Chapter 2 aids, National Fear, Literary Production
Hospitals are now so filled with aids patients that there is often a waiting period of up to a month before admission, no matter how sick you are. And, once in, patients are now more and more being treated like lepers as hospital staffs become increasingly worried that aids is infectious…. Most hospital staffs are still so badly educated about aids that they don’t know much about it … aids patients are often treated like lepers. larry kramer, “1,112 and Counting” (1983) ... Felix: Aren’t you worried about contagion? I mean, I assume I am about to become a leper. larry kramer, The Normal Heart (1985: 53) ... You know the scorn with which people treat the aids victims – as though they were suffering from leprosy…. Have you ever stopped to ask yourself how lonely these people get? Don’t we still pass for human beings deserv- ing love, attention and company … or have we degenerated so much as to drop the human status? carolyne adalla, Confessions of an aids Victim (1993: 51) ... God … Why do you dare take children and leave old wrecks like myself on this Earth? Are you the same God who with just a touch of the hand cured a man afflicted with leprosy? If so, your long record of experience should get rid of the [current aids] abomination of this world. siphiwo mahala, When a Man Cries (2007: 155) ∵
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Writing in the early years of the hiv/aids epidemic, American activist and dramatist Larry Kramer (1935–) warned the gay community that even in hospitals, people with aids were being treated “like lepers.”1 And he has the character Felix Turner, Ned Weeks’s lover in The Normal Heart (1985), assume that, having been diagnosed as hiv-positive, he will not just be treated like a person with leprosy but in fact will actually become a leper, or social outcast.2 Eight years later, Carolyne Adalla, one of Kenya’s first creative writers to engage with hiv/aids, has the protagonist of the epistolary novella Confessions of an aids Victim (1993) write her friend despairing that once word gets out about her condition, she will be abandoned, as though she had leprosy, as though she were no longer human.3 In the first decade of the twenty-first century, invoking leprosy as both a stigma and an opportunity for the heavens again to relieve human anguish, an aging congregant in the South African writer Siphiwo Ma- hala’s novel When a Man Cries (2007) pleads that the heavens grant the same mercy to those suffering with hiv/aids as Luke depicted Jesus Christ bestow- ing on a man “full with leprosy.”4 Kramer, Adalla, and Mahala are only three of the many writers whose char- acters equate hiv/aids and leprosy.5 Although these diseases are notably
1 As discussed below, hiv and aids are not synonymous, but the term hiv/aids generally is used to refer to the range of conditions caused by being infected with the human immuno- deficiency virus. 2 A decade later, Abraham Verghese (1955–) describes in My Own Country: A Doctor’s Story (1994) a 1983 encounter with a gay man suspected of having aids who complains that in the hospital he was “being treated like a leper. As if I have aids” (1994: 28). And Will Johnson, one of Verghese’s patients, explains to the doctor his utmost faith in Jesus Christ, who had “healed people with leprosy – the aids of His time. I knew that He’d know what I’d been going through all the way” (292). 3 Confessions of an aids Victim is Adalla’s only novel. Little is known of her life except that she was raised among the Luo in the Siaya District of Kenya and earned a degree from Egerton University in Nairobi (Krüger 2011: 109). Similarly, the first-person narrator of Zimbabwean former model, writer, and aids activist Tendayi Westerhof’s (1966–) autobiographical novel Unlucky in Love (2005) witnesses a visiting pastor declare, “aids was here even when Jesus walked on this earth. During Christ’s time he healed a man with a dreaded skin disease…. It’s the same today, with the aids we see among us. aids sufferers are sinners, they are paying for their sins! They must repent. Only then can they be forgiven!” (2005: 90). In so doing he echoes Zimbabwe’s president Robert Mugabe (1924–2019), who claimed that aids was a message from God, calling on people to reform, and who believed homosexuality was a national threat (Attree 2010: 12). Furious, the narrator of Unlucky in Love walks out of church, but she recog- nizes that “this was the kind of stigma I would have to face, even in places where I should feel safe and nurtured” (91). Westerhof’s work has continent-wide appeal (Attree 2010: 195). 4 I discuss this phenomenon in Chapter 1. 5 Another example is Malawian writer Stuart Mlumbe, whose short story “The Holocaust” (1990), on the early years of the hiv/aids epidemic in his country, notes that fear of hiv/aids
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different biomedically, and although hiv/aids in humans dates back less than a century, not millennia, leprosy and hiv/aids are often linked as two of the most stigmatized in history. hiv/aids has been conceptualized as a new, even more lethal kind of leprosy: both conditions have been thought of as a form of divine retribution; the bodies of persons with hiv/aids, as is the case of per- sons with leprosy, have been seen as tainted with death; people with hiv/aids have been believed to be highly contagious and therefore have been reject- ed from society (Niehaus 2009: 311–312).6 In 1989, Susan Sontag commented, “Even the disease most fraught with meaning can become just an illness. It has happened with leprosy, though some ten million people in the world, easy to ignore since almost all live in Africa and the Indian subcontinent, have what is now called … Hansen’s disease. It is bound to happen with aids, when the illness is much better understood and, above all, treatable” (1989: 181). But de- spite Sontag’s optimism, three decades later, aids remains much more than “just an illness.”7 Even more so than leprosy and perhaps more than any other health condition in recent times, hiv/aids has made clear the devastating ef- fects of stigma – the stigma of a particular condition and the longstanding stigmas against high-risk groups that predate that particular condition – on everything from prevention and rates of infection to testing and diagnosis, to progression, to quality of life, survival, healing, and attaining wellbeing.8 Since the inception of hiv/aids, much global literature that grapples with the disease – understood broadly as everything from oral and written poet- ry and drama to the novel and short story to memoir and other life writing, literary nonfiction, and investigative journalism among other genres – has exposed and decried the stigmas both against hiv/aids and against people most vulnerable to contract the disease, often depicting the resulting social discrimination as increasing the physical and psychological suffering of indi- viduals, communities, nations, and ultimately humanity writ large. As shown in Chapter 1, much literature on leprosy depicts stigmas against the disease as
initially was so penetrating that “the bargirls became as untouchable as lepers,” and this even without having (yet) contracted the virus. And there is Kenyan writer Margaret A. Ogola’s (1958–2011) novel I Swear by Apollo (2002), where the narrator comments, “There was also the terrible stigma. aids was the leprosy of modern times” (2002: 92). Similarly, in Indian writer Siddharth Dhanvant Shanghvi’s short story “Hello, Darling,” the narrator remarks, “The dis- grace shrouding hiv in India provokes menacing acts of hatred, reserved, in another era, for lepers” (2008: 68). 6 As frequently was true of people with leprosy, people with aids were often viewed as “corps- es that live” (Niehaus 2007: 848). 7 So too of course does leprosy, as discussed in Chapter 1. 8 Samuel K. Cohn (2018) examines social responses to epidemics from antiquity through hiv/aids, arguing that they have been far less violent than is generally assumed.
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I had come to Bangalore [a megacity in southern India] to learn about the stigma faced by wives and husbands, daughters and sons, who discover they are hiv positive…. Most Indians with hiv face far more than the threat of disease. In villages and cities, kitchens and bedrooms, they live in the grip of a stigma so powerful that families frequently reject their own. Children are sometimes barred from attending school. Healthy peo- ple are subjected to a kind of cultural quarantine, as if aids might be transmitted by touch. Far too often, people who are hiv positive are treated as little more than walking infection…. Indians do not associate aids with blood transfers or drug use…. To most people, it simply means sex. And not just any sex – sex with girls for hire, sex that is not mention- able, sex that gives even a good son a bad reputation, sex that is deadly. The disease functions as a scarlet letter. (2008: 314, 319)9
The following pages provide essential context for Chapter 3, which focuses on global literature on hiv/aids, analyzing narratives that reveal the tremendous power of stigma and the necessity of dismantling such destructive individual, communal, and social assumptions about this disease and about people with this disease that make aids a modern scarlet A.
9 Nalini Jones’s contribution is titled “Love in the Time of Positives.” See also Nikita Lalwani’s contribution to aids Sutra, “Mister X versus Hospital Y,” on the former physician Dr. Tokugha, who had worked in a Nagaland (northeast India) hospital as an eye consultant. Toku, as he prefers to be called, learned he had aids from his brother, who one day suddenly told him, “Your wedding has been called off because you have aids” (2008: 22). The family had been informed of Toku’s diagnosis some six months before, when he had donated blood to help his brother-in-law’s uncle, but the family did not share this information with Toku, instead en- couraging him to become engaged and plan his wedding. As Toku asserts, “Everyone knew. But it should have been my decision…. With aids, there was such a stigma then [twelve years ago]. People didn’t understand the issues…. There is such a stigma, so much shame; I know I have to leave there. I don’t have my job any more. People are criticizing me. I start thinking I want to disappear” (24). The title of Lalwani’s essay refers to the court case lodged against the hospital for violating basic confidentiality rights. Anand Grover, the attorney who han- dled the case, argued to the courts and ultimately the Supreme Court that “leaking Toku’s status to the wider community, instead of giving him the information, had resulted in the destruction of the fabric of his life – social exclusion, humiliation by friends and family, the loss of his post at the Nagaland eye hospital, the dissolution of his reputation, and life as he knew it.” But the Supreme Court ruled against him and additionally denied hiv-positive in- dividuals the right to marry (30).
