Introduction

I was meeting Tanya for the first time. A Black trans woman and activist in her 50s, she had been introduced to me by another activist. Soon after, she had invited me to her home in West Philadelphia to interview her as part of an ongoing nationwide study of the HIV epidemic that sought to take trans women’s perspectives into account. The study is technically known as the formative assessment phase of the trans women cycle of the National HIV Behavioral Surveillance (NHBS), funded by the US Centers for Disease Control and Prevention (CDC) and administered by local health departments across the US. [1] At the time, I was primarily conducting ethnographic research with children and adolescents engaged in gender-affirming care, and I was hired to work with the study’s Philadelphia-based researchers as an ethnographer. Tanya was one of the trans women who volunteered to share their experiences with me, and it was in this context that she would critique HIV prevention research and trouble the optimistic logic of health disparities scholarship.

As we sat in her living room, I began our conversation by thanking Tanya for graciously sharing her experiences with me. I explained that although I would ask questions from the interview guide I had developed, I was more interested in the information that Tanya herself felt was important for me to know. Tanya talked first about her experiences as a long-time activist in Philadelphia, where she organised support groups and mutual aid for trans people. I asked her some questions about communities of trans women in Philadelphia and the resources she felt were most needed. Like the majority of people I interviewed for this study, she emphasised that housing was the most urgent need, but we also talked about food security and healthcare. She told me about the discrimination that she had faced at large health institutions in the city and went on to criticise other large trans-serving organisations in Philadelphia, explaining, ‘They started out wanting to help people, but now it’s just a business.’

When I started to ask about how best to engage trans women as part of the HIV research that the health department was going to conduct, Tanya stopped me. She asked if I could explain again the purpose of the study that I was facilitating. I told her that the CDC wanted to understand the specific factors that shape the HIV epidemic among transgender women in order to design better prevention strategies. She leaned back in her chair and sighed. ‘You already know the answers to those questions,’ she said. ‘What happened is that somebody got a grant and they sent you here to talk to me, and now here you are.’

In this Position Piece, I explore the challenge Tanya makes to the optimism of community-based HIV research among trans women. Her comment struck me in part because she insisted on the spuriousness of my questions while at the same time seeming to indicate that she trusted me to understand her critique and thought it worth her time to engage in this research despite its flaws. Tanya engaged with my position as a physician-anthropologist trainee—one who stands for health institutions and their failings but who might also listen and respond. She insisted on the ethical necessity of including transgender people in health research, even as she was sceptical of such inclusion. For the remainder of this essay, I will follow Tanya’s lead as she points the way beyond the extremes of naïve optimism and fatalism.

Following another’s lead is a central concept in my larger work on gender-affirming care in childhood (Franklin 2020). I use it to refer to the shared commitment of clinicians, families, and anthropological interlocutors to defer to young people’s own knowledge of their gender identities. Here, I suggest that following Tanya’s lead helps us understand the limits of medicine’s power to redress social injustice without succumbing to fatalism and allows us to instead imagine social medicine in more collaborative and critical terms. By devoting her time to working with researchers, Tanya suggests that this is possible, but she nonetheless highlights the flaws of research that does not centre on the experiences of affected communities.

The unknown of HIV research

At first glance, the questions that the Centers for Disease Control and Prevention (CDC) posed in this study seem indeed to be urgent ones. The prevalence of HIV infection is much greater among trans women than among the population as a whole, with recent estimates suggesting that trans women are nearly 50 times more likely to be infected. This risk is even higher among transgender women of colour and particularly acute among young trans women (Baral et al. 2013; James et al. 2016; Frank et al. 2019; Garofalo et al. 2012; Jin et al. 2019). While the US National HIV Behavioral Surveillance (NHBS) was created in 2003, it did not specifically include transgender women until 2018.

