Charissa Iluore ’17

Abstract

            Apartheid (1948-1994) led to the rigid stratification of South African society – dark skin versus fair, privileged against disadvantaged. These divisions had considerable implications within the mental health system, where white nurses confronted both the white and non-white mentally ill. In attempting to replicate apartheid policies of white supremacy and black disenfranchisement inside the institution, mental health workers resorted to sexually exploiting their already marginalized non-white patients. This abuse became even more damaging in the presence of HIV/AIDS, with the non-white mentally ill exposed to the virus as a result of their dual confinement within the hospital and within apartheid. On the other hand, the same combination of discrimination, sexual control, and illness also extended outside the mental institution to impact the gay community. In the end, while the HIV/AIDS epidemic that began during the apartheid era continues to shape contemporary South Africa, there is hope to halt its progress through sustained, multilevel interventions, including specialized clinics, anti-stigmatization campaigns, and preventative therapy.       

An Introduction to Separateness

“God forgives, I don’t, For the heart of Africa is bleeding, Bleeding from the wounds knifed hollow, Brutally knifed alone in the night.”

                                                            – Mzwakhe Mbuli[1], “The Spear Has Fallen”  

 

From 1948 to 1994, apartheid in South Africa sought to systematically divide an entire nation along racial lines, to assert the superiority of the Dutch-descended[2] Afrikaner people and burn the bridges of humanity that connected black and white, white and Coloured[3] (Clark & Worger, 2013). To be sure, racism existed in South Africa long before apartheid. White settlers fought relentlessly against the growing push for abolition during the colonial period, drafting a handful of “Native Acts”[4] to restrict the movement and land ownership rights of indigenous Africans (Clark & Worger, 2013). Apartheid served to further codify the idea of separateness by affirming government sanctioned discrimination and weaving racism into the tapestry of South African life (Clark & Worger, 2013). Existence came to be defined under one of four categories – white, Indian, Coloured, or black – with individuals receiving different protections based on group membership (Clark & Worger, 2013). Building on this division, the Reservation of Separate Amenities Act of 1953 dictated that public facilities could be designated for a particular race, thus permitting the segregation of buses, schools, and hospitals (Strous, 2003). Soon after, the government began to forcibly remove people from their communities and relocate them to racially homogenous neighborhoods (Clark & Worger, 2013). Blacks, in particular, lost their South African citizenship and instead became official residents of the “homelands”[5] in which they were placed (Clark & Worger, 2013).

Apartheid, then, was supposed to be an exercise in keeping the white Afrikaner from mingling with his “lesser” compatriots. Paradoxically, however, the exclusion of non-whites from mainstream society actually brought them into close and sustained contact with whites in one of the most important contexts: the mental health system. Caring for the non-white mentally ill obligated a staff of largely white mental health professionals to confront racial diversity in the workplace, even as the world outside the walls of the institution remained strictly separated by race[6]. In the midst of this apparent psychosis and racial disunion, the white medical staff saw themselves as bastions of civilization and progress, “like God[s]” to their patients (Lambley, 1980). This imbalance of power enabled clinicians to freely exploit those entrusted to their care. In the apartheid climate of sexual repression and regulation[7], this exploitation became an outlet for white frustration, often taking a sexual form, with the medical staff preying on their patients under the guise of therapy (Hoad, 2007; Lambley, 1980). White psychiatrists, socialized in separateness, had come to view their non-white patients as objects of racism, political and social disenfranchisement, and, ultimately, of sexual control (Jones, 2012; Strous, 2003). As such, they attempted to replicate apartheid structures within the framework of the mental hospital as a way to bring the real and institutional worlds into alignment.

This “environment of risk” took on even greater significance in 1982 when HIV first appeared in South Africa (Fourie & Meyer, 2010). Sexual encounters between staff and patients within the country’s mental institutions exposed both sides to the virus. Furthermore, conditions in the mental hospitals – especially in the black mental hospitals – were abysmal due to lack of proper training and funding (Jones, 2012). These sexually abusive, resource-poor institutions were clearly rife with HIV risk. Even so, the stigma surrounding HIV/AIDS prevented it from entering the national discourse in any meaningful capacity. The little narrative that did exist was crafted to suit the larger story of apartheid, reassuring the white public that the disease seemed to be limited to homosexuals, prostitutes, and drug users, populations that were depicted as far removed from Afrikaner life (Fourie & Meyer, 2010; Oppenheimer & Bayer 2007). Gay men, the first to experience the epidemic, were especially shamed, their sexuality labeled as indicative of mental illness (Fourie & Meyer, 2010). Though they were not formally institutionalized, gay South Africans came to occupy the “informal” mental institution, where stigma and persecution took the place of the asylum.

Framing HIV/AIDS as an illness of the marginalized and mentally ill exempted the government from intervening, a negligence that had devastating results. In 2002, less than a decade after the end of apartheid, HIV incidence in South African psychiatric hospitals was found to range from 9% to 29% (Cameron, 2009), whereas the national incidence hovered around 8.8% (Statistics South Africa, 2010). In 2015, the prevalence of HIV was believed to be between 22 and 48 percent among South African men who have sex with men, at least 2.8 percentage points higher than in the general population (HIV and AIDS in South Africa, 2016). These statistics are quite striking in the context of the official apartheid policies of confinement and abstinence that should have protected individuals in these contexts. Instead, it seems that the apartheid era combination of prejudice, risk, and inattention served to situate the mentally ill – and those perceived as mentally ill – directly in the crosshairs of HIV/AIDS.

