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! Not in Our Blood: The "Otherin g" of HIV/AIDS in South Carolina BY KORTNEY H. LAPEYROLERIE A Thesis Submit ted to the Division of Social Sciences New College of Florida i n partial fulfillment of the requirements for the degree Bachelor of Art s Under the sponsorship of Dr. Erin Dean Sarasota, Florida May, 2013
! "" A cknowledgements There are many people and institutions that I wish to thank for their support and contributions to this thesis. First and foremost, I would like to than k my family for their constant support throughout fieldwork and the writing of this thesis. I would especially like to thank my par ents, Jacqueline and Daryl Lapeyrolerie for their unconditional love, constant reminders to think critically, and for provi ding trans portation to my fieldwork I would also like to thank my sisters, Erin and Lillie Lapeyrolerie for showing their special version of support and giving me not so subtle r eminders to write my thesis. I would also like to thank the members of my committee, Dr. Erin Dean, Dr. Uzi Baram, and Dr. Maria Vesperi. I would like to thank Erin Dean for reading my thesis mo re times than anyone ever will, for offering careful and thoughtful crit iques, for her constant belief in and reassurance of the value of my work, and for her remarkable patience. I would also like to thank her for guiding me through the world of the anthropology of development. She taught me to look beyond the mission statement of non profits and to think critically about their practic es. Without these lessons, this thesis would have never come to mind. I would like to thank Uzi Baram for his belief in my work as an anthropology student and as an advocate for social justice issues. I would also like to thank him for teaching me the v alue of public outreach in anthropology and for giving me opportunities to practice it. I would like to thank Maria Vesperi for encouraging me to not be afraid of speaking up and speaking out both in class and in my work. Additionally, I would like to th ank the HIV/AIDS prevention coordinators, case managers, and other caretakers at the Agency for allowing me to witness their day to day lives, to interview them, and to ask a lot of question s. This work would not exist without their words and experiences. I also would like to thank many of them for allowing me to witness their humor, compassion, and empathy in their work with people who live with HIV/AIDS in an often stressful environment. Finally, I wou ld like to thank my friends. I would like to thank Minorateam (Farrell Ocasio, Mariana Zapata, Marliz Calleja, and Pau la Pulmano) for being an unstoppable friend group and my courageous sisters in social justice; Marie Van Camp and Naushin Ji wani for their support with daily long distance thesis check ins ; Timbi Shepherd for sharin g my appreciation of a weird movies and donuts to lessen the angst; and Ashley Parks, Janardana Hayton, H ilary Ramirez, and Tyler Pratt for reminding me to take breaks, specifically in the form of adventures
! """ A cknowledgements i i Table of Contents i ii List of Acronyms v Abstract vi Introduction 1 Chapter 1: A Hidden History of HIV/AIDS 15 The Emergence of HIV/AIDS in South Carolina 19 Angela's Story 22 Ignoring Prejudice and Combatting Structural Violence 25 Structural Violence in Funding for HIV/AIDS Initiatives and Programs 27 Chapter 2: Prevention Services 30 SISTA: Culturally Specific Feminism 36 Poverty and Feminism in HIV/AIDS Prevention 39 Ladies' Night In: A Message of Prevention to Senior Citizen s 43 Ageism in HIV/AIDS Prevention 44 Community Meeting 45 Race, Classism, and Linked Fate Politics 53 Racism and Homophobia 60 Othering in Racism and Homophobia: Klara's Story 61 Othering, Media Portra yals, and HIV/AIDS 63 Chapter 3: AIDS Related Services 66 Case Management 68 Isolation Related to HIV/AIDS: Margaret's Story 71
! "# Isolation and Fear of Stigma 75 The Clinic 78 Stigma, Discrimination, and Loneliness: Noah's story 81 Isolation and Discrimination 83 Conclusion 85 Further Research 87 Appendix 93 References 9 7
! v List of A cronyms AAA AARG ADAP AIDS CDC DHEC HIV HOPWA IDU IRB LGBTQ MCC MSM MSW NAACP OI PLWHA Project F.A.I.T.H. SCDHEC SCHAC SES SISTA SMA STD STI WSM American Anthropological Association AIDS and Anthropology Research Group AIDS Drug Assistance Pr ogram Acquired Immunodeficiency Syndrome Centers for Disease Control and Prevention Department of Health and Environmental Control Human Immunodeficiency Virus Housing Opportunities for People with AIDS Injected Drug User Institutional Review Board Lesbian Gay, Bisexual, Trans*gender, and Queer/Questioning Metropolitan Community Church Men Who Have Sex with Men Men Who Have Sex with Women National Association for the Advancement of Colored People Opportunistic Infection People Living with HIV/AIDS Project Fostering AIDS In itiatives that Heal South Carolina Department of Health and Environmental Control South Carolina HIV/AIDS Council So cioeconomic Status Sisters Informing Sisters about AIDS Society for Medical Anthropology Sexually Transmitted Disease Sexua lly Transmitted Infection Women Who have Sex with Men
! vi NOT IN OUR BLOOD: T HE "OTHERING" OF HIV /AIDS IN SOUTH CAROL INA K ortney H. Lapeyrolerie New College of Florida, 2013 ABSTRACT This thesis posits that stigma and othering, secured and fortif ied by structural violence, surround the community of people living with HIV/AIDS in South Carolina. This thesis is largely based on ethnographic research carried out at an HIV/AIDS prevention and HIV/AIDS related services center, which I call the Agency. The following chapters are a combination of data from the field site with historical research. A brief national and local historical account look into how the roles of stigma, othering, and structural violence played a role in reporting about HIV/AIDS a nd the care of people living with HIV/AIDS ( PLWHA ) Data from fieldwork explores how the Agency' s prevention services faces the challenges of preventing HIV/AIDS in an environment of stigma, othering, and structural violence in South Carolina. Further f ieldwork explores how stigma, othering, and structural violence affect s interactions between case managers and other caretakers in AIDS related services and PLWHA. Concluding thoughts explore the connections between the HIV/AIDS epidemic and stigma, other ing, and stru ctural violence internationally. Dr. Erin Dean Division of Social Sciences
! 1 Introduction The plastic covering on the golf cart flapped as the parking attendant sped along, transporting me from my car to the entrance of the hospital. Al ong the way, he talked about the boiling day and how the plastic came in handy during the winter months. I nodded, breathless as the wind hit my face. When we reached the door, I thanked him, and headed into a hospital that looked like others that I had entered before. For me, e normous hospitals with parking attendants, advertisement campaigns, choice of physician, and the newest techno logy have been my personal reality of healthcare However, that day, in the summer of 2011, was not about accessing ca re. Instead, I was there to discuss an alarming trend that I had recently discovered, the meteoric rise of human immunodeficiency virus/acquired immunodeficiency syndrome ( HIV/AIDS ) in black American women. Little in depth academic research existed on t his tre nd and I wanted to contribute to the literature through an anthropological examination of the topic for my undergraduate thesis The man wi th whom I had an appointment to discuss the matter practices as an infectious disease d octor and is one of th e top specialists in HIV/AIDS in South Carolina. If anyone could tell me about the local HIV/AIDS epidemic in South Carolina including how it was affecting black women specifically, he certainly could. He also r uns an HIV/AIDS clinic, which I thought mi ght serve as potential field site Once in his office, I told him about my interest in s tudying HIV/AIDS in black women and my interest in potentially carrying out my study in his clinic. The doctor did not dive right into the topic of HIV/AIDS in black women, other than to say that it was a problem in S outh Carolina. Instead he first asked me about my major and my
! 2 postgraduate plans Then, he told me the story of a medical student whom he had helped go to Haiti to work at a clinic, which served a sub stantial number of HIV/AIDS patients. He explained how the student ended up highly depressed, surrounded with disease and death for which there was little he could do When the doctor finished this story he asked if I thou ght that I could handle a simil ar situation. I responded that I could not actually be sure unless I experienced it myself However, I told him, I thought that I could. He repeated the question again and stared at me for a moment. Only after that moment did he talk to me at a rapid fire pace, about my potential research The doctor told me that HIV/AIDS was a problem beyond black women. The rate of new cases in South Carolina was expanding quickly He agreed that the majority of new HIV infection cases were, at least in South Car olina, found in black women. He pulled up charts on his computer from the state health department's website to give me visual confirmation. However, for hi m, the bigger story existed in how South Carolina handled "delicate" issues related to HIV/AIDS an d other sexually transmitted diseases and infections ( STDs/STIs ) The doctor complained about an inability to op enly educate the community o n issues surrounding sexuality that could prevent transmission He expressed a particular frustration over not bei ng able to converse freely with youth. He explained how poverty left some teenage girls yearning for something that they could call theirs, a baby, and how it put them at risk for contracting an STD or STI. He spoke about the inability to hand out condoms on public college campuses. He revealed how, in certain instances, doctors treated a heterosexual married couple for an STD or STI without telling the wife that for which she was being tre ated, at the husband's request.
! 3 After the doctor finished talking about these issues, he moved on to talk about his cli nic. He said that sometimes his patients from the hospital who were HIV positive would request follow up visits at the clinic He responded that they could, but that they would have to be tolera nt of people who were different from them. This included, he said, people who had not bathed for quite some time or men holding hands in the waiting room. He insisted that e veryone needed care, love, and support. Soon, our allotted appointment time was up. I asked if I could visit his c linic and he agreed Sometimes, he explained elected government officials tour ed the clinic, sat in during group sessions, and talk ed to some of his patients. Of course, t his only occurred after going through the processes o f paperwork and consent. He suggested that, perhaps, I might want to experience his clinic's HIV/AIDS support group sessions. He also suggested that I could volunteer at his clinic as a way to get my fieldwork done. I left his office that day believing that I would be exploring the lives of those infected with HIV/AIDS in his clinic. Shortly after that visit, I calle d the doctor to ask about the procedures of receiving the proper consent from pa tients. He asked me how exactly I plan ned to gather infor mation from patients. I attempted to explain the process of ethnography, which I had previously mentioned during the office visit. He told me that I needed to use the scientific method, come up with interview questions, and send them to him so that he an d his institutional review board (IRB) could approve them. I tried to explain to him, again, that ethnography goes beyond the collection of date through quantitative methods and that I would focus more on qualitative data.
! 4 At that point, t he conversatio n picked up the pace He needed a set methodology from me. He said that I could not just sit around and collect data. I asked if I could perhaps carry out my ethnography during specific group sessions. After all, elected government officials sat in t o take stock of the needs of the people, simply after signing the paperwork that his clinic provided. I would be bound by my institution's IRB, his institution's IRB, his clinic's forms, and the ethics of anthropology not to reveal any identifying details of those involved in the study. To him, this did not seem matter. He said that there was no way that I would not give details to someone: a professor, a classmate, a friend. After that conversation, we exchanged a few uncomfortable e mai ls before I dec ided that his clinic would not be a viable option for fieldwork. At first, I was baffled as to why he seemed to be defensive However, this bafflement quickly shifted to curiosity about what was being hidden. I also looked around for other agencies i n the area that served people living with HIV/AIDS ( PLWHA ) I found only one, wh ich later became my field site, but not without difficulty. I begin with this anecdote because it illustrates what I came to understand about the community of PLWHA in South Carolina It exist s in a hidden and isolated community because of the envir onment that surrounds it It seems telling that before the doctor began speaking to me about HIV/AIDS in South Carolina, he talked about the "hopelessness" of Haiti and asked me if I thought that I would be able to handle it. Did he feel a sense of hopelessness of South Carolina's culture surrounding the HIV/AIDS epidemic? He expressed frustration about his consistent inability to distribute preventative information and resource s to youth in South Carolina's location deep in the ultraconservative, so called "Bible Belt." In South
! 5 Carolina, the topic of HIV/AIDS is linked with taboo topics, including but not limited to sex, sexuality, and drug use (Skerritt 2011). The stigma att ached to these taboo topics is in turn, connected with the PLWHA community. In my research for this thesis, I found that this stigmatization often leads to discrimination. Beyond just PLWHA, the PLWHA community also includes health care providers, preven tion coordinators case managers, and other care takers for PLWHA. Due to the fact that those linked with the PLWHA community are stig matized, the community is basically hidden in o rder to protect itself from discrimination So, the doctor's reservations about letting me, a n undergraduate student with research methods that he neither understood nor considered valid, study his clinic becomes clearer. He probably felt uneasy that he could not guarantee that I would not compromise the confidentiality of his clinic, which exists in a hostile environment. An exploration of what makes the environment surrounding HIV/AIDS in South Carolina hostile serves as the topic of this research. This thesis posits that stigma and othering, 1 secured and fortif ied by struc tural violence, surround the PLWHA community in South Carolina. Anthropology of HIV/AIDS An air of confusion hung o ver my conversations in the field after I explained that I was not a student of epidemiology, but rather of anthropology. A common inquir y posed to me throughout fieldwork included why anthropology and not epidemiology? To those who asked, there did not seem to be much of a difference between the two, plus !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!! 1 One definition for othering is "transforming a difference into otherness so as to create an in group and an out group" (Staszak 2009:43). The other that makes up other ness is "a member of a dominated out group, whose identity is considered lacking and who may be subject to discrimination by the in group." In this case, mainstream South Carolinians comprise the in group and the PLWHA community comprise the out group.
! 6 with epidemiology I had a greater chance of bolstering my studies with statistics. While epidemiology has certainly enriched and in formed this work, it has not functioned as the primary le ns. I will attempt to clarify the differences between the disciplines. After that, I will break it down further into how an anthropological lens has been, and is used to study HIV/AIDS. Medical anthropology and epidemiology overlap in significant ways. One definition of epidemiology describes it as a field concerned with the patterns of disease occurrence in human populations and the factors that in fluence these diseases" ( Lilienfield and Stolley 1994 :3). One definition of medical anthropol o gy describes it as a field that examines how "disease patterns, social norms, and socioeconomic arrangements are intricately interrelated" ( Joralemon 2010:11). So b oth examine different disease patterns in different human populations Both look into factors that seem to correlate with the occurrence of disease Due to similarities, some argue that the view of epidemiology and medical anthropology as separate f ields should be diminished (Trostle and Sommerfeld 1996:254) Nevertheless, important distinctions between epidemiology and anthropology exist. However, while anthropologists value qualitative data, a n epidemiologist typically present s the correlation wi th mainly quantitative methods. Epidemiologists tally specific data in order to statistically analyze and present disease patterns through char ts, gra phs, or tables. Epidemiologists examine biological factors as well as social factors with social factors feed ing into a biologica l model (1994:3). Humans become "hosts" and "vectors of disease The homes in which they live become "environments In contrast, while researching with medical anthropology, the biological factors usually feed into a social
! 7 mo del M edical anthropology after all, is anthropology. Anthropology, in an oversimplified definition, is the study of humans. As "a uniquely comparative and holistic science," it offers an exploration of "t he whole of the human condition: past, present, and future; biology, society, language, and culture" ( Kottak 2008:2). Medical anthropology then moves the study of humans away from the idea that they are organisms to be entered into a data set. This becomes clearer with the first part of anthropologist Donald Joralemon's definition of medical anthr opology as a field that studies "cultural premises, which are often times implicit and difficult for the insider to recognize, [that] shape the health related knowledge and healing practices of every society (2010:11) The HIV/AIDS epi demic is one of the most popular subjects to study among today's medical anthropologists. However, this was not always the case : "F or the first few years of the pandemic, only a handful of anthropologists were active in AIDS r esearch" (Bolton 1996:156). With few publications on the topic, "like many other disciplines, anthropology largely failed to distinguish itself in its initial responses to the HIV/AIDS epidemics" (Parker 2001:163). However, America n medical anthropology' s earlier in studies of HIV/AIDS focus ed on behavioral risks and their effects on people in the United States and though not prolific, still made important contributions (e.g. Feldman 1985 ) According to the AARG, American medical anthropology's first co ntribution to HIV/AIDS literature was a 1985 article by Douglas Feldman in Human Organization entitled "Social Change and AIDS" (2012). The article presented research suggesting that sexual patterns among gay and bisexual men in places where the virus had a stronghold, such as New York City had shifted (Feldman 1985). Proceeding a rticles in the mid 1980s about HIV/AIDS were infrequently published as anthropologists
! 8 researching the topic did so "largely on the basis of their own individual research initia tives rather than as part of a formal or organized research response" (Parker 2001:163). During this period HIV/AIDS was considered to be a threat limited to a few groups. In 1983, the Centers for Disease Control (CDC) infamously narrowed in on four sp ecific populations as the primary risk groups for HIV/AIDS which became known as the Four H Club: Haitians, homosexuals, hemophiliacs, and heroin user s (Farmer 2006:211;Gallo et al. 1984:500;Gallo 2006). HIV/AIDS became so closely associated with these gr oups that the CDC had to tell physicians that although "only a small percentage of cases have none of the identified risk factorsphysicians should report cases regardless of these factors" (CDC 1982). Joralemon explains tha t HIV/AIDS did not gain popular ity as a topic for academic study until "it was clear that the disease would not be confined to discrete segments of the population" (2 010:132). In fact it was not until 1987 that the Society for Medical Anthropology (SMA), a section of the American Anthr opological Association (AAA), created the AIDS and Anthropology Research Group (AARG) sub unit (AARG 2012), reflecting the topic's increased popularity. In other words, a correlation exists between when anthropologists decided to study HIV/AIDS and when i t became apparent that the impact of HIV/AIDS went beyo nd certain minority populations. Most anthropologists interested in the newly popular topic of HIV/AIDS continued to publish on the topic of behavioral risk into the 1990s (e.g. Pivnick et al. 1991 ). However, in the late nineties the popular topic shifted to the cultural meanings that HIV/AIDS had taken on in different societies (e.g. Ratliff 1999 ). At the same time
! 9 the structural factors of societies that lead to people contracting HIV/AIDS was beg inning to be studied (Farmer 1992 ;Singer et al 1990). Today, most anthropologists working in the field of HIV/AIDS research are also applied anthropologists. This means that they try to bring anthropological theory in to praxis by using their findings an d making recommendations that attempt to improve the outcome of disease and experience of illnes s for PLWHA Anthropologist Patricia Whelehan elucidates: Applied medical anthropologists working in HIV/AIDS can be cultural liaisons between individuals and groups affected by the epidemic and local, regional, national, or international government agencies such as hospitals, clinics, and AIDS services organizations. These anthropologists may act as interpreters of cultural beliefs and practices by various ag encies. Medical and applied anthropologists have experience with identifying and understanding the values and beliefs that underlie individual, group, and societal norms and behaviors. (2009:6) In this thesis, I examine the beliefs of people in South Ca rolina about HIV/AIDS and analyze them with a theoretical perspective that applied anthropologists sometimes utilize: structural violence. Structural Violence In the fol lowing chapters, I use the lens of structural violence analyze issues of stigma and o ther ing of PLWHA in South Carolina. Anthropologist Paul Farmer e xplains structural violence as a broad rubric that includes a host of offensives against human dignity: extreme and relative poverty, social inequalities, ranging from racism to gender ineq uality, and the more spectacular forms of violence that are uncontestedly human
! 10 rights abuses (2005:8) 2 In other words, structural violence includes explicit acts of violence such as t orture, assault, or killing. At the same time, it is not limited to these "obvious" forms of violence It also includes the more implicit elements of society that produce inequalities and reduce an individual's quality of life. Paul Farmer goes on to say, "acts of structural violence are perpetuated, usually by the stro ng against the weak, in complex social fields" (2005:9). I argue that this includes the stigma and othering of PLWHA. The connection of HIV/AIDS to certain groups has, in large part, driv en the structural violence from which many PLWHA in South Carolina still suffer. A few example s of structural violence have already been laid out from the doctor's insights of the "bigger story" of HIV/AIDS in South Carolina. It can also be witnessed in the erotophobia, homophobia, and misogyny that halt the distributio n of tools of prevention; in the poverty of the teenage mothers; and in the sexism that exists in doctor patient relationships. Violence is not only carried out against PLWHA by the communities in which they live, but also by the researchers who study the m. Structural violence is often so pervasive that the people outside of a community (whether it be a town or a research community) do not even realize the viol ence in their actions. Farmer states that "a set of historically given, and often enough, econ omically driven conditions again, here termed structural violence' guarantee that violent acts will ensue" (2005:9). While economics often drive structural violence, a theme that will !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!! 2 The concept of structural violence here does not have a particularly refined definition in order to be inclusive of the roots of human suffering and their subsequent symptoms.
