Negative, On PrEP: HIV Stigma and Queer(ing) Health Discourse on Grindr

This presentation was given on March 6th as part of a research showcase at the University of Minnesota. You can access the slides for this presentation here.


The purpose of my presentation today is to question how Grindr—a predominantly gay, location-based dating app—constructs understandings of sexual health and HIV through its interface design. This area of inquiry stems from a series of narrative-based user experience interviews I conducted with a group of young people living with HIV. In these interviews, I questioned how participants access, trust, and circulate health-related information using mobile technologies. From a public health perspective, Grindr’s interface ostensibly promotes open discussion around HIV, and its design intends to include and empower those living with HIV by allowing users to share their status on their profile, indicate if their viral load is undetectable, access FAQs about HIV, and/or indicate if they are on PrEP. Through my interviews with young people living with HIV, I found that many participants actively resisted Grindr’s design, rejecting the opportunity to share their serostatus or openly discuss HIV online, despite the app’s encouragement to do so.

My purpose today is to question how technical communicators understand moments when individuals resist or fail to fit within digital systems designed to include them, and, more specifically, I questions how narratives of HIV health circulate through Grindr’s interface and considers the implications for health technology design when users resist those infrastructures.

In this presentation, I will I share a small set of interview data when participants subvert or resist these digital infrastructures for discussing HIV. These instances of resistance, I argue, suggest that participants define and practice health differently than the definitions and practices of health that circulate in medical contexts. Using intersectional queer theory as a lens, I argue that Individuals living with HIV craft alternative epistemologies of health and risk by resisting Grindr’s interface design.  

Rhetoric and Technical Communication

Rhetoric and technical communication scholars have long aimed to describe how discursive technologies participate in relations of power (e.g., Scott, Longo, and Wills, 2000) and mediate processes of identification. I draw from many scholars—especially queer ones—in attending to issues of sexuality, technology, design, and desire. Blake Scott (2003), for instance, demonstrates how HIV testing technologies discipline subjects into categories of risky or safe, ‘dirty’ or clean. Similarly, Jonathan Alexander and Jackie Rhodes, in their introduction to Sexual Rhetorics (2015), suggest that queer rhetorical theory opens and analytic framework to examine “the regimes of discursive control through which bodies are disciplined and subjectivities reified as ‘straight,’ others ‘bent,’ and yet others illegible in different public spheres” (Alexander & Rhodes, 2015, p. 1). Rhetoric and technical communication, that is, provide a lens to consider Grindr’s interface as a pedagogical and rhetorical space, one where individuals learn which bodies are deemed healthy and desirable and which are not, and where relations of power are reiterated through digital interfaces. Technology designs establish a discursive framework that mediate how individuals communicate, interact, and identify with others around understandings of sex and desire.

Public Health and Reterritorializing Queer Space

It’s also worth noting that this project participates in conversations around public health and digital health technologies. Digital technologies have reshaped understandings of queer spatial relationships. Grindr participates in this trajectory through its design. Grindr uses a mobile device’s location to display up to 100 individuals who are close by. According to Crooks (2013), Grindr poses a “challenge to previously defined spatial arrangements,” like gayborhoods, gay bars, or gay-friendly businesses. Grindr repurposes physical geography to create alternative understandings of physical and sexual space. Grindr reinvents spatial arrangements, acting as an ulterior geosocial digital grid operating and fluctuating beneath a geography’s physical and infrastructural levels (Crooks, 2013).

This spatial reorientation has also reshaped public health initiatives for HIV. Public health researchers have long aimed to connect with “at risk” queer populations by infiltrating and occupying the few public spaces where queer folks feel safe, so that would be like doing outreach and testing at gay bars or at LGBTQ-focused events. As digital initiatives like Grindr redefine queer space, so too has public health shifted spatial methods to reach LGBTQ folks. Many of these initiatives include digital tools used to promote HIV treatment and prevention. For example, scholars and practitioners have designed digital interventions for treatment adherence (e.g., Ammassari et al., 2011), to allow individuals to discuss stigmatized health-related topics (e.g., Gabarron & Wynn, 2016), and to promote HIV risk reduction (e.g., Pachankis et al., 2013). As such, Grindr emerges as one of many digital spaces where public organizations seek to reshape and reterritorialize public health landscapes.