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1 hiv/aids – The Global Epidemic
To date, hiv/aids has claimed more than 35 million lives. With 36.9 million people infected with hiv in 2017, only 59 percent of whom were on some form of antiretroviral therapy (art), hiv/aids continues to be one of the world’s most significant health challenges, especially in low- and middle-income countries. Conditions are worst in sub-Saharan Africa, where 25.6 million peo- ple are living with hiv (World Health Organization 2019c). Globally, nearly 1 million people died of hiv/aids-related conditions in 2017; that same year nearly 2 million people were newly infected (ibid.). To be sure, new infection rates have fallen more than a third since the turn of the twenty-first century, and annual hiv/aids-related deaths have fallen nearly 30 percent. But stig- mas, both social and internal, remain a significant impediment to prevention, care, healing, and wellbeing, and there is still no vaccine or cure.10 aids is caused by hiv, which attacks the body’s immune system and makes it susceptible to fatal diseases. hiv has infected humans since at least the early decades of the twentieth century, although the precise moment of the cross- over from the chimpanzee subspecies Pan troglodytes troglodytes (the source of hiv-1) remains unknown.11 The eventual pandemic was facilitated by hu- man interventions between the 1930s and 1970s, including colonization and colonial medicine, urbanization, and likely even public health campaigns (Pe- pin 2011: 5). In May 1980, the World Health Organization announced on the front cover of the journal World Health that “Smallpox is dead!,” culminating a series of successful battles against infectious diseases that gave the healthcare community, and society, a false sense of security.12 Just over a year later, in June
10 Until recently, the two known exceptions were the so-called Berlin Patients, the first of whom remains anonymous and the second of whom is American Timothy Ray Brown (1966–), who was diagnosed with hiv in 1995 and was on art until 2006, when he was diagnosed with acute myeloid leukemia. He then received a bone-marrow transplant from a donor resistant to hiv. Since then he has maintained undetectable levels of hiv while remaining off of art (Holt 2014). In March 2019, scientists revealed similar success with the so-called London Patient. 11 Iliffe gives examples of patients who likely were infected with hiv in the 1950s; one con- firmed case is from western equatorial Africa, but others are from the United States and Canada (2006: 3). The human immunodeficiency virus comes in multiple forms, with hiv type 1 (hiv-1) Group M the strain responsible for the global epidemic (Avert 2019c). 12 Smallpox, one of the world’s deadliest diseases, has a history dating back millennia. As Donald Ainslie Henderson, who in 1967 became director of a worldwide campaign to eradicate smallpox, describes it, “No disease has been so greatly feared or worshipped – no disease has killed so many hundreds of millions of people nor so greatly altered the course of history itself” (2009: 19). Fear of smallpox as a biological weapon became a
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1981, the American public was first informed of hiv/aids; the U.S. Centers for Disease Control (cdc) reported unexpected clusters of previously rare diseas- es such as Pneumocystis carinii pneumonia and Kaposi’s sarcoma, primarily in young gay men in the United States.13 In the following months, these and other formerly rare diseases began occurring in significant numbers among addi- tional groups, namely hemophiliacs, blood-transfusion recipients, and intrave- nous drug users, as well as the partners and infants of these individuals.14 And in the next few years, nations around the world reported their first cases. More than thirty years later, in some countries, including the United Kingdom (0.19%), India (0.3%), and the United States (0.4–0.9%), national prevalence is comparatively low, with certain areas moderately to notably more affected than others. In other countries, however, such as China, certain areas have se- vere prevalence while national prevalence remains low at less than .1 percent.15
concern after the breakup of the Soviet Union and resurged after the September 11, 2001, terrorist attacks. See also Chapter 7. 13 Recent research has shown that the strain of hiv responsible for nearly all the aids cases in the United States was carried from Zaire to Haiti in the late 1960s, spread to New York City in the early 1970s, and to San Francisco around 1976 (McNeil 2016b). The New York Times first reported on aids on July 3, 1981, in an article titled “Rare Cancer Seen in 41 Homosexuals.” But the newspaper was notoriously slow in publishing additional stories about the disease, and it took some time before its editors deemed the word “gay” printable. Larry Kramer addresses this phenomenon in The Normal Heart, dis- cussed in Chapter 3. 14 aids cases involving women were downplayed for years by scientists, physicians, the me- dia, and women’s magazines, among many others (Farmer 1996). Pemberton calls atten- tion to the tragedy of people with hemophilia, for whom the very blood transfusions that enabled them to lead relatively “normal” lives took their lives at an alarmingly high rate: nearly 90 percent of the more than ten thousand patients categorized as “severe hemo- philiacs” acquired hiv from the blood products they infused to control their disease. As Pemberton questions, “How are we to understand the fact that those hemophilia patients whose conditions were most heavily and expertly managed later proved to be at the high- est risk of post-transfusion infections? What does it say about ‘modern’ medicine and so- ciety that our most advanced, technology-intensive efforts to manage disease and pro- mote health actually facilitated the opposite – greater debility and premature death?” (2011: ix). 15 To give two examples from India, where aids was first documented in 1986, in 2007, nearly 20 percent of the msm (men who have sex with men) community in the southern Indian megacity of Bangalore was hiv-positive, a rate twenty times higher than the rate of hiv/aids in the broader population (Kesavan 2008: 180). And in the northeast Indian state of Manipur, the ready availability of drugs (many from nearby Burma) and lack of oppor- tunities for young people led to a sizable population of drug addicts, nearly 20 percent of whom were hiv-positive a decade ago; Manipur currently has the highest hiv prevalence rate in India, at 1.06 (Siddhartha Deb 2008; “National hiv Prevalence Rate” 2018).
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In still others, such as several countries in sub-Saharan Africa, national preva- lence is startlingly high, at over 20 percent.16 Medical research on hiv/aids and the search for effective treatments were delayed, yet even though research funding and effectiveness were far from op- timal, and despite the initial failure of the healthcare community to recognize that a previously unknown microbe was causing the disease, a number of im- portant advances were made in the 1980s and 1990s.17 The human immunode- ficiency virus was identified in 1983; the first commercial hiv test was approved at the beginning of 1985; and Azidothymidine (azt), the first medication for hiv, was approved in 1986. Combination drug therapies for hiv were intro- duced in 1992, and highly active antiretroviral therapy (haart) has been avail- able since 1996. Over the past decades, the multi-drug approach has trans- formed hiv into a chronic, manageable condition in wealthier parts of the globe. And Truvada (Emtricitabine/tenofovir), approved by the U.S. Food and Drug Administration in 2012, as well as its generic alternatives, are close to 100 percent effective at preventing infection with hiv (Albeck-Ripka 2019: A4). But sharp disparities in access to pharmaceuticals, not to mention access to high-quality care, mean that aids remains an acute and often fatal disease for more than half of those worldwide infected with hiv.18 Even wealthier coun- tries have not facilitated effective care for all those within their borders. As a
16 Most of the world’s countries with high adult hiv prevalence are in sub-Saharan Africa. In 2018, Swaziland had 27 percent adult hiv prevalence, the highest in the world, followed by Lesotho (25%) and Botswana (21.9%). That same year, South Africa had 18.9 percent adult hiv prevalence (World Atlas 2019). Eastern Europe has a notably growing hiv/aids prevalence; of particular concern is the Ukraine, with nearly 20 percent of women af- fected. For a first-person account of the hiv/aids epidemic in the Ukraine, see Dutch- born Australian and Scottish writer and former nurse Michel Faber’s (1960–) “The Ukraine: Are We Leaving Already?” Faber describes the terrible stigmas surrounding hiv/aids there, noting that people do their best to hide their hiv-positive status, while the terminally ill “are kept in conditions the Ministry of Health would rather not adver- tise” (2010: 242). 17 Altman (2011) refers to a lengthy editorial in the December 1981 issue of the New England Journal of Medicine that explores possible causes of aids but does not mention the chance of an unknown microbe. 18 Truvada costs over $20,000 per year in the United States, a markup of 25,000 percent (Krellenstein et al. 2018), although as of June 2019, most private health insurance compa- nies were required to subsidize the full cost for their policy holders (Albeck-Ripka 2019: A4). Albeck-Ripka discusses how PrEP (pre-exposure prophylaxis), readily available in Australia, has resulted in drastically reduced rates of new infection in that country. This is in contrast to the United States, where many who are uninsured cannot afford the medi- cation, in poorer and more rural areas even some physicians have not heard of it, and it has been stigmatized as promoting promiscuity (ibid.).
