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Science, Medicine, and Anthropology
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Teaching Medical Anthropology by Ari Gandsman

19 Avril 2017 - 3:32pm

In the decade since becoming a full time professor, medical anthropology has been one of my core courses. I have taught it seven times.  Although the basic structure of the course remains similar, emphases have shifted over time. Perhaps I can best highlight the evolution of the course through a discussion of readings I use since readings are the backbone of a syllabus.  Even though I generally do not follow texts closely since I see lectures as overlapping but also supplemental and complimentary to readings, I try to mirror topics that they will be reading about, often highlighting a general theoretical literature or approach while the students read a single illustration.

Starting from the beginning, my history of medical anthropology remains the same, focusing on when “medicine” was subsumed into broad and now antiquated anthropological categories of magic and witchcraft. I never stray far from Evans-Pritchard’s Witchcraft, Oracles & Magic Among The Azande, an apparent professional contractual obligation for meAlthough I have given them the entire ethnography [the abridged in print edition] to read twice in the past, I have more lately just given them a short excerpt, often “The Notion of Witchcraft Explains Unfortunate Events.” I once also used W.H. Rivers Medicine, Magic and Religion but, although fascinating and of historic importance, it proved esoteric for an undergraduate course.  When I first started teaching, I tried to include more on non-Western medical systems, including using ethnographies on Traditional Chinese Medicine or Tibetan medicine. More recent students may be disappointed that I do not delve further into non-Western medical systems, what many students with hazy ideas of the discipline may think a medical anthropology course should almost entirely consist of. I do this because my own research background and training as a medical anthropologist sees the discipline’s core strengths in its pursuit of biomedical technologies and practices as anthropological objects.

In addressing questions of medical pluralism, like many other colleagues, I have used Anne Fadiman’s The Spirit Catches You and You Fall Down, a book I first encountered as a teaching assistant at the dawn of the 21st century. It is accessible and students respond well to it, but I used it with certain hesitations; it is also anthropologically reductive and the “clash of cultures” is presented with such broad strokes that it may serve to re-enforce rather than challenge students’ long held stereotypes about non-western cultures (see Janelle Taylor’s critique here). On the other hand, because it works so well to ensnare student interest, I have had trouble abandoning it completely and have come back to it in the past.  This year, I chose Eula Biss’s On Immunity. If The Spirit Catches You presents a clash centered on competing explanatory models and conflict over belief, this personal non-fiction essay explores the world of vaccination fears without the exoticization. It is popular and accessible but also anthropological in a similar vein while also confronting students on “our” own “strange” beliefs. During this part of the course, I assign a first paper in which students analyze a form of “complimentary and alternative medicine” with the goal of trying to understand, among other questions, why people choose certain therapies when their “native” system may not endorse or recognize their use.

With a brief detour through culture bound syndromes that end with examining the DSM-5 itself as culture bound, the next section of the course proceeds historically through the discipline’s history as anthropologists tentatively moved towards analyzing biomedicine through explanatory models and the role of illness narratives and illness experience. I have used ethnographies in the past, including Paul Stoller’s excellent autoethnography/cancer memoir Stranger In the Village of the Sick. This year, I decided to experiment with form in choosing David Small’s Stitches, a graphic novel that illuminates a classic biopsychosocial account of illness in which the illness experience is inseparable from emotional states, social environment and dysfunctional family dynamics (in particular since the illness is iatrogenically induced by his doctor/father’s use of x-rays). For this section, I have students write their own illness narrative, either drawing from the experience of a family member or an example drawn from popular culture (a TV show, film, podcast, blog. i.e. as a model, I often use Breaking Bad as a good – or bad – example featuring this century’s greatest pop cultural illness narrative).

From the individual suffering involved in illness narratives, the course then proceeds to address issues of social suffering and structural violence, not areas of the field in which I orient myself towards but ones that are important to represent as part of our discipline’s core strengths. When I started teaching I used Aids and Accusation. Since then, I have used some of Farmer’s other collected volumes, as well as João Biehl’s Vita and Philippe Bourgois’ Righteous Dopefiend. Following in that tradition, I am using Fresh Fruits, Broken Bodies by Seth Holmes this year. Given that this course attracts a lot of medical students who have never taken an anthropology course before, often with limited ideas of what the discipline is about and who subsequently express to me bewilderment at what a seemingly strange class it is compared to the other health-related social science courses they may take, the idea of using an ethnography by an MD/PhD is appealing and helps to bridge the course’s student divide.  Furthermore, as a US citizen who has spent almost two decades in Canada but now feeling alienated by the new political reality south of the border, the choice was also shaped by the thought of having students read about the everyday lives and realities of one of the primary villains of Trump’s campaign rhetoric.

If this work takes Trump’s targets as empathetic ethnographic subjects allowing students to examine issues of inequality and structural violence, my next choice reveals its flip side – the world of Trump voters inside the rust belt. Here I reached outside of the discipline yet again to popular journalistic non-fiction in picking Dreamland: the true tale of America’s opiate epidemic by Sam Quinones. If Trump was put into office by feelings of hopelessness and despair from rust belt of voters that also live in the opioid “death belt,” Dreamland offers a sympathetic window into those lives while also showing the larger geopolitical economy connecting illicit narcotic markets to pharmaceuticals to changing medical practices to hopelessness that have all shaped the epidemic. It also helps to provide a launching pad to explore more general anthropological issues around public health.

The final part of the course focuses on the anthropology of biomedicine. Margaret Lock and Vinh Kim Nguyen’s An Anthropology of Biomedicine is an obvious choice and a wonderful text that I have used twice before but students have found it too difficult. It would undoubtedly work better for students in their final year of undergraduate study, a more advanced rather than introductory medical anthropology course, and/or for a class comprised exclusively of anthropology students who already have a strong base in the discipline. This year, now feeling somewhat sheepish over having only assigned one ethnography and three other books written by non-anthropologists, I make them dive into journal articles – each handling the different topics – from organ transplantation to genetics to new reproductive technologies and so on.

Download the syllabus here

Ari Gandsman is associate professor in the Department of Sociology and Anthropology at the University of Ottawa. 

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

Luhrmann and Marrow’s Our Most Troubling Madness by Murphy Halliburton

18 Avril 2017 - 9:19pm

Our Most Troubling Madness: Case Studies in Schizophrenia Across Cultures

T.M. Luhrmann and Jocelyn Marrow, editors

University of California Press, 2016, 304 pages

 

A key premise of this volume of ethnographic case studies is that schizophrenia, or the various conditions we label as schizophrenia and related psychoses, varies in crucial ways in terms of experience, prognosis and outcome in different sociocultural contexts. Tanya Luhrmann’s introduction to the volume, which features twelve articles presenting twelve individuals diagnosed with schizophrenia (including three cases presented by Luhrmann), casts doubt on the biomedical model of schizophrenia, or at least the strong biomedical model where an individual’s biology is the determining factor in the pathogenesis of schizophrenia. Support for this critique comes from within the fields of psychiatry, psychology and related disciplines, and not just from anthropology, the disciplinary home base of many of the authors in this compilation. This supports the volume’s efforts to speak to an audience beyond the contributors’ own disciplines and “serve as a positive catalyst for change” in how we treat psychosis, especially in European and North American settings (5).

The introduction also briefly traces the history of theories of schizophrenia in psychiatry and anthropology, including moments when the two fields overlapped as with Gregory Bateson’s theory that schizophrenia results from a “double bind” that develops in a person’s psyche from conflicting social cues. This theory, put forth by an anthropologist, had a significant place in psychiatrists’ understanding of pathogenesis until the rise of the medical model deflected the blame from families toward “random bad genetic luck” (16). Luhrmann points to recent literature that shows correlations between schizophrenic pathology and conditions related to race and class, and recounts the World Health Organization studies which demonstrate that people diagnosed with schizophrenia in developing countries show better outcomes, in terms of recovery and functioning, than people with the same diagnosis in developed countries.

The case studies, which come from India, the US, Ghana, the UK, Romania and Thailand, effectively show the sociocultural environment—in the form of social conditions and adverse events that occur in the lives of the afflicted—to be the driving factor in the development of psychopathology for the individuals profiled. All these individuals come from marginal economic circumstances or suffer some other form of adversity, such as racism. The two individuals from more socioeconomically stable situations are those that show the most stability and the best outcome: Meg, the Yale graduate from Neely Myers’ contribution and Sita, the middle class housewife living in urban South India profiled by Luhrmann and Padmavati. We do not see cases that would indicate that biogenetic pathology creates the problem, where biochemistry suddenly throws off an otherwise stable life. In fact, in Myers’ touching portrayal of Meg’s struggle to cope with her diagnosis and find housing, we learn that Meg’s mental breakdown ensues from her father’s suicide following her parents’ divorce. Of course, the possibility remains in these cases that these individuals may have been more affected by such adverse circumstances due to a biological vulnerability. Still, “schizophrenia is not a genetic lightning bolt” as Marrow and Luhrmann observe in the book’s conclusion. Rather it “is the story of the way that poverty, violence, and being on the wrong side of power drive us mad” (197).

Aside from the more general claim about the importance of sociocultural factors in the development of pathology, several cases show how living in a society where it is assumed that spirits exist and communicate with humans, hearing voices and experiencing other “delusions” do not seem to be as troublesome or as difficult to cope with. This is evident in the case of Charles from Ghana, Poi who lives in Thailand, and Sita, the housewife from Chennai, India, who is highly functional despite her delusions. These individuals have developed insights also promoted in some western settings by the Hearing Voices movement whose members try to improve the afflicted individual’s relations to his or her voices rather than try to eliminate the voices.

In the US examples in this book, voices and delusions are never interpreted as normal or positive—or as relatively “benign” to use Luhrmann and Padmavati’s label in discussing Sita’s case. Instead they are frightening and otherworldly and considered signs of pathology. John Hood, whom Luhrmann worked with in San Diego, said his delusions come from his “diseased brain.” A couple of observations he later added show he almost anticipates some of the anthropological insights offered in this volume. Luhrmann explains “he called himself a shaman throughout our conversation, and he was clear that if he had been born in India he would have been called a holy man” (31), revealing that he did not perceive his delusions merely as symptoms of a diseased brain. The possibility that a schizophrenic person in the West might be a shaman in another society has been raised and debated by anthropologists, and this point rings true to some degree when we consider the case of Sita. Sita and her father interpreted the voices she heard as “emanations and vibrations . . . of the divine stuff that exudes from God” (106). Sita is not a shaman, but she lives in a context where the idea of experiencing such emanations from the divine is not far-fetched. In fact, Sita’s father explains her experience as similar to the experience of darshan, the term for the visceral, sensory encounter with the divine Hindu worshippers seek at temples.

We also see in several of the contributions that religious or spiritual approaches to understanding illness/affliction conveys other benefits. Poi, a Thai woman who suffers psychotic episodes, saw her difficulties as due to spiritual problems, not as a mental illness, and after engaging in religious and spiritual healing, Julia Cassaniti, the ethnographer who tells her story, finds that her psychotic episodes became milder. In the case of a Romanian woman, Alexandra, whose faith is seen as a sign of her madness by her psychiatrist, we learn that an individual can have very different experiences with different religious institutions. Alexandra did not benefit from the views of the Romanian Orthodox church, which was once a primary source of care for the mentally ill but sees mental illness as due to moral failing. However, members of her evangelical Protestant church gave Alexandra invaluable social and psychological support and oriented her toward a positive and loving relation with God and Jesus.

In addition to his comment about shamanism and mental illness, John Hood from San Diego observed that “[i]t is the idea that you have a diseased brain that destroys you” and that “there is no greater stigma” than this (34). This anticipates why, as we see in several of the Indian cases in this volume, psychiatrists in India practice what Amy Sousa calls “diagnostic neutrality.” According to Sousa’s presentation of two sisters in India who are both diagnosed as schizophrenic—but do not both know this—psychiatrists in India usually do not reveal or fully disclose the implications of severe diagnoses to their patients and the patients’ family, focusing their discussions instead on the treatment regimen. Although this move appears paternalistic, it is seen as helping avoid distress that is unproductive, and it leads families to be more optimistic about the future for their ill family member. As anticipated in Hood’s comments, “diagnostic neutrality” also avoids some of the stigma and suggestive power that the idea of having a “damaged brain” seems to impose on the patients in western cases considered in this volume, such as those from the US and UK. Downplaying of diagnostic labels and severity of symptoms, in Sousa’s view, “may guard against exclusion and feelings of worthlessness, which are bad not only for recovery, but for human flourishing in general” (53).

