“What if containment is a joke?” (Acceptance 576).

It all begins with a thorn: the delicate, glittering prickle of an unidentified plant growing at the base of a lighthouse in a sleepy coastal town. On a peaceful sunny day, the thorn pricks a man’s thumb, an act of violence so mild, so mundane, it scarcely attracts notice. Yet the end of the world starts there, where one organism pierces the skin of another. That tiny rift swells to a full-fledged invasion; the man and his lighthouse become the first targets of an inexplicable transformative force. When the initial cataclysm subsides, the coast has been purged of all human life, its inhabitants dead or transformed beyond recognition. The rest of the world is left only with questions. What exactly happened at the lighthouse? What lies dormant in that lonely landscape? Most importantly, how can whatever remains there be contained?

This nebulous, quietly sinister premise forms the foundation of Jeff VanderMeer’s novels Annihilation, Authority, and Acceptance, collectively known as the Southern Reach trilogy. The novels take place, for the most part, thirty years after the mysterious event at the lighthouse, which has been officially categorized an “environmental disaster” and, by most people, forgotten about entirely. Only the government organization known as the Southern Reach continues to investigate the cordoned-off region now designated “Area X”: from the byzantine depths of its crumbling bureaucracy, the Southern Reach dispatches research expeditions, interprets findings, and scrabbles desperately at the possibility of defensive action. For Area X is growing, and it threatens, like a thorn stealthily penetrating a thumb, to infiltrate the very substance of the world.

One way to read the Southern Reach trilogy is thus as a story about borders: about the order and security they promise, the function of the divisions they uphold, and, most bewitchingly, about what happens when they are breached. Borders structure the world of the Southern Reach trilogy at every scale. The most prominent border is the one separating Area X from the rest of the world; it is a high-security zone patrolled by armed guards, officially passable only by approved expedition members placed under hypnosis. Because of its history of “environmental disaster,” Area X is under perpetual quarantine; the border acts to keep the human world safe, in theory, from whatever remaining hazards Area X’s weird biome might harbor. Each expedition member also carries a personal version of that border, writ small, as they venture into Area X: they are trained to protect their bodies against infection from foreign ecosystems, keeping a safe distance from contaminants and using breathing masks in risky situations. If the Southern Reach has learned one thing from decades of research, it is that skin, on its own, is a feeble border indeed.

Both forms of the border, geographic and personal, are fundamentally concerned with the division between human things—bodies, populations, communities—and nonhuman things that threaten to get in where they don’t belong—thorns, infections, monsters. Both are thus embedded in broad-based cultural norms of sickness and health, contamination versus purity. Borders enforce the principle that a healthy body (whether a human, an environment, or a nation) exists in a state of boundedness, closed off to invaders. A body that leaks and oozes, overflowing its boundaries and mixing with the outside world, is considered suspect—improper, diseased, and potentially dangerous.

In VanderMeer’s story, the health of individual human bodies and the body of planet Earth itself are equally at stake, and deeply entangled. Yet as the Southern Reach’s human operatives cling to the comforting myth of prophylaxis, the unfolding story makes clear that borders are human ideas: partial, temporary, and, faced with the messy interconnectedness of ecological growth, ultimately irrelevant. Infection, contamination, and mixture are Area X’s biological imperatives; the place infiltrates the bodies of expedition members as it infiltrates the whole world beyond the border. The result is the loss of what the Southern Reach is trying to safeguard: the purity and coherence of the human species. Whether Area X’s infection of the human world constitutes a move toward sickness or wellness is the series’ unanswerable central question.

***

The text of Annihilation, the first novel in the series, is presented as the expedition journal of a woman identified only as “the biologist.” Names are discouraged on Southern Reach missions, and while most recruits find it difficult to detach from their personal identities, the biologist gives hers up without a twinge of nostalgia. This nonchalance toward social norms is characteristic of a woman whose defining trait is a profound affinity for the nonhuman world. By her own admission, navigating the company of humans has always been difficult for her; in snatches of sparse prose scattered across her journal, she sketches the contours of an unhappy childhood, a solitary adulthood, a tumultuous marriage troubled by an unbridgeable gulf. Yet from the biologist’s perspective, her inherent distance from humankind is not a tragic flaw: it is simply the nature of this organism to orient toward other forms of life. To the chagrin of her gregarious husband, who wistfully nicknames her “Ghost Bird” for her spectral presence in his life, the biologist’s primary relationship is with the natural world. “Fun for me was sneaking off to peer into a tidal pool, to grasp the intricacies of the creatures that lived there,” she explains. “Sustenance for me was tied to ecosystem and habitat, orgasm the sudden realization of the interconnectivity of all things. Observation had always meant more to me than interaction” (Annihilation 72; all quotes are from Annihilation unless otherwise specified).

Ill at ease in human society and driven always to observe, the biologist’s personality and line of work combine to attune her to the fascinating possibilities of nonhuman life on a macro and micro scale. It is fitting that, several days into the expedition, her biophiliac curiosity brings her too close to the dangerous lifeforms of Area X. On an exploratory mission with two fellow recruits, the biologist descends the spiral staircase of an underground tower. The team is startled to discover along the tower’s left-hand wall a seemingly endless line of cursive script, written in the curling filaments of an unknown fungus and peppered with tiny hand-shaped creatures. Entranced by the mysterious ecosystem of the words, the biologist momentarily lets down her guard:

I leaned in closer, like a fool, like someone who had not had months of survival training or ever studied biology. Someone tricked into thinking that words should be read.

I was unlucky—or was I lucky? Triggered by a disturbance in the flow of air, a nodule in the W chose that moment to burst open and a tiny spray of golden spores spewed out. I pulled back, but I thought I had felt something enter my nose, experienced a pinprick of escalation in the smell of rotting honey. (17)

Just as the Southern Reach guards the border separating Area X from the human-occupied world, expedition members are instructed to zealously maintain personal borders between their bodies and Area X’s biota. Here, that personal border is breached—not violently, but subtly, through the spores’ delicate invasion of the biologist’s nose. Though she keeps her inhalation a secret from the group, the biologist knows instantly that what has happened is a “contamination” (17). Area X has entered her body, has infected her, and she is not the same as before.

Throughout the remainder of Annihilation, the biologist records the gradual sculpting of her body by the spores’ mysterious program as the infection takes hold. Her senses intensify; her reflexes heighten; her capacity for healing quickens. Her skin develops a phosphorescent glow. She feels an irresistible, growing affinity—what she can only describe as a “brightness” (55)—toward Area X and its inhabitants. By Annihilation’s final pages, the biologist is only partly human. By the time the reader approaches the end of the trilogy’s final volume Acceptance, she has become something else altogether. Something entirely different. “In all her glory and monstrosity” (Acceptance 492).

***

According to Jeff VanderMeer’s account of writing the Southern Reach trilogy, the idea for Area X came out of two overlapping conditions: “dental surgery along with anger and grief over the BP Gulf Oil Spill.” Suffering from serious illness following an extraction and root canal, VanderMeer finds his anxieties about the environmental devastation wreaked by the 2010 spill transformed into a “dark dream”—a sunken tower, words made of fungus, the scrawling of an unknown entity far below—whose elements eventually spin out into a three-volume story. The trilogy is born at the crossroads of environmental devastation and personal illness: oil infiltrates the gulf as Streptococcus infiltrates his own immune system. Two forms of contamination converge in a feverish bout of writerly inspiration.

It is easy to identify echoes of Vandermeer’s experience in the emphasis on borders, both geographic and personal, that structures the story of Area X. Yet the implications of contamination become far more equivocal when transferred from reality to fiction. The oil spill and its massive poisoning of local ecosystems is an unquestionable tragedy for human, animal, and plant life; the disaster epitomizes a situation where the border between human things (drilling rigs, extracted oil) and nonhuman things (bodies of water, marine life) should, ideally, have been impenetrable. But Area X is not an oil spill. Indeed, it is the opposite: a rare site of pristine wilderness in a heavily polluted world. Life thrives in its rich biosphere, where ecosystems of the forest, swamp, salt marsh, and marine coast overlap. Area X is home to otters and wild boars, velvet ants and damselflies, purple thistles and tall pines, cormorants and owls, among many other known and unknown species.

In contrast, the human world, protected behind the border maintained by the Southern Reach, lacks such vibrancy. Development, industrialization, and pollution have all taken their familiar toll. From the biologist’s perspective, “the world back beyond the border was what it had always been during the modern era: dirty, tired, imperfect, winding down, at war with itself” (20). Area X offers a land cleansed of human contamination and enthusiastically flourishing. Even the air is noticeably different: “so fresh it buffeted the lungs” (8), its cleanliness renders it almost unbreathable to expedition members inured to smoggy skies.

So while the function of the heavily-guarded border is to quarantine, to protect from contamination, the strange circumstances of Area X yield confusing uncertainty about which side is being protected from the other. “I understood why no one lived in Area X now, that it was pristine because of that reason,” writes the biologist, “but I kept un-remembering it. I had decided instead to make believe that it was simply a protected wildlife refuge, and we were hikers who happened to be scientists” (9). Area X is at once a nature preserve under protection from the ravages of development, and a disaster area quivering with biohazards that threaten to leak across the world: both impossibly healthy and dreadfully diseased. Several scholars, including Matthew Masucci and Brian Onishi, note the trilogy’s self-conscious repetition of “pristine wilderness” to describe Area X, and the paradoxical horror imbued in that normally pleasant phrase. While “pristine” implies an original, unspoiled condition, Area X is “pristine” only in the sense that no humans currently live there: the former settlement and all of its impacts have been absorbed and overwritten by nonhuman nature, but no one who enters it can forget that the land is in its post-human, not pre-human, stage of growth.

The creeping horror of VanderMeer’s trilogy emerges from the threat that this “pristine wilderness” presents to the human world. Yet the nature of that threat is far less clear than the threat of 780,000 cubic meters of oil to a marine ecosystem. Area X cultivates a testing ground for a permeable border between human and nonhuman things. The Southern Reach organization is officially dedicated to controlling and reversing that permeability. But the biologist’s unorthodox point of view permits a recurring question: Is Area X really a threat at all? Might it offer, rather, a possibility to be embraced?

The answer depends on one’s investment in the status quo of the Anthropocene, the modern geological epoch defined by the drastic shaping of the planet’s terrains, climates, and ecosystems by human activity. It depends on the value one places on preserving the human species in its current form, with its current capacity for planetary domination, and how liberally one is willing to define the notion of a “healthy” planet. Area X’s infiltration of the borders erected against it inaugurates a massive change for planet Earth, the beginnings of what David Tompkins calls “a comprehensive reversal of the Anthropocene Age.” Is it important, the trilogy asks, that the human species, the instigator of so much damage, survive such a cataclysm? What counts as survival, anyway—is it only the unaltered reproduction of a current form, or does it involve metamorphosis, evolution, adaptation? What might be gained by perforating the border between the human and nonhuman world, by letting the latter, for a change, infect the former?

***

VanderMeer’s biologist is uniquely positioned to process her mysterious infection with an open mind. Her interest, after all, is the study of life in all its variety, the constant exchanges and encounters between organisms. From her perspective, the infection of one organism by another is not a crisis, but a novel phenomenon to scrutinize—even in her own body. This cavalier approach to sickness, the reader learns, was a point of contention between the biologist and her husband, a medical professional. As she documents the infection’s early stages—mild fever, coughing, light-headedness, and other symptoms of a low-grade cold—she imagines his reaction: “My husband would have been proactive about the brightness. He would have found a thousand ways to try and cure it—and to take away the scars, too—and not let me deal with it on my own terms, which is why during our time together I sometimes didn’t tell him when I was sick” (100). Her husband’s approach to disease is not only to pursue an immediate cure, but to erase any traces of sickness, as if the state of health had never been interrupted. But for the biologist, sickness has its own value, scars their own form of interest. Letting herself be sick, “deal[ing] with it in her own terms,” becomes a stealthy act of independence from her husband and his urge to fix.

Getting sick is far graver in Area X, however, than in the world beyond the border. The biologist’s expedition has no doctors, few medical supplies, and uncertain means of exit. Furthermore, the unknown nature of the ecosystem and the unspecified disaster that has occurred there bestows high stakes on any infection. Previous expedition members have suffered a range of mental and physical maladies. In one expedition, members commit group suicide; in the next, they go to war against one another. Members return from the most recent expedition as blank, disaffected shadows of their former selves, dying of systemic cancer six months later; among the afflicted was the biologist’s husband, the expedition’s medic. The biologist wonders, too, about what might have become of those who didn’t return from Area X. Strange animals roam the landscape: a charging boar with an anguished expression; a reed-dwelling creature emitting plaintive moans at dusk; a freshwater dolphin with a “painfully human” eye (64). This uncanny menagerie of apparent human-nonhuman hybrids suggests one possible outcome of an Area X-borne infection: contamination may be the first step in the breakdown and eventual transformation of human being.

But being human is just not that important to the biologist, who seems to identify more as an organism than as a person. She has come to Area X fully aware of the journey’s potentially toxic effects: after all, she watches firsthand as her husband wastes away from cancer and from the mysterious blankness that makes him a stranger to her. But she suspects that whatever happened to him, and to every hapless voyager before him, might happen differently to her. In her, Area X’s infection might run a different course: not a sickening, but a becoming. As she remembers looking into her dying husband’s eyes, she recalls seeing “a deep and unending solitude, as if he had been granted a gift that he didn’t know what to do with. A gift that was poison to him and eventually killed him. But would it have killed me?” (55). Only the prickly, antisocial biologist, oriented from childhood toward the nonhuman world, can appreciate Area X’s influence as a gift, rather than a deadly poison. If its effect is to contaminate human beings with a profound “solitude,” to rip them from human society and assimilate them into its strange wilderness, the biologist’s allegiance toward nature over culture suggests she may be ready to meet Area X halfway.

Her account of the infection and its progress is thus marked by extreme ambivalence. “I was unlucky—or was I lucky?” (17), she writes of the (un)timely spray of golden spores into her nose. The expected position to take toward this life-changing event would, of course, be “unlucky”: based on what she knows of previous expeditions, contamination threatens her health, mental stability, even her very humanity. The biologist does not disavow the expected judgment “unlucky,” but she does add an alternative, holding “lucky” and “unlucky” in tandem. Contained in the possibility that her infection could be “lucky” is a radical departure from standard human-centered systems of value. It takes the biologist’s indiscriminate fascination with life in all its forms, with the changes and disruptions inherent to biotic processes, to consider contamination by Area X a positive occurrence in the development of a human organism.

Indeed, the spores’ effects seem, in many ways, to confirm and enhance the biologist’s natural state, rather than drastically change it. After a lifetime spent intensely observing the natural world, she experiences her newly heightened attunement to her surroundings with obvious joy. “The wind picked up, and it began to rain,” she recounts shortly after her infection. “I saw each drop fall as a perfect, faceted liquid diamond, refracting light even in the gloom, and I could smell the sea and picture the roiling waves. The wind was like something alive; it entered every pore of me and it, too, had a smell, carrying with it the earthiness of the marsh reeds” (50). As her sensorium is reshaped, she perceives her environment with increasing intimacy, feeling herself a part of it and it a part of her.

To someone else, someone more invested in the human part of their identity, such ecological attunement might feel alarmingly new. To the biologist, it is deeply familiar. “My sole gift or talent, I believe now,” she writes of her life pre-expedition, “was that places could impress themselves upon me, and I could become a part of them with ease” (72-73). This willingness to receive—to let the substance of her own identity be imprinted by her environment, like pliant clay—is what makes her a good biologist, and a bad human. For to become fully part of an ecosystem, one must stop being a human, must give up the species-specific behavior of observing, interpreting, and dominating the natural world, and instead start being simply an organism among other organisms. Area X enforces that protocol on everyone who enters it: within its borders, unlike in the outside world, there are no special privileges associated with being human. It takes an unconventional kind of human to accept that condition, but the biologist is a rare bird indeed. “‘You prefer this place, you really do, don’t you?’” accuses a fellow expeditioner, her voice infused with “a kind of pity or disgust” (47) for what she perceives as the biologist’s lack of survivalist gumption. But the biologist intends to survive in Area X. It just doesn’t matter to her, ultimately, as what.

***

At the same time, some hesitation prevents the biologist from succumbing totally to the seduction of Area X. There are elements of humanity that she wants to preserve in herself, securing her personal borders against complete rupture. For although the biologist is more interested in ecosystems than in humans, she is by no means a misanthrope, and the evidence she uncovers of Area X’s violent disregard for human life sickens her. As the expedition crumbles and the biologist explores the territory on her own, she finds evidence of terrible suffering. An abandoned village houses human-shaped eruptions of vegetative matter—apparent casualties of the cataclysmic event thirty years prior. At the lighthouse, the destination of several earlier expeditions, bloodstained walls and overturned tables riddled with bullet holes bear witness to “unspeakable and sudden violence” (67). The biologist, not overly given to emotion, is yet haunted by these scenes, which sour her characteristic attachment to the landscape. “Nothing beautiful here fooled me anymore,” she writes. “Human lives had poured into this place over time, volunteered to become party to exile and worse. Under everything lay the ghastly presence of countless desperate struggles. Why did they keep sending us? Why did we keep going?” (78).

Even the antisocial biologist mourns the loss of human life and human connection within the inexorable logic of Area X; she also mourns, in her own quiet way, the loss of her husband. Her moments of dis-ease with the changes Area X brings about in her body and her world prevent VanderMeer’s trilogy from falling into thoughtless anti-humanism. The novels constantly remind the reader that there is much to value in the human world, much to lament in its passing. Notably, they also take for granted the diversity of the human species with regard to gender, race, sexuality, class, background, and other less categorical forms of difference. “Humanity” is not being glossed here as only the white heterosexual American world, as evinced by the range of VanderMeer’s cast of characters: an antisocial female scientist, a gay male lighthouse keeper, a multiracial Latino government agent, a black lesbian bureaucrat. The onslaught of Area X infects all their lives, and countless others’, with pain, confusion, and terror. VanderMeer’s trilogy, with its shifting points of view and emotionally nuanced characters, maintains a fundamental compassion toward all those who suffer from Area X. There is no gleeful celebration of the apocalypse here, no sense of justice at the violent overthrow of the reign of humankind.

What the series offers is, instead, acceptance, the apt title of the final volume: acceptance, if not exactly approval, of Area X and its transformative contamination of humankind. The borders have been breached; change is underway; the notion of a pristine anything (whether a pristine human species or a pristine wilderness) has become, more than ever, an impossible fantasy. The task facing human beings in this new world is not to quarantine the infecting force, as the Southern Reach tries to do, nor to seek a cure to reverse its effects, as the biologist’s husband might urge. It is instead to become part of the place, to let infections run their course, to reconcile themselves to the new kind of organisms Area X has made of them, with whatever dignity they can muster. It is, needless to say, a difficult, even impossible task; most of the series’ characters cannot face it. Only the biologist—she who has made a habit of secreting away sickness and evaporating into ecosystems—can conceive of acceptance as a viable strategy rather than a hopeless defeat. She is, as Mac Rogers writes, “the only hero equal to this story, VanderMeer’s one example of a way forward for humanity.”

It takes her—even her—a long time to reach acceptance. The trilogy’s third volume contains, as a kind of epilogue to Annihilation, the final journal pages of the biologist, recounting thirty years of fighting to stay human inside Area X. She can counter the spread of her infection, she learns, with pain; she writes circumspectly of the self-inflicted wounds she applies regularly as a kind of medicine, temporarily shoring up the borders of her waning humanity. Eventually, she ceases treatment; she lets the “brightness” take hold. What she becomes is something profoundly, magnificently other-than-human: a vast, amphibious creature who moves like the flow of lava and communicates in eerie moans, her body covered with hundreds of barnacle-encrusted craters and glowing, thick-lashed eyes “like flowers or sea anemones spread open” (Acceptance 493).