! 11 recur in the upcoming chapter s of this thesis, statistical reporting c an itself create "a violence of numbers" (Casper and Moore 2009). Numbers are highly valued in American society. The question that pe opl e asked me repeatedly emphasizes this notion: Why was I studying medical anthropology versus epidemiology? It is ofte n implied that e pidemiology has number s, epidemiological studies are more objective, which means that more people will read them and believe them to be true Qualitative methods are methods of the "soft sciences," less likely to be believed that the quant itative methods of the "hard sciences." This assumption obviously ignores how statistics can and have been used to legit i mize weak ar guments (Best 2001;Huff 1993). Statistics often conceal as much as they reveal. Numbers are important in the field of HI V/AIDS. Collections of quantitative data give the powers that control funding the ability to know where it is needed most. However, the problem is that statistics have become the main method of de scribing the lives of PLWHA. Casper and Moore state that with surveillance comes [the] danger forbodies [to be] caught up in silent, secretive aggregates" (2009:12). P eople often talk about PLWHA's lives and deaths as part of statistic on a chart. They lose their identities as full human beings with lives and with stories. Instead, they get boiled down as a demograp hic or risk group to be tallied and charted. Their names blen d into a numerical percentage. The use of numbers in this way become s and drives structural violence. It results in the loss of pe rsonhood to HIV/AIDS, which transforms one from a human into a tally in an epidemiologist's data set. The loss of humanity to numbers can also result in a loss of empathy on the part of others. It's harder to
! 12 empathize wi th a tally than a human being. T he human with HIV/AIDS becomes "othered" in her or his numerical state. Medical sociologists Moore and Casper talk about using an "ocular ethic" to shift and refocus the way that marginalized communities, including people with certain diseases, are viewed and discussed. As they point out : By focusing, we mean the process of drawing our attention and analytical gaze to the often marginalized bodies, individuals, and groups in social life. While we are attentive to the biopolitical mechanisms that erase the ir voices a nd bodies, we also argue thatpeople with diseases must be seen in situ and on their own terms. The act of seeing them, of focusing on them in a critical way, is an ethical responsibility. The ocular ethic uses techniques of magnification, inc luding ethnography, to reveal, resituate, and recuperate. (2009:15) Here the value of medical anthropology and medical sociology becomes evident. It can be used as a tool to reanimate the numbers into human beings through ethnographic research. Social s cientists have the ability to focus on a macro, structural level, while also having the ability to focus in on micro level experiences down to the individual human level. 3 Both epidemiology and medical anthropology make necessary contributions to the st udies of disease and illness While there have been calls for epidemiology and anthropology to work together in a more interdisciplinary way, this has yet to truly happen (Hubert 1985; Inhorn 1995; Trostle and Sommerfeld). On the one hand, as the "hard s cience" that i s taken more seriously, epidemiology must strive to include more data from the "soft sciences." Medical anthropology, on the other hand, must work !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!! 3 It is not entirely fair to lump all epidemiologists together as purely pos itivistic reductionists who do not take the humanity of their numbers into consideration (Trostle and Summerfeld 1996). There have been epidemiologists who have worked with and within the social sciences to create a more holistic view (Hubert 1985:169). However, this is more of an exception to the rule because, again, numbers and "hard science" are considered to be more legitimate.
! 13 against the urge to simply brush epidemiology off as an impermeable field from wh ich it must w ork separately. It must continue to push for the value of its own discipline, but at the same time must explore the gains that could be mad e from interdisciplinary work. What does nuancing quantitative data with qualitative data have to do with HIV/AIDS structural violence, stigma, and othering in South Carolina? Well, PLWHA under surveillance in South Carolina are be ing "caught up in silent, secretive aggregates" ( Casper and Moore 2009:12). Silence breeds ignorance and ignorance often breeds stigma wh en it comes to disease. So, the staggering numbers 4 that have captured the quantitative side of PLWHA and dying from HIV/AIDS need further qualitative exploration. I n the time that this has been written, it has not received much nation al press. Today, H IV/AIDS is alive and surging in South Carolina. Meanwhile, instead of researching this topic in depth, publications such as the Ne w England Journal of Medicine are wondering if the upcoming decade is the "Beginning of the End of AIDS" (Havlir and Beyrer 2 012). Of course, the problem goes beyond the silencing effect of statistics. Structural violence in the forms of homophobia, sexism, poverty, classism, and m ore attached to HIV/AIDS are discussed throughout the following chapters This thesis is largely based on ethnographic research carried out at an HIV/AIDS prevention and HIV/AIDS related services center, which I call the Agency 5 The Agency serves several counties with varying demographics from mostly one region of South Carolina. The following ch apters are a combination of data from the field site with historical research. The first chapter provides a brief history of HIV/AIDS both !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!! 4 See Appendix 5 The names of places and people have been changed in order to protect the identities of those involved in thi s research.
! 14 nationally and in South Carolina. The chapter uses not only written history, but also an oral history collected dur ing fieldwork. The h istory told looks into how the roles of stigma, other ing, and structural violence played in reporting about HIV/AIDS and the care of PLWHA. The second chapter explores the Agency 's prevention services and how it faces the challenge s of preventing HIV/AIDS in an environment of stigma, othering, and structural violence in South Carolina The third chapter explores the Agency's AIDS related services (case management) and how stigma, othering, and structural violence affect their care and interactions with PLWHA. The final chapter consists of concluding thoughts, including the connections among the HIV/AIDS epidemic and stigma, othering, and structural violence internationally.
! 15 Chapter 1 : A Hidden Hi story of HIV /AIDS The h istory of HIV/AIDS in South Carolina emerged and continues to grow from bleak period in the United State's social, political, and epidemiological history. Like any other epidemic, HIV/AIDS not only caused a medical crisis but also revealed social fracture s HIV/AIDS showed those who m the United States considered to be a part of the dominant "general" society and those whom they considered to be the marginalized "others." In the beginning of the epidemic, no one knew what caused AIDS. In June 1981, the C enters for Disease Control ( CDC ) reported that a few gay men in Los Angeles had suffered and died from rare cancers and infections ( 1981: 1). About a m onth later the CDC reported additional, similar occurrences in both New York and California ( 1981:305 30 8). Due to the fact that all of the cases involved gay men, the CDC began to classify being gay as the risk factor for contracting this mysterious illness and set out to investigate. In "Understanding AIDS: Historical Interpretations and Limits of Biomed ical Individualism," Elizabeth Fee and Nancy Krieger explain: E pidemiologists, the first scientists to lay claim to understanding the mysterious new ailment, were struck by its seemingly exotic preference for young, homosexual men; they therefore searched for causes in the behaviors or "life styles" common to gay men. In the process, they looked for risk factors prevalent in this "risk group" and indicted life in the fast lane, including "promiscuity," poppers" (amyl nitrate), and anal sex. (1993:1478) "Exoticizing" AIDS led to a reinforced othering of gay people in an already homophobic American society. This, in part, fortified structural violence against them, and made it difficult to seek and receive treatment for AIDS.
! 16 On July 3, 1981, the New Yo rk Times published an article titled "Rare Cancer Seen in 41 Homosexuals" by Lawrence K. Altman, which revealed the CDC's recent findings to a w ider audience. In 1982, as the cases increased, the press revealed that American scientists called the mysterio us illness GRID, which stood for gay related immune deficiency (Altman 1982 ). Later that year, scientists realized that GRID went beyond the gay male community and changed its name to acquired immunodeficiency syndrome ( AIDS ) (CDC 1982;Kher 2003 ). This began a slight shift towards the idea that AIDS was not just a syndrome suffered by gay males However, in many ways, the gay white ma n as the face of AIDS stuck in epidemiological and cultural imaginations. While the gay community suffered massive lo sses from AIDS, other communi ties also suffered losses that often went ignored Fee and Krieger explain that "fascinated by the details of gay male sexual behavior and culture, researchers first ignored the cases of AIDS that did not fit the gay plague mo del, such as those among women and users of injection drugsand those stricken who denied homosexual contact were often assumed to be lying (1993:1478). The inclusion and exclusion of certain people living with HIV in the surveillance of AIDS had an impa ct on services received and whose death from AIDS was counted. Although HIV and AIDS are often spoken about together (including throughout this thesis), they are not interchangeable. H IV is a virus that weakens the immune system and leads to AIDS. AIDS is an epidemiological construct. By this, I do not mean that AIDS is not real. AIDS is a sy ndrome, a collection of symptoms that has been given the epidemiological stamp of approval for meaning AIDS. According to AIDS.gov, in the United States, a person w ho is HIV positive and presents with one or more of the
! 17 following opportunistic infections (OI s ) approved by the CDC will be diagnosed with AIDS : Candidiasis of bronchi, trachea, esophagus, or lungs Invasive cervical cancer Coccidioidomycosis Cryptococcosi s Cryptosporidiosis chronic intestinal (greater than 1 month's duration) Cytomegalovirus disease (particularly CMV retinitis) Encephalopathy HIV related Herpes simplex : chronic ulcer(s) (greater than 1 month's duration); or bronchitis, pneumonitis, or es ophagitis Histoplasmosis Isosporiasis chronic intestinal (greater than 1 month's duration) Kaposi's sarcomav Lymphoma multiple forms Mycobacterium avium complex Tuberculosis Pneumocystis carinii pneumonia Pneumonia recurrent Progressive multifocal leuko encephalopathy Salmonella septicemia recurrent Toxoplasmosis of brain Wasting syndrome due to HIV While it may just look like a lo ng list of infections, this list was painstakingly cra fted to give AIDS definition. For example, t he second infection on the list, invasive cervical cancer was only added after a lengthy struggle This OI specifically de als with female bodie d people, and the idea that women were at any risk of AIDS was explicitly downplayed into the early 1990s (Fee and Krieger 1991;Schulman 2003). As Brett C. Stockdill explains in Activism Against AIDS: At the Intersections of Sexuality, Race, Gender, and Class : The social construction of AIDS as a gay male disease coupled with sexism in the government, the medical establishment, and the lar ger society served to put women at risk for HIV infection and led to shorter survival times after diagnosisDespite the fact that there were women dying of AIDS in the United States in the early 1980s, there was a dearth
! 18 of medical research on AIDS among w omen throughout the 1980s and well into the 1990s. As a result, there were few resources available to women, particularly in the 1980s. Women found it difficult to gain access to clinical drug trials and AIDS related health care in general. (2003:7) In the late 1980s, activists fought to incl ude women specific conditions on the official list of OIs (Holmberg 2007:52). Cases among wo men often went undiagnosed because the symptomology of AIDS in women is not the same as that in men. During this struggle, mainstream epidemiology refused to add women specifi c conditions to the list of OIs. The medical community claims to be positivistic and abov e cultural influence. However the medical community is made up of people who are influenced by their cultures. This influence informs how the medical community constructs illness: "Heirs of an ancient medical legacy of semantic and gendered imperialism, health experts acquire special license in an epidemic to define and categorize, codify and regulate, and contai n and silence the disease d others whom they diagnose, treat and study [emphasis added]" (Treichler 1999:45). This "special license" silenced the experiences of women with AIDS and condemned them to uncounted deaths. In 1993, the CDC officially updated th e list of OIs for the first time in six years which included adding invasive cervical cancer (CDC 1992). While activists had a longer list of gender spe cific infections to include, this was a feat as it was the first time that one had been included at al l (Holmberg 2008 :52). As recently a s 2006, an article questioning the validity of adding and keeping cervical cancer as a CDC certified OI was published (Bower et al. 2006). The inclusion of women in the discussion of HIV/AIDS continues to be a struggle.
! 19 The Emergence of HIV/AIDS in South Carolina Although the focus was on the major American cities during the beginning of the AIDS crisis, cases started emerging in rural areas around the same time There are few published sources that document the histo ry of the emergence of HIV/AIDS in South Carolina. The most comprehensive source to the date of this writing is Andrew J. Skerritt's Ashamed to Die: Silence, Denial, and the AIDS Epidemic in the South (2011) 6 Skerritt lays out the history of HIV/AIDS i n South Carolina starting with the doctors who were involved in the early stages and South Carolina's so called "Patient Zero." A bout a year after the CDC's reports about the new epidemic emerged, the first cases of AIDS began to a rise in South Carolina. In May of 1982 in Charleston, South Carolina 7 a family physician called Dr. Robert Ball Jr., an infectious disease specialist for a consult on a bafflingly sick patient Dr. Ball drove to the hospital and examined the patient who presented as followi ng: [The] patientlooked to be in his late teens or early twenties For several weeks the patient had been suffering from high fever and swollen lymph nodes. A chicken pox like rash covered his entire body. Lesions pockmarked his frame, with open raw sor e s draining clear fluid. Herpes like lesions covered his genitals and perineumThe man had thrush, a yeast infection of the mouth that doctors would later associate closely with being HIV positive. The young man's swollen lymph nodes signaled trouble. H is herpes clearly had been contracted sexually...His health was deteriorating rapidly. (2011:62) Dr. Ball says, "It was the worst case of genital herpes I had ever seen. Normally, genital h erpes doesn't spread throughout your body. In his case, it did (2011:62). !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!! 6 Andrew J. Skerritt, a journalist, wrote Ashamed to Die for popular publication. As a result, the book lacks critical theory and the benefit of a solid peer review. However, the author's skills as an interviewer and ability to piece togeth er a story fills in the blanks of a part of South Carolina epidemiological history. 7 As a port city and a major tourist attraction, Charleston is one of the wealthiest cities in South Carolina. It is also a hub of medical research as the home of the Me dical University of South Carolina.