Positionality

I’d like to assess my positionality and how my personal experiences led me to this project. I’m a lily-white, able-bodied midwestern gay from a rural village. I became interested in HIV and sexual discourse online after I was diagnosed with my first STI. I had to navigate disclosure practices on Grindr, and I observed how sexual health discourses circulated among Grindr’s users. Most significantly, though, this project stems from my work with the Youth and AIDS Projects, a Minneapolis-based nonprofit that provides HIV medical case management, prevention, and advocacy for young people living in the Twin Cities, an organization where I have worked for over two years. My dissertation research consists of a series of interviews I conducted with clients at the Youth and AIDS Projects—a group of young people living with HIV, predominantly youth of color—to better discern how they incorporate digital technologies into their healthcare management.

Grindr’s Design

In 2016, Grindr updated its interface to include an option to list their HIV status. Grindr users—who are predominantly young men who have sex with men—can indicate whether they are HIV negative, HIV Positive, Positive and undetectable, or Negative and on PrEP. [Next slide] And just to clarify, PrEP, or Pre-Exposure Prophylaxis, is a drug regimen for people who are HIV negative. PrEP adherence reduces the risk of contracting HIV by up to 99%. Undetectable equals Untransmittable (U=U) recognizes that people living with an undetectable HIV viral load pose no risk of transmitting the virus to others.

Grindr’s redesign was described as a valuable opportunity to promote open conversation around sexual health within a community disproportionately affected by HIV on a site that receives approximately 3 million daily users. Jack Harrison-Quintana, the director of Grindr for Equality, said that the design was intended to “create an open dialogue among our users about sexual health. Honesty, compassion, and education lay the foundation to make Grindr an even safer space for guys to connect, and we can all contribute to getting there” (Davids 2016). [Next slide] And public health researcher Dan Wohlfeiler noted the application’s contribution to public health efforts:

“Providing men explicit profile options and easily-accessible, clear information about what they mean, are so important. First, studies have shown that knowing a partner’s status reduces high-risk sex. Second, having profile options where men can proudly say ‘I’m on PrEP’ normalizes PrEP for HIV-negative men. Offering HIV-positive men an easy way can take pride in saying ‘I’m undetectable’ does the same thing for other HIV-positive users. These are all powerful ways that gay men can encourage one another to take care of themselves and each other.” (cited in Davids, 2016).

While some HIV-positive individuals and groups pushed back against Grindr’s redesign, the initiative was framed as a way to promote more open discussion around HIV and to empower individuals around sharing their status.

Results

         When I spoke with individuals living with HIV, I often encountered instances where participants outright rejected this opportunity for empowerment and open discussion. One participant, who did not list their status on their profile or tell their sexual partners that they were HIV positive, said this:

“Bitches is out here asking stupid ass questions… Like I said, right before we’re about to hook up [they ask]: “Are you DDF? Are you neg?” Well, YES. Like bitch. So you know it’s like all these stupid ass questions, like. You know when you’re talking to people on Grindr, they be on such stupid ass shit, it’s like, are we going to have a real adult conversation where it’s like ‘yes, I’m undetectable’? No bitch. We’re not going to talk about that right now because clearly you don’t know shit about shit. And it don’t fucking matter to have this conversation right now.”

This person’s resistance to disclosure seems to contradict ‘safe’ sex discourse, and, for many people who are not living with HIV, this participant’s refusal could seem to unduly place others at risk. This participant repurposed terms designed to insulate the normalcy of HIV-negative individuals. Terms like “safe” and DDF (i.e., drugs and disease free) become rhetorical markers of which bodies are deemed safe and desirable. This participant resists and repurposes those codes—since this participant’s viral load is undetectable, it is effectively impossible for them to transmit HIV to a sexual partner (Cohen et al., 2011; Eisinger, Dieffenbach, & Fauci, 2019). This participant, then, not only refused Grindr’s digital interface, an interface ostensibly designed to empower more open discussions of HIV and to increase awareness around sexual health, but also revised, resisted, and repurposed the discourses used to determine which bodies are safe and which bodies are “risky”. This is one of the things I love about working with queer people. We see bullshit and we don’t put up with it.

Another participant—who self-disclosed as a recovering addict—indicated that their disclosure practices were more contested and situational than the first. They said:

“When I’m using drugs, I don’t really disclose [my status on Grindr]. There’s sort of this unstated code that if you use meth, then you’re kind of assuming that most people have STDs or HIV and you’re just kind of okay with it. I know I should be better about that and use a condom. But when I try to have ‘regular’ sex with ‘regular’ people not people on drugs then I disclose it.”

