The Art Behind Stigmatizing Stigma – Neda Salami

It’s family night in a home somewhere in South Africa. As the sun sets, the spotlight slowly brightens. The curtain opens to a woman standing alone, center stage. The audience quiets down as this woman silently demands attention. No words as tears begin to roll down her cheeks, for there are no words to explain all she is feeling. She takes the audience back in time. The setting changes as we get a glimpse of this woman at age five, innocent and healthy as she dances around in a paisley dress to a happy song. The children in the audience enjoy this scene and clap their hands while the adults reminisce and appreciate the purity of childhood. The audience witnesses this girl age, from ten, fourteen, to eighteen and sees the girl playing with dolls, becoming an older sibling, going through puberty, falling in love, etc. All is happy and well, but as the spotlight weakens and the music slows, audience members can’t help but foreshadow that this fairytale story is about to fall into a deep, dark pit of tragedy. The setting transforms from lively and colorful to dark and grim. As the now-teenager walks down a lonely street, almost pacing to get home, a man grabs her from behind, taking advantage of her frail and virgin body. Parents in the audience cover their children’s eyes, terrified at the thought of their own children falling victim to the harsh realities of the world. The audience watches helplessly as this teenager tries to understand how the universe, so kind and fair, can suddenly turn so evil. After weeks of psychological turmoil and medical examinations, her life crumbles when she hears the words, “You have tested positive for HIV.” She faces discrimination and ridicule as strangers yell obscenities and accuse her of being a whore. The audience is brought back to the present as the woman with teary eyes begins to speak. She says, “I’m still innocent.”

This play has yet to be written, but it is based on a true story that needs to be

told. It may seem cruel to expose young children to such tales, but it would be worse to ignore harsh realities and allow the cycle of HIV transmission and public shame to continue. In 1998, a South African resident by the name of Gugu Dhlamini, a victim of rape, was stoned and beaten to death by her neighbors after publicly announcing that she had tested positive for HIV (McNeil, 1998). The irrational fear of living in the same community with an HIV-infected individual overpowered the compassion that would have been necessary to help Gugu recover both emotionally and physically. Gugu’s death by stoning discouraged other HIV-infected people from disclosing their condition. Incidents such as this must come to an end so that people aware of Gugu’s outcome will not be afraid to acknowledge their disease and receive treatment. To best foster awareness of the impact of stigma associated with HIV, we need a strategy that builds empathy. A person must be able to identify with someone suffering the negative effects of stigma in order to stop perpetuating that stigma in implicit ways. To target the feedback loop of silence, denial, stigma, and gossip and to create a culture of transparency and openness, there must be something that targeted audiences can feel, rather than merely hear or read on awareness posters. Theatrical plays, unique in their ability to induce emotions, would be strategic in educating South Africans about HIV and the stigma associated with it. Although some may see dramatic arts as merely a source of entertainment, this approach would help vividly display the negative aspects associated with stigmatizing a potentially fatal disease, such as social isolation and increased HIV transmission, while promoting fair healthcare and nondiscriminatory behavior towards HIV victims.

People who have revealed their HIV-positive status to their community are often ostracized or become the subject of gossip. Witnessing this type of communal response makes others more likely to keep silent about their condition. Their fear of being discovered often prevents them from receiving treatment and their silence, while it may protect them from social alienation, contributes to physical pain and suffering. Ultimately, the silence fosters the spread of the disease and increases the chance that a patient with HIV will develop AIDS. Governmental organizations and medical facilities in South Africa are aware of this ubiquitous stigma, but they also know that it will take both privately-funded organizations and social movements to lower the prevalence of AIDS and make the lives of HIV victims less emotionally and physically strenuous. Privately-funded organizations in South Africa invest more than one billion dollars each year into HIV/AIDS treatment programs, and although this may seem progressive for a developing country, these funds must first be targeted towards anti-stigma campaigns to increase the likelihood that HIV-infected individuals will take advantage of the available treatment programs (Avert, 2014). Woman, more so than men, have become very fearful of receiving treatment because, for decades, it has been extremely taboo for women to be diagnosed with HIV. Therefore, it is imperative that women become the key targeted audience of theatrical anti-stigma campaigns. Consequences faced by women living with HIV are loss of income and livelihood, loss of reputation and withdrawal of caregiving in the home (Mahajan, 2010). A community experiences panic and fear when a mother, culturally a symbol of fidelity and comfort, has the disease. Community members often resort to spreading rumors and publicly shaming the HIV-infected mother. Fearful of the impact of stigma, women are choosing to live with HIV in secrecy rather than receiving treatment in order to maintain respect within their communities, causing more fatalities and higher rates of transmission.

Before privately-funded organizations shift their focus from funding treatment programs to implementing artistic tactics to reduce stigma, it is important to determine whether or not staging a vulnerable state of an HIV victim would be considered mockery or cathartic. Thankfully, theatre has always been highly revered in South African culture. Historically, plays in South Africa have been performed everywhere, from formal theaters, to casinos, to sidewalks. What make these plays special are the writers who remain true to South African culture by limiting usage foreign actors or influences. The origins of South African theatre reveal it to be an oral tradition with young and old audience members gathering around a central fire to watch enactments of dramatic folktales, which would later evolve into onstage performances in formal theaters. Although the development of South African theater seemed to be moving at an exponential rate, this form of artistic expression was damaged during the unfortunate crossfire of the South African apartheid (McNeil, 1996). Racial segregation was so extreme that nonwhites were banned from watching or performing in white theaters. This took a toll on the value of theater for non-white South Africans, making ethnic renditions of plays much more important. Similarly, in the case of HIV/AIDS plays, it will be necessary for the participants in these plays to be local community members. This will allow the audience to feel stronger connections to the issues that are being discussed, making audience members more prone to understanding the content of the play and applying it to their own lives. Although separation of theaters on the basis of skin color is no longer prevalent in South African society, there is still a widespread belief that plays featuring local actors are much more relatable and therefore effective.

