Funeral Culture

AIDS, Work, and Cultural Change in an African Kingdom

Casey Golomski

• Publisher: Indiana University Press
• Year: 2018
• ISBN:
  9780253036483
• Topic: Social Sciences
• Subtopic: Customs & Traditions
• Index: Social Sciences

Contemporary forms of living and dying in Swaziland cannot be understood apart from the global HIV/AIDS pandemic, according to anthropologist Casey Golomski. In Africa's last absolute monarchy, the story of 15 years of global collaboration in treatment and intervention is also one of ordinary people facing the work of caring for the sick and dying and burying the dead. Golomski's ethnography shows how AIDS posed challenging questions about the value of life, culture, and materiality to drive new forms and practices for funerals. Many of these forms and practicesnewly catered funeral feasts, an expanded market for life insurance, and the kingdom's first crematoriumare now conspicuous across the landscape and culturally disruptive in a highly traditionalist setting. This powerful and original account details how these new matters of death, dying, and funerals have become entrenched in peoples' everyday lives and become part of a quest to create dignity in the wake of a devastating epidemic.

1Reckoning Life: Dying from AIDS to Living with HIV

THERE WAS ALWAYS work to do in the chiefdom of Madulini. If you did not get up by your alarm, crowing roosters or rustling cattle outside your bedroom window might wake you instead. Life at the Matimba family’s homestead there was busy. Two days after I first came to stay in 2011, we burned the remains of a cow that had died of an injury. When the family’s hired herder did not show up some mornings, we moved the nine remaining cattle, the family’s newly received bridewealth, a kilometer away to the community grazing area.¹ We took shovels to the iron-rich red earth, weeding a clearer path to the pit latrine. We helped their children with schoolwork. Two of us began working at faith-based non-governmental organizations (NGOs) that were running projects in the community. Nokwenza, the mother, tracked orphaned and vulnerable children (OVC)² sponsored by World Vision. I accompanied careworkers (banakekeli) from Shiselweni Reformed Church Home-Based Care (SHBC), a grassroots group aiding sick and dying neighbors. At the end of a day, with a cup of tea and typing notes, I was doing two kinds of work: one ethnographic and the other, for the Matimbas, to cooperatively “grow their home” (kukhuleka ekhaya). To not help in some way was not the most ethical thing to do.³

At the time I moved into their home, they were using a woodburning stove to cook. I boiled an egg on the stove one morning to eat before going out to do a round of interviews organized by my colleague the anthropologist Robin Root. That day, we were speaking with dozens of SHBC clients about their experiences with their careworkers, research that would later tell an incredible story of surviving HIV/AIDS in this community and beyond.⁴ Forgetfully, I left the egg in the pot. When I returned, I looked around the kitchen for it, but it was gone. It was of no regard to me that someone might have eaten it, but Nokwenza looked concerned when she saw me looking for it. Her daughter said that Nik took it; he was Vuyo’s sister’s son. “I will talk to him,” she said, annoyed.

Nik was thirty years old. His father was a traditionalist Dlamini, part of a family living the tenets of “Swazi Culture,” and Nik grew up with his mother, a Matimba, and her family at Madulini. Nik came back to live with the Matimbas because he had lost his job at a casino. He loved the work; it was rewarding, exciting, and cosmopolitan, characteristic of the independent life he wanted to live. But wanting to be free from others when they depend on you is a challenge. Earlier in life, Nik had gone to several secondary and technical schools but was kicked out of a few or did not complete the courses. Some family members told me he was careless. At Madulini, Nokwenza saw this pattern being clearly retraced. Nik slept a lot and seemed shifty and irritable to her. Twice in three months she called him out in front of others for not doing some kind of work: once over not herding cattle and another over not chopping firewood. He did clean his own living space—a round, single-room dwelling with a thatched roof, sometimes called kagogo.⁵ He mostly kept to himself when he wasn’t hanging out at one of the small shops in the community.

One morning I woke up to the sounds of shouting. It was Nokwenza and Nik. Nik had used some soap but had not yet brought it back to the main house for use in the kitchen. The egg incident had already agitated Nokwenza, and this last incident was all she could take. In the middle of the argument, she quickly called her husband, Vuyo, on the phone to say that Nik was being difficult. Telling Nik’s mother’s brother made Nik angry. Nokwenza accused him of being lazy and abusing their kindness. Leaving his ironing, Nik went to see her face-to-face in the kitchen. They swung at each other. “Don’t hit me,” he said. “You will regret it from the day you were born!” “What does that mean?” she retorted. “I won’t regret anything. You will regret all these terrible things you do and be judged from the moment you do it! You are a selfish person,” she ended, her eyes watering. As he left the house, he stammered that he had to leave this craziness behind him.