Anatomy of the Argument: Linking Race, Mental Illness, HIV/AIDS, and Apartheid

            This paper will seek to expose the threads that connect apartheid era policies, the South African mental health apparatus, and the HIV/AIDS pandemic. Specifically, this essay will take a retrospective view on these issues, using literature on the history of institutionalization, sexual abuse, and social marginalization to inform its analysis of racial politics and homophobia in South Africa from 1948 to 1994. First, the influence of apartheid on the already physically[8] and ethically fragile mental health system will be explored, with special attention to racism, sexual decadence, and impunity in South Africa’s segregated mental institutions. Secondly, the impact of HIV/AIDS on the mentally ill will be examined through the lens of HIV/AIDS denialism, stigmatization, and other apartheid priorities. Next, the conceptualization of homosexuality as mental illness will be introduced to establish that the climate of discrimination, silence, and vulnerability found in mental hospitals extended to the “informal” mental institution. The paper will conclude by evaluating the future of HIV/AIDS in South Africa and proposing interventions to target the disease among the gay[9] and mentally ill.

 

 

 Mental Illness in the Age of Apartheid

“This brings us finally to the last, and the most subtle, enemy – the resistance to change inherent in African cultures, and the antithesis between the requirements of African and western community life.”

                                    – Simon Biesheuvel[10], “Tropical Africa’s Response to Civilisation”

           

Psychiatric practice in South Africa emerged from a desire to understand “the African mind”, to reveal its primitive mysteries so that the subjugation of the African could be made complete (Jones, 2012; Long, 2014). Instead of being used to heal, psychology was deployed as a weapon of imperialism, with foreign scholars and ethnopsychiatrists substituting for genuine health care providers (Jones, 2012; Long, 2014). In 1951 – three years after the inauguration of apartheid – one of these ethnopsychiatrists, John Carothers, asserted that “Africans did not use their frontal lobes” (Long, 2014). This dogma of racial inferiority effectively justified the brutality of apartheid. After all, there was no need to extend human rights to native Africans if they were seen as little better than common savages. The non-white “insane”, accordingly, were painted as criminals and branded with more severe diagnoses – including schizophrenia, epilepsy, and paranoia – than their white counterparts (Jones, 2012). In the face of their alleged uncontrollable, incurable madness, the black, Coloured, and Indian mentally ill were sentenced to lengthy or even permanent institutionalization (Jones, 2012; Lambley, 1980). However, behind the gates of the mental hospital, they would find no reprieve.

Violence, mistreatment, and anguish were common features of the apartheid mental institution. Sexual liaisons between patients and staff were well-documented, with nurses prostituting the mentally ill to their fellow health workers (Lambley, 1980). This culture of sexual exploitation was facilitated by languishing government oversight and capital as the state turned its attention to carrying out the ambitious work of apartheid (Pheko, 1984).  In the absence of sufficient funding, hospitals mainly recruited white, male ex-soldiers to staff their wards (Jones, 2012). These battle-hardened “nurses” were ill-equipped to confront life in the asylum, untrained as they were in the art of therapy and managing mental illness (Jones, 2012). To add to this dilemma, few would agree to work in the isolated, rundown conditions that characterized the mental institutions, leaving many hospitals woefully understaffed (Jones, 2012). In many ways, these doctors and nurses were facing the very personification of what apartheid had depicted non-whiteness to be – primitive, violent, and deranged (Long, 2014). Some patients, unaccustomed to intimate contact with whiteness, did in fact react with rage and sadness, thereby reinforcing those stereotypes (Lambley, 1980). Unsupported by a government that was supposed to be dedicated to their progress and brought into unflinching contact with dark skin and disordered minds, white mental health workers lashed out against their patients. In attempting to moderate the chaos of the asylum, white nurses turned to the tools of oppression with which they were most familiar: the tools of apartheid.

For almost 50 years, the apartheid state strived to ensure the primacy of the Afrikaner race (Clark & Worger, 2013). It concerned itself with preserving Afrikaner customs, bolstering the Afrikaner population, and eliminating any opposition (Clark & Worger, 2013). That mission brought the sexual lives of all South Africans under the government’s purview. To create an Afrikaner majority, the procreation of the Afrikaner had to be encouraged. To silence the non-white masses, their reproduction had to be regulated. As such, non-white sexuality, particularly non-white male sexuality, was portrayed as dangerous and promiscuous, an imminent threat to the virginal white female (Jones, 2012). Moreover, mentally ill women and women receiving public welfare could be institutionalized upon giving birth to a child out of wedlock (Jones, 2012). Even unwed white mothers were subject to this fate, their supposedly irresponsible and expensive reproduction negating their whiteness (Jones, 2012). The supposed inability or unwillingness of a poor woman to control her fertility supplied the perfect pretext for the apartheid government to step in to reestablish its carefully conceived myth of Afrikaner chastity and economic self-sufficiency. Ultimately, eugenicist anxieties that procreation of the feebleminded would dilute Afrikaner purity validated sexual repression of the mentally ill even outside the asylum (Jones, 2012).