Yet, as these data demonstrate, the impact of HIV on trans women has already been the focus of much health research, as have the social and structural contexts of this persistent epidemic. Trans women’s discrimination and mistreatment in many settings mean they are also unable to access HIV treatment or prevention services, or indeed other forms of healthcare. The 2015 US Transgender Survey (James et al. 2016) found that 23% of respondents had not sought healthcare during the preceding year due to fear of mistreatment, while 33% of those who had received healthcare in the preceding year had gone through at least one negative experience related to being transgender. As Tanya indicated, health outcomes are shaped by structural inequalities that manifest in the domains of housing, education, and employment, as well as in the effects of ‘minority stress’, all of which produce high rates of mental illness and substance use (Bockting et al. 2013; Nealy 2017). These interlocking vulnerabilities continue to drive high rates of HIV among other illnesses, as the disproportionate impact of COVID-19 has demonstrated.

All of this is to say that the literature certainly supports Tanya’s contention that the HIV epidemic among trans women has already been studied to a significant extent by different researchers—so much so that such research tacitly equates HIV with trans women. If health research on the subject of trans women’s health—and the impact of HIV in particular—has created this conflation, framing trans women as a population at risk, we should return to Tanya’s question and ask what the purpose of specifically including trans women in HIV research is. If we already know that communities of trans women are vulnerable to HIV, then what is the unknown that such research seeks to illuminate?

When research becomes a self-justifying cycle, it can run ahead of itself, losing touch with its subjects and turning into a ‘perversion of knowledge’ (Benjamin 2019, 116). Adriana Petryna elucidates this process in the areas of global clinical trials and runaway climate change. Her concept of ‘horizoning work’ is meant to recoup a possibility of response through ‘local and highly practical forms of research that attempt to bring an unknown or runaway future into the present as an object of knowledge and intervention’ (2018, 573; see also Petryna and Rendell, this issue). Uncertainty in this case is not the result of a ‘problem requiring more data’ (Petryna 2015, 163); rather, it is intrinsic to the politics and interests of maintaining an unknown as the steady state in research, hovering over those most at risk, in a way that forecloses a translation of knowledge into action. Here, in HIV research among the trans community, we see how invocations of the unknown prevent science from being brought to bear on an urgent problem: the reasons that HIV continues to disproportionately impact transgender women. As Tanya suggests, however, the answers to those questions are known ; the research itself (and the funding bureaucracy that mobilises it), productive of the unknowing, hinders that which it seeks to address. [2]

Optimism and action

There is a tension between the necessity and the redundancy of the questions that research poses about the social factors that perpetuate the HIV epidemic among transgender women. Tanya and other trans women I interviewed did not object to the trans women cycle of the National HIV Behavioral Surveillance (NHBS) and often framed the value of such a project in terms of inclusion. From the beginning of the formative assessment, many of my interlocutors told me that they were experiencing or had experienced research fatigue. They went on to explain that they were willing to endure such fatigue (trans women felt that they had been exhaustively studied and even objectified) if researchers asked the right questions. The perception was that they rarely, if ever, did. In particular, research did not make space for the narratives of trans women themselves. Furthermore, research rarely returned to the community, either in the form of data or health promotion. As Tanya’s statement illustrates, none of this should come as a surprise in light of substantial social sciences scholarship that has examined the objectifying impulse of medicine and health research (e.g., Gill-Peterson 2018; Good and DelVecchio Good 1993; Holmes and Ponte 2011).

But supplementing this data with trans women’s narratives is not necessarily a remedy—inclusion itself is a ‘cunning’ mechanism of liberal governance (Povinelli 2002). And, as anthropologist David Valentine illustrated, the category ‘transgender’ itself affords the possibility of recognition in public arenas at the cost of continued race- and class-based marginalisation (2007). In light of these dynamics, Tanya’s sceptical critique exposes a kind of mirage by drawing our attention to the implausibility of the implicit promise made by medicine. Rather than finding a point of reference to cope with the unforeseen dangers of changing circumstances, health research here sustains the illusory hope—the aforementioned mirage—that knowledge will ameliorate the burden of HIV among transgender women. This optimistic investment in the transformative possibilities of science belies the reality (obvious to community members and well-documented by researchers) that trans women are more at risk of HIV and many other health problems due to structural inequalities in healthcare access, housing, education, and employment engendered by pervasive anti-trans discrimination.