The craziness would become worse than a disreputable work ethic and spats with his mother’s people. We later learned Nik had been ill for some time. After a traumatic injury in 2014, he was diagnosed with a disease he identified only as “that thing,” one that disturbed him behaviorally and affected him physically. In his case, experiences of ailing from an undiagnosed illness and being workless for a while—in formal unemployment and not doing homestead chores—portended a kind of personal inertia. It was also a kind of social death amid others who expected him to lend a hand. Tandla tiyagezana—“hands wash each other” in mutual help—goes the customary siSwati saying.

The ability to work is often valued as foundational for human dignity and as a fundamental human right. Cross-culturally, ideations of work may focus more on work as an independent undertaking, whereas for others, productivity may be predicated more strongly on interdependence or mutuality. When a person is unable to work, regardless of whether it is his or her “fault” or the result of something beyond the person’s control, including HIV/AIDS, this change affects social relationships. Some may step in to care for a person when he or she becomes sick and cannot work. More dire circumstances are where families may give up their relations with sick people, abandoning them altogether. Alexander Tsai and colleagues (2013; 2017), for example, show how Kenyan people’s inability to work because of HIV/AIDS is a source of stigma—they are sometimes rendered “worthless.”⁶ In Swaziland, stigma may also derive from fear, misinformation, or caregivers reaching the limits of empathy in inhlitiyo lembi, a “hardened heart.” In cultural cases where the value of a working life is strong, one’s inability to get by on one’s own is a paragon of indignity. Being alone then cruelly compounds this.

I learned most about what it meant to live a disrupted or compromised life due to HIV/AIDS from people such as Nik and the careworkers and clients of SHBC in Madulini. There were many other groups like SHBC across Swaziland and sub-Saharan Africa with related, community-minded caregiving, educational, and development goals. I also met many people who worked for or used such programs. Their experiences of surviving HIV/AIDS and others’ deaths from it foreground human interpretive struggles to answer existential questions: What is the meaning of death? Can we die without suffering? If I am twenty, for example, what do I do knowing I am expected to live to age forty? Practically, surviving, understanding, and living with HIV/AIDS necessitated a kind of social work that was ongoing and, in the best cases, restorative from sufferable situations.

Robin Root tellingly used the term “reckoning” in her longitudinal study of the SHBC careworkers’ life-extending interventions, written with the organization’s founder, pastor and theologian Arnau van Wyngaard, and health economist Alan Whiteside (2015). Community member clients we spoke to on that day I forgot the boiled egg, along with more than fifty others in neighboring communities, made it clear that their careworkers shared with them an “unconditional love that restored [their] desire to live and adhere to treatment” (Root, van Wyngaard, and Whiteside 2014). Importantly, careworkers were informational and confidential as well as Christian, and they were as much spiritual as they were palliative. More than half the clients we spoke to told us they would have killed themselves or died without SHBC’s visitations.⁷

Calling this ongoing carework and its effects “reckoning” is powerful. It hearkens to care’s calculative, estimative actions pertaining to medication adherence—in other words, making sure that antiretroviral (ARV) medications are taken daily at the same time, at the right dose, and with proper food. Reckoning in this sense also refers to the ways people with varied education or health-related knowledge make sense of HIV/AIDS information such as disease epidemiology and population-level effects—what do such figures mean for people’s personal and families’ lives? The international scale-up of ARV distribution and treatment since the turn of the millennium has been transformative insofar as to suggest a prospective “end of AIDS” (Kenworthy, Thomann, and Parker 2017). No longer are the majority of people living with HIV dying from the opportunistic infections marking the onset of AIDS. Through ARVs as part of broader antiretroviral therapies (ARTs) and synergistic care interventions, overall life expectancy has increased as people live longer on medication.⁸ This recent history also involves major cultural changes globally for people’s perceptions of death, dying, and risk.

Still, medical anthropologist Eileen Moyer (2015) critically points out how such before-and-after depictions can overshadow the epidemic’s practical and conceptual continuities: AIDS and HIV are still treatable, but new treatments and programs are often envisioned on what is a receded horizon for populations in poorer countries. For example, preexposure prophylaxis (PReP), now relatively common for at-risk groups in the United States, is not yet widely available in Swaziland, and some people still do not have the means to access what treatment is available. These means are actually quite basic: food, time, money, and the ability to work, among others. These issues have not been fully abated in many places,⁹ yet as of 2017, Swaziland is actually leading the way in curbing new infections, a point I return to later. Future health and social work policy and interventions must be locally actionable and culturally specified to enable people to access medication.