Inside the South African mental institution, white providers sought to control the mentally ill by inserting themselves into – or removing themselves from – their patients’ sexual lives. Abuse of the mentally ill became one of the ways medical providers consolidated their power, challenged predominant sexual norms, and mitigated the difference between apartheid inside and outside the mental health establishment. As a result of their discomfort with mental illness and non-whiteness, the largely untrained nursing staff occasionally relied on patients to control one another, using tractable patients to restrain problem cases through brute force and sexual assault (Lambley, 1980). Additionally, nurses would turn a blind eye to what they perceived as consensual[11] relationships among the mentally ill or between the mentally ill and staff, even though such interactions were prohibited (Lambley, 1980). Though efforts were made to prevent sexual relations between staff and patients, in the era of apartheid, such attempts essentially granted white providers the opportunity to abuse, while further marginalizing the few non-white staff. For example, the Mental Disorders Act of 1944 explicitly barred any male staff member from being alone with a female patient, unless in the case of an emergency. This “emergency exception” allowed white male staff to attend to female patients by themselves during a mental health crisis; on the other hand, if a non-white male provider had to see a female patient, a white nurse had to be present (Jones, 2012). Thus, while the Act attempted to “save” patients from the clutches of a purportedly oversexed non-white male staff – only allowing non-white males in the room when a white staffer was around – it failed to place concrete boundaries on the relationship between white staff and their patients in urgent situations (Long, 2014). Lone white male providers could essentially walk into any female patient’s room under the guise of treating a mental health emergency. For the most part, the Act only succeeded in barring non-white providers from caring for their generally non-white female charges, thereby robbing these patients of the chance to connect with people who could empathize with their racial oppression and take seriously their concerns.

Continuing the pattern of cruelty, overcrowding in the asylums often pushed non-white mental patients into empty offices, garages, and jails, or onto street corners (Jones, 2012). In the midst of apartheid, the government balked at the idea of spending more on state mental institutions, preferring to send non-white overflow patients back to their homelands or to private firms such as Smith-Mitchell and Company (Jones, 2012). However, both these alternatives suffered from the same resource poverty and disorganization found in larger hospitals, with patients in the private facilities having to wait in line naked to use communal outdoor showers, where they could be molested by staff or other patients (Jones, 2012). Tragically, the mentally ill were especially vulnerable to this sexual predation: mental illness – particularly depression, mania, and early schizophrenia (Kaplan & Herman, 1994) – can increase susceptibility to sexual abuse and risk (Collins et al., 2006). Furthermore, poverty, homelessness, and alienation from supportive social networks create environments in which sexual victimization can thrive (Collins et al., 2006; Kaplan & Herman, 1994). Apartheid South Africa had produced exactly such a context for the mentally ill, restricting the labor market and transferring the ill from their social and geographic communities into hospitals or homelands (Clark & Worger, 2013; Jones, 2012). Sexual risk was often amplified in the framework of the apartheid mental hospital as patients turned to intimacy to cope with feelings of oppression (Jones, 2012). Furthermore, white therapists – unfamiliar with the experience of marginalization and unsympathetic to their patients’ suffering – were often ineffective counselors (Lambley, 1980). The institutionalized mentally ill, unable to derive support from their supposed caregivers, tried to escape, sometimes trading sex for freedom (Lambley, 1980). Thus, ironically, treatment could often serve to expose the mentally ill to sexually transmitted disease. It was this climate of deprivation and abuse that would eventually render the mentally ill vulnerable to HIV/AIDS.

A Losing Battle: Apartheid Priorities versus HIV/AIDS

 

“When will the day come that our dignity will be fully restored, when the purpose of our lives will no longer be merely to survive until the sun rises tomorrow!”

– Thabo Mbeki, ANC leader and President of South Africa (1999 – 2008) (Mngomezulu, 2013)

 

            During apartheid, the ruling National Party government in South Africa was bent on maintaining unequal resource distribution, international isolationism, and racial division. As such, when HIV/AIDS hit the country in 1982, the social and political cohesion required to battle the disease was absent (Hoad et al., 2005).  While AIDS was first identified in 1981, the South African government did not mobilize a comprehensive response until 1992 – a full 11 years later (Fassin, 2007). In the meantime, politicians relied on repressive legislation to control the disease threat. Laws criminalizing sex work, homosexuality, and interracial sex drove those already at the fringes of society, those most at risk, further into the shadows (Hoad et al., 2005). For some time, official policy was to quarantine suspected HIV cases, amplifying the stigma, fear, and misinformation surrounding the epidemic (Read et al., 2006).

Additionally, the state shunned authentic educational interventions that sought to reduce sexually risky behavior in favor of biomedical approaches utterly ignorant of the social determinants of health (Fassin, 2007). Under apartheid, South Africa busied itself with establishing different organizations and committees – the AIDS Advisory Group (AAG) in 1985 and the AIDS Virus Research Unit (AVRU) in 1987 – focused on pinpointing whom the virus was infecting, rather than on developing ways to prevent the disease’s spread (Fassin, 2007). Finally, in 1992, the National AIDS Research Programme was created to investigate the sociopolitical factors, such as income level and access to HIV counseling, which predisposed South Africans to HIV/AIDS (Fassin, 2007). By then, anti-apartheid representatives of the African National Congress (ANC) had been pushing for action for years, formalizing their outcry in the 1990 Maputo Statement, a document recognizing the desperate need for enlightened HIV prevention in South Africa and throughout the African continent (Schneider & Stein, 2001). This impassioned plea, coming as it did from black and brown voices, did little to sway the priorities of the pro-Afrikaner state. To the contrary, there is evidence that conservatives embraced HIV/AIDS as a way to make “the black population…a minority” so that white supremacy could proceed unchallenged (Schneider & Stein, 2001). Even after the rise of the ANC, this legacy of apartheid rhetoric haunted intervention efforts.

