HIV Care and “Subject Activism” in the Ruins of Neoliberal Islam
In Turkey, HIV has never been considered a domestic issue but a peril that only concerns Eastern European sex workers and Western queers, both perceived to be sexual deviants, hence, always-already ill. However the number of HIV diagnoses in Turkey has increased by 620% since 2007
According to recent data, the number of HIV diagnoses in Turkey has increased by 620% since 2007 and the AIDS-related deaths have more than doubled. In a context where HIV is addressed as a moral issue instead of a matter of public health, formal regimes of HIV care refuse to recognize HIV or those living with the virus; block access to testing, condoms, and pre- and post-exposure prophylaxis; impose monogamy as a scientifically legitimate prevention method; deny services, including in healthcare, to LGBTI+s and people living with HIV; and refuse, even punish, the need for sexual health education.
HIV prevention and treatment have become pathological in Turkey leaving people vulnerable to HIV and subjecting them to myriad yet entwined forms of discrimination once they are HIV positive. In response to the socio-medical violence and risk enacted by pathogenic HIV care, HIV activism emerged in Turkey as a political mode of care practiced by gay and trans HIV activists through intimate and anti-prophylactic networks of peer support, filling the care lacunae created by public health actors. In a context of what HIV activists call an acute and systemic HIVphobia, those who are debilitated financially, mentally, and physically by the regimes of HIV care are queer and trans folks who are HIV+ or at risk, particularly trans sex workers. In the face of medical and social abandonment, queer HIV+ folks become activists by providing care for their communities— HIV activism and HIV care here cannot be separated even analytically. In a context where queer and trans activists have to compete with local NGOs to be heard—because many nongovernmental organizations worry about the increasing presence of activists in the field who might “steal” their well-funded projects—and where public visibility might come at really high costs, activists organize rather stealthilyand offer each other ‘tiny acts of love’ and care, which is as necessary as antiretroviral medicine to stay alive and healthy.
Defining subject activism and activist care first necessitates a broader understanding of care as something that includes “everything that we do to maintain, continue and repair ‘our world’ so that we can live in it as well as possible” (Tronto 1993: 103). To understand activist care in its own terms requires taking the creativity and agency of the margins more seriously instead of easily dismissing them as insignificant acts of defiance. As Das and Poole (2004) always remind us, margins are not inert places—if anything, their marginalization is what grants them the creative power and energy to imagine and embrace alternative, political ethics of care. Sometimes “in a zone of exclusion and erasure, bare life asserts a stubborn connection to socially meaningful existence” (Comaroff, 2007: 209). And this stubborn connection shows the importance of not reducing people living with HIV into bare lives since “the virus and the syndrome are also a driving force of personal and political possibilities across the globe” (Biehl, 2007: 375).
Reclaiming their care and political work as ‘subject activism’ is also critical because the activists, and some HIV organizations too, do not want to be called patient activists or patient associations. The words patient and sick are both translated to Turkish as ‘hasta’. Hence, in order to say HIV patient, we would say a sick HIV+ person; or, to refer to patient activism, we would be saying sick activism. This lack of appropriate vocabulary becomes particularly harmful in the case of HIV, for HIV+ people are assumed to be always-already sick, diseased, and wandering around the boundary between life and death. It, therefore, becomes an essential aspect of political organizing to change the public perception of HIV from being a weakening sickness to an empowering tool of mobilization. As a trans HIV activist once expressed, “We are not sick, infectious or contagious; HIV is not a disease, it’s a virus; as long as we take our medicine, we are healthy and if we get sick, it’s not because of HIV. So, we don’t want to be equated with a deadly infection or to be thought as fragile or invalid”.
“Subject activism” refers to a form of HIV activism undertaken by queer and trans individuals in Turkey, particularly in Istanbul and Ankara, as a response to the inadequacies of existing formal mechanisms of care. In contrast to conventional patient activism, subject activism involves strategically navigating public visibility and surveillance, often through digital platforms, to raise awareness about HIV and create alternative narratives. The activists engage in peer support, challenging traditional notions of care by framing HIV as a community-building tool rather than a contagious threat.
Activists prioritize peer support as a life-sustaining strategy, emphasizing its importance in the absence of sufficient formal care mechanisms. They redefine care as a critical survival strategy that goes beyond traditional notions, focusing on interdependency, vulnerability, and community building. Activists utilize online platforms to openly declare their HIV status, challenging the socio-political atmosphere in Turkey. This digital activism serves as a tool to raise HIV awareness within the queer community and beyond, considering the lack of public figures openly identifying as HIV-positive in the country. Furthermore, subject activism challenges traditional HIV prevention strategies by resisting the constant emphasis on condoms and prophylactic measures.
Activists argue for an ethics of “promiscuous care,” which involves experimental and inclusive approaches to care, rejecting the traditional emphasis on protection and prevention. As such, activists adopt a pleasure-oriented approach to HIV care, emphasizing the importance of sexual pleasure and rejecting the imposition of sex-negative expectations. They assert that health policies must consider pleasure as an integral part of sexual health discussions. Finally, subject activism rejects the biomedical impulse to find a cure for HIV, viewing it as a eugenic call to sterilize the population. Instead, activists focus on eliminating stigma and discrimination, finding hope in community initiatives that generate alternative realities and prioritize sex-positivity and pleasure. Last but not least, queer and trans HIV activists metaphorically seek to infect institutions and the public with HIV consciousness as a way to politicize the virus. This involves challenging societal norms, engaging with legal and healthcare institutions, and inspiring HIV advocacy.
Comaroff, J. (2007). Beyond Bare Life: AIDS, (Bio)Politics, and the Neoliberal Order. Public Culture, 19(1).
Das, V., & Poole, D. (2004). Anthropology in the Margins of the State. School of American Research Press.
Tronto, J. C. (1993). Moral Boundaries: A Political Argument for an Ethic of Care. Psychology Press.
The author is Assistant Professor, Science and Technology Studies at Rensselaer Polytechnic Institute
Cover image from openverse. Marsha P. Johnson, Joseph Ratanski and Sylvia Rivera in the 1973 NYC Gay Pride Parade by Gary LeGault. Image by Dramamonster (Gary LeGault). This image was marked with a CC BY-SA 4.0 license