From an anthropocentric perspective, the biologist’s fate is a tragedy. The transformation of a woman into a lumbering leviathan represents the loss of all those qualities that make humanity special: bipedalism, manual dexterity, cognitive intelligence, rational thought, speech and language, technology, community. Yet VanderMeer’s text opens up space for a monster to be just another form of life: not necessarily worse or better than a human being, but simply different, with different capacities and functions. The biologist, in her human form, maintains an indiscriminate affinity for life in all its diversity. From that biophiliac perspective, what happens to her is not a perversion or debasement, but a metamorphosis; it allows her to inhabit Area X in novel ways, to make her home at land and sea, to perceive her environment more expansively than ever before. The place has impressed itself upon her; she has become part of it with an ease far greater than what she found in the human-dominated world.

The biologist’s final form confirms her as a creature of borderlessness. She becomes, in the eyes of one observer, “an animal, an organism that had never existed before or that might belong to an alien ecology. That could transition not just from land to water but from one remote place to another, with no need for a door in a border” (Acceptance 494). Her massive, mobile body overflows the boundaries proper to a human, a woman, a mammal, an individual. She is an organism who has ceased to maintain any border that might inhibit her biological development, even the parts of it that appear, from a normative human point of view, deeply unnatural. This, the story suggests, is what might come of letting borders be breached, letting infections take hold: not pollution but evolution, not sickness but glorious vitality. What the biologist helps bring about is not, after all, the end of the world, but the end of the Anthropocene; the border that finally crumbles is not merely the line between Area X and civilization, but the ideological border holding humans apart from and above the rest of the living world. Area X re-situates humans as organisms in an ecosystem—not masters, not users, but simply fellow beings engaged in the everyday work of being alive. VanderMeer’s trilogy does not shy away from the horrors of this speculative future. Yet the biologist serves as a figure of its exhilarating possibilities. Through her, the text considers how contamination is a necessary part of coexistence, exchange and adaptation the basis of survival. The threat to humanity cannot be contained, only accepted with more or less grace. If we were to allow what we think of as “our” world to be permeated by all those others we keep out, VanderMeer’s novels ask, what surprising transformations might result?

Works Cited

Masucci, Matthew. “Angry Eden: Hyperobjects, Plant Entelechy, and the Horror of Eco-Colonization in Jeff VanderMeer’s Southern Reach Trilogy.” Dark Nature: Anti-Pastoral Essays in American Literature in Culture. Ed. Richard J. Schneider. Lanham: Lexington Books, 2016. 171-184.

Onishi, Brian. “Terror and Terroir: Porous Bodies and Environmental Dangers.” Trespassing 6 (Winter 2017): 60-73.

Rogers, Mac. “The Illusion of Control.” Slate, 8 September 2014, http://www.slate.com/articles/arts/books/2014/09/jeff_vandermeer_s_southern_reach_trilogy_acceptance_annihilation_and_authority.html. Accessed 16 May 2017.

“Southern Reach Training: Fungus Safety (Protocol 3984SRT).” YouTube, uploaded by Mortimer Huckman, 19 February 2014, https://www.youtube.com/watch?v=K0sz2OnW5S4.

Tompkins, David. “Weird Ecology: On the Southern Reach Trilogy.” Los Angeles Review of Books, 30 September 2014, https://lareviewofbooks.org/article/weird-ecology-southern-reach-trilogy. Accessed 16 May 2017.

VanderMeer, Jeff. Area X: The Southern Reach Trilogy: Annihilation; Authority; Acceptance. New York: Farrar, Straus and Giroux, 2014.

VanderMeer, Jeff. “From Annihilation to Acceptance: A Writer’s Surreal Journey.” The Atlantic, 28 January 2015, https://www.theatlantic.com/entertainment/archive/2015/01/from-annihilation-to-acceptance-a-writers-surreal-journey/384884/. Accessed 16 May 2017.

Sophia Booth Magnone holds a PhD in Literature from the University of California, Santa Cruz. Her work investigates the possibilities of agency and community for nonhuman beings in speculative fiction, exploring intersections between systems of exclusion based on species difference and those based on gender, race, class, sexuality, and ability.

The Speculative Health series is edited by Matthew Wolf-Meyer.

Here, we explore this pendulum shift in public opinion poll results about the popularity of the ACA. We argue that, in fact, many pollsters and policy wonks never really understood the complicated assessments that people held of the ACA in the first place. A question about favorable or unfavorable views fails to capture the stakes of the ACA for those with and without health insurance. Poll data show that major reasons for disliking the health reform included increased costs, that it created too big a role for government, that it took the country in the “wrong direction” under President Obama, and that it did not go far enough in expanding coverage. Of course, in such polls respondents must choose among preselected options rather than being able to express their opinions in their own words. In addition, the way the results are aggregated and displayed erases the fact that many people hold multiple, overlapping, and often contradictory views simultaneously.

Based on ethnographic research with the newly and still uninsured in our forthcoming book Unequal Coverage: The Experience of Health Reform in the United Status, we found that when people criticized Obamacare, they did it for many different reasons that rarely issued from a cohesive ideological position. In addition to affordability and anti-Obama sentiments, our ethnographic research has also shown that people were dissatisfied because they felt left out of the law or felt that “others” (besides themselves) were benefiting more from the law. We also heard that deductibles were too high; that people experienced bureaucratic hurdles to enrollment; that not all doctors would accept the coverage; disagreement with the tax implications of the law; and that the website was too difficult to navigate. While some of these reasons are ideological, many of them are related to bureaucracy, price, the design of the law, and the issues with implementation. Furthermore, only a small minority of people in the United States (6%) ever actually got their health coverage through the ACA (20 million in 2016 out of a population of roughly 325 million).

As the contributors to this anthropological volume argue, the law became a flashpoint for battles over inequality, fairness, and the role of government. It also became a vehicle for generating and fanning resentment. Because the law was so overwhelmingly complex and access to health care is such a life and death issue; it evoked strong emotional reactions. Skillful politicians tapped into these emotions by bashing unpopular aspects of the law while still holding out the possibility that something better was possible (though that something was never well defined). Rather than dismissing Trump supporters as ignorant or self-destructive, as many liberal news outlets have done, we hold that critics of the ACA are just as rational, complex, and flawed as people anywhere and that if we want to know what motivates them and how they think about the world, we should probably talk to them.

We agree with anthropologist Jessica Smith that the media coverage of Trump voters was a “spectacle—one that entertained liberals by constructing an impossibly idiotic, illiberal rural electorate.” In the aftermath of the election, Trump voters have been cast as monolithic and blindly accepting of his entire project. Anthropologists would not tolerate this kind of caricaturing and lack of nuance in representations of most other peoples, but our discipline has often lagged behind in understanding interior others, like poor whites and rural residents in the United States. It is critical to understand that many white and working class rural voters are both exploited, insecure, and passed over by a changing economy and eager to latch on to narratives of racial resentment that exploited others in order to feel more secure. Furthermore, many people of color, especially in the south, were also left out of the law, some by design and others by the law’s uneven implementation. They too, have important critiques of health reform that defy simple ideological classification.

To illustrate some of the complexity in how individuals made sense of the ACA, take the case of Trina. She lives in a rural county in Florida, has a high school education, and has worked in service jobs for most of her adult life, only rarely having employer-sponsored coverage. At age 55, Trina earns $26,000 a year from her food service job at a long-term care facility. She also supports her husband, who is not currently working. Trina hadn’t had a full physical in about ten years. She mostly goes to the doctor when she has a cold that won’t go away and develops into something like bronchitis. Working with elderly patients, she doesn’t want to get anyone else sick or risk catching something from them.

Trina’s employer offers health coverage, but it is too expensive. So, when Trina heard about Obamacare plans from some of her co-workers, she got more information from a Blue Cross Blue Shield insurance broker and signed up. In 2016, she and her husband qualified for significant tax credits—their premium was $42 a month with no deductible. Despite this relatively affordable price, the family was living paycheck-to-paycheck, so that the smallest setback made insurance unaffordable. They ran into some financial problems in May of 2016 and stopped paying their premiums, so their coverage lapsed. “I could kick myself,” Trina said recounting how good her coverage was.

Trina and her husband were uninsured at the beginning of 2017 and didn’t anticipate gaining coverage again anytime soon. When she tried to sign up again in 2017, the premium for the same plan was $200 a month and her deductible was $6000. She was still getting help directly from a BCBS representative, so she might have qualified for more affordable coverage from other carriers and just not known it.

Her main concern, though, was not paying the tax penalty: “You know, now it’s up to $600 this year and that’s per person,” she said. “I don’t even think I’ll make that in income tax. So, that means that I’m going to be owing for something that I can’t afford to begin with, it’s like Catch-22.”

But then she went on to say that she was not mad that the government wanted her to have insurance: “I don’t mind the government telling me I have to have it, but you know all these prices have gone up and now you are saying you have to have it and if you don’t we’re going to fine you. You are between a rock and a hard place.”

Trina was critical of the individual mandate, not because it was an example of government overreach, but because there was no way that she could stay covered, receive a full income tax return, and continue to keep a roof over her head. It asked too much of her already strained finances to also buy health insurance when she was not accustomed to regularly using medical care and thought of herself as healthy. “Yes, I know someday I’m going to get sick and I’m not going to be able to gargle with salt water and make it go away, but you know that’s a risk—you know right now in order to keep a roof over my head. Electricity on, and stuff. I got to eat too.” Paying for insurance or eating, this was the choice that Trina faced.

So, when asked if she was optimistic or pessimistic after the election, she said she was optimistic. “I’m hoping it gets better. I’m feeling positive, so I know we are going for the better.” She was a Trump supporter and though she didn’t think she would gain access to affordable insurance coverage anytime soon, she did think that he would be able to get rid of the individual mandate and then at least she would have a little bit of extra money in her pocket.

At the end of the interview, Trina said she would like to see the U.S adopt a health care system like they have in Canada: “Healthcare available to all. I realize that’s going to raise the prices of other things, but your health is protected.”

*****

What would a poll would have told us about Trina’s assessment of the Affordable Care Act? Ethnographic interviewing shows that she has a complex, multifaceted, and rational position. She is against the ACA to the extent that the coverage was not affordable and she was penalized for being uninsured when she felt she couldn’t really afford the coverage. She is a Trump supporter, but not wildly against Obamacare. Her views were strongly shaped by her economic location and the real trade-offs she must make to cover her basic needs. She saw health insurance as a luxury just out of her reach. Nonetheless, she desired greater access to care for everyone and was willing to pay more for other things to have it. Trina, a Trump supporter, was actually in favor of a single-payer system similar to Canada’s. The static and binary representation of opinion that political poling relies upon wouldn’t tell us much about how Trina understands health care.

*****

Of course, Trina doesn’t represent everyone’s views. In the book we draw on hundreds of interviews to tease out the complicated assessments of the ACA held by those the law was supposed to help. This includes people who were excited to be covered for the first time and attended outreach events or utilized the website, only to find out they did not fit the criteria for Marketplace assistance and fell within the coverage gap.

Carlos is a 45-year old married father of two, who lives in a South Texas border county where almost one in three persons remain without health insurance, even after the ACA. On a Saturday morning, he and his family attended a health insurance outreach event at a local community health center, complete with games for the kids and a raffle to attract people from the surrounding community. After waiting in line to speak with an enrollment specialist, he discovered that he earns too little to qualify for insurance subsidies. He was confused by this, since he assumed the subsidy was designed for those who need a little assistance. What remained unstated was that Republicans in Texas had just blocked Medicaid for poor and working adults in their state.  In another state, he and his wife would have obtained coverage that Saturday morning.

Despite a strong desire for health care coverage – and a willingness to pay for the opportunity – Carlos is one of the many who have been excluded by design. They have been effectively shut out, due solely to the state in which they live. Texas is one of 19 states that has remained in opposition to the ACA, with state lawmakers rejecting the Medicaid expansion and leaving millions of low-income working adults without a coverage option. These individuals became caught in the “coverage gap,” in which their incomes exceeded their states’ Medicaid eligibility criteria but were too low to qualify them for subsidies to assist in purchasing insurance through the exchanges. As a result, a large portion of the population in some states has remained unaffected by the progress made through the ACA, because they were among the working poor making less than 100% of the federal poverty level. For people like Carlos, the ACA both reinforced existing and produced new forms of regional, economic, and ethnic inequality.

*****

The examples of Trina and Carlos show how necessary a grounded approach to understanding policy is, and why anthropologists should be at the table. Assessing simply a favorable or unfavorable view of the law prevents us from learning from the experiences of those the ACA was supposed to help. These are the very people who can provide nuanced evaluations of where the law worked and where it went wrong, if only we were willing to listen. People may not have been happy with every aspect of the ACA (like paying a fine, cumbersome enrollment processes, and coverage that is still too expensive), but they did want health coverage and most people do seem to think that the government needs to play a role in making that possible (despite what ideologues on the Right say and despite the far more limited role for government in the AHCA).

Had we been listening all along to how the ACA was impacting people’s lives, we might have been less surprised when attacking the law bolstered Trump’s appeal. In our ethnographic work we’ve learned at least three things about how people make sense of and evaluate the ACA. First, favorable or unfavorable isn’t nearly nuanced enough of a frame for understanding the Affordable Care Act’s achievements and failures. The people we spoke to had complex assessments and pointed to things they liked about the law as well as the areas in which it fell short. Second, we need to set aside simplistic narratives about critics of the ACA, such as that it is simply a racist reaction to President Obama or that rural people are too ignorant to understand that the law actually helps them. The ACA was a complex law that impacted people’s lives in contradictory ways. Third and finally, the law elicited feelings of inclusion and exclusion as many longed for the security of health insurance, yet still found themselves uninsured. As repeal looks more imminent, it makes sense that people’s complex assessments and strong feelings about inclusion and exclusion are bubbling to the surface.

Jessica Mulligan is Associate Professor of Health Policy and Management at Providence College. Her current research explores insurance, financial security, and health reform from the perspective of the newly insured and those who continue to lack coverage. She is co-editor of Unequal Coverage: The Experience of Health Care Reform in the United States (NYU Press, fall 2017). Her first book, Unmanageable Care: An Ethnography of Health Care Privatization in Puerto Rico was published by NYU Press in 2014.

To begin with, there seems to be very different understandings of health along party lines, either as a right or as a commodity. One side understands health care similar to a right, arguing for equity in access to health care based on the idea of a societal obligation towards those who can’t afford access to health care, arguing that health care access represents a way to provide equal opportunities to everyone. The other side sees health care as a commodity, something that each person can freely decide whether to acquire or not. Also, this argument goes, the government should and could not pick up the bill when it comes to cover health care for all. That, the right argues, would be a government overstep with no constitutional basis.

Things are further complicated by identity politics, which is one of the most complex issues to deal with in relation to political polarization. Because the discussion becomes about who you are, and things are framed in an “us vs. them” type of mentality, little room is left for much need sensible debates on actual policies and bills on healthcare. No one denies that the healthcare system needs improvement, debates on how to best tackle its deficiencies are not only important but necessary. But trying to repeal the health law and replace it later does not seem to be the answer; such an idea exemplifies the extent to which this has become a matter of political win or lose.

Importantly, identity politics and polarization also mean that politicians can -in practice- mobilize supporters without being forced to discuss or account for their actions. It seems counterintuitive that Republicans would push for a new healthcare bill even though twenty two fewer million Americans would lose insurance in ten years’ time, compared with the current health bill. Further, it is precisely the president’s  supporters who suffer the most by this change. Therefore, the GOP seems to be counting on the tremendous power of identity politics to gain and maintain support, with the goal of reducing the fiscal cost of the health bill to be able to cut taxes. This goal, which has been made explicit, also merits discussion and debate.

Social scientists are in the best position to understand and inform what is happening with the healthcare bill. Economists tend to assume that people will make rational decisions that maximize their well-being. From this position they also emphasize the trade-offs involved in any health system decision; some examples of such trade-offs include the cost of innovation – creating live saving health technology vs. the access barriers this very same innovation tends to create (because it is very costly), or thinking in terms of limited resources, the tradeoff that exists between coverage and quality for any health system. Social psychologists emphasize the central motivational force of social identity and its power to shape human behavior. The last election cycle showed that identity can matter more than other wellbeing considerations, including economic wealth, but little has been said about how this motivational force should be used or channeled. Furthermore, it is far from established that ethnicity is necessarily the “natural” or even the most powerful source of identity. Medical anthropology can provide insights to inform the current healthcare system debate. Among those, conceptual tools and a large body of evidence that informs how and what value is assigned to health in different local worlds, and the power struggles that define who is deserving of health and healthcare coverage. It seems more important than ever to engage people within and outside the discipline in these debates.

Medical Humanities

SPECIAL ISSUE: Communicating Mental Health

Introduction: historical contexts to communicating mental health

Rebecca Wynter and Leonard Smith

Contemporary discussions around language, stigma and care in mental health, the messages these elements transmit, and the means through which they have been conveyed, have a long and deep lineage. Recognition and exploration of this lineage can inform how we communicate about mental health going forward, as reflected by the 9 papers which make up this special issue. Our introduction provides some framework for the history of communicating mental health over the past 300 years. We will show that there have been diverse ways and means of describing, disseminating and discussing mental health, in relation both to therapeutic practices and between practitioners, patients and the public. Communicating about mental health, we argue, has been informed by the desire for positive change, as much as by developments in reporting, legislation and technology. However, while the modes of communication have developed, the issues involved remain essentially the same. Most practitioners have sought to understand and to innovate, though not always with positive results. Some lost sight of patients as people; patients have felt and have been ignored or silenced by doctors and carers. Money has always talked, for without adequate investment services and care have suffered, contributing to the stigma surrounding mental illness. While it is certainly ‘time to talk’ to improve experiences, it is also time to change the language that underpins cultural attitudes towards mental illness, time to listen to people with mental health issues and, crucially, time to hear.

The presentation of mental disturbance in modern Scottish literature (open access)

Allan Beveridge

The subject of madness features throughout world literature, but the literature of modern Scotland appears to be especially preoccupied with it. This paper gives a brief overview of the ways in which madness is represented in modern Scottish literature and the different artistic functions it performs. It will consider the subject on a thematic basis. First, there are accounts by writers who have experienced mental turmoil themselves. Second, there is the theme of the ‘Narrative of personal crisis’ which depicts in fictional form an individual’s journey through madness. Third, there is the theme of the ‘Gothic or divided selves’. The fourth theme is that of the ‘Female voice’ and the last is that of ‘Outsiders and holy fools’, whose existence is to unsettle the beliefs of a wider society.

‘Trapped in the labyrinth’: exploring mental illness through devised theatrical performance

Paul Patterson and Persephone Sextou

Mental health difficulties remain a major source of burden and distress for individuals, families, health and social care providers with stigma a key target for educational campaigns attempting to improve care pathways and access to support. Stigma is a multifaceted concept having a range of drivers including shame and is thought to act as a barrier to successful help seeking and engagement with support services. The current paper explores some of the salient themes that emerged from a British university drama project on the impact of symptoms and behaviours associated with a severe mental health condition on a young couple’s relationship and reflects on the opportunities for connection with an audience provided by the medium and experience. It is suggested that enabling the impact of mental ill health to be explored in a protected environment such as theatre can allow for reflection and empathy to develop, with potential for positive impact on awareness understanding and stigma. Elements of the drama setting and narrative are explored, and analogies are made with the emerging literature on post-traumatic growth.