For many in the black South African community, HIV/AIDS represented a genocidal attempt to prevent them from having sex and therefore from having children (Fourie & Meyer, 2010): AIDS was the “Afrikaner Invention to Deprive [them] of Sex” (Lindauer 2003). HIV/AIDS denialism also became a way to dispute typically white scientific hegemony in favor of “African solutions” (Fourie & Meyer, 2010). After all, the narrative constructed by the West, which implicated Africans in “the original transmission of HIV from African animals to humans”, was reminiscent of apartheid era notions of Africans as a primitive people who communed with beasts (Lindauer, 2003). South African president, Thabo Mbeki, in an attempt to counter what he saw as a resurgence of racialized science, proposed that the poverty, malnutrition, and separation caused by apartheid and Western exploitation were instead responsible for the epidemic (Fassin, 2007; Fourie & Meyer, 2010). Of course, to some extent, Mbeki was right: living with isolation and sexual abuse had put non-white South Africans at greater risk of acquiring the virus. Where he went wrong was in rejecting the essential science of HIV, denying that HIV led to AIDS and dismissing antiretrovirals (ARVs) as a Western plot to kill black South Africans (Fourie & Meyer, 2010). In his zeal to avoid separateness, to prevent the revival of apartheid era segregation and blame as in past outbreaks[12], Mbeki ended up strengthening stereotypes about black ignorance and fear of technology (Fassin, 2007).

For the mentally ill, the South African strategy of inaction, stigmatization, and denialism did not bode well. Common mental disorders such as depression, post-traumatic stress disorder, and substance abuse were already associated with high risk sexual behavior and sexually transmitted disease (Collins et al., 2006). In the setting of the crumbling, sexually volatile mental health institution, these vulnerabilities were magnified many times over. Unsanitary conditions inside the mental hospitals compromised the immune systems of patients, while unprotected sex with multiple partners – whether with medical staff or other patients – made the mentally ill easy targets for HIV/AIDS (Lambley, 1980). The social isolation that patients experienced in these institutions, within an already segregated society, further increased their susceptibility to sexual coercion (Collins et al., 2006). Moreover, the absence of ARVs, reliable HIV testing, and medical knowledge about the virus meant that the mentally ill could not receive treatment even while living in a medicalized environment (Fassin, 2007).

As deeply flawed HIV/AIDS responses at the structural and institutional levels exposed mental patients to the virus, cultural silences around sex and mental health kept the mentally ill from knowing that they could be infected (Fassin, 2007). As one South African female psychiatric nurse explained, “[w]e don’t like people to know we have sex. We want to be moral” (Collins, 2001). Accordingly, both sex and mental illness are viewed as taboo subjects in South Africa’s socially conservative landscape (Collins, 2001). While similar societal and religious norms stifle open dialogue about these topics in many other contexts, in South Africa, where apartheid, institutionalization, and HIV/AIDS figure prominently, this dialogue – or lack thereof – takes on even greater importance. The mentally ill, trapped behind the walls of the hospital, often have nowhere to turn but to their healthcare providers for information about sex and reproduction (Swartz & MacGregor, 2002). However, as still fully part of a society that celebrates chastity, medical staff are reluctant to enter into these conversations with their clients (Swartz & MacGregor, 2002). As such, the mentally ill are commonly excluded from sexual education and HIV/AIDS prevention programs (Collins, 2001). The number of mental patients sexually assaulted, either by providers or fellow patients, in South African hospitals is still unknown, as patients hesitate to report the abuse and break the oath of silence[13] (Jones, 2012).

Apartheid prejudices also colored the way providers viewed their patients as actors in sexual relationships. Some nurses believed that the mentally ill were uncontrollably wanton, so much so that they continued to engage in risky sex even while cognizant of the threat of HIV/AIDS (Collins, 2001). At the other end of the spectrum, patients appeared to be too disconnected from reality to even contemplate sexual desire (Collins, 2001). These conflicting perspectives made it impossible to organize a concerted response to HIV in the mental hospitals. Additionally, if the sexuality of patients was publically acknowledged, it was usually with respect to reproduction rather than sexual health (Swartz & MacGregor, 2002). Patients were discouraged from having children; however, condoms – contraceptives that would protect against both pregnancy and HIV – were never widely available in apartheid mental institutions (Collins, 2001). Such prophylaxis would have cost money, money that the apartheid government had no interest in spending on what it considered an “expendable population” (Fourie & Meyer, 2010).                                                                            Instead, the state focused on passing mental health legislation to control sexuality within the institution, legislation which, in the end, did little to truly protect patients. The Mental Health Act No. 18 of 1973, for example, decreed that “any person who has carnal intercourse with [an institutionalized] female shall be guilty of an offence,” regardless of whether the woman has given consent (Jones, 2012). Regrettably, however, many facilities took the Act to mean that distribution of condoms and discourse around safe sexual practices was also forbidden (Jones, 2012).These ineffectual policies combined with stigma made the HIV positive mentally ill reluctant to seek medical attention, therefore putting them at greater risk for complications and transition to AIDS (Collins, 2001).. To add insult to injury, the progression of HIV has also been shown to have psychological effects – a devastating fact for those already struggling with mental disorder (Myer et al., 2008).

Homosexuality, Blame, and HIV/AIDS

“Why should I be bothered about white gay males whose disease was related to their homosexuality? It seemed so distant from my own interest. And we had so many big battles to fight, that I had absolutely no interest in it, none whatsoever. It just seemed to be a problem of gay men.”

–  Jerry Coovadia, anti-apartheid activist (Oppenheimer & Bayer, 2007)

 

In 1982, two white male stewards working under South African Air presented to hospital in Pretoria, afflicted with a strange series of illnesses usually reserved for the old and immunocompromised, not men in the prime of their lives (Oppenheimer & Bayer, 2007). Though they both died soon after admission, the virus they carried would continue to shape South Africa for years to come (Oppenheimer & Bayer, 2007). The South African HIV/AIDS epidemic initially unfolded among gay men in Cape Town and Johannesburg, two of the country’s most populous cities (Oppenheimer & Bayer, 2007). Even so, the apartheid regime largely ignored the outbreak, as it was confined to a group that did not fit within the state’s hetero-patriarchal ideal. Indeed, in 1968, the government legislated its disapproval of the gay community by revising the existing Immorality Amendment Act of 1957 to mandate jail time for people accused of “homosexual acts” (Jones, 2012). Activists, in a misguided plan to win public sympathy for the gay minority, had then rushed to instead frame homosexuality as a mental disorder[14] deserving of treatment rather than imprisonment (Jones, 2012). In so doing, they further stigmatized the gay community by tying its members to the mentally ill and the notions of uncontrolled sexuality and depravity that accompanied mental illness (Read et al., 2006). Gay men grew to be part of the “informal” mental institution: while they were generally not confined in mental hospitals, they sometimes found themselves locked behind the bars of prison cells and treated as subjects of public ridicule and psychoanalysis. As a result, the gay South African and the South African mental patient, despite experiencing very different levels of agency, have much in common in terms of marginalization and HIV risk.