Just as some researchers have suggested that the better outcomes for schizophrenia in developing countries is due to the role of the family in supporting their ill relatives, we see significant family involvement in the cases from India and Ghana, but minimal involvement of family in the US cases, such as in Luhrmann’s depiction of Zaney who struggles to cope with her psychotic symptoms on her own on the streets of Chicago and Myers’ depiction of Meg who lives in shelters and on the streets although her mother lives in the same town. Meg is eventually taken in by her mother when her diagnosis changes from depression to schizoaffective disorder, therefore entitling her to Social Security disability benefits which she is able to use to help pay her mother’s mortgage. Meanwhile, for Alexandra, her home in Romanian “was a place of constant threat and humiliation” (146) supporting studies that claim that (negative) expressed emotion toward the mentally ill in families in the West plays a role in exacerbating illness.

The role of the family however does not seamlessly follow a division between the West and the rest and is not uniformly positive in the Indian context. Sunita, who lives at a the Balaji temple in Rajasthan in northern India and whose experience is depicted in Anubha Sood’s contribution, is seemingly abandoned by family—although we are told that her father originally came to the temple with her and told her she could come home at any time. In addition, Marrow’s depiction of Priyanka shows how the role of the daughter-in-law in her husband’s home can be psychologically damaging due to adverse relations with in-laws. Through Priyanka’s experience, Marrow explains that families in India do not dwell on hallucinations or delusions when describing the problems of their schizophrenia-diagnosed relatives, but show more concern about inappropriate behavior, such as not doing housework or saying inappropriate or offensive things. In a telling moment, Marrow recalls how a hospital staff member was encouraged by seeing Priyanka kneading dough while her mother-in-law cut vegetables in the hospital shortly after Priyanka received ECT. While Priyanka’s relations to her husband and in-laws were problematic during the time Marrow knew her, Priyanka’s in-laws and family were constantly involved in trying to negotiate and improve Priyanka’s behavior and relationships.

While conclusions to edited volumes and anthropological monographs are often unsatisfying, typically claiming that the problem examined is “complex” and requires further study, the conclusion to this volume is quite substantial, following up on the promise made in the introduction to serve as a catalyst for improving the situation. Here Marrow and Luhrmann tie together insights from the various contributions and offer recommendations for improving mental healthcare. This includes “minimiz[ing] diagnosis talk” to avoid labeling, which leads patients to see themselves as broken and incompetent, encouraging family involvement and providing safe and secure housing. Also, given that the WHO studies described in the introduction show a better outcome for schizophrenia in developing country sites and that the nonwestern settings in this volume demonstrated certain advantages in their approaches to coping with psychopathology, Marrow and Luhrmann offer specific “Pragmatic Lessons” people who work with the mentally ill in the West could learn from the cases in this volume. This leads to an endorsement of specific programs and interventions, including the Housing First movement, the Hearing Voices Network and the Open Dialogue approach to working with individuals in conditions of distress. The cases from India, Africa and Thailand seem to attest that care as usual in the US—which Luhrmann argues make an ill person worse—ought to be reconsidered in favor of interventions that target the social situation and how illness experiences are understood by those who are suffering from psychotic symptoms. Hopefully, advocates and clinicians will seriously consider these suggested applications of anthropological insight.

 

Murphy Halliburton is associate professor in the Department of Anthropology at Queens College and the Graduate Center, City University of New York. He specializes in medical anthropology, psychological anthropology and science and technology studies, and has conducted research on treatments for mental illness and recovery from schizophrenia in India.

The ethnographic case: series conclusion by Emily Yates-Doerr

7 Avril 2017 - 10:03pm

Editors note: This entry concludes the series “The Ethnographic Case” which ran every other Monday between June 2015 and July 2016. The bookCase, which holds 27 cases, can be accessed here.

One day, early on in the series, we received two submissions. Their similar anatomy was striking. Each featured a medical waiting room. Someone entered the space with a gift for the clinical personnel, the gift was accepted, and something shifted in the resulting care.

In Aaron Ansell’s case, set within gardens of an informal clinic in Piauí, Brazil, the gift was a small satchel of milk. Rima Praspaliauskiene’s was set in a Lithuanian public hospital and the gift was a rich chocolate cake. Aaron, who works and teaches on legal orders, analyzed the exchange as a challenge to hospital norms of equalitarianism. He helped us to see how the give-and-take of milk interrupts the requirements of a deracinated liberal democracy, offering instead the warm sociality of personal affinity. Rima, who focuses on medical care and valuing, used the object of the cake to query the social scientist’s impulse to explain why people do what they do. She shows us how this impulse may rest upon the linearity and equivalence of rational calculation, uncomfortably treating sociality as a commodity.

The juxtaposition of these submissions is emblematic – a case, if you will – of something we have seen throughout this series: the art of ethnographic writing resides in a relation between what is there and what is done with it.

Beginnings

We might trace the origin of the series to a business meeting at the AAAs, when we offered the idea of “the ethnographic case” for a Somatosphere series.[i] The idea was quickly picked up and moved around by the group. Most everyone had something to add. Medical cases, detective cases, legal cases, psychiatric cases: the similarities and differences between how ethnographers think with and in cases and the use of cases in other fields was intriguing.[ii]

We might also trace the origins to fieldwork. Many of the authors in the series noted, there was something – an interaction, encounter, object, or image – from time in the field that had become haunting. Participation in our bookCase offered a chance to flesh out how messy interactions over many months of fieldwork become condensed into ethnographic moments, where the already understood folds together with that which is yet to be tamed (Strathern 1999).

From the beginning, Christine knew she would write about Judy—a patient she had encountered in her research on vulvar pain. Judy’s presence shaped Christine’s book, although Christine had not yet had a chance to write specifically about their encounter. She titled the case 3 millimeters— a reference to a closure as much as an opening, for Lichen planus, an autoimmune disease that Judy suffered from, had fused her labia to this small size, causing embarrassment and pain. The details of Judy’s story are unique, but taken together they crystallized a problem that Christine had seen in her months at the clinic: people do not know how to talk about genitals, and an inability to verbalize genitalia contributes to their medical neglect. Silence was not a space of nothingness; it was a space where tissue fused and pus accreted as the vulva, an object erased precisely by its hypersexuality, becomes unthinkable, and thereby untreatable, in preventative practices of care. Writing the vulva, speaking the vulva in her case – as with speaking it in the clinic – would help to develop a new linguistic ecology, making vulvas matter in better ways.

Having participated in the previous Somatosphere special series, I didn’t contribute a case myself. But much of my own work and writing centered upon the problems that arose from making cases. A brief discussion of my interest in editing the series is as follows:

I had become suspicious of the practice of case-making while studying the diagnosis of obesity in a hospital in Guatemala. I wasn’t alone. Health workers everywhere around me were frustrated that treating patients as cases did little to assuage chronic illness. They argued that case-based treatment, no matter how personalized, ignored that obesity was an illness of complex systems, built up over generational time. As its causes were not individual, treating patients as if there was anything that they – personally – could do to prevent being sick saddled them with an impossible responsibility that often made things worse.

Following those around me, I was tempted to point to political or economic structures as the source of the problem and a place to direct energy for treatment. But I feared that if I was not careful, a focus on structure would distance me from the vital intervention that I saw possible in ethnographic methods. To offer a quick observation: people routinely follow up concern for structure with numbers, such that to say obesity was a structural problem was to say that a measurable demographic of people is sick or suffering. That problem I saw was that ‘structure’, with these metric-based underpinnings, does not just imply an uncomfortable uniformity of ontology. It also risks mobilizing plans for treating people and experiences and afflictions that are not the same, as if this heterogeneity does not matter. It is from concern for ontological violence – as well as violence that is structural – that I was cautious about constraining anthropologists to the role of illustrating, with our stories, what the economists or epidemiologists already know.

It was as much from curiosity about ethnographic structures as ethnographic cases, that I began to wonder what would happen to obesity if I uncased it, following it outside the clinical setting. Listening to this curiosity, I started tracking obesity across “structural” spaces: kitchens, schools, farms, and metabolic science—although tracking is not quite the right word, for it turned out there was no stable object leaving footprints in the sand. Obesity in kitchens, where women struggled to square their expertise in cooking with dietary counseling that treated them as ignorant, was not the same as obesity in grade schools, where children learned not to eat fattening “junk food” but had only candy and soda available at recess. In farms, where people used toxic pesticides to grow healthy vegetables for far-away consumers worried about their weight, obesity was a matter of chemicals and trade. And in scientific centers, where researchers traveled to the same communities where I traveled and then returned to their urban laboratories with swabs of saliva or vials of blood, it became a problem of ancestral deprivation— yet different again.

The intricacies of the so-called structures I was encountering began to turn my understanding of the relation between the particular and the generality on its head. I was beginning to see the case not as a part of something larger (a unit to be added together with others). Instead, the very practice of adding things together changed the substance under evaluation, such that there was simply no way to add it up. As it was not possible to be holist, the difficult work in front of me lay not in mapping more layers, adding in more units of complexity, but in making cuts. The challenge, then, became the challenge of not cutting in the style of the clinical folder. [iii] This was not a challenge to be solved by making a thin case-file endlessly thicker; indeed, it was not a challenge to be “solved,” but to be kept alive: the stories I wanted to tell had no natural origin or end.

I was drawn to the intrigue of “the ethnographic case,” in part, from conviction gained by living in the mess of anthropological fieldwork that things need not be patterned nor predictable to have efficacy—that particularity was its own form of power. I was also drawn to it because it posed a critical question for a field organized by participant-observation: how does one make an analytic intervention that is situated and still expansive enough to address global violences (an especially troubling question considering that expansion – a colonial practice if there ever was one – so often furthers violence). I wanted, with others, to develop resources capable of showing how “staying with the trouble” (Haraway 2016) need not itself be troubling, but a generative and vital way forward.

And so we wrote an introduction and began to assemble a group of ethnographers to think about how the practice of telling stories shapes knowledge. An important postcolonial critique of anthropology notes that we too-often get our case materials in the peripheries while doing our theory in colonial centers (Oyèrónké Oyěwùmí 1997; Law and Lin 2016). There is a highly gendered dynamic to this division between the particular and the general as well (Behar and Gordon 1996). We began to wonder if a possible way forward might be found in the assertion that the case is the theory. But before making this argument, we thought we’d find out what anthropologists were doing with their cases. ‘What is the ethnographic case?,’ we asked in our opening call for contributions. And then, to be more precise about the question, ‘what can it be made to be?’ 

Design

Every other week, for over a year, our bookcase grew larger by one installation. In fashioning the bookCase, we worked with graphic designers to emphasize texture over pattern. If anthropologists have long sought to make generalities by looking for replications, reproductions, and repetitions of culture, this was a chance to try out something else. If you consider the design we settled upon, the cases are each connected, but they also stand apart. Our cases share a basic shape, but they vary in their thinness or thickness on the screen and are adorned with diverse imagery. The covers were selected by each author to offer a hint at something that would lie within the case, encouraging, from the outset, what Anna Tsing has called an “art of noticing” (2015). In emphasizing specificity over pattern, we wanted to stress a practice of noticing how we notice: what do we keep in the frame of the stories we tell; what do we set aside; what travels between cases and what stays put? The push, from the outset, was to think of ethnography as the study of the techniques by which cultures are made to materialize rather than the study of culture as if such a thing could ever stand by itself (see Landecker 2007, 2016).

Casework

We collected 27 ethnographic cases. If our initial interest lay in the question of what the case can be made to be, we quickly learned that the answer was wide and unsteady: with every entry, ‘the case’ shifted from what it was the week before.

The series began with Annemarie Mol’s case, which recounts the story of a country doctor who injected turpentine into the buttock of a dying farmer to activate his immune system, thereby saving his life. She uses the story to suggest that cases, be they medical or ethnographic, serve to evoke and inspire, generating resources in once place that might be used elsewhere— though there are never guarantees about how these resources will travel.

