynecological surgeries performed by J. Marion Sims on enslaved Black women, the Tuskegee syphilis experiment, and the nonconsensual collection and use of Henrietta Lacks' cells in research. Anti-Blackness in American clinics is pregiven. Nearly a third of medical trainees, residents, and physicians surveyed in 2016 believe at least one racist, colonialist myth used to justify slavery: for instance, that Black people have thicker skin, fewer and less sensitive nerve endings, and lower lung capacity than white people (Villarosa, 2019; Abruzzo, 2011). These stereotypes are easily imposed onto "savages" (like Indigenous peoples) and dark-skinned people from "dark continents" (like South Asia), as though the darker the skin, the stronger the immunity to pain, and the stronger the linkage between social, spiritual ills and infirmity (Bourke, 2014; Nair, 2017).

Asian Americans are subject to a different kind of medical discrimination. We're underrepresented in U.S. clinical trials, viewed as perpetual foreigners, and judged on the basis of age, accent, citizenship or length of residency, occupation, and darkness of skin color (Aroke et al., 2019; Misra & Hunte, 2016). South Asian Americans, who tend to have relatively high levels of education and income, aren't perceived as vulnerable to implicit ethnic bias in U.S. healthcare. Historically, "civilizing" education was correlated with a lower pain tolerance, so the model minority Tamil or Tamil American upsets the colonialist myth equating dark skin with imperviousness to pain, but U.S. society and healthcare operate under the persistent notion that respectability is a thin veneer on dark-skinned bodies. It's a matter of time before we revert to our "primitive" states. The angry Black woman. The superstitious, hypochondriac, querulous South Asian woman. Cultural resilience, like the kind cultivated by Eelam Tamils, might desensitize South Asians and South Asian Americans to the effects of discrimination by healthcare providers, but bias and scientific racism reduce their healthcare utilization in the first place (Misra & Hunte, 2016).

Enna seyrathu, but if it's true that experiencing racial discrimination can alter the body physiologically and psychologically, then seeking medical care over the years has done me a great deal of harm (Aroke et al., 2019).

The peyththai wandering in the whitestream?

If I've become a ghostbody, it means something that I didn't grow up believing in white ghosts, but when I imagine a crip commons around non-apparent chronic pain, my first thought is still white women.

The books about chronic illness that are frequently recommended to me are written by white or white-passing women — Bourke (2014), Huber (2017), Berkowitz (2015), Miserandino (2010), Levy (2003). The chronic pain ethnographies and autoethnographies I was advised to incorporate in this dissertation are also mostly authored by white or white-passing women — Scarry (1983), Charmaz (2002), Segal (2005), Greenhalgh (2001), Barker (2005), Kafer (2013), Selznick (2017). In short, white women appear to monopolize the record of chronic pain.

It matters who controls the mainstream narrative. My Twitter timeline is dominated by disabled Black and brown voices, their stories written with the urgency of those who know that public self-documentation is a necessary countermeasure against medical mistreatment, though it endangers future care.

I'm always apprehensive about linking myself to the common, because the common risks overwhelming singularities and asymmetries, and if the mainstream crip commons is white women, I — and my stories and experiences — cease to belong.

Disabled Black and brown folks' need for space and solidarity?

This dissertation, and the experience of chronic painervation itself, constantly asks: what is the auto in autoethnography? How much is singular? How much is common? What kind of common do I really desire?

To say I am a self is to already say I am collectives, affinities that flesh out the auto. Chronic illness. Dark skin. Neuroqueerness. Intergenerational trauma. Mythological devas and rakshasas. My past is checkered with communities that I have refused to affiliate with or purposefully exited because white supremacy, biphobia, and/or ethnic chauvinism meant they weren't spaces that wanted me. Like lesbian-only spaces, or South Asian cliques, which can be colorist and judgmental about language proficiency, political alignment, and cultural knowledge. Black and brown disabled activists note that disability justice efforts are often hindered by the implicit bias of white disabled people. I linger at the outskirts of online disability communities that excuse their internal racism, ignoring the perspectives of and calls for accountability made by disabled Black, Indigenous, South Asian, and Southeast Asian individuals.

