Paul Farmer
The ethnographically visible, central Haiti, September 2000: Most hospitals in the region are empty. This is not because of a local lack of treatable pathology; rather, patients have no money to pay for such care. One hospital – situated in a squatter settlement just 8 kilometers from a hydroelectric dam that decades ago flooded a fertile valley – is crowded. Medicines and laboratory studies are free. Every bed is filled, and the courtyard in front of the clinic is mobbed with patients waiting to be seen. Over a hundred have slept on the grounds the night before and are struggling to smooth out wrinkles in hand‐me‐down dresses or pants or shirts; hats are being adjusted, and some are massaging painful cricks in the neck. The queue of those waiting to have a new medical record created is long, snaking toward the infectious‐disease clinic I am hoping to reach. First, however, it is better to scan the crowd for those who should be seen immediately.
Less ethnographically visible is the fact that Haiti is under democratic rule. For the first time in almost two centuries, democratic elections are planned and could result in a historic precedent: President René Préval, elected some years earlier, could actually survive his presidency to transfer power to another democratically elected president. If Préval succeeds, he will be the first president in Haitian history ever to serve out his mandate, not a day more, not a day less.
To local eyes, the prospect of this victory (which later did indeed come to pass) is overwhelmed by the vivid poverty seeping into the very seams of Haitian society. For the rural poor, most of them peasants, this means erosion and lower crop yields; it means hunger and sickness. And every morning the crowd in front of the clinic seems to grow.
To foreign eyes, the Haitian story has become a confused skein of tragedies, most of them seen as local. Poverty, crime, accidents, disease, death – and more often than not their causes – are also seen as problems locally derived. The transnational tale of slavery and debt and turmoil is lost in the vivid poverty, the understanding of which seems to defeat the analyses of journalists and even many anthropologists, focused as we are on the ethnographically visible – what is there in front of us.
Making my way through this crowd has become a daily chore and triage – seeking out the sickest – a ritual in the years since I became medical director of the clinic. Now the morning sun angles into the courtyard, but the patients are shaded by tall ficus trees, planted there years before. The clinic and hospital were built into the hillside over the previous 15 years, but the dense foliage gives the impression that the buildings have been there for decades.
I see two patients on makeshift stretchers; both are being examined by auxiliary nurses armed with stethoscopes and blood‐pressure cuffs. Perhaps this morning it will take less than an hour to cross the 600 or so yards that separate me from another crowd of patients already diagnosed with tuberculosis or AIDS. These are the patients I am hoping to see, but it is also my duty to see to the larger crowd, which promises, on this warm Wednesday morning, to overwhelm the small Haitian medical staff.
A young woman takes my arm in a common enough gesture in rural Haiti. “Look at this, doctor.” She lifts a left breast mass. The tumor is not at all like the ones I was taught to search for during my medical training in Boston. This lesion started as an occult lump, perhaps, but by this September day has almost completely replaced the normal breast. It is a “fungating mass,” in medical jargon, and clear yellow fluid weeps down the front of a light‐blue dress. Flies are drawn to the diseased tissue, and the woman waves them away mechanically. On either side of her, a man and a woman help her with this task, but they are not kin, simply other patients waiting in the line.
“Good morning,” I say, although I know that she is expecting me to say next to nothing and wants to be the speaker. She lifts the tumor toward me and begins speaking rapidly.
“It’s hard and painful,” she says. “Touch it and see how hard it is.” Instead, I lift my hand to her axilla and find large, hard lymph nodes there – likely advanced and metastatic cancer – and I interrupt her as politely as I can. If only this were a neglected infection, I think. Not impossible, only very unlikely. I need to know how long this woman has been ill.
But the woman, whose name is Anite, will have none of it. She is going to tell the story properly, and I will have to listen. We are surrounded by hundreds, and at least 40 can hear every word of the exchange. I think to pull her from the line, but she wants to talk in front of her fellow sufferers. For years I have studied and written about these peculiarly Haitian modes of declaiming about one’s travails, learning how such jeremiads are crafted for a host of situations and audiences. There is so much to complain about. Now I have time only to see patients as a physician and precious little time for interviewing them. I miss this part of my work, but although I want to hear Anite’s story, I want even more to attend to her illness. And to do that properly will require a surgeon, unless she has come with a diagnosis made elsewhere. I look away from the tumor. She carries, in addition to a hat and a small bundle of oddments, a white vinyl purse. Please, I think, let there be useful information in there. Surely she has seen other doctors for a disease process that is, at a minimum, months along?