Using the stories of Nik, Nokwenza, SHBC careworkers, and those of other HIV-related programs I worked with, this chapter traces a cultural history of reckoned life, loss, and dying in Swaziland’s HIV/AIDS epidemic. It does so in three parts: the first discusses the slow emergence of HIV/AIDS on the national landscape in the 1980s and many peoples’ resultant wasting from going untreated in the 1990s and early 2000s. In response to the public health crisis, communities, local and international NGOs, and the state mobilized social and pharmaceutical resources that strengthened culturally biomedical ideations of what a healthier life could be. Food, medication, and carework helped people avoid socially and physically dying from AIDS. Through these, life with HIV was thankfully extended but also portended new kinds of risks. Coming to terms with this kind of embodied experience of life at risk—a “life within limits” (Jackson 2011)—was hard work for many people, and situated as part of a longer postcolonial history and cultural production of death too.

The Age of AIDS

HIV/AIDS emerged in the kingdom in the 1980s and intensified over the next twenty years, to the point of society’s near disintegration. In 1982, two years after Nik was born, King Sobhuza II passed away as the world’s then longest-reigning monarch. It was a period characterized by silence, fear, and suspicion; they were dark times. The state ordered a national mourning period of sixty days as the death of the king brought sinyama on the nation. The state historian James S.M. Matsebula (1983, 66) documented prohibitions on plowing land; ritual haircuts for men, women, and children; and the adornment of woven-grass mourning strings. Educator Ellen Magongo (2009, 2) recalled how “the mood of the general populace changed quickly. . . . To my surprise such [mourning] requests were not optional but enforced by members of the police force who visited homes (mine included) and demanded that the dictates of the elders were carried out. While such acts amounted to an invasion of one’s privacy, they also seemed to portend the arrival of significant change in the kingdom.”¹⁰ Vuyo Matimba, who was eight years old, laughingly remembered seeing so many people with shaved-bald heads. Nokwenza, who was seven, remembered atmospheric silences when television and radio broadcasts were periodically suspended.

The next few years were politically fractious, with internecine feuds between clans and lines of the royal Dlamini house vying to appoint a new king.¹¹ In 1983, an interregnum royalist council, Liqoqo, publicly chose Makhosetive Dlamini, the son of Sobhuza II and Ntfombi Tfwala, to the surprise of many.¹² After returning to Swaziland from boarding school in Great Britain, Dlamini was installed as King Mswati III in April 1986. The ceremony at the National Stadium included dignitaries such as Mozambican president Samora Machel, Zambian president Kenneth Kaunda, and Maureen Reagan, daughter of American president Ronald Reagan. On the day of his coronation, Mswati promised to lead as king and be king by way of his citizens—nkhosi yinkhosi ngabantfu. In Swazi Culture, it is said the king and kingship are the embodiments of the nation itself.

A few months later, in October 1986, a delegation of doctors from South Africa arrived in the kingdom to diagnose what turned out to be its first case of AIDS in a patient identified as “West Indian.” Following up on the announcement, the Times of Swaziland ran a front-page headline on November 3 titled “AIDS Shockwave: More Could Have the Killer Virus” (Twala 1986) along with a smattering of misinformation about the disease¹³ (see fig. 1.1). A moral and practical panic grew, at a time when public health was otherwise steadily improving and mortality rates were down due to the expansion of health clinics (N. Simelane 1987). Here and globally in the 1980s, HIV/AIDS came to the fore in popular consciousness, representing a pernicious historical conjuncture of epidemiology and political economy that would drive the disease into almost every nation on earth. Pointing out its emergence in this political moment in Swaziland, writer Shaun Raviv (2015) notes, “Since the king is the lifeblood of the nation, it is appropriate that his reign began in 1986, the same year HIV arrived.” It would be almost twenty years before widespread ARV treatment slowly emerged, and thirty until the epidemic began to stabilize.

Some argue that Mswati’s policies, like those of other political leaders and global economic entities, operated as structural determinants that drove disease transmission.¹⁴ According to Jason Hickel (2012), for example, structural adjustment policies and broader market liberalization, abetted by the state in some ways, created a “neoliberal plague” of HIV/AIDS in Swaziland. In this critical perspective, a historically and economically underdeveloped postcolonial context laid the groundwork for high transmission.¹⁵ Regionally, social life is also patriarchal: women’s socioeconomic and physical vulnerabilities are pronounced, as men may often be violent in expressions of masculinity, shaping women’s greater risk for HIV...