How does one write, let alone conclude, an autoethnographic dissertation generalizable enough to satisfy degree requirements while also acknowledging that the more commoning the project, the more a bodymind like mine risks erasure, the more likely it is that ethnically specific experiences, needs, and aims will be abstracted and overwritten with the racially neutral?

So this project is for nondisabled and disabled individuals, people of color and white individuals, patients and clinicians, but it is primarily for Tamils and Tamil Americans — Eelam Tamils in particular — and it doesn't pretend that solidarity hinges on one central commoning goal. The singularities and asymmetries ironed out within the common aren't negligible, but our desires and demands overlap with other BIPOC Americans: for instance, rampant anti-Blackness in U.S. healthcare and medical research has led to calls for antiracist reframing of doctor-patient interactions and diagnostic procedures, coercive clinical practices, "noncompliant" assignations, and institutional policies (Villarosa, 2019). Disability justice benefits all of us.¹

This dissertation isn't advocacy work, but I hope it opens avenues for solidarity through ambient affiliation and commoning pathways, as contingent and variable as they are. Its digital affordances let you glimpse the auto in other ways: presenting other affinities that share its present and future, tilling the soil for new affinities I can't yet predict. I hope it reinforces for those who share affinities with me, now or in the future, that they are not alone in their misabled experiences, struggles, suffering, and joy.

I hope this project has an evolving imagination.
This project hopes to evolve with you.

The exhaustion of being paavam?

This dissertation took me eight years of reading, thinking, writing, medical crisis and banality. Eylaathu. I've got nothing left. But depletion doesn't curtail the exhaustion of having to be paavam enough for accommodation and care. My experiences of racist-ableist microaggressions are exponentially higher than my experiences of social, academic, and medical compassion, though I luckily found care in multiple spaces at critical times. In Dr. Birnbaum. Dr. Sattva. Jack, who — unlike so many Ph.D. advisors — accommodated my chronic illness and didn't suggest my cognitive and sensory dysfunction disqualified me from academic pursuits. Susan, and some trusted members of my cohort, who drove me to my destinations when my uyirmey was in crisis. My cardiologist, who says, "This sounds enough like POTS to go on your medical chart — an official label helps everyone else believe." Anji, Mary, and Sara, whom I rely on for emotional support and mutual aid. Dr. Kyrios, whose response when she hears about my appendectomy is: "I'm not surprised you almost died. Some doctors view you one way and don't want to see anything else."

I didn't have to engage in disability masquerade with these people, but there's always something. At the beginning of 2020, my interim rheumatologist leaves her practice without warning and without informing me, leaving me without a prescribing physician for eight tense months. My Lyrica refills have dwindled to zero by the time I secure a telemedicine appointment with Dr. Zagara. I wear myself out readying my paavam patient narrative before I realize I don't have to, when she says, "I have your chart in front of me, of course, but I want to hear your medical history in your own words."

This is the exception, not the rule.

I say to her in our first consultation, "I've been living with fibromyalgia for 14 years; you could say I'm pragmatic about prognosis," and by way of agreement, she replies, "Right, there's no cure, but there are things we can do."

She refers me to the cardiologist who diagnoses me, officially, with POTS.
She refers me to the physician who diagnoses me, officially, with ME, through a combination of subjective patient data and a lab workup indicating latent viral reactivation and humoral immunodeficiency.
When I have a melena scare, one of Sara's clients, a Crohn's patient, recommends a gastroenterologist who promptly orders an endoscopic exploration and biopsy.
All of these physicians are on the "good NYC doctors" lists kept by disabled people in the New York metropolitan area, because they are known for listening to and caring about their chronically ill patients, the ones with wastebasket diagnoses deemed expendable by everyone else.

These days, it's impossible to be disabled and brown and not feel expendable. That American society would like us to die has been an open secret, but since the COVID-19 pandemic, everyone's started saying the quiet part out loud.

Bioculturalizing and decolonizing misability and painervation?

What is the futurity of chronically painervated bodyminds like mine — queer Tamil American women tied to colonial histories and personal and intergenerational traumas?

If the organizing principle of Euro-Western biomedicine in U.S. healthcare is whiteness, maleness, and the capacity expected of people who have never lived with contingency, then this dissertation responds with nohuthu, metis, eylaathu, chaos and uncertainty.