I interrupt again to ask her where she has come from and if she has sought care elsewhere. We do not have a surgeon on staff just now. We have been promised, a weary functionary at the Ministry of Health has told me, that the Cuban government will soon be sending us a surgeon and a pediatrician. But for this woman, Anite, time has run out.
“I was about to tell you that, doctor.” She has let go of my arm to lift the mass, but now she grips it again. “I am from near Jérémie,” she says, referring to a small city on the tip of Haiti’s southern peninsula – about as far from our clinic as one could be and still be in Haiti. To reach us, Anite must have passed through Port‐au‐Prince, with its private clinics, surgeons, and oncologists.
“I first noticed a lump in my breast after falling down. I was carrying a basket of millet on my head. It was not heavy, but it was large, and I had packed it poorly, perhaps. The path was steep, but it had not rained on that day, so I don’t know why I fell. It makes you wonder, though.” At least a dozen heads in line nod in assent, and some of Anite’s fellow patients make noises encouraging her to continue.
“How long ago was that?” I ask again.
“I went to many clinics,” she says in front of dozens of people she has met only that morning or perhaps the night before. “I went to 14 clinics.” Again, many nod assent. The woman to her left says “Adjè!” meaning something along the lines of “You poor thing!” and lifts a finger to her cheek. This crowd response seems to please Anite, who continues her narrative with gathering tempo. She still has not let me know how long she has been ill.
“Fourteen clinics,” I respond. “What did they say was wrong with you? Did you have an operation or a biopsy?” The mass is now large and has completely destroyed the normal architecture of her breast; it is impossible to tell if she has had a procedure, as there is no skin left to scar.
“No,” replies Anite. “Many told me I needed an operation, but the specialist who could do this was in the city, and it costs $700 to see him. In any case, I had learned in a dream that it was not necessary to go to the city.” (“The city” means Port‐au‐Prince, Haiti’s capital.)
More of the crowd turns to listen; the shape of the line changes subtly, beginning to resemble more of a circle. I think uncomfortably of the privacy of a US examination room and of the fact that I have never seen there a breast mass consume so much flesh without ever having been biopsied. But I have seen many in Haiti, and almost all have proven malignant.
Anite continues her narrative. She repeats that on the day of the fall, she discovered the mass. It was “small and hard,” she says. “An abscess, I thought, for I was breastfeeding and had an infection while breastfeeding once before.” This is about as clinical as the story is to get, for Anite returns to the real tale. She hurt her back in the fall. How was she to care for her children and for her mother, who was sick and lived with her? “They all depend on me. There was no time.”
And so the mass grew slowly “and worked its way under my arm.” I give up trying to establish chronology. I know it had to be months or even years ago that she first discovered this “small” mass. She had gone to clinic after clinic, she says, “spending our very last little money. No one told me what I had. I took many pills.”
“What kind of pills?” I ask.
Anite continues. “Pills. I don’t know what kind.” She had given biomedicine its proper shot, she seems to say, but it had failed her. Perhaps her illness had more mysterious origins? “Maybe someone sent this my way,” she says. “But I’m a poor woman – why would someone wish me ill?”
“Unlikely,” says an older man in line. “It’s God’s sickness.” Anite had assumed as much – “God’s sickness” being shorthand for natural illness rather than illness associated with sorcery – but had gone to a local temple, a houmfor, to make sure. “The reason I went was because I’d had a dream. The mass was growing, and there were three other small masses growing under my arm. I had a dream in which a voice told me to stop taking medicines and to travel far away for treatment of this illness.”
She had gone to a voodoo priest for help in interpreting this dream. Each of the lumps had significance, said the priest. They represented “the three mysteries,” and to be cured she would have to travel to a clinic where doctors “worked with both hands” (this term suggesting that they would have to understand both natural and supernatural illness).