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19 Australia itself is not immune to disparities in accessibility. As Albeck-Ripka notes, rates of the virus have been stable among Torres Strait Islander as well as Aboriginal Austra- lians, even as they have plummeted among Australian-born urban gay men (2019: A4). 20 New hiv medications are continually being developed, but as with many drugs, side ef- fects can be brutal. Moreover, managing a chronic disease that waxes and wanes can en- tail “a continual reworking of identity” (Becker 1994: 124), and many chronic diseases are stigmatized (Scandlyn 2000). Green discusses changing social attitudes to long-term con- ditions and asks whether it is possible “to be ill without stigma” (2009: 3). 21 See France for more on the “heavy burdens of survival” and the “survival guilt” surround- ing hiv/aids (2016: 6, 514).
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A person with hiv has either done something to cause the infection: had sex with an infected person, used a contaminated needle, or had a nee- dle-stick injury. Or they have had something done to them: been raped, born to an infected mother, or received infected blood. This leads to con- cepts of innocence and guilt. Stigma and blame are further compounded because many of the behaviours that lead to hiv transmission are cir- cumscribed by society. Ibid.: 117–118
Stigma here comes full circle. Not surprisingly, social stigmas against hiv/aids, as well as longstanding stigmas against populations at greater risk for the disease, have severely in- creased the psychological distress of individuals with hiv/aids. Social stigmas trigger marginalization, which readily leads to internal stigma. These stigmas, both social and internal, have tremendously complicated efforts at prevention, care, healing, and attaining wellbeing. In so doing, stigmas have notably ampli- fied physical suffering and mortality rates. At times, stigmas against hiv/aids are said to be worse than the physical symptoms of the disease itself; stigmas almost always worsen the physical manifestations of the disease, for both indi- viduals and communities. As Jinhua Guo and Arthur Kleinman have noted: “Stigma drives gays, sex workers, and drug users underground and discourages them from seeking medical treatment – a particularly troubling consequence in light of the fact that these groups are associated with heightened risk of fall- ing victim to infectious disease” (2011: 256).22 Similarly, as U.S. Surgeon Gen- eral C. Everett Koop (1916–2013) remarked in his 1986 report on hiv/aids, “Be- cause of the stigma that has been associated with aids, many afflicted with the disease or who are infected with the aids virus are reluctant to be identified with aids” (1986). In numerous countries, including the United States, stigma also significantly slowed government responses and led to national negligence, which contributed to hiv/aids gaining a stronghold among vulnerable groups and eventually spreading among broader populations (Cai 2006: 172).23 Even when people do seek testing and care, if their communities lack advocacy and
22 Guo and Kleinman’s chapter focuses on China, but their observations on stigma apply more broadly. 23 Cai’s essay focuses on China, but his arguments are more generally applicable.
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24 Many countries, including China and the United States, initially provided only limited funding for hiv prevention. In China, until the sars epidemic of 2003, the majority of hiv funding came from international donors (Yip 2014: 139). With sars, the Chinese gov- ernment began to pay more attention to public health and increased hiv funding. 25 Mutembei argues that the East African hiv/aids story begins with the belief in the exis- tence of witches and that attitudes and stigmas vis-à-vis the disease can be traced to this myth (2015: 193). Liddell et al. (2005) examine how hiv/aids has been accommodated into established indigenous African views of disease. See also Richter et al. (2017), who describe similar circumstances in Ghana. 26 Richter and colleagues report that in Ghana, so extreme is the stigma against hiv/aids that women who have tested positive continue to breastfeed their children despite the risk; women in rural Ghana who bottle-feed their infants risk being labeled hiv-positive (2017: 52). 27 Even playing the role of a person with hiv is risky, as demonstrated in the 1999 Chadian film Bye Bye Africa.
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prevention. Women are also wrongly stigmatized as the primary vectors of hiv transmission. In Malawi, for instance, the term for a sexually transmitted dis- ease is “woman’s disease.” In many cases, women in sub-Saharan Africa who are hiv-positive or suspected of being so are beaten or abandoned, making it almost impossible for them to receive proper care.28
2 South Africa – Silence, Secrets, Accusations
Of particular concern is South Africa, where early denial of the epidemic by the National Party and anti-apartheid leaders alike left millions vulnerable. As one Natal doctor lamented, “At first the government didn’t take aids se- riously…. Then, during the state of emergency, it used aids for political games, saying things like ‘Beware of the a.n.c. [African National Congress], they come from outside the country and bring aids’” (Engel 2006: 223). Yet, as South African journalist and author Adam Levin explains in the memoir Aidsafari (2005), “Before Aids was a ‘black’ disease, it had been a ‘gay’ disease, and the deep-rooted homophobia of the apartheid regime had stymied all ef- forts to acknowledge and address the disease during the critical period of the late eighties and early nineties…. With regards to the survival of its people, the prejudices of one government had simply made way for another’s” (2005: 46–47). Levin likewise declares, “As the statistics attest, South Africa, with its legacy of apartheid and long-engrained culture of secrets and lies, was all the more vulnerable when the pandemic struck, and thousands of lives have been lost to shame and ignorance” (226–227).29 Through the late 1990s, well after the abolition of apartheid and the transition to African National Congress (anc) rule, physicians in South Africa routinely hid aids diagnoses and falsi- fied causes of death.30 In Three-Letter Plague: A Young Man’s Journey through
28 This paragraph draws from Rankin et al. (2005). Rankin and his colleagues also briefly address the internalized stigma that plagues many who test hiv-positive. 29 Aidsafari, which is very open about the physical suffering caused by aids, covers Levin’s struggles with the disease between March 2004 and June 2005. Levin notes the irony of being “bang in the epicenter of the Aids pandemic” and yet having had no sense of the aids experience or the extent of pain and anxiety involved (2005: ix–x). Levin is known primarily as a fashion writer, with additional interests in African craft, design, and popu- lar culture. In addition to Aidsafari, he is author of The Wonder Safaris (2003), which de- scribes his travels through twenty African countries, and The Art of African Shopping (2005). For more on hiv/aids representations in South Africa, including in children’s lit- erature, see Grünkemeier (2013). 30 Although Nelson Mandela (1918–2013) spoke very little on hiv/aids while president of South Africa (1994–99), he was deeply concerned with his successor president Thabo
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Mvuyelwa Mbeki’s outright denial of the disease, and he devoted considerable time to hiv/aids advocacy after leaving office. In 2005 he revealed that his son Makgatho Le- wanika Mandela (1950–2005) had died from aids and called for the normalization of the disease, arguing that “the only way to make it appear like a normal illness like tuberculo- sis, like cancer, is always to come out and to say somebody has died because of hiv/aids. And people will stop regarding it as something extraordinary” (“Profile” 2008). Three years earlier, Mandela had taken the similarly notable step of visiting an arv program in Khay- elitsha by Médecins Sans Frontières and donning the “hiv-positive” T-shirt promoted by the Treatment Action Campaign (Davis 2013). 31 For more on Mbeki and aids see Steinberg (2008: 101–103). Jolly links Mbeki’s aids deni- alism with his silence on South Africa’s rape crisis (2010: 127). Dr. Mark Wainberg, presi- dent of the International aids Society, held the group’s 2000 conference in Durban, South Africa, in the hope that Mbeki would use the opportunity to tell the truth about aids, but Mbeki refused (Sandomir 2017). A community leader in South African writer Sindiwe Magona’s novel Beauty’s Gift na- ively argues that had the aids pandemic come during apartheid and had the apartheid government dragged its feet as the democratically elected government is doing, “the whole world would have supported us. The world would have condemned the genocide perpetrated by the apartheid government” (2008: 86). Tragically, the world did not. This leader also accuses the South African government of squandering the country’s resources on arms when what they really need are antivirals. In contrast, the narrator of Zimbabwean writer Lutanga Shaba’s semi-autobiographical Secrets of a Woman’s Soul accuses transnational drug companies of blocking South Afri- ca’s efforts to manufacture cheaper generic drugs and sees those with hiv/aids as “pawns on the global chessboard, where their lives were to be bartered for trade.” Her protagonist watches the news with increasing dismay, “as the UN faces with their meaningless statis- tics were replaced by the politician’s faces, with their arrogant self-important driveling about abstinence” (2006: 91). Regarding hiv/aids in South Africa more generally, as John Iliffe writes, “In its silent origins, its rapid expansion, its association with mobility, its exploitation of gender inequality, and its growing concentration among the poor, South
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Africa’s epidemic was an extreme version of a continental pattern, much as Apartheid had been an extreme version of a wider colonial order” (2006: 47). 32 Questions concerning arvs are raised in literary works such as Liz McGregor’s Khabzela: The Life and Times of a South African (2005), the story of popular South African DJ Fana Khaba, who refused to take them, preferring alternative therapies (Jolly 2010: 125). Other writers condemn Mbeki, one imagining his being chastised by God for not providing his people with arvs (Morgan and the Bambanani Women’s Group 2003: 45). Some in South Africa also believed aids to have been brought to the country from other parts of the continent. South African writer Phaswane Mpe (1970–2004) depicts this xenophobia in the novel Welcome to our Hillbrow (2001), where some accuse Makwere- kwere (foreigners) from Nigeria and Zaire of importing the disease and other ills to South Africa (2001: 20). 33 These attitudes are by no means distinct to South Africa. To give only one example, India decriminalized homosexuality only in 2009.
