Trans Care within and against the Medical-Industrial Complex

Denials of Care

The nexus of care most commonly associated with transness—that provided by the medical-industrial complex—has often offered not much more than cold comfort to those trans subjects seeking it. Economically inaccessible, geographically dispersed, and rigorously gatekept, access to those gender-confirming surgical procedures offered by physicians have been, for quite a long time, an indicator of relative privilege, most commonly open to White, well-educated subjects of considerable economic means. While the hard-fought and ongoing battles that have resulted in recent expansions in transition-related insurance coverage and (imperfectly) democratized access to hormones have shifted this terrain considerably, the legacy of gatekeeping persists into the present, as does the high out-of-pocket cost of surgery for those subjects not enrolled in an inclusive insurance program, who don’t have insurance, or who utilize Medicaid and live in a state whose Medicaid policies contain specific trans exclusions.

The fact that the subjects that populate trans archives are implicated in our ongoing survival is made abundantly clear by the traces of medical contestation they’ve left. The battle to end medical gatekeeping began a long time ago, and the (still inadequate) representation that trans subjects have gained in the areas of trans healthcare and medical policy are both recent and hard won. The model of medical patriarchal benevolence that tracks from the era of Harry Benjamin forward has proven particularly recalcitrant—and trans folks have proven particularly ready to do battle with it.

In spring of 2018, I visited the Kinsey archives at Indiana University to look, specifically, at the materials associated with the Harry Benjamin International Gender Dysphoria Association (HBIGDA) and its later transformation into the World Professional Association for Transgender Health, the still-extant organization that has authored the official, widespread Standards of Care meant to guide medical providers in their providence of trans-related services. I wanted to understand, in greater depth, how it was that HBIGDA transformed into WPATH and became the transnational standard-setting organization that it is today.

It turns out that, in the 1990s, HBIGDA was struggling considerably to cohere and operate, in large part because certain well-known members of trans activist communities began to publish critiques of the extant Standards of Care, honing in specifically on the problems that attended the so-called real life experience (or “real life test”) that mandated that trans subjects live in their “preferred gender role” for an extended period of time (ranging from three months to a year) before they are able to access hormone replacement therapy and gender-confirming surgery. A paradigmatic example of this argument comes from a contributor named “Cheryl B.,” who wrote in to TV/TS Tapestry (which would later become Transgender Tapestry) in 1994 in order to point to the danger of the real life test for trans women in public, single-sex spaces, pragmatically pointing out:

During the real life test, a risk lies in the use of public restrooms. While some pre-ops may well as women, others may have some difficulty. The police may arrest the pre-op on the complaint of another patron. If the arrest occurs after 5pm on a Friday, she may be detained over the weekend in a men’s jail. Like Dee Farmer, the offending TS may be exposed to unwanted rape and infection with HIV.

The danger only exists during the real life test dictated by the tyranny of HBIGDA. Although I have repeatedly argued this point with my therapist and with other experts, the dictate remains in force. (Cheryl B. 1994, 18)

This argument should be, at this point, deeply familiar, because a variation of it has had to be routinely remade in response to mechanisms of medical gatekeeping as well as the sustained effort to prevent trans people from accessing single-sex spaces, witnessed most recently in the spate of so-called bathroom bills that seek to mandate that the sex marked on one’s birth certificate is the determinant for which single-sex spaces they may access. The logic of it runs as follows: institutionalized transphobia and medical gatekeeping entwine to produce a necropolitical cascade of effects that threaten the lives of trans people, and trans women of color most intensely. The rhetorical force of Cheryl B.’s argument derives not only from her own experience but from her reference to Dee Farmer, a Black trans woman who was repeatedly raped and contracted HIV while imprisoned at the federal penitentiary in Terre Haute, Indiana. Farmer’s case against prison officials—Farmer v. Brennan—hinged on her assertion that prison officials knew that she would be especially vulnerable to sexual violence; it went to the Supreme Court, who ruled—in their historic first direct address of rape in prisons—that prison officials who fail to make provisions for prisoner safety in such instances can be held responsible for the ensuing violence. They argued that it constitutes a violation of the Eighth Amendment (the one that prohibits cruel and unusual punishment). This ruling was not necessarily a victory for Farmer or for imprisoned trans people. There was no direct commentary on trans experience—Farmer was repeatedly and consistently misgendered by the court, treated and referred to as male throughout, and in much of the mainstream reporting on the case.