Anna Harris’ case next addressed the condition of autophony, in which patients cannot screen out sounds that most people do not notice, hearing, for example, their eyeballs moving left to right. She counterposes medical cases, which aim to normalize that which is bizarre, with ethnographic cases, which turn something as mundane as a tapping finger into a point of fascination. She asks about the strangely familiar place of the ethnographer’s body in the generation of our stories: How do we listen in? And when we do, what does it do to our stories of the world when we use our own sensing, moving, living bodies as a case for others?”

Nick Copeland also focuses on an atypical condition: that of facial paralysis accompanying an epidemic of Bell’s Palsy in highland Guatemala. At least medical doctors might call it Bell’s Palsy, and calling it this might stabilize it enough to offer some prescriptive treatments. But whereas clinical understandings and prescriptions of bodily disorder allowed the diagnosis to travel far, he found they also failed to characterize the suffering of people who experienced momentary intensities and systematic violences. He reads the case of paralysis through a pattered failure of human and planetary systems. But if the case hints at something larger, there is also something tellingly nervous about the very possibility of ‘the system.’

Systems thinking forms the basis of Atsuro Morita’s case which takes up the relation between holist and partial systems through a story of sailing along the Noi River in Thailand with a firm of Japanese engineers who are studying Dutch irrigation canals. If this sounds complex, the point is rather that the trip has been carefully arranged. Intricate, yes, but not here wild. Although this binary becomes a point of departure for the essay since the nature they are studying has been designed to be transformed. Through a series of deft ethnographic maneuvers that bring together the field and its representation, Morita illustrates (or to turn from a visual toward action-based language– he does) the fieldsite as an always-experimental space.

Represent-abilities

Questions of representation loomed large throughout the series. While representation may, in some academic corners, still be taken as a reflection of a stable truth, we drew upon numerous cases of political, legal, or activist representation in which representation took a different form. Here representation rather connotes advocating for [an idea, a political position, a group of women, and so on] entailing a stance, an engagement, and an assailable commitment.

What’s in a name?, Ruth Goldstein asks, facing us with the long-neglected representational problem of choosing pseudonyms. One solution might be to work with people to select the names they want to use. But in Goldstein’s research on mining and sex work in the Peruvian Amazon, she found that in some cases it was not safe to use the names people wanted, and in others, the names they wanted were not theirs to give. Eschewing an ethics based in prefigured rules Goldstein takes naming to be an active, negotiated process of labor, fraught with asymmetry. We may work to perfect it – to express ourselves better – but if we are to fashion a goal for ourselves, it might lie in attending to the labor of naming and not to the ideal of coming up with a perfect name.

Teresa Velasquez further explores relations of collaboration with and between anthropological interlocutors to address a situation in which the Ecuadorian anti-mining activists refuse to be represented in her writing. They were worried, Velasquez explains, about extractivism in ethnographic practice and wanted to maintain their own words, even as they were learning how to speak from others. Everyone in this case is in drag, referent indistinguishable from sign—and yet claims to the power of ‘the real’ continue to have efficacy. One ends this essay with a clearer sense than ever of how the powers of spoken word are in awkward (read: productive) relation with the material powers of earth, violence, and gold.

That representation reinforces certain kinds of power is a worry that animates Anna Wilking’s case. She entered fieldwork wanting to make a film that would celebrate the motherhood of Ecuadorian sex workers, whom she knew to be using sex work to be good mothers in many of motherhood’s most romantic terms. But the medium of film, though highly editable, could not be pre-determined, and the story that found Wilking was a story of a good father who filled an absent mother’s place. The case was unusual– it was, as Wilking writes – a misrepresentation of most sex workers who choose sex work to stay active in their lives. And yet, letting go of the sociological mandate that a case must stand in for a majority allowed Wilking to focus on the vulnerable, nurturing masculinities that are surely there but so often left out of stories of sex workers’ lives. She represented the story of fatherhood not because it was broadly representative but because it was a future that deserved to be made visible.

Jenna Grant’s case similarly positions representation as a technique for fixing things, in a double-meaning of the term that implies giving ontological stability to fluid objects— not because there is but one real underlying truth to the form of these objects, but because this can sometimes help to improve (fix) the matters of concern. Lest you worry that this is difficult to grasp, the argument – as with the arguments in each of the 27 cases – is made accessible through fieldwork. The aunt of Puthea, a woman in Phnom Penh, sees a small cat in her prenatal ultrasound image. The image hints at a porousness between humans, images, animals, and machines while also giving biological shape to the being-in-formation. The ethnographer, she makes clear, is part of the mess and the mix:

Exceptional stories fix ethnographers, too. I did not hear about another cat-like scan, yet after talking to Puthea and Ming, I listened more closely for image stories. I asked different questions. I worked to make this story into an exemplary ethnographic case. Can it bear this weight? Perhaps. If representations fix—whether with words, images, or as cases—that fixing is a process, impermanent yet consequential. Fixing the image fixes the fate. Fixing the case shifts what is possible.

Her case ends by shifting what is possible and, indeed, with many of the cases, “the future” is at stake. Yet also apparent in our series is that by writing cases we do not only author other, future, conditions of possibility; in the practice of authoring we make evident “other” conditions that are already t/here.

This point is made clearly in Sameena Mulla’s consideration of different ways prosecutors and defendants depict the skin around the vagina in rape trial testimony. Court outcomes may be swayed by the use of hair scrunchies or timing belts or by the presence of blood or its absence. But regardless of what jurors see and how they see it, there can be violence even when there are no visible wounds. Things can be real (really real) without being apparent— and still the practice of making-evidence through expert intervention must be drawn upon to make them so.

Also taking up the question of laws and borders, Zoe Todd’s case bends established Euro-Western legal statutes to not just recognize – but reciprocate – the implicit Indigenous legal orders “all around.” She draws attention to the micro-sites where human-fish transpecies collaborations are actively resisting and reshaping colonial logics and Inuvialuit territories. Her goal is not simply to raise awareness – produce knowledge – of these sites for Somatosphere’s intellectual community. This is a case that seeks to change the ongoing violences of academic “iterations and interpretations of Indigenous philosophy.”

The essay by Menard and Tizzoni further troubles the role of anthropological knowledge through a comparison between legal and ethnographic case work. Their essay unfolds through the following puzzling situation: A Mapuche defendant is accused of killing his wife. The language of culture is drawn upon for exoneration requires linguistic and cultural sleights of hand that performs the man as insane, and, with this, performs the techniques of anthropology as insane as well. This is a case that questions the very project of ever having a case stand in for – speak for – a totality.

Carole McGranahan’s case also marks the shifting horizons between factual and legal representation. This is the scene she sets: Tashi, a Tibetan man, must prove that he is the father of his children upon moving to Canada as a refugee. A DNA test suggests to Canadian officials that he is not the father, so the anthropologist is called upon to show that kinship – and not genetics – make fatherhood in Tibet. It is clear that this defies Canada’s existing legal parameters of family, which ask that fatherhood fit into a genetic yes or no. What is less clear is how much ethnography can make courts bend; how much can our differences make a difference?

If you’ve been following along, you’ll know not to expect this question to be answered in general terms. In some of the cases, anthropological interventions seek to show the productivity of human difference when it is recognized and materially integrated with clarity and compassion. Faye Ginsburg and Rayna Rapp’s No Judgments narrates events that took place during a day of fieldwork with the autism theater initiative, a group that works to make Broadway theater accessible to people with this disability, along with their families and allies. For these performances, the theater space is modified to account for particular sensory issues involving light and sound, “fidget toys,” safe spaces, and a high tolerance for unruly behavior. Their contribution makes a case for the value of upholding the aspirations, rights, and accommodations of people with disabilities, articulating “life with a difference” as an aspect of human variation too long neglected in anthropology.

Susan Reynolds Whyte’s polygraphic casebook describes a process of collective and transnational authorship to tell stories of unexpectedly living through Uganda’s AIDS epidemic. The many authors involved seek to document the individual and diverse lives of people whose lives were extended by ARVs. In writing ethnography through cases they seek to “capture” readers and not only the lives of the people whose stories they tell. These are representations that aim to grab attention and make an impact.

Meanwhile, Ken MacLeish’s case emphasizes a call to pause over (or perhaps as) a call to action. He focuses on the production of violence through a “non-event” – here, a soldier who might have fired on a harmless vehicle but did not. The tension made material in the account that he re-scribes is that the distribution of agency into an actor network may impede the very sorts of response-abilities that ANT’s critique of the liberal subject sought to encourage.[iv] What emerges is a challenge to both the sovereignty of the individual and the displacement of this sovereignty into the mess of bureaucratic orders. This is a case, as with many of our cases, that raises far more questions than it answers; in doing so, the tactic of relentless questioning emerges as a possible way forward.

Social lives of cases and concepts

That cases have social lives is a truth that emerges from our bookCase. And another truth: it is not simply “the case” for which this is the case, but all concepts that we deploy and study—sociality here, being a case in point. A few decades ago Bruno Latour critiqued “the social” for its celebration of the human (Latour 1992). That argument had its place then and there, but if the sociality that our cases highlight today is human, it is “not only” (de la Cadena, et al. 2015). Anthropologists have long argued that nature is social; complementing this, many of our cases demonstrate that the social, too, is natural—an argument sustained by ethnographic consideration of nature as a swamping, smelly, ugly, active, and unpredictable thing.

Ildikó Zonga Plájás, for example, writes of how life within the Danube Delta Biosphere is infused with fog and rays of light. This swamp-nature, with its incongruous refuse and wonder, produces ways of knowing and living. The weight of the camera she holds accompanies the gravity of the documentary task, giving shape to stories that in turn shape this landscape. This is representation that is after something in the world. In Janelle Lamoreaux’s case of the DeTox Lab in Nanjing, China the synthetic pesticides and pollutants that settle into earth and bodies have been rendered, by both scientists and activists, as “the environment.” Narrative and statistical accounts alike strategically condense nature into the sociality of industrialization so as to make the case that ugly sperm make ugly futures. Accounting for nature in this way, she shows, may not be a general but inspirational project.

Christy Spackman’s case unpacks the chemistry of sociality through discussion of a sweet, licorice-like smell that permeates the lives of residents of downtown Charleston, USA. A spill of 4-methylchycloheanemethanol damaged the region’s water supply. Instruments designed to measure the ghostly toxin could not detect it; and still the contaminant persisted, if unevenly, in people’s sensorial experiences. Spackman describes how nature becomes domesticated in a laboratory while the impurities of domestic activities – cooking, seeing, smelling, tasting – are held at bay. In this case, scientific purification comes with a price, as contingency’s mess would yield better knowledge about the presence of chemicals than do lab technologies. Or perhaps we should consider this as producing a price, since the inequalities in who bears the burden of toxicity sustain inequalities of industrial production.

In Jennifer Carlson’s discussion of energy transition in Germany, “nature” also pertains as much to financial as to biological futures. Her case, set amid a rapidly transitioning solar panel installation project in the city of Dobbe, examines the psychosomatic afterlives of green energy to illustrate the entanglement of ecology with capitalist speculation. Life that was supposed to be made good is instead filled with fiberglass, rust, and plastic ruins; anxiety and stress emerge from the wreckage of now abandoned glasshouses. As does so much else: compassion, friendship, family meals. Consumers (or are they citizens? or mothers? or lovers? or friends?) struggle to make sense of their condition through the categories of social analysis, but even as they do so, life, like weeds, takes shape outside these bounds.

Plastic Boundaries[v]

How do you know a case when you see one? Elizabeth Lewis writes of a single encounter, well before she began extensive fieldwork that would become a “flashpoint” for later analysis of disability care in Texas. At first the encounter seemed to be an outlier. The blind and non-verbal woman, locked in a cage in a Central American institution, was anything but typical. Over time, however, the woman edged ever-closer to the center of Lewis’ analysis. The woman may remain enclosed in a wooden box in a far-away place— and not only. Absent made present; what is locked away, leaking out. This is not an arena where cases lie waiting to be known and seen; it is one where they are done through narrative relations.

“Cases set boundaries; cases draw you in,” note Biggs and Bodinger de Uriarte. They use the constantly mirrored reflections of a Native American casino to make their point. The Casino is a mimetic world, its interiors containing a complicated mix of referents, its exteriors gesturing outward while embracing its own design as part of its sign. So too, might we understand the halls of anthropology to be mimetic. We reveal – but less because there is one possible truth to be known and more because this act of demonstration is part of the performance. A practice of mirrors, whose reflection also changes how we see.