Heritage and Stigma. Co-producing and communicating the histories of mental health and learning disability (open access)

Rob Ellis

University engagement with mental health services has traditionally been informed by the vocational and pedagogical links between the two sectors. However, a growth in the interest in public history and in the history of mental healthcare has offered new opportunities for those in the humanities to engage new audiences and to challenge perceptions about care in the past. The introduction of the ‘impact agenda’ and related funding streams has further encouraged academics to contribute to historical debates, and to those concerning current services. One such example of this is the Arts and Humanities Research Council funded Heritage and Stigma project at the University of Huddersfield, which was conceived to support mental health and learning disability charities in the exploration and dissemination of their own histories. Using this project as a case study, this paper will draw on primary source material to reflect on the opportunities and challenges of working in partnership with such groups. In particular, it will consider the need to address issues of stigma and exclusion in tandem with a critical understanding of the moves to ‘community care’ instigated by landmark legislation in the form of the 1959 Mental Health Act. Overall, it provides evidence of an inclusive, coproductive model of design and highlights the positive contribution to communicating mental health made by those based in the humanities.

‘She sits all day in the attitude depicted in the photo’: photography and the psychiatric patient in the late nineteenth century

Katherine D.B. Rawling

The links between mental state and art in all its various forms and media have long been of interest to historians, critics, artists, patients and doctors. Photographs of patients constitute an extensive but largely unexplored archive that can be used to recover patient experience in the late nineteenth and early twentieth century. The camera and the photograph became tools to communicate information about mental ill health between doctors, their patients and their colleagues. They were published in textbooks and journals, exhibited, exchanged and pasted into medical case books alongside case notes. But they were also used by patients to communicate their own experiences, identity and sense of self. This article uses published and case book photographs from c. 1885–1910 to examine the networks of communication between different stakeholders and discourses.

A crisis of meaning: can ‘schizophrenia’ survive in the 21st century?

Jerry Tew

Both within clinical and wider societal discourses, the term ‘schizophrenia’ has achieved considerable potency as a signifier, privileging particular conceptual frames for understanding and responding to mental distress. However, its status has been subject to instability, as it has lacked indisputable biological correlates that would anchor its place within the canon of medical diagnosis. Informed by a semiotic perspective, this paper focuses on its recent history: how ‘schizophrenia’ has been claimed, appropriated and contested—and how this connects with its earlier history of signification. It also explores how the dominance of this signifier has influenced the ways in which people with the diagnosis may find themselves constructed in their interactions with professionals, family and wider society, and hence how they may come to see themselves. It is argued that, from a point in the 1990s when ‘schizophrenia’ had achieved an almost iconic status, the term is now subject to greater instability, with concerns and challenges being raised from both within and outside psychiatry. On the one hand, this uncertainty has triggered a ‘calls to arms’ from those within the psychiatric establishment who see diagnoses such as ‘schizophrenia’ as crucial to their professional identity and status. On the other hand, this has created spaces for new conversations and alliances between elements within neurology, psychiatry, social work and other professions, and between these and service users. Some of these conversations are casting doubt on the validity and utility of ‘schizophrenia’ as a construct, and are beginning to posit alternative regimes of signification.

If psychosis were cancer: a speculative comparison (open access)

Michael Larkin, Zoë Boden, and Elizabeth Newton

Recently, health policy in the UK has begun to engage with the concept of ‘parity of esteem’ between physical and mental healthcare. This has led one recent initiative to improve service provision for first episode psychosis, which aims to bring it into line with some of the principles underpinning good practice in cancer care. In this paper, we consider some of the metaphorical consequences of likening psychosis to cancer. While we find the comparison unhelpful for clinical purposes, we argue that it can be a helpful lens through which to examine service provision for psychosis in young people. Through this lens, specialist community-based services would appear to compare reasonably well. Inpatient care for young people with psychosis, on the other hand, suffers very badly by comparison with inpatient facilities for teenage cancer care. We note some of the many positive features of inpatient cancer care for young adults, and—drawing upon previous research on inpatient psychiatric care—observe that many of these are usually absent from mental health facilities. We conclude that this metaphor may be a helpful rhetorical device for communicating the lack of ‘parity of esteem’ between mental and physical healthcare. This inequity must be made visible in health policy, in commissioning, and in service provision.

Listen and learn: engaging young people, their families and schools in early intervention research (open access)

Charlotte Connor on behalf of Collaboration for Leadership in Applied Health Research and Care West Midlands (CLAHRC-WM) Youth Mental Health

Recent policy guidelines highlight the importance of increasing the identification of young people at risk of developing mental health problems in order to prevent their transition to long-term problems, avoid crisis and remove the need for care through specialist mental health services or hospitalisation. Early awareness of the often insidious behavioural and cognitive changes associated with deteriorating mental well-being, however, is difficult, but it is vital if young people, their families and those who work with them are to be fully equipped with the skills to aid early help-seeking. Our early intervention research continues to highlight the necessity of engaging with and listening to the voices of young people, families and those who work with children and young people, in developing greater understanding of why some young people may be more at risk in terms of their mental health, and to provide children and young people with the best mental health support we can. Collaborative working with young people, their families and those who work with them has been an essential dimension of our youth mental health research in Birmingham, UK, enabling us to listen to the personal narratives of those with lived experience and to work alongside them. This paper highlights some of our key studies and how we have endeavoured to make intra-agency working successful at each stage of the research process through increasing use of digital and youth-informed resources to engage young people: a methodology which continues to inform, guide and develop our early intervention research and implementation.

Identity, law, policy and Communicating Mental Health

Peter Bartlett

This paper reflects on the special edition, Communicating Mental Health, from the perspective of a legal academic with an interest in the service user rights and in United Nations Convention on the Rights of Persons with Disabilities. It is argued that the special edition demonstrates the breadth of the medical model but also that the medical model remains firmly in place in academic understanding of mental disability. The paper questions what this means for identity formation of people with lived experience of mental disability and how we should conceptualise mental disability in the future.

New Genetics and Society

The politics of biomedical platforms: controversy around the molecularization of cytogenetics in prenatal diagnosis

Mauro Turrini

The introduction of a new technique based on molecular cytogenetics (the comparative genomic hybridization microarray, Chromosomal Micro-Array) in prenatal diagnosis is here used as an occasion to politically elaborate Cambrosio’s and Keating’s framework of “biomedical platform.” The uncertainty generated by molecularization leaves the field open for two different modalities of implementation: using targeted microarrays to completely replace traditional karyotyping versus using genome-wide analysis of chromosomal anomalies only in at-risk pregnancies. Retracing the global scientific controversy on this issue and, particularly, the heated debate that has taken place in Italy, the paper intends to analyze the rise of a biomedical platform in prenatal diagnosis as a multi-layered phenomenon. Diverging epistemological strategies to deal with uncertainty, professional interests, relationship between medical practice, innovation and research, and patient subjectivities interact with each other, by shedding light on the inherent political dimension in the epistemological and material of an emerging biomedical platform.

“Participating means accepting”: debating and contesting synthetic biology

Morgan Meyer

This article analyses opposition to public debates. In doing so, the article builds upon the tradition of analyzing controversies by symmetrically describing the advocates and the opponents of public debates. First, the public debates on synthetic biology will be placed in their wider political and institutional context. The call for a “serene” debate by the French public authorities will be retraced and its genealogy vis-à-vis previous controversies (i.e. on genetically modified organisms (GMOs) and nanotechnology) will be elucidated. The article then describes how the group Pièces et main d’œuvre (PMO) obstructed a public debate on synthetic biology, an obstruction that will be analyzed by mobilizing and extending the notion of divisible versus indivisible conflicts. But the article will also move beyond the symmetrical analysis of a controversy by discussing one of the criticisms raised by PMO, that some researchers are “sociologists of acceptability.” The notions of divisibility, indivisibility and what I call “inversibility” will be used to reflect upon the positionality of social scientists and to offer a constructive view for a sociology of acceptability.

Pride and concern: differences between sperm and egg donors with respect to responsibility for their donor-conceived offspring

Margaret K. Nelson and Rosanna Hertz

Comparative research on sperm donors and egg donors in the United States suggests that while men view themselves as fathers of their offspring, women do not view themselves as mothers. Comparative research suggests as well that men and women are equally interested in contact with offspring, equally curious about them, and equally likely to hold themselves responsible for those offspring. This paper re-examines these differences and similarities using data from a survey of donors who registered on a third-party website with hopes of having some contact with their genetic offspring. Our findings suggest that women and men offer similar reasons for donating and similar assessments of the experience. Yet, the two groups have developed quite different patterns of interest in their offspring. The men create a sense of “prideful lineage” rather than fatherhood. The women create a pattern of feeling that involves “concerned responsibility” rather than motherhood.

Spitting images: remaking saliva as a promissory substance

Mette Kragh-Furbo and Richard Tutton

Of the bodily substances in which STS scholars, anthropologists, sociologists, and medical historians have been interested, saliva has arguably been overlooked. Yet, in the past 20 years, saliva has become important to the development of consumer genetic tests. Historically, expectoration has been associated with the spread of disease and social indecency, but when the personal genomics company 23andMe began hosting spit parties in 2007, the act of spitting was transformed into an act of self-empowerment through which the individual gained new health information and saliva turned into a new biological source for measuring health and illness. Attending to saliva’s social meanings over time, and by analyzing 23andMe “unboxing” YouTube videos, we argue that saliva has become a promissory substance whose place is no longer reserved only for the inner spaces of the body, but circulates outside the body, forming an important part of the contemporary bioeconomy.

Science as Culture

Problematisations of Complexity: On the Notion and Production of Diverse Complexities in Healthcare Interventions and Evaluations (open access)

Tineke Broer, Roland Bal, and Martyn Pickersgill

Within the literature on the evaluation of health (policy) interventions, complexity is a much-debated issue. In particular, many claim that so-called ‘complex interventions’ pose different challenges to evaluation studies than apparently ‘simple interventions’ do. Distinct ways of doing evaluation entail particular ontologies and epistemologies of complexity. They differ in terms of whether they define complexity as a quantitative trait of interventions, whether they see evaluation as part of or outside the intervention, and whether complexity can be regarded as an emergent property of the intervention and its evaluation. In practice, evaluators and commissioners of large health care improvement programmes rely on different, sometimes contradictory, repertoires about what it means to conduct a ‘good’ evaluation. This is an ongoing matter negotiated between and among commissioners, researchers, and—sometimes—programme managers. In particular, notions of evaluability, usefulness and distance/independence are problematised in different ways and with diverse consequences, which, in turn, produce other notions and layers of complexity such as temporal, institutional and affective complexities. When (social science) researchers claim that one method or another is better able to grasp complexity, they elide the issue that any methodological choice emphasises some complexities and lets others fade into the background. Analysing the practicalities and emotions involved in evaluation studies opens up the notion of complexity to analytical scrutiny, and suggests a basis for co-theorising between biomedical, public health and social scientists (including Science and Technology Studies scholars).

Contesting a Pandemic: The WHO and the Council of Europe

Sudeepa Abeysinghe

Contemporary risks are often understood as fundamentally uncertain. This uncertain status can be mobilized within political debates surrounding risks. Such a challenge serves to destabilize scientific claims. The World Health Organization’s (WHO) management of the 2009/10 spread of the H1N1 virus became a site of one such contestation. Debate within the Council of Europe particularly served to criticize the action of the WHO. This resulted in a definitional and policy contestation between the two institutions. The WHO accounted for its actions through allusions to (seemingly stable) scientific facts, using epidemiological evidence of influenza and its management based on normal science. In contrast, in criticizing public expenditure and panic, the Council of Europe critics problematized the stability of the science employed by the WHO. This included fundamental aspects of scientific knowledge such as the measurability of morbidity and mortality caused by H1N1 and the effect of vaccination against influenza viruses. This criticism relied upon the ability to destabilize the WHO’s scientific knowledge, a process made possible through understandings of the uncertain nature of the science of risk (post-normal science). The case study illustrates that potential for previous-established and seemingly stable scientific facts to become destabilized and problematized during contestations of risk management.

The Genealogy of “Empirical Post-structuralist” STS, Retold in Two Conjunctures: The Legacy of Hegel and Althusser

Johan Söderberg

Recent discussions in science and technology studies (STS) about the risks of science and technology have led to political economy occupying centre stage. Closely related to political economy as a field of investigation are a number of overarching concepts, such as class, capitalism and interest. However, reliance on such concepts is rejected in post-Actor Network Theory STS. This stand-off over overarching categories can be traced back to two conjuntures in the genealogy of STS. First, the influence of Hegel and his concept of “totality”; and second, the influence from anti-hegelian French epistemology with its celebration of the opposite concept, that of “multiplicity”.

Autistic Heterogeneity: Linking Uncertainties and Indeterminacies (open access)

Gregory Hollin

Autism is a highly uncertain entity and little is said about it with any degree of certainty. Scientists must, and do, work through these uncertainties in the course of their work. Scientists explain uncertainty in autism research through discussion of epistemological uncertainties which suggest that diverse methods and techniques make results hard to reconcile, ontological uncertainties which suggest doubt over taxonomic coherence, but also through reference to autism’s indeterminacy which suggests that the condition is inherently heterogeneous. Indeed, indeterminacy takes two forms—an inter-personal form which suggests that there are fundamental differences between individuals with autism and an intra-personal form which suggests that no one factor is able to explain all features of autism within a given individual. What is apparent in the case of autism is that scientists put uncertainty and indeterminacy into discussion with one another and, rather than a well-policed epistemic-ontic boundary, there is a movement between, and an entwinement of, the two. Understanding scientists’ dialogue concerning uncertainty and indeterminacy is of importance for understanding autism and autistic heterogeneity but also for understanding uncertainty and ‘uncertainty work’ within science more generally.

From Standardization to Adaptation: Clinical Trials and the Moral Economy of Anticipation

Catherine M. Montgomery

Hailed as the gold standard, the randomized controlled trial (RCT) occupies a hegemonic position at the top of evidence-based medicine’s hierarchy of knowledge. It is testament to the methodology’s capacity for standardization that it can so readily be spoken of in the singular: the RCT. Under what conditions, then, is it possible to speak of change in the gold standard? Since the 1950s, alternative versions of the RCT have been advocated for under the banner of ‘adaptive design’. Adaptive designs allow investigators to make pre-planned changes to a trial on the basis of accruing information while the experiment is ongoing. Initially a niche topic of methodological debate among biostatisticians, the approach is becoming widespread in mainstream drug development. A genealogical analysis exposes the discursive moves used to justify and popularize adaptation, from a focus on patient well-being and the greater good in the 1960s and 1970s, to efficiency and virtualism in the 1990s and 2000s. Changing discourses of time and patienthood have facilitated a move away from standardization as the singular logic of trials towards an appreciation of flexibility, undergirded by probabilistic methodologies. Adams et al.’s [(2009). Anticipation: Technoscience, life, affect, temporality, Subjectivity, 28, pp. 246–265] conceptual framework of anticipation illuminates this evolving moral economy of medical research, in which modes of knowledge production which claim to know the future are supplanting the traditional certainties of fixed and standardized experimental designs. Predictable uncertainty is the currency of this emerging economy, which capitalizes on computer simulation and ever more sophisticated tools of prediction to leverage credibility.

Social Science and Medicine

“I started working because I was hungry”: The consequences of food insecurity for children’s well-being in rural Ethiopia

Virginia Morrow, Yisak Tafere, Nardos Chuta, and Ina Zharkevich

Food insecurity, the state of being without reliable access to a sufficient quantity of safe, nutritious food, is a persistent problem in rural Ethiopia. However, little qualitative research has explored how food insecurity affects children over time, from their point of view. What are the effects of economic ‘shocks’ such as illness, death, loss of livestock, drought and inflation on availability of food, and children’s well-being? To what extent do social protection schemes (in this case, the Productive Safety Net Programme) mitigate the long-term effects of food insecurity for children? The paper uses a life-course approach, drawing on analysis of four rounds of qualitative longitudinal research conducted in 2007, 2008, 2011 and 2014, with eight case study children, as part of Young Lives, an ongoing cohort study. Children’s descriptions of the importance of food and a varied diet (dietary diversity) in everyday life were expressed in a range of qualitative methods, including interviews, group discussions and creative methods. The paper suggests that while the overall picture of food security in Ethiopia has improved in the past decade, for the poorest rural families, food insecurity remains a major factor influencing decisions about a range of matters – children’s time allocation, whether to continue in school, whether to migrate for work, and whether they marry. The paper argues that experiences of food insecurity need to be understood holistically, in relation to other aspects of children’s lives, at differing stages of the life-course during childhood. The paper concludes that nutritional support beyond early childhood needs to be a focus of policy and programming.

Performing boundary work: The emergence of a new practice in a hybrid operating room

Kajsa Lindberg, Lars Walter, and Elena Raviola

This paper addresses the processes of boundary work, in relation to the introduction of new technology, unfolding during the emergence of new medical practices. Inspired by Gieryn’s fluid and practical view of boundaries and boundary work, and by Actor-Network Theory’s description of scripting processes, we study the processes of negotiating and (re-)constructing boundaries in order to reveal both the interactions between different kinds of boundary work and their situatedness in the context of the emerging practice. We conducted a longitudinal and qualitative study of a generic Hybrid Operating Room at a Swedish university hospital, where sophisticated imaging devices are combined with open surgery procedures in a single room; consequently, medical requirements regarding radiology, surgery and anesthesia, as well as the specificities of the new technology, all need to be met at the same time. The study shows how the visibility of boundaries is a result of as well as a condition for boundary work, how boundary work is a dynamic and iterative process, and how it unfolds in a recursive relationship between practice and boundaries.

Health policy in the concertación era (1990–2010): Reforms the chilean way

María Soledad Martinez-Gutierrez, and Cristóbal Cuadrado

The Chilean health system has experienced important transformations in the last decades with a neoliberal turn to privatization of the health insurance and healthcare market since the Pinochet reforms of the 1980s. During 20 years of center-left political coalition governments several reforms were attempted to regulate and reform such markets. This paper analyzes regulatory policies for the private health insurance and health care delivery market, adopted during the 1990–2010 period. A framework of variation in market types developed by Gingrich is adopted as analytical perspective. The set of policies advanced in this period could be expected to shift the responsibility of access to care from individuals to the collective and give control to the State or the consumers vis a vis producers. Nevertheless, the effect of the implemented reforms has been mixed. Regulations on private health insurers were ineffective in terms of shifting power to the consumer or the state. In contrast, the healthcare delivery market showed a trend of increasing payers’ and consumers’ control and the set of implemented reforms partially steered the market toward collective responsibility of access by creating a submarket of guaranteed services (AUGE) with lower copayments and fully funded services. Emerging unintended consequences of the adopted policies and potential explanations are discussed. In sum, attempts to use regulation to improve the collective dimension of the Chilean health system has enabled some progress, but several challenges had persisted.

Culture and depression in global mental health: An ecosocial approach to the phenomenology of psychiatric disorders

Laurence J. Kirmayer, Ana Gomez-Carrillo, and Samuel Veissière

Depression is a major focus of concern in global mental health, with epidemiological surveys indicating high prevalence rates worldwide (Ferrari et al., 2013a). Estimates of the global burden of depression in terms of disability, quality of life, and economic impact have been used to argue for scaling up the detection and treatment of depression as a public health and development priority in low and middle-income countries (Chisholm et al., 2016; Patel, 2017). These projections, however, are based on limited data and make many assumptions about the generalizability of findings across populations. While epidemiological research suggests there is substantial cross-cultural variation in the prevalence and symptomatology of depression (Ferrari et al., 2013b; Kessler and Bromet, 2013), there is evidence that a syndrome similar to major depressive disorder can be identified across diverse cultural contexts (Kleinman and Good, 1985; Kirmayer and Jarvis, 2006; Steel et al., 2014).