! 20 As well as being a private physician, Dr. Ball was also a professor at the Medical Univers ity of South Carolina. This has a couple of impli cations. First, as a doctor who trained other doctors, he stayed up to date on medical news and rep orts from the CDC. He was a well known diagnostician. His accomplishments included being the first physician in the state of South Carolina to diagnose Legionnaire's disease in a patient, and one of the first to diagnose toxic shock syndrome. So, when D r. Ball walked into see the patient, h e knew about GRID (which would be called AIDS in a few months) and its symptoms. He was meticulous about his diagnosis of the young man, who became known as South Carolina's patient no. 1 When Dr. Ball finally diagn osed the patient and sent the information to the CDC, it had been a full week since the first examination. Second, Dr. Ball was able to rapidly send off and recei ve results from tests for the patient. In the era of rapid HIV testing this may seem insigni ficant. However, this was a time before such tests. As m ost of the state was rural and lacked su ch resources, the significance becomes clearer. Dr. Ball treated the patient for H erpes With a chance to heal, the young man's sores and thrush cleared. With a confirmed case of AIDS (which it was then called at that point), the CDC and private labs wanted the patient's blood. After givin g consent, the young man gave a pint of his blood every few months for a nominal fee at the bequest of the CDC and priv ate labs. This blood was used a s a positive control against which other suspected cases of HIV were tested All of t his begs the following questions: Would patient no. 1 have been diagnosed in another, poorer part of the state? W as there potentially a di fferent patient zero, hidden from sight due to lack of resources and the structural violence of poverty? Would patient
! 21 no. 1 have simply died somewhere else in South Carolina ? In "The Emerging Epidemiology of Rural AIDS," a key article from 1993 for unde rstanding HIV/AIDS in mostly rural South Carolina Dav id E. Berry questions whether access to varying healthcare resources affects reporting (301). He also talks about how the number of new cases of AIDS in rural settings is proportional to th at in cities yet goes unnoticed : Historically, the AIDS in rural areas has been overshadowed by the number of AIDS cases in metropolitan areas. However, the epidemic continues to remain dynamic, and rural areas require immediate attention The rapid rate of increase in nonmetropolitan areas which is even greater than the rate of increase in metropolitan areas with 50,000 to 500,000 population and almost equal to that of the largest metropolitan areas. The total case number is small at present. (293) Often, t he o nly stories collected from healthcare providers involved in the early part of the HIV/AIDS epidemic are from those who made "first" discoveries. However, as previously stated, individuals who made those discoveries often lived in areas that allowed them a ccess to resources that, while not eliminating it reduced the sting of structural violence. Caretakers coordinators, and activists of and for marginalized communities rarely have a strong voice in the construction of the history of HIV/AIDS. This is a mistake as they are often at the epicenter of caring for those who suffer and have suffered the greatest from structural violence. South Carolina was not one of the major areas that received attention early in the HIV/AID S epidemic. As a result, it is m issing detailed epidemiological historical acco unts that major metropolitan areas have been able to compile. In order to fill in these holes, it is important to speak to the people who experienced the history of HIV/AIDS in South Carolina firsthand.
! 22 Ang ela, a prevention services coordinator with the Agency in Penumbratown, SC is one such person The following is a partial transcript of an interview that Angela granted me, which now contributes the history of HIV/AIDS in South Carolina I try to maintai n the integrity of her account s only adding, subtracting and changing a few words for the sake of clarity and to maintain anonymity Angela's Story Kortney: Okay, how did you end up in HIV prevention or STD prevention, and all that you do? Angela: Oh wow. All that I do! !! I have been doing HIV work either in a volunteer or paid role since probably the late 80s. I was employed as a case manager, and that was with [a medical service]. And we started seeing people who were being admitted to the hospit al that had recurrent admits. So, at that point and time, I was doing case management servi ces for folks who were indigent and could not pay, d id not have a pay source for in patient stays So, we had to interview them and determine eligibility. So, us ually if you saw a person, and they had a readmit, you had to reopen the case so that it would follow the same manager. There were only two case manag ers in the office. Most of the admits were just for [a local hospital]. And the other case manager did not like seeing people when they were readmits, that sort of thing. And we would try to see people while they were still in the hospital. So, if you got an application, and they were still in the hospital, you had to go into the room and interview them a nd set up an appointment. They were discharged for follow up and all of that. A lot of times it would have their admission, the reason they were admitted and all of that. GSW, a gunshot wound. Or it might have admitted through the emergency
! 23 room, you know. And sometimes we would see blood and body fluid precautions. That was on the admit form. So, it wouldn't have anything, just blood and body fluid precautions. And [with] those folks, usually there was some type of infection that was mysterious t hat they didn't know how or why they got it. They were suspect for HIV. And the other person would say, I don't want to go! I don't want that! I don't want to go to the hospital! There's too many germs over there! I just said, hell, I don't care. I'm getting paid. This is my job, whatever. It's not like, what am I going to do? I'm only talking to them. So, it ended up that most of the folks that were HIV positive, or had been diagnosed with AIDS ended up on my caseload. So, at that time, that wa s in the late 80s, and I knew nearly nothing about HIV, other than what I had heard on the radio, and on TV. And you saw on the news, these people in New York and California. And I was like, oh, okay. So, to me, it was no big deal. I had a job to do, a nd I was going to do it. Then, once I left there in like 1992 or so, '92 or '93, I was working for a [ family planning/STD prevention] progr am.. And I was actually a maternal/child outreach specialist. I was working with women of childbearing age and a ssisting them with Medicaid applications, and well baby checkups, and family planning, and STD education and STD prevention. And I started volunteering with the Red Cross. Took the Red Cross HIV community educators training, and found that they're saying that HIV is in this population. But looking at stuff, you're seeing this. So, I started doing HIV community education, and became [a prevention specialist]. And when I wanted to take an African American trainer's course, they didn't have anybody that t aught it.
! 24 At that time, there was only one instructor in the state of South Carolina. So, I continued to ask, continued to ask. And actually there was a training, I think that was 1993, '94, and took that training, and I told the person at Red Cross, y ou know, this needs to be something that is readily available. So, if you have an instructor or trainer or training to become available, I would be interested to attend. So, I became a trainer in tha t program. [I] did that for a while. And basically, [the] Red Cross was supposed to set up classes and whatnot for you, and I was not getting referrals from them for community classes or community education. And I thought, well, this [is] affectin g the black community and they're not going to set it u p. S o, I started doing classes and whatnot on my own. And just by word of mouth people knew that I did these talks, and that I did education, and so they thought So, people started coming to me and asking if I would come to this church or come to this commu nity organization, do this. So, basically, I set up the classes on my own. Then in 1995, I started, I sat on a board that was looking to get HIV prevention monies to do some educat ion in the community. And they got funded. The program that I was worki ng for was a grant funded program. And they lost their funding. So, when they lost their funding, I was looking for a job, and the HIV program, early intervention at [ a neighboring county 's substance abuse age ncy] had an opening. I applied and was hired there in 1995. And started to learn HIV prevention with individuals who were high risk. Individuals who had alcohol and drug issues. Started going to the jail, and doing education at the [neighboring county] jail. And also, I have actually done, I wo uld say, prevention education everywhere from the
! 25 jails to street outreach to the church and probably everywhere in between. So, it's kind of been an education of things. I remember in the late 80s, when they had the pink placards that would be on a pat ients door that said blood and body fluid precautions. And they had the stations outside of the patients door where you had to suit up with a cap, and the surgical shoe covers, and gowns, and all of that. I thought, hell, I'm only going to be in there f ifteen, twenty minutes. I'm just talking to somebody. It's not airborne because if it was everybody in the hospital would be infected. I would just go in, hey, how you doing? Do my interview, talk with them, ask if they had questions. People would sa y, oh, I'm not going in that room. You know ? And then, the other thing was that I did not want to just get information that I was being fed. So, I started researching, and looking and trying to get stuff, information on my own as well. So, a lot of the way that I became more informed about HIV, especially early on, was through my own research and readi ng [about HIV/AIDS] Ignoring Prejudice and Comba ting Structural Violence On the one hand, Angela armed herself with information about the HIV/AIDS viru s from th e beginning. On the other, she went into the rooms of patients with AIDS whom she guessed that would not transmit whatever virus they were carrying from casual contact. While just walking into patients' rooms and trying to break stigma, it was a lmost as if she was betting on the fact that they were not contagious. By taking this risk, Angela ignored the prejudice that surrounded the HIV/AIDS patients at the time.
! 26 In the early t he 1990s, the entire United States struggled with the concept of wom en being at risk for HIV/AIDS. Meanwhile, Angela was working with women, usually African American women, and witnessed them falling ill. When Angela wanted to learn and teach community education geared towards African Americans, she ran into problems. T he resources to deal with education and HIV/AIDS in the African American community were basically non existent. She did what she could, taking extra steps to make he rself a resource for education while working for the American Red Cross. However, even af ter taking the time to do so, Angela ran into more problems with the Red Cross refusing to help her set up community specific programming. Without calling it by name, Angela put forth that this was structural violence when she said, "And I thought, well, this is affecting the black community and t hey're not going to set it up." Most discussions about HIV/AIDS in the black community only focus on the ways in which members within that community have failed to properly address HIV/AIDS. The fact that it ha s been a national failure is a scarce ly made point (Hammonds 1987). I n Angela's case, she (as a black American) was unable to provide services to the black community through a mainstream American organization. Instead, she had to go through the black co mmunity in order to share educational information. The idea that the responsibility of caring for black Americans lies solely with black Americans in black organizations and not just Americans in American organizations adds to a sense of othering that for tifies racist structural violence. 8 So, structural violence as related to !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!! 8 This is not meant to suggest that the black community should not take care of its members. However, since black Americans are Americans as well, it would seem that national organizations should also take their health into consideration.
! 27 gender, race has played a role in addressing issues surrounding HIV/AIDS and who counts as bein g significant enough for care Structural Violence in Funding for HIV/AIDS Initiat ives and Programs Although HIV/AIDS officially entered South Carolina 's epidemiological history in the 1980s, the state did not start funding HIV/AIDS initiatives on a state level until the early 2000s (Cooper 2012). In 2006, the only other state funded p revention investment outside of the South Carolina Department of Health and Environmental Control ( SCDHEC ) was created: Project Fostering AIDS Initiatives that Heal better known as Project F.A.I.T.H. (Cooper 2012;Lindley et al. 2010 :13 ). Project F.A.I.T.H ., started by the South Carolina HIV/AIDS Council (SCHAC), created programming and training for churches and faith based organizations (especially those connected to the African American and Latino communities) in South Carolina to spread messages of HIV t esting, prevention, and services. In South Carolina, churches serve as trusted sources of information. So, the members of the SCHAC believed that if they could combine church time with health information that they would be able to effectively provide me ssages about HIV/AIDS effectively. With many people believing that talking about HIV/AIDS and the topics that surround ed it were not appropriate coming from their ministers or anyone else within the walls of the church this proved to be a challenge (Coop er 2012). Many people saw HIV/AIDS as not being their problem, but as the problem of others who engaged in certain kinds of activities. Project F.A.I.T.H. tried to clarify that HIV/AIDS was not a matter of immorality, but rather a virus to which anyone c ould be exposed all while
! 28 talking about ways to prevent contracting HIV. Dr. Andrew Rawls, the former director of the HIV/AIDS division of DHEC explained, In the environment where culturally you can't talk about sex, you can't talk about condoms and prot ection and also a kind of level of denial: "Not my disease, not my problem, I don't have to be worried." So we are trying to put out messages that help African American[s] look at issues of self esteem, issues of resilience in themselves, issues of being able to negotiate with partners around condom use, around sex, and around all of the other socio economic things that come into play (2012) Dr. Bambi Gaddist the director of the SCHAC said in describing the challenges "in Project F.A.I.T.H. we are look in g for the marines [for fighting HIV/AIDS ], if you will. The marines are thos e that understand that this is a problem and they're ti red of the burials and the lies (2012). Unfortunately, those "marines" for the fight against HIV/AIDS through Project F. A.I.T.H. were stopped early in their mission. In 2010, only four years into the initiative, the state of South Carolina cut off fundi ng for Project F.A.I.T.H. Given that this probably was not enough time to get results from an initiative tackling a major health crisis affecting a minority group, it could be suggested that this was an act of structural violence perpetuated by the state as it prevented potential ly life saving information from being distributed to people (the majority of whom were minorities ) who needed it most. This was not the last time that South Carolina's government would reflect structural violence in its policies toward the HIV/AIDS community. In more recent history, it was demonstrated when South Carolina's governor Nikki Haley 9 laid out budget cuts for 2012 2013 (Haley 2012) Clumped together in the healthcare section Governor Haley line item vetoed funding for programs that provided !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!! 9 Nimrata (Nikki) Kaur Randhawa Haley is the first woman and person of color to be elected the governor of South Carolina.
! 29 services for minorities. This included, but was not limited to, a $200,000 cut of the ADAP program 10 a cut of almost half a million dollar from domestic violence services, 11 and a cut of a half million dollars from rural health services. In a blurb following the proposed cuts, the governor stated: I am vetoing each of these earmarks in Section 90 of the Department of Health and Environmental Control's budget. Each of these lines attempts to serve a portion of our population for which we extend our sympathy and encouragement, but nevertheless, it is only a small portion of South Carolina's chronicall y ill or abused. Overall, these special add on lines distract from the agency's broader mission of protecting South Carolina's public health. Each new special interest that wins an earmark takes more of DHEC's attention away from its overall mission. ( Ha ley 2012:16) With this short statement, the governor displayed an ideol ogy of structural violence that classifies certain people's lives as not worth improving or even saving. Although in the end, the state senate overturned her vetoes, this is the hosti le political environment in which people with HIV/AIDS in South Carolina continue to find themselves (Severson 2012). !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!! 10 ADAP stands for AIDS drug assistance program. 11 South Carolina ranks second nationally in the number of deaths among women due to domestic violence. For more, see "When Men Murder Women: An Analysis of Homicide Data: Females Murdered By Males in Single Victim/Single Offenders Incidents" (VPC 2012:5).
! 30 Chapter 2 : Prevention Services The Agency is a n on profit HIV/AIDS services agency that serv es Penumbratown 12 and surrounding count ies After his partner died of AIDS and finding that there were not many services for PLWHA in Penumbratown, an architect left his lucrative job, founded the Agency, and still works there today as its executive director. In this chapter, I focus on th e A gency's prevention services and how the people who run it function in an environment where PLWHA experience the effects of structural violence The only address provided on the Agency's website leads to prevention services. As a result, prevention servi ces provided the initial location and people included in this study. In fact, one would not know that the other services, which are steps away from prevention services, exist. For the most part, this know ledge comes one of two ways: One knows because one works or volunteers within the Agency, or one knows because one has been diagnosed as HIV positive, often at prevention services, and then is referred to the Agency's other services. The Agency is located in the Northside, on the "other side of the tra c ks." A defun ct railroad literally demarcates one part of town from another. Crossing this line means going from an afflue nt downtown to an area of poverty. Stark differences exist between the nearby downtown and the Northside Downtown Penumbratown ha s been crafted to mai ntain a trendy environment where many people stroll along the sidewalks, shopping, dining, and enjoying art and the outdoors Expensive lofts, condominiums, and high rise apartments give those who live within them easy ac cess to the s urrounding area. During the day, downtown Penumbratown bustles with noise and movement. !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!! 12 This is a pseudonym.
! 31 This is not the case in the Northside. Only a few buildings are clearly marked. (I found out later that quite a few of the unmarked buildings belong to the Agency. ) One is a government employment office. There are also a few businesses, includin g a discount liquor store near a soup kitchen. Low income housing with peeling paint and in definite need of repairs are between unmarked buildings. Not many people walk t he streets of the Northside even during the day. Silence marks the environment. Finding the Agency is no easy feat. It can be highly confusing as the Agency runs a thrift store bearing the Agency's name Yet, th is i s a separate building from the A g ency 's health related services The first time that I looked for the Agency, and then again for a second time a few months later, I had to stop in the thrift store for directions. Like most of the buildings in the area, it too opts to be unmarked. Searching for a n unmarked building hidden in a sea of unmarked buildings with no one walking around outside, can be an unsettling feeling. When I found the Agency it was unlike any health related facilit y that I had ever encountered. It seemed an intimidating place from the outside. The dark brick building had nothing but two signs made of printer paper post ed from the inside of its brown tinted windows. One gave the street number. The other gave testing hours, and whether or not testing was available. In most healthcare institutions, one can walk up to a door, and it automatically opens. That is not the case with the Agency's prevention services. The door s remain closed and locked There are only two ways to get into prevention services One, of course is if one has a key. The other is if one rings the doorbell, and a receptionist opens the door.