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34 Levin, a privileged white South African, contrasts his own experiences with aids with those of the majority of South Africans, noting, “While we might have shared a disease, we shared nothing else. There was no way I could ever feel a true sense of empathy with these people, because of one crucial factor – money…. If I, with every available resource, was suffering so much, I could scarcely imagine what they were going through” (2005: 44–45; see also 163–164). Levin also recognizes that in addition to money, care and sup- port are essential. Unlike so many with aids, he tells the reader, he never felt judged and was never subjected to such comments as “You deserve this” or “It serves you right” (45). Nevertheless, he admits that his experience with aids has been a “lonely one”; he yearns for camaraderie, for empathy, something that he himself is unable to give (146). 35 Two noteworthy examples are Tivoneleni Vavasati’s aids Awareness Project operating from Elim in the Northern Province of South Africa, which has produced aids awareness plays beginning in 1991, and the Market Theatre Laboratory aids play Broken Dreams, which since 1995 has been performed in schools across the country. In contrast, Sarafina ii, for which celebrity playwright Mbongeni Ngema (1956–) was commissioned in 1995 by the minister of health for what many considered an inappropriately large cost, has had limited impact. Sarafina ii was given a budget of R14,270,000 (the equivalent of about $4 million), inciting outrage throughout the country. Other challenges were its limited story- line, the heavy equipment required to put on the play (decreasing mobility), and the fact that it is written in English, making it all but inaccessible to many of its target audiences (Mda 1998: 262–264). 36 Rasebotsa et al. list exceptions (2004: 15). See also Ōike (2013), Mwangi (2000: 272), and Mutembei (2015: 187). Writers in Malawi – which shares borders with Tanzania, Zambia, and Mozambique – began publishing aids stories in 1990 and from the beginning con- tributed to aids advocacy, participating for instance in writers’ workshops on creating materials for schools and becoming directly involved in the National aids Secretariat’s Information, Education, Communication campaigns. Dramatists and musicians were likewise mobilized (Chimombo 2007: xi). See Chimombo for more on aids in the Mala- wian short story (the dominant genre of African aids literature), novel, poetry, visual art, music, and film from 1990 to 2006. Commenting on the restrictions placed on writers
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Western counterparts for downplaying and even remaining silent about hiv/aids in their works.37 The most prominent example is the celebrated nov- elist and playwright Zakes Mda (1948–), who was censured in 2003 by the American novelist Norman Rush (1933–) for omitting any mention of hiv/aids
under the regime of President Hastings Kamuzu Banda (1898–1997), Chimombo notes that writing on aids was delayed because “there couldn’t be a disease that Dr. Banda couldn’t cure. It was sedition to even talk about the incurability of aids” (2007: 214). Importantly, however, once Rasebotsa et al. reached out to writers seeking submis- sions on hiv/aids for their 2004 anthology Nobody Ever Said aids: Stories and Poems from Southern Africa, they received enthusiastic responses, suggesting that many writers were ready to talk about the disease. Many of the poems and short stories condemn the silence that “continues to haunt the lives and deaths of southern Africans in the time of aids” (2004: 12). For some writers, including South African Siphiwo Mahala, the request from Rasebotsa launched a new literary interest; Mahala’s “Mpumi’s Assignment” (2004) formed a foundation for later works on hiv/aids (Attree 2010: 175). Rasebotsa et al. confine their focus to literature written in English, which for many Africans is the language of choice for work on hiv/aids. Two prominent exceptions are South African Koos Prinsloo (1957–), who wrote stories on hiv/aids in Afrikaans in the 1980s, and East African Swahili-language writers and theater producers/directors. For more on the latter see Mutembei (2015) and Mwita (2011b). Phaswane Mpe has spoken on how difficult it would have been for him to deal with the topic of hiv/aids in the Sepedi language (2001: 25). For his part, Mahala points out that publishers market to schools 99 percent of writing in indigenous languages, which necessarily limits both the size of the audience and what can be said (Attree 2010: 176). At the same time, he notes that he has translated When a Man Cries into Xhosa and that the English version actually “can be viewed as a translation because it’s a translation of Xhosa idiom,” so the Xhosa translation is in a sense “a reclamation of the original thought now in the original language” (ibid.: 176). Interestingly, in the Xhosa version of When a Man Cries, titled Yakhal’ Indoda (2010), English is used to transcribe a brief conversation the narrator has with his brother’s wife regarding the birth of their twin sons; the narrator and his brother’s wife are communicat- ing in English because he has only rudimentary seSotho, the language in which she first speaks when she phones (41). It is also worth noting that many writers incorporate African languages into their English-language writing on hiv/aids. Mahala likewise explains to Attree that he believes writers have a responsibility to bring attention to aids, especially to “link a certain lifestyle with the effects of hiv/aids.” But he additionally points out that there initially was not much awareness among South African writers about hiv/aids, given that it was not a significant part of his life until the late 1990s and that he has not read “a story or a novel or anything like that that interro- gates TB … which was a huge epidemic” (2010: 180). In other words, from his perspective there is little precedent in his culture for writing prose on an epidemic. 37 There are many exceptions. See Attree’s illuminating interviews with African writers (2010). See also work such as Jonathan Morgan and the Bambanani Women’s Group’s graphic novel/art book Long Life: Positive hiv Stories (2003), a collection of stories, art- work, and photography by thirteen women from Khayelitsha (Western Cape) on their lives and experiences with hiv/aids.
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38 Heart of Redness does address numerous other diseases and social responses to them, in- cluding cervical cancer. One of the final scenes in the novel features a woman (NomaRus- sia) dying from this disease who believes she has been cursed, and when Camagu tries to convince her to go to a hospice where her pain will be mitigated and she will be cared for properly, she demurs, asserting that she will die “at this homestead that brought this on me…. Let my death hang on their necks for the rest of their days” (2000: 266). For more on Mda, see Thornber (2015). 39 Mda also has run workshops training hiv-positive people to write (Hawley 2004). Coetzee too was criticized for the absence of fully realized black characters in Disgrace (Donadio 2006). But he does speak of aids elsewhere in his writing, including in Elizabeth Costello (2003), where in the section “The Humanities in Africa,” he introduces a woman working in a hospital in rural Zululand that is facing an aids epidemic. Critics have frequently remarked that there was no literary work equivalent to Larry Kramer’s The Normal Heart (1985) in 1980s or even 1990s Africa. The first South African novel by a woman on hiv/aids was Sindiwe Magona’s Beauty’s Gift (2008). On the other hand, Magona began writing on hiv/aids in the late 1990s with her short story “A State of Outrage,” included in Opening Spaces (1999). Magona’s family was severely affected by the disease. 40 Mda likewise speaks of aids in the later novel The Madonna of Excelsior (2002). For more on Mda and hiv/aids, see Steele (2007).
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3 Tanzania and Kenya – Denials, Allegations, Vulnerability
Tanzania has a much lower hiv prevalence than South Africa at 5.9 percent. It also has a slightly larger portion of hiv-positive adults on art (53 percent). Tanzania reported its first cases of hiv in 1983, among the Haya people in the country’s northwestern region of Kagera.41 By 1987, prevalence was 4.6 percent in Karagwe district, 9.7 percent in Bukoba rural and Muleba districts of Kagera, and a stunning 32.8 percent in the Bukoba urban district (Kaijage 1993: 280, citing Lwihura 1990). As in other parts of the world, arts groups joined the fight against hiv/aids early on: in 1989, the Tanzanian National Arts Council (ba- sata) launched a campaign that had theatrical groups stage plays with aids- related themes based on information from the National aids Control Pro- gramme and other organizations (Mutembei 2011b: 257). Verse on aids first appeared in 1985 with the Swahili-language community oral poem “Maradhi ya Fungi” (Fungi Disease) – which charged that the dis- ease had come to Africa from Europe, in a shipment of used clothing – breaking the literary silence and opening the gates for oral and written poetry. In the Tanzanian Haya community, to give one example, oral poetry was performed beginning in the 1980s in village centers, schools, pubs, and bars to advise peo- ple of the known causes and warn them of the deathly consequences of aids (Mutembei 2001: 15). The Luhaya-language oral poem “Aliyo Silimu” (There Is aids), for instance, puts aids in a class by itself. It declares that, unlike other diseases, there is no cure; the only prognosis is a painful death before which people lose their humanity by decaying like vegetation:
There is aids, the cure of which is death If I become sick in my stomach, there is a cure If I become sick in my chest, there is always a cure. But with aids, the cure is death.