In a useful contribution, Haroz and colleagues (Haroz et al., 2017) reviewed the qualitative literature on cultural variations in depression to gauge the extent to which current diagnostic criteria fit the experience of people in diverse contexts. They found significant cultural variation and call for an expanded research program to explore the meaning and significance of these cultural differences for our understanding of mental health. This is crucial for current efforts to address global inequities in mental health and to make sense of claims of a global “epidemic” of depression (Baxter et al., 2014).

In this commentary, we examine the methods and findings of Haroz and colleagues’ study and discuss implications for future research on depression and the development of interventions in global mental health.

Patient engagement at the margins: Health care providers’ assessments of engagement and the structural determinants of health in the safety-net

Mark D. Fleming, Janet K. Shim, Irene H. Yen, Ariana Thompson-Lastad, Sara Rubin, Meredith Van Natta, and Nancy J. Burke

Increasing “patient engagement” has become a priority for health care organizations and policy-makers seeking to reduce cost and improve the quality of care. While concepts of patient engagement have proliferated rapidly across health care settings, little is known about how health care providers make use of these concepts in clinical practice. This paper uses 20 months of ethnographic and interview research carried out from 2015 to 2016 to explore how health care providers working at two public, urban, safety-net hospitals in the United States define, discuss, and assess patient engagement. We investigate how health care providers describe engagement for high cost patients—the “super-utilizers” of the health care system—who often face complex challenges related to socioeconomic marginalization including poverty, housing insecurity, exposure to violence and trauma, cognitive and mental health issues, and substance use. The health care providers in our study faced institutional pressure to assess patient engagement and to direct care towards engaged patients. However, providers considered such assessments to be highly challenging and oftentimes inaccurate, particularly because they understood low patient engagement to be the result of difficult socioeconomic conditions. Providers tried to navigate the demand to assess patient engagement in care by looking for explicit positive and negative indicators of engagement, while also being sensitive to more subtle and intuitive signs of engagement for marginalized patients.

Sadness or depression: Making sense of low mood and the medicalization of everyday life

Christian Bröer and Broos Besseling

This research focusses on low mood as a generic category in everyday social interactions, outside the clinical realm and among non-patients. We examine if and how a clinical depression label and treatment are employed when low mood occurs in everyday life, which enables us to analyze the extent and content of medicalization and brings to the fore the interactional mechanisms and cultural concerns that potentially drive medicalization. The analysis is based on 316 observations of everyday life in the Netherlands. We observed and recorded interactions in which low mood was spontaneously expressed.

Our paper shows that the clinical depression label resonates widely even if low mood is not fully medicalized. People de-medicalize low mood, and low mood can be un-medicalized. Our analysis thus suggests that dominance is not achieved, which nuances Horwitz and Wakefield’s claim that the clinical category of depression has come to encompass all forms of low mood. Moreover, uncertainties about the meaning of low mood and about the depression label remain pragmatic concerns of everyday life.

The cultural norm of happiness and active citizenship are very prominent in everyday life across medicalized and un-medicalized interactions. These norms thus seem to be a necessary but insufficient condition for medicalization. While pragmatic concerns do not seem to trigger medicalization either, one specific type of concern is consistently related to medicalization: relational conflicts.

In sum, the cultural construction of low mood is not dominated by a single medical approach; however, it mirrors the diversity and uncertainties within and around the medical field.

Controversies about cervical cancer screening: A qualitative study of Roma women’s (non)participation in cervical cancer screening in Romania (open access)

Trude Andreassen, Elisabete Weiderpass, Florian Nicula, Ofelia Suteu, Andreea Itu, Minodora Bumbu, Aida Tincu, Giske Ursin, and Kåre Moen

Romania has Europe’s highest incidence and mortality of cervical cancer. While a free national cervical cancer-screening programme has been in operation since 2012, participation in the programme is low, particularly in minority populations. The aim of this study was to explore Roma women’s (non)participation in the programme from women’s own perspectives and those of healthcare providers and policy makers. We carried out fieldwork for a period of 125 days in 2015/16 involving 144 study participants in Cluj and Bucharest counties. Fieldwork entailed participant observation, qualitative interviewing and focus group discussions. A striking finding was that screening providers and Roma women had highly different takes on the national screening programme. We identified four fundamental questions about which there was considerable disagreement between them: whether a free national screening programme existed in the first place, whether Roma women were meant to be included in the programme if it did, whether Roma women wanted to take part in screening, and to what degree screening participation would really benefit women’s health. On the background of insights from actor-network theory, the article discusses to what degree the programme could be said to speak to the interest of its intended Roma public, and considers the controversies in light of the literature on patient centred care and user involvement in health care. The paper contributes to the understanding of the health and health-related circumstances of the largest minority in Europe. It also problematizes the use of the concept of “barriers” in research into participation in cancer screening, and exemplifies how user involvement can potentially help transform and improve screening programmes.

“How can anybody be representative for those kind of people?” Forms of patient representation in health research, and why it is always contestable

Kath Maguire and Nicky Britten

Different discourses that co-exist within the world of patient and public involvement in health and social care mirror a tangle of historical, social, political and theoretical roots. These range from the radical activism, born of civil rights movements, to a more passive model in which patients are the recipients of information. This paper explores the concept of ‘representation’ and the ways the concept is used by people serving as ‘patient’ or ‘lay’ representatives in a range of roles within research projects, funding bodies and academic institutions. We address the issue of why the representativeness of those involved is contestable. Drawing on qualitative research and engaged practice as well as on literature from social and political sciences we question how people conceptualise their own and their fellows’ acts of representation. In doing this we identify nine different conceptualisations of what it is to represent and use these to explore how judgements are made about what can count as legitimate forms of representation.

Finding joy in poor health: The leisure-scapes of chronic illness

Julia McQuoid

Globally, increasing numbers of people face the challenge of enjoying life while living with long-term illness. Little research addresses leisure participation for people with chronic illness despite its links with mental and physical health and self-rated quality of life. I use a space-time geographical approach to explore experiences with leisure in everyday life for 26 individuals with chronic kidney disease (CKD) in Australia. I examine ways in which the spatial and temporal characteristics of illness management and symptoms shape where, when, and how participants can enjoy leisure, focusing on: 1) logistical conflicts between illness and leisure; 2) rhythmic interferences with the force of habit in skilful leisure performance; and 3) absorbing experiences of encounter with self and place through leisure. Data were collected from 2013 to 2014. Participants kept diaries over two sample days and then participated in semi-structured interviews. Findings show that the voluntary nature of leisure offered participants important benefits in coping with and managing illness over the long-term, including opportunities to experience greater sense of control, an alternative experience of one’s body to the ‘sick body’, and knowledge creation that supports adaptation to the uncertainties of illness trajectories. The ability to engage in meaningful leisure was constrained by the shaping forces of illness symptoms and management on participants’ leisure-scapes. Illness treatment regimens should therefore be adapted to better accommodate leisure participation for chronically ill patients, and leisure should be explicitly incorporated into illness management plans negotiated between patients and health practitioners. Finally, greater understanding of the transformative capacity of habit in activities of experimentation and play may have wider-reaching implications for leisure’s potential applications in public health. Leisure should be taken seriously as a vehicle for enhancing wellbeing and adaptation to life with long-term illness.

Social Studies of Science

SPECIAL ISSUE: Breaking Scientific Networks

A long history of breakdowns: A historiographical review

Dániel Margócsy

The introduction to this special issue argues that network breakdowns play an important and unacknowledged role in the shaping and emergence of scientific knowledge. It focuses on transnational scientific networks from the early modern Republic of Letters to 21st-century globalized science. It attempts to unite the disparate historiography of the early modern Republic of Letters, the literature on 20th-century globalization, and the scholarship on Actor-Network Theory. We can perceive two, seemingly contradictory, changes to scientific networks over the past four hundred years. At the level of individuals, networks have become increasing fragile, as developments in communication and transportation technologies, and the emergence of regimes of standardization and instrumentation, have made it easier both to create new constellations of people and materials, and to replace and rearrange them. But at the level of institutions, collaborations have become much more extensive and long-lived, with single projects routinely outlasting even the arc of a full scientific career. In the modern world, the strength of institutions and macro-networks often relies on ideological regimes of standardization and instrumentation that can flexibly replace elements and individuals at will.

A fragile assemblage: Mutant bird flu and the limits of risk assessment

Andrew Lakoff

This paper examines the recent public controversy sparked by the laboratory creation of a strain of highly pathogenic avian influenza transmissible among mammals. The contours of the controversy can be understood by tracking the assemblage of actors, institutions and devices gathered together in response to the governmental problem of how to manage emerging diseases. The grouping is tenuously held together by a shared commitment to the project of ‘pandemic preparedness’. However, as the controversy unfolds, it becomes clear that the main actors involved do not share a common understanding of the problem to be addressed by pandemic preparedness, and the assemblage threatens to decompose. At the center of the dispute is the question of how to assess the risks and benefits of research in a field characterized by urgency and uncertainty.

The missing, the martyred and the disappeared: Global networks, technical intensification and the end of human rights genetics

Lindsay A. Smith

In 1984, a group of Argentine students, trained by US academics, formed the Argentine Forensic Anthropology Team to apply the latest scientific techniques to the excavation of mass graves and identification of the dead, and to work toward transitional justice. This inaugurated a new era in global forensic science, as groups of scientists in the Global South worked outside of and often against local governments to document war crimes in post-conflict settings. After 2001, however, with the inauguration of the war on terror following the September 11^th attacks on the World Trade Center in New York, global forensic science was again remade through US and European investment to increase preparedness in the face of potential terrorist attacks. In this paper, I trace this shift from human rights to humanitarian forensics through a focus on three moments in the history of post-conflict identification science. Through a close attention to the material semiotic networks of forensic science in post-conflict settings, I examine the shifting ground between non-governmental human rights forensics and an emerging security- and disaster-focused identification grounded in global law enforcement. I argue that these transformations are aligned with a scientific shift towards mechanized, routinized, and corporate-owned DNA identification and a legal privileging of the right to truth circumscribed by narrow articulations of kinship and the body.

Sociology of Health and Illness

A day in the life of a Ménière’s patient: understanding the lived experiences and mental health impacts of Ménière’s disease

Sarah L. Bell, Jessica Tyrrell, and Cassandra Phoenix

Concepts of social practice are increasingly being used to understand experiences of everyday life, particularly in relation to consumption and healthy lifestyles. This article builds on this in the context of lives disrupted and reshaped by chronic illness. It uses social practice theory to examine the lived experiences of individuals with Ménière’s disease; a long-term progressive vestibular disorder, defined by episodes of severe and debilitating vertigo, aural fullness, tinnitus and sensorineural hearing loss. Drawing on the findings of 20 in-depth narrative interviews with Ménière’s patients, and eight spousal/partner interviews, we explore the impacts of the condition on sensory, temporal, spatial and social dimensions of the body. In doing so, we highlight the intensely embodied sensory and emotional work required to maintain connections between the ‘competences’, ‘materials’ and ‘meanings’ that constitute and sustain the performance of both mundane and meaningful social practices over time. As connections between these elements of social practice are disrupted during more active phases of the condition, affected individuals may be defected from old practices and recruited to new ones, often requiring both time and social support to find meaning or pleasure in these alternative ways of being in the world.

Might constraint be compatible with care? Home care as a situational ethics

Antoine Hennion and Pierre A. Vidal-Naquet

Respecting the autonomy and will of people has legitimately led to strictly control the use of constraint in care activities, and promote a care ethics centred around people’s needs and wills. But constraint is underlying in any action aiming at making people do something, even with their consent, especially when their ability to evaluate what is best for them may be altered. Ceaselessly present in care, this ordinary, silent constraint should not be only deemed as a necessary evil to be prevented. In contrast with this legally-based view, the paper adopts a pragmatic perspective. Leaning on minute case studies carried out at disable people’s homes, the empirical section takes up some key troubling moments between caregivers and patients as trials capable of revealing ‘constraint in practice’: a situation of uncertainty, doubt, hesitations on the appraisal of what is happening and how to deal with it, banning any clear-cut distinction between technical gestures and moral values. Having outlined the characters of such a ‘situational ethics’, the authors argue in conclusion that, provided caregivers are never quits with its use, constraint is compatible with care, and assume that care theories could fruitfully support this advocacy to ‘maintaining the trouble’ in care practices.

The concept of medicalisation reassessed

Joan Busfield

Medicalisation has been an important concept in sociological discussions of medicine since its adoption by medical sociologists in the early 1970s. Yet it has been criticised by some sociologists, in part because it seems too negative about medicine, and modified or replaced by others with concepts deemed more relevant like biomedicalisation and pharmaceuticalisation. My aim in this paper is to reassess the concept and consider whether it still has value in exploring significant aspects of the role of medicine in present-day society. I start with an archaeology of the concept’s development and the different ways it has been used. This covers some familiar ground but is essential to the main task: examining criticisms of the concept and assessing its value. I conclude that the concept continues to have a crucial and productive place in sociological analyses of medicine and that the process of medicalisation is still a key feature of late-modern social life and culture.

The concept of medicalisation reassessed: a response to Joan Busfield

Simon J. Williams, Catherine Coveney and Jonathan Gabe

The concept of medicalisation reassessed: a rejoinder

Joan Busfield

Transcultural Psychiatry

“In our community, a friend is a psychologist”: An ethnographic study of informal care in two Bhutanese refugee communities

Liana Chase and Ram P. Sapkota

The recent rise in suicide among Bhutanese refugees has been linked to the erosion of social networks and community supports in the ongoing resettlement process. This paper presents ethnographic findings on the role of informal care practiced by relatives, friends, and neighbors in the prevention and alleviation of mental distress in two Bhutanese refugee communities: the refugee camps of eastern Nepal and the resettled community of Burlington, Vermont, US. Data gathered through interviews (n = 40, camp community; n = 22, resettled community), focus groups (four, camp community), and participant observation (both sites) suggest that family members, friends, and neighbors were intimately involved in the recognition and management of individual distress, often responding proactively to perceived vulnerability rather than reactively to help-seeking. They engaged practices of care that attended to the root causes of distress, including pragmatic, social, and spiritual interventions, alongside those which targeted feelings in the “heart-mind” and behavior. In line with other studies, we found that the possibilities for care in this domain had been substantially constrained by resettlement. Initiatives that create opportunities for strengthening or extending social networks or provide direct support in meeting perceived needs may represent fruitful starting points for suicide prevention and mental health promotion in this population. We close by offering some reflections on how to better understand and account for informal care systems in the growing area of research concerned with identifying and addressing disparities in mental health resources across diverse contexts.

Anthropology and Aging (open access)

The Social Context of Collective Physical Training among Chinese Elderly: An Anthropological Case Study in a Park in Beijing

Yeori Park

This study analyzes the social context in China where the elderly participate in collective physical training, a cultural activity specific to the country. For this study, senior citizens aged 60 or above who participated in collective physical training in a park in Beijing were observed for five months. Research results found that collective physical training enables formation of social networks providing mutual caring and support. On the other hand, the participants conform to the self-disciplined modern discourse to survive in the post-Mao society. They do collective physical training due to their social conditions, such as the poorly established welfare system for the aged, severance pay that is too low to cover medical expenses. Although the participants seem to autonomously choose collective physical training based on their own preferences, the context of Chinese society, including hidden government intentions, leads the elderly to participate in training activities.

Social Contract on Elderly Caregiving in Contemporary Chile

Carola Salazar

This paper explores the definitions of social contract on elderly caregiving among a group of seven Chilean aging experts. The data show that for Chileans, family remains a strong institution that should provide care of its members, with daughters or daughters-in-law being the preferred person to provide care. Also, age segregation, along with the gradual privatization of services such as health care and the pension system, promotes individuality: this can become a problem for future generations because they are no longer concerned with helping others.

Anthropological Quarterly

SPECIAL COLLECTION: Producing Ebola: Creating Knowledge In and About an Epidemic

INTRODUCTION:

Producing Ebola: Creating Knowledge In and About an Epidemic

Catherine Bolten and Susan Shepler

ARTICLES:

Emerging Disease or Emerging Diagnosis? Lassa Fever and Ebola in Sierra Leone

Annie Wilkinson

It has become routine to attribute the tragedy of the West African Ebola epidemic to inexperience and lack of knowledge. Guinea, Liberia and Sierra Leone were portrayed as entirely unfamiliar with Ebola and therefore without relevant knowledge. The simplicity of this narrative is disturbed by the experience of Lassa fever, an infectious and deadly viral hemorrhagic fever (VHF), which is endemic in the three countries most affected by Ebola. This paper looks beyond Ebola in 2014 to the history of efforts to control VHFs in the Mano River and challenges the idea there was a vacuum of knowledge. Highlighted instead are politics of knowledge which have run through global health and which have prioritized particular forms of knowledge and ways of dealing with disease. Ethnographic research on the emergence of Lassa and the subsequent emergence of Ebola in West Africa is presented, focusing on the development of technologies and institutions to detect and manage both viruses. This provides a lens for exploring what was known and not known, how and by whom; and what was counted and what was not, and why. The anthropological literature on emerging diseases has so far focused on the social, economic, and cultural dynamics which produce disease burdens but less on the socio-technical processes which calibrate these burdens. The paper contributes to the anthropology of emerging infectious disease by more fully accounting for the intricacies, uncertainties and implications of diagnostic and surveillance practices for new diseases. The paper will add to post-Ebola debates around preparedness by connecting intricate sociotechnical perspectives on disease emergence with the politics of science and global health and questioning the way priorities, risks, and problems have been conceptualized within this.

Missing Bodies and Secret Funerals: The Production of “Safe and Dignified Burials” in the Liberian Ebola Crisis

Mary H. Moran

During the height of the Ebola crisis in West Africa, public health responders and the international media focused on dead bodies as sites of disease transmission when early contact tracing discovered the relationship between attendance at funerals and emerging clusters of new cases. Anthropologists were central to the emergence of new protocols for “safe and dignified” disposal of the dead, emphasizing alternative rituals and the flexibility of local practice. In the process, I suggest that the emotional impact of loss and bereavement was subordinated to the focus on ritual. The new knowledge produced about safe and dignified burials in West Africa reveals the absence of knowledge about the handling of dead bodies and the emotional impact of bereavement among journalists, anthropologists, and biomedical professionals alike.

Ebola Through a Glass, Darkly: Ways of Knowing the State and Each Other

Adam Goguen and Catherine Bolten

The Ebola epidemic unfolded in radically divergent manners in two neighboring villages in Sierra Leone, with one recording 40 cases and 20 deaths and the other recording zero cases, though they are located only 100 meters apart. Presented with identical information about Ebola’s cause and modes of transmission, one chief reacted by attempting to shield his village from outside knowledge and influence, encouraging his people to continue their normal practices of care and communion, and the other by instituting self-isolation, rapidly enforcing Ebola-specific practices among his residents. We argue that these opposing courses of action were the result of the chiefs interpreting health communications with respect to their social, historical, and political relationships with each other and with the state, and not as a result of one embracing medical knowledge and the other rejecting it. “Through a glass, darkly” refers to historical practices of knowledge interpretation in which knowledge is never treated as neutral information, but as implicated in relationships of power, rendering its political implications more important than the information conveyed. We distinguish between orthodoxy and orthopraxy—right belief versus right practice—to argue that the epidemic ended locally not through the circulation of knowledge, but through the circulation of Ebola-specific practice. We caution against treating knowledge only in terms of its production, circulation, and consumption, and urge a new focus on knowledge non-production, obfuscation, and rejection.