Every other week, we have collectively participated in remaking “the case.” We could not make cases out of nothing – we could not make things that didn’t, matter. And still, the condition of being material in no way suggested that cases could lock in their form. Case by case, to borrow from the Jason Danely’s entry, the case was adjusted and transformed. Stomach tubes are Danely’s entry into this argument. Decisions about whether to use tubes in elderly care homes, fraught with uncertainty by all involved, must be negotiated case-by-case. Cases are specific, unique, grounded in the variable textures of the everyday—what he refers to as a “constellation of contingencies.” Here, however, Danely intervenes to shift the implications of contingency. For if cases are exceptional, that they are exceptional is commonplace. It is this connection that serves as a point through which to begin a conversation. Here, becoming a case facilitated processes of sharing, without aspirations of becoming identical. Differently – and similarly – contingent. Mutuality, without replication.

“Are the truths of the case’s contingency and plasticity ontological truths?” you might wonder. “Let’s try out different answers and see what happens,” we might respond.

Alternatives and Author-ities

Sharing across different sorts of differences turns us toward matters of politics, which is to say, matters of relating. Through the study of earthworms Bertoni asks us to consider what happens to relating if we think not through the mode of argumentation but through metabolic pathways of incorporation, digestion, and excretion. What arises from this exploration is that “the purpose of making a case may not be to be right, but to offer resources that we can use to metabolize and live with the world in alternative ways.”

It is worth pausing to consider his emphasis on living in alternative ways given the suggestions I have made about the plasticity of nature through the cases above. My guess is that most people reading this series have heard recent claims to “alternative facts” made by conservative pundits who reproduce a longstanding tactic of fascist politics by claiming that assumed truths are not what they seem. Some may wonder if this isn’t somehow uncomfortably similar to what we are doing here, with our unstable ontologies and our futures and actualities that are worlded through representational practices. Let me point to a difference.

Alternative facts – war is peace; freedom is slavery – are still rooted in ontological claims upon a one-world world and claims that there is one and only one correct reflection of that world. These so-called facts are not giving up their singular authority—the authority that comes from locking things up. The science of this series meanwhile asks how things come to be bounded and then sets out to understand the effects of binding things one way or another or another yet again. We ask this not because there is just one answer to be known, but because some questions, and some answers, are better than others— better not in general terms but better in specific cases.

Bertoni notes that through ethnographizing earthworms he learned about how they are already engaged in politics otherwise, which gave him ideas for how he might do this as well.

“The living together of worms can serve as a reminder to Euro-American social scientists that there are no guidelines out there on how to live together well. Instead, politics, when understood as living together, calls for makeshift arrangements that are both radical and specific, as well as for experimenting with alternatives. If composting might work through certain standard passages, composting guides never give any final word, but rather suggest some possible alternatives to tinker with. This is a togetherness that is not constrained by the limits of closed systems and of the categories that Euro-Americans commonly use to think about the world. It is instead a togetherness enlarged by the imaginative openings that worms, like anthropology, can offer us.”

If Bertoni’s case has a lesson for Euro-American sciences, we hope that our series might have a lesson for Euro-American politics. We could respond to the fascist claim of alternative facts by saying that, no, ‘facts are facts,’ thereby initiating a fight over whose facts are right. I worry that replacing the myriad truths of ethnography for the truth of truth is, however, a short-sighted tactic that undermines both scientific and political possibilities. In Bertoni’s case the facts of science are facts that are open to, even welcoming of, alternatives (note the multiplicity). Not just anything can be a fact – methods matter – but a precondition of being fact is being an opening rather than a closure. To be science is to be challengeable, not certain. We might wish something similar for politics, creating systems designed to be both contested and recursively transformed.

Rather than cede that our alternatives were misdirected to those who abuse this term, our series has suggested that it becomes especially crucial to stay close to the study of ways in which truth-making proceeds and truth-telling gains power. That something is, is merely a starting point for asking how something is—a starting point, in other words, for thinking about how we are acting and how we might act otherwise. In the face of toxic lies that intend to close down the project of inquiry, the project of engaging alternatives becomes more necessary than ever.

Stephanie Krehbiel’s, case is a good one on which to wrap up. In her entry, case-making facilitated the production of violence. She writes of being transformed into a case, her analytic capacities and professional qualifications stripped from her. This is not an accidental metaphor; producing persons as cases – and cases as woman, as body – can privilege ways of knowing that facilitate abuse—and do so very often in the name of furthering good. The cultivation of intimacy, long taken as a hallmark of anthropological legitimacy, in her site becomes a means for the twisted, suppressed eroticism of power to take hold, subverting what is known in the name of more stable knowledge.

She makes a point about authority and power that has been with us throughout the series. The man she writes about deploys his authority to subvert the power that she holds and does so through terms and ideas that resonate with her own. He speaks to her of examining how knowledge is gained and legitimized; he emphasizes the importance of discerning what is good. But he does this, she shows, to bolster his authority over her. He is not interested in a flourishing of possibilities but of using his truth (in the singular) against her. She realizes that she cannot talk back to him because he will take up and twist her words. Eventually, she begins to ignore him, putting her energies elsewhere. He engages power in the name of finding truth; she finds power, making space for her authorities, by cutting the relation.

We started this series not long after some prominent voices in our field challenged the place of ethnography. Instead of countering this argument directly – giving it more attention by voicing opposition – we’ve instead taken the tactic of celebrating ethnography by doing it well. In 27 installations, we’ve shown ethnography to be vibrant, curious, and committed. But this does not mean that ethnography is always vibrant, curious, and committed. For we’ve also given it space to be none of these: to be focused on mundane details that call into question a need to be vibrant; to ask how curiosity may activate and further the exploitation of capitalism; to consider when we might lessen and not strengthen our commitments.

This, then, is what we’ve learned from the ethnographic case: its authors undertake their writing – they practice their authorities – with care for the situation and/of the story. We can neither ask nor answer the question of what “the case” is in stable terms. We can instead take up the challenging truth that it is not only the objects that we study that have social lives—so do our theories about them, as well. This, then, sets us on a path of caring not only for what is inside our cases. It compels us to also care for what their walls are made of and to ask how these structures can be done differently and moved.

 

Emily Yates-Doerr is Assistant Professor of Anthropology at the University of Amsterdam and a member of Somatosphere’s editorial collaborative. Her book, The Weight of Obesity: Hunger and Global Health in Postwar Guatemala, was published by California Press in 2015.

 

 

Behar, Ruth, and Deborah A. Gordon 1996. Women writing culture. Berkeley: University of California Press.

de la Cadena, Marisol , et al. 2015. Anthropology and STS: Generative interfaces, multiple locations. Hau 5(1):437–475.

Forrester, John 1996. If p, then what? Thinking in cases. History of the Human Sciences 9(3):1-25.

Latour, Bruno 1992. One more turn after the social turn. Notre Dame, Ind.: University of Notre Dame Press.

Law, John, and Wen-yuan Lin. 2016. The Stickiness of Knowing: translation, postcoloniality and STS http://heterogeneities.net/publications/LawLin2016TheStickinessOfKnowing.pdf

Landecker, Hannah. 2006. Culturing Life: how cells became technologies. Harvard University Press.

—- 2007. It is what it eats: chemically defined media and the history of surrounds. Studies in History and Philosophy of Science. Part C. Studies in History and Philosophy of Biological and Biomedical Sciences. 6(57):148-169.

Oyèrónké Oyěwùmí. 1997. The Invention of Women: Making an African Sense of Western Gender Discourses. University of Minnesota Press.

Strathern, Marilyn. 1999. Property, substance, and effect: anthropological essays on persons and things. Athlone Press.

Tsing, Anna Lowenhaupt. 2015.  The mushroom at the end of the world: on the possibility of life in capitalist ruins. Princeton University Press.

 

[i]                 Somatosphere welcomes additional ideas for curated collections. Be in touch with admin@somatosphere.net with ideas or questions.

[ii]                For more on Thinking In Cases see Forrester 1996 as well as a new volume of the same title.

[iii]               For an excellent discussion of practices of cutting, see a wonderful three-part discussion between Marilyn Strathern and Annemarie Mol in Common Knowledge.

[iv]               For rescription see Jeannette Pols’ elaboration of this term, which borrows from the thinking of Hans Harbers.

[v]                For more on the way I am using plasticity here see Emilia Sanabria’s Plastic Bodies. A Somatosphere book forum on Sanabria’s work is forthcoming. Stay tuned!

 

 

 

In the Journals–March 2017, Part II by Julia Kowalski

3 Avril 2017 - 7:00pm

This is Part II of March’s article round-up. You can find part I here.

In addition to the articles below, Theory, Culture and Society features an interview with Michel Foucault from 1983.

New Genetics and Society

Everything and nothing: regulating embryo research in Canada

Alana Cattapan & Dave Snow

This article examines how medical and scientific professionals experience and engage with the governance of embryo research in Canada. Drawing on the history of embryo regulation in Canada and the findings of a survey conducted with lab directors in Canadian fertility clinics, we identify a disjuncture between the rules established by legislation, regulations, and research ethics guidelines and the real-life experiences of professionals in the field. This disjuncture, we argue, is the result of both the absence of implementation mechanisms that would give substance to the governing framework, as well as an inability on the part of medical and scientific professionals to engage in robust self-regulation. Overall, we demonstrate that in an ethically charged and highly technical area of policy-making like embryonic research, clarity about the roles and responsibilities of government and professionals in policy-making and implementation is critical to effective governance.

Not just about “the science”: science education and attitudes to genetically modified foods among women in Australia

Heather J. Bray & Rachel A. Ankeny

Previous studies investigating attitudes to genetically modified (GM) foods suggest a correlation between negative attitudes and low levels of science education, both of which are associated with women. In a qualitative focus group study of Australian women with diverse levels of education, we found attitudes to GM foods were part of a complex process of making “good” food decisions, which included other factors such as locally produced, fresh/natural, healthy and nutritious, and convenient. Women involved in GM crop development and those with health science training differed in how they used evidence to categorize GM foods. Our findings contribute to a deeper understanding of how GM food, and the role of science and technology in food production and consumption more broadly, is understood and discussed amongst diverse “publics” and across different “sciences,” and to research related to deepening public engagement at the intersection of science and values.

Bench, bedside, boardroom: negotiating translational gene therapy

Courtney Addison

This article presents ethnographic material from a London-based group of gene therapists who received the opportunity to trial a device that, its makers claimed, would expedite and improve their cell work. The Vanguard cell processor elicits both enthusiasm and ambivalence from group members, which I seek to understand by examining the group’s current manner of working alongside the device and its purported virtues. I show that cell processing currently involves complex practices of recognition, attention, care, and involvement, which answer to both the liveliness of cells and the experimentality of gene therapy. I read these practices as a well-honed configuration of productive engagements and detachments, which the Vanguard would thoroughly rearticulate. I thus argue that translational gene therapy is a site at which private and academic interests meet, and that translation more generally might be seen as a space where the relational format of science is renegotiated.

 

Science as Culture

Problematisations of Complexity: On the Notion and Production of Diverse Complexities in Healthcare Interventions and Evaluations

Tineke Broer, Roland Bal & 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.

Autistic Heterogeneity: Linking Uncertainties and Indeterminacies

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.

 

Science in Context

Meanings of Waves: Electroencephalography and Society in Mexico City, 1940–1950

Nuria Valverde Pérez

This paper focuses on the uses of electroencephalograms (EEGs) in Mexico during their introductory decade from 1940 to 1950. Following Borck (2006), I argue that EEGs adapted to fit local circumstances and that this adjustment led to the consolidation of different ways of making science and the emergence of new objects of study and social types. I also maintain that the way EEGs were introduced into the institutional networks of Mexico entangled them in discussions about the objective and juridical definitions of social groups, thereby preempting concerns about their technical and epistemic limitations. This ultimately enabled the use of EEGs as normative machines and dispositifs. To this end, the paper follows the arrival of EEGs and the creation of institutional networks then analyzes the extent to which the styles of thinking behind the uses of EEGs and attempts to reify a notion of normal electrical brain behavior—particularly by applying EEGs to a community of Otomí Indians—correlated with the difficulties of defining the socio-anthropological notions that articulated legal and disciplinary projects of the time. Finally, it unveils the shortcomings of alternative attempts to define a brain model and to resist the production of ontological determinations.

