Re-framing HIV

After nearly four decades, social workers continue to be on the cutting-edge in their work with HIV-positive clients, at-risk communities and a society that continues to stigmatize them.

BY TYNAN POWER

Cover photo: The Psychic Life of Stigma. Project Stigma, Brighton, UK. Pastel and ink drawing cocreated by workshop participants and artist Laura Ryan in conjunction with Brighton community partner, Higgins Trust.

In the 39 years since the Centers for Disease Control and Prevention first published a report on the mysterious disease that would come to be known as HIV/ AIDS, neither the disease nor the stigma surrounding it has been eradicated. From the start, social workers like David Aronstein, M.S.W. ’80, and Bruce Thompson, Ph.D. ’87, co-editors of the groundbreaking HIV and Social Work: A Practitioner’s Guide, helped forge new paths forward with clients facing both the poorly-understood new disease that was spreading swiftly and nearly always fatal—and the growing fears and prejudice that surrounded it. Today, new treatments and prevention tools like PrEP (pre-exposure prophylaxis) have slowed infection rates and transformed HIV infection from what felt like a death sentence into a chronic illness.

Yet, despite these medical advances, the deep stigma that attached itself to HIV early on has not dissipated—and social workers continue to rise to the challenge of providing support and education to those directly affected by the disease and the larger communities in which they exist.

Assistant Professor Rory Crath, M.A., Ph.D., has spent his career exploring the ways in which social, health and economic disparities and exclusion affect individuals and communities. His current research project, Reframing HIV Stigma: Towards a 5 Cities Research Programme, seeks to understand the wide-ranging effects of stigma as it is experienced by individuals of diverse identities in five cities around the world: Brighton (Europe), Delhi (Asia/Asia Pacific), Havana (Latin America/Caribbean), Nairobi (Africa) and New York (North America). Reframing HIV Stigma is a community-driven, collaborative project in which Crath is working with co-investigators Annette Carina van der Zaag, Ph.D., of Birkbeck University of London, Paul Boyce, Ph.D., of the University of Sussex; Anupam Hazra, associate director of Programs for Solidarity and Action Against The HIV Infection in India; Amrita Sarkar, co-founder of IRGT —A Global Network of Trans Women and HIV and member of the Transgender Professional Association for Transgender Health; Denis Nzioka, Project Officer for HivosEast Africa; Olga Saavedra Montes de Oca, Ph.D., of the University of Sussex University, and Rosaida Ochoa Soto, Ph.D., of the National Institute of Hygiene, Epidemiology and Microbiology and director of the National Centre for the Prevention of STIs-HIV/AIDS in Havana. Each of the cities in the project is part of the international Fast-Track Cities initiative that was launched in 2014 and currently includes more than 300 cities and municipalities across six regions of the world. Each of the cities is committed to ending the HIV epidemic by 2030, an ambitious goal that includes providing access to testing, treatment and prevention services—and a commitment to end stigma and discrimination.

These photographs are part of Rory Crath’s current research project, Reframing HIV Stigma: Towards a 5 Cities Research Programme. They depict transgender and hijra/kinner identifying participants returning to various social settings in Delhi, India where they have experienced the violences of stigma. But in their collective return, they rewrite the terms of stigma through their art-making. Participants wanted to reclaim these places by staging a defiant presence. The photographs document the intimate acts, spaces and experiences of stigma—as captured in peoples’ eyes, bodily comportment and gestures. Each photograph assembles a different situated knowledge about stigma. Together these images point to stigma’s embodied effects and the creative, collective responses it can generate.

“Fast-Track Cities is a United Nations based initiative and the cities themselves identify that their priorities align with the Fast Track Cities,” said Crath. “These cities might have different politics than their national government. For example, there are a number of cities where HIV politics and sexual politics are misaligned with the politics of the state. So this is very much a local initiative, in that sense, but the objectives and goals are global.”