“We Know Who is Eating the Ebola Money!”: Corruption, the State, and the Ebola Response

Susan Shepler

Sierra Leonean production of knowledge about Ebola was, in large part, production of knowledge about “who ate the Ebola money.” This paper traces people’s responses to the Ebola crisis through a number of different moments, at each point reflecting on how their concerns about how Ebola money was being spent illuminate their expectations of their state. It argues that the Ebola crisis reveals people’s contradictory relationships to their own states, wherein they simultaneously mistrust their politicians and look to their politicians in a moment of crisis. The paper also investigates Sierra Leone’s relationship to the international community, concluding that the state’s weakness is produced, in part, by its place in the international system. The research is based on three field visits to Sierra Leone and Liberia in April 2014, July 2014, and January 2015 and draws on interviews and focus groups in urban and rural settings.

SOCIAL THOUGHT & COMMENTARY:

Epistemologies of Ebola: Reflections on the Experience of the Ebola Response Anthropology Platform

Fred Martineau, Annie Wilkinson, and Melissa Parker

By September 2014, it was clear that conventional approaches to containing the spread of Ebola in West Africa were failing. Public health teams were often met with fear, and efforts to treat patients and curtail population movement frequently backfired. Both governments and international agencies recognized that anthropological expertise was essential if locally acceptable, community-based interventions were to be designed and to successfully interrupt transmission. The Ebola Response Anthropology Platform was established against this background. Drawing together local and internationally based anthropologists, the Platform provided a coordinated and rapid response to the outbreak in real time. This article explores how the Platform developed and interacted with other epistemic communities to produce knowledge and policy over the course of the outbreak. Reflecting on the experiences of working with the UK Department for International Development, the World Health Organization and other agencies, we ask: what do these experiences reveal about the politics of (expert) knowledge and its influence on the design and implementation of policy? Did differing conceptions of the place of anthropology in humanitarian crises by policymakers and practitioners shape the contributions made by the Ebola Response Anthropology Platform? What are the implications of these experiences for future anthropological engagement with, and research on, humanitarian responses to health crises?

Ebola at a Distance: A Pathographic Account of Anthropology’s Relevance

Adia Benton

Drawing on a year of researching and writing about the West African Ebola epidemic from afar, I use the heuristic of virality to critically examine the collective US anthropology response to Ebola, a viral disease, and the anthropological knowledge networks formed to address the 2013 – 2015 outbreak. Specifically, I describe how digital media facilitated an entry point to build connections and knowledge around the epidemic in American anthropologists’ quest to prove the discipline’s relevance, the viral circulations of and replications of anthropological ideas in the Ebola response, and the attempts to shed pathogenic racial legacies of Africanist anthropology shaping US anthropology’s official response.

Body & Society

Staging Embryos: Pregnancy, Temporality and the History of the Carnegie Stages of Embryo Development (open access)

Sara DiCaglio

The founding of the Carnegie Institute’s Department of Embryology in 1913, alongside its systematization of embryo staging, contributed to the mechanization of developmental stages of embryo growth in the early 20th century. For a brief period in the middle of the century, attention to the detailed interrelation between embryo development and time made pre-existing ideas about pregnancy ends less determinative of ideas about that developmental course. However, the turn to the genetic scale led to the disappearance of this attention, replaced by a sense of biological life as seamlessly scripted. This study examines the history of what I refer to as temporal attention: attention to the live, unfolding potentialities within vital matter. The reintroduction of temporal attention to discussions of development allows us to more fully consider non-human vitality and the experiences of beings that house or otherwise intimately intersect with that vital tissue, regardless of outcomes.

Body Image and Prosthetic Aesthetics: Disability, Technology and Paralympic Culture (open access)

Tomoko Tamari

The success of the London 2012 Paralympic Games not only revealed new public possibilities for the disabled, but also thrust the debates on the relationship between elite Paralympians and advanced prosthetic technology into the spotlight. One of the Paralympic stars, Oscar Pistorius, in particular became celebrated as ‘the Paralympian cyborg’. Also prominent has been Aimee Mullins, a former Paralympian, who became a globally successful fashion model by seeking to establish a new bodily aesthetic utilizing non-organic body parts. This article examines how the modern discourse of prostheses has shifted from the made-up and camouflaged body to the empowered and exhibited body to create a new cultural sensitivity in terms of body image – prosthetic aesthetics. Prosthetic aesthetics oscillates between two polarized sensitivities: attractiveness/‘coolness’, which derive from the image of a perfect human-machine synthetic body, and from abjection/the uncanny, which is evoked by the actual materiality of the lived body incorporating a lifeless human-made body part.

On the Materialization of Hormone Treatment Risks: A Trans/Feminist Approach (open access)

Sari Irni

With a focus on hormone treatments, this article contributes to recent problematizations of the ontology of bodies, illnesses and medication. Hormone treatment is conventionally understood to comprise preparations like pills, patches or injections, and following from this understanding, the materiality of risk is perceived as potential adverse effects of pharmaceuticals within individual bodies. By discussing Finnish trans persons’ experiences of hormone treatments, and drawing from material feminisms and trans/feminist studies, this article rethinks what ‘hormone treatments’ and their risks materially entail. Stressing the importance of accounting for the relationality of risks, the article suggests that hormone treatment risks can be seen as Baradian ‘phenomena’ that materialize contextually within specific ‘treatment apparatuses’ and the power relations that saturate them. This process of materialization includes the gendering of risks and how the gender binary itself may at times constitute a risk.

Critical Public Health

Mother protection, child survival: narrative perspectives on child mental health services underutilization

Melody J. Slashinski

In the United States, increased national attention has generated a wealth of public health and epidemiologic research examining disparities in African American children’s mental health services utilization. Research has not yet been extended to examining the social structural mechanisms that keep these disparities stable and in place. Drawing from a larger urban ethnographic field study exploring the ‘everyday’ of health and illness within and across African American families living in an inner city public housing community, in this article I document the narratives of four African American mothers to illustrate how social structural mechanisms shape their decisions to seek or not mental health services for their children. I frame mothers’ decisions in terms of everyday violence, drawing attention to the institutionalized injustices that are normalized and rendered invisible because of their routine pervasiveness. I conclude with a discussion of integrating structural interventions to modify or reduce disparities in African American children’s mental health services utilization.

Visceral politics: obesity and children’s embodied experiences of food and hunger

S. Gunson, M. Warin, and V. Moore

Children have been made a priority in Australian government obesity interventions, with programmes tending to focus on promoting behaviour change in food and exercise practices. This paper reports findings from ethnographic research with a group of Australian children aged 10–14 years living in a low socio-economic suburban setting. We propose that central to these children’s experiences of food and eating is the negotiation and management of hunger. Historically, disadvantage has been embodied and inscribed on children’s bodies in very visible ways, and the coexistence of hunger and obesity is part of this continuum. Despite considerable evidence of food insecurity in our research site, issues of hunger were absent in an obesity intervention underway at the time. We examine how hunger was felt in children’s lives, how it was managed and the ways in which messages about eating less, while eating more ‘healthy foods’, were at odds with the children’s experiences of hunger. Moreover, we argue that hunger and obesity in this context were doubly stigmatised, as children were very aware of how their hunger and their bodies marked them as different and disadvantaged. Attention to both the embodied and social impacts of hunger on children and their everyday relationships is key in formulating more sensitive, contextualised public health interventions.

Culture, Medicine, and Psychiatry

SPECIAL ISSUE: Moral (and Other) Laboratories

Introduction to “Moral (and Other) Laboratories”

Teresa Kuan and Lone Grøn

“Moral (and other) laboratories” is a special issue that draws on Cheryl Mattingly’s notion of the “moral laboratory” to explore the uncanny interface between laboratory ethnography and moral anthropology, and to examine the relationship between experience and experiment. We ask whether laboratory work may provoke new insights about experimental practices in other social spaces such as homes, clinics, and neighborhoods, and conversely, whether the study of morality may provoke new insights about laboratory practices as they unfold in the day-to-day interactions between test tubes, animals, apparatuses, scientists, and technicians. The papers in this collection examine issues unique to authors’ individual projects, but as a whole, they share a common theme: moral experimentation—the work of finding different ways of relating—occurs in relation to the suffering of something or someone, or in response to some kind of moral predicament that tests cultural and historically shaped “human values.” The collection as a whole intends to push for the theoretical status of not merely experience itself, but also of possibility, in exploring uncertain border zones of various kinds—between the human and the animal, between codified ethical rules and ordinary ethics, and between “real” and metaphorical laboratories.

Humanity at the Edge: The Moral Laboratory of Feeding Precarious Lives

Mette N. Svendsen, Iben M. Gjødsbøl, Mie S. Dam, and Laura E. Navne

At the heart of anthropology and the social sciences lies a notion of human existence according to which humans and animals share the basic need for food, but only humans have the capacity for morality. Based on fieldwork in a pig laboratory, a neonatal intensive care unit (NICU), and a dementia nursing home, we follow practices of feeding precarious lives lacking most markers of human personhood, including the exercise of moral judgment. Despite the absence of such markers, laboratory researchers and caregivers in these three sites do not abstain from engaging in questions about the moral status of the piglets, infants, and people with dementia in their care. They continually negotiate how their charges belong to the human collectivity and thereby challenge the notion of ‘the human’ that is foundational to anthropology. Combining analytical approaches that do not operate with a fixed boundary between human and animal value and agency with approaches that focus on human experience and virtue ethics, we argue that ‘the human’ at stake in the moral laboratory of feeding precarious lives puts ‘the human’ in anthropology at disposal for moral experimentation.

The Moral Lives of Laboratory Monkeys: Television and the Ethics of Care

Lesley A. Sharp

Why do lab monkeys watch TV? This essay examines the preponderance of televisions in primate housing units based in academic research laboratories. Within such labs, television and related visual media are glossed as part-and-parcel of welfare or species-specific enrichment practices intended for research monkeys, a logic that is simultaneously historically- and ontologically-based. In many research centers, television figures prominently in the two inseparable domains of a lab monkey’s life: as a research tool employed during experiments, and in housing units where captive monkeys are said to enjoy watching TV during “down time.” My purpose is not to determine whether monkeys do indeed enjoy, or need, television; rather, I employ visual media as a means to uncover, and decipher, the moral logic of an ethics of care directed specifically at highly sentient creatures who serve as human proxies in a range of experimental contexts. I suggest that this specialized ethics of animal care materializes Mattingly’s notion of “moral laboratories” (Mattingly in Moral laboratories: family peril and the struggle for a good life, University of California Press, Berkeley, 2014), where television mediates the troublesome boundary of species difference among the simian and human subjects who cohabit laboratory worlds.

At the Edge of Safety: Moral Experimentation in the Case of Family Therapy

Teresa Kuan

“At the Edge of Safety” argues for thinking of structural family therapy as a “moral laboratory.” Borrowing a trope from Cheryl Mattingly’s recent book Moral Laboratories, the article reconsiders a therapeutic style that was once controversial by analyzing personal stories of supervision—i.e. professional training—in light of Mattingly’s suggestion that a social space in which people conduct experiments on themselves and their lives may be considered a moral laboratory. Family therapy is especially good to think with, because it is simultaneously a real and a metaphorical laboratory, physically lab-like in its use of visual technologies, yet moral in the way it puts the possibility for situational change in the hands of human actors. The technological apparatus stages evidence for sub-visible, interpersonal dynamics, while the provocative quality of not only therapeutic actions, but also of supervision, points to an ethos of experimentation. Stories of supervision reveal how personal of an experience being supervised can be. Trainees are pushed to become something otherwise, in learning to “expand” their styles. Sometimes the push is just right. Sometimes it goes too far. Whatever the case may be, the stories analyzed speak to anthropological questions concerning the uncertainty of human action and the many ways people can unknowingly injure one another with small hurts.

The Tipping of the Big Stone—And Life itself. Obesity, Moral Work and Responsive Selves Over Time

Lone Grøn

Why is “everything I know is the right thing to do a million miles removed from what I do in reality?” This question posed by Rita, my main interlocutor and friend in a fieldwork that started in 2001–2003 and was taken up again in 2014–2015, opens up an exploration of moral work and moral selves in the context of the obesity epidemic and weight loss processes. I address these questions through the notion of “moral laboratories” taking up Mattingly’s argument that moral cultivation over time cannot be disconnected from a notion of self. Mattingly has consistently argued for a biographical and narrative self, which is processual and created in community. Along these lines, and by recourse to the German philosopher Bernhard Waldenfels’ phenomenology, I will propose the notion of a responsive self. The responsive self highlights the eventness of ongoing experimentation against the odds and captures equally pathic and agentive dimensions of a self that both persists and is transformed over time.

Engaging with Dementia: Moral Experiments in Art and Friendship

Janelle S. Taylor

The box-office as well as critical success of the 2014 major motion picture Still Alice, starring Julianne Moore in the title role and based on the bestselling novel of the same name by the Harvard-trained neuroscientist Lisa Genova (Still Alice. Simon & Schuster, New York, 2009), marked an important moment in public cultural representations of people with dementia. Still Alice tells the story of Alice Howland, an eminent scientist whose increasing memory lapses are eventually diagnosed as early-onset Alzheimer’s, and chronicles the transformations in her family relationships as her husband and three children respond to her decline in different ways. Alice’s husband, her son, and her older daughter all respond by turning toward science, while her younger daughter Lydia seeks to engage her mother as she is now, and turns toward art and relationships. Taking Still Alice and the figure of Lydia as an entry point, I discuss arts-focused efforts to improve the lives of people with dementia, and draw upon ongoing interview-based research on the topic of dementia and friendship, to offer an account of some of the ways that people I have spoken with are actively experimenting with art and with relationships in the face of dementia. I argue that these efforts can be understood as “moral experiements,” in the sense articulated by Cheryl Mattingly (Moral Laboratories: Family Peril and the Struggle for a Good Life. University of California Press, Berkeley, 2014). Although Lydia is a fictional character, her response to Alice’s dementia points toward the kinds of moral experimentation that are in fact possible, and quietly being practiced, by ordinary people every day.

Comments on Moral (and Other) Laboratories

Michael Lambek

Moral (and Other) Laboratories and the Semantic Impertinence of Metaphor: An Afterward

Cheryl Mattingly

East Asian Science, Technology and Society

The Politics of Preservation and Loss: Tibetan Medical Knowledge in Exile

Stephan Kloos

This article analyzes the history and development of Tibetan medicine in exile from the perspective of the pervasive Tibetan exile narrative of preservation and loss. Through combined ethnographic and historical data, it shows how the preservation of traditional Tibetan medical knowledge in exile entails a process of a fundamental reinvention of its nature, not only rendering it modern but also (re)investing it with considerable hegemonic power. As Tibetan medicine in exile has come to stand for the nation as envisioned by the Tibetan government-in-exile, its preservation is imbued with a significance that far exceeds the medical realm. Indeed, despite a well-established discourse of preservation and loss that implies a precarious state of weakness, Tibetan medical knowledge functions (along with Tibetan Buddhism) as an important means to preserve a weakened but still existing and real Tibetan cultural hegemony in exile. Thus, while common rhetoric assumes a triumph of modern science and a gradual loss of traditional knowledge, the case of Tibetan medicine shows that we need to take the latter seriously as an important apparatus of power even today.

The Case of the Suzhou Hospital of National Medicine (1939–41): War, Medicine, and Eastern Civilization (open access)

Keiko Daidoji and Eric I. Karchmer

This article explores the founding of the Suzhou Hospital of National Medicine in 1939 during the Japanese occupation of Suzhou. We argue that the hospital was the culmination of a period of rich intellectual exchange between traditional Chinese and Japanese physicians in the early twentieth century and provides important insights into the modern development of medicine in both countries. The founding of this hospital was followed closely by leading Japanese Kampo physicians. As the Japanese empire expanded into East Asia, they hoped that they could revitalize their profession at home by disseminating their unique interpretations of the famous Treatise on Cold Damage 傷寒論 abroad. The Chinese doctors that founded the Suzhou Hospital of National Medicine were close readers of Japanese scholarship on the Treatise and were inspired to experiment with a Japanese approach to diagnosis, based on new interpretations of the concept of “presentation” (shō / zheng 證). Unfortunately, the Sino-Japanese War cut short this fascinating dialogue on reforming medicine and set the traditional medicine professions in both countries on new nationalist trajectories.

Song Ci (1186–1249), “Father of World Legal Medicine”: History, Science, and Forensic Culture in Contemporary China

Daniel Asen

Song Ci (1186–1249) was an official of the Southern Song Dynasty best known for authoring the Collected Writings on the Washing Away of Wrongs (Xiyuan jilu), a work often hailed as the world’s first systematic treatise on forensic medicine. While biographical details about his life were known in local history writings during the late imperial period, Song had garnered relatively little attention among those who handled forensic examinations, despite the fact that his work had impacted Chinese forensic practices for centuries. In modern times, by contrast, Song has been praised by historians and forensic professionals and viewed as a founding figure of the modern forensic sciences in China and, in the boldest claims, across the globe. Song has also become the subject of historical novels, television shows, and other popular media. This article examines the ways in which the historical image and meanings of Song Ci have been negotiated in China over the Republican period (1912–49) and after the founding of the People’s Republic of China in 1949. It argues that a confluence of modern developments—new concepts of national and world history, the successful implementation of legal medicine in China, and the global popularity of forensicsthemed popular culture—has given new meaning and importance to this thirteenth-century figure under the new conditions of the twentieth and early twenty-first centuries.

FORUM: Provincializing STS

Body-Head Separation, or a Multihanded/Multiheaded Guanyin: Note on the Birth of the “Provincializing STS” Forum

Wu Chia-Ling

Provincializing STS: Postcoloniality, Symmetry, and Method

John Law and Lin Wen-yuan

Postcolonial Specters of STS

Warwick Anderson

STS, TCM, and Other Shi 勢 (Situated Dispositions of Power/Knowledge)

Judith Farquhar

Encounters, Trajectories, and the Ethnographic Moment: Why “Asia as Method” Still Matters

Atsuro Morita

This Way Does Not Come to the Point: Comments on “Provincializing STS: Postcoloniality, Symmetry, and Method”

Ruey-Lin Chen

The Stickiness of Knowing: Translation, Postcoloniality, and STS

John Law and Wen-yuan Lin

Ethos

SPECIAL ISSUE: Social Contagion and Cultural Epidemics

Social Contagion and Cultural Epidemics: Phenomenological and “Experience‐Near” Explorations

Lone Grøn and Lotte Meinert

We open the special issue by asking: how are groups of people affected by similar conditions, even when these are not biologically contagious? This is linked to broader theoretical and empirical questions of how we are influenced by others and by the specific times and places in which we live. We describe the history and etymology of the concepts of epidemics and contagion and argue that we need to reclaim some of the pre-Hippocratic meanings of these concepts. Importantly, we suggest a postponement, or epoche, of the negative moral judgment of these terms with a view to exploring what actually happens when noncommunicable diseases and conditions spread. We introduce a variety of existing approaches and argue that they have taken us only part of the way in trying to understand social contagion and cultural epidemics. The articles in this issue explore a variety of noncommunicable conditions that have gained global prominence as epidemic problems—diabetes, obesity, trauma, and autism—through perspectives and concepts from phenomenological and experience-near traditions. This includes emic ideas of social contagion and contamination, intersubjective units of analysis, causal indeterminacy, as well as diversity and transformation in social contagion.