! 32 The inside is more inviting than the outside. The walls are a combination of bare and paint ed brick. The ceilings are high with visible rafters. The re ception area is split into three sections. One is the main reception area. Carpet in the room is a dark blue, which matches the dark blue of sofas. Bot h have patterns of upholstery made for high traffic areas, the kin d that hides sta ins. Next to the so fas are some health and wellness magazines that can be found in many healthcare providers' offices. This area is where the receptionist /connection to care coordinator Eric, does the initial screening of people who arrive. He asks, "How can we help you?" Some people want to get tested for HIV/AIDS and other STDs/STIs. Some want connection to services, which will be explained in depth later. Some want condoms, and/or information about STDs/STIs. This then leads to the next area, which is the receptionis t's desk. On top o f a medium sized dark wood desk there is a computer, a phone, and a small television facing the main waiting area. Behind the desk, a large donated colorful quilt hangs from a rod against the wall To the left of the desk, an enormous sign advertises for men who have sex with men to get themselves tested, know their statuses, and to get treatment if necessary. The receptionist desk serves three purposes. First, it serves as the connection point between the clients and the prevention c oordinators/counselor s Eri c calls the coordinators/counselor and asks if any of them have availability for a testing. Second, it serves as an area for connection to care. Should clients need a ccess to medical care, Eric connects them from this desk, w hich includes giving out bus pas ses, gas cards, and calling taxis Occasionally, if all o ther scenarios fail and an establish ed relationship
! 33 exists with a client, Eric pulls his keys out of the locked desk drawer, and drives the client to a n appointment h imself Third, and finally, Eric hands out pre packaged condom packets to people who reque st them, or after clients return from testing. He also gives them brochures a bout STIs or STDs which are l ocated behind and on his desk. In other words, Eric's de sk functions as either the first and final sto p for services for some clients or the link to different services for others. The last section of the reception are a is right in front of a window and consists of a conference table. This area is sometimes u sed to set up for events or put together co ndom packets. The area is also used sometimes to look out the window to see who is coming to the door, or to check on the happe nings outside. If the clients want to be connected to a prevention counselor, typical ly during testing hours, the clients are lead down a hallway to the testing room. On the sides of the hallway are four offices for fiv e testing counselors. Three of the counselors ar e men and two are women. Each of the three men has an individual office The two women counselors share an office, but never at the same time. They have alternating hours that give them individual use of the office. Each male counselor has his name written clearly on a small plaque outside of his door. Only one of the fem ale counselor's names is on a small plaque outside of the shared office 13 Almost at the end of the hall of the counselor's offices are the testing room and the storage room. The testing room is, as its name suggests, where the counselors carry out the tests. After the client receives a test, she or he is sent back to the waiting room to wait for results. In twenty minutes, the results come back and the client is called into the !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!! 13 Although they have seniority over some of the male staff, the women share one of the smallest offices in the entire building, unlike their male counterparts. This suggested a certain level of office place gender inequality.
! 34 testing counselor's office. Here, a cli ent is given their results and tal ks about ris k reduction, safe sex and overall health with the counselor, whether they are positive or negative. If the test results turn out to be positive the counselor gives the client information about links to care, and Eric usually sets up appointm ents for them. At the very end of the hall, there is a conference ro om with a long conference table and a television. In the back of this room, there is another door that leads to the parking lot. The windows in this room are high on the wall, and smal l. It gives the room the appear ance that it is in a basement. The counselors sometimes use thi s area to throw prevention events, which typically involve food, videos, a PowerPoint, and demonstrations. There is a kitc hen area further back, behind which i s the most isolated and hidde n office of them all: that of the founder and the executive director of the entire Agency. For about three non consecutive weeks, I worked as a volunteer at prevention services. I worked at the front desk, did basic preparati on of data to be sent to outside agencies, and helped out with events. If Eric was out sick, I be came his temporary substitute. At first, I thought that this job would not be difficult. I answered the door and helped direct clients on a basic level. I packed over a thousand condoms, and handed them out as needed. These ended up seeming like the longest days of fieldwork Eric always made the initial screening process look effortless. He was incredibly efficient and straightforward about asking clien ts what they needed, and directing them. People who came to ask for services usually tended to seem uncomfortab le and/or scared about providing information about why they had come to prevention services. This in tur n made me awkward and inefficient about asking them what they needed.
! 35 Sometimes, people who came to the door were regulars at prevention services and knew that I wasn't someone who regularly worke d there. Usually, they point ed out that I wasn't Eric, and that I was new I typically wasn't e ven able to get the question of how I could help them before they were ask ing to see a coun s elor whom they called by name. Most of the time, I was given other tasks within prevention services. I tallied demographics from self reported surveys from events and programs thrown by the Agency. I also helped prepare before and assist during events, programs, and community meetings. The first programming that I was given permission to attend and asked to help with was SISTA. 14 Angela, the prevention coordinator who provided personal remembrances of the early HIV/AIDS crisis earlier in this thesis, runs SISTA for the A gency Angela i s a middle aged black woman who grew up in South Carolina. Growing up, she went to public school and "always had friends of varyin g ages, and religious ba ckgrounds, and beliefs." When asked how that happened in the segregated era of South Carolina, she said that she had no clue. As a child, she was raised as a Baptist and she stayed a Baptist until 2005. Angela said that she had always been uneasy with the church, but that year she decided to do something about it. She went on a New Age "soul adventure" in Arizona When she told her friends and family, they thought that she was go ing to "a T.D. Jakes 15 conference or something. When Angela returned, she became a Unitarian Universalist vegan with no tolerance for intolerance against the beliefs of others. Angela came to the Agency in 2008 after a grant for HIV/AIDS prevention at the substance abuse agency where she previously wo rked was cut. As a coordina tor, Angela !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!! 14 The Agency received a grant to run an intervention program created by the Centers for Disease Control (CDC) called SISTA, which stands for Sisters Informing Sisters about AIDS. 15 T.D. Jakes is a Christian author, producer, televangelist based out of a mega church in Texas.
! 36 carri es out many roles at the Agency She provides STD prevention and risk reduction education; HIV, hepatitis B and C screenings, and syphilis screenings; family planning education; and HIV counseling. She said th at she's carried out "prevention education from the jails to street outreach to the church and probably everywhere in between." She works most with black clients and has a special fo cus on black women. SISTA: Culturally Specific Feminism SISTA was one of the programs that Angela ran as part of her focus on black women. The CDC created SISTA as what Angela said is called an "effective education curricula" to provide p revention education culturally tailored to reach black women. 16 When we reach ed a neig hboring county where the SISTA program had been running s he gave me a small tour as she drove. Angela explained that the area was mostly poor. There had been small businesses in the p ast, but most of them had shut down. She pointed out check cashing st ores that had recently start ed popping up around every corner. As we continued, she pointed out what had previously been neighborhood schools. One had been converted into a child development center. Angela seemed upset as she proceeded to explain how t his had bee n a loss for the neighborhood. Shutting the school s down meant that the k ids had to be bused miles away to other schools This meant that during the school year children including small children had to be put on buses early in the morning wh en it was still dark outside to get to school. Even more disastrous, she explained, were the summers without the schools. In neighborhoods !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!! 16 For more about SISTA and similar programs the CDC created for HIV/AIDS prevention in black American women, see "Enhancing Adoption of Evidence Based HIV Interventions: Promotion of a Suite of HIV Prevention Interventions for African American Women" (2006).
! 37 suffering from pove rty, free and reduced lunch programs provide children in impoverished wi th their only meal of th e day. During the summer, these programs still run in order to continue to provide these children with free and reduced lunches. However, school buses do not run during the summer. Therefore, the children who would be receiving their one free meal a day providing them with necessary nutrition were unable to do so. We finally reached the community center run by a housing authority, where SISTA had be en held over the past few weeks. Angela intr oduced me to her another staff member of the Agency, Monica who co led the SISTA meetings. A team of two women run each SISTA program peer led, which is broken into five two hour sessions. The attendees were a mostly self selected group, although the housing authority managers had referred a few of them to the program This was the fifth and fi nal session. Inside, we set up. Monica took out a figurine of a smiling black wo man with an afro and placed it on the table. Angela pulled out food and placed it on a windowsill. I organized handouts. The women star ted coming in from the parking lot. Angela introduced me to them a s a volunteer with the Agency and a college student writing her thesis about HIV/AIDS in South Carolina. An older women laughed, and said that I did not look old enough to be a college stud ent. One of the women asked why I chose HIV/AIDS as my thesis topic. After I gave her brief explanation, she asked, with sincerity, "And your parents are letting you study this?" Four female attendees in total ended up showing up for the session. Accor ding to Angela, the group had started off as thirteen women However, she explained, these were women who had major responsibilities outside of SISTA sessions, including children for
! 38 which they had no alternative childcare. That session's lesson was about how to be assertive in negotiating before, during, and after sex. This meant focusing mainly on how to negotiate condom use and what it meant to be able to negotiate. First, she asked the women to list reasons that men gave as to why they could not use condoms and instructed me to write them down One of the older women again wanted to know how old I was before we proceeded. I assured her that I was a college age student, and as soon as I did she went first. I wrote down the responses on poster paper situated at the front of the room, with bullet points: I'm allergic to condoms They never fit right It doesn't feel the same You're on the pill, right? If we trust each other, then we don' t need one. We don't have an y, and I'm not going to run ou t and get some! When they reached the final one Angela stopped, and told the group that that was why it was important to always hav e their own supply of condoms. She also gave ways to combat all of the other excuses. Angela then explained that being as sertive in sexual situations made a woman neither "bitchy" nor "unfeminine." She told them that they had the right to sa y yes or no at any point. She also explained that they had to practice "behavioral self management" in order to prot ect themselves fr om STDs/STIs. Monica a nd Angela led activities in which they taught the women steps of how to negotiate for and use condoms. At the end
! 39 of this activity, Monica and Angela handed out SI STA participation certificates and said goodbye to the women. Pov erty and Feminism in HIV/AIDS Prevention In You're the First One I've Told: New Faces of HIV in the South Whetten Goldstein and Nguyen claim that "as we begin the twenty first century, the HIV epidemic is represented by a relatively large and disenfranch ised people" (2002:5). In South Carolina, th is was truly the case, which indicates why people who work in prevention like Angela and Monica focused strongly on poor areas. Focusing on poor areas means not only thinking about HIV/AIDS on a biological leve l, but also consider ing it on a social level. As soon as Angela and I reached the neighborhood where the SISTA meeting was held she started talking about local poverty. For example, she spoke about the lack of food security in the area. Food security i s an important part o f preventing HIV/AIDS. While hunger has often been othered in both popular media and academic settings as a problem in a faraway land, typically Africa, it existed right there in South Carolina. If one experiences the inability to maintain food security, or the consistent in ability to meet daily nutritional requirements one suffers structural violence. This structural violence puts people at risk for contracting HIV/AIDS. When I interviewed Maurice, a prevention coordinator, abou t HIV/AIDS in South Carolina, he spoke about how risk for contracting HIV/AIDS correlates with food insecurity. He explained that contracting HIV/AIDS is not just about one person being
! 40 negative and the other person being positive during sex: "It's not j ust about transmitting to somebody else. It's about the other person. Immune systemtheir mucous membrane. How healthy are those things? Nutrition and all of those things affect somebody's immune system. So, we are always thinking about someone giving something, but if you are more vulnerable" Maurice insisted throughout the entire interview that increasing community health holistically, not just focusing on HIV/AIDS, was the most important tool of prevention. While food security was one structura l condition affecting the transmission of HIV/AIDS, gender inequality was another significant issue. Angela tried to focus on community health and adjusting mindsets during the SI STA meetings which meant taking on the challenge of combating fairly solid cultural ideas about gender inequality. Angela taught the attendees a culturally adjusted version of feminism. The women in the SISTA group shared how they experienced pressure from partners to not use protection. Angela and Monica had to go through the steps of condom negotiation. They literally had to use the words, "you are not a bitch for wanting to use a condom," in order to explain to women that it was their right to protect themselves. This strongly suggests a solid, structurally defined system of gender roles and gender inequaliti es among w omen who are clients of the Agen cy Through SISTA, Angela sought to improve gender equality in order to improve preventative health. Female empowerment programs exist as the go to method s of combatting HIV/AI DS as tied to structural gender inequalities (i.e.. Long et al. 2009). The issue with these programs, such as SISTA, is that in order for them to work, they require a certain basic level of privilege. As Young et al. state "m ost women's specific
! 41 program sconcentrate their time, money, and effort on only a few of the issues that women face without being able to addres s the whole woman" (2007:142). Even though SISTA was designed to specifically target black women, it did not take into account other aspec ts of the women's lives. For example, s cheduling did not revolve around the availability of childcare, which most women in poor settings were pressed to find. This probably contributed to the dwindling number of participants. Further, n ot physically bri nging the men into the conversation with women is limiting 17 Talking to wom en about men as a concept, no matter how defined, does not tear down structural violence as it relates to gender inequality. Changing structural violence as it relates to gender inequality requires an approach inclusive of both men and women (Cornwall, Edstrm, and Greig 2011:1 18). Telling women that they have the right to use a condom without their partners present is potentially problematic. It ignores that after the women l eave a female empowerment setting, the ability to go back into the real world and negotiate condom use might not be possible because no structural change took place (Newman et al. 2008:835). In "Seeing AIDS," Hammonds posits that "African American women" often lose on the critical insights that their situation brings to bear on this epidemic: that heterosexual relationships have to be reconstructed in the age of AIDS in order for women to r educe their risk" ( 1997:121). I posit that black women cannot be the only ones who stand to recognize the structural violence that works against them. I argue that in order to make significant structural change, black men must do so as well !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!! 17 Maurice ran prevention programs directed to wards men who have sex with women. While I never attended one of these sessions, I was told that these sessions were based more on the graphic nature of STDs/STIs and avoiding them than on the reshaping of structural issues.
! 42 Bl ack men suffer from their own issues of structural violence, which subseque ntly have an impact on women. 18 During SISTA, some women spoke of men who had been incarcerated and had sex with men while in prison found it difficult to do so wi th women after being released. Collins puts forth that "n ew forms of social control, for ex ample, the growth of a prison system that incarcerates large numbers of black men and disciplines them by condoning institutionalized rape, simultaneously raises the rate of infection and suppresses protest (2004:281). The structural violence of the mas s incarceration of black men propagated HIV/AIDS in many other ways as well First, South Carolina tested people as they went into prison for HIV, but not as they exited. 19 Second, South Carolina did not re quire the testing anyone entering or exiting the jail system (Duffus et al. 2009:1026). 20 Third, neither institution allowed condoms to be distributed. As most of prevention coordinators explained to me, prison and jail officials acted as though sex in their institutions did not happen. Testing for HIV/AIDS to segregate those who were positive fr om those who were not was not only futile, but also considered a human rights violation (ACLU and Human Rights Watch 2010). So, for example, a n HIV positive man with a viral load below detectability could en ter the prison. His viral load could increase while incarcerated. He could have unprotected sex with another male inmate, and potentially transmit it. Then, !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!! 18 This structural violence inc luded the mass incarceration of black men, the roots of which could be found in historical racism. For more information, see "From Slavery to Mass Incarceration: Rethinking the Race Question' in the US" (Wacquant 2011:387 402). This is certainly not to say that being imprisoned was a universal experience for black men. However, there is a disproportionately high number of black men in American prisons (Roberts 2004:1272). 19 If an individual entering the system tests positive for HIV/AIDS, they were sent to one of the two segregated state prisons that existed specifically to keep people with HIV/AIDS away from other inmates. 20 Prison was for incarceration that lasted more than a year. Jail was for incarceration that lasted a year or less.
! 43 that other male inmate who might consider himself to be heterosexual could go home to his wife a fter being released. Not knowing that he has the virus, he could unwittingly pass it on to his wife. So, while female empowerment is an important part of prevention, it should be just that: one part. Ladies' Night In: A Message of Prevention to Senior C itizens Later, on the same day as SISTA there was another event a "ladies night in," at another community center. This one was located in Penumbratown The community center threw ladies night in every once in a while. Some of the people in attendance donated food. Others donated prizes which were given to every person in attendance. Others donated services, such as b ringing in their home nail kits and giving manicures. This time, three employees from the Agency, Monica, Angela, and a female case m anager, Jasmine, were in attendance The event was not focusing on the topic of STD/STI prevention. Rather, the community center threw this event as a way to give local women a free way to relax However, the three attended as a way to engage in communi ty outrea ch and to let the women know about the Agency. The majority of the population at the event ended up being over the age of fifty. Bingo was the game of the evening. At one point, Monica gave a speech about the importance of cutting "toxic people" out of one's life. She then nudged Ange la, who seemed reluctant to send out the invitation for an upcoming SISTA program in Penumbratown. Jasmine didn't get up to speak. As we were leaving, Angela apologized to me because she did not know that the even t was going to be like that. She said that she tho ught that the event would have been
! 44 different demographically, and she meant age wise. Monica said that the people that they needed to reach were young women, and women with drug problems. In that enviro nment, Monica explained, in the beginning of the summer, many young women were "to find new summer loves and move in with them." This is why, Angela chimed in, they needed to quickly have a new SISTA program, and squeeze as much information into those ses sions as possible. Apparently, once the women move in with their new boyfriends, they were unlikely to cont inue attending SISTA sessions. Ageism in HIV/AIDS Prevention The staff fro m the Agency believed that their time had been wasted speaking to an old er population. However, w hile HIV/AIDS did not statistically affect elderly communities the most it nevertheless had an effect Ageism makes it nearly impossible for the older population to receive adequate information about how to pro tect oneself again st HIV/AIDS. Information about HIV/AIDS was often far less common knowledge to the older generation than it was to the younger generation. As one middle aged woman told me at the SISTA meeting, her generation did not have to worry about HIV/AIDS in their youth. The STDs that concerned them were syphilis, gonorrhea, and ailments tha t a shot of penicillin cured. Further, a conversation about HIV/AIDS involves a conversation about sex. A conversation about sex among older people is not a conversation that the United States wants to have: "In contemporary Western societies, sex is typically seen as a monopoly of the youngThe idea of geriatric sex may unsettle our stereotypes about the aging process and the appropriate deployment of sexuality" (Gottlieb 2 002:182).