One of the most devastating causes of the stigma associated with HIV has historically been the mistaken belief that only gay men can contract it—and therefore only gay men should be tested. Because of this perceived association, bias based on sexual orientation has then carried over to anyone who seeks testing.

“Some health care providers are reluctant to test their patients, because they do not think the person is at risk,” said Traneika Turner-Wentt, M.S.W. ’00, D.S.W., LCSW “They say ‘This person is [heterosexually] married, they have children.’”

Turner-Wentt has seen this play out repeatedly in her decades of work in healthcare settings. She is currently the prevention and testing program manager at Parkland Health & Hospital System in Dallas, which is currently ranked the top performing program for Emergency Department HIV testing in the state of Texas, testing nearly 60,000 patients per year.

“In HIV prevention, increasing patient awareness of their need for testing is not enough,” said TurnerWentt. “All healthcare providers must implement best practices by following CDC guidelines: In communities with an elevated positivity rate (greater than 0.1%), routine testing is recommended, and more frequently for individuals with increased vulnerability for exposure to the virus. It is imperative that the health care community bid farewell to the outdated mindset because those archaic social constructs do not apply to the preventive paradigm and certainly do not support the robust efforts to end the epidemic by 2030. The multidisciplinary team must translate national goals into best practices within our respective disciplines.”

“Social workers are particularly important in helping end the stigma around this disease,” said Turner-Wentt. She offers an example of misinformation about the high incidence of HIV infection in communities of color—and how social workers can provide correct information.

“It is known that people of color in general, but particularly black people, are disproportionately affected by many diseases in the U.S. When you begin to unpack the possible reasons for that, there is always the factor of systemic racism, which has the ability to affect people in every area of their existence. Upon closer examination you will find that the roots of health disparities are embedded in the social environment. People who are experiencing housing insecurities, those without a method to market their skill set for a better income, or who have not attended an institution for higher learning are more severely impacted. Ending the epidemic means we have tackled some of the other issues that surround the issue of health disparities.”

“Social workers can help make others aware that people of color do not necessarily have behaviors that are ‘worse,’ they simply have more vulnerabilities in their environment, which places them at a greater risk. For instance, a man of color who has sex with other men is not necessarily having any more risky sex than a Caucasian man who has sex with men. In fact, studies have shown that men of color may have less risky behaviors, however, because there is a higher concentration of the illness among people in certain zip codes, that increases their vulnerability for acquiring the disease. Social service providers have a keen ability to understand the person in relation to their environment and as we become more aware of this type of research outcomes and disseminate those truths, we can improve the awareness of those with whom we work—especially in the healthcare system.”

Research often focuses on public health ramifications of stigma, such as the barriers to testing and treatment that Turner-Wentt has observed. Crath’s project explores stigma through a lens that is not trained exclusively on health care, but rather as a factor that impacts many aspects of lived experience. Using Embodied Mapping, a methodology Crath developed with Cristian Rangel, Ph.D., of the University of Toronto, and Adam Gaubinger, M.S.W. ’17, the project seeks to gather participants’ context-specific knowledge of HIV and stigma, while documenting how visual methods for exploring the subject can identify and open up fresh areas for research.

Crath has described Embodied Mapping as a tool for capturing a more complex human subject than the purely rational, medicalized body that is often conceptualized by conventional research. Holding room for the whole person in their relationship to social and material environments is a strength that social work brings to research with human subjects—and allows for a research framework that assumes the complexity of existing with a body, emotions, aspirations and a host of connections to other people and communities and systems of power. The resulting findings should shed light on the variety of ways that HIV and stigma are experienced, understood and integrated into the lives of people of diverse identities in very different geopolitical locations.

Embodied Mapping typically involves using multiple artistic elements with a visual collage effect designed to capture complex embodied experiences and interactions. To reflect the differences between groups of participants, Crath’s methodology is flexing to allow participants to drive the creative methods as well as the conversation.