The story would have been absurd if it were not so painful. I know, and once knew more, about some of the cultural referents; I am familiar with the style of illness narrative dictating some of the contours of her story and the responses of those in line. But Anite has, I am almost sure, metastatic breast cancer. What she needs is surgery and chemotherapy if she is lucky (to my knowledge, there is no radiation therapy in Haiti at this time). She does not need, I think, to tell her story publicly for at least the fifteenth time.
Anite seems to gather strength from the now‐rapt crowd, all with their own stories to tell the harried doctors and nurses once they get into the clinic. The semi‐circle continues to grow. Some of the patients are straining, I can tell, for a chance to tell their own stories, but no one interrupts Anite. “In order to cure this illness, he told me, I would have to travel far north and east.”
It has taken Anite over a week to reach our clinic. A diagnosis of metastatic breast cancer is later confirmed.
[…]
[…] Since the syndrome was first described, AIDS has also been termed a “social disease” and has been studied by social scientists, including anthropologists. Theses and books have been written. One scholar wrote, early on, of an “epidemic of signification.” When AIDS was first recognized, in the early eighties, it was soon apparent that it was an infectious disease, even though other, more exotic interpretations abounded at the time. Well before Luc Montagner discovered HIV, many believed that the etiologic agent was a never‐before described virus, and people wanted to know, as they so often do, where this new sickness came from. During the eighties the hypotheses circulating in the United States suggested that HIV came to the United States from Haiti. Newspaper articles, television reports, and even scholarly publications confidently posited a scenario in which Haitian professionals who had fled the Duvalier regime ended up in western Africa and later brought the new virus back to Haiti, which introduced it to the Americas. AIDS was said to proliferate in Haiti because of strange practices involving voodoo blood rituals and animal sacrifice.
These theories are ethnographically absurd, but they are wrong in other ways, too. First, they happened to be incorrect epidemiologically. AIDS in Haiti had nothing to do with voodoo or Africa. Second, they had an adverse effect on Haiti – the tourism industry collapse in the mid‐eighties was due in large part to rumors about HIV – and on Haitians living in North America and Europe. The perception that “Haitian” was almost synonymous with “HIV‐infected” in the minds of many US citizens, has been well documented.
How, then, was HIV introduced to the island nation of Haiti? An intracellular organism must necessarily cross water in a human host. It was clear from the outset that HIV did not come to Haiti from Africa. None of the first Haitians diagnosed with the new syndrome had ever been to Africa; most had never met an African. But many did have histories of sexual contact with North Americans. In a 1984 paper published in a scholarly journal, the Haitian physician Jean Guérin and colleagues revealed that 17% of their patients reported a history of sexual contact with tourists from North America. These exchanges involved the exchange of money, too, and so “sexual tourism” – which inevitably takes place across steep grades of economic inequality – was a critical first step in the introduction of HIV to Haiti. In fact, the viral subtype (“clade”) seen in Haiti is a reflection of the fact that the Haitian AIDS epidemic is a subepidemic of the one already existing in the United States.
There is more, of course, to the “hidden history” of AIDS in Haiti. By the time HIV was circulating in the Americas, Haiti was economically dependent not on France, as in previous centuries, but on the United States. From the time of the US military occupation through the Duvalier dictatorships (1957–86), the United States had come to occupy the role of chief arbiter of Haitian affairs. After the withdrawal of troops in 1934, US influence in Haiti grew rather than waned. US‐Haitian agribusiness projects may have failed, deepening social inequalities throughout Haiti as the rural peasantry became poorer, but US‐Haitian ties did not. Haiti became a leading recipient of US “aid,” and the United States and the “international financial institutions” were the Duvalier family’s most reliable source of foreign currency. Haiti became, in turn, the ninth‐largest assembler of US goods in the world and bought almost all of its imports from the United States. Tourism and sous‐traitance (offshore assembly) replaced coffee and other agricultural products as the chief sources of foreign revenue in Haiti.