Through autoethnography, fictocriticism, discourse analysis, and approaches in media studies, cultural studies, and rhetoric, it explores pain from a biocultural, decolonial perspective.
It describes the violence of the logic of cure and of the goal of rendering the (Eelam Tamil) body fully biomedically transparent and perfectible.
It conceptualizes academic work as a game of shifting investments and performances that perpetrates symbolic violence on all its members, especially chronically ill graduate students.
It offers misability as a brain-fog word blend, a self-definitional concept that is modifiable and generalizable and encompasses fascial thanthiram; a reorganized, relational assembly of the senses; and (Tamil woman) fibromyalgic ways of being, knowing, and doing.
It presents, as a form of social analysis and pedagogy, the parables and stories of my Tamil American childhood, of past microaggressions, of memorable kindnesses.
I have unfolded my uyirmey so that nondisabled readers might interrogate their relationship to and practices around bodyminds like mine and so that disabled readers, particularly the non-apparently chronically painervated, might perceive and contextualize their conditions in theoretically and practically advantageous ways.

At the end of all this exploring, I still don't know.

Decolonized bodyminds' resistance, resilience, and self-determination?

The chronically ill body hopes to be better, not get better, as there is no return to pre-illness normalcy (Dolphin-Krute, 2017, p. 72). What it comes up against, still, still, is the reductive Euro-Western biomedical model of pain, is the legacy of colonialism in medicine and the academy, is the refusal to believe that the fibromyalgic patient-scholar understands her bodymind well enough to say that chronic pain and fatigue have rewired her sensorium and interoception and that, though her pain signifies nothing, it swells with significance.

In a world oriented towards ocularcentrism and normalcy, I check off all the wrong boxes: nonwhite, queer, non-reproductive, non-apparently chronically ill. I look well even while dying. In the colonialist, ableist framing that organizes our inaccessible world, I am the murderer in our game of murder in the dark, expected to lie even with the noose around my neck.

"Of course," Dr. Zagara says, when I finish recounting my medical history. "Because to be a foreign-looking woman in pain is to invite doubt."

An ending?: The endless kala of chronic vali.

Everyone wants an ending, but chronic pain has no ending.

This dissertation is littered with transient conclusions, mirroring the destructive plasticity of chronic pain, the bodymind that incubates crises and lines of flight, and cyclical, eternal, formless kāla time. Karna's stoicism concludes with fatal brain fog. The war in Sri Lanka concludes with genocide. My nondisabled futurity concludes with my diagnoses, comorbidities, increased risks. Each padalam and kandam, able to stand alone, possesses its own conclusions and interminably progresses towards an ending, a deadline, that never seems to come.

I want these emulations of pain to spur nondisabled people into thinking about their implicit biases, about what they take for granted about their healthcare and environments, about what they would need in a predicament like mine, how their axes of privilege would help or hinder their attempts to obtain diagnosis, care, or accommodation.

I am neither the first nor the last to proclaim that chronic pain reconfigures neural pathways, de- and re-sensitizes the flesh, shatters executive function, attention, and recall, and cannot be disentangled from cognition and fatigue. So:

If you arrived here bored: good.
If you were aroused to hypervigilance: good.
If you were irritated or frustrated: good.
If you were excited and overstimulated: good.
If you feel you wasted your time: good.
If you love or hate me for it: good.

Because this is how it is for me and others like me, in the clinic, the academy, the social spaces that are discriminatory even when they claim to be welcoming, the environments I can't access. I am not cured. I do not get to die. I can't go on and I must. Nothing is resolved. There is no solution (Wang, 2019, p. 147).

There is no narrative arc for this but fragmentation, volatility, and multiplicity (Dolphin-Krute, 2015, 2017).

Like chronic pain itself, a waiting unto death for a series of emergent truths that manifest in, with, and through the flesh, this dissertation is a counterstory, a counter-diagnosis, an embodied movement that shows that "resistance to oppression is not only possible but rooted in long, untold histories" (Cedillo, 2018, para. 9); it asks you to repeatedly dive back into the wreck until, without warning, illumination strikes.

By even briefly reordering the world through this text, attempting to reorder the cognitive, sensory, and social worlds you inhabit, I have tried to illustrate that life with pain is more than just livable, and disabled futurity can simultaneously be a politics of decline and death and a dynamic, joyful, and desirable existence (Stewart, 2007; Kafer, 2013; Sheppard, 2020).