 

Science, Technology, & Human Values

How Does One “Open” Science? Questions of Value in Biological Research

Nadine Levin and Sabina Leonelli

Open Science policies encourage researchers to disclose a wide range of outputs from their work, thus codifying openness as a specific set of research practices and guidelines that can be interpreted and applied consistently across disciplines and geographical settings. In this paper, we argue that this “one-size-fits-all” view of openness sidesteps key questions about the forms, implications, and goals of openness for research practice. We propose instead to interpret openness as a dynamic and highly situated mode of valuing the research process and its outputs, which encompasses economic as well as scientific, cultural, political, ethical, and social considerations. This interpretation creates a critical space for moving beyond the economic definitions of value embedded in the contemporary biosciences landscape and Open Science policies, and examining the diversity of interests and commitments that affect research practices in the life sciences. To illustrate these claims, we use three case studies that highlight the challenges surrounding decisions about how––and how best––to make things open. These cases, drawn from ethnographic engagement with Open Science debates and semistructured interviews carried out with UK-based biologists and bioinformaticians between 2013 and 2014, show how the enactment of openness reveals judgments about what constitutes a legitimate intellectual contribution, for whom, and with what implications.

Social Science and Medicine

Trade liberalization and social determinants of health: A state of the literature review

Courtney McNamara

The health impacts of trade liberalization are often described in relation to access to medicines, changing dietary patterns, tobacco use and alcohol consumption. The impacts of trade liberalization on the social determinants of health (SDH), are by contrast, less well known. Missing is an account of how liberalizing processes identified across different research areas relate to each other and how the association between trade liberalization and health is conceptualized within each of them, especially with reference to SDH. This paper presents a systematic review which provides a more complete picture of the pathways between trade liberalization and health, with special attention to SDH pathways. This picture captures the interrelationships between different areas of investigation, along with current limitations of our understanding and recommendations for future research.

The mental health of Indigenous peoples in Canada: A critical review of research

Sarah E. Nelson and Kathi Wilson

Many scholars assert that Indigenous peoples across the globe suffer a disproportionate burden of mental illness. Research indicates that colonialism and its associated processes are important determinants of Indigenous peoples’ health internationally. In Canada, despite an abundance of health research documenting inequalities in morbidity and mortality rates for Indigenous peoples, relatively little research has focused on mental health. This paper provides a critical scoping review of the literature related to Indigenous mental health in Canada. We searched eleven databases and two Indigenous health-focused journals for research related to mental health, Indigenous peoples, and Canada, for the years 2006–2016. Over two hundred papers are included in the review and coded according to research theme, population group, and geography. Results demonstrate that the literature is overwhelmingly concerned with issues related to colonialism in mental health services and the prevalence and causes of mental illness among Indigenous peoples in Canada, but with several significant gaps. Mental health research related to Indigenous peoples in Canada overemphasizes suicide and problematic substance use; a more critical use of the concepts of colonialism and historical trauma is advised; and several population groups are underrepresented in research, including Métis peoples and urban or off-reserve Indigenous peoples. The findings are useful in an international context by providing a starting point for discussions, dialogue, and further study regarding mental health research for Indigenous peoples around the world.

Assessment of acculturation in minority health research

Molly Fox, Zaneta Thayer, and Pathik D. Wadhwa

Acculturation represents an important construct in the context of health disparities. Although several studies have reported relationships between various aspects of acculturation and health in minority populations, crucial inconsistencies remain. One likely reason for these inconsistencies may relate to limitations in the conceptualization and operationalization of acculturation, particularly in the context of health research. The acculturation construct underwent major conceptual and operational change when it was adapted from anthropology to psychology, and we argue another major shift is now required for use of this construct in health research. Issues include determining whether acculturation measures should focus on an individual’s internal attitudes or overt behaviors; whether they should characterize cultural orientation status at a given point in time or change over time; whether measures should be culture-specific or more global in nature; how the issue of multiculturalism should be addressed; how measures can optimally incorporate multiple dimensions of acculturation; and whether proxy measures should be used. These issues are important in the context of health research because of their implications for determining the direct and indirect effects of cultural change on health-related biological and behavioral processes. We elaborate on and address each of these issues from a perspective that spans multiple disciplines across the biological and social sciences, and offer concrete recommendations with the ultimate goal of achieving a better understanding of the role of acculturation in minority health and health disparities.

Guilt without fault: A qualitative study into the ethics of forgiveness after traumatic childbirth

Katja Schrøder, Karen la Cour, Jan Stener Jørgensen, Ronald F. Lamont, and Niels Christian Hvidt

When a life is lost or severely impaired during childbirth, the midwife and obstetrician involved may experience feelings of guilt in the aftermath. Through three empirical cases, the paper examines the sense of guilt in the context of the current patient safety culture in healthcare where a blame-free approach is promoted in the aftermath of adverse events. The purpose is to illustrate how healthcare professionals may experience guilt without being at fault after adverse events, and Gamlund’s theory on forgiveness without blame is used as the theoretical framework for this analysis. Philosophical insight has proven to be a useful resource in dealing with psychological issues of guilt and Gamlund’s view on error and forgiveness elucidates an interesting dilemma in the field of traumatic events and medical harm in healthcare, where healthcare professionals experience that well-intended actions may cause injury, harm or even death to their patients. Failing to recognise and acknowledge guilt or guilty feelings may preclude self-forgiveness, which could have a negative impact on the recovery of midwives and obstetricians after adverse events. Developing and improving support systems for healthcare professionals is a multi-factorial task, and the authors suggest that the narrow focus on medico-legal and patient safety perspectives is complemented with moral philosophical perspectives to promote non-judgemental recognition and acknowledgement of guilt and of the fallible nature of medicine.

Conceptualisation of the ‘good’ self-manager: A qualitative investigation of stakeholder views on the self-management of long-term health conditions

J. Ellis, E. Boger, S. Latter, A. Kennedy, F. Jones, C. Foster, and S. Demain

Healthcare policy in developed countries has, in recent years, promoted self-management among people with long-term conditions. Such policies are underpinned by neoliberal philosophy, as seen in the promotion of greater individual responsibility for health through increased support for self-management. Yet still little is known about how self-management is understood by commissioners of healthcare services, healthcare professionals, people with long-term conditions and family care-givers. The evidence presented here is drawn from a two-year study, which investigated how self-management is conceptualised by these stakeholder groups. Conducted in the UK between 2013 and 2015, this study focused on three exemplar long-term conditions, stroke, diabetes and colorectal cancer, to explore the issue. Semi-structured interviews and focus groups were carried out with 174 participants (97 patients, 35 family care-givers, 20 healthcare professionals and 22 commissioners). The data is used to demonstrate how self-management is framed in terms of what it means to be a ‘good’ self-manager. The ‘good’ self-manager is an individual who is remoralised; thus taking responsibility for their health; is knowledgeable and uses this to manage risks; and, is ‘active’ in using information to make informed decisions regarding health and social wellbeing. This paper examines the conceptualisation of the ‘good’ self-manager. It demonstrates how the remoralised, knowledgeable and active elements are inextricably linked, that is, how action is knowledge applied and how morality underlies all action of the ‘good’ self-manager. Through unpicking the ‘good’ self-manager the problems of neoliberalism are also revealed and addressed here.

The productive techniques and constitutive effects of ‘evidence-based policy’ and ‘consumer participation’ discourses in health policy processes

K. Lancaster, K. Seear, C. Treloar, and A. Ritter

For over twenty years there have been calls for greater ‘consumer’ participation in health decision-making. While it is recognised by governments and other stakeholders that ‘consumer’ participation is desirable, barriers to meaningful involvement nonetheless remain. It has been suggested that the reifying of ‘evidence-based policy’ may be limiting opportunities for participation, through the way this discourse legitimates particular voices to the exclusion of others. Others have suggested that assumptions underpinning the very notion of the ‘affected community’ or ‘consumers’ as fixed and bounded ‘policy publics’ need to be problematised. In this paper, drawing on interviews (n = 41) with individuals closely involved in Australian drug policy discussions, we critically interrogate the productive techniques and constitutive effects of ‘evidence-based policy’ and ‘consumer participation’ discourses in the context of drug policy processes. To inform our analysis, we draw on and combine a number of critical perspectives including Foucault’s concept of subjugated knowledges, the work of feminist theorists, as well as recent work regarding conceptualisations of emergent policy publics. First, we explore how the subject position of ‘consumer’ might be seen as enacted in the material-discursive practices of ‘evidence-based policy’ and ‘consumer participation’ in drug policy processes. Secondly, we consider the centralising power-effects of the dominant ‘evidence-based policy’ paradigm, and how resistance may be thought about in this context. We suggest that such interrogation has potential to recast the call for ‘consumer’ participation in health policy decision-making and drug policy processes.

From wanting to willing – controlled drug use as a treatment goal

Margaretha Järvinen

This paper uses rational choice theory to analyse a new – and controversial – treatment approach to drug problems: services aimed at making clients capable of controlled use of illegal drugs. The paper highlights three mechanisms used in control-focused treatment: attempts to move drug use from the sphere of “wanting” to the sphere of “willing”; temporal framing of illegal drug use; and a therapeutic focus on clients’ resources rather than their problems. Furthermore, the paper identifies some of the main challenges associated with this kind of treatment. The paper is based on 30 qualitative interviews with young people (aged 18–25) enrolled in drug treatment in Copenhagen, Denmark.

Health in the Tenderloin: A resident-guided study of substance use, treatment, and housing

Jamie Suki Chang

Substance use researchers recognize that environments – our homes, streets, communities, and neighborhoods – set the stage for substance use and treatment experiences by framing interactions, health options, and decision-making. The role of environment is particularly salient in places deemed disadvantaged or risky, such as parts of the Tenderloin neighborhood of San Francisco. Since risk is historically, socially, and structurally situated, an individual’s social position in a neighborhood shapes how risk environments are experienced. The purpose of this study was to explore how the environment shapes substance use and treatment experiences, described from the perspective of Tenderloin residents. I conducted docent method interviews with formerly homeless women living in supportive housing in San Francisco (N = 20). The docent method is a three-stage, participant-led, audiotaped, and photographed walking interview. As they guided me through target “sites of interest” (homes, streets, treatment programs, and safe spaces), participants discussed their experiences with substance use and treatment in the environment. First, they described that the risks of a broader drug market are concentrated in the Tenderloin, exposing residents to elevated and disproportionate risk. Second, for structural, economic, social, and physical reasons, participants described a sense of geographic or neighborhood stratification. Third, multiple levels of policing and surveillance were persistent, even in participants’ homes. Fourth, despite all the challenges, participants found security and support in the Tenderloin, and considered it their home. In the discussion, I offer that the Tenderloin environment provided residents many advantages, but forms of structural and everyday violence largely defined their experiences in the neighborhood.

Identity in a medicine cabinet: Discursive positions of Andean migrants towards their use of herbal remedies in the United Kingdom

Melissa Ceuterick and Ina Vandebroek

This study explores different rationales for using herbal remedies among people from Andean descent in the United Kingdom, using positioning theory as a conceptual framework. By analysing processes of positioning in narratives about healthcare choices conducted with 40 Bolivian and Peruvian migrants in London (between 2005 and 2009), we examine in which ways talking about personal preferences for herbal medicine can be constitutive of one’s health identity. The results reveal three distinct discursive repertoires that frame the use of herbal remedies either as a tradition, a health-conscious consumer choice, or as a coping strategy, each allowing specific health identity outcomes. An enhanced understanding of how people make sense of their use of traditional, plant-based medicines enables healthcare professionals to better assist patients in making meaningful decisions about their health. Through illustrating how treatment choices are discursively linked with identity, the present results debunk the tendency to perceive patients with a migration background as one homogenous group and thus urge for a patient centred approach.

