Access copy of my script for my opening remarks in "When Restoration, Healing, and Harm Overlap—and When They Don’t. Stories from Scholar/Activists in Disability, Indigenous, Feminist of Color, and Trans Rhetorics.” Monday, October 2nd at 2:00pm (Concurrent Session H) . Click Here for the Word doc version.
In 2020, I move to Texas. I bring my medical records to my new endocrinologist—compiled through months of phone calls, voicemails, and faxes. He pages through the unanswered questions of my CT scans, MRIs, and bloodwork. There are no biomarkers for the years I have lost in waiting rooms and on exam tables. There's no record of the doctors who refused to see me after I said I was transgender; the several who complained that they "had no experience with" trans patients; and another who insisted that "Asians don't really get ME/CFS”—also known as myalgic encephalomyelitis, or ME.
If he read carefully, the Endocrinologist might notice my consecutive ER visits after most of the gastroenterologists my former town refused to see me. He might count the many hours between my ER intake and CT scan—during which the hospital social worker found me, forgotten, in the exam room. If care were derived from conversation rather than diagnostic formulas, he might notice that my symptoms flare with exercise or intense emotional distress, a cardinal sign of ME.
This disease turns my body into a barometer for stress. If I overexert—whether physically or emotionally—inflammation storms my body. It wreaks havoc on my nerves, digestion, and immune and cognitive function. The writer in me would enjoy the obvious metaphor—the body translating social antipathy into physical damage—if the metaphor were not also a thing I had to survive.[1]
At the end of our appointment, during which the Endocrinologist decides he can’t or won’t help me, he offers his parting wisdom, "The good news is, whatever this is won't kill you. If it was going to, you'd already be dead."
Much of my recent writing has explored the stories that channel disease and injury toward certain bodyminds. The doctor’s claim that ME is rare among Asian Americans is reflected by actual health care guidelines, even though no studies have focused on Asian/Americans with ME—and certainly none have examined ME in the context of a "model minority myth" that leaves Asian/American health inequities largely unaddressed.[2] From 1992 to 2018, 0.2% of NIH research expenditures went to studies that included A/PIs, and only 10.8% of those awards (i.e., 0.005% of NIH expenditures) went to studies centering A/PIs.
Of the already scarce research into trans health, the overwhelming majority is on mental health and HIV/AIDS. An egregious number of studies ask, “Does gender-affirming care improve mental health among trans people?” (Aka should we believe trans people when they tell us what they need?). A 2020 meta-analysis found that only 7% of studies on trans health investigated general health.[3]
This is the work of story. The “model minority” myth—the fiction that all Asian Americans have bootstrapped their way into success and happiness—has such suasive power that even when studies find that Asian Americans experience worse outcomes than their white counterparts, researchers still manage to conclude that we are the exceptional minority with no elevated health risks.
The medical model has so effectively overtaken mainstream conceptions of trans people physicians and researchers often misattribute a baffling array of symptoms to hormone therapy, gender dysphoria, or gender-affirming surgery. A phenomenon we derisively call “trans broken arm syndrome.”
When the doctor declared the good news that I wasn’t already dead, he was also repeated the extremely limited vocabulary he had for what worthwhile pain looks like on my body—that, in fact, as trans people are told too often directly and indirectly, we are only persuasive when we are dead.
But I’m going to pivot here with the little time that I have to return to chronicity—to what happens when we effectively obscure suffering, when we allow it to smolder in bodyminds because it will not “kill us”—at least, not quickly.
When a body works as expected, injury triggers an immune response. The swelling and heat around a fresh wound are caused by blood rushing to the area, carrying immune cells that destroy pathogens. When injury is chronic, the body's defense system turns against itself. It attacks healthy tissue, which summons more inflammation, which creates more damage. In other words, with enough consistent damage, the body stops being able to distinguish between genuine threat and the very resources it needs to heal.
I can put this more concretely. When I’m in the depths of a crash, everything hurts—sunlight, the doorbell, my dogs barking, my partner asking the question I cannot summon the energy to answer. A partial explanation for this phenomenon in ME is that our neurotransmitter pathways have been disrupted so that we struggle to filter stimuli. I’m also neurodivergent and already very familiar with the struggle to wrangle my attention so that I am not just an open vessel for other people’s anguish.
I’ve been thinking about how it feels impossible in these moments for me to identify the actual source of harm. The doorbell rings, the dogs lose their minds, and I am… volcanic with fury. Objectively, I know better than to blame my dogs for barking, but when every sound fills my head with shrapnel, I am just combustion and scorched earth.
And the thing is—before I had the words for it. Before I, with my university library account, found all the medical theories about the mechanisms behind ME, I had astonishingly little grasp of what was happening. I just knew I was hurting. I am ashamed at how many times I have snapped reflexively at a loved one because it felt like they were the thing that was hurting me.
Let me zoom out.
We’re in a political moment when—for many of us—it feels like everything is on fire. One of the very clear rightwing tactics is to set everything on fire so that we’re scrambling to address the hundreds of anti-trans health care bills, the anti-CRT bills, the increasingly narrow access to abortion, the dismantling of university-DEI structures… I think of rhetoric as technology of attention. Every story we tell is a selection of some events over others, a particular arrangement of happenings into cause and effect. If rhetoric is our means of choreographing attention—then what possibilities does it offer to focus our actions, to cordon off the distractions, to see the many different forms of pain that are not spectacle but that wear us down (to reference Dr. Carey’s discussion yesterday on fatigue).
It is my hope that we can devise rhetorics that enable us to see how our own trauma responses can compound damage for ourselves and for others; how often what we think is healing actually burns us out or stokes the fire; how we might better recognize the commonplace suffering we have come to accept as normal, and the fact that most of us are not getting out of here without better learning how to recognize and show up for one another.
[1] See Daniel Brouwer on diagnosing illness to spotlight system breakdowns. Daniel C. Brouwer, “Illness as Metaphor in Cassils’s Trans Performance,” QED: A Journal in GLBTQ Worldmaking 6, no. 1 (February 1, 2019): 100–105, https://doi.org/10.14321/qed.6.1.0100.
[2] Stephen J. Gluckman, “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome,” UpToDate, March 2023, https://www.uptodate.com/contents/myalgic-encephalomyelitis-chronic-fatigue-syndrome-beyond-the-basics/print; Leonard A. Jason et al., “The Prevalence of Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in a Community-Based Sample,” Child & Youth Care Forum 49, no. 4 (August 2020): 563–79, https://doi.org/10.1007/s10566-019-09543-3; Stella S. Yi et al., “With No Data, There’s No Equity: Addressing the Lack of Data on COVID-19 for Asian American Communities,” eClinicalMedicine 41 (November 2021): 101165, https://doi.org/10.1016/j.eclinm.2021.101165; Jacqueline H. J. Kim, Qian Lu, and Annette L. Stanton, “Overcoming Constraints of the Model Minority Stereotype to Advance Asian American Health.,” American Psychologist 76, no. 4 (May 2021): 611–26, https://doi.org/10.1037/amp0000799.
[3] Sari L Reisner et al., “Global Health Burden and Needs of Transgender Populations: A Review,” The Lancet 388, no. 10042 (July 2016): 412–36, https://doi.org/10.1016/S0140-6736(16)00684-X.