During apartheid, to be gay meant – and often still means – to be persecuted. Police launched frequent raids on businesses and residences suspected of hosting or housing homosexuals (Jones, 2012). A “homosexual”[15] in the framework of apartheid South Africa included anyone who violated the procreative heterosexual mandate: cross dressers, hermaphrodites, bisexuals, and transgender people (Reddy & Louw, 2002). In this taxonomy, pedophiles were lumped together with gay men. As a result of the accompanying stigma, gay men were unable to speak out about the epidemic that was killing them and were cut off from the very services that would save them.

This pattern of repression and silence in the gay community was exceptionally similar to the one that disadvantaged the mentally ill. The concept of “dual taboo”, the combination of sexuality and mental illness that defined the South African mental patient, also affected the South African homosexual who, for all intents and purposes, was considered mad by his compatriots (Collins, 2001). Both the mental patient and the homosexual were not only alienated from the core of South African society, but also estranged from their families as a result of their real and perceived illnesses. As in the case of the mentally ill, this isolation drove the sexual exploitation of gay men, ultimately exposing them to HIV at high rates (Collins et al., 2006).

The situation was especially trying for black gay men whose sexuality was viewed as threatening and deviant both during and after apartheid (Reddy & Louw, 2002). To many South Africans – including those in the anti-apartheid movement – white homosexuality could be explained as an export of European immorality and overindulgence, another failure of the colonial legacy (Oppenheimer & Bayer, 2007). Homosexuality among native-born black South African men, on the contrary, was perceived as inexplicable or non-existent (Oppenheimer & Bayer, 2007). As such, anti-apartheid activists purposefully ignored[16] the spread of HIV in the gay community because they assumed it to exclusively affect white men (Oppenheimer & Bayer, 2007). This assumption was certainly not true: black migrant workers were known to partake in sex with fellow male laborers while away from home, thus exposing themselves to multiple partners and increasing their HIV risk (Reddy & Louw, 2002). To a certain point, these casual relationships were encouraged by white managers who, somewhat strangely, believed that by allowing sex within the strict boundaries of the workplace, they would be able to manage their largely black labor force (Reddy & Louw, 2002). Such ideas, yet again, resonated with the efforts of white mental health workers to exercise control over their non-white patients.

Gay men also engaged in self-stigmatization within their own communities; the HIV/AIDS scare made them wary of each other and of foreign men who were accused of bringing the disease to South Africa (Oppenheimer & Bayer, 2007; Sorsdahl et al., 2010). Additionally, the state’s tight policing of HIV knowledge and response kept the gay and the mentally ill in the dark about the extent of the epidemic and the ways in which the virus was transmitted (Fassin, 2007). Furthermore, when antiretroviral therapy finally made its appearance in South Africa in 1987, it was too expensive to distribute in large quantities (Oppenheimer & Bayer, 2007). Preference was given to rich patients who could afford the drugs and hemophiliacs who were viewed as blameless victims of the epidemic (Oppenheimer & Bayer, 2007). All other groups, including the poor, the gay, and the mentally ill, went without proper treatment (Oppenheimer & Bayer, 2007). The gay population as a whole typically experienced worse HIV/AIDS prognoses than their heterosexual counterparts as a result (Pantalone et al., 2014). By the time many of them made it to hospital, the disease had already progressed to the point where multiple comorbid conditions were present (Pantalone et al., 2014). In the early years of the epidemic, some may not even have known the name of the virus that was killing them.

Conclusions: The Future of the Epidemic and Potential Interventions

 

“This sickness, it comes from the white man, because 99 percent of blacks have got it while 1 percent of whites have got it… It’s like the white man did it, it’s like they want to get rid of us. So that the place can belong to them again, since they say it is their [fatherland]…”

  • – Black South African woman dying of AIDS (Fassin, 2007)

 

In 1948, the National Party government swept away human rights for most of the South African population with the creation of apartheid (Strous, 2003). In a context where the rights of black, Coloured, and Indian people had long been under siege, the reality of apartheid had enormous consequences. For the most marginalized, life under apartheid was a life of great separateness – separateness from resources and from the rest of humanity. Seclusion in homelands redolent with poverty and underdevelopment generally limited non-whites to manual labor and unskilled work, while their white counterparts enjoyed typically white collar professions in government, banking, and medicine (Clark & Worger, 2013). Thus, black, Coloured, and Indian people, sickened by their destructive surroundings, were often attended by the white doctors and nurses complicit in their subjugation (Pheko, 1984). This phenomenon was particularly problematic in South Africa’s mental health system where apartheid segregation met institutional confinement and both clashed with the patient’s entrapment in his or her own mind.