Finger Pricks and Blood Vials: How doctors medicalize ‘cultural’ solutions to demedicalize the ‘broken’ hymen in the Netherlands

Sherria Ayuandini

This paper provides new perspectives on the scholarship on medicalization and demedicalization, building on an ethnography of hymenoplasty consultations in the Netherlands. By examining how doctors can play an active role in demedicalization, this paper presents novel insights into Dutch physicians’ attempt to demedicalize the “broken” hymen. In their consultations, Dutch doctors persuade hymenoplasty patients to abandon the assumed medical definition of the “broken” hymen and offer nonmedical solutions to patients’ problems. Drawing from unique ethnographical access from 2012 to 2015 to 70 hymenoplasty consultations in the Netherlands, this paper’s original contribution comes from closely examining how demedicalization can be achieved through the process of medicalization. It investigates how Dutch physicians go even further in their efforts to demedicalize by medicalizing “cultural” solutions as an alternative course of action to surgery.

The “Western disease”: Autism and Somali parents’ embodied health movements

Claire Laurier Decoteau

There is some statistical evidence indicating that Somali refugees and immigrants have high rates of autism spectrum disorder (ASD). Somalis in North America call autism the “Western disease” because there is no word for autism in the Somali language and because many believe it does not exist in Somalia. In Toronto, Somali parents have forged an “epistemic community,” united around a coherent theory of the development of autism, its defining features, and most successful therapies. They work together with researchers to support the theory that gut bacteria is a causal factor for the development of autism. They argue that it is the diet and medical environment in North America (including the use of preservatives, genetically-modified processing, and antibiotics in both health care and food production) that explains the high rates of autism within the Somali diaspora. The paper argues that race and nationality have been underexplored in theories of embodied health movements. I argue that Somali parents’ organizing pushes theories of health social movements in new directions, by suggesting that experiences of forced migration and racial exclusion, as well as non-Western cultural ontologies of health, are important for understanding embodied experiences of illness and the forging of “politicized collective illness identities” that challenge mainstream scientific understandings of autism. As such, Somalis’ race and nationality play key roles in their pathways to group construction, in their embodied experiences of illness, and in their resources for mobilization.

Personal and political histories in the designing of health reform policy in BoliviaAlissa Bernstein

While health policies are a major focus in disciplines such as public health and public policy, there is a dearth of work on the histories, social contexts, and personalities behind the development of these policies. This article takes an anthropological approach to the study of a health policy’s origins, based on ethnographic research conducted in Bolivia between 2010 and 2012. Bolivia began a process of health care reform in 2006, following the election of Evo Morales Ayma, the country’s first indigenous president, and leader of the Movement Toward Socialism (Movimiento al Socialism). Brought into power through the momentum of indigenous social movements, the MAS government platform addressed racism, colonialism, and human rights in a number of major reforms, with a focus on cultural identity and indigeneity. One of the MAS’s projects was the design of a new national health policy in 2008 called The Family Community Intercultural Health Policy (Salud Familiar Comunitaria Intercultural). This policy aimed to address major health inequities through primary care in a country that is over 60% indigenous. Methods used were interviews with Bolivian policymakers and other stakeholders, participant observation at health policy conferences and in rural community health programs that served as models for aspects of the policy, and document analysis to identify core premises and ideological areas. I argue that health policies are historical both in their relationship to national contexts and events on a timeline, but also because of the ways they intertwine with participants’ personal histories, theoretical frameworks, and reflections on national historical events. By studying the Bolivian policymaking process, and particularly those who helped design the policy, it is possible to understand how and why particular progressive ideas were able to translate into policy. More broadly, this work also suggests how a uniquely anthropological approach to the study of health policy can contribute to other disciplines that focus on policy analysis and policy processes.

Sociology of Health and Illness

‘Sometimes, it’s easier to write the prescription’: physician and patient accounts of the reluctant medicalisation of sleeplessness

Maired Eastin Moloney

The medicalisation of sleep is a rich and growing area of sociological interest. Previous research suggests that medicalisation is occurring within the context of physician office visits, but the inner workings remain unclear. This study is the first to provide perspectives on the office visit interaction from both sleepless patients (n = 27) and the physicians (n = 8) who treat them. Analyses of semi-structured qualitative interviews reveal that sleep-related conversations are typically patient-initiated in routine office visits. Physicians and patients conceptualised insomnia as a symptom of another issue (depression), an everyday problem of living (stress) or the result of a natural life process (aging). Lack of sleep was not necessarily linked to daytime impairment. Even though sleep aids were routinely requested and prescribed, patients and physicians consistently expressed attitudes of reluctance toward the use of sedative hypnotics. I call this a case of ‘reluctant medicalisation’ and highlight the liminal space between pathology and normalcy inhabited by patients and physicians. I also build on recent work acknowledging the dynamics between macro and micro levels of medicalisation and illustrate the influence of multilevel ‘engines’ (consumerism, biotechnology, managed care and physicians) in patients’ and physicians’ accounts.

The articulation of neoliberalism: narratives of experience of chronic illness management in Bulgaria and the UK

Ivaylo Vassilev, Anne Rogers, Elka Todorova, Anne Kennedy, and Poli Roukova

The shift from social democratic to a neoliberal consensus in modern welfare capitalist states is characterised by an emphasis on individual responsibility, consumer choice, market rationality and growing social inequalities. There has been little exploration of how neoliberalism has shaped the environment within which chronic illness is experienced and managed. This article explores the different articulations of neoliberalism manifest in the arena of personal illness management in Bulgaria and the UK. People with type 2 diabetes discussed their experiences in terms of struggling with diet, diabetes as a personal failure, integrating illness management and valued activities, and the trustworthiness of the healthcare system. The UK narratives were framed within an individual responsibility discourse while in Bulgaria lack of resources dominated discussions, which were framed as structurally generated and unrelated to individual capabilities and choices. Respondents faced personal management challenges related to consumer and healthcare market failures in both countries. Differences in market regulation and emerging stakeholder and interest coalitions influenced users’ expectations and their navigation and adaption to market failures in managing their everyday illnesses. The UK and Bulgarian articulations of neoliberalism can be described differently: the first as a logic of managed choice and the second as a logic of unmanaged consumerism.

Nurses and electronic health records in a Canadian hospital: examining the social organisation and programmed use of digitised nursing knowledge

Marie L. Campbell and Janet M. Rankin

Institutional ethnography (IE) is used to examine transformations in a professional nurse’s work associated with her engagement with a hospital’s electronic health record (EHR) which is being updated to integrate professional caregiving and produce more efficient and effective health care. We review in the technical and scholarly literature the practices and promises of information technology and, especially of its applications in health care, finding useful the more critical and analytic perspectives. Among the latter, scholarship on the activities of economising is important to our inquiry into the actual activities that transform ‘things’ (in our case, nursing knowledge and action) into calculable information for objective and financially relevant decision-making. Beginning with an excerpt of observational data, we explicate observed nurse-patient interactions, discovering in them traces of institutional ruling relations that the nurse’s activation of the EHR carries into the nursing setting. The EHR, we argue, materialises and generalises the ruling relations across institutionally located caregivers; its authorised information stabilises their knowing and acting, shaping health care towards a calculated effective and efficient form. Participating in the EHR’s ruling practices, nurses adopt its ruling standpoint; a transformation that we conclude needs more careful analysis and debate.

Unmasking the enterprising nurse: migrant care workers and the discursive mobilisation of productive professionals

Antero Olakivi

Public care work organisations in Northern Europe often seek to increase their economic efficiency in ways that care workers criticise for reducing both their professional autonomy and the quality of care. Recently, the ideal of ‘enterprising nursing’ has emerged as a political belief according to which economic efficiency, care workers’ autonomy and the quality of care can be improved in tandem by cultivating care workers’ agential abilities. This article examines the reception of this belief among migrant care workers in Finland. Drawing on research interviews, the analysis demonstrates how migrant care workers may have difficulties in aligning themselves with the enterprising ideals but also in protesting them. Ethnicity, and the status of a migrant, can offer resources for both constructing enterprising subjectivities and reframing care workers’ agency, and their organisational environment, in more critical terms.

Enabling and controlling parenthood in publicly provided maternity healthcare: becoming a parent in Finland

Riikka Homanen

This article discusses practices of parental support in the maternity healthcare provided by the welfare state. Drawing on ethnographic material from clinics in Finland, I discuss maternity healthcare practices and processes as the specific contexts of subjectification to parenthood in the Nordic welfare state. The analysis shows that in both nurses’ (work) experience-based knowledge and population-statistical knowledge, parental competence is achieved largely through the ‘natural’ process of experiencing pregnant life. Care practices can be seen as enabling parenthood through respect for this process. Clinics encourage parents-to-be to self-reflect and be self-reliant. Emphasis on self-reflection and self-reliance has previously been interpreted as the state adoption of therapy culture, and as a response to market demands for the welfare state to offer to and require of its citizens more autonomy and choice. I argue, however, that the parental subject emerging from the practices of this welfare service cannot be reduced to a neoliberal reflexive individual for whom parenthood is an individual project and who is to blame for individual shortcomings. Equally, they are no mere disciplined product of governmentality being pushed to conform to an idealised parent figure derived from collective ideas of good parenthood.

Between stigma and pink positivity: women’s perceptions of social interactions during and after breast cancer treatment

Diane Trusson and Alison Pilnick

This study explores women’s perceptions of social interaction during and after their treatment for early stage breast cancer. An analysis of interviews with 24 women between 6 months and 29 years post-diagnosis reveals that interactions can be influenced by conflicting public discourses surrounding breast cancer. For example, there is the continuing association of cancer with death and the resulting potential for a stigmatised identity. In contrast is the ultra-positive discourse around cancer survivorship, with breast cancer in particular being associated with pink campaigning and a push towards positive thinking. Participants described managing conversations during treatment; sometimes playing down their private suffering and presenting a positive (public) image rather than risk alienating support. After treatment they were encouraged to move on and get back to ‘normal’. While other breast cancer patients and survivors were often good sources of support, there was also a danger of assuming that all experiences would be the same. We present data to illustrate that women often present public accounts that are driven by an expectation of positivity and fear of stigmatisation at all stages of breast cancer treatment and beyond.

Changing tastes: learning hunger and fullness after gastric bypass surgery

Line Hillersdal, Bodil J. Christensen, and Lotte Holm

Gastric bypass surgery is a specific medical technology that alters the body in ways that force patients to fundamentally change their eating habits. When patients enrol for surgery, they enter a learning process, encountering new and at times contested ways of sensing their bodies, tasting, and experiencing hunger and fullness. In this paper, we explore how patients begin to eat again after gastric bypass surgery. The empirical data used here are drawn from a Danish fieldwork study of individuals undergoing obesity surgery. The material presented shows how the patients used instructions on how to eat. We explore the ways in which diverse new experiences and practices of hunger and fullness are part of the process of undergoing surgery for severe obesity. New sensory experiences lead to uncertainty; as a result, patients practice what we term mimetic eating, which reflects a ‘sensory displacement’ and hence a rupture in the person’s sense of self and social relations. We suggest that eating should be conceptualised as a practice that extends beyond the boundaries of our bodies and into diverse realms of relations and practices, and that changing the way we eat also changes the fundamentally embodied experience of who we are.

Theory, Culture and Society

Biopolitics, Thanatopolitics and the Right to Life

Muhammad Ali Nasir

This article focuses on the interrelationship of law and life in human rights. It does this in order to theorize the normative status of contemporary biopower. To do this, the case law of Article 2 on the right to life of the European Convention on Human Rights is analysed. It argues that the juridical interpretation and application of the right to life produces a differentiated governmental management of life. It is established that: 1) Article 2 orients governmental techniques to lives in order to ensure that both deprivation and protection of lives is lawful; 2) A proper application of Article 2 grounds itself on a proper discrimination of lives which causes Article 2 to be applied universally but not uniformly to all juridical subjects; 3) The jurisprudence of Article 2 is theoretically appreciable only in a ‘politics of life’. Finally, the article ends with a plea to analyse other fundamental human rights in the context of ‘biopolitical governmentality’.