The Weight of the Family: Communicability as Alien Affection in Danish Family Histories and Experiences of Obesity

Lone Grøn

Can we think of something like communicability or contagion in relation to diseases and conditions that have hitherto been categorized as noncommunicable? In this article, I take my ethnographic point of departure in the lifelong—and transgenerational—experiences of obesity, weight gain, and weight loss of four Danish families in order to show how kinship, relatedness, and dwellings emerge as simultaneously homey and alien contagious connections, when exploring communicability in the context of what is often referred to as “the obesity epidemic.” Analytically, I am inspired by the German philosopher Bernhard Waldenfels’ (2007, 2011a) phenomenology of the alien, and through an analysis of the tracing of the spread of obesity to kinship ties, Danish hygge and the places and times in which we live, I propose the notion of affection as a phenomenologically grounded theory of social contagion.

Despairing Moods: Worldly Attunements and Permeable Personhood in Yap

C. Jason Throop

Building upon ongoing efforts to further a phenomenological anthropological engagement with affective and mooded dimensions of moral experience, the article examines the ways in which everyday moods may disclose forms of attunement to worldly conditions. The article focuses specifically upon the mood-inflected concerns of a Yapese woman suffering from type II diabetes named “Thiil” who despairs of the possibility that her children will eventually become afflicted with the disease as well. A central goal of the article is to explore the ways in which Thiil’s mood-inflected responses to her illness disclose an attunement to the “communicable” pathways of an otherwise “noncommunicable” disease.

Dreamscapes of Intimacy and Isolation: Shadows of Contagion and Immunity

Douglas Hollan

In this article, I use the study of selfscape dreams to discuss contagion-like processes not as unique or extraordinary phenomena per se, but rather as a particular kind of social influence more broadly conceived. In particular, I argue that dream consciousness gives us clues about how social influence (and contagion) actually works: partially, incrementally, in a “condensed” way, through a variety of sensory and perceptual modalities, contingent on and delimited by the emotional memories of those involved, but with the potential of exceeding those contingencies and limitations by the ability of all of the participants to imaginatively elaborate upon what is experienced and communicated. I compare and contrast how and why two men from two very different parts of the world dream of their deceased parents. I use the dreams to illustrate how people come to inhabit, experience, and become influenced by their social and cultural worlds in the particular way they do and also to demonstrate how dream experience may be implicated in everyday behavior.

A Phenomenological Approach to the Cultivation of Expertise: Emergent Understandings of Autism

Mary C. Lawlor and Olga Solomon

In this article, we draw on narrative phenomenological (Mattingly 2010) and ethnographic projects to investigate how phenomenology may contribute to understanding how practical, experientially gained, expertise is cultivated in extraordinary circumstances. The lived world of autism provides a compelling context for such an exploration. Drawing on ethnographic data, we present arguments related to how a phenomenological approach to understanding autism can be productive by examining the cultivation of expertise and the contagion of knowledge and understanding. Family expertise that is grounded in lived experience often reveals the limitations of both public knowledge and scientific evidence and is generative of a kind of practical knowledge that warrants diffusion. Consideration is given to the specific contributions of a phenomenological approach to understanding autism and learning in collective engagements. Contagion as both a facilitative and positive phenomenon and a potentially stressful or harmful development is discussed.

Autism and The Ethics of Care: A Phenomenological Investigation Into the Contagion of Nothing

Cheryl Mattingly

This article investigates the social contagion of autism from a phenomenological perspective. It asks: Can a phenomenological approach, rather than merely illustrating the typologies revealed by constructionist and political economic approaches, generate new categories because it insists on a different unit of analysis rooted in a first-person perspective? To answer this, the article contrasts a third-person account of autism as an epidemic of representation and a phenomenological account. Drawing upon philosophical phenomenology (Gadamer in particular), it broadly outlines what is at stake in the phenomenological insistence on the primacy of the first-person perspective. Turning to an ethnographic case, it examines how the category of autism spectrum disorder (ASD), as it is lived by one family, poses a threat far more pernicious than a third-person exploration of ASD might suggest. As a lived experience, it becomes linked to other epidemics and life conditions, emerging as the ominous category “becoming nothing.”

“These Things Continue”: Violence as Contamination in Everyday Life After War in Northern Uganda

Lotte Meinert and Susan Reynolds Whyte

After decades of violent war, families are rebuilding their lives in the Acholi subregion of Northern Uganda. The return to normal order is marked by problems people see as consequences of the years of insecurity: mental illness, alcoholism, domestic violence, marital instability, and land conflicts that sometimes turn vicious. The ravages of war and years of constraint have left a legacy of troubles that is contagious and contaminating. The war is over, but people say that “these things continue.” In this article, we follow the case of one family and explore the social contagion and contamination of “these things.” We relate Acholi ideas of cen, the spirits of the vengeful dead, to Post-Traumatic Stress Disorder (PTSD) and phenomenological conceptions of violence and “the alien” in human experience.

Journal of the Royal Anthropological Institute

A flavour of Alzheimer’s

Laurence Anne Tessier

This article describes how today in the United States neurologists diagnose forms of dementia, such as Alzheimer’s disease and frontotemporal dementia. Taking as a starting-point the pervasive context of uncertainty in the diagnosis of neurodegenerative diseases, it examines how uncertainty is not merely an epistemological obstacle to the making of knowledge. On the contrary, the article analyses how uncertainty positively incites the use of clinicians’ ‘feelings’ in diagnostic work. Drawing on observations of clinical consultations and team meetings, it studies how, alongside contemporary instruments of objectification, clinicians use, share, and discuss their ‘feelings’ to ultimately renew knowledge about brain diseases. In documenting the manner in which medical expertise is bound to a concrete experience of the world, this article further explores how experts’ ‘intuition’ can be grasped as a conscious and effortful process, rather than as something ineffable, resisting analysis, and confined to an unconscious background.

Caring claims and the relational self across time: grandmothers overcoming reproductive crises in rural China

Charlotte Bruckermann

Revisiting the notion of relational personhood from a Chinese perspective, this article explores the premises of exchange underlying discourses of care, reproduction, and kinship in anthropology. Grandmothers contribute much of the care needed for reproduction of the next generation of children in the Chinese countryside. Their motivation to contribute care to secure offspring stems from the frustration of their past familial desires, and their hopes for transcendence through reproduction in the future. Grandmothers secure claims to offspring through their care between the interstices of the state bureaucracy and patrilineal norms. This care is not simply nurturing but can also become coercive and competitive. As Chinese grandmothers overcome past reproductive hardships by claiming future offspring through care, their selfhood not only becomes distributed through exchange with others, but also is dispersed across time in relation to past experiences and future aspirations of the self.

Medical Anthropology Quarterly

The Irrelevance Narrative: Queer (In)Visibility in Medical Education and Practice

William J. Robertson

How might heteronormativity be reproduced and become internalized through biomedical practices? Based on in-depth, person-centered interviews, this article explores the ways heteronormativity works into medical education through the hidden curriculum. As experienced by my informants, case studies often reinforce unconscious heteronormative orientations and heterosexist/homophobic stereotypes about queer patients among straight and queer medical students alike. I introduce the concept of the irrelevance narrative to make sense of how queer medical students take up a heteronormative medical gaze. Despite recognizing that being queer affects how they interact with patients, my informants describe being queer as irrelevant to their delivery of care. I conclude with a discussion of how these preliminary findings can inform research on knowledge production in biomedical education and practice with an eye toward the tensions between personal and professional identity among biomedical practitioners.

Afghan Refugee Explanatory Models of Depression: Exploring Core Cultural Beliefs and Gender Variations

Qais Alemi, Susan C. Weller, Susanne Montgomery, and Sigrid James

Relatively little empirical attention has been paid to understanding how refugees conceptualize depression and how this concept varies between genders. The purpose of this study was to explore beliefs about depression among Afghans residing in San Diego County, California, using cultural consensus analysis. Using the prescribed mixed-method approach, we employed results from in-depth interviews to develop a culturally meaningful questionnaire about depression. Consensus analysis of responses to questionnaire items from 93 Afghans (50 men, 43 women) indicates shared beliefs that associates depression causality with mild traumatic experiences and post-resettlement stressors, symptomatology to include culturally salient idioms of distress, and treatment selections ranging from lay techniques to professional care. Divergence between genders occurred most in the symptoms subdomain, with women associating depression with more somatic items. This study contributes to understanding the etiology of and cultural responses to depression among this population, which is critical to improving culturally sensitive intervention for Afghan refugees.

Neurasthenia, Generalized Anxiety Disorder, and the Medicalization of Worry in a Vietnamese Psychiatric Hospital

Allen L. Tran

This article examines two forms of the medicalization of worry in an outpatient psychiatric clinic in Ho Chi Minh City, Vietnam. Biomedical psychiatrists understand patients’ symptoms as manifestations of the excessive worry associated with generalized anxiety disorder (GAD). Drawing on an ethnopsychology of emotion that reflects increasingly popular models of neoliberal selfhood, these psychiatrists encourage patients to frame psychic distress in terms of private feelings to address the conditions in their lives that lead to chronic anxiety. However, most patients attribute their symptoms to neurasthenia instead of GAD. Differences between doctors’ and patients’ explanatory models are not just rooted in their understandings of illness but also in their respective conceptualizations of worry in terms of emotion and sentiment. Patients with neurasthenia reject doctors’ attempts to psychologize distress and maintain a model of worry that supports a sense of moral selfhood based on notions of obligation and sacrifice.

Resisting “Reason”: A Comparative Anthropological Study of Social Differences and Resistance toward Health Promotion and Illness Prevention in Denmark

Camilla Hoffmann Merrild, Rikke Sand Andersen, Mette Bech Risør, and Peter Vedsted

Social differences in health and illness are well documented in Denmark. However, little is known about how health practices are manifested in the everyday lives of different social classes. We propose acts of resistance and formation of health subjectivities as helpful concepts to develop our understanding of how dominant health discourses are appropriated by different social classes and transformed into different practices promoting health and preventing illness. Based on fieldwork in two different social classes, we discuss how these practices both overtly and subtly challenge the normative power of the health promotion discourse. These diverse and ambiguous forms of everyday resistance illustrate how and when situated concerns move social actors to subjectively appropriate health promotion messages. Overall, the different forms of resistance elucidate how the standardized awareness and education campaigns may perpetuate the very inequalities they try to diminish.

Routines, Hope, and Antiretroviral Treatment among Men and Women in Uganda

Margaret S. Winchester, Janet W. McGrath, David Kaawa‐Mafigiri, Florence Namutiibwa, George Ssendegye, Amina Nalwoga, Emily Kyarikunda, Judith Birungi, Sheila Kisakye, Nicholas Ayebazibwe, Eddy J. Walakira, and Charles Rwabukwali

Antiretroviral treatment programs, despite biomedical emphases, require social understanding and transformations to be successful. In this article, we draw from a qualitative study of HIV treatment seeking to examine the drug-taking routines and health-related subjectivities of men and women on antiretroviral treatment (ART) at two sites in Uganda. We show that while not all participants in ART programs understand clinical protocols in biomedical terms, they adopt treatment-taking strategies to integrate medication into daily practices and social spaces. In turn, these embedded practices and understandings shape long-term hopes and fears for living with HIV, including the possibility of a cure. More significant than new forms of citizenship or sociality, we suggest that quotidian dimensions of treatment normalization shape the long-term experience of medication and outlook for the future.

Publically Misfitting: Extreme Weight and the Everyday Production and Reinforcement of Felt Stigma (open access)

Alexandra Brewis, Sarah Trainer, SeungYong Han, and Amber Wutich

Living with extreme weight in the United States is associated with discrimination and self-stigma, creating structural exclusions, embodied stress, and undermining health and wellbeing. Here we combine ethnographic interviews and surveys from those with experiences of living with extreme weight to better explain how this vulnerability is created and reinforced by public cues, both physical (e.g., seatbelts) and social (the reactions of strangers). “Misfitting” is a major theme in interviews, as is the need to plan and scan constantly while navigating too-small public spaces. The most distressing events combine physical misfitting with unsympathetic reactions from strangers. Sensitivity to stigmatizing public cues reduces with weight loss, but does not disappear. This study explains one basic mechanism that underlies the creation of felt stigma related to weight even after weight loss: the lack of accommodation for size and the lack of empathy from others that characterize modern urban spaces.

Embodying Transition in Later Life: “Having a Fall” as an Uncertain Status Passage for Elderly Women in Southeast London

Miriam Boyles

In their 2014 report, the charity AgeUK states that one-third of older people (over 3 million) fall each year. This article takes a focused look at falling by describing four women’s accounts of “having a fall” in Walworth, southeast London, which sheds light on the experience of personal and corporeal change in later life. While some experiential studies of falling have made reference to a loss of embodied control and changes in identity, these aspects have not been explored in sufficient depth. Attending closely to the embodied experience of falling for older women in the context of everyday activity reveals the uncertainty surrounding what it actually signifies and the powerful effect this uncertainty has on their everyday lives and sense of self. This in-depth phenomenological account speaks to important gaps in the literature on falls, given the current research emphasis on the management of falls risk.

Is speculation fundamental to life itself? That’s the question that Steve Shaviro seeks to answer in his recent Discognition. Shaviro argues that sentience itself – which we might see operating in computer programs, plants, slime mold, and emergent technologies – is founded on the existence of the ability to speculate, to anticipate and plan. We may not be able to infer how speculation works for a sentient computer program or a slime mold, yet, they depend upon an ability to forecast, to imagine what may come next, so as to act appropriately in advance. In this sense, science fiction and speculative fiction help us exercise our speculative capacities, they allow us to think through a set of possibilities and a set of potential solutions. In doing so, they make life’s continuance possible, for individuals, communities, and the species – or, at least, they lay the foundation for enacting a variety of solutions in the face of looming disaster. Whether or not speculative futures are taken seriously – and whether or not a set of responses to their reality seem possible – is potentially an outcome of their presentation in media, and the popularity of those representations.

Across the pieces collected in this series on speculative health, contributors point to the need for scholars to engage critically and appreciatively with a variety of media and popular genres of fiction. From the recent popularity of ‘weird fiction’ to the ongoing presence of the Star Trek franchise, from the post-WWII generation of science fiction writers – like Octavia Butler and Ursula Le Guin – to more contemporary writers engaged with the implications of social media and internet connectivity, contributors point to a long-standing interest in representations of the human body, health and disease, and concerns about communicability and contagion in speculative literature. Engaging with these media may lead scholars to think critically about how their own media consumption shapes their views about viable research projects, empirical observation, and the futures we participate in making. Engaging with genres like speculative and science fiction may also inspire experiments in the presentation of social scientific research data, encouraging writers and readers to conceptualize new modes of ethnographic mediatization in an effort to engage the speculative capacities of readers.

In this respect, it’s worth thinking through Charles Briggs’ concept of biocommunicability, the process through which media comes to infect individuals and communities with ideas and categories. Speculative fictions have the potential to be contagious, to create ways of seeing the world that infect a broad swath of media consumers, both directly through the consumption of a given media, but also more broadly, as those readers shape their practices based on speculative futures. Science fiction scholars enjoy pointing to these very quirks of history, like Robert Heinlein’s speculative ‘waldo’ technology, which would come to be realized in ubiquitous smart phones and tablets, Aldous Huxley’s ‘soma’ seems to have been realized in widespread antidepressant pharmaceuticals, and Hugo Gernsback’s televised communication has become realized in video chat technologies (to name just three). Ideas spread through fiction, literature and lies, and inspire people to act in ways that might realize those ideas or forestall them. That speculative and science fiction have become wildly popular genres in recent decades might lead us to consider just how infectious these ideas are as well as the paths that they help carve through the world.

I’ve long been taken with Thomas Disch’s The Stuff Our Dreams are Made of, his survey of the history of science fiction and its popularity. Like so many science fiction scholars, Disch has an argument to make about what was the first science fiction story – his unconventional choice is Edgar Allan Poe’s ‘The Balloon-Hoax.’ It wasn’t called ‘The Balloon-Hoax’ at the time: Poe published a short piece in New York’s The Sun in 1844, claiming that a man had traversed the Atlantic Ocean in three days under the power of a gas balloon. Readers were apparently so taken with the idea that they believed it could be real and swarmed the offices of The Sun in an effort to get copies of the historic newspaper. But it was all a lie, and the newspaper was forced to issue a retraction, explaining that the story had been a work of fiction. It’s this line between reality and fiction that speculation so often treads – at its most deceptive, it convinces us of its truth, it makes us want to believe in its veracity, and appeals to our speculative reason to make sense of a lie, lies which are sometimes massive deceptions.

Because of this increasing popularity – and even mainstreaming – of speculative and science fiction, it’s also worth thinking about the relationship these genres have to capitalism and financialization, processes which rely on their own forms of speculation – to create profit and avoid crisis. Or maybe, to create crises and therein produce profit. In making emergent technologies desirable, if not entirely plausible, speculation compels investments, social and capital. Now a lesson in speculation gone awry, Theranos convinced investors that its emergent technologies could perform futuristic-seeming feats: with small amounts of blood, a wide variety of medical testing could be efficiently conducted. What seemed too good to be true turned out to be just that. But what is important here is how a speculative promise inspired investment – and a host of lies, fraudulent reporting, and shady practices, all to maintain the speculation. As playful and fun as speculation can be, it can also be corrupting and horrific – especially when it comes to the species-threat that the Anthropocene is increasingly taken to be.

Thinking through speculation and health asks us to think through scale – from individuals, to communities, to species, to planet – maybe even to the cosmos. In considering our individual and collective futures and their potential outcomes, speculation encourages scalar imaginations that might inspire action. The challenge in the present is thinking through the ethical implications of these actions and their possible future repercussions. Many futures are possible, but how do we adjudicate which are the right futures to bring into being? If we forego utilitarian attempts at creating the best health for the most humans and non-humans, what are we left with? Can we even hold onto a concept like ‘health’ in the long term? Let’s see.

Matthew Wolf-Meyer is Associate Professor of Anthropology at Binghamton University. His work focuses on medicine, science and media in the United States to make sense of major modern-era shifts in the expert practices of science and medicine and popular representations of health. His book The Slumbering Masses: Sleep, Medicine and Modern American Life was the first book-length social scientific study of sleep in the United States. It offers insights into the complex lived realities of disorderly sleepers, the long history of sleep science, and the global impacts of the exportation of American sleep. He is currently finishing a book manuscript on the alternative histories of American neuroscience, seen through the lens of neurological disorders, tentatively titled Unraveling. He is in the beginning stages of a project entitled The Colony Within on the history and contemporary medicalization of digestion and excretion in the U.S.

The notion of materiality as I have just used it is of value in reflecting on the impossibility of the inert. Consider water – presumably a substance more inert even than the classic sugar pill of placebo research – from the standpoint of a Navajo indigenous healer, a Road Man of the Native American Church who was also a college instructor of Navajo culture: “Water is the most powerful medicine.” He elaborated that when a person is ill the most basic thing they need is water, and it is what one thinks of first to give an afflicted person. All of life is based on water, which it needs to survive and thrive. The insistence on water being a powerful medicine is all the more compelling given that it is expressed by a Road Man who administers peyote, the sacred cactus whose mescaline and related alkaloids render the idea of inertness massively irrelevant. So in what sense can we understand water as a medicine and not inert? First, this is a matter of adequate hydration. Second, however, the act of giving in itself is not inert insofar as it conveys a sense of care along with the material substance being given. Here the process of recognizing the power of water as medicine is identical with investing water with the power of care. It is consecrated in the sense used by anthropologist R.R. Marrett, who defined sacrament as investing a natural function with supernatural authority.² Ritual in general and sacraments in particular are purposive and not passive, not a matter of routine and repetition, but of vigilance and a summons to exertion. They are not inert.