In the mental health institution, severe overcrowding and poor infrastructure made healing impossible. Tepid political will to fix the situation was only mobilized in 1960, after a former mental patient assassinated Prime Minister H. F. Verwoerd on the floor of the South African Parliament (Jones, 2012). Even so, the apartheid state still preferred sending black overflow patients back to their homelands rather than paying to house them in government institutions (Jones, 2012).  Homelands, however, were also poorly maintained during apartheid. The original plan to develop the homelands called for £25,000,000 over the course of the first 5 years; the government invested £7,900,000[17] (Pheko, 1984). Thus, conditions in the homelands precluded any follow-up or community-centric care for patients (Jones, 2012). Staying in the institution, on the other hand, meant that the mentally ill were exposed to sexual abuse at the hands of a white staff attempting to recreate apartheid within the mental health system (Lambley, 1980). Meanwhile, 1976 legislation made “[publish]ing ‘false’ information concerning the ‘detention, treatment, behavior, or experience’ in any mental institution” illegal, further limiting the ability of the mentally ill to report their mistreatment (Jones, 2012; Lambley, 1980). Prolonged sexual abuse in the mental health system ultimately made patients susceptible to HIV, giving the virus an entry point to carry out its work of suffering and death.

In the apartheid era, HIV/AIDS was construed as a disease that only affected the morally degenerate, the black and homosexual masses as they were imagined by the National Party (Fassin, 2007). Even when it became clear that the virus had found its way into the white population, the narrative still portrayed HIV acquisition differently between whites and non-whites. Infected whites led sexually “liberated” lives, while non-whites were promiscuous troublemakers who had brought death upon themselves (Fassin, 2007).  Post-apartheid, HIV/AIDS was seen by the black community and by members of the incoming ANC as a disease created by the white man (Fassin, 2007; Schneider & Stein, 2001). For the ANC, the white man’s crime lay in subjecting non-whites to destitution and tyranny during apartheid, as it was out of that dispossession that HIV was born (Fassin, 2007). However, in trying to take apartheid to task for creating the social conditions in which illness could flourish, the ANC sidestepped the actual science, restricting access to ARVs and other life-saving measures as a consequence (Fassin, 2007).

While the HIV/AIDS epidemic in South Africa was first described among gay men, their voices were largely absent from the political discourse surrounding the disease (Schneider & Stein, 2001). Denounced as criminal and mentally ill, gay men in South Africa were made insignificant by their inability to adhere to heterosexual social customs (Schneider & Stein, 2001). Their membership in the “informal” mental institution aligned them with patients in the formal mental health system as both groups navigated their shared diagnosis of mental illness as well as their stigmatized status, subjugation, and vulnerability to HIV/AIDS. Both populations likewise shared the unfortunate fate of worsened HIV/AIDS disease trajectories; for many, the virus was essentially a death sentence (Collins et al., 2006; Pantalone et al., 2014). Though the apartheid state did not consider them to be, these deaths were tragedies, losses that could have been prevented through medical care and human compassion. The partners and children that these dead left behind suffered economically, socially, and emotionally: AIDS orphans are often at risk for psychological disorders like depression and for the HIV/AIDS virus that took their parents (Smit et al., 2006). This cycle of illness has propelled high rates of HIV in South Africa. In 2014, 20 years after apartheid, 19% of South African adults above the age of 15 were HIV positive (UNAIDS South Africa, 2014). By the year 2020, both HIV/AIDS and mental illness are projected to enter the ten most common causes of chronic ill-health in the developing world (Myer et al., 2008).

Clearly, thoughtful interventions, cognizant of both social determinants of health and advances in science, are needed to combat this multifaceted epidemic. Specifically, poverty, stigma, and lack of knowledge play a monumental role in impeding HIV/AIDS treatment for the gay and mentally ill (Hobkirk et al., 2015; Evans et al., 2016). These factors act on different levels to produce negative disease outcomes in these vulnerable populations: intrapersonal level determinants such as self-stigmatization and genetics can have enormous influence on the prognosis of an individual, while interpersonal level variables, including power dynamics within intimate partnerships and between neighbors, can impact whole communities (Cook et al., 2014). Lastly, at the uppermost level, structural forces serve to extend legislation and social policies to millions of mentally ill and LGBTQ+ people across South Africa (Cook et al., 2014). In order to radically reduce HIV acquisition and AIDS mortality in the gay and mentally ill populations, aid organizations and the South African government must strive to address factors at each of these different levels. To that end, this paper will highlight ongoing research and suggest multilevel interventions to combat the HIV/AIDS epidemic among people suffering from mental illness and among members of the LGBTQ+ family.

An estimated 26.5 percent of patients with mental illness in South Africa also suffer from HIV, as compared to the HIV prevalence of about 19 percent in the general population (Jonsson et al., 2011). The disproportionate impact of HIV on South Africa’s mental patients is fueled by structural level poverty and biases within the national health system, interpersonal level misunderstandings between practitioners and patients, and intrapersonal patient non-adherence and provider doubts about the safety of combining antiretroviral and antipsychotic drugs (Jonsson et al., 2011). Though persons living with mental illness are considered to be at high risk for contracting HIV, the South African health apparatus tends to deliberately neglect this population due to the belief that these patients are unable to adhere to any sort of treatment (Jonsson et al., 2011). Undeniably, people with mental illness are sometimes lost to follow-up; however, this sudden discontinuation of care is not a quality that can be attributed solely to their mental state (Wagner et al., 2014). A recent study conducted at a Johannesburg HIV clinic among patients with severe mental illness revealed that lack of transportation, conflicts with work or school, and confusion about return appointments influenced the frequency of follow-up (Wagner et al., 2014).