! 45 However, not having this conversation about sexuality among older Americans puts them at risk (Feldman 1994) What may have seemed simply as inappropriate to discuss reveals itself as the structural violence of ageism as it threatens lives. As Matilda White Riley explains in "AIDS and Older People: The Overlook ed Segment of the Population:" Everyone knows that we live in an aging s ocietyWhat no one knows and what few have even cons idered is how AIDS is affectingmillions of middle aged and old er people. It is often assumed that beyond young adulthood AIDS prevention efforts would be wasted. Some even assume that sexual activity stops mid lifeNumbers [of people fifty and older with HIV/AIDS] are steadily increasing and appear likely to explod e in the near future as those already infected, who are growing older year by year, develop AIDS or AIDS related illnesses (1990:3) So, while the contemporary tre nd was to talk mostly to young people about the prevention of HIV/AIDS, the conversation needed to move toward including a larger age bracket. Community Meeting The next event that c ame up focused not on women, but on the effects of HIV/AIDS on the black community as a whole. The organizers, one of which was the Agency, advertised it as a s ort of community meeting. It was held in the same community center as the "ladies night in." The high temperature of that day broke records, and community l eaders quickly filed into the building, sweating in their business attire. I attended this event with Demetrius, another prevention coordinator. Demetrius is a black man in his late twenties who was born and raised in South Carolina Raised in the black Methodist church, Demetrius said that by the age of eight he knew that he was meant to preach. B y the age of fourteen, he started preaching. At
! 46 the age of fifteen, he was ordained, and became an assistant pastor. In his late teens and early twenties, Demetrius served as a praise leader at a mostly white mega church in Penumbratown. He was working his way up slowly but surely within the religious community in the region. Underneath it all, however, Demetrius hi d a secret that threatened to destroy his career in the church: he was gay. Demetrius said that he had known all of his life that he was ga y. After an incident at the mega church, his sexuality, which he said was already vaguely known, was confirmed. First, the church fired him. Then, the church called one of the major radio stations in the region, and told them about the incident. The ra dio station, which maintains a heavy listenership within the black community, reported the incident with Demetrius' name. In an instant Demetrius was "forced out of the closet." He ended up homeless without friends or family. He said, "I lost my home. I was actually making quite a bit of money at the church that I worked at. A nd I lost it all, just due to my sexuality. I mean, my house, my cars, my family. I mean, I lost a lot." His mother heard the report while at a hair dresser and fainted upon h earing it. She would not allow him to live with her, and estranged herself from him for five years. Then one day, Demetrius went to get tested for HIV/AIDS His counselor ended up being Angela After the y started conversing about Demetrius' life, Angel a told him that he needed to go to an event at a local church. She wanted him to meet with Terence, the director of prevention services. He did, and Terence asked D emetrius to work at the Agency. Soon after, he worked to get certified as a counselor, an d became an employee of the Agency.
! 47 As a prevention coordinator at the Agency, his main focus is men who have sex with men (MSM). He leads a black, gay male intervention program equivalent of SISTA called Many Men, Ma ny Voices, also created by the CDC A t these retreats, men discuss homophobia, sexual risk reduction, and methods of STD/STI prevention. He also maintains a presence statewide in online gay sex chat rooms, informing participants of safer sex practices. On the day of the community meeting, Demetrius served as the primary representative of Agency. A shift in my identity occurred that day, and I became considered a part of the Agency. Instead of being introduced as a volunteer, as I had been in previous instances, I started being introduced as the Agency's intern. The meeting room was monochromatic with plastic white tablecloths and plastic chairs. The only elements providing color were the artificial long stem flowers tha t had been placed on the tables and the pictures in the room. These p o rtraits of black families and individuals on porches lined the walls. The meeting consisted of well over a dozen well known, prominent members of the region's black community, including a city council member business owners, and significant senior citizen s who had taken on social causes in retirement. In fact, most of the people in the meeting were older. If one took Demetrius, one other woman, and I out of the equation, the ages of the people in the room ranged from the forties to eighties. First, ever yone made introductions telling everyone their name, the organization or business with which they were affiliated, and why they were there that day. Then, a fter a prayer over the food and the meeting, everyon e settled with th eir plates and presentations began. First, Mr. Williams a founder of a services agency for PLWHA in
! 48 New York City spoke. Mr. Williams grew up in Penumbratown. After he had be en diagnosed with HIV Mr. Williams moved to New York City thinking that he would soon die. After realiz ing that he would survive th e virus, Mr. Williams worked to create an agenc y to provide services for PLWHA and prevention services for people living in several boroughs. He returned to Peumbratown after his contacts in South Carolina implored him to come home and help deal with the spike in local HIV/AIDS cases Mr. Williams started his presentation by asking the room a question: What did everyone think about the recent headlines about the "end of HIV/AIDS?" At first, people were silent. Then one person broke the silence with an answer: "Far off." Then another person said, "It's not here yet." The answers followed this similar stream of thought for a few more answers, until the drug represe ntative in the room answered, "H ope." Mr. Williams stopped the answers there, and said that that was the ans wer for which he was looking. He explained that a lthough obstacles existed in the path toward the end of HIV/AIDS, people should be more hopeful than ever before. Mr. Williams spoke about several complications in dealing with HIV in South Carolina. Mr. Williams first pointed to the "drying up" of funds due to the economic crisis of 2012 He told his audience that the time had come for the black community to "take up the mantle" financially. The second complic ation was dealing with the stigma of HIV as a "gay disease." He wanted to bring the understanding to residents that the majority of n ew cases in the South Carolina we re springing from heterosexual sexual contact. As a result, the third problem, he explai ned, was e ngaging with the community. He suggested that the focus should be moved fr om MSM to heterosexual couples.
! 49 This had two benefits: One it brought the focus to the populations that nee ded more assistance. Second, it would open greater opportuni ties to get participation from the "black church" in prevention education. The black church, he explained, is vital in fighting HIV/AIDS in the black community, as it is a trusted source of information within the black community. Mr. Williams indicated t hat his prevention efforts would not have been as successful in New York without the assistance of the black church. He concluded with the idea that in order to make prevention efforts effective, they needed to be tailored to the culture of South Carolina Mr. Davidson, a representative from a drug company and a PLWHA, went next. He also said that, like Mr. Williams, when first diagnosed, he too thought that he would die. However, more than a decade later, he was still alive, and working to educate peop le about HIV/AIDS in the black community and providing resources. He told the room that, as he had previously stated, he believed that HIV/AIDS would soon be erad icated. Mr. Davidson briefly talked about how his employer helped provide drugs at a reduced cost for PLWHA. Then, he showed a DVD about HIV/AIDS and black women provided by his dr ug company. The video predominantly featured black people who were either famous or somehow prominent. A few unfamiliar faces, which mostly belonged to PLWHA, popped up occasionally. The people in the video talked about how black women were the new face of HIV/AIDS, and how it was time to push past the stigma. The video provided information about how the virus reached black women. It included a discussion of how th e virus found its way to the South. 21 There was a discussion about how black women were !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!! 21 After slave ry, many black people moved to the North, in what is known as the "Great Migration." In the recent economic crisis, some black people are participating in the "Reverse Migration," moving back to the
! 50 socially conservative, and believed that they weren't at risk because they were in monogamous relationships There was also a discussion about how black women are the least likely out of any ethnic minority to date outside of their own race, thereby increasing their chances of being infected due to sexual contact within a smaller social group. When Mr. Davidson ended the video, he asked if there were any questions or comments. All of the comments pertained to how the people in the room knew people in the video, or how they could confirm that what was said in the video was true. All questions pertained to how the attendees could get a copy of the DVD. He said that h e c ould provide copies to everyone if they e mailed him. Then, he swiftly hand ed out cards to each attendee, chatted with them as he did so, and then sat down. Mrs. Jones, a key organizer in that day's event, presented last Employed by a drug and alcoh ol commission that served the region she worked with PLWHA She gave the most impassioned, and shortest, presentation out of the three. Her speech almost sounded like a pl ea for help for PLWHA in South Carolina. She said that although most people choos e to ignore it, HIV/AIDS was a serious problem in South Carolina. She lamented that too many young people were dying, and that not enough was being done : I'm going to keep this brief. I have sat with too many of these kids' families. I have wiped the sw eat from the brow of too many dying young people in the hospital I don't get it. Nobody's screaming! Nobody's hollering! Nobody's lying in the streets [in protest] Come on, it's time to get people past the shame. Behind all of this are faces, names loved ones, familie s. It's time we do something! With that, she concluded and invited attendees to engage in an open dialogue. !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!! South where the cost of living is often cheaper (Curtis 2011). The video suggested that part of this sudden influx of people meant that individuals from the North were bringing HIV to people in the South.
! 51 What happened next was both chaotic and orderly all at once. Everyone in the room wanted a turn in giving their opinion about the situation. Mr. Anderson, who said that he was starting his own HIV/AIDS services agency, complained that there was no outreach to youth. Prepared to take up this part of the "mantle," he looked for funding. Mr. an d Mrs. Wright, owners of a loc al boxing gym, talked about h ow important HIV/AIDS screening and prevention was for their facility. If an athlete turned out to have HIV/AIDS, he or she could not box. So, they wanted to start a "real life" prevention program for the youth in their g ym, and needed money. Most of the athletes trained in their facility were black and H ispanic from "underprivileged backgrounds," and needed "real talk." The conversation s hifted to how those suffering from HIV/AIDS tended to be youth from a lower socioecono mic status (SES) There seemed to be quite a bit of consensus around the concept that these young people typically felt that their families and society did not want them. Mrs. Ellenton, a retired school official and member of a variety of community board s, interjected, "As a result, these kids will sleep with anyone or anything warm enough, and who seems to care even a little bit." People either chuckled, nodded, or both. Mrs. Ellenton quickly apologized for the crassness of the statement, but several i n the room hushed her saying that they knew what she meant. She continued saying that she volunteered through the NAACP (National Association for the Advancement of Colored People) to visit people in prison, bringing them care packages and company. She said that there didn't seem to be any sort prevention efforts there. At this point, Demetrius, who had remained relatively quiet,
! 52 finally spoke up, saying that the Agency sent out coordinators to the prisons on a weekly basis to provide testing and preven tion education. Mrs. Larson, an officia l from the SCDHEC from the state capital spoke last. She suggested that if the people in the room wanted funding th ey should talk to her. She explained that funds from the government had been reduced due to the ec onomic crisis but that there was still some money available for progra mming. She gave out her e mail and told those who wanted to get involved to contact her. She said that more important than money was identifying people within the community who would want to take an active role in the black community in the "fight against HIV/AIDS." SC DHEC provided training opportunities for those who wanted to do so. After the meeting, people surrounded her, not to talk about training, but to ask for funding. In ot her words, instead of rallying around and supporting the functioning services related to HIV/AIDS, each party wanted to start their own program. Mrs. Larson provided Demetrius and I with a ride back to the Agency after the event. When we made it back, sh e came in with us to say hello to the staff and debrief. She sighed that the attendees did not understand that money was "tight," and that there needed to be a focus on wide scale community participation rather than the creation small, individual projects Demetrius just shrugged, and sai d that every service that the peo ple in meeting discussed was provided through the Agency. He said that if people really wanted to help, they would volunteer their time and contribute money to the Agency.
! 53 Race, Classis m, and Linked Fate Politics Race served as the force with which this meeting about HIV/AIDS was brought and held together in two ways. First, the community leaders were there to discuss the increase of HIV/AIDS in the black community and the reasons behin d it. Second, they were there to discuss ways to combat the epidemic. On the one hand, the people in the meeting seemed to consider themselves part of, and thus in solidarity, with the racial group whom they were trying to serve. On the other hand, they seemed to be trying to make a distinction between their own social class and sexual orie ntation and the social class and sexual orientation of those whom they were trying to serve. This meeting served as a perfect example of the complicated nature of the intersection s of oppressi on for those who are considered black, those who are of a low SES, and people whom mainstream American society label as LGBTQ. In an explicit way, race often serves as a means of creating a sense of solidarity among those label ed as black As Cathy J. Cohen explains in The Boundaries of Blackness: AIDS and the Breakdown of Black Politics "a shared history of oppression rooted in ideolo gies and systems of racial hierarchy, has motivated the development among African Americans no t only of a common narrative of exclusion, self reliance, and struggle, but also a shared consciousness and linked fate (10). 22 The idea of linked fate often drives either a type of damage control, a call to action, or both. The black community in South C arolina fairly consistently put the HIV/AIDS epidemic under the "damage control" category. Apparently, this was true for other black !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!! 22 In "Race, Gender, and Linked Fate," Evelyn M. Simien defines linked fates as "a stage of identification that starts with a feeling of closeness to others who identify with the group label and involves the acceptance of the belief that individual life chances are inextricably tied to the group as a whole" (2005:529).
! 54 communities in the United States as well (Collins 2005:280) In a way, this categorization is understandable. Legitimate concerns arose about how discussing the existence and rise of cases of HIV/AIDS within the black community would support racist ideas about an innate moral inferi ority. A s Patricia Hill Collins explains in Black Sexual Politics: African Americans, Gender and the New Racism : A powerful mass media masksstructural barriers by using controlling images of Black masculinity and Black femininity that stigmatize straights with a promiscuous Black hyper heterosexuality and pathologize the sexual practices. Col lectively, these social practices and the ideas that defend them underpin a powerful Black gender ideology that blames Black people forthe promiscuity that catalyzes disease and encourages African Americans to remain silent about their suffering (2005:281 ). So, from a macro level, the meeting that day in South Carolina carried significance. Black lead ers chose not to be silent, but rather to discuss issues surrounding the virus t hat raged through a certain segment of the black community. The significan c e lied in the symbolism of black leaders from South Carolina coming together to talk about the HIV/AIDS crisis, in spite of the stigma that surrounded it. The meeting definitely put forth the message of a linked fate, and consisted of both dama ge control and a call to action. At the same ti me that race creates a sense of oneness implicitly race can reinforce certain inequalities and therefore structural violence. Being black is not a monol ithic experience. O ne black community with one shared consciousn ess, one fate, and one risk of harm simply does not exist (Robinson 2011) The black community, like race itself, is a social construct. However, j ust because it is a social construct that exists in the social imagination does no t mean that it has not ha d real life effects.
! 55 The use of the term black community can yield violence against those who are considered to be minorities (for example, sexual minorities) within this minority group It silences their voices and experiences, while amplifyi ng the v o ices of those who have been deemed as possessing the prope r qualities for representation. As Cohen explains, in actuality, both inside and outside of the black communities, certain segments of the population are privileged with regard to the definitio n of political agendas" (1999:11). Politics, the control and shift ing of power, maintains a role in dictating what is discussed when it comes to the HIV/AIDS epidemic, how it is discussed, and who is allowed to discuss it. The attendees at the meeting ve rbally expressed a desire to help black PLWHA in South Carolina. However, at its core, this meeting created an opportunity for social posturing that not all, but many decided to grasp. Yes, the people there considered themselves to be a pa rt of a larger black community and at least some were PLWHA However, a n attitude of othering the segment of the black community suf fering the most in the epidemic pervaded both implicitly and explicitly. Implicitly, the demographics of the meeting were telling. The people who came to discuss the issues surrounding HIV/AIDS were of higher socioeconomic status. They only attended the meeting as a result of invitation due to affiliation to the federal or local government, a commission, an agency, or a business all affi liations that individuals of lower SES would be unlikely to have. They were business owners, politicians, non profit employees, and board members who knew each other Before the meeting, and even during at some points, they chatted with each other about goi ngs on and their leadership
! 56 in the pan Hellenic council 23 and other parts of black Greek life. The majority of them were of an older age demographic. None of these demographics matched the demographics of the people whom they were there to discuss. T he people who m these discussions we re meant to assist were not privy to this meeting. A result o f this physical separation was a mental othering of black PLWHA. Black PLWHA were seen as culturally different and as having values that did not match those o f the people in the room. Even the sel f identified P LWHA present did not represent the majority of the people for whom they we re attempting to mak e decisions. As one of the two se lf identified PLWHA in the room Mr. Davidson, armed with films featuring r ecognizable important black people and a sincere tone in his presentation was an example Handing out his card with a large print of his company's logo, it might be c oncluded he did not intend to represent black PLWHA Rather, he primarily intended to c onstruct the image that his company cared for black PLWHA. The concl usion c an also be drawn that his presence was primarily an act of public relations, rather than an act of public service. Others' words and participation had more of a feeling of pub lic s ervice, but public relations were never too far away, o ften with oppressive elements. Mr. Williams, the other self identified PLWHA person in the room, pushed for public service. For example, first, he made the point that the black community needs t o financially "take up the mantle" i n the battle against HIV/AIDS. The b lack community consists not only of individuals labeled as black, but also of self identified black institutions that have considerable financ ial and political means. As Collins put s forth: !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!! 23 In this case, the pan Hellenic refers to a council comprised of nine historically black fraternities and sororities.