Anthropology and Medicine

mHealth and the management of chronic conditions in rural areas: a note of caution from southern India

Papreen Nahar, Nanda Kishore Kannuri, Sitamma Mikkilineni, G.V.S. Murthy and Peter Phillimore

This article examines challenges facing implementation of likely mHealth programmes in rural India. Based on fieldwork in Andhra Pradesh in 2014, and taking as exemplars two chronic medical ‘conditions’ – type 2 diabetes and depression – we look at ways in which people in one rural area currently access medical treatment; we also explore how adults there currently use mobile phones in daily life, to gauge the realistic likelihood of uptake for possible mHealth initiatives. We identify the very different pathways to care for these two medical conditions, and we highlight the importance to the rural population of healthcare outside the formal health system provided by those known as registered medical practitioners (RMP), who despite their title are neither registered nor trained. We also show how limited is the use currently made of very basic mobile phones by the majority of the older adult population in this rural context. Not only may this inhibit mHealth potential in the near future; just as importantly, our data suggest how difficult it may be to identify a clinical partner for patients or their carers for any mHealth application designed to assist the management of chronic ill-health in rural India. Finally, we examine how the promotion of patient ‘self-management’ may not be as readily translated to a country like India as proponents of mHealth might assume.

Herbal medicines for diabetes control among Indian and Pakistani migrants with diabetes

Tania Porqueddu

Drawing on data collected during a 16-month ethnographic investigation, this paper explores practices around Indians’ and Pakistanis’ use of herbal medications for diabetes control. The ethnographic study was conducted among Indian and Pakistani migrants in Edinburgh, Scotland and included extended participant observation, six group discussions and 21 semi-structured interviews. Respondents showed great resistance in adhering to medication prescriptions for diabetes control due to their various side effects, especially within the stomach. In order to avoid such side effects, respondents decreased medication dosage and turned to non-allopathic remedies that usually consisted of herbal medications that, according to Indians and Pakistanis, did not cause side effects as medications did and tackled the cause of the disease rather than its symptoms. Such remedies however, were not only combined with allopathic ones but also eventually replaced without the doctor’s consultation.

Trail Blazing or Jam Session? Towards a New Concept of Clinical Decision-making

Torsten Risør

Clinical decision-making (CDM) is key in learning to be a doctor as the defining activity in their clinical work. CDM is often portrayed in the literature as similar to ‘trail blazing’; the doctor as the core agent, clearing away obstacles on the path towards diagnosis and treatment. However, in a fieldwork of young doctors in Denmark, it was difficult connect their practice to this image. This paper presents the exploration of this discrepancy in the heart of medical practice and how an alternative image emerged; that of a ‘jam session’. The exploration is represented as a case-based hypothesis-testing: first, a theoretically and empirically informed hypothesis (H0) of how doctors perform CDM is developed. In H0, CDM is a stepwise process of reasoning about clinical data, often influenced by outside contextual factors. Then, H0 is tested against a case from ethnographic fieldwork with doctors going through internship. Although the case is chosen for characteristics that make it ‘most likely’ to verify the hypothesis, verification proves difficult. The case challenges preconceptions in CDM literature about chronology, context, objectivity, cognition, agency, and practice. The young doctor is found not to make decisions, but rather to participate in CDM; an activity akin to the dynamics found in a jam session. Their participation circles in and through four concurrent interrelated constructions that suggest a new conceptualization of CDM; a starting point for a deeper understanding of actual practice in a changing clinical environment.

Adherence and Recursive Perception Among Young Adults with Cystic Fibrosis

August Oddleifson and Gregory S. Sawicki

Adherence to prescribed treatment is a pressing issue for adolescents and young adults with cystic fibrosis (CF). This paper presents two narratives from the thematic analysis of unstructured interviews with 14 adolescents, young adults, and older adults living with CF. Through a new identity-based framework termed recursive perception that draws focus on how an individual perceives how others view them, it explores the social context of adherence and self-care among young adults with CF. It demonstrates that an individual’s understanding of self and desire to maintain a certain image for peers can be deeply embedded in adherence and self-care patterns, leading individuals to feel they need to choose between tending to their health needs and living their lives. This suggests that current biomedical innovation in CF care must be complemented with renewed efforts to find effective means to empower young adults with CF to successfully navigate the social challenges of their illness and avoid the pitfalls of nonadherence that can lead to a permanent worsening of their health condition.

Unsettling the fistula narrative: cultural pathology, biomedical redemption, and inequities of health access in Niger and Ethiopia

Alison Heller and Anita Hannig

Obstetric fistula, a maternal childbirth injury that results in chronic incontinence, affects an estimated one million women in the global south. In the course of media and donor coverage on this condition, fistula sufferers have been branded as ‘child brides’ who, following the onset of their incontinence, become social pariahs and eventually find physical and social redemption through surgical repair. This narrative framing pits the violence of ‘culture’ against the potency of biomedical salvation. Based on over two years of ethnographic research at fistula repair centres in Niger and Ethiopia, this paper challenges this narrative and argues that most women with obstetric fistula remain embedded in social relations, receive continued familial support, and, unexpectedly, experience ambiguous surgical outcomes. This paper interrogates the existing logics of the fistula narrative that have had the unintended effects of obscuring global structural inequalities and diverting attention away from systemic health access reforms.

Not ‘Taking the Easy Way Out’: Reframing Bariatric Surgery from Low-effort Weight Loss to Hard Work

Sarah Trainer, Alexandra Brewis and Amber Wutich

Cultural notions equating greater morality and virtue with hard work and productive output are deeply embedded in American value systems. This is exemplified in how people understand and execute personal body projects, including efforts to become slim. Bariatric surgery is commonly viewed as a ‘low-effort’ means of losing weight, and individuals who opt for this surgery are often perceived to be ‘cheating.’ This extended ethnographic study within one bariatric program in the Southwestern United States shows how patients conscientiously perform this productivity. By prioritizing discourses that focus on their own hard work and the inherent value and necessity of their surgery, patients and practitioners alike contest the dominant public views of surgically-induced weight loss.

Guardians of ‘the gift’: the emotional challenges of heart and lung transplant professionals in Denmark

Anja M. B. Jensen

This paper deals with the emotional challenges encountered by doctors and nurses caring for heart and lung transplant patients. Organ transplantation enables body parts from the dead to become usable in patients with no other life-saving option. These exchanges are not possible without transplant professionals carefully selecting, guiding and interacting with organ recipients before, during and after the transplant. Based on anthropological fieldwork at a Danish heart and lung transplant unit, the paper explores how doctors and nurses experience and handle the emotional challenges of their working life. By focusing on the everyday life of the transplant unit which, contrary to public understanding of transplant miracles, is sometimes characterised by sad cases and devastation, this paper argues that transplant professionals operate in the presence of death. Medically and emotionally they are at risk. They must take the difficult decisions of whether to admit critically ill patients onto the organ waiting list; face the distress of post-transplant sufferings and deaths; and deal with organ recipients who do not behave according to post-transplant recommendations. Drawing on a familiar metaphor for donated organs, it is suggested that transplant doctors and nurses are ‘guardians of the gift’. Attention to the emotional burdens and rewards of this particular position enables new understandings of the practices of transplant medicine, of gift exchange theory, and of the role of emotion in medical practice.

Health, Risk and Society

Pregnancy and birth in the global South: a review of critical approaches to sociocultural risk illustrated with fieldwork data from northern Uganda

Sarah Rudrum

In this article, I examine whether a critical approach to risk is relevant to pregnancy and maternity care in global South settings and I illustrate my review of current literature with examples from fieldwork I conducted in northern Uganda in 2012. Coxon, in a Health, Risk & Society editorial entitled ‘Risk in pregnancy and birth: are we talking to ourselves?’ (2014, Health, Risk & Society, 16(6), 481–493), noted that the analysis of risk in pregnancy has tended to focus on ‘relatively privileged women in high-income countries’ (p. 490), a narrow lens that in her view not only led to an account that was ‘highly partial’ but also contributed to theory in this area being overly focused on individual accounts, rather than structural inequalities. In this article, I draw on my experiences researching and writing about maternity care in Uganda, to consider whether and how a critical approach to sociocultural risk is relevant in low-income global South countries, as well as how a shift in lens to include less privileged women in low-income countries also shifts the theoretical contribution of a critical risk approach. I examine screening and surveillance as well as risk subjectivity, areas central to the discussion of risk and pregnancy, and find that a critical approach to risk offers insight into new forms of control and new discourses of responsibility. At the same time, I note that the social, political and medical contexts shaping both clinical and critical sociocultural approaches to risk have not occurred universally, and the critiques developed by scholars in and of the global North are not directly transferable to global South settings. Overall, I find that a critical approach to risk is indeed relevant and points to specific cases and discourses where such a lens is particularly valuable.

‘Because I’ve been extremely careful’: HIV seroconversion, responsibility, citizenship and the neo-liberal drug-using subject

Andrea Krüsi, Ryan McNeil, David Moore and Will Small

In this article, we examine how injection drug users who do not attribute their HIV infection to engaging in HIV risk behaviours take up and critique discourses of individual responsibility and citizenship relating to HIV risk and HIV prevention. We draw on data from a study in Vancouver, Canada (2006–2009) in which we interviewed individuals living with HIV who had a history of injection drug use. In this paper, we focus on six cases studies of participants who did not attribute their HIV infection to engaging in HIV risk behaviours. We found that in striving to present themselves as responsible HIV citizens who did not engage in HIV risk behaviours, these participants drew on individually focused HIV prevention discourses. By identifying themselves in these ways, they were able to present themselves as ‘deserving’ HIV citizens and avoid the blame associated with being HIV positive. However, in rejecting the view that they and their risk behaviours were to blame for their HIV infection and by developing an explanation that drew on broader social, structural and historical factors, these individuals were developing a tentative critique of focus on individual responsibility in HIV transmission as opposed to dangers of infection arising from the socio-economic environment. By framing the risk of infection in environmental rather than individual risk-behaviour terms, these individuals redistributed responsibility to reflect the social-structural realities of their lives. In this article, we reflect on the implications of these findings for public health measures such as risk prevention messages. We argue that it is important that such messages are not restricted to individual risk prevention but also include a focus of broader shared responsibilities of HIV.

In the Journals–March 2017, Part I by Julia Kowalski

1 Avril 2017 - 7:36pm

Here is Part I of our March article round-up.

American Anthropologist

A Dog’s Life: Suffering Humanitarianism in Port-au-Prince, Haiti

Greg Beckett

In the Bel Air neighborhood of Port-au-Prince, Haiti, most residents are dependent on humanitarian and foreign assistance for food, services, aid, and jobs. Yet, some residents feel that the conditions under which such aid is provided actively blocks their ability to live a life they find meaningful. In this article, I explore how some Haitians theorize this humanitarian condition through the figure of the dog, an animal that exemplifies, for Haitians, the deep history of violence, dehumanization, and degradation associated with foreign rule. I then contrast this with how foreign aid workers invoke the figure of the dog to illustrate their compassionate care for suffering others. Drawing on research among Bel Air residents and foreign aid workers in the years after a devastating earthquake destroyed much of Port-au-Prince, I show how the figure of the dog is central both to Haitian critiques of humanitarian aid and to the international humanitarian imaginary that responds to forms of suffering it deems cruel.

Biosocieties

“Let’s pull these technologies out of the ivory tower”: The politics, ethos, and ironies of participant-driven genomic research

Michelle L. McGowan, Suparna Choudhury, Eric T. Juengst, Marcie Lambrix, Richard A. Settersten Jr., Jennifer R. Fishman

This paper investigates how groups of ‘citizen scientists’ in non-traditional settings and primarily online networks claim to be challenging conventional genomic research processes and norms. Although these groups are highly diverse, they all distinguish their efforts from traditional university- or industry-based genomic research as being ‘participant-driven’ in one way or another. Participant-driven genomic research (PDGR) groups often work from ‘labs’ that consist of servers and computing devices as much as wet lab apparatus, relying on information-processing software for data-driven, discovery-based analysis rather than hypothesis-driven experimentation. We interviewed individuals from a variety of efforts across the expanding ecosystem of PDGR, including academic groups, start-ups, activists, hobbyists, and hackers, in order to compare and contrast how they relate their stated objectives, practices, and political and moral stances to institutions of expert scientific knowledge production. Results reveal that these groups, despite their diversity, share commitments to promoting alternative modes of housing, conducting, and funding genomic research and, ultimately, sharing knowledge. In doing so, PDGR discourses challenge existing approaches to research governance as well, especially the regulation, ethics, and oversight of human genomic information management. Interestingly, the reaction of the traditional genomics research community to this revolutionary challenge has not been negative: in fact, the community seems to be embracing the ethos espoused by PDGR, at the highest levels of science policy. As conventional genomic research assimilates the ethos of PDGR, the movement’s ‘democratizing’ views on research governance are likely to become normalized as well, creating new tensions for science policy and research ethics.