Luthando Neuropsychiatric HIV Clinic in Soweto seeks to correct these barriers to treatment by establishing a facility closer to their patients’ homes and by leading adherence classes to bolster patient compliance (Jonsson et al., 2011). The Luthando Clinic also manages to streamline care by providing mental health counseling, antiretroviral therapy, and tuberculosis drugs[18] to its patients in a centralized location under the supervision of a single medical team (Jonsson et al., 2011). This integration of treatment likely reduces some of the confusion and time expenditure associated with non-adherence in these patients and counters the prevailing sentiment that antiretrovirals cause irreparable harm to those on psychiatric medications. Moreover, the clinic offers group therapy in the form of gardening and craft making with the hope of improving individual client behavior and economic self-sufficiency through the sale of food and beaded items. Soweto residents are mainly poor and black, a testament to the enduring legacy of apartheid (Jonsson et al., 2011); thus, the small profit patients are able to generate from their work in the clinic is especially valuable and empowering. Overall, the clinic uses income creation and proximity to its patients, coordinated care, and extensive training to correct structural disenfranchisement of patients, interpersonal confusion within provider-patient relationships, and intrapersonal conflicts about compliance and drug interactions.

For all the good it does, though, Luthando is limited by its small staff and its emphasis on treatment rather than prevention. The clinic employs only two psychiatrists, two nurses, and one medical officer who, incredibly, see about 100 patients during the three days a week that the clinic is open (Jonsson et al., 2011). The success of the program certainly merits increased funding, hours, and staff. Additional money, time, and manpower could serve to educate patients on safer sex methods and pre-exposure prophylaxis (PrEP) and post-exposure prophylaxis (PEP), therefore helping to limit new HIV cases among this high risk population.

The Luthando Clinic and similar interventions demonstrate that patients with mental illness and HIV are far from impossible to treat, that they should be accorded proper significance within the state’s HIV/AIDS eradication agenda (Jonsson et al., 2011; Senn & Carey, 2009). Since adherence rates among these patients are comparable to those seen in other HIV positive populations, there is no justification for withholding treatment based on fear of non-compliance (Wagner et al., 2014). Nonetheless, attrition is high among HIV-infected groups, with 25 percent of patients being lost to follow-up (Wagner et al., 2014). Home visits with patients suffering from mental illness and HIV could be a solution to this problem, as researchers found that they were able to track even patients who discontinued care using this method (Wagner et al., 2014). However, this approach is exceptionally time-consuming and likely impractical given the constraints of resource-limited South Africa. To access the patient’s home sphere, activists should explore interventions that target interpersonal level relationships among family members (Kagee et al., 2014). A recent survey of the mothers of South African teens receiving mental health treatment showed that parents feared the potential of drug use, early pregnancy, and HIV infection in their children, but felt that they had little power to prevent these fears from coming to fruition (Kagee et al., 2014). Under these circumstances, family-based programs may be effective in developing parental agency and enhancing dialogue between adolescents with mental illness and their mothers about sexually risky behaviors (Kagee et al., 2014). Ultimately, opening the lines of communication could shield the next generation of South Africans against HIV/AIDS.

Another group with a substantial HIV/AIDS disease burden, men who have sex with men (MSM)[19] could also benefit from multilevel interventions that tackle structural criminalization of sex work, interpersonal homophobia, and intrapersonal “safe sex fatigue” (Evans et al., 2016; Hugo et al., 2016; Icard et al., 2015). While the prevalence of HIV among MSM varies widely across South Africa, there is evidence to suggest that rates are on the rise in the urban centers of Johannesburg, Cape Town, and Durban (HIV and AIDS in South Africa, 2016). Despite this, MSM may be hesitant to pursue treatment due to policies and social attitudes that oppose freedom of sexual expression (HIV and AIDS in South Africa, 2016). Sex work is illegal in South Africa, making it difficult for MSM who engage in the sex trade to come forward about their HIV diagnoses or ways protect themselves on the job (Evans et al., 2016). Research by the South African Commission for Gender Equality has provided compelling evidence that legalization of transactional sex in the country would restore dignity to sex workers by keeping them out of prison and by reducing their abuse at the hands of police and pimps (Commission for Gender Equality, 2013).  In light of these facts, this paper endorses the decriminalization of sex work as a way to remodel the structural conditions that promote high HIV rates among MSM sex workers.

Furthermore, homophobia is pervasive in South African society, with 72 percent of participants in one survey saying that same-sex activity was immoral (HIV and AIDS in South Africa, 2016). Thus, many MSM keep their sexual orientation secret and do not interface with programs intended to target their demographic (Icard et al., 2015). For example, men interviewed in East London and Port Elizabeth maintained that, decades after apartheid, black South Africans in their villages still believed that homosexuality was a white, Western invention (Icard et al., 2015). Black MSM, as a result, were reluctant to reveal themselves for fear of incurring the village’s censure (Icard et al., 2015). It would be important to confront the interpersonal shaming within these communities through interventions that push back against apartheid ideas about the incompatibility between homosexuality and black masculinity. As such, stigma reducing campaigns, shown to be effective in many other contexts ranging from healthcare workers in Thailand (Pudpong et al., 2014) to patients living with HIV in South Africa (French, Greeff & Watson, 2014), could be deployed to help change the perception of what it means to be gay and HIV positive, thereby enabling MSM to access the information and therapy they need.

Contemporary intrapersonal interventions have also relied on PrEP and PEP to ameliorate some of the risks MSM face. One study found that whereas condom use and post-exposure prophylaxis (PEP) were somewhat variable among MSM, pre-exposure prophylaxis (PrEP) seemed like a good alternative with 30 out of 40 participants stating that they would be willing to use PrEP (Hugo et al., 2016). Even in the absence of PrEP, the majority of MSM studied were able to fully complete their PEP – only about 10 percent missed more than one dose (Hugo et al., 2016). However, adherence to the PEP regimen did not change the frequency of sexually risky behavior in the study population (Hugo et al., 2016). Consequently, long term pre-exposure prophylaxis is still probably the better option (Hugo et al., 2016). At the same time, shortages of medication and personnel often make biomedical approaches to controlling the HIV/AIDS disease threat inadequate (Evans et al., 2016). As a result, the aforementioned structural reform focused on decriminalizing sex work and the Interpersonal interventions aimed at eliminating the stigma surrounding homosexuality are critical to compliment the intrapersonal level work done by PrEP and PEP.