! 57 While black individuals suffer from limited resources, black elected officials control or at least have significant input into decisions about how resources, albeit dwindling resources, will be allocated in their cities. Further, while individual s in black communities still suffer from marginalization and oppression, organizations like the National Association for the Advancement o f Colored People (NAACP) the Southern Christian Leadership Conference (SCLC), and the National Urban League have been able to gain access to national agencies and policy debates. That claim, however, that African Americans have fewer resources than other groups, while accurate at the individual level, does not appropriately account for the institutional resources control led or accessed by black elected officials and traditional organizations. (1999:33) So, b y making t his statement to the particular audienc e of the meeting Mr. Williams urged the leaders to do something that often gets left out of the dialogue. There are black officials and institutions that have the financial wherewithal to help fund the fight against HIV/AIDS. However, they have yet to make a serious effort to do so. While Mr. Williams urged the leaders to move financially on the issue of HIV/AIDS, h e also urged them to reconstruct the image surrounding it. This reconstruction included the removal of homosexuality particularly MSM, from the dialogue as a way to make the fight against HIV/AIDS more pa lpable to the black community. There were a coupl e of problems with this line of thinking which I should emphasize was not a new one in the local dialogue First, Mr. Williams seemed to not understand that simply removing homosexuality from the conversation probably would not lead to sudden support fro m the black community. 24 The idea that homophobia in the black community was the main problem was a mainstream thought. However, t he !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!! 24 This does not mean that homophobia neither existed nor played a role in the HIV/AIDS epidemic in the black community. For more about the link between homophobia and HIV/AIDS in the black community, see Jeffries et al. Homophobia is Associated with Sexual Behavior that Increases Risk of Acquiring and Transmitting HIV Infection Among Black Men Who Have Sex with Men (2012) and Ward "Homophobia, hypermasculinity, and the US black church" (2006).
! 58 reasons also included a fear of society's further labeling of black sexuality as deviant and diseased, and thus black peo ple as deviant and diseased: While we must be aware of homophobia in black communities as one source of disinformation about AIDS, homophobia alone does not adequately explain the response to AIDS in black communities, nor does it capture the complex rel ationship of African Americans to issues involving and defined by sexuality. Witha history of marginalization in mind, we can begin to understand, yet never condone, how homophobia along with other systems of exclusion might be willingly deployed by blac k elites in an attempt to distance "the community" from blame and stigma and to retain their hopes of legitimacy and full incorporation [into mainstream American society]. (Cohen 1999:34 35) So while homophobia played a role in the discussion in HIV/AIDS, it did not act as a sole problematic force. The second problem included Mr. William's concrete plan of how to shift the focus of HIV/AIDS from being viewed as a "gay disease." The m ajority of his speech consisted of how to reframe HIV/AIDS to talk about the people whom the epidemic statistically affected the most: heterosexual couples. By s uggesting that leaders make adjustments in dialogue as a response to perceived homophobia in the black community, Mr. Williams encouraged the fortification of structura l violence against black LGBTQ people and the silencing of their experiences Choosing not to talk about their experiences would create issues of representation for LGBTQ people, and r epresentation is key to accessing resources. If a group is not percei ved as needing assistance, then they will not receive it. However, with link ed fate politics, sometimes the view exists that certain sub groups within the minority must be sacrificed in order to p rotect the group on the whole. It did not help that a gay sexual
! 59 identity has been seen in black communities as mitigating one's racial identity and deflating one's community standing (Cohen1999:14) 25 Also, focusing mostly on heterosexual couples would be complicated due to variations in sexual orientation. Some people in the black community and other races for that matter, might consider themselves to be heterosexual, while carrying out same sex relationships. Thi s was why official forms from HIV/AIDS agencies did not ask whether or not one identified as g ay. Instead, they asked if one was a man who had sex with men. As Angela, the prevention coordinator, told me, bisexuality among males often gets left out of the equation. However, that does not mean that it doe s not e xist. She said that, often men wh o had sex with men and women would choose to identify with the part of themselves that had sex wit h women, and thus as straight. So, focusing on heterosexual couples seems like it would be an easy route toward fewer complications in getting blac k leaders support. However, t rying to oversimplify the issue threatens to silence a minori ty within a minority, and fail s to recognize the complex nature of black sexual orientation. In fact, t his entire meeting failed to completely recognize the complexities of the lives of the people about whom they spoke. In order to do that, they would have needed involvement from the othered sub groups whom they were trying to aid. !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!! 25 I would argue that the mitigation of race due to sexual orientation occurred in mainstream America, but was reflected in the black community. The media, pollsters, and politicians consistently helped construct the false dichotomy of bei ng black versus being gay. Whenever votes on same sex marriage, for example, arose, these groups always spoke of how the black community did not vote in favor due to certain conservative beliefs and homophobia. This completely erases a queer identity in the black community. It did not take into account that one could be black and LGBTQ. Instead, it helped construct the idea that the ability to be LGBTQ also meant being white.
! 60 Racism and Homophobia Although I have spoken mostly about how HIV/AIDS has an impact on th e minority communities thus far, it is important to recognize that these are not the only communities being affected. During my time in prevention services, I saw many white clients, most of whom seemed to be of a low socioeconomic status, come through th e front door. The blac k image is now being presented as the new face of HIV/AIDS. However, just as this occurred with the gay, white male image in the past, this leaves people with the false impression that they are not vulnerable to contr acting HIV In the case of South Carolina, this often adds to a racist i deology that black people are innately inferior, and thus the only ones truly likely to contract HIV. This topic arose during my interview with one of the prevention coordinators, Klara. Klara, a white woman in her late forties or early fifties, was a part time prevention coordinator with the Agency. She had moved from her home country in Western Europe to South Carolina over a decade before with her husband, who is now her ex husband, for his job In the early 2000s, she started looking for work, but had difficulty due to her immigration status. She met someone who had been volunteering for the Agency, and soon found herself volunteering. After some training courses, the Agency hired her as a f ull time coordinator, but later she opted to reduce her hours to part time. Klara did not like the cultural environment of South Carolina. Even after years of being there, she still experienced culture shock due to South Carolina's conservatism. She sai d that working at the Agency certainly was not what she had envisioned for herself, and neither was living long term in South Carolina. However, it was where her kids were going to school and the environment to which they were accustomed So, to keep her children
! 61 comfortable in the environment to which they were accustomed, she planned to continue living in South Carolina. Klara shared her observations about how people in South Carolina connected race and HIV/AIDS as a way to distance t hemselves from the virus/syndrome The following words belong to Klara and are an excerpt from an interview that she granted me. I have only changed words for the sake of clarity Othering in Racism and Homophobia : Klara's Story Kortney : Do you ever feel that stigma, if it exists, against HIV ever makes your job more difficult? Klara : It was a big change to come from Europe where sexuality isis discussed very openly, and then come here where sexuality is taboo. So, I think that's kind of where the stigma starts If sexuality is a taboo, then HIV is even more of a taboo. And I come from a culture where, you know, sexuality is not a taboo, and HIV is not a taboo, ei ther. O f course, you can't say that there's no stigma there, but there definitely is not as much stigm a as there is over here. So, it's been challenging for me personally because of the cultural difference between Europe and here, and the religious difference between Europe, or at least my country, and here. I wasn't used to that. So, that made my job very hard in the beginning. Now, that I'm more used to it, the stigma still bothers me a lot. There's a lot of judgment, and a lot of misinformation, misconception, a lot of, like I said, judgment, to those who have HIV. And even from educated people, I mean I recently had an instance where a very educated person asked me I was just, you know, talking about work and
! 62 stuff, and he asked me, "Well, you know, how did she get it?" And I'm like, "What do you mean, how did she get it?" "Well, how did [she] get it?" I said, "From sex!" You know, and he was like there had to be something else. You know where people just don't feel that you can get it from sex. You have to get it from doing something bad. You know, you have to do it from prostituting, ha ving a lot of partners, just being irresponsible, you cannot just get it from sex. Because, I think that that's the biggest thing. I think that when [they] allow that, to believe that that they can just get it from sex then they, you know, feel that, oh, wow, it could happen to me, and they don't want to think about that. So, then they just always ask, oh well, was he gay? Always. Or well she must have had a lot of partners. So, oh, yeah, there's a lot of judgment. Oh, yes, it's very hard. K ortney : S o, they just really think they can't ? Klara : They just don't think. They think you have to either shoot drugs. You have to be gay, or you have to have a lot of partners or you have to be black. I mean, they're all racist about it, too. I blame the me dia for that. That they're just, you know, putting out numbers. Black people have these numbers, and white people have these numbers. We don't do that in Europe either. Where you kind of feed into that, oh, you see, blacks have higher numbers. So, the y can get it easier. And that is just something that I do blame the media for because I mean I don't even understand the reasoning behind having different numbers for blacks and whites anyway. I mean, we never had that in Europe, and I come here. Why do I care that blacks vote like this, and whites vote like this? What is the excess of information there?
! 63 I never understood that. But in HIV, I think it has caused more stigma. It's like, oh well, let's add more stigma to black people. Let's add, oh, they can get HIV faster. It has made me, that has actually made me cry before, seeing that on the news. Because I know how the public responds to that. And I have had white people in the jail come to me, and say, well isn't it true that when you're bla ck you can get it faster? And then I would always, I know that that's the media that does that without intention, hopefully and probably. Because I think Americans are very used to showing different numbers for blacks and whites, and I don't understand. I really don't understand that. And I will never understand that because it's just not interesting to me. And Laurence [her boss and the manager of prevention services] always tells me, well, they need that because they need to reach, they know where t o go, they know where to reach and stuff. Oh, yeah, let's go look for the black people, and test them more. Oh, yeah, nice, add to the stigma, you know? I don't like that, and have never. I have always been very very careful about that I graduated p artly on racism, issues of racism and stuff. So, I'm very aware of the psychological effects of certain ways of saying things. I've always been very aware of that. So, I think the media has caused more stigma for black people with HIV because white peop le have another reason to think it's not them, it's the black people, aga in. Othering, Media Portrayals, and HIV/AIDS In this inter view, Klara discussed white individuals who othered HIV/AIDS as a problem belonging to certain risk groups, which inc lude d black people, gay men, drug users, and "promiscuous" individuals. This othering not only has the potential of putting
! 64 people at risk because they think that they are immune to H IV/AIDS due to race, it also potentially adds stigma to groups that already ex perience prejudice. As Lee et al. explain, "In addition, HIV related stigma is heightened because it is layered' upon the stigmas associated with homosexuality, drug use, and sexual promiscuity" ( 2002:310). She also talked about the media highlighting c ertain risk groups as th ose whom the virus affects especially black people While it is true that Americans focused on the plight of HIV/AIDS in relation to gay men in the 1980s (e.g. Altman 1982), this is not the case in today The media often does no t report on black Americans and HIV/AIDS. However, recently, the popular focus for Americans has mainly been HIV/AIDS in Africa, even as the epidemic increasingly threatens the South : "With AIDS seemingly under control and the threat to heterosexual Ameri ca apparently abated, the world's focus shifted belatedly to the emerging pathological cyclone decimating the population of sub Saharan AfricaEven as the world's gaze was turned elsewhere, AIDS spread in the states of the Old Confederacy like kudzu growin g along a country road (Skerritt 2011:8). If the focus is on Africans, then how could this be contributing to the idea that black people are more at risk for contracting HIV/AIDS? In The Trouble d Dream of Genetic Medicine Wailoo and Pembert on explain that phenotypically similar groups of people tend to be conflated and attached to certa in illnesses in a racist manner (2006:9). So, perhaps, due to the fact that most people from Africa are black, they have been conflated wi th black Americans. What is c onsidered to be a problem only of Africans, then becomes considered a problem of black people in general, including black Americans.
! 65 During my time at prevention services, i ssues of structural violence involving gender, race, class, and age arose again and again. Often, it was because those who were trying to help "at risk" populations failed to do the following: First, they often did not look at issues from multiple angles. Instead, they tried to find one way to look at prevention and stick with it. Second, they chose to leave specific sub groups out of the dialogue If the sub groups did not have an urgent need for prevention ser vices, they were not included in the conversation (Although, one might argue that a point of prevention is to keep a s i tuation from getting urgent.) If the sub groups were not believed to have the ability to move the cause of HIV/AIDS prevention forward, then they too were left out. Perhaps, the greatest understanding that can be gathered from this entire chapter about p revention is that in order to decrease structural violence, more voices needed to be included in the dialogue about HIV/AIDS prevention.
! 66 Chapter 3 : AIDS Related Services After three weeks in prevention services Demetrius mentioned that I was researching and interning to the staff at Agency's other service divisions. He asked if anyone could use my volunteer work and would at the same time be willing to show me the goings on of the Age ncy. Almost immediately, a medical case manager in AIDS re lated services requested my assistance. Demetrius asked if I would be willing to help one of the other divisions and volunteer in one of the Agency's other buildings. I told him that I did not know that there were other parts to the Agency other than the one in which we stood. He laughed and said of course. As previously stated, the buildings of the Agency are highly ambiguous with no clear markings. Before Demetrius told and subsequently showed me the buildings aside from prevention services, I had n o idea that they even existed. The only address on the website for the Agency listed prevention services. After I agreed to work in one of the other divisions, Demetrius told me that it was time for a tour of the Agency in its entirety. We left at noon during lunchtime, which meant at the hottest point of the day. Eric laughed as we walked out and said that he would be wa iting for our return in the air conditioning. Once outside, we walked down the sidewalk. The heat absorbed and reflected of f the str eet next to us created highway mirages. Our first stop was the Agency's resale store. I had been to this building accidentally before when getting lost trying to find the Agency. The workers inside had pointed me in the right direction. The inside of the building was square and filled with
! 67 boxes and racks. From the right of the entrance, there was a co unter with a cash register. Posted on the counter was a printed out poster from the film Outrage 26 All the way in the back, a room for storage and s orting was blocked off with a wall that had a long rectangular window cut out in order to give workers in the back the ability to see who entered. Yellow fluorescent light showcased the wares of the store: shoes, clothes, sheets, curtains, a random assort ment of books and videocassettes and more. It had the thick musty, dusty, moldy air of many thrift stores. An older woman in the bac k room came forth and greeted Demetrius and me. She explained that the proceeds of the store go to the Agency. The store also serves as a place for the clients to pick up random items that they may need, such as clothes or bed sheets. After saying goodbye, Demetrius and I left and started walking towards the next location. We went back towards prevention services and then crossed the street. Once on the other side, we walked through overgrown grass and weeds sprinkled with random pieces of trash. We entered a three sided complex, two parallel buildings with one linking the two in the back, which opened into the street. Demetrius took me through each of the buildings, introducing me to people along the way. We first entered the only building clearly marked, which was not directly related to the Agency. Instead, it was the clinic that served the local community, which included many of the Agency's cl ients. The next building was a residence was classified as a housing opportunity for people with AIDS (HOPWA) where we received a short tour 27 The final stop in this tour was the AIDS related services building. There, he !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!! 26 Outrage (2009) is a controversial documentary that allegedly exposes the h ypocrisy of anti gay politicians who have been rumored to also be closeted LGBTQ+ people. 27 The woman who managed the facility explained that most of the people living in the facility did not tell their friends or family that it served as a home for people with AIDS. Instead, many said that it was a
! 68 introduced me to Margaret, the medical case manager who had requested my assistance and with whom I spent most of the remainder of my time at the Agency. Case Management The Agency's case management division provides services for people who hav e been di agnosed with AIDS. This includes but is not limited to, linkage to care, linkage to HOPWA, linkage to medication assistance programs, and n utritional assistance. The building is located on the right side of the compl ex coming in from the street. Like p revention services, i t is not marked wi th anything but the build ing number. However, there the similarities end. Case management looks and feels more like a doctor's office than prevention services. The front door remains unlocked during business hours. Directly opposite of the door is an office window, behind whi ch the office assistants sit. When clients walk into building, t he office assistants generally give out condoms, pass on documents from case managers to clients, or direct the clients to sit in the waiting room until their case manager becomes available. The waiting room located to the right of the window, is painted light beige making it more reminiscent of a cheery doctor's office than the dark bricks of preventio n services. Clients sit in individual chairs as opposed to the shared couches of prevention services. A mounted television features a DVD played on loop that the office assistants choose and control. Under the television, a plastic rack features popular magazines and glossy HIV/AI DS magazines. !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!! rehabilitation facility for people struggling with substance abuse. She said that while she understood that the clients who did so were trying to protect the privacy of their status, this caused two problems. One, people came up to the building asking if it was rehab and how they could get a spot. Two, it placed the status of "drug addict" on the clients within the facility.