“The workshop in Delhi happened over four days,” said Crath. “Participants—who identified with a variety of terms including ‘trans women,’ ‘trans feminine,’ and ‘hijra’ [a gender identity specific to South Asian culture]—came together with artists, including some who identified with the communities. There were initially three photographers and two storytellers who sat with participants and talked about experiences of stigma in Delhi, and about their involvement in activism and health care.”

“ Photographers documented them marching defiantly through these locations, staging their experiences—and also captured the stigmatizing expressions of other people who were watching.” —RORY CRATH

“In thinking about what kind of art objects they wanted to create, the participants decided they wanted to bring in choreography and mehndi [a traditional form of temporary body art using henna],” said Crath. “Groups went to places in Delhi that were evocative of stigma for the participants. Photographers documented them marching defiantly through these locations, staging their experiences— and also captured the stigmatizing expressions of other people who were watching. The photographers made prints of those images and the participants selected a few, then brought in the mehndi and choreography. The results of the participants’ embodied and storied performances about how stigma is lived were then captured by a videographer.”

While the creation of art has been a key means of documentation and expression from the earliest days of public education and activism about HIV—with the Names Project: AIDS Memorial Quilt being perhaps the best known example—the results of Embodied Mapping provide more than

“ Photographers documented them marching defiantly through these locations, staging their experiences—and also captured the stigmatizing expressions of other people who were watching.” —RORY CRATH

creative catharsis and personal expression. The method can help identify previously unexplored ways in which people affected by HIV are impacted by—and impact—the contexts in which they live. Comparing these can bring to light the ways that these impacts are the same—or differ—across identities and locations.

In Texas, Turner-Wentt sees anxiety and depression as frequent companions to HIV and one of the ways that stigma affects the populations she serves.

“There is a visceral response that accompanies a highly stigmatized medical diagnosis—fear that someone will see them at the clinic and discover that they have an HIV positive status,” said Turner-Wentt. “To combat that, we have to create a welcoming and affirming healthcare environment for all patients. Fortunately, our health system has dedicated ID (infectious disease) staff who are caring, compassionate leaders in the medical field. This encourages patients, many of whom are managing challenging life circumstances, to access services. Having that safe space can create an opportunity for patients to be more open about mental health symptoms. For a patient who is not only doing their best to manage one aspect of their physical health, while dealing with mental health issues, which are often exacerbated by challenges in the social environment, having the support of those with whom they personally interact and knowing that there is a global movement to close gaps in existing services and also end the epidemic, it can be reassuring.”

“We are at a pivotal juncture and have all the tools we need to end the epidemic. The key is to consider the ways in which people make decisions,” Turner-Wentt said. “Taking the easy route exacerbates disparities. Leaders in this movement must address the concerns within the environment to increase the uptake of the intervention.”

Knowledge of the ways that HIV and stigma impact people across different aspects of their lives is information that is known to people living with HIV and to those who are shifting the paradigm to end the epidemic by 2030, like Turner-Wentt. Yet these hyper-local and context-specific bodies of knowledge are often missing from the broad scope of many HIV-related initiatives.

“I think what we’re really interested in is for policy makers and health care practitioners to really listen, to hear what’s already being lived and known on the margins,” said Crath. “When we talk about eradicating stigma, what exactly are we doing? What gets eradicated? We don’t want to lose sight of how deeply painful and wounding stigma is, but we want to look at how stigma is lived and what’s activated because of it, what gets created—like new language or forms of political or artistic expression or community mobilization and care based on shared experience.”

“In a way this work feels synonymous with excellent clinical work— and it relates to the work I do in the classroom,” said Crath. “We have to be listening for what people are bringing to us, making sure our end goals are in line with what the people we serve are saying they need. We have to ask ourselves if we’re setting futures for clients that reflect their own hopes, or if we are setting futures that leave the client and the community behind.” ◆