While the claim that this possibility for violence “only exists during the real life test dictated by the tyranny of HBIGDA” is overdetermined—certainly, trans women face violence both before and after accessing transition-related medical services—it does drive home the point that medical gatekeeping intensifies risk and compromises safety. This emergent critique of the Standards of Care would ultimately convulse the organization, resulting in the short-term in the composition of a trans-led Advocacy and Liaison Committee that was consulted during each subsequent revision to the Standards of Care and in the long-term produced a standing ethics committee in WPATH (led, as of 2020, by trans activist and author Jamison Green). Importantly, the formation of these committees marks the first time in the history of trans medicine where trans folks were officially and actively consulted regarding the treatment they received. It’s a landmark moment for trans patient advocacy and a crucial moment in the genesis of the push for depathologization.

Engaging in such struggle can come at a high cost. It’s worth mentioning that when I encountered this letter to the editor in the archive, it was in the HBIGDA files because it had been photocopied and sent to Eli Coleman, the University of Minnesota–based sexologist who was the founding editor of the International Journal of Transgenderism and who, a few short years later in 1999, would become president of HBIGDA. The note scrawled in the top left-hand corner of the Xerox reads, “Eli—is she one of your pts [patients]” (HBIGDA, box 1, series 1, folder 1). The location tag beneath her name is “MN”—Minnesota. I presume that this Xerox was sent to Coleman by another medical specialist affiliated with HBIGDA, and it testifies to the smallness of trans worlds. It is a situation wherein medical professionals are actively reading the small handful of trans community publications and able to single out particular patients—those engaging in public critique and protest of medical gatekeeping—with ease. So much for anonymity and privacy. It also raises a red flag concerning the possibility of retaliation. What if a medical practitioner, displeased with such contestations, decided to actively withhold treatment? Discontinue their relationship with the patient? Given the paucity and geographic dispersal of providers, such a rejection might very well be tantamount to a full-on denial of transition.

This isn’t far-fetched speculation. Such forms of retaliation indeed happen. Recurrently.

Denial can take many forms. One of the most heartbreaking and infuriating aspects of wading through trans medical archives has to do with the consistent appearance of letters from trans folks seeking treatment with limited funds, asking for long-distance diagnosis, or if sources of financial support for transition exist. One woman writes to Alice Webb, who ran a gender-affirming practice in Galveston, Texas, in the late 1980s, inquiring as to whether or not she can get “help at a low cost . . . via mail” (HBIGDA, box 2, series 4 B, folder 2) because she doesn’t have money, time, or the ability to travel elsewhere for a consultation. This is but one example; such inquiries appear so often in Alice Webb’s archives that she begins to use a form letter by way of response, one that states that no financial support exists and offers—if possible—information about local or regional trans support groups that the inquirer might attend. When a refusal of care is the best you can hope for, what do you do? Where do you turn?

Increasingly, we’ve turned to each other.

Crowdsourcing Empathy, Building Solidarity

Each day, my social media feed is populated with crowdfunding requests for surgery. Often, it’s for facial feminization surgery, which is nearly unilaterally denied coverage. Other times, it’s a request for top surgery, from uninsured and underinsured trans masc folks.

Each day, my social media feed is populated with requests for rent money, for money to keep the power on, for funds to repair a car, or to fund some other necessary expense that ensures minimal forms of survival.

Sometimes, I can throw money at these requests. Sometimes, the most I can do is commiserate in frustrated empathy. Both of these responses are trans care praxis. We turn to social media for support that is simultaneously fiscal and affective, simultaneously practical (for advice about physicians, knowledge about underresearched side effects of exogenous hormones, about what clinics operate on an informed consent model, to seek legal advice) and ephemerally affirmative (to be told that we look hot, to bitch about quotidian transphobia). We hear so much about the purported echo chamber of social media, the way it has increasingly dissuaded political conversation across difference, the way it has contributed to intensified and polarized partisanship. This ostensible dilemma of the demos is structured by the assumption of a specifically dialectic ideal: that continual cultivation of political agonism leads to deliberation, compromise, and ultimately (at least provisional) consensus. Thus, the echo chamber effect makes nonpartisan consensus impossible, or, more hopefully, quite unlikely.

