Learning from the Fore People
For his latest book, The Collectors of Lost Souls: Turning Kuru Scientists into Whitemen, Warwick Anderson headed out of the archives and into the highlands of Papua New Guinea. Against the background of his own experiences of research on the ground, Anderson highlights the ambiguous legacy of kuru, which brought to the Fore people Western scientists, temporary wealth, and tenuous connections with the outside world.
My helicopter landed on the decaying basketball court at Ivingoi mission a few months after the last kuru autopsy in 2003. At the time, raskols – the cute Pidgin word for very un-cute bandits – patrolled the only road from Goroka, in the eastern highlands of New Guinea, so flying over them seemed the safer route. It was an ostentatious arrival and 20 or so old men and children stood around watching closely. I felt uncomfortable, but it could have been worse; most adults were already in their gardens or doing other business, and so missed the entertainment.
Along with my research assistant, Tom Strong, a young anthropologist from Princeton who had lived nearby, I came to talk with the Fore (pronounced For-ay) people who once were afflicted with the fatal brain disease kuru. With support from the National Science Foundation, I was writing a history of the complicated and fraught investigations of this bizarre and tragic epidemic – from first contact with the Fore in the 1950s to the events of the past few months.
When whites first encountered the Fore, kuru was killing about one percent of the population each year, mostly women and children. At first, it looked strange enough to be comical, with peculiar twitching, failure of coordination, and dance-like movements, but it led inevitably to death. Through the 1950s and 60s, kuru (which means shivering or shaking) was disrupting communities, giving rise to sorcery allegations and payback killings, emptying villages of women and children. The Fore feared extinction.
In part, the kuru story is a tale of competition among scientists from the United States and Australia; animosity between Australian colonial authorities and maverick foreign medicos; and, eventually, strained collaboration between virologists, anthropologists, and epidemiologists, leading to the discovery of the first human “slow virus” and the identification of cannibalism as the route of its transmission. Unavoidably, it is largely the story of D. Carleton Gajdusek, a prodigiously talented and troubled scientist whose commitment to his beloved “primitives” drove efforts to understand the disease. Gajdusek won the Nobel Prize in physiology or medicine in 1976 for discovering the slow virus, which also seemed to cause Creutzfeldt-Jakob disease (CJD) and other puzzling neurological conditions, though he never isolated the agent. Years later, Stanley Prusiner, who visited the Fore in 1978 and 1980, would argue provocatively that a deformed pathogenic protein, which he called a prion, caused spongiform encephalopathies like kuru, CJD, and “mad cow disease.” His Nobel came in 1997. The tragic story of Fore suffering is thus a remarkable tale of scientific discovery.
I first heard about kuru as a medical student in Melbourne. Many of my teachers had been to New Guinea to investigate the disease and they liked to impress us with the picaresque adventures of Gajdusek, with whom they had engaged if not exactly collaborated. Later, as a graduate student at Penn, I read Gajdusek’s vivid journals and thought about telling the kuru story. Around 2000, I began interviewing more seriously the scientists and anthropologists involved in the research. They are still a close-knit group, sometimes fractious, other times very protective of one another. Many of them evidently still suffered from what Gajdusek called the disease Europeans catch from studying kuru. In any case, it soon became clear that I also needed to talk with the Fore, especially with those who assisted the scientists, to get a full picture of activities and interactions in the field. Hence my 2003 trip to the eastern highlands, south of Okapa.
Jerome, a lanky Englishman who was one of the few remaining field investigators, ran up the hill to greet me and bring me to the new kuru research project house. There I met Anderson, the main local organizer of kuru research, the key intermediary, who told me he would look after me for the following weeks and find me informants, mostly the old men who once worked with the scientists. In typical Fore fashion he bluntly told me that if I did not like this arrangement I could “piss off.” He smiled as he said it. In fact, I was pleased he would get people to talk to me from the first day, even if the version of events I heard might be filtered and distorted in some way. From the start, I felt happy working with Anderson. Within a few minutes, we were both commenting on the strange coincidence of being namesakes and age-mates, which imply significant affinities in Melanesian culture.
Over a cup of tea, Anderson expressed disapproval of the generosity of an anthropologist who had passed through the region a few months earlier, and he warned me not to inflate the price of stories. If I planned to behave like a “white man,” he said, I should find the satellite phone and call back the helicopter. For when people like me do anything “heavy,” he was the one who suffered the consequences. I later realized he was still trying to clean up the big mess resulting from the last kuru autopsy.
During the following weeks we settled in at the Open Bible mission, fetching water from the well, brewing copious pots of tea, chewing on thick “Highway Beef” crackers, cooking the kaukau (sweet potato) bought along the roadside, and for special occasions preparing the tinfish and rice we had carried in. Sometimes I chatted with the Open Bible pastor, a Fore who had trained in Iowa. Each morning, Anderson appeared with another old man for me to interview and each afternoon – when the mist enclosed the house and the rain began – he left for his own village of Waisa. Each day was full of curious visitors. Everyone wanted to tell his story and to have his name attached to it. Everyone needed to explain his crucial contribution to kuru research. Everyone asked for more compensation, now a New Guinea convention.
Warwick Anderson with Masasa at Okapa. Masasa told Anderson that he never received adequate compensation for his research work.