Theater is a form of art that will target the secrecy and the divide between HIV victims and the rest of the community. Performances would be more effective featuring voices of community leaders rather than foreign health promoters because it would make the idea of reducing stigma seem less radical and more familiar. In the past, community participatory programs in South Africa have been run by educators who would discuss HIV preventive measures in classroom-like settings (Sengupta, 2011). What makes the theatrical approach different from previously attempted community measures is that rather than taking on the role of teachers, the community health promoters would take on the role of artists. Art has long been known as a method of creative expression wherein people are able to express raw emotions without feeling vulnerable since they are essentially filling a role. Nonetheless, even community health promoters who are actually infected with HIV and are comfortable with reenacting what they experience on a daily basis could bring to life the “based on a true story” theme. Based on prior knowledge of the discrimination known HIV victims have faced, the actors may not want to reveal that they are infected with the disease off-stage as well, but as time progresses and as these plays become widespread and popular, the stage will serve as a therapeutic haven for infected people to finally reveal their status and receive treatment. The theatrical performances would take place in public spaces, such as local cafes, where community members have been before on several occasions. By utilizing a community hotspot, directors can ensure audience members feel safe and comfortable while viewing something that may not be so comfortable. This paradoxical situation will maximize the intensity of emotions when the audience members are suddenly taken from a place of great familiarity to foreignness, mirroring the pain that HIV victims face everyday. The beauty of these plays is that they are not age-specific. It is in fact encouraged that children view these performances as well to help condition younger generations to rid future societies of stigma and discrimination.

 Essentially, the plays would not focus on just one form of stigma, as it branches out into several categories including governmental stigma, healthcare stigma, employment stigma, and of course, community stigma. The people testing positive for HIV are being hit hard from every angle, not just from their neighbors or street vendors. In order to account for different types of stigma in the theatrical performances, the specific content of the plays would vary based on the location of the performance. For instance, in inner cities, the performances would feature the life of HIV-infected employees versus uninfected employees in the workplace. Audience members would witness how the head of power initiates discrimination and how it ultimately trickles down into jokes, isolation, and even termination. Most importantly, these organized plays would include educational segments that describe the many possible routes of HIV transmission, aiming to lower the presumptuous thoughts about someone who became infected with the disease. What makes testing positive for HIV taboo for women is that it is almost always correlated with infidelity in relationships. However, people must become aware that HIV can be transmitted through injection drugs, blood transfusions and even from mother to child during pregnancy or through breast-feeding. Just like in the play based on Gugu’s experience, the audience will start to understand that in many cases, HIV transmission is not a result of intended behaviors, but of the animalistic behaviors of criminals.

 What makes this stigma so devastating is that beyond impacting the psyche of an infected individual, it marginalizes people from the rest of society, making access to basic care and necessities extremely difficult. Theatrical performances would help to artistically reveal the social and physical difficulties HIV victims face. In order to prove that these methods will actually reduce stigma and increase the likelihood that the infected person will receive treatment, surveys would be administered before and after the performance of these plays to those who have publicly announced their HIV positive status. The premise of these surveys would be to determine whether or not HIV-infected individuals are treated differently from the rest of society. Participants in this survey would also be asked to write daily journal entries about how others interacted with them in social settings. For example, participants would be asked to keep track of any instances of discrimination or discomfort they encounter. After multiple performances of the plays throughout the participants’ local area, these entries would be collected to analyze whether or not HIV infected individuals had become more socially accepted. In any case, these plays would help to spark conversation and possibly lead to even more effective mechanisms that would destroy HIV stigma. Not only would HIV-infected individuals feel happy and accepted in society, but also they would reduce the possibility of transmitting HIV by keeping their conditions undisclosed.

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Works Cited

 AIDS Discrimination and Stigma: How to Cope. (2012). Retrieved April 23, 2015, from http://www.webmd.com/hiv-aids/guide/aids-discrimination-stigma-how-to-cope

Apartheid. (2014, May 8). Retrieved April 15, 2015, from http://www.history.com/topics/apartheid

 HIV & AIDS Stigma and Discrimination. (2014, March 1). Retrieved April 19, 2015, from http://www.avert.org/hiv-aids-stigma-and-discrimination.htm

 HIV, stigma and discrimination: What is stigma? (2015). Retrieved April 22, 2015, from http://www.aidsmap.com/stigma/What-is-stigma/page/1260706/

 Mahajan, A., Sayles, J., Patel, V., Remien, R., Sawires, S., Ortiz, D., . . . Coates, T. (2010). Stigma In The HIV/AIDS Epidemic: A Review Of The Literature And Recommendations For The Way Forward. AIDS, 23(11), S57-S65.

 McNeil, D. (1996, May 19). In South Africa, Bringing Theaters to the Townships. Retrieved April 24, 2015, from http://www.nytimes.com/1996/05/20/business/in- south-africa-bringing-theaters-to-the-townships.html

 McNeil, D. (1998, December 27). Neighbors Kill an H.I.V.-Positive AIDS Activist in South Africa. Retrieved April 24, 2015, from http://www.nytimes.com/1998/12/28/world/neighbors-kill-an-hiv-positive-aids- activist-in-south-africa.html

 Sengupta, S., Banks, B., Jonas, D., Miles, M., & Smith, G. (2011). HIV Interventions to Reduce HIV/AIDS Stigma: A Systematic Review. AIDS and Behavior, 56(13), 1075-1087.

 South African Theatre. (2015). Retrieved April 24, 2015, from http://www.mediaclubsouthafrica.com/component/content/article?id=108:theatre

Mason Allport

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