While research on South African men who have sex with men seems to provide encouraging avenues for intervention, there are still major gaps in the literature concerning other identities represented by the South African LGBTQ+ community (Evans et al., 2016). Lesbians, bisexual women, and transgender populations have been mostly overlooked with regard to the HIV/AIDS epidemic; in fact, women who have sex with women (WSW) are not classified as at risk for HIV acquisition even though the virus can spread among women via vaginal fluids, breast milk, and menstrual blood (Evans et al., 2016). Without knowing that they may be vulnerable to HIV/AIDS, WSW may forgo safer sex practices and may not be informed about the various modes of disease transmission (Evans et al., 2016). In addition, WSW may engage in condomless sex with men and could be exposed to HIV by their male partners (Evans et al., 2016). Non-binary and transgender individuals could be similarly exposed through unprotected intercourse (Evans et al., 2016). Thus, this paper strongly advocates the more careful study these neglected populations in order to design interventions that reflect their unique experience of HIV/AIDS risk.

All of these proposals are realizable with sufficient advocacy, funding, and political will. The great separateness that fueled sickness in the midst of division is an undeniable feature of South Africa’s past; however, it does not have to become an inevitable part of the country’s future. There is, indeed, an opportunity to change the course of the HIV/AIDS epidemic. It is past time for South Africa to seize that opportunity and take bold steps towards uplifting its most disadvantaged people, towards healing the wounds of apartheid and sowing the seeds of unity.

 

 

 

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[1] Mbuli, also known as “The People’s Poet”, is a popular South African singer and protest icon. His song,“Now is the Time”, became the anthem of the 1994 elections, the first democratic elections in South Africa’s history and the first elections of the post-apartheid era (Christgau, 1998).

[2] Afrikaners are white South Africans who trace their ancestry to the Boers, Dutch farmers who settled in South Africa during the colonial period (Clark & Worger, 2013).

[3] During apartheid, “Coloured” referred to mixed race individuals with both European and African or Asian ancestry (Clark & Worger, 2013). This paper will use the term “Coloured” in line with that convention.

[4] For example, the Natives’ Land Act of 1913 prescribed that native South Africans could only own up to 7 percent of the country’s land (Clark & Worger, 2013).

[5] Also called Bantustans, homelands were established by the National Party as a means of removing the black South African population to rural areas of the country, saving the urban areas – the centers of social and political activity –  exclusively for whites (Butler, Rotberg & Adams,1978).

[6] During apartheid, patients in mental health facilities were segregated by race; however, white mental health care providers – and some non-white providers – could see patients of all races (Long, 2014).

[7] Many anti-miscegenation, anti-gay, and anti-prostitution laws (as well as other sexually discriminatory pieces of legislation) were passed during this period (Hoad et al., 2005; Hoad, 2007).

[8] Several hospitals collapsed due to disrepair and shoddy construction (Pheko, 1984).

[9]  The HIV/AIDS epidemic also had substantial impact on the community of men who have sex with men, a group which has a great deal of overlap with the gay community, but also includes straight and bisexual men (Evans et al., 2016). Other members belonging to the LGBTQ+ umbrella, including lesbians and queer and transgender individuals, also carry a disproportionate disease burden. While the majority of this paper will be dedicated to outlining the plight of gay men (as they constitute the segment of the LGBTQ+ community that has been studied in the most depth with regard to the South African epidemic), the suffering of other at-risk populations will be discussed in the conclusions and interventions section (Evans et al., 2016),.

[10] Professor Biesheuvel, prominent South African ethnopsychiatrist, attempted to measure so-called “African intelligence” and receptiveness to Western epistemology (McCulloch, 1995).

[11] Patients who are floridly psychotic or unaware of their surroundings or identity are not considered able to consent to sexual relationships (Reich, 1978).

[12] Previous tuberculosis and syphilis outbreaks had seen the non-white quarantined and segregated from the rest of society (Fassin, 2007).

[13] Many patients also did not report their sexual abuse for fear that they would not be believed (Lambley, 1980).

[14] While homosexuality was classified as an aberration of normal sexual behavior in the Diagnostic and Statistical Manual of Mental Disorders until 1973, it should now be recognized as a healthy manifestation of sexual expression (Silverstein, 2009).

[15] Though in apartheid South Africa, the term “homosexual” referred to any person who defied traditional gender and sexual norms, this paper will use “homosexual” to mean gay men, the group first impacted by the HIV/AIDS epidemic in South Africa (Reddy & Louw, 2002).

[16] The ignorance of the anti-apartheid movement to the issues affecting the gay community is particularly unfortunate as anti-apartheid activists, especially in the wake of the 1994 elections, had the power and moral zeal to truly improve conditions for their gay compatriots.

[17] Apartheid, as egregious as it was, represented only one of South Africa’s problems. The economic insecurity of the time also limited state spending and individual welfare (Pheko, 1984).

[18] In some parts of South Africa, about 70 percent of  tuberculosis patients are co-infected with HIV. Through their work, providers at the Luthando Clinic realized that many of their patients also suffered from tuberculosis and began a TB program to address the issue (Jonsson et al., 2011).

[19] The designation “men who have sex with men” was created to serve as a non-stigmatizing way to identify men of all sexual orientations who engage in sexual activity with other males (Evans et al., 2016).

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