If epidemiologists are correct, 33 million people throughout the world are living with an HIV/AIDS infection today. 96% of these live in the “developing” world. This is a stunning statistic. 96% is a number that ought to interrupt those of us with financial means to question how it is that the vast majority of those contracting this disease are living in conditions of poverty. 96% means that about 31,680,000 people are living in places with challenged economic, educational, and health care systems. In other words, presumably only about 4% have some (even if modest) access to decent care, while the rest presumably do not—at least, not without governmental assistance. Another 25 million people have already died from the virus’s devastating impact on the body’s immune system. Why has this virus traveled to the poorest parts of the world?
The statistics are shallow. Like all statistics, they conceal as much as, if not more than, they reveal. Behind each of these numbers is a man, a woman, a child, a daughter, a son, a mother, a father, a spouse, a partner, a friend. Each one has a name, a heritage, a history. Each one has a story.
But their stories often go without attention, or are left entirely untold, supplanted by an overpowering narrative that edits their own. The dominant story line unfolds to express the view that HIV/AIDS is about individual behaviors. These behaviors, mainly drug use, promiscuous sex, and homosexual relations, mean that the infection (so goes the narrative) is in some way merited, the logical consequence of a foolish choice. The madness of this kind of reasoning needs to be interrupted.
No one deserves HIV/AIDS.
They are called “voiceless.” But people living with HIV/AIDS have voices. It is just that louder, more powerful ones have drowned them out, rendering them silent. These are the voices that shush neighbors in clinic waiting rooms when frightened patients whisper news of an infection, stigmatizing those testing positive. These voices shame those testing positive for having acquired the virus. These voices attempt to justify turning away to other, more “worthy” recipients of dollars.
But the narrative is more involved than we’ve been led to believe, its characters more complex, its plot not so linear. Certainly, individual behaviors play a part in the plot line. But when 96% of those living with the virus are concentrated in the poorest regions of the world, it is insufficient to point only to the individual, and to call for a higher morality. Reducing the rates of HIV/AIDS in the world is also going to require moral accountability in the so called “developed” world that gives shape to world economies. Reducing the numbers of people infected with and affected by HIV/AIDS is going to require dedication to the task of making resources accessible to all, rather than to the advantage of some and to the distinct disadvantage of the rest.
This revised narrative is evident, for example, in a story about a young woman in Thailand by the name of Lek, told by filmmaker Rory Kennedy in her documentary Pandemic: Facing AIDS. When she was raped as a young girl, Lek left her family’s rice farm in order to prevent shame from falling on her father’s name. She later married, but was abandoned after she had given birth to a son. She sent her baby to her parents so that she could go into the city to try to earn a living wage to assist her parents in supporting him. Without an education, her options were limited. She tried tending bar, and ultimately sold sex for money. By the time she was in her mid-twenties, she had contracted HIV/AIDS. Medicines were out of reach financially. The film documents the wasting away of her body, and the agony of her final days without medications even to alleviate the pain.
Paul Farmer, a medical anthropologist who teaches half of the year at Harvard and spends the other half practicing medicine in Haiti, all the while writing books and leading Partners in Health, indicates that this kind of story is more common than most of privilege dare to imagine. People become desperate when resources become more and more scarce, and resources are becoming increasingly scarce in many places throughout the world. Men feel forced to travel hundreds of miles away from home in order to work for months on end. Relatively few, it seems, return home having had no other encounters with women. In some communities in stories that Farmer tells, fathers who accrue high debts are stalked by dealers in the sex trade. Some sell their daughters to pay off debtors, or to feed the younger ones. Women coming of age know the way to financial security in the world is to marry, so they look for available men, not all of whom have been chaste. Uneducated women, also desperate to earn money to buy food to stave off hunger for themselves and for their children, often are vulnerable to human trafficking, or resort to trading sex for money.
In many ways, Farmer confirms, Lek is like the majority of people today contracting HIV/AIDS—people whose choices in life are measured by the degrees of jeopardy they carry according to their social location in relation to gender, ethnic background, economic class, age, orientation, accessibility of healthcare, accessibility of education, immigration status, and so on. However, when people have hope that they will find gainful employment that honors them as human beings, fewer become addicted to drugs. When people have access to an education that promises a place in the work force, fewer are made vulnerable to an infection by traveling hundreds of miles from home, or by trading sex for money. When people form cultures that do not tolerate human trafficking, rates of HIV/AIDS infection drop.
Such stories are often hard to hear. They involve violence far too often, and hopelessness some of the time. In encountering them, a seething but righteous anger begins to boil against the circumstances, not at all accidental, that have led us to the interruptive 96%.
Nevertheless, we must listen to these stories. We must hear them. Because in these stories is the potential to reverse the trajectory of one narrative, and the empowerment of another. In them is the possibility for a new story to unfold, where fewer and fewer are made vulnerable, because more and more recognize the wisdom of “ubuntu,” that where one is diminished, all are diminished; where one is nurtured, all are nurtured.
“30 Years / 30 Lives” offers another opportunity to listen to stories that otherwise might go unheard—including the voices of those affiliated with Open Arms of Minnesota.