It has stepped on you beware That is death, you decay like beans You wither, and rot like a useless banana stem, that is it, its cure is death. mutembei 2001: 258–25942
41 Experts believe that Tanzania experienced hiv/aids cases well before 1983 (Iliffe 2006: 23). 42 Mutembei’s (2001) Appendix includes more than sixty pages of Haya multilingual (i.e., Luhaya and Swahili) oral poetry on hiv/aids. The book itself first introduces Haya
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The poem obscures the reality of other health conditions, many of which are still incurable. But by speaking this way, the poem sets aids apart, accen- tuating its lethalness and dehumanization.43 While oral poetry on hiv/aids flourished in Tanzania, only two works of fiction on hiv/aids were published there in the first ten years after the disease was reported.44 It was not until the very end of 1999 that Tanzanian president Benjamin Wil- liam Mkapa (1938–) admitted that the epidemic was “an extraordinary crisis that requires extraordinary measures to deal with it” (Tanzania Commission for aids). Eleven months later he established the Tanzania Commission for aids, which declares as its vision “to have a society in which our children can grow up free from the threat of hiv/aids and which cares for and supports all
society before turning to Haya cultural production on hiv/aids in comparative perspec- tive; its principal focus is the use of metaphor and metonymy in Haya oral poetry, but at- tention is paid throughout to combining literary and sociocultural approaches to the study of aids. Mutembei conducted his fieldwork in Bukoba Urban District of the Tanza- nia’s Kagera region (on the western shore of Lake Victoria), the region most affected by hiv/aids. This region’s indigenous language is Luhaya, but Swahili has made significant inroads, and many in Kagera are fluent in both languages. 43 The poem “There Is aids” echoes a Swahili song performed at weddings that declares, “The cure for hiv/aids has four corners” (Dawa ya ukimwi ni pembe nne), that is, a cof- fin (Askew 2015: 256). See also Mũhoro (2007). 44 These are Clemence Merinyo’s short story “Kifo cha aids” (Death from aids, 1988) and Ibrahim Ngozi’s play Ushuhuda wa Mifupa (The Skeleton’s Testimony, 1990) (Mutembei 2001: 44, 56). For more on the latter, which features characters from the United States, Africa, Cuba, and Russia, see Mutembei (2011a, 2015). Elsewhere, Mutembei notes that it took about a decade from the onset of hiv in Tanzania for Swahili-language writers “to start giving aids its due weight in the literary world” (2011b: 256). Countless artists outside Africa also hesitated to speak of hiv/aids in their work. This was true of Dutch writers, even if they themselves were aids patients. The primary ex- ample is Frans Kellendonk (1951–1990), whose novel Mystiek lichaam (1986) features a character suffering from a deadly disease that is clearly aids, although the disease is never named (Hekma 1992: 90). In the case of France, the perception of aids as a “pure invention of American puritanism, homophobia, and sexual hysteria,” a “distinctly Amer- ican phenomenon,” flourished into the mid-1980s (Wetsel 1992: 95–96). Hervé Guibert (1955–1991) and Cyril Collard (1957–1993), France’s first prominent hiv/aids writers, were criticized for failing to challenge dominant stereotypes of people with aids, and espe- cially for depicting their illness as a strictly individual matter, not one created in a specific political and social context, yet as David Caron has argued, their complicity with domi- nant systems “must be understood as part of a much broader strategy of destabilization” (2001: 114–115). Alain Emmanuel Dreuilhe’s (1949–1988) Corps à corps: Journal de Sida (Mortal Embrace: Journal of aids, 1987), France’s first aids memoir, is a notable contrast (Wetsel 1992: 101). Military metaphors dominate this text, enhancing the narrator’s ability to speak of hiv/aids as both a personal and a global tragedy, as well as to place the dis- ease in the context of other global tragedies, especially World War Two. Mortal Embrace also addresses the racism inherent in hiv/aids treatment.
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45 Mkapa was in office from 1995 to 2005. 46 The maximum penalty for same-sex acts between men is life imprisonment. 47 Stephanie Nolan observes that Africa’s tens of thousands of long-haul truckers are “vili- fied all over the continent for spreading hiv” (2007: 45). This is because after the disease became firmly rooted in the Great Lakes region around the East African Rift in the 1970s, it spread along transport and trade routes to rural villages throughout the continent. Aman Sethi similarly discusses India’s National Highway 31 as a main route of hiv trans- mission with its “labyrinthine network of truck drivers, sex workers, pimps and roadside eatery owners”; hiv prevalence is highest for women with husbands working in the trans- port industry (2008: 291, 297). Nolan also explains why many long-haul truckers, like millions of Africans more gen- erally, have refused to modify their sexual behavior – the hardships of the job, or of life, are so extreme that “there was little point in worrying about a tiny germ, given all the other dangers. And no sense denying oneself comforts either” (2007: 50). Similarly, South African Sindiwe Magona writes, “People’s lives have come to mean so little, there’s so little meaning in their lives, that perhaps we sit in, not quite in ivory towers, but relatively speaking, and reflect upon these issues when people whose not even bread and butter issues … are so pressing they don’t have the time to think about these things” (Attree 2010: 61).
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Daniel arap Moi (1924–) even claimed in the 1980s that the uproar over aids was just another attempt by Europe and the United States to blame Africa for their own shortcomings (Booth 2004: 32).48 It was only in 1999, fifteen years after Kenya reported its first case, that Moi declared the epidemic a national disaster and established the National aids Control Council, which worked to increase prevention and provide care to infected and affected people in Kenya (Majalia 2011: 113). Yet Moi remained a staunch opponent of condoms, instead recommending abstinence; like those of many religious leaders, his conserva- tive positions hampered prevention and treatment efforts and left little space for healing. Kenyan women have been especially vulnerable. As is true of wives in a number of societies, refusing to have sex with their husbands puts them at risk of being beaten or even thrown out of the house (Booth 2004: 2).49 This is not to suggest that Kenyan women are powerless; they are in fact constantly nego- tiating when and with whom they will or will not have sex, and healthcare workers have commented on the determination of their female patients to use contraceptives despite the threats made by their partners (ibid.: 4). Nonethe- less, women are vulnerable, evident in the disparity in hiv infection rates be- tween men and women in Kenya and many other societies. In Kenya, the prev- alence rate of women is nearly twice as high as that for men (Pfeiffer 2014: 8). Both Kenyan men and women living with hiv/aids are targets of social stigma, including public verbal assaults, and thus many with the disease do their best to keep it under wraps (ibid.: 250). One resident of the community Elizabeth Pfeiffer studied as part of her fieldwork in a small urban town locat- ed on a major highway in Rift Valley Province reported that in the early years, “People were locked away so they would not infect anyone else. And if people learned that someone had hiv/aids and was having sex with others, the com- munity would kill that person to stop [him or her] from spreading the disease. And also, people have always hated those with chronic diseases and mental
48 Even when 60 percent of Nairobi’s prostitutes tested positive for hiv, President Moi in- sisted that Kenya did not have a significant aids problem (Engel 2006: 297). Ibrahim Ngozi’s The Skeleton’s Testimony (1990) dramatizes the blame and counter-blame of the early years of the aids crisis, featuring an American and an African blaming each other for the virus, and a Cuban and Russian sharing the results of their research (Mutembei 2015: 193). 49 Karen Booth reports the reaction of Kenyan nurses to the recommendation by a Europe- an aid worker that Kenyan women should “sleep on the couch or at the neighbor’s house” if their husbands refused to use a condom or be treated for sexually transmitted disease. The Kenyan nurses laughed, saying, “Can you imagine? … Here … a woman if she tries to say no [to sexual intercourse], she can be beaten or even thrown out” (2004: 2).
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50 Mwita (2011b) discusses at length the contributions of theater-for-AIDS-education pro- grams to ameliorating the severe stigmas, including within families, toward individuals with hiv/aids. 51 In Kenya, narrative on hiv/aids took root in the 1990s, with such novels and novellas as Yusuf Dawood’s (1928?–) Water under the Bridge (1991), Wamugunda Geteria’s (1945–) Nice People (1992), Carolyne Adalla’s Confessions of an aids Victim (1993), and Marjorie Oludhe Macgoye’s (1928–2015) Chira (1997). One of the more explicit works to condemn the oppressive silences surrounding hiv/aids is Kenyan writer Bitungi Matundura’s Sitaki Iwe Siri (I Don’t Want It to Be Con- fidential/Secret, 2008), which describes the plight of aids orphans. The title evokes Tan- zanian Peter Kirumbi’s 1971 novel Nataka Iwe Siri (I Want It to Be Confidential/Secret). Mutembei explains how in Swahili, sexual organs are sehemu za siri (lit. secret/confiden- tial), sexually transmitted diseases were magonjwa ya siri (lit. diseases of secret) and aids initially was referred to as ugonjwa wa siri (secret disease) (2015: 196).