The uses of rhinoceros horn offers an example that taps a more complex series of relations between care/commercialization, specific/non-specific, and active/inert. Currently, of the thirty once-living rhinoceros species, all five that remain are near extinction because of poaching. Over the centuries rhinoceros horn has been used in Traditional Chinese Medicine to treat a broad range of conditions including fever, rheumatism, gout, snakebites, hallucinations, nightmares, typhoid, and headaches.^3-8 Though studies indicate the horn is not entirely inert, in the last decade an explosion of horn use has taken place in Vietnam, where new uses have been introduced including as a palliative treatment, and possibly a cure for cancer. This popular usage corresponds to rapid increase in the proportion of wealthy people who can access the substance, combined with the quickly rising cancer rate in a country with still-inadequate health care. Rhinoceros horn has also become commonly used to support an extravagant lifestyle, reputedly allowing people to drink more and curing hangovers due to its traditional attribution of enhancing liver function. Indeed, rhino horn powder mixed with rice wine is described as the drink of millionaires. The false notion that rhinoceros horn is used as an aphrodisiac in Asia appears to be the fabrication of mid-20^th century Western writers, but ironically under the influence of such writers there now does appear to be a trend for such usage in Vietnam,^4,5,7 one that is “more effective than Viagra in allow men to have sex for two to four hours.”⁹ A generous conclusion would be that the traditional medical system is evolving, and a critical one would be that traditional medicine is being distorted and exploited. One is hard pressed not to conclude that this phenomenon bears some similarity to off-label prescribing in our own society. How could a placebo effect for one condition not be enhanced by the proven effectiveness of the same substance for another condition? Finally, there is the ironic trend in which the Vietnamese market has been infused with fake rhinoceros horn – the placebo form of the placebo.

Discussion of the placebo is intertwined with how ritual healing works, fundamental to which is the “psychotherapy analogy”: the idea that ritual healing works in an indigenous setting as psychotherapy works in a Euro-American setting, and can be understood as that culture’s equivalent of psychotherapy.^10-11 One practice of ritual healing to which the psychotherapy analogy applies is exorcism in the Roman Catholic Church, a liturgical rite intended to relieve affliction due to possession by evil spirits, performed by a priest under permission from a bishop. In the past decade Catholic exorcism has acquired a more prominent profile in the public sphere than at any time since the beginning of the Enlightenment. The Church accepts psychiatry insofar as, officially, mental illness must be professionally ruled out prior to recognizing a problem as due to demonic affliction.

This relation between psychiatry and religion is relevant to an understanding of placebo. The 2006 theology dissertation of an American priest who serves as his diocesan exorcist addresses the relation between the exorcist and psychiatrist by categorizing mental health professionals into three categories: those who completely reject the use of exorcism in any circumstance and dismiss it as medieval “hocus pocus;” a “placebo” group who regard exorcism as potentially to be a simple solution or a “quick fix;” and a category, “well-regarded by exorcists, [is] that of medical practitioners, including psychologists and psychiatrists, who are willing to work alongside exorcists and theologians in caring for the possessed and other people otherwise affected by demonical forces.”¹² The palpable distress experienced by those who seek the help of exorcists is not only assessed in terms of the presence or absence of demonic activity but also in terms of the presence or absence of mental illness.

Psychiatrists and psychologists who are both practicing Catholics and convinced in the ontological reality of evil spirits consult and assist exorcists. One such Catholic psychiatrist, who holds a medical school faculty position in psychiatry as well as a clinical position in the affiliated mental hospital, responded to an article in a Catholic magazine written by the dean of his medical school. The dean, himself a Catholic, argued that what in biblical times was defined as demonic possession corresponds to what today is understood to be mental illness. My interlocutor agreed with everything except the obsolescence of evil spirits, and argued that evil spirits are, in his phrase “ontological entities.” When I asked if his position was not a challenge to rationality, he invoked Aquinas on the synthesis of faith and reason.

This leads to a series of peculiar questions. If possession is understood to be mental illness in actuality, would that mean exorcism must by definition be understood as placebo? Would that conclusion be reversed if exorcism was redefined as a form of psychotherapy? If demons were ontological entities, would that allow exorcism to be defined as active rather than inert? If a mentally ill person was possessed and then healed by exorcism, would its effect on the possession be understood as active while its effect on the psychiatric disorder be understood as placebo? Are we justified in describing the demonic spirit as a nocebo – an inert, immaterial entity capable of causing harm to humans? Are we justified in describing the rite of exorcism as a placebo – an inert, symbolic performance? It is out of the question to say that the afflicted are not really suffering and therefore exorcism as an inert treatment is only alleviating a non-effect. Exorcists and their assisting mental health professionals seriously endeavor to distinguish cases of psychiatric disorder and demonic possession, and moreover to consider whether an individual can be said to be both mentally ill and possessed. One exorcist has written that the criterion of demonization is that there is a kind of “surplus” in the sense that the affliction “goes beyond” what is typical of psychiatric disorder.¹³ This suggests that there may be a phenomenological surplus distinctive to the Roman Catholic cultural milieu which is expressed, enacted, and experienced in specifically Catholic terms. In other words, following the premise that each culture engenders the problems for which it then creates solutions, the possession/exorcism complex may be such a phenomenon.

Finally, contrary to what one might expect, exorcism is not understood as a one-shot magic bullet, or a miracle technique. It is typically an ongoing process requiring multiple sessions, and it is said that a complete liberation from demonic influence can require 5-7 years if a person if truly possessed. It is not so much that this “incremental efficacy”¹⁰ makes exorcism analogous to extended psychotherapy as that the impossibility of the inert does not require healing to be dramatic and miraculous. What guarantees the impossibility of the inert is not only meaning but care. Meaning and care are invested in the medicine or treatment. From the side of the patient, care makes an impression, and I choose this word precisely because it bears both a material and mental sense. The degree of this impression is in turn contingent on the nature and extent of the afflicted person’s engagement in the process of becoming well, an element that can never be completely controlled for in a clinical trial. Care, investment, impression, and engagement are the human phenomena that need to be isolated and elaborated, because they are the active ingredients of the placebo effect, the agents that guarantee the impossibility of the inert.

Notes

1. A longer version of this essay was presented to the Robert Wood Johnson Seminar on Healing and Placebo: Medicine, Religion and Ritual, Harvard Medical School in 2014. Research on Navajo healing was funded by the National Institute of Mental Health and approved by the IRB at Case Western Reserve University. Research on Roman Catholic exorcism was funded by the Social Science Research Council and approved by the IRB at the University of California, San Diego.
2. Marrett, R. Sacraments of Simple Folk. Oxford: Clarendon Press, 1933.
3. Rhino Horn Use: Fact vs. Fiction. 2010 http://www.pbs.org/wnet/nature/episodes/rhinoceros/rhino-horn-use-fact-vs-fiction/1178/
4. Ellis, R. Poaching for Traditional Chinese Medicine. EAZA Rhino Campaign 2005-6. http://www.savetherhino.org/rhino_info/threats_to_rhino/poaching_for_traditional_chinese_medicine
5. Milliken, T., Shaw, J. The South Africa – Viet Nam Rhino Horn Trade Nexus: A deadly combination of institutional lapses, corrupt wildlife industry professionals and Asian crime syndicates. TRAFFIC, Johannesburg, South Africa, 2012.
6. Do, H. B., Dang, Q. C., Bui X. D., Do, T. D., Pham, V. H., Vu, N. L., Pham, D. M., Phan, K. M., Doan, T. N., Nguyen, T., Tran, T. Medicinal plants and animals in Vietnam, Volume II (first edition). National Institute of Medicinal Materials, House for Science and Technology of Hanoi, Viet Nam, 2006.
7. But, P., Tam, Y-K, Lung, L-C. Ethnopharmacology of Rhinoceros Horn 1: Antipyretic Effects of Rhinoceros Horn and Other Animal Horns. J. Ethnopharmacology, 30: 1990, 157—168.
8. But, P., Lung, L-C, Tam, Y-K. Ethnopharmacology of rhinoceros horn. II: antipyretic effects of prescriptions containing rhinoceros horn or water buffalo horn. Journal of Ethnopharmacology, 33:1991, 45—50.
9. Guilford, G. Why Does a Rhino Horn Cost $300,000? Because Vietnam Thinks It Cures Cancer and Hangovers, 2013. http://www.theatlantic.com/business/archive/2013/05/why-does-a-rhino-horn-cost-300-000-because-vietnam-thinks-it-cures-cancer-and-hangovers/275881/
10. Csordas, T.J. The Sacred Self: A Cultural Phenomenology of Charismatic Healing. Berkeley: University of California Press 1994.
11. Csordas, T.J. Body/Meaning/Healing. New York: Palgrave 2002.
12. Grob, J. A Major Revision of the Discipline on Exorcism: A Comparative Study of the Liturgical Laws in the 1614 and 1998 Rites of Exorcism. Dissertation submitted to the Faculty of Canon Law, Saint Paul University in partial fulfillment of the requirements for the degree of Doctor of Canon Law. 2006: 115—16.
13. Dermine, F-M. Carismatici, sensitivi e medium. I confini della mentalità magica. Bologna: ESD-Edizioni Studio Domenicano, 2010.

Thomas J. Csordas is the Dr. James Y. Chan Presidential Chair in Global Health, Distinguished Professor in the Department of Anthropology, Director of the Global Health Program, and Co- Director of the Global Health Institute at the University of California, San Diego. He has conducted ethnographic research among Charismatic Catholics, Navajo Indians, adolescent psychiatric patients in New Mexico, and Catholic exorcists in the United States and Italy. Among his publications are The Sacred Self: A Cultural Phenomenology of Charismatic Healing (1994); Embodiment and Experience: The Existential Ground of Culture and Self (1994); Language, Charisma, and Creativity: Ritual Life in the Catholic Charismatic Renewal (1997); Body/Meaning/Healing (2002); and Transnational Transcendence: Essays on Religion and Globalization (2009).

Traces of the Future: An Archaeology of Medical Science in Africa

Paul Wenzel Geissler, Guillaume Lachenal, John Manton, and Noémi Tousignant, editors

Intellect Ltd./University of Chicago Press, 2016, 256 pages, 500 color plates

The first reaction to an encounter with Traces of the Future: An Archaeology of Medical Science in Africa is likely to be a set of questions. Firstly, “what is it?” This 7×9” hardcover book, brimming with pleasingly displayed full-color photographic contributions by 18 authors, resembles a museum exhibit as much as it does a conventional academic volume. The contributing authors themselves describe it as a “sutured assemblage” (12) and a “fragmentary and idiosyncratic” (27) result of collaborative research presented in “a book-like package” (12).

Traces of the Future is the remarkable product of a long-term collaborative research project by a group of anthropologists, historians, and photographers. It examines the legacies of twentieth century biosciences in Africa in five historical sites of transnational medical science. Each of these sites manifested dreams of medical modernity and social progress characteristic of the twentieth century, dreams which are unevenly remembered in these sites today. The book is driven by the diverse research objects that it assembles. Beyond some rewarding orienting essays, the bulk of the book appears as a profusion of material. Each chapter includes an array of images, including fieldwork snapshots, archival documents, blueprints, manuscripts of musical scores, and unearthed beakers. These images are interspersed with timelines, interview transcripts, fieldnote excerpts, quotes from academic literature, and essays.

It also features haunting professional art photographs of Amani Hill Research Station by Evgenia Arbugaeva and Mariele Neudecker. Arbugaeva’s photos, which were previously presented in National Geographic, provocatively reenact mid-twentieth century scenes of science, now staged by retired Tanzanian men of science in dusty laboratories and overgrown gardens. Neudecker pictures Amani in the style of Dutch and Flemish Vanitas paintings that feature prominent symbols of death. These photographs evoke intensities of nostalgia and loss complicated by lasting legacies of exploitation.

One might wonder what a reader is meant to do with such a diverse array of materials. Working through this book produces the same feelings of pleasure and disorientation as pursuing archival research. Is this to be taken as a kit for do-it-yourself analysis, beautifully designed but with some assembly required? Indeed, the introductory essay is presented as a set of instructions for readers-cum-archaeologists who would work through the book’s complicated stratigraphy to excavate futures past. However, the bewilderment is intentional and digging through the collection reveals a volume with powerful and cohesive theories of materiality, affect, and time.

The book approaches the material remains of the past not as clues for reading history or recreating past events, but as the already lively presence of the past in the present. This is thoroughly a study of science in early twenty-first century Africa, often characterized as the period of global health, but it is conducted with a sensitivity toward the traces of twentieth-century scientific activity. These archival documents, items of laboratory equipment, demolished buildings, and re-performances of prior modes of work manifest past orientations toward the future, thereby destabilizing and disarranging (16) present organizations of time, history, and possibility.

As anthropologists rekindle their interest in temporalities outside of the homogenizing time of modernization and progress, this volume dives into the rhythms of life in the late-colonial and early-independence periods of high modernism in Africa. It finds a plethora of timelines, a multiplication of the temporalities of the development era. Indeed, unilineal timelines of development appear as rare accomplishments of synchronization, or temporary harmonizations of temporal experience. The diverse materials presented evoke the entanglements of different periods, but they are presented in such overabundance that they resist letting any single periodization sit undisturbed for too long. Presentist views of medical science are abetted by active processes of forgetting the past, accomplished through the neglect and destruction of materiality. If past temporalities are manifested by their material presence in things, then the destruction of archives represents the death of temporality and the loss of contemporary diversity in ways of doing science. In five multidimensional chapters, the authors excavate surviving relations to time, history, and progress across sites of transnational scientific work.

At Uzuakoli Leprosy Centre in Nigeria, John Manton introduces readers to a site of medical research that once set the international treatment standard for leprosy. However, this medical history is subject to active processes of forgetting as the site’s archives become food for termites. While histories of once globally significant medical science are literally eaten away, surprising cultural legacies live on. The music of Ikoli Harcourt Whyte, a patient-activist instrumental in the founding of the center, continues to be remembered in Nigeria. Excerpts from a radio documentary on Whyte are recorded in the chapter, but despite Manton’s efforts to seek “attunement” with the rhythms of life at Uzuakoli, the liveliness of Whyte’s music is only partially captured by the musical notations left behind.

In the Cameroonian site Ayos, Guillaume Lachenal, John Manton, and Joseph Owona Ntsama find themselves steered onto well-worn paths of commemoration that seek to heroize Eugène Jamot, the French doctor who led the site in the 1920s and 1930s. The authors profile the “monument men” who guide visitors through the memorialized histories of Ayos, focusing on Jamot and the “Jamotains” whom he trained. Such practices of memorialization, they find, mystify the history of the place. In contrast, Ntsama works through documents seeking lively traces of his Jamotain father that depart from the memorialization practices endemic in Ayos. The authors also unearth pasts forgotten by heroic narratives of histories. They trace the site’s founding as a sleeping sickness camp in German Kamerun, headed by a doctor who would become a prominent Nazi racial theorist. In pursuit of these undermemorialized pasts, the authors find oral histories of German-era mass graves that maintain their German place-name. Instead of telling Ayos as a story of Jamot, the savior of Cameroon, the authors reinterpret it as a far more ambivalent site of sacrifice, of death and disposal in the name of progress.

At Amani in Tanzania, Geissler, Ann Kelly, Peter Mangesho, Manton, and René Gerrets excavate the scientific practices and social habits of a colonial hill station. Currently operated by a skeleton crew, Amani has gone through periods of being central to imperial and postcolonial science as well as stretches of near abandonment. In investigating the remains of its mid-twentieth century manifestations, the authors find long histories of transnational entanglement, bringing together British and Soviet scientists with East African colleagues and employees. Alongside unrealized blueprints and cherished photographs, they find spaces marking demolished buildings and the distinctive aesthetics complex of lawns, cars, and gardens that continue to grow, rust, and offer harvest in the twenty-first century. The most striking episode of this chapter deals with the uncomfortable reenactments of mid-twentieth century science involving a retired British entomologist and his Tanzanian former assistants. These reenactments end up performing the complicated intertwining of racial segregation, intimacy, and paternalism of the late colonial period in the present moment, clarifying the resonance of those dynamics today while unsettling stable depictions of temporality.

Noémi Tousignant introduces readers to Niakhar. This Senegalese site has been the object of demographic observation since the 1960s, initiated by the Senegalese government and administered by the French Institute for Development Research. Tousignant interprets this demographic work as a form of memory-making, producing documentation through repeated observation. The memories of these past encounters break into the present in the form of material traces of scientists, but also in popular forms of recollection. Indeed, Senegalese researchers recall diverse forms of engagement and interaction with communities of study, while children born in the area bear the names of past researchers. This chapter explores the continued life of research archives, as well as their planned-for obsolescence. It describes the interplay between private and institutional possession of archival materials, as well as the reemergence of archival data and the disposal of demographic material that has lapsed into presumed irrelevance.

Finally, Geissler and Ruth Prince examine three institutions in Kisumu, a city in Kenya that has long been an important site of transnational research. They delicately trace memories of past science alongside current incarnations of research. Presented in the chapter are ethnographic descriptions and historical newspaper accounts of “Russia,” a hospital funded by the Soviet Union. This hospital became the place of state violence at its opening ceremony in 1969, when first head of state Jomo Kenyatta’s presidential guard opened fire on Soviet-aligned opposition supporters. “Russia” is (strikingly) now home to research funded by the US National Institutes of Health. The authors also visit the Kenya Ministry of Health’s Division of Vector-Borne Diseases, where Geissler himself conducted parasitology research in the 1990s. The government division reinvented itself following the structural adjustment of the 1980s to embrace transnational projects, moving from contract to contract to fund research activities. Today, the division operates at minimal capacity, waiting for a new project to restart research. Finally, the parastatal Kenya Medical Research Institute has become the new partner of these international research projects, reordering their research priorities to accommodate the NIH. This chapter senses the traces of older patterns of science in Kisumu that were consonant with promises of full employment, populist understandings of citizenship, and utopian visions of the future, but also with authoritarian government and state violence. These forms of science are remembered by many, but they are also subject to active processes of forgetting promoted by current global health initiatives with narrower visions of development.

The hermeneutic strategy of this book is to multiply objects of analysis, to place them in relation to each other in ways that facilitates interpretation but discourages pat conclusions. The volume makes effective use of juxtaposition. The authors point out that new American NIH funded research is housed in buildings that signal earlier Soviet and Panafrican research orientations. Quotes from Beckett’s Waiting for Godot stand alongside the activity schedule of a practically deactivated government research division. Alongside past manifestations of science, global health appears antagonistic towards memory, invested in forgetting prior modes of science as it embraces relatively narrow visions of development with different fault lines of inequality and exclusion.

Just as striking, however, are those remnants of past science that seem indifferent to existing narratives of history altogether. It is hard to put together a narrative of scientific progress, colonial trauma, or postcolonial promise based on the materials presented. Embraceable visions of progress remain elusive in this book, as do smoking-gun depictions of colonial violence. From the rumored excavation of mass graves at Ayos to the “man-baiting” of biting insects at Amani, one wonders how scientific practices reenact and amplify other colonial traumas. Likewise, the book does not pin down familiar topics of analysis such as race, class, or gender in ways that offer concrete takeaways, but an active reader would find more than enough on those topics.

In an epilogue, Iruka Okeke asks about the histories left out of this archaeology of medical science, wondering how a consideration of the legacies of African-led research in African universities could provide often-overlooked grounds for excavating futures of African science. Indeed, this excavation of the affective life of science in sites that hosted transnational research projects in the mid-twentieth century should inspire an attunement to the intensities and possibilities of science outside of its presumed epicenters. As the authors write about the unrealized promises of Amani Hill Research station, “it never quite becomes home, it never really changes itself or the world, and eventually one must leave it” (111).