This participant engages in a range of health practices deemed risky and unsafe within medical understandings of HIV. Stemming from common sexual practices among injection drug users, they do not disclose their status, nor do they use condoms. For this person, medically sanctioned definitions of health and risk fail to account for the experiences of sex and desire that circulate within their community. Now I want to note—I’m not trying to say that one set of health practices is better than another. I’m just observing that public health and individuals living with HIV tend to operate under drastically different notions of what constitutes safety.  

What’s also noteworthy in this participant’s story is that HIV disclosure participates in or enables a regime of normalcy. When they indicate that they are more open about their status when having “regular sex with regular people,” they recognize that some bodies and experiences are normalized while others are rendered bent, broken, or queered among Grindr users. Rhetoricians might say that bodies become legible based on their compliance to Grindr’s design. This compliance is tethered to a range of normalized behavior, including drug use and HIV status. Grindr’s interface offers what Hubenthal (2017) describes as a normative healthcare arrangement, that is, systems that “disable and discard certain bodies while… restor[ing] normalcy to others” (p. 3).

What seems like a series of failures to comply with dominant understandings of sex, desire, wellness, and health reveals an ulterior set of health practices. Instead of emphasizing that this individual fails to comply with the digital system or the construction of health that the system enables, I argue that we should turn our attention to the moments of unruliness and resistance that this participant identifies as part of their health practice.

[Next slide]

For my dissertation, I use intersectional queer theory to understand moments of resistance. Queerness itself is often defined in terms of resistance to dominant ideologies, especially as those ideologies inform understandings of embodiment, sex, and desire (e.g., Jakobsen, 1998). HIV theorists similarly attune to resistance, emphasizing that the HIV-positive subject resists and redefines social constructions of health. Using intersecting queer and crip theories, for example, McRuer (2002) suggests that HIV-positive bodies are defined specifically by their refusal to fit within dominant constructions of able-bodiedness and sexual desire. McRuer’s work is foundational in HIV theory as a framework to “re-direct attention, continuously, to the unruly sort” and to celebrate the potential of “productively unruly bodies” (p. XXX). This attention to resistance similarly emerges in Black queer theory (e.g., Cohen, 2004). I draw particularly from Bailey’s (2016) description of embodied deviant acts among Black men living with HIV, acts resisting normative sexual regimes of risk and safety. These theories establish a form of participation rooted in resistance: individuals living with HIV participate in public health decision-making by resisting dominant constructions of ability, health, and desire, or forging “alternative epistemolog[ies] of sex” (Bailey, 2016, p. 236). Focusing on resistance is particularly productive in HIV prevention and treatment research, as resistance has historically been the avenue through public responses to HIV have changed; organizations like ACT UP shaped governmental and medical response to the AIDS crisis specifically through resistance, protest, and civil disobedience. As such, my study recognizes that resistant acts of people living with HIV offer a blueprint to revise medical and communicative responses to the epidemic.

Connecting queer and Black rhetorics of resistance is crucial to this project, both because sexual relations often intertwine with race relations, and HIV disproportionately affects communities of color (CDC, 2019). Leveraging queer theory, then, is not merely an academic exercise, but an orientation explicitly recognizing the social fabric from which my research emerges.  

Conclusion

While shrouded in a rhetoric of empowerment, safety, and transparency, I suggest that Grindr’s design open space to perpetuate stereotypes that individuals living with HIV are dangerous, diseased, or unsafe. Grindr’s design materializes people living with HIV as diseased subjects against which HIV-negative populations can project fantasies of immunity. The app’s interface ostensibly promotes ‘safer’ sexual discourse around HIV effectively deploys the queer HIV-positive body to functionally immunize and normalize HIV-negative populations. In speaking with people living with HIV, what emerges is not only a refusal to participate in the safe-sex infrastructure set in place by Grindr’s interface, but also the construction of an alternative epistemology of safe sex, guided by the embodied experiences of living with HIV. As technical communicators, rhetoricians, and public health researchers continue to seek more equitable and just digital and healthcare arrangements, I argue that we should emphasize resistance as a framework. A perspective rooted in resistance revises assumptions guiding health design initiatives—about what it means to live a ‘healthy’ life, for instance— and re-centers design values on users’ embodied experiences. 


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