But what happens when your identity becomes a political wedge issue? From debates about “bathroom bills” to Republican outrage about trans-inclusive insurance coverage to continual fearmongering about the specter of trans women in sport, to continual conservative-led legal initiatives to reinterpret Titles VII and IX as trans-exclusionary, trans bodies and lives have been scapegoated again and again as a sign of the excess and irreality of the political Left. Then there are the debates about trans-exclusionary radical feminism currently convulsing the feminist Left and leading to forms of unlikely alliance between certain sectors of radical feminism and the religious right that we haven’t seen since the height of the Sex Wars. In this cultural climate, the echo chamber afforded by social media might be better understood as a provisionary form of trans separatism that offers imperative reprieve. It’s where we access forms of preservative love withheld in the popular domain, and too often scarce in our everyday interactions.

Sara Ruddick, in Maternal Thinking (1989)—a groundbreaking work in feminist care ethics—frames preservative love as one of the central acts of mothering, which is the relational position from which she derives an entire epistemology of care. It’s important to note, as well, that Ruddick understands “mothering” to be a practice taken up by persons of any gender; rather, anyone who commits themselves “to responding to children’s demands, and makes the work of response a considerable part of her or his life, is a mother” (xii). Preservative love is shorthand for all of those acts that keep a being alive and intact, and it is characterized by a specific response to the vulnerability of an other. It means “to see vulnerability and to respond to it with care rather than abuse, indifference, or flight” (19). It doesn’t require a particular affective orientation—we don’t have to be cheerful or enthusiastic about it, and we may indeed feel deeply ambivalent about such forms of care. Ruddick: “what we are pleased to call ‘mother-love’ is intermixed with hate, sorrow, impatience, resentment, and despair” (64).

Of course, only some trans folks are children, and not all trans people engage in mothering. But if you’re a person of trans experience and involved in trans communities, you know that intensified forms of vulnerability and exposure to violence and debility continue to inform trans lives across age groups. In addition to this, transition also scrambles normative temporalities of development. We have “second puberties” well into adulthood; we have “big brothers” or “big sisters” mentor us through transition because, though they may be younger in years, they’ve initiated transition long before us. We sometimes come from childhood homes that did not adequately provide the forms of preservative love and nurturance that form the crux practices of mothering. Alternately, we may have these forms of motherhood reduced or withheld upon the revelation of our transness. This is all to say we remain in need of mothering (in the many-gendered, expansive sense of the word) well into adulthood.

Trans historian Morgan M Page has given us a golden rule as we navigate the spaces of social media, and it is deeply informed by the ethos of preservative love. The rule is simple.

“I do not shit-talk other trans people in public. If I truly have a problem that must be addressed, I speak to them directly” (Page 2020). She goes on to unpack what motivates the rule: the high incidence of mental health struggle in trans communities means that call-outs and online harassment sometimes translate to self-harm and suicide. In addition to this, the rising tide of antitrans organizing has made a practice of solidarity across difference increasingly crucial. We can ill afford to be locked in self-aggrandizing battle with one another. This is doubly so when we consider that the online spaces wherein we congregate—from the Yahoo groups and chatrooms of yore to the networks we inhabit on Twitter, Instagram, and all of the closed groups on Facebook that effectively operate as both support groups and skillshares—are the only trans-majority spaces to which many of us have access.

These spaces, despite their potential, often reify the forms of stratification and inequality that shape our experiences IRL. Public health researchers Chris Barcelos and Stephanie Budge, in their recent work on inequities that manifest in the context of crowdfunding transition-related medical costs, point this out quite explicitly. While noting that crowdfunding medical care is a “response to health and social inequalities related to a disproportionate burden of ill health and lack of adequate insurance coverage for gender-affirming care” (2019, 84), and that very few trans crowdfunding projects meet—or come close to—their goal, it is nevertheless the case that “the majority of recipients were young, White, binary-identified transgender men” (84) and that relative success with crowdfunding is “related to having a large network of distant ties through which the fundraising page is shared” (86). The better networked you are, the more social media capital you have, the more successful your bid for funding will be. This means that crowdfunding favors folks with the time, the extroverted capacity for engagement, and an extant and well-received “brand.” In other words, it makes health care access in the context of compounded inequalities tantamount to a popularity contest. As such, it is an intensifier of already-existing forms of biomedical stratification.