This book makes original, invigorating contributions to scholarship on the colonial heritage of science, the history of transnational research collaborations, and African medical sciences. It is also recommended for those interested in mid-twentieth century narratives of progress. It shows the multiplicity of these timeliness, presenting material as an accumulation of traces heaped up in the contemporary moment, fertilizing contemporary discourse about the future. Perhaps its most distinctive contribution is to the practice and presentation of qualitative research. Those interested in experimental ethnography, ethnographic archaeology, collaborative research, and novel modes of representation should find much to grapple with. Those interested in affect, nostalgia, or ruins will find a fresh and rewarding treatment of these nodes of analysis. Indeed, each chapter works to resist trope, following the productive discomfort of not hearing familiar stories or, just as discomfiting, hearing too many stories to summarize. This book gives the reader too much provocative material to construct a stable narrative about the past, but perhaps just enough to tell some new stories about the future.

Damien Droney is a lecturer in the Department of Anthropology at Stanford University where he works in medical anthropology, science & technology studies, and African studies.

Describing the research programme driven by the Thousand Days research group at the University of Cape Town, I noted that,

The emergent field both synergises a range of disciplines in the bio- and social sciences and develops new sites of humanitarian intervention, reframing current debates about population, well-being and ‘the best interests of the child’ in newly biological ways. As these findings are taken up in policy and practice, we are witnessing the making of a social object with material effects’ (www.thousanddays.uct.ac.za).

Our project has explored that making, its prior conditions and its effects.  As Michelle Pentecost noted in her opening to the Somatosphere series, the framing ‘offers fertile ground for careful thought about contemporary concepts of life, life-giving and care, offering spaces for critically assessing not only how states and people understand and enable health and well-being but also how life is conceptualized by different disciplines.’  We have traced both the ways that medical and scientific knowledge about life come to be interpolated in everyday worlds and the ways that people engage with, respond to – or indeed, ignore and subvert – it as they grapple with the possibilities that reproductive worlds afford. Our stance is deliberately invested in how everyday lives are made, and how scientific knowledge and the policies it enjoins are folded into those lives. We have traced how new knowledges, particularly in epigenetics, are rendered into policy and state practice, and come to shape imaginaries not only of individual lives but of population futures. In the process, they materialize certain kinds of relations (embodied, physiological, maternal) as more significant than others, and these in turn have the effect of producing a powerful and sometimes punishing discourse of, among others, the good mother, the responsible citizen and the expert.

Earlier contributions to the series trace questions of birthing, medicalization, nutrition and care. They offer grounded accounts from Southern Africa of the ways that different forms of knowing take root in everyday practices associated with reproduction. Contributors explored the formation of the field (Pentecost); worlds of birthing (McDougall, Rogerson, Ferreira); nutrition, nourishment and care (Truyts, Waltz, Ncube). These projects demonstrated the interwoven nature of imperative; the ways that the state understands and frames the imperative to act, to care, to intervene. They spell out the ways that ordinary practices of child-bearing and rearing are shaped by knowledge practices and histories that produce certain populations as sites for medical and pastoral intervention and run the risk of replicating older colonial practices even as they institute new forms of power.

In this second part of the series, we deepen these themes.  The framing of the first thousand days of life is, above all else, a way of imagining individual and population futures. Intervention during pregnancy and early childhood is anticipated to have lasting impacts on individual well-being and to carry those through to the next generation. Laudable in their intention, the interventions we have traced in South Africa have not fully grasped the uneven terrain on which sociality is built; the historical shaping of individual lives and collective futures. The effect is that policy imagines an ahistorical individual who will receive and implement the ministrations of experts in particular kinds of knowledge. By contrast, we have been concerned to show the ways that understandings about life are multivectoral, drawing on a range of repertoires that include but are not limited to biological notions. Our work suggests that it is important to understand the ways that ‘the biological’, its pasts and futures, is constituted as a social fact through a range of agencies; states, educational institutions, scientific imaginaries, technologies, policies and the everyday encounters that shape both how we come to inhabit a shared form of life and how we understand it.  It suggests also that it is critical to understand the stakes of life for different players.

As the global campaign around the First Thousand Days deepens and is taken up in a variety of sites and states, we continue to explore the meanings that are generated in specific locales, always understanding these to be globally inflected (and sometimes to be global nodes themselves – cf. Pentecost 2017).  We are committed to developing modes of analysis that are reflexive and reflective of Southern African contexts.

This series extends work on reproductive and birthing worlds. It also takes up the theme of the state, asking how and in what ways the state is implicated in reproduction and population futures. In so doing, it asks us to consider how the state materializes (for) families, women of childbearing age, those responsible for reproduction and care, and so forth. It also asks us to consider the ways that state and population are imbricated in contemporary African postcolonies.  Drawing inspiration from Poole and Das’s (2004) interrogation of ‘the margins of the state’, we ask how life is constituted in domains in which the state imagines itself – or is imagined – to have considerable sway and responsibility even as its reach is limited or fractured. Our commitment remains to fine-grained ethnographic accounts that draw from and may put pressure on theories ‘from the north’ by offering accounts from and of Southern Africa.

The First Thousand Days: A South African Example

South Africa has not yet met its MDGs or SDGs in relation to maternal, infant and under-five morbidity and mortality (StatsSA 2015), which remain very high despite the (uneven) medicalization of reproduction. Critical of a formulation that focuses on child survival as ‘a health issue’, while ‘ignoring the wider social and economic determinants of health’ (2015:17), the StatsSA report on the MDGs notes, ‘There has … been insufficient recognition and operationalisation of a multi-sectoral response designed to address the social and economic, and not only medical, determinants of child survival’ (2015: 18).

As of 2013, nutrition policy in South Africa explicitly focuses on ‘the first thousand days of life’.  Derived from the SANHANES report (2013), a nationwide health and nutrition survey which found that while decreasing, rates of infant malnutrition and stunting remain unacceptably high, with devastating consequences for individual well-being, ‘national development’ and population developmental outcomes, the policy aims to put in place mechanisms to intervene in population malnourishment.   In the Western Cape, the province in which I work, this policy has been augmented by a campaign aimed simultaneously at medical practitioners in public health facilities and at their clients.  The First 1000 Days campaign, launched on 17 February 2016, by the Western Cape Department of Health, in partnership with the Department of Social Development (see Figure 1), is an attempt to develop the kind of a multi-sectoral approach envisaged by the critique of the MDGs.  It seeks to ameliorate maternal and infant well-being and to augment existing policies on health care provision for these categories with a wider campaign that will, among other things, teach beneficiaries proper nutrition, offer support for early childhood development, provide parenting skills, and address apartheid’s legacies that continue to manifest in poor infant and maternal outcomes.

Figure 1: Campaign Logo. Source: https://www.westerncape.gov.za/general-publication/first-1-000-days-campaign

The campaign extends the 2013 nutrition policy, adding two further elements: ‘love and attention’ and ‘play and stimulation’. The campaign website states: ‘We believe that the first 1000 days in a child’s development, starting from conception, moving through pregnancy, birth, and after the first 2 years of life, are crucial for securing a child’s bright future.’  The slogan, replicated here, is a directive and injunction. Its dense imagery, resonant with some of the SDG symbols symbolizes nutrition, love and learning within a directed period. It has moral force and offers a clear set of temporal framings.  The poster on which it appears foregrounds the mother-child dyad as the site of intervention while also drawing on wider networks, such as fathers and ‘communities’.  It includes the logos of both Departments of Health and Social Development, along with hotlines for substance abuse, violence and abuse, early childhood development, and health-related queries. In other words, this intervention clearly stages the state, particularly in its manifestation as those sectors responsible for health and social well-being, as a key agent in what is often imagined as the private work of social reproduction, and it simultaneously positions the state as arbiter of expert knowledge and source of advice.

I suggest that, like other campaigns elsewhere in the world (Thurow 2016), this project seeks to instantiate a new form of life; a new set of agreements about what it is to be properly human. It has two key objectives, temporally-oriented; the goal of improved population health beyond the individual, or indeed, this generation – thus, an orientation to the future – and a recognition of the pasts that continue to shape access to health care and to produce inequitable health outcomes. An implicit assumption is that people need to be educated, and that the people who need to be educated are mothers.  While the campaign has worked to include ‘fathers, families, and the community’ in its remit, and has initiated an advertising campaign (for example, offering signage in commuter taxis), the maternal-child dyad is nevertheless the core target and most interventions are targeted at women. There are several reasons for this. This focus on the maternal body and the mother-child dyad has diverse origins: a highly medicalized birthing sector (see Rogerson, Ferreira, McDougall in earlier contributions to this series); the impact of HIV/AIDS and, vertical transmission in particular, on health care policy; and, more broadly, the ways that here, as elsewhere (see Richardson 2015), the maternal body is envisaged as an ‘environment’.  It is influenced too by the gender normative framing of family that pervades South African policy implementation, despite the 2012 White Paper on Family’s commitment to recognizing the diversity of families in South Africa. Another, in the fact that the maternal body is the state’s closest point of contact with ‘family’, both through health policy and in the de facto distribution of the state’s Child Support Grants.

The 1000 Days Campaign makes human ends (such as love, play, social interaction) the means through which population well-being is secured. In other words, social worlds and human relations are instrumentalised to population ends.  The campaign is a classical illustration of neoliberal risk discourse: it identifies a population, duratives, a set of tools and an effect. However, despite economic policies that are broadly neoliberal, South Africa is not a neoliberal state and its health policies are not fully biopolitical.  (National government holds a welfarist stance, as evidenced, for example, in the allocation of state grants to more than 16 million people.) Nevertheless, there are aspects of surveillance and intervention that social scientists have come to identify as having biopolitical roots, in particular, a re-responsibilising of women as bearers of life and as mothers.  I say ‘re’-responsibilising here because there is a far longer history of holding women, particularly African women, responsible for reproductive well-being (see Pentecost and Ross, n.d.; Pentecost 2017); a history that traces its origins to concerns about kwashiorkor in urbanizing areas in the 1950s, and more recently to the problem of mother-to-child (vertical) HIV transmission. Meloni and Testa (2014: 445) have noted that, as a field, epigenetics gives rise to ‘an expansion of the concept of responsibility’, ‘fostering the materialization of new bonds among generations’ (italics in original).  Given the disruption to generational relations caused by HIV and the state’s dilatory response to it until 2004, the nature, form, capacity and power of responsibilisation to re-generate kinship remains to be seen.

Our work shows that ‘new’ epigenetic findings continue to rest on understandings of the maternal body that have longer histories, and that embed normative Eurocentric ideas of both the body and the maternal role, and that increasingly instrumentalise human relations, including affects, desires and play, to population ends. This suggests to us that ‘the maternal’ as it appears in policy is ‘a knowledge effect’; a product of a specific way of thinking about an issue or problem. Here, the problem is the future well-being of the population and the means to accomplish it. It seems to us that it is materializing in what Andrew Hartnack (2016) has identified as a form of biopolitics characterized by maternalism; a form of power that has a long (although relatively under-acknowledged) colonial genealogy. Such modes of governance are unevenly distributed and mesh with intense forms of patriarchal control in different contexts. These produce uneven effects across provinces and national boundaries.

In the introduction to their recent book, Living and Dying in the Contemporary World, Clara Han and Veena Das (2015: 2) make the critical point that questions of life, once the domain of philosophy, humanities and related fields, have become reductionist in their material focus. They argue that narrowing down the notion of life to biological life alone has drawn a boundary between more classical questions about life… and the so-called new questions that assume that unless the prefix bio- can be added to a concept, that concept becomes irrelevant to our contemporary conditions.

Their examination seeks to undo the privileging of biology in understanding ‘newness’. They suggest that the new is ‘embedded in and transforms ‘older forms’ and, offer, through an exploration of singularity, a way to arrive at the question of how to pay attention to the fragility of life – including the forms of agreement we make in and of it. We hope that the next contributions to the series does justice to their call.

References

Han, Clara and Veena Das. 2015.  Living and Dying in the Contemporary World: A Compendium.  University of California Press. Berkeley.

Hartnack, Andrew. 2016.  Ordered Estates. Weaver Press. Zimbabwe.

Meloni, Maurizio and Giuseppe Testa. 2014.  ‘Scrutinizing the epigenetics revolution’. BioSocieties, 9:431-56)

Pentecost, Michelle and Fiona C. Ross.  The first thousand days: temporalities of motherhood in South Africa. (under review).

Pentecost, Michelle. 2017. The First Thousand Days: Global Health and the Politics of Potential in Khayelitsha, South Africa. Unpublished PhD dissertation, University of Oxford.

Poole, Deborah and Veena Das. 2004. Anthropology in the Margins of the State. School of American Research Press. Santa Fe.

StatsSA. 2015. Millenium Development Goals Report. Statistics South Africa. Pretoria.

Thurow, Roger. 2016.  The First 1,000 Days: A crucial time for mothers and children – and the world. Public Affairs. New York.

Professor Fiona C. Ross holds the AW Mellon Chair in the Anthropology of the First Thousand Days of Life and is the Head of Section in Social Anthropology at the University of Cape Town. Her research explores the making of children as social beings; the crafting of childhoods; and the constitution of the child’s social world in Southern Africa. Her previous publications explore the effects of violence and redress in South Africa and include Bearing Witness: Women and the Truth and Reconciliation Commission in South Africa (2002. Pluto Press: London) and Raw Life, New Hope: Decency, housing and everyday life in a post-apartheid community (2010. UCT Press: Cape Town). For more information click here – See more at: http://www.thousanddays.uct.ac.za/1000days/people#sthash.UzaHrQ0q.dpuf

Already in first year, the Research Practice and Design Studio course taught us theories and practices required for qualitative and quantitative research. However, in our undergraduate bubble, these late Tuesday afternoon sessions seemed somewhat distant from conducting actual research. In order to address this perceived disconnect, our course instructor, Dr Laurie Corna decided to adopt a problem-based learning approach that allowed us students to be positioned as emerging researchers whilst learning theoretically about a range of issues central to quantitative and qualitative research designs.

A new research methods course was designed around a series of case-based learning activities that culminated in students conducting their own mixed-methods research. Students’ assignments for the course involved working in teams of two on applying and executing various aspects of the research process in relation to the predefined topic “Physical activity in the city of London”.[1] That is, we learned how to articulate research questions, identify ethical problems, write a research proposal and develop related interview topic guides as well as survey questionnaires. Once we had conducted our research, we were tasked to present our findings in the form of a poster during a “Research Showcase” and create a final report on the research project. Through such an interactive approach to teaching and learning, we were provided with practical exposure to conducting research, dissemination and presenting skills relevant within and beyond the classroom. Moreover, since the Research Showcase was student led and responded to feedback from previous first-year students, it fostered greater engagement between students and their teachers.

As undergraduate students, we found that conducting our own research project early on in our education was a unique experience, providing an opportunity for us to practically apply theoretical knowledge. Also, we considered it really important to not only learn to gather data, but also to disseminate them since we were aware that this is a core skill needed in academia and beyond (i.e. when working in NGO or government sectors). In particular, the Research Showcase taught us to present, explain and discuss our research findings. Yet, what was missing was a “real” conference feel and, thus, we decided with Dr. Corna to apply for funding from the College Teaching Fund to organize, together with the new first-year cohort, a professional and public Research Showcase.

Planning the Research Showcase

As second-year students, we were in a unique position to assist in the development of such a professional and public Research Showcase as we had first-hand experience of organizing a similar event on a smaller scale. Dr Corna and her colleagues placed us at the center and allowed us to assist with the planning and execution of the event. For example, I was involved from the initial project development stage, which provided the opportunity to understand the mechanics of writing a successful grant proposal. Later in the year, I was joined by another second-year student along with volunteers from the new first-year cohort in order to shape and organize a Showcase that reflected our and our fellow students’ interests.

The heart of this project formed the collaboration between the student organizers, lecturers and students on the research course. Through regular meetings, students from different year groups were able to interact and share ideas with input from academics, providing a reminder of the budgetary constraints to our often over-the-top plans. Meeting regularly allowed for discussions on the intricate planning details from inviting prominent keynote speakers to organizing logistics and coming up with interactive activities for the day. Moreover, to create an interactive learning environment between first-year students and Showcase organizers, a Facebook group was set up and updated with information about the Showcase and advice on conducting research. This was in addition to second-year students providing examples related to our research projects from the previous year and co-teaching a session on poster preparation and presentation.

The Research Showcase

Our Showcase took place on 18^th March 2016, bringing together students and academics from across the faculty for an afternoon of interdisciplinary presentations, discussions and exchanges. The Showcase began with a panel event on “Urban Health” featuring prominent academics including Professor Anthea Tinker, discussing her work on how London must adapt to meet the needs of an ageing city; Dr Stephani Hatch from the Institute of Psychiatry, Psychology and Neuroscience presenting her research on urban mental health in South London and Dr Jenny Mindell from University College London’s Transport Institute speaking about the relationship of travel modes, health and community severance. These presentations allowed students to see how research is presented professionally in academia and what its impacts on the real world can be.

Following the panel and lively discussion, the poster presentation began with students presenting their posters to a college-wide audience. On the one hand, this gave students the opportunity to discuss their experiences of conducting research and forge connections with academics from across departments. At the same time, their posters and presentations were marked by department staff based on criteria such as content, key poster elements, clarity of presentation, and structure as well as ability to answer questions and presentation style which added to the buzz and excitement. Once all posters were discussed and marked, presenters and the audience shared a meal together, systematically evaluated the event and finally participated in an interactive Global Health quiz that had been developed by the Showcase organizers using the online platform ‘kahoot’ with prizes for the winners.

The student evaluations showed that students particularly appreciated the opportunity to engage with academics and researchers; someone wrote that it was exciting to be ” able to engage with researchers and see how the research we did was similar and relevant to the research they’re doing in the real world. Also the involvement of other members of the staff from the faculty was interesting in terms of them providing different views on the issues we looked at”. Others highlighted the positive experience of learning about methods not only in a theoretical way, but rather through actual practice or, in the words of one of the students: “being able to put the skills we learnt into practice and then being able to discuss our work with researchers who gave their own opinions and perspectives”. Importantly, it was also highlighted how the event fostered a sense of achievement and community through a pleasant and buzzing atmosphere. A student noted: “great atmosphere, really social and relaxed and it ensured you actually put your skills to use and not to waste”. However, others would have liked even more involvement of teaching and research faculty in the event stating that it would be great had there been more people involved from other departments “to share different perspectives on the topic”. All in all, the Showcase felt like a great achievement that combined, theory and practical skills with community building and enjoyment.

Hannah Mohammad is a final year BSc Global Health & Social Medicine Student at the Department of Global Health & Social Medicine, King’s College London. Her research interest focuses on the social determinants of health and the ways in which these impact on refugee health, infectious diseases and health technologies. Her final year thesis is on the politics of primary healthcare for refugees and asylum seekers. She is Co-President of the King’s College London Global Health Society.

The “Experiments with pedagogy” series is edited by Hanna Kienzler.

Acknowledgements

I would like to thank all the first-year Global Health & Social Medicine undergraduate students for being active participants throughout the process of planning and delivering the research Showcase. Particularly so to the four student volunteers who helped in organising the Showcase; Deborah Fabiyi, Robert Smith, Emily Allchin and Diane Tuan. I would also like to thank my fellow second-year research assistant Saida Sheriff and a special thank you to Laurie Corna and Hanna Kienzler for supporting us throughout the project, and Laurie for delivering the research module and creating the Showcase. Funding for carrying out the event was received from the College Teaching Fund (King’s College London).

[1] The decision to delimit the research field was due to the fact that it enabled Dr Corna to get group-based ‘ethics approval’.