Of course, the CDC and local health researchers are not ignorant of the body of existing literature that explores the HIV epidemic among transgender women; on the contrary, it is what motivated the creation of the trans women cycle of the NHBS. My purpose here is not to suggest that this or any other particular instance of HIV research is inadequate in relation to any particular theoretical ideal, nor to parse the utility of knowledge creation from the point of view of public health practitioners (although such a critical evaluation would be valuable [Biruk 2018]). Instead, I follow Tanya’s lead and question whose hope is sustained by this mirage of medical knowledge? Whose optimism is placed in these knowledge-making efforts? [3] What does this mirage conceal? And what must happen for the knowledge that is produced by such research to become actionable? Ultimately, this research transforms anti-trans structural violence into an ordinary sort of public health problem, but what is not acknowledged is the limit of medicine’s unclaimed power to redress social injustice. Most disconcertingly, given the commitments of health researchers to pursuing work that serves trans women, research oriented toward social justice may, as Tanya suggests, simply beget more research, sustaining a techno-scientific optimism at the cost of truncating its own horizon of actionability.

Conclusions

In understanding the logic of this kind of mirage—that is, the illusory hope implicit in HIV research among transgender communities which fixes our gaze on the future and negates the past—I find psychoanalyst Donald Winnicott’s unfinished and posthumously published paper ‘Fear of Breakdown’ (1974) useful. In it, he wonders if what may be experienced as fear of some future event is actually ‘the fear of a breakdown that has already been experienced’ (idem, 104). Near the end of his essay, in a phrase that expresses his clinical perspective on a certain experience of breakdown but might just as easily describe our collective failures to confront HIV (and COVID-19), Winnicott remarks, ‘It is necessary to think not of trauma but of nothing happening when something might profitably have happened. It is easier […] to remember trauma than to remember nothing happening when it might have happened.’ (Idem, 106.) What Winnicott elegantly elucidates, despite writing about a different topic, is a kind of logic that powerfully characterises medical science’s affective investment in the future, which (i.e., the investment) is tied to its inability to apprehend and acknowledge the anti-trans violence of the past and present (Gill-Peterson 2018).

In other words, one problem with the attempt to make use of medicine as a tool of social justice is that this approach seeks in vain a foundational injury, which it then overrepresents as the determinant of present inequity. (By injury, I mean a pattern of violence that research could re-present as a problem to be remedied by medicine.) This method involves pushing the moment of violence into the past, making it impossible to acknowledge that it is not merely historical neglect but also present violence that trans women must contend with, a fact that medical research may merely obfuscate. Tanya helps us understand the futility of searching for such a foundational injury using the tools of health research, reorienting us instead to the ‘nothing’ that happened when ‘something’ might have, if only it could have been profitable. We should follow her lead, embracing neither futility and hopelessness nor the mirage of medical salvation, in order to build collaborative relationships in the service of a more caring social medicine.

Acknowledgements

Thank you to Nadia Dowshen, Siobhan Gruschow, and my collaborators at the Philadelphia Department of Public Health, as well as to the transgender women who graciously shared their stories with me. I appreciate the support of the University of Pennsylvania Medical Scientist Training Program. Thank you to my colleagues in the MD-PhD programme in anthropology, and to Sara Rendell for her work organising this special section. I am especially indebted to Michelle Munyikwa, Lee Young, and Shreya Subramani for their insightful comments on early drafts of this essay. Finally, I am deeply grateful to my advisor Adriana Petryna for guiding me in this work.

About the author

Joshua Franklin is a medical anthropologist and candidate on the MD-PhD programme in anthropology at the University of Pennsylvania. His dissertation, entitled Following the Child’s Lead: Care and Transformation in a Pediatric Gender Clinic , examined practices of gender-affirming care for children and adolescents. He is currently pursuing clinical training in psychiatry.

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