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4 China – Innocence, Guilt, Social Control
Stigmas against hiv/aids have plagued countless countries well beyond sub- Saharan Africa, exacerbating the disease for individuals, communities, and na- tions. China is a case in point. Initially, that nation’s leaders were nearly as loath to speak of hiv/aids as some of their African counterparts. China did not document its first case of the disease until 1985 (an Argentine-American tourist), and despite the 1989 hiv/aids epidemic in Yunnan Province among intravenous drug users, often referred to as the first wave of China’s hiv/aids epidemic, for much of the 1990s authorities insisted and most Chinese be- lieved that hiv/aids was a “capitalist disease,” a result of the “corrupted West- ern bourgeois lifestyle” (Guo and Kleinman 2011: 240; Yip 2014: 140).52 hiv/aids was also believed to be a disease of black Africans.53 Many Chinese affected by hiv/aids were thus doubly stigmatized by Chinese society, first for their eth- nicity, in the case of those who were of non-Han Chinese ethnicity, and second for their “deviant” behaviors (Yip 2014: 141).54 In his discussion of stigma and hiv/aids, Alan Whiteside notes the moral judgments frequently inherent in determining stigma. For Chinese, in a society where aids remains a highly stigmatized condition, the gulf between “inno- cent” and “guilty” undergirds official policy (Guo and Kleinman 2011: 237). Ini- tially, Chinese who tested positive for hiv/aids were classified into several subgroups based on infection routes – blood selling, blood transfusing, drug
52 Other countries likewise initially declared aids an American disease, including France and Germany, as well as the Soviet Union, where hiv/aids was depicted as an American biological weapon (Gilman 1988: 263–264). A popular early name for aids in China was aizibing (艾滋病), a term that also can be written using characters which mean “loving capitalism disease”(爱资病). 53 Hood (2011) exposes how hiv/aids is depicted as a racialized disease in China and par- ticularly its association with Africa and Africans, which are frequently portrayed as a backward land and people. She argues that key to stemming the spread of hiv/aids in China is greatly reducing the portrayals of hiv/aids as a foreign disease. For their part, Sutherland and Hsu (2012) discuss the factors most responsible for the growth of hiv/aids in China, especially the growing inequalities between rural and urban areas and across genders. 54 For more on the relationship among hiv/aids, intravenous drug use, and non-Han peo- ples in China see Peckham (2016: 264–276) and Shao-hua Liu (2011). Liu focuses on the Nuosu society, which harbors serious stigmas against leprosy, tuberculosis, and nauseat- ing body odor, conditions that are considered “hereditary” and thus dangerous to the lin- eage. Although in the past people with leprosy had been killed or sent into exile, people with hiv/aids continued to be included in the community.
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55 It was only after the turn of the twenty-first century that Chinese authorities publicly spoke of gay sex as a risk factor (Guo and Kleinman 2011: 241). 56 Henan, Anhui, Shanxi, Hubei, and Shandong were the five most heavily affected prov- inces (Yip 2014: 142). Central China had been the site of numerous blood markets since the early twentieth century, when missionary hospitals introduced blood-transfusion technology. Blood merchants, who gradually took the place of missionaries, seldom test- ed blood, needles and syringes were not sterilized, and blood from multiple sellers was pooled into a single centrifuge with the extracted red cells re-injected into any number of people via contaminated infusion equipment, a procedure that almost guaranteed the rapid spread of the aids virus (Jun 2011: 80–82). See also Jing’s (2016) description of field- work in Henan Province following the hiv/aids epidemic there. 57 sars is a viral respiratory disease caused by the coronavirus sars-CoV; it generally begins with influenza-like symptoms, followed by acute atypical pneumonia, which can lead to respiratory failure and death (Wenhui Li 2006: 4211). The disease was first reported in China’s Guangdong Province in November 2002 and ultimately spread to nearly thirty countries in Asia, the Americas, and Europe before it was contained in the summer of 2003. Altogether sars infected eight thousand people, claimed close to eight hundred lives, and impacted trade and travel worldwide. Its primary impact was on China (par- ticularly Hong Kong), Taiwan, and Singapore, as well as on Canada, especially Toronto. For discussions of sars and Asia, see Hanson (2010); Peckham (2016: 284–296); Tseng and Wu (2010).
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The third wave of China’s hiv/aids epidemic, which continues to this day, is occurring largely among urban gay men and follows many patterns of the initial epidemic in Europe and the United States (Yip 2014: 144). Also at signifi- cant risk, although seldom recognized as such, are the male members of Chi- na’s economic, political, and social elite, whose demand for commercial sex workers as part of yingchou (应酬) – the requisite eating, drinking, smoking, and entertainment that can include commercial sex for the purposes of estab- lishing relationships and facilitating communication – has shaped China’s hiv/aids epidemic (Uretsky 2016: 1–8).58 So too are non-Han Chinese. Narra- tives such as Uyghur author Tulahan Tuohuti’s (图拉罕托乎提, 1964–) short story “Chanhui” (忏悔, Confessions, 2010) reveal how much remains unsaid about the spread of the disease in these communities.59 Even as prevention and treatment efforts have notably improved over the years, the Chinese government has openly stigmatized people with hiv/aids, using these individuals as warnings to the broader population to avoid engag- ing in “deviant” behaviors (Guo and Kleinman 2011: 255). People living with hiv/aids in China not only must endure the physical anguish brought on by the virus, they also “suffer severely from the discrimination within their com- munities” (Cai 2006: 172). This is because, although it is well known in China that many have contracted hiv/aids through the transfusion and sale of blood, the condition is still widely considered a “dirty disease caused by sexual deviance and drug abuse” (Guo and Kleinman 2011: 255).60 Because carriers of the disease are commonly seen as disloyal to their families, this “leads to the patient no longer being considered a family member. Based on this thinking, hiv/aids patients are considered to have failed to act as moral persons; with- out family recognition and protection, they soon lose their personhood and are considered nonpersons” (ibid.: 255). Guo and Kleinman provide case stud- ies of two individuals who contracted hiv through a blood transfusion and gay sex, respectively. After her condition was exposed in 2001, the teacher who
58 As Uretsky discusses, these men lie outside the generally recognized “risk” groups for hiv/aids, which naturally include female commercial sex workers. These men are unof- ficially expected to solicit commercial sex to attain political and economic success but at the same time must cover up the evidence of their behavior to “uphold the moral princi- ples of their official duties and the party that supports their livelihood.” In this way, Chi- na’s power structures increase the vulnerability of men in power to disease (2016: 4, 8). 59 “Confessions” discusses the spread of hiv/aids through a small group in Xinjiang over the course of a decade. The story depicts hiv/aids as embedded in the landscape of Xinjiang and threatening even those who do not seem vulnerable (Stacey 2018a). 60 Both activities are believed to signal “betrayal of the family” (Guo and Kleinman 2011: 255).
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contracted hiv through a transfusion reports that she lost her job, as did her husband (who was hiv-negative), while their son (who also was hiv-negative) was abandoned by his friends and prohibited from returning to school: “My family became monsters and beasts in other people’s eyes.” For his part, the closeted gay married government employee was forced to “retire” from his po- sition; within his family, he concealed his disease from everyone but his wife, to whom he remained married in name only. He could not tell his parents, fear- ing that they too would be ostracized (ibid.: 249–250, 251–253).61 For these and countless other individuals, stigmas and the prejudices and discrimination they engender severely impact care, health, and quality of life, quite apart from the damage wreaked by the disease itself.62
61 As Li Li notes in her discussion of the hiv/aids documentary film Zai yiqi (在一起, To- gether, 2010) and its struggle against hiv/aids stigma in China, aids patients are often first stigmatized by their immediate and extended families (2016: 245). 62 Johanna Hood (2011) notes that even China’s hospitals stigmatize persons with hiv/aids; in multiple instances, hiv-positive patients are turned away. One 2005 study found that more than one-third of doctors in Yunnan said they would “refuse to treat an hiv- positive patient” (ibid.: 15). Yip (2014) mentions the efforts of several international orga- nizations to reduce hiv/aids stigma in China. Li Li (2016) contrasts the treatment in China of persons with hiv/aids and those with cancer, noting that the former are stig- matized far more than the latter. Lora-Wainwright (2013) analyzes cancer experiences in rural China. Circumstances have been similar for many in Asia. The Hanoi Vietnam Museum of Ethnology’s “Pain and Hope: 20 Years of hiv/aids in Vietnam” (November 2010–June 2011) was the country’s first exhibit on the disease and emphasized the association for many years of people with hiv/aids and “social evils.” As recounted in the museum’s pamphlet on the exhibit, “hiv positive people and their family members are sent away from their homes, offices and boarding houses; their children are pressured to leave school. They might not collapse because of the pain of the disease, but rather due to the icy looks and offensive words from a section of their community.” The exhibit included personal testimony from people living with the disease, in Vietnamese, French, and Eng- lish, including that of a Ms. Phuong Minh, identified as the first hiv patient diagnosed in Vietnam: “There was so much stigma at that time. People bothered me and pointed at me, they said that I lived a degenerate life and thought badly of me like I was a prostitute” (Author’s personal visit). Vietnam’s neighbor Cambodia has made great strides in reducing rates of hiv/aids infection (67% in the last decade) and has only a .7 percent prevalence rate; two-thirds of the 75,000 people with hiv/aids in Cambodia are on arvs. Yet responses to a recent outbreak in Roka (rural western Cambodia) reveal that stigmas remain powerful. In 2015, more than 200 villagers in Roka tested positive for hiv/aids after an unlicensed practi- tioner spread the infection by reusing needles, syringes, and other equipment. Villag- ers reported being “treated with suspicion when they travel outside the village” and observed that “people from other villages are not welcoming us anymore … They
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Literature that grapples with hiv/aids has been relatively slow to take root in China. Telling in this regard is Hu Fayun’s (胡发雲, 1959–) Ru [email protected] (如焉@sars.come, Such Is This [email protected], 2006) on the sars epidem- ic.63 Late in the novel a medical researcher chastises the mayor of a city hard hit by sars for lamenting that medication to combat this disease will not be available for some time. She declares:
You think that what we most need now truly is medicine? Think about it. From its beginning, how many lives has “sars” taken? A hundred? A thousand? Worst case scenario, ten thousand? With China’s hundreds of millions of people, is there anything that doesn’t kill more people than sars? Hepatitis, tumors, heart disease, poisonings, suicides, car acci- dents, occupational injuries, fires, mine disasters … the newspapers are full of them, even the common cold kills more people than “sars.” What we most need now is not medicine, it is calming down the mood of the general population. We need to dispel the panic. This is more important than medicine. (2006: 240)
The researcher astutely observes that shaping public opinion about a disease can be just as important as developing medications to combat that disease. Yet even more noteworthy is the conspicuous absence of hiv/aids on her list of conditions that kill large numbers of Chinese, even though by the turn of the twenty-first century, hiv/aids had claimed far more lives in China, not to mention the world, than sars ever would. Subject to significant official and self-censorship, Such Is This World repeatedly condemns the deceitfulness of Chinese officialdom concerning the severity of sars, together with the silenc- es imposed on the Chinese people. But Hu Fayun’s novel contributes to the even more extreme silences surrounding a much more deadly disease.64 Cen- sorship accounts for some of the silences, but even metaphorical treatments of
discriminate against everyone from the village, including h.i.v. negative people” (Fuller 2015). 63 The novel focuses on Ru Yan, a forty-something widow who after her son leaves to study in France finds solace and then fame on the Internet. When rumors begin to spread about sars, Ru Yan does not shy away from writing about what is happening in her community and country, focusing not only on the disease but also on reactions to it. 64 Rojas (2015) discusses the publication history of Such is this World; Kong compares the various translations (2018: 147–149). For more on Hu Fayun’s novel see also Thornber (2014). China’s controversial response to the sars epidemic is criticized in films such as director Wang Jing’s (王竟) Daming jie (大明劫, Fall of the Ming, 2013).