! 69 When case managers call clients in from the waiting room, they open a locked door that connects the waiting room with the back offices. Along a narrow hallway behind the door there are offices, storage for case files a full kitchen, and a copy room. The back offices are located on both sides of a long hallway. All nine case managers plus a substance abuse counselor have individual offices The demographics of people who worked in these offices were also different. Seven out of the ni ne case man a gers were white. Three were women, four were men, three of who m were openly gay. The other two case manager s were black and both women one of whom had the position of head case manager. The substance abuse counselor was a Baha' i Iranian Amer ican. All of their offices had art on t he walls and some had plants. S ome spent more time personalizing their offices than others. Margaret had spent time thoughtfully organizing her office. Margaret, a white woman in her fifties, grew up in South Carol ina. She explained to me that a s a child of the South, she had been brought up in the church, but had not agree d with the messages that she heard. So, from Margaret's adolescence into her thirties, Margar et did not consider herself to be a particularly r eligious person. One day, a friend, who happened to be a lesbian, to ld M argaret that she wanted Margaret to come to church with her Margaret hesitated, insisting that she had left t hat life behind. The woman asked her to just give the church a chance a nd Margaret reluctantly agreed. During the first service, the minister preached a sermon of love and acceptance i n a way that Margaret had never heard During childhood, at church and at home, Margaret had heard only ever heard homophobic speeches that damned the LGBTQ+ community to hell. However, this was not the ch urch of Margaret's upbringing, but a Metropolitan
! 70 Community Church (MCC). 28 After that first service, Margaret began attending services regularly and decided to join the church. Soon, Marg aret "heard the calling," went to seminary, earned a master s in theology, an d became a minister, ordained by the MCC. For a short time, s he pastored a small church, but quickly grew weary of church pol itics. She stopped pastoring, began working at hospi tals and hospices, and eventually at the Agency. As a former pastor, Margaret was concerned not only with her clients' physical condition, but also their mental and spirit ua l condition, which she explained d id not mean their religious condition She exp lained that if they wanted her to pray with them, she would, but only if they asked. Ot herwise, it simply meant that she cared about them holistically. Margaret wanted her space to make the clients feel less uncomfortable about the idea that they were en tering a n AIDS related services agency. To her, they were people with HIV/ AIDS and she insisted that the virus/syndrome did not need to d efine who they were as people. Margaret decora ted her windowsill with pieces o f stained glass, tiny fi gurines of fairi es and angels, bright flowers and flowing philodendrons. She closed the blinds to soften t he glare of the Carolina sun, brought in a tall lamp to light the entire room, a s well as a desk lamp. She did not like the idea of using the fluorescent lights in the ceiling because it would give the place a "sickly" look when she wanted it to be a place that encouraged health and h ealing. On the wall, she had two posters, one an interfaith "Golden Rule" poster, which featured different religions' takes on "treat others how you would wanted to be treated." The other was a framed poster of Tupac Shakur with the !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!! 28 The Metropolitan Community Church is a Protestant Christian church that mainly s erves the LGBTQ+ community and has a strong focus on social justice issues, including activism in the fight against HIV/AIDS.
! 71 quote "Only God can judge me" with a rainbow sticker in the shape of a hand making a peace sign on the bottom right of the glass. At case management, I wen t in almost every weekday, greeted the office assistants, and one of them would buzzed me into the office area. I would go straight to Margaret's office. She would hand me a stack of documents that needed to be put in clients' files. In orde r for client s to receive and maintain assistance, they need to fill out pages of paperwork with detailed answers not only about their financial standing, but also about their personal lives. DHEC in South Carolina requires that AIDS services agencies keep records of this documentation both digitally and in physical paper files. For the first week, she sat next to me training me how to file. It almost became something of a chant: "Retrieve the file, take out the old documents, write down any needed numbers, pu t the old in the back, punch a hole in the new papers and put them on top re file ." I worked on the paper files and she worked on the digital files. We took breaks when clients came into her office or if I had questions about research. During one of the bre aks, Margare t granted me an interview, in which she talked about the effects of stigma, especially isolation, on her clients. The following section features the words of Margaret from the transcript of this interview with words added in brackets for the s ake of clarity. Isolation Related to HIV/AIDS : Margaret's Story Kortney : So, do you think that stigma has created a barrier to people coming to get services?
! 72 Margaret : Oh, definitely. Definitely. I mean, even when my clients come in here, they tend to be very nervous for the most part. I had a lady, for the longe st time, probably I would say sixty i sh, black, female, would not come in through our lobby. Always called me when she got to the parking lot, and would come in through our back door, and th en wanted to go back out through our back door. Was scared to death that someone would see her, and tell her family. They don't like coming into our building. It's hard to get people to come in here. They don't like sitting in the lobby. They're worri ed that somebody might walk in. What they tell me is that when they go to the clinic, it's different because it's not just an HIV clinic. It's a clinic, and so they could be there for the common cold. But when they come in our building, they're here jus t for HIV. So, yeah, I think there's stigma in the fact that they don't really want to talk about sex. They will tell me that they're taking their meds, but their labs may show otherwise. So, they're hiding behind all these walls, and it's hard to break those down. K .: How do you think isolation plays a role in the disease and how people manage the disease? M .: Isolation p lays a huge role. Here's why: We talk about diversity in terms of race, gender, or color, whatever. However, their lives are jus t as diverse in their isolation. Because a healthy, and I say that, mentally and emotionally, healthy person comes in. They're fine with taking their meds. They're fine with talking about it. They're family knows. They have a huge support system. You know, everybody in their world know [s] And they're okay with that. But I would say, 80% of our folks are not like that. They hide. They would never tell anybody. They're reluctant to date because they're going to have to disclose that, or they feel that, the honorable ones will. They don't tell their parents. They don't tell their brothers, their sisters.
! 73 We ask for an emergency contact. And when we get that name, and a phone number from them, we also ask, does this person know about your status ? And a lot of times they don't. And they say, don't ever tell. Don't ever tell. If something happens to us, if I fall over in your office with a heart attack, don't tell that person why. And we have people that die in the hospital with HIV/AIDS compl ications that will sign a paper with the doctors and the staff saying you are not allowed to tell. Even after I'm dead, you cannot tell that I had HIV. And if a person requests that, then by law, we're required not to. We cannot disclose that because of HIPAA violation. Even after the person is dead. So, people are very, very isolated. And they do it to themselves. That's why so many times they are lonely. Depression is huge, and that's why we have a mental health counselor. It also triggers substa nce abuse because they're lonely and they drink and they do drugs because they are so unhappy. And they don't have that support system because they are scared to death to tell. They are afraid that their family will throw them out or never speak to them again. People will view them differently, and they talk about that a lot. The fact that if they disclose their status that people treat them differently. And I think that people do. So, when they come in here, then what happens with the case manager, is that we'll plan a slot of time, and that slot of time will just go out the window because they'll get in here. And instead of doing what we want them to do, and update their file, and tell us about where they're working and that sort of thing, they jus t spill. They just want to, they just got to talk about what they're feeling, and why they're sad, and why they feel hopelessness, and they wish they could die, it just all comes out. And
! 74 it comes out because one, if they have any relationship with us at all, they know that they can trust us, and we know all about them. So, we're not going to tell. But if they don't know us, like the first 6 months when I was first getting to know my clients, they would tell me all kind of things because they don't kno w me. And that's why they'll tell you. They don't know you. You don't know them. So, they're talking to a stranger. It's like a confessional in a Catholic church. It's safe be cause who are you going to tell? You're not in their world. So, isolation if I were to name the biggest problem of HIV, it wouldn't be their medications, it wouldn't be their side effects, it would be their isolation. K .: So, okay, so have you seen substance use and abuse ? M : [I have seen clients with drug and alcohol proble ms.] People get fired from their jobs. They can't hold jobs. It affects their body because when you mix alcohol and drugs with HIV meds, you have to remember those HIV meds are the most powerful drugs that a person could put in their body. It's like th e cancer drugs. So, it's having a huge effect on their body, and when they mix it with alcohol and drugs Then, then first thing that happens is that they forget to take their meds, not on time. It affects their sleep. It affects they're meal times bec ause they'll forget to eat or not eat. They're not hungry. And it affects their whole world. So, everything changes. The most healthy of my HIV clients are the ones that stick to a schedule. You know, they eat several meals a day, whether it might be three meals or six meals. But they eat regular meals a day. They get a good sleep. They don't allow a lot of stress in their lives. And they do better. They do. And they're clean. You know they may have a
! 75 drink once in a while, but they're for the m ost part, very clean. And they do better overall than anybody else, yes. And families get frustrated because, from a family's standpoint, the family will go and go and go and go if somebody is an alcoholic or drug user. But there's going to come a poin t where they cut the person off. And then the person may be, may go through, the clinic, may go through treatment programs, and if they continue to use, they're eventually going to be on the streets. And then they have nobody. They don't like being call ed an alcoholic or a drug user. And they'll deny that, but the HIV They would rather keep that secret, take that to the grave. And they'd much rather confess that they have a problem with drugs or alcohol. Isolation and Fear of Stigma With Margaret 's description of denial and isolation among her clients, one can see the contemporary, real world effects of the stigma borne of structural violence that has been discussed thus fa r. People feared being "outted" as having HIV/AIDS. As a result, they too k certain actions to ensure that this would not occur. For example, the anxious client refused to come in through the front door and would call from the parking lot to get in through the back door. The idea of someone she knew seeing her and telling her family made her want to sneak in through a back door. One might think that going to su ch lengths to try to hide one's status is excessive. After all, the unmarked nature of the building does not clearly s pecify what lies within. Therefore, even if some one the woman knew saw her going into the building, how would they know that she received AIDS related services? Why did clients fear people they
! 76 knew see ing them in the lobby? If their acquaintances were there, wouldn't that mean that they were likely b oth receiving AIDS related services? As a result, it seems that both par ties would want to stay silent. What drove this concern? L iving in a conservative, Southern town takes a toll on the psyche An acquaintance finding out a client's positive status, no matter how slim the chance, would probably result in a substantial breach of privacy : "Living in a small community can provide support and comfort, if one is accepted. A small community is also a place where bad news travels quickly" (Whetten Goldstei n and Nguyen 2002:167). Skerritt witnessed a similar pattern of behavior at another AIDS services site in South Carolina and linked it to shame: No medicine can cure the shame that some people still bear from having the disease. Like an unwanted facial t attoo, that stain clings to them, keeps them quiet, always hiding in plain sight. For people with AIDS who live in small, southern, conservative, rural towns, their physical illness is only half their battle. Some patients use the back door of the Christ opher Clinic [an AIDS clinic in Rock Hill, SC] to avoid being seen in the parking lot or lobby. (2011:273) For some clients, perhaps shame drove them to keep their status a secret from those around them. Perhaps, fear of discrimination drove them to do so. Most likely, in my opinion, the reason could be found in some combination of both. Nevertheless, the importance of keeping their status private led to severe isolation. Sometimes, the only time that they could reduce their isolation came when they e ntered their case manager's private office. Margaret talk ed about how appointment slots rarely matched the amount of time that cl ient s needed to spend in the office to converse about their lives 29 30 !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!! 29 This reflected Margaret's view that case management needed to deal with clients holistically. Not all case managers had the sa me approach. For instance, one case manager informed me that as someone trained in social work, it was not his place to pry into the personal lives of his clients. Thus, he was straightforward about filling out paperwork and only asked follow up question s as related to it. If clients
! 77 Eve n when discussing what to do in case of death, clien ts ch ose to take their status to the grave, never telling family or friends. The fear of being exposed hung so heavily over their lives that they worried that such a revelation would haunt them beyond the grave. Should they die, the clients probably want ed tears and memories shared at their funeral, not the stigma of the vi rus and gossipy whispers they had eluded in life. They wanted a "good death" versus an "asocial bad death' without kin support" (Seremetakis 1991:101). Dealing with their health as r elated to HIV and trying to keep it all hidden, some clients suffered depression from the shock of the diagnosis and subsequent feelings of isolation When people get the diagnosis of HIV and have yet to receive education about the advances in the treatme nt of the virus, they often think that they are going to advance quickly to end stage AIDS and die (Whetten Goldstein and Nguyen 2002:98). This sometimes results in depression, anxiety, and a sudden and heavy use of subst ances Having a supportive social network, something that most clients lacked, early in an HIV diagnosis has been correlated with positive coping methods (Brooks et al. 1997:18). !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!! started talking about their lives in detail, he would listen, give short responses that related to what the Agency could offer, and then get the paperwork process back on track. He said that following the tenets of social w ork, this allowed his clients "self determination." 30 Every time a client was about to enter Margaret or another case manager's office and I was there, the case manager would explain my presence before they reached the room. They were also asked if they m inded my being there. None of the clients objected. Most of them were curious and asked me questions about my research: "Why would you want to work with the HIV/AIDS population?" "Why would you care?" Did my parents know what you are researching?" Ot hers wanted me to relay their stories in my research. However, I never recorded what they told me. The clients who wanted me to include their stories took notice when I did not write anything down and asked me to do so. I explained to them that, bound b y the ethics of working within what my college's IRB had given me permission to study, I was not allowed to write down how PLWHA in South Carolina felt about their environment in their own words. When I first approached the person in charge of the IRB abo ut carrying out research using clients' perspectives, I was told that it would not be possible. It was explained that this was because I could not ensure undue influence by the services providers on the clients to give me information. However, it turned o ut that clients wanted to tell their stories and for their stories to be heard, with no prompting from case managers. They wanted other people to know what was happening to PLWHA in South Carolina and did not feel that they really had other ways to do so.
! 78 As Margaret explained, in the midst of their feeling of isolation, some clients began regular substance use to deal w ith the pain of everyday life. For mo st of the clients who used substances, it did not have a significant impact on their access to services. However, for services that required dr ug and alcohol screenings, such as housing assistance, being un der the influence meant getting cut off from important services. If clients were told to leave their family's home due to drug use, the Agency could not help them find housing. Margaret ofte n spoke of how the hopelessness that ensued from these situation s often m ade substance abuse worse and turned into a vicious cycle. Sometimes, she seemed sympathetic with their struggle. Other times, she grew frustrated and wondered aloud why they "couldn't get it together." The Clinic After my interview with Marga ret, she asked if I wanted to meet with someone who could give me greater insight into the psychology of clients with HIV/AIDS. After I said yes, she called Noah, who she described as a hippie, free spirit ed psychologist with a ponytail and a big heart who worked alongside the Agency. In two weeks time from the phone call, I had an appointment with Noah. The day of the interview, I went to Margaret's office, worked on a small amount of paperwork, and then walked over to the clinic As soon as I enter ed, I thought that it looked like a government office. I went up to the Plexiglas check in window, behind which were at least five people dressed in scrub s chatting with one another. They all looked in my direction, but no one stopped talking or opened t he window. For some time, they went on talking as though I was not
! 79 there. Finally, I tapped on the window. Still, no one came to the window until the conversation came to a conclusion in a final laugh and waving. Finally, a woman opened the window and before I could get out my purpose for being there, she handed me a form and told me to fil l it out. I smiled and tried to explain that I was there to see Noah for an interview, but as soon as his name came out of my mouth, she interrupted me telling me th at I just needed to take a seat, fill out the paperwork, and shut the window. As soon as she did so she began to talk to another co worker. I knocked on the window again. S he gave me an annoyed glance, waited a moment, and opened it again. I quickly explained that I had an interview with Noah and not an appointment for therapy. Without saying a word to me, she picked up the phone and called Noah's office to confirm that this appointment existed. She hung up, relayed his message that he was running f ifteen minutes behind, and told me that I could wait in the waiting area. I took a seat in one of the chairs, all of which were metal and pushed close together. The waiting area had a surprisingly nice flat screen television. Those sitting in the ro om were offered the entertainment of an episode of Cops from the early 1990s. The episode featured a black pre teen being arrested for selling crack that he kept in a medicine bottle. He repeated over and over that it did not belong to him. The arrestin g offi cer mocked the child for claiming that the drugs that he found on him belonged to someone else. Meanwhile, on a wall nearby, another policeman spoke to a white man in his twenties with glazed eyes and a pink shirt with a popped collar. This young m an, probably there to buy drugs from the child, was not being arrested. Instead, the officer was warning the man to not get mixed up with people like that kid. Just as the blue and
! 80 red lights faded into a shot of the word "Co ps," Noah came out with a smi le and apologized for runnin g late. We entered and sat down in Noah's tidy office. Next to a cushioned chair, positioned opposite to his own, were framed qu otes of Buddha and pictures of himself with his family in the outdoors. Noah was a white man in hi s fifti es who grew up in Georgia Noah also grew up in a conservative Christian church. As an adult, he maintained his religious faith, but rejected ideas about sin and damnation. He became an ordained minister for the Unity church, which he said was "a very open community of faith. Pretty much it's all about love. It's not about judgment, fear, damnation" In 1990, he lived in North Carolina and worked as a chaplain in a hospital. Somehow, he ended up assigned with all of the patients with AIDS. H e said that at first it made him anxious because he did not know what were, and more importantly, what were not modes of transmission. He explained that he used to get nervous when the saliva of an AIDS patient landed on him, especially in his eye, in the course of speech. He ended up getting himself tested and saw what the process was like. This inspired him to start educating himself about HIV/AIDS. He read about it and asked the doctors at the hospital questions. Soon, with the proper education, his anxiety went away. After working at the hospital, he moved to South Carolina and worked for a mental health center until he applied to work at the clinic and was hired. Noah said that about 70% of his clients at the clinic were HIV positive. I asked h im whether MSM found more difficulty with the prejudice against MSM or if they were diagnosed, the stigma of having HIV. He immediately responded that it was more difficult to carry the stigma of being gay. He said that their experiences of homophobia
! 81 w ere "compounded" if they contracted HIV because doing so basically proved that they were engaging in gay sex. This did not mean that clients did not talk to him about the discrimination th at they experienced as PLWHA. In the interview, Noah talked about the isolation that his clients felt and the discrimination that they experienced. This following is a partial transcript from the interview with words only added or subtracted for the sake of clarification. Stigma, Discrimination and Loneliness : Noah's story Kortney : Is there a stigma that clients fear associated with having HIV? Noah : Once you get this disease, you really get Like a lot of people who come to see me, it's the dilemma. Well, I'm lonely. Why are you lonely? Because I'm not dating. Why aren't you dating? Because if I date, I have to tell. Okay. And then, just in their mind, if I do fall for someone, and they do fall for me, eventually, I'm going to have to tell them. Then, it's the fear of all that, and pretty much the fear of ab andonment. And for a lot of people, the fear of, well, the whole thing if they know, they're going to tell everybody. And you know, I haven't told anybody. And I was talking to someone this week who hasn't even told one family Nobody knows. Not a pa rtner. Nobody knows. We are the only people who know. And their anonymity is kind of safe. I don't know, I've talked, four, five thousand people have come in here. And you know, twelve hundred of those are HIV positive. So, you never know someone in the lobby. They could be here for an ear infection. They could be here for an asthma attack. They could be here for ulcers. They could be here for a pap smear. So, it's not a given, when you walk through that door, that you're HIV positive and that's why you're here.