Haiti is the extreme example of a general pattern. If one uses trade data to assess the degree of Caribbean‐basin countries’ dependency on the United States at the time HIV appeared in the region, one sees that the five countries with the tightest ties to the United States were the five countries with the highest HIV prevalence. Cuba is the only country in the region not linked closely to the United States. Not coincidentally, Cuba was and remains the country with the lowest prevalence of HIV in the Americas. It was possible to conclude an earlier book on the subject by asserting that “AIDS in Haiti is about proximity rather than distance. AIDS in Haiti is a tale of ties to the United States, rather than to Africa; it is a story of unemployment rates greater than 70 percent. AIDS in Haiti has far more to do with the pursuit of trade and tourism in a dirt‐poor country than with, to cite Alfred Métraux again, “dark saturnalia celebrated by ‘blood‐maddened, sex‐maddened, god‐maddened’ negroes.”
But this was merely the beginning of a biosocial story of the virus. The Haitian men who had been the partners of North Americans were by and large poor men; they were trading sex for money. The Haitians in turn transmitted HIV to their wives and girlfriends. Through affective and economic connections, HIV rapidly became entrenched in Haiti’s urban slums and then spread to smaller cities, towns, and, finally, villages like the one in which I work. Haiti is now the most HIV‐affected country in the Americas, but the introduction and spread of the new virus has a history – a biosocial history that some would like to hide away.
Like many anthropologists, I was not always careful to avoid stripping away the social from the material. But HIV, though hastened forward by many social forces, is as material as any other microbe. Once in the body, its impact is profound both biologically and socially. As cell‐mediated immunity is destroyed, poor people living with HIV are felled more often than not by tuberculosis. Last year, HIV was said to surpass tuberculosis as the leading infectious cause of adult death, but in truth these two epidemics are tightly linked. Further, merely looking at the impact of HIV on life expectancy in certain sub‐Saharan African nations lets us know that this virus has had, in the span of a single generation, a profound effect on kinship structure.
All this is both interesting and horrible. What might have been done to avert the deaths caused by these two pathogens? What might be done right now? One would think that the tuberculosis question, at least, could be solved. Because there is no nonhuman host, simply detecting and treating promptly all active cases would eventually result in an end to deaths from this disease. Money and political will are what is missing – which brings us back to structural violence and its supporting hegemonies: the materiality of the social.
AIDS, one could argue, is thornier. There is no cure, but current therapies have had a profound impact on mortality among favored populations in the United States and Europe. The trick is to get therapy to those who need it most. Although this will require significant resources, the projected cost over the next few years is less than the monies allocated in a single day for rescuing the US airlines industry. But the supporting hegemonies have already decreed AIDS an unmanageable problem. The justifications are often byzantine. For example, a high‐ranking official within the US Department of the Treasury (who wisely declined to be named) has argued that Africans have “a different concept of time” and would therefore be unable to take their medications on schedule; hence, no investment in AIDS therapy for Africa. The head of the US Agency for International Development later identified a lack of wristwatches as the primary stumbling block. Cheap wristwatches are not unheard of, but, as I have said, the primary problem is a matter of political will. Others have underlined, more honestly, the high costs of medications or the lack of health‐care infrastructure in the countries hit hardest by HIV. Still others point to fear of acquisition of resistance to antiretroviral medications. The list is familiar to those interested in tuberculosis and other treatable, chronic diseases that disproportionately strike the poor.
The distribution of AIDS and tuberculosis – like that of slavery in earlier times – is historically given and economically driven. What common features underpin the afflictions of past and present centuries? Social inequalities are at the heart of structural violence. Racism of one form or another, gender inequality, and above all brute poverty in the face of affluence are linked to social plans and programs ranging from slavery to the current quest for unbridled growth. These conditions are the cause and result of displacements, wars both declared and undeclared, and the seething, submerged hatreds that make the irruption of Schadenfreude a shock to those who can afford to ignore, for the most part, the historical underpinnings of today’s conflicts. Racism and related sentiments – disregard, even hatred, for the poor – underlie the current lack of resolve to address these and other problems squarely. It is not sufficient to change attitudes, but attitudes do make other things happen.
Structural violence is the natural expression of a political and economic order that seems as old as slavery. This social web of exploitation, in its many differing historical forms, has long been global, or almost so, in its reach. […]