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5 The United States – Indictments, Activism, Understanding
In the United States, President Ronald Reagan (1911–2004) did not speak of hiv/aids publicly until 1985. Instead, in 1983, his communications director
65 One major exception, discussed in Chapter 3, is Yan Lianke’s novel Dingzhuang meng (丁庄梦, Dream of Ding Village, 2006), on the 1990s blood plasma-selling scandal. This novel has been translated globally and also loosely adapted into a film ultimately named Zuiai (最爱, Love for Life, 2011), the first mainland Chinese film on the aids epidemic authorized by the Chinese government (Davison; Hanson 2019); see Qian for a detailed analysis of the film, its embrace of national allegory, and its relationship to Yan Lianke’s narrative. Also noteworthy is the anthology Ai: Zai xushu zhong lingting (爱─在叙述中聆听, Love: Listen While Telling, 2005), which features nearly three dozen Chinese writers and scholars including prominent literary figures Yan Lianke, Jia Pingwa (贾平凹, 1952–), Han Shaogong (韩少功, 1953–), and Wang Anyi (王安忆, 1954–). Yu Hua’s (余华,1960–) Xu Sanguan maixue ji (许三观卖血记, Chronicles of a Blood Merchant, lit. Chronicle of Xu Sanguan’s Blood-Selling, 1995) on rural blood-selling can be read as a prequel to the rural aids crisis. Rojas contrasts Yu Hua’s novel and Zhou Xiaowen’s (周晓文, 1954–) 1994 film Ermo (二嫫), also on rural blood selling, with Yan Lianke’s Dream of Ding Village, arguing that the former two “use a focus on blood-selling in order to critically examine the social ramifications of the infectious circulation not of an actual virus … but rather of a set of consumerist attitudes” (2015: 202–203). Other texts point to aids, without delving deeply into the disease itself. For instance, Ge Fei’s (格非, 1964–) Chunjin jiangnan (春尽江南, Southern Spring Played Out, 2012), the third volume in Ji- angnan sanbuqu (江南三部曲, Southlands Trilogy, 2004–2011), has an associate of the protagonist Duanwu driving through the countryside past garbage and aids prevention posters (Kinkley 2014: 107). Also of note is Wang Jinkang’s (王晋康, 1948–) Siji kong- huang (四级恐慌, Level-Four Panic, 2015), which centers on the precariousness of a world cured of smallpox but also mentions aids, Ebola, and other global diseases. This novel praises China’s efforts in infectious disease prevention, including aids, and la- ments that smallpox has not been addressed with similar rigor; it also claims that small- pox can suppress aids, and it speaks of the origins of aids in Africa. But Level-Four Panic does not address the lives of people currently living with hiv/aids in China. For more on Wang Jinkang’s novel, see Chapter 7. Two of the best known cases of East Asian censorship of literature on hiv/aids are those of the Singaporean playwrights Chay Yew’s (謝耀,1965–) Ten Little Indians (1988, rewritten as As If He Hears) and Eleanor Wong’s (王少研, 1962–) Jackson on a Jaunt (1988). These works were written to raise hiv/aids awareness, but the Ministry of Cul- tural Development objected to their portrayal of homosexuality as “a natural and accept- able form of sexuality … homosexuality is one of [aids’s] main causes. Homosexuality in Singapore is objectionable” (Ng 2017: 260).
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Patrick Buchanan (1938–) declared that aids is “nature’s revenge on gay men.”66 And when Reagan at last broke his silence, he directly contradicted a cdc advisory issued several weeks before that casual contact poses no risk of infection (Webber 2005).67 It was only in October 1986 that Surgeon General C. Everett Koop was authorized to speak about aids. His subsequent thirty-six- page “Surgeon General’s Report on Acquired Immune Deficiency Syndrome,” 20 million copies of which were sent to physicians, local governments, and schools, deplored the social stigmas surrounding the disease. As Koop wrote in the foreword: “At the beginning of the aids epidemic, many Americans had little sympathy for people with aids. The feeling was that somehow people from certain groups ‘deserved’ their illness. Let us put those feelings behind us. We are fighting a disease, not people” (1986: 6). Yet Koop also asserted, “aids is preventable. It can be controlled by changes in personal behavior. It is the responsibility of every citizen to be informed about aids and to exercise the appropriate preventive measures” (ibid.). Koop reassured the public that there was no danger in casual social contact. And, by making everyone responsible for educating themselves, Koop lessened to some extent the burden on those who were hiv-positive. At the same time, his proposed solutions did not address the daily realities of countless indi- viduals. The cause of aids is known, but this does not mean that the disease is always preventable for everyone. Not everyone can readily avoid risky situ- ations, and many people – particularly those who believe they are receiving “clean” blood, as well as individuals who trust that their sexual partner is both monogamous and has tested negative for hiv – are not even aware that they are exposing themselves to the virus. Many around the world do not, of course, have much choice. As the narrator of Zimbabwean writer Lutanga Shaba’s semi-autobiographical Secrets of a Woman’s Soul (2006) observes, “Abstinence was a luxury most poor women could not afford…. Most had a very narrow choice: to ‘open up’ or ‘pack up,’ presented with a choice of two stigmas, hiv within their marriage or divorce as the only way to stay healthy” (2006: 91).68
66 These sentiments were repeated by many who had a significant audience, including tel- evangelist Jerry Falwell (1933–2007), who proclaimed in 1983 that aids “is not just God’s punishment for homosexuals, it is God’s punishment for the society that tolerates homo- sexuals” (Back2Stonewall 2018). 67 In 2011, Larry Kramer claimed that since Reagan, every president has “said nothing and done nothing,” the exception being Barack Obama (1961–), who “says the right things and then doesn’t do them” (2011: 79). 68 Shaba was infected by her boss, with whom she was forced to have sex to keep her job. Stephanie Nolan likewise talks about the lack of choice on the part of rape survivors, as well as those whose lack of resources gives them little choice but to sell sex, stay with a
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The 1986 “Surgeon General’s Report on Acquired Immune Deficiency Syn- drome” was followed in May 1988 by the eight-page pamphlet “Understanding aids,” sent to all 107 million households in the United States and still the coun- try’s largest public health mailing. “Understanding aids” encourages people to talk openly about a subject that might make them uncomfortable but that could be a matter of life and death. The pamphlet also promotes compassion, stating, “No one will require more support and more love than your friend with aids. Feel free to offer what you can, without fear of becoming infected” (1988: 6). As with the “Surgeon General’s Report on Acquired Immune Deficiency Syndrome,” “Understanding aids” makes clear that bringing an end to the dis- ease is a shared responsibility. Koop proclaims on the front cover that “Stop- ping aids is up to you, your family and your loved ones” (1). And he states at the beginning that “Who you are has nothing to do with whether you are in danger of being infected.” But at the same time, he follows the latter comment with “What matters is what you do” (ibid.: 2). Koop declares on the cover page, “I encourage you to practice responsible behavior based on understanding and strong personal values.” Yet an individual is not always responsible for not practicing “responsible behaviors,” and statements such as Koop’s – which im- ply that people who have become infected with hiv have not behaved respon- sibly and have questionable morals – can be and often are used to condone social stigma. Through the 1980s, media images of aids patients and their phy- sicians supported these perceptions, with aids patients appearing to remain both the source and the victim of their own pollution (Gilman 1988: 262).69 Furthermore, broadcast television has been slow to include regular, lead char- acters who are hiv-positive.70
philandering husband, or leave their families and seek work far away from home (Nolan 2007: 11). 69 Gilman discusses parallels between the visual history of syphilis and that of aids, noting that the stigma of sexually transmitted disease is evident even in media sources support- ive of aids patients. He attributes this in no small part to the introduction in the 1940s of antibiotics to cure syphilis and other sexually transmitted diseases, which “left our cul- ture with a series of images of the mortally infected and infecting patient suffering a mor- ally repugnant disease but without a sufficiently powerful disease with which to associate these images” (1988: 248–262). Gilman likewise notes the persistence of American racist ideology, with the perceived source of the aids “pollution” shifted to black Africans and Haitians (ibid.: 263). See Griffin for more on visually based work and interventions. Paul Farmer (1992) exposes the prejudices and overt racism of North American scientists, em- ployers, landlords, and tourists vis-à-vis Haiti/Haitians and hiv/aids. 70 One exception is ER, which in its 1996–97 season featured the story of Jeanie Boulet, an African American woman working as a physician’s assistant who was infected by her husband.