! 82 In fact, I think a lot of our clients who are not part of t he Ryan White P rogram 31 don't know that we see people with HIV, yeah. So, and we work really hard that that's the case. We don't want to be known as the AIDS clinic, or the HIV clinic. It's just not true. It's a small percentage of what we do actually. Even though we did see twelve hundred K. : Do you think that more people would stop coming if they thought that people with HIV? N .: Some, some I imagine probably would, ye ah. I mean, I'll give you an example. I have an African American female client. She is 46 years old. Who her family, until the past six months Now listen to me, until the past six months, this was just six months ago that they started this change. B efore then, when she went to family gatherings, Thanksgiving, Christmas, whatever, they fed her on a paper plate with a plastic fork, throwaway cup. If she had to use the bathroom, which she tried not to because it was embarrassing because of what they w ould do afterwards. They would go in with Lysol, would be standing at the door waiting with the Lysol, and would Lysol the bathroom when she'd left. 2012, I'm just saying. So, that's pretty amazing to me. Yeah. But so that kind of thing does still ki nd of happen. Other people will tell me they don't want to tell their family because of comments that people have already made about people. You know, he's got that stuff. He's got that thing. And then how they talk about it individually. So, they kno w that person, how they feel about it. !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!! 31 The Ryan White Care Act is named after a child with hemophilia who contracted HIV during is a blood transfusion, became an activist after experiencing discrimination due to his status, and became a well known AIDS activist before succumbing to AIDS as a teenager. This federally funded program helps pay for the care of low income PLWHA. This funding goes toward such programs such as ADAP and HOPWA.
! 83 Isolation and Discrimination The theme of isolation reoccurred in Noah's interview. People talked about not being able to date after a diagnosis for fear of having to disclose their status and subsequent abandonmen t Adam and Sears say "among the many reassessments of future plans and aspirations [of PLWHA] can come a dread or resignation to the end of sexuality (1996:77). Although in many cases seropositivity in PLWHA does not mean the end of chances of romantic attachment, but it c an be awkward and tricky ( Adam and Sears 1996:74 90; Whetten and Ngy uen 2002:112 121). In the story that Noah told of the woman who disclosed her status to her family, the fears surrounding stigma came true. Whetten and Ngyuen talk a bout how clients sometimes fe lt as though they had no choice but t o hide their status due to their reasonable fear of dis crimination: "They believed only that they wouldnever be close to anyone again. They feared rejection and did not want to share the H IV diagnosis with their family or friends. Some partic ipants were indeed viewed as a disgrace' to their family once they told their family about being HIV positive" (2002:98). While the woman's story did not explicitly suggest that her family viewed her as a disgrace, there was a certain level of rejection that she experienced when at family gatherings. In a way, her experience was similar to "social death." Veena Das talks about soci al death in respect to families in India rejecting their daughters after rape. She explains, "The classic ritualistic solution in this case is for the social body to cut itself completely from the polluted individualSuch women who were violated and rejected may be said to be occupying a zone between two deaths, rat her t han between life and death (1997:78 79). The woman from Noah's story was not completely cut off from her
! 84 family and her social circle. However, the unnecessary "sanitation" utilized in order for her to be in the house was a ritualistic way of cutting her off as the polluted individual. After my interview with Noah, he talked to me about how things always were substantially worse before something better came along. He told me that all signs pointed to the ushering in of an age of love, the "Age of Aquari us," and not to worry because all of the pain in the world including discrimination would soon come to an end. He smiled sincerely, a little teary eyed. In that moment, perhaps more th an any other, I realized that most of the people who took on the task of caring for marginalized PLWHA were the opposite of those found in mainstream, conservative, South Carolinian culture. In order to fully care for the PLWHA who suffered structural violence, it seemed as though one had to be on some sort of fringe or a little radical. This somehow made sense in an environment where living with HIV/AIDS often meant living as a pariah. Isolation, fear of stigma, and the threat of discrimination haunted them throughout their lives and sometimes into their deaths. Those w ho care for pariahs often run the risk of becoming sort of outcasts themselves and have to be okay with that idea in order to c ontinue carrying out their work.
! 85 Conclusion In this thesis, I have explored stigma, othering, and structural violence surro unding HIV/AIDS in So uth Carolina through historical accounts, interviews, fieldwork and theoretical analysis. During historical res ea rch, I found HIV/AIDS to be an epidemiological crisis steeped in historical structural v iolence In the United State s e arliest dealings with HIV, the virus was imbued with negative moral and soc ial implications used it to intensify certain prejudices such as homophobia and xenophobia. This occurred through the otheri ng and stigmatization of certain risk groups ( most notab ly the so called Four H Club: h omosexuals, Haitians, hemophiliacs, and heroin users) as being the only ones vulnerable to contracti ng HIV. The intense focus on these groups as the carriers of the vir us hid the struggles and deaths of people who had HIV/AI DS and ex isted outside of these groups such as PLWHA who were also women This was reflected in Angela's account given in an interview, of the early days of HIV/AIDS in South Carolina. She described a situation in which black women were living with and dying from HIV/AIDS and yet their experie nces were not being recognized. While she raised the concern that black women were not receiving app ropriate preventative education, her requests for help in order to create programs went largely ignored. Angela describ ed the struggle of creating programs for black women in a way that seemed to expose the structural of racism and gender inequality surrounding early prevention education. This type of structural violence now carried out by government officials con tinues to be seen in proposed and passed budget cuts of programs for the PLWHA community, as the government officials have pointed out
! 86 the mselves, are often minorities. These minorities are often the sub groups of a larger minority. During my fieldwork a t p rev ention services at the Agency, I found HIV/AIDS coordinators taking on the difficult work of educating, counseling, and testing these minority sub groups in the midst of structural violence They did so in spite of the fact that it meant becoming as sociated with the stigmatiz ed PLWHA community. They worked beyond office hours and beyond the confines of the prevention services building to improve the health outcomes of their clients in a tough environment, which included obstacles of poverty, gender inequality racism, homophobia, and more. Prevention services also had the task of enlisting people outside of the PLWHA community in the fight against HIV/AIDS. This mostly took place during events that featured predominantly prominent members of Penumb ratown rallying together to show their support for the cause. At the community meeting the people in attendance most likely had good intentions in regards to finding solutions to the HIV/AIDS crisis in South C arolina. However, they were unable to avoid refl ecting the structural violence of the cul ture to which they belonged. As a result, the meetings revealed how prejudice, often rooted in classism, serves as a barrier for comi ng up with meaningful, structural changes. Structural changes were also not found in AIDS related services. On the one hand, case managers and caretakers provided necessary services that helped PLWHA sustain a basic quali ty of life. On the other hand, applying technical solutions in a mostly mechanical manner in a hidden buildin g did nothing to alleviate the fear of stigma for PLWHA. While hiding the buildings was meant to make clients feel more comfortable
! 87 about confidentiality, it did nothing to convince them that they were not people who deserved stigmatization. Overall, I f ound that while the Agency worked to fight HIV/AIDS and for PLWHA, it proved to be a difficult task as it sometimes reflected, reinforced, and struggled to address the surrounding culture of structural violence, stigmatization, and othering Further Resea rch Earlier I mentioned that when researchers write about HIV/AIDS, they often contribute to the silencing of certain groups of people, while highlighting the stories of others. In some respects, I have followed this trend. However, I would like to take a moment to speak about some of the groups that I did not discuss in detail. While this does not bring their stories into view, it brings forth that they too suffer from this epidemiological crisis and need to be recognized. First, I would like to point out that not all PLWHA belong to one or multiple minority gro ups. While carrying out fieldwork at the Agency I witnessed diversity among the clients who came into the office seeking assistance. Some clients who came into th e clinic were white men who h ad sex with women (MSW) with no history of drug abuse. Some were white women who had sex with men (WSM) with no history of dr ug abuse. These tended not to be the individuals that those working in the Agency talked about in interviews. Academic entries t hat discuss these groups and HIV/AIDS also seem to be lacking. At some points, I did hear it come into question why there was such a strict focus on minority groups in the new HIV/AIDS narrative of South Carolina. Part of it,
! 88 prevention coordinators exp lained, comes down to funding. The more "risk groups" (which includes minorities) that an AIDS services related agency reports serving, the more likely they are to receive funding. Another part of it is that the minority groups the incidence rates of HIV /AIDS among minority groups were rapidly increasing and t he agencies were trying to stymie it. Thus, they focused their attention on the narrative of minorities in the crisis. Another group that I touched on briefly on in this thesis was PLWHA who are i njected drug users (IDUs). As previously mentioned, PLWHA sometimes turn to drug abuse as a method of dealing with depression that arises from contracting HIV Injected drug use was identified as a risk factor for contracting HIV more than two decades ag o (Strathdee et al. 2010:269). IDUs definitely received services from the Agency. At least two of the prevention coordinators went to drug treatment facilities to provide educational services. There was a known "crack house down close to the Agency, wh ich one of the prevention services coordinators someti mes went into to help clients, some of whom were PLWHA, some of whom were not. In trying to protect confidentiality of clients who were using illegal substances that put them at risk for contracting or spreading HIV/AIDS, the employees of the Agency did not go into great depth about IDUs. They also would not allow me to accompany them to outreach events for IDUs. In trying to help me understand forces we re at work beyond the level of individual cli ents m ost p revention coordinators, cas e managers, therapists, and caretakers who I spoke to gave me some variation of the following statement: HIV only functions as a virus. It is not contracted as a punishment for an individual's bad values or a filt er for
! 89 those who are "innately inferior." People are people and everyone is at risk for contracting the virus. They knew that the virus infected people indiscriminately At the same time, they understood that certain environmental conditions includin g but not limited to homophobia, sexis m, racism, and poverty, had negative effects on the health of the people that they served. They knew that the crisis that they were witnessing and trying to manage was partially due to an environment t hat supported th ose conditions In other words, they said that structural violence had negative effects on the people that they served. Structural violence inevitably is the manifestation of those and other environmental conditions that leads to discrimination. South Carolina i s not t he o nly place in the world suffering from the "second wave" of HIV/AIDS On an international front, the second wave of HIV/AIDS is also hitting countries in Eastern and Central Europe (the former Sovi et Union) and China (Twigg 2006;Cooke 2002). P eople who live within South Carolina, the former Soviet Union, and China operate in completely different cultures. From this perspective, it would seem like there would not be overlapping issues when it comes to HIV/AIDS. Yet, like South Carolin a, issues of stigma, othering, and structural violence have roles in how this epidemic is playing out internationally. In Eastern Europe, for example, the stigma against people who have sex with individuals of the same sex drives the virus underground; le aving room for it to go untested and spread further. In China, for another example, issues of othering the HIV/AIDS epidemic and the othering of the type of people who contract HIV/AIDS has led to people ignore their risk for contracting the virus.
! 90 There is a very high stigma against homosexual behavior in Eastern Europe (Operario 2008:8). Laws banning homosexual encounters have only been lifted in most countries within the region since the mid and late 1990s (Bozicevic et al. 2009:336). In two countrie s, Turkmenistan and Uzbekistan, such laws persist. Whether laws do or do not exist, discrimination against and stigmatization of homosexual behavior continues in Eastern Europe and Central Asia. As a result, an epidemic of HIV/AIDS in men who have sex w ith men has been driven underground. Statistics for the spread of the disease in this risk environment are lacking. In Ukraine, for example, MSM who get tested typically fail to report the true reason behind why they are being tested (UNAIDS 2009 ). They are more likely to say that they have been injecting drugs or having unprotected heterosexual intercourse before admitting to homosexual intercourse. This has pushed the count of how many within this group are currently infected with HIV/AIDS to an artifi cially low number. For instance, in Turkmenistan, none of the cases of HIV/AIDS are off icially reported in MSM ( 2009). In Ukraine, according to official reports, out of their ever growing cases of HIV/AIDS, less than one percent is attributed to MSM. Acc ording to numbers collected by NGOs, including UNAIDS, this number is closer to something between three and fifteen percent. As previously mentioned, not all men within this environment consider themselves gay. Part of the population of men who have sex w ith men is comprised of sex workers who do not consider themselves to be gay. Most male sex workers are driven to sex work by poverty (Farmer 2005:47). Nonetheless, it is known that male sex workers are often
! 91 young and engage in activities that put them at a higher risk for HIV/AIDS (Bozicevic 2009:341;Farmer 2005:47). In this region, men who have sex with men who are not sex workers are known to frequently have sex with male sex workers (Bozicevic 2009:341). If HIV/AIDS is contracted in this risk enviro nment, it often does n ot stay there. In many cases, men who have sex with men also have sex with women. Therefore, there is a chance that men who have sex with men infected with the disease could transmit it to their heterosexual partners. So, as with t he risk prone environments in South Carolina, one sphere of life often reaches into and has impacts on other spheres. In China, the narrative of HIV/AIDS has been highly racialized (Hood 2011). The virus has been "othered" as a pathogen contracted by f oreigners with values that do not match those of the Chinese. As Hood explains: Over time, HIV came to be presented as a disease of Euro American homosexuals and black Africans Reports on HIV positive Asians in neighboring countries and diasporic commu nities in China's media were infrequent and infinitely more subtle, robably because these gr oups were uncomfortably close t o homeAlthough each type of sufferer was constructed using [a] different language, all reflected local hegemonic understandings of othered" people, places, and diseases. As HIV became better known over time, the "facts" of blood and fluid exchange evolved into understand of HIV/AIDS based on moralized evaluations of sexual behavior, sexual potency, unfavorable cultural characterstics and habits, primitivity, delayed sociocultural development, and poverty based despair. (2011:6) In other words, in China, this is a virus of outsiders or people who were considered morally or developmentally "inferior." Most posters discussing the preve ntion of HIV/AIDS do not feature the faces of the majority Han Chinese people. Instead, they feature the images of black Africans (2011:4).
! 92 The narratives about HIV/AIDS in South Carolina, Eastern and Central Europe, and China share the idea that HIV/AID S is someone else's problem. It is the problem of groups that often suffer the brunt of discrimination, the "other": sexual minorities, racial minorities, people living in poverty. The aforementioned places where people are following the same logic are no w experiencing a surge in cases of HIV/AIDS that reaches beyond the confines of stigmatized "risk groups." In understanding this, it seems that now would be the time for these places to reexamine previously held beliefs about stigmatized groups, understan d that humans are inevitably interconnected, and to look at the correlation between structural violence and high rates of HIV/AIDS within their borders.
! 93 Appendix Figure 1 : Graph of Cases of HIV/AIDS by Race and Sex Source: SCDHEC
! 94 Fig ure 2 : Incidence rates for AIDS cases in South Carolina from 2011 Source: SCDHEC
! 95 Table 1: Ex planation of how to use tables Source: SCDHEC Table 2: South Carolina's ranking in AIDS cases by incidence, rate per 100,000, and number of cases Sou rce: SCDHEC
! 96 Table 3: Rankings by AIDS cases of major South Carolina cities Source: SCDHEC
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