The work of Barcelos and Budge insinuates a broader point: that trans care can all too easily reproduce hierarchies of attention, aid, and deservingness and that such hierarchies exacerbate and amplify inequities. Any care praxis worth enacting must be attentive to such tendencies to reproduce injustice. This applies to forms of emotional support as much as it does to forms of financial support. Our energetic investments are subject to partage and apportioning, informed by economies of existential valuation that we must struggle to be conscious of—and to undo. We are all subject to forms of structurally produced and enhanced ignorance and elision, and these forms of unknowing and inattention are exacerbated, as Safiya Umoja Noble points out, by the algorithms that inform how and what we encounter in digital spaces. As she writes, “racism and sexism are part of the architecture and language of technology,” from Google searches to crowdfunding initiatives (2018, 9). This is why Barcelos, in another article on the inequities of trans medical crowdfunding, calls for a “revolutionary ethic” that would transform the way this practice operates (2019, 7). Building on the concept of “revolutionary etiquette” developed by activist and performance artist Annie Danger (Danger and Nipon 2014), he suggests that such an ethic would call attention to the necessity of crowdfunding as a flawed work-around for the unjust neoliberal distribution of health and wellness services. He writes that “employing this etiquette would mean foregrounding a discussion not only of the healthcare inequalities facing individual trans people, but also an action plan that centers redistribution of financial and social benefits. This etiquette would prioritize a decentering of individual, normative transition narratives in favor of a collective vision of transgender liberation” (Barcelos 2019, 7).

There must be a dual movement wherein we highlight the imperfection and complicity that characterizes contemporary forms of trans care praxis as we push for collective redistribution. We need to address what constrains care, what marks certain bodies and subjectivities as (un)deserving of it, and call attention to the epistemologies, systems, and technologies that contribute to such unjust apportioning, even as we must navigate them in order to get (some of) our needs met. Care praxis is always within and beyond; forever prefigurative.

Coda

To end, a story: when I was a kid, in the abandoned space of my childhood (which is a story for another time), I met another kid, similarly abandoned, and we lashed ourselves together in order to weather the sometimes devastatingly bad storms of our youth. We were both becoming genders we were never supposed to be, and we found home together. We built these homes, first, in each other. We added rooms through our zine trades and our late-night instant messaging and our lousy bands and our parking lot hangs outside of dyke bars and punk clubs. We found a broader network of folks who were similarly trans and queer and broke and traumatized and disassociated and trying desperately to find one another. We encountered the concept of prefigurative politics—building the new world in the shell of the old—pretty organically, through the anarcho-queer imaginary that animated the margins of punk scenes during those years. We came to realize that we were doing prefigurative political work whenever we made space for each other within our psyches, within our homes, within those spaces that felt like way less than homes, and within all those institutions and collectives through which we circulated—some durable, some ephemeral. We both became “voluntary gender workers,” in addition to all the other hats we learned to wear, doing trans, intersex, nonbinary, and gender nonconforming advocacy work wherever we happened to find ourselves. We raised each other in the vacuum of care left by the overlapping economies of abandonment (Povinelli 2011) that shaped our days. We kept each other alive. We mothered each other through it, even though we’d both wind up way more daddy than mother. Our webs have spun out from the juncture of that decades-long intimacy, which is not a center so much as one significant t4t nexus in a constellation of so many, some thicker and tougher than others. The pattern of care and witness that we provided for one another is indelible, and I’m beyond lucky to have cocultivated it at such a young age; it has made it that much easier to identify and reject connections that fail to be characterized by this kind of commitment to making space for one another’s becoming. When I think of care, I think first of him, and this, and the way it raised the bar for every significant encounter and intimacy to come. This is about a certain kind of faithfulness and a certain kind of obligation: about what we owe each other. Minimally, it is this: a commitment to showing up for all of those folks engaged in the necessary and integral care work that supports trans lives, however proximal or distant, in the ways that we can. This, along with an acknowledgment that it is precisely the recurrent, habitual, and mundane practice of showing up that makes us less and less willing to inhabit a world where we don’t show up, and where whole systems fail to show up for us.