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In contrast, American literature has tended to condemn and counter these stigmas, both social and internal, providing alternative discourses. Following a few years of stunned near silence in the United States, the mid- and late 1980s witnessed a profusion of texts on hiv/aids by gay and heterosexual authors alike. In particular, gay writers that decade produced
a diverse body of literature that documents, disrupts, testifies, protests, even celebrates. Its quality may be uneven but its authenticity, especially when its creators are men whose lives are in peril and whose communi- ties are under threat, can rarely be contested. And much of the literature of aids constitutes a feverish elegy, written collectively during the clos- ing decades of the twentieth century, to a generation dying young. nelson 1992: 371
This early American literature on hiv/aids was also distinctively activist, countering the “ignorance and confusion enforced by government and the dominant media” (Crimp 1988: 13). In particular, it tended to subvert the ex- plicit and implicit homophobia of other cultural discourses (Kruger 1996: 64).72 At the same time, it for the most part neglected hiv/aids patients of
71 For a summary of gay writing on aids, see Dean and Ruszczycky (2014). Elizabeth Cox’s Thanksgiving: An aids Journal (1990) is told from the perspective of a wife whose hus- band contracted aids from a secret affair with another man; Elizabeth had not known her husband Keith, who died in 1987, was gay until the diagnosis. The family keeps the condition as quiet as possible, given attitudes toward aids and gay men in the 1980s. Portrayals of heterosexual aids patients – for instance the eleven-year-old middle- class white girl of Alice Hoffman’s (1952–) At Risk (1988), who contracts aids through a blood transfusion – were often criticized for focusing on the “innocent victims.” But as Judith Pastore notes, such arguments miss the value of these texts in educating the gen- eral public about the disease (1992: 46). And, as discussed below, they reveal the ubiquity of stigma against hiv/aids. 72 Kruger (1996) examines how scientific, journalistic, and political discourses constructed aids as a disease of gay men. Other noteworthy sources include Murphy and Poirier (1993), who discuss the impact of hiv/aids on gay writers and their work; Nelson (1992), who explores the responses of mostly gay writers to hiv/aids and how they have used literature to articulate a resistant, activist consciousness; Roman (1998), who considers how gay men have used theater and performance to intervene in the aids crisis; Uribe (1993), who focuses on Venezuelan theater and aids; Albuquerque (2004), who examines how Brazilian theater enables Brazilian subaltern discourse; Brophy (2004), who explores testimonial writing from the United States, Australia, and Great Britain, pursuing how writers have blended polemic with mourning and memory; and Chambers (2004), who discusses writing on aids in conjunction with that on World War One and the Holocaust, arguing that it shares counterdenial, the rhetorical effect of haunting, in common with these genres. See also Wald, who discusses stigmatization in aids outbreak narratives,
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arguing, “Stigmatizing is a form of isolating and containing a problem, such as a devastat- ing epidemic. It is also a means of restoring agency … in the face of the utter banality of the foe” (2008: 226). American artist and writer David Wojnarowicz’s (1954–1992) Close to the Knives: A Memoir of Disintegration (1991) is a particularly striking early aids memoir. 73 The cdc Fact Sheet “hiv among African Americans” reported that this population ac- counts for nearly half of all those who have died from aids in the United States since the beginning of the epidemic (cdc Fact Sheet, 2019). As Randall Horton and his co-editors (2007) discuss in the introduction to the anthology Fingernails across the Chalk, a collec- tion of poetry and prose on hiv/aids from the African diaspora, much less scholarship has been written on the impact of hiv on those of African heritage across the diaspora. For exceptions see Dagmawi (2007, 2015). 74 An excellent example is the exhibition at the New York Historical Society “aids in New York: The First Five Years” (June 7–September 15, 2013), which was criticized for not mak- ing clear the “bitter, hard-fought battles that activists waged to gain treatment” (Ryan 2013: 4). Countering these silences are narratives such as Maggie Kneip’s Now Everyone Will Know (2015), which decries the low attendance at this exhibit (143–144) and describes her husband John’s surprise diagnosis of hiv/aids in 1990 and his death from the disease nine months later, in 1991. Given the deep prejudices toward persons with hiv/aids in the 1990s United States and determined to protect herself and her children from stigma, she concealed her husband’s disease: “This much was clear: no one could know…. It was true: no one could know. No one. I was in this alone” (68, 75). After John’s death, she “rolled up my sleeves and cleared every visible trace of him from our condo. I was done with him and done with aids” (113). She had her five-year-old daughter pinky-swear that when asked how her father had died, she was to say that she didn’t want to talk about it, or that he had died of cancer: “Never, under any circumstances, should she say aids” (119). 75 African Americans accounted for 43 percent of hiv diagnoses in 2017, despite being just 13 percent of the United States population, while Hispanics/Latinos accounted for 26 per- cent of hiv diagnoses, despite being 18 percent of the population (Centers for Disease Control and Prevention 2019a). Hurdles to receiving care are particularly severe in the American South (Flash 2019).
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These misunderstandings ensure that social stigmas remain powerful even for those who are being successfully treated and are symptomless. Chris Richey, co-founder of The Stigma Project (tsp, est. 2012), told a reporter that after be- ing diagnosed in 2010, he was “rejected by new boyfriends, turned away from two Los Angeles dentists, and suffered the dehumanizing experience of being used by an aids organization as an example of the consequences of reckless behavior.” His friend, co-founder Scott McPherson, told the same reporter that he was “disturbed over the countless acts of discrimination directed at those with hiv” (Dulin 2014).76 As announced on their Facebook page, tsp works not only to eradicate the disease but also “to eliminate the stigma of hiv & aids on a global scale.” tsp’s goal is eminently laudable, but throughout much of the world, social stigmas remain pervasive against people living with hiv/aids. To be sure, stigmas – both social and internal – are also deeply rooted in local cultural, social, and moral logics; specific forms of social and structural inequalities and violence; and understandings of how people are supposed to behave, of what is “normal.”77 But stigmas against people living with hiv/aids share much in common regionally and globally.78 As discussed in the following chapter, the global literatures of many societies – including China, Kenya, Tanzania, South Africa, and the United States – give particular insight into the fears these stig- mas engender and the devastation they wreak within and across borders. This literature highlights how essential moderating assumptions is to improving prevention and treatment of hiv/aids and countless other diseases, not to mention enabling the healing and promoting the wellbeing of so many.
76 In another striking example of the stigmatization of hiv-positive individuals in the Unit- ed States, in October 2017 Republican representative Dr. Betty Price, wife of former secre- tary of health and human services Tom Price, suggested that people with hiv should be quarantined, remarking, “It’s almost frightening the number of people who are living that are … carriers with the potential to spread … whereas in the past, they died more readily, and then at that point, they’re not posing a risk. So we’ve got a huge population posing a risk if they’re not in treatment.” Price later clarified that she did not support an actual quarantine (Jenkins 2017). 77 See Pfeiffer (2014: 142). Pfeiffer builds on the work of Castro and Farmer (2005), Parker and Aggleton (2003), Pescosolido et al. (2008), and Yang et al. (2007). 78 See, for instance, Annemarie Samuels’s discussion of “the paradox of seeing and not see- ing” hiv/aids in Aceh, Indonesia, where “attempts to make aids publicly visible in awareness-raising sessions, in fact, increase the taboo on aids and thereby its social and political invisibility, as people want to ‘see’ aids rather than ‘know’ about the disease or the affected persons” (2016: 105). Stodulka likewise discusses the severe hiv/aids stigmas in Indonesia, writing that even now some hospitals refuse to treat patients with hiv/aids; the virus is perceived as “immoral,” “not Javanese,” “Western,” and “other” (2017: 170–171).
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