After a few days at Ivingoi, Tom and I decided to walk to Okapa. The winding road was muddy and steep in places. Soon we acquired a retinue of a hundred or so children, who expressed surprise at seeing white men walking and carrying packs. Some of the younger ones appeared frightened when the adolescents teased them, telling them we were ghosts. The braver ones wanted to touch our skin. At the end of three or so hours of hard walking, we arrived at the dilapidated station. It was market day and hundreds of Fore clamored around us. I found a grassy clearing and sat down next to a solitary, proud old man. Piles of fruit and vegetables accumulated in front of me. Eventually, the old man leaned over and told me he was Masasa and that he had come from Yagusa to talk with me. I knew him from Gajdusek’s journals, but Anderson had been “unable” to find him. Among other things, Masasa needed to tell me that he never received adequate compensation for his research work.
Along the track, Fore would come up to me and ask about English kuru. Someone told them kuru was afflicting another people. But how, they wondered, had these other people learned the correct techniques of kuru sorcery?
The following week we trudged over the divide and down to Purosa. Some boys we met along the way, trying to kill birds with slingshots, warned us about the sorcerers at Kamira. Without Anderson again, I sought out Turi, the scrawny, bashful son of one of Gajdusek’s most cherished assistants. Wearing his T-shirt emblazoned with “Hair Dressers are Creative Professionals,” Turi found some of his father’s friends and helpers. For a few days, we talked with the old men, sweaty in their second-hand clothes, crouching or lounging on the floor of the aid post, leaning against the pastel murals. They told us about odd white men who collected stories, banged away at a machine, did some sort of dance called an examination, shone lights into eyes, took blood and other specimens – but all of it proved very disappointing as conjuring or divination, and kuru continued. We heard about rushed bush autopsies and vexed negotiations over the possession of body parts. The character of exchange relations in the field was never clear, no one could be sure just what was entailed in these transactions and whether they were entering into moral peril.
At night, we stayed at an empty house on the local coffee plantation. Then, on the morning we planned to climb six hours or so up to Agakamatasa, the most isolated Fore settlement and once Gajdusek’s home, the rain poured down. Tired, sunburned, scratching my fleabites, I reluctantly decided to return to Ivingoi. I worried that tropical ulcers were developing where leeches had broken the skin and I seemed to have acquired some lice. In any case, I had heard rumors that Agakamatasa was in mourning and no one in the village would talk with me.
Clinging to the eastern margins of the highlands, the Fore region is still a poor place, with few pigs and sparse material culture. Though promising much, coffee production has delivered little. Most plants are abandoned – and anyhow it is hard to get the beans past the raskols. Little cash circulates, even at the roadside stalls and trade stores. There are, however, more aid posts than elsewhere in the highlands, a legacy of kuru.
When I was there, everyone was talking about compensation. A sort of postcolonial melancholy pervaded conversations, a sense that as individuals and as a people they were unfairly excluded from globalization and its presumed rewards. Kuru research once led development of the region: the roads were kuru roads; the fibro buildings, kuru buildings. Kuru investigators supported the schools. Kuru brought “cargo.” But fewer resources now came down the track from Goroka and less was happening. It seemed the white men they collected – their white men – had let down the Fore. Yet a desire, a yearning, had been stimulated or amplified. White men came and went, got bigpela prizes and perhaps plenty of money, and left the Fore people with demands unmet and expectations dashed. Now everyone wanted more compensation, especially some of Gajdusek’s former assistants. A few even wrote to him, but he replied he was a poor man, living in exile from his own country. They did not believe him. Instead, they harangued Jerome and tried to take out their frustrations on Anderson. It was not so much a demand for redress of wrongdoing, such as organ theft, as an expression of resentment and jealousy, a breakdown of trust, a plea for recognition and respect. They wondered why their relationships with many of the scientists were no longer strong.
Around him, Anderson saw nothing but signs of disappointment and decline. “Now we see that money is changing everything, its value extends to everything,” he lamented. “That kind of idea has come along and ‘fouled’ the ideas of many men.” With everyone striving for money, nothing much remained to hold the community together. Ceremonial exchanges were dwindling. People claimed individual ownership of things that once were public goods. As he said this, I thought of the scientists in San Francisco, London, and Bethesda in their exciting new economy, with their patents and biotechnology companies. Anderson could have been talking about the transformation of the scientists’ economy too.
After a few weeks among the Fore, I found that I became involved in their lives, though never as intensely as scientists and anthropologists once were. Since then, I have managed to stay in contact with Anderson and some others, seeing them in Goroka, the provincial center, or Port Moresby, the decrepit capital of Papua New Guinea. In 2007, I caught up with 20 or more Fore at the End of Kuru meeting at the Royal Society, London. Amazingly adaptable, they showed no sign of jetlag or apprehension about the big city. Visiting some churches after the meeting, Fore enthusiastically instructed accompanying scientists and anthropologists on Christian iconography.
One afternoon, over a few pints of ale in a pub off Russell Square, Anderson suggested some changes to the book I was writing. The subtitle was bothering him. It was “Turning Whitemen into Kuru Scientists,” but Anderson pointed out it had been the other way round; Fore had transformed the scientists into their whitemen, at least for a short time. So I changed the title.
Warwick Anderson is research professor in the Department of History and Centre for Values, Ethics and the Law in Medicine at the University of Sydney. He retains a minor appointment at the University of Wisconsin-Madison.