‘Big data’ or ‘big knowledge’? Brazilian genomics and the process of academic marketization

Edison Bicudo

‘Biocapital’, ‘biovalue’ and ‘bioeconomics’ are examples of terms formulated to interpret the commercial exploration of genomics science. Although highlighting important aspects, these terms tend to suggest the triumph of the market logic, which would have tamed all other logics. In this paper, it is argued that national and global markets obviously draw on economic rationales but can also be shaped by other rationales such as the academic logic. I analyse the genomics complex (formed by the combination between genomics inquiry, DNA sequencing and bioinformatics) in Brazil. A process of academic marketization is identified, four manifestations of which are analysed. First, academic interests have played a major role in the definition of themes to be investigated in Brazil at the expense of companies’ interests. Second, academics have prioritized human health studies at the expense of agrarian studies. Third, academic demands have expanded the importation of DNA sequencing devices to Brazil. Fourth, these demands have conducted Brazil towards an increasing and subaltern involvement in the global market of sequencing services. Markets are surely shaped by actors wishing to maximize profits. At times, however, they can also be modified by actors decisively moved by academic goals such as scientific prestige or access to research tools. A crucial challenge is that access to hight-throughput technologies (big data) does not necessarily lead to the formulation of theories of considerable scientific and political import (big knowledge).

Pathways and prospects in cancer research: Securing futures and negotiating boundaries

Alexandra Hillman, Jamie Lewis, and Glyn Elwyn

This paper draws on literature from the sociology of expectations to explore accounts of experts in cancer research and clinical practice. The cancer specialists’ accounts presented in this article are taken from interviews undertaken as part of a project that aimed to develop a research agenda for the next ten to thirty years that will achieve early detection and prevention in the four main cancers: (i) bowel and colorectal, (ii) prostate, (iii) lung and (iv) breast. Drawing on secondary analysis of the interviews, this article provides a sociological exploration of both the experts’ versions of the future and the interactions between the interviewer and research participant to show expectation in the making: the competing stories of what is and what ought to be the focus of cancer research now and in the (near) future. The building of a cancer research agenda is shown to be a contested future, represented by a dominant and resistant view of the cancer problem, in which cancer specialists must engage in performative strategies and boundary work to frame the present problem: what cancer is and how it can be detected and, subsequently, to claim credibility for a future pathway.

Body and Society

Self-tracking in the Digital Era: Biopower, Patriarchy, and the New Biometric Body Projects

Rachel Sanders

This article employs Foucauldian and feminist analytics to advance a critical approach to wearable digital health- and activity-tracking devices. Following Foucault’s insight that the growth of individual capabilities coincides with the intensification of power relations, I argue that digital self-tracking devices (DSTDs) expand individuals’ capacity for self-knowledge and self-care at the same time that they facilitate unprecedented levels of biometric surveillance, extend the regulatory mechanisms of both public health and fashion/beauty authorities, and enable increasingly rigorous body projects devoted to the attainment of normative femininity. These technologies of surveillance, normalization, and discipline thus function to augment, and facilitate the cooperation of, neoliberal-era biopower and post-feminist patriarchal power. My analysis of digital self-tracking devices’ instrumentality to biopower and patriarchy contributes to the emergent field of critical digital health studies and builds new connections between political, social, and feminist theories of embodiment; biopower studies; fat studies; and trans-disciplinary body studies.

Wireless Heart Patients and the Quantified Self

Julie Christina Grew and Mette Nordahl Svendsen

Remote monitoring of implantable cardioverter defibrillator (ICD) patients links patients wirelessly to the clinic via a box in their bedroom. The box transmits data from the ICD to a remote database accessible to clinicians without patient involvement. Data travel across time and space; clinicians can monitor patients from a distance and instantly know about cardiac events. Based on ethnographic fieldwork in two Danish hospitals, this article explores the configuration of the wireless ICD patient by following a number of patients through hospitalisation, implantation, in-clinic follow-up, and remote monitoring. Wireless therapy, we argue, scripts the patient as data. In high-tech clinical encounters, data are enacted as extensions and copies of the patient, and even proxies that, in patients’ experiences, may turn into identity thieves. In illuminating the multiple positions that data take in such clinical encounters and in patients’ experiences we discuss the ambiguities that arise when patients go wireless.

Critical Public Health

Posthumanist critique and human health: how nonhumans (could) figure in public health research

Carrie Friese & Nathalie Nuyts

This paper uses bibliometric analysis and critical discourse analysis to explore the rise in research involving nonhumans in public health, and the potential contribution of posthumanist social theory to this growing body of public health scholarship. There has been a sudden and rather marked increase in research and writing on animals, zoonoses and/or the ‘One-health’ paradigm within public health journals since 2006. Indeed ‘One-health’ rather than ‘posthumanism’ holds together research involving nonhumans of various kinds – from viruses to animals – within the discipline. Advocates of the ‘One-health’ paradigm argue that human and animal health must be integrated through joining the research, training and care practices of human and animal medicine. By mapping the terrain of public health research involving non-human species, we consider how and where posthumanist theory could be productively drawn upon to contribute to both critical and applied research involving nonhumans within public health. We specifically ask how the posthumanist insight to ‘follow the nonhumans’ would raise new questions and analytics for this research area.

Who or what is ‘the public’ in critical public health? Reflections on posthumanism and anthropological engagements with One Health

Melanie J. Rock

This paper extends the terms of engagement between social science, posthumanist debates and One Health by questioning whether ‘the public’ may include non-human animals. The One Health concept refers to interdependence between human beings and non-human species in socio-ecological systems. One Health interventions and critiques have tended to emphasize the prevention of zoonotic infections, whereas this paper reflects on more than a decade of engaged research in One Health promotion. Repeatedly, this particular approach to One Health promotion has highlighted the imprint of multi-species entanglements in public life, especially the problematization and politicization of people’s pets. Serious consideration for multi-species entanglements cautions against conflating ‘the public’ with human beings and human interests, to the exclusion of all others. Human beings have never lived separate and apart from non-human species, and we all depend on shared environments. To do justice to multi-species entanglements, socio-ecological theory should undergo expansion in health promotion.

Enacting toxicity: epidemiology and the study of air pollution for public health

Emma Garnett

This paper presents air pollution as a ‘post-human’ public health phenomenon. It draws on an ethnography of a multidisciplinary research project called Weather Health and Air Pollution to explore the material ways in which air pollution challenged scientists’ conceptualisations of harm and health. The epidemiologists on WHAP used statistical techniques to correlate data of air pollution concentrations with mortality and morbidity data collected by hospitals in order to establish a quantified measure of the health effects of exposure to air pollution. Initially, these correlations were problematic: plotted data points failed to map over temporal patterns. A series of negotiations followed. As a result of these, the concept of ‘season’ emerged as a temporal figure through which the very existence and meaning of air pollution was put to the test. Indeed, attempts by researchers to hold stable the notion of toxicity signalled the problem of trying to assess the bodily response to a polluted environment that has supposedly ‘already been’. The paper concludes by arguing how contemplating health through the lens of the material dimensions of time allows public health to: first, view health problems as constituted through bodies and environments, rather than as a relation separating the two; and second, open up indeterminacies and uncertainties as a generative condition of air pollution, and perhaps public health more generally.

The injecting ‘event’: harm reduction beyond the human

Fay Dennis

Since the 1980s, the primary public health response to injecting drug use in the UK has been one of harm reduction. That is, reducing the harms associated with drug use without necessarily reducing consumption itself. Rooted in a post-Enlightenment idea of rationalism, interventions are premised on the rational individual who, given the right means, will choose to avoid harm. This lies in stark contrast to dominant addiction models that pervade popular images of the ‘out of control’ drug user, or worse, ‘junkie’. Whilst harm reduction has undoubtedly had vast successes, including challenging the otherwise pathologising and often stigmatising model of addiction, I argue that it has not gone far enough in addressing aspects of drug use that go beyond ‘rational’ and ‘human’ control. Drawing on my doctoral research with people who inject drugs, conducted in London, UK, this paper highlights the role of the injecting ‘event’, which far from being directed or controlled by a pre-defined individual or ‘body’ was composed by a fragile assemblage of bodies, human and nonhuman. Furthermore, in line with the ‘event’s’ heterogeneous and precarious make-up, multiple ways of ‘becoming’ through these events were possible. I look here at these ‘becomings’ as both stabilising and destabilising ways of being in the world, and argue that we need to pay closer attention to these events and what people are actually in the process of becoming in order to enact more accountable and ‘response-able’ harm reduction.

Biopolitical precarity in the permeable body: the social lives of people, viruses and their medicines

Elizabeth Mills

This article is based on multi-sited ethnography that traced a dynamic network of actors (activists, policy-makers, health care systems, pharmaceutical companies) and actants (viruses and medicines) that shaped South African women’s access to, and embodiment of, antiretroviral therapies (ARVs). Using actor network theory and post-humanist performativity as conceptual tools, the article explores how bodies become the meeting place for HIV and ARVs, or non-human actants. The findings centre around two linked sets of narratives that draw the focus out from the body to situate the body in relation to South Africa’s shifting biopolitical landscape. The first set of narratives articulate how people perceive the intra-action of HIV and ARVs in their sustained vitality. The second set of narratives articulate the complex embodiment of these actants as a form biopolitical precarity. These narratives flow into each other and do not represent a totalising view of the effects of HIV and ARVs in the lives of the people with whom I worked. The positive effects of ARVs (as unequivocally essential for sustaining life) were implicit and the precarious vitality of the people in this ethnography was fundamental. However, a related and emergent set of struggles become salient during the study that complicate a view of ARVs as a ‘technofix’. These emergent struggles were biopolitical, and they related first to the intra-action of HIV and ARVs ‘within’ the body; and second, to the ‘outside’ socio-economic context in which people’s bodies were situated.

Beyond the person: the construction and transformation of blood as a resource

Rebecca Lynch & Simon Cohn

Many studies of blood donation have looked at the motives of donors, their relationship with the wider society and corresponding values such as gift-giving, altruism and responsibility. These underpin a rhetorical representation of person-to-person donation that neglects the many technical processes that take place between donation and eventual use and the material nature of blood itself. This ethnographic study, conducted in four UK blood donation sites, describes the various practices involved in routine sessions, rather than the motives or values or donors or staff. It focuses on the procedures and equipment that not only ensures blood is collected safely and efficiently, but the extent to which they determine the nature of the collected blood itself. Taking our cue from posthuman approaches, we argue donated blood as something that is ‘made’ only when it leaves the body; in other words, it is not simply extracted, but is constructed through specific practices. We illustrate how, as blood is separated from the body, it is increasingly depersonalised and reconstituted in order to have biomedical value. In this way, rather than reproducing the essentialist claim that blood is what social scientists often described as a ‘special kind of substance’, we point to the ways in which donated blood alters as it moves in time and space. We argue that such transformations occur in both symbolic and material realms, such that the capacity of blood to have both cultural meaning and clinical value is dependent on the fact that it is never stable or singular.

Technologies of the self in public health: insights from public deliberations on cognitive and behavioural enhancement

P. Lehoux, B. Williams-Jones, D. Grimard, and S. Proulx

The aim of this paper is to examine how members of the public define the legitimacy of cognitive and behavioural enhancement. Our study involved a two-step multimedia-based deliberative intervention in which participants of different age groups pondered the desirability of a fictional enhancement technology: a sweater made of ‘smart’ textiles that provide ‘bio-psycho-feedback’ (PBF) to its user. A 3-min video clip presenting the fictional technology was used to stimulate deliberations in four face-to-face workshops (n = 38). A larger group of participants (n = 57) then discussed, in an online forum, two short stories illustrating dilemmas raised by the PBF sweater. Qualitative analysis of transcripts of the workshops and the forum identified patterns of moral argumentation in the reasoning processes by which participants challenge the PBF sweater’s legitimacy: (1) when a shift in purpose occurs – from therapeutic to enhancement – and (2) when it engenders a shift in the user’s sense of self – from an autonomous self to a socially coerced individual. These findings add nuance to current knowledge on public perceptions of cognitive and behavioural enhancement, providing insight into the ways that people conceive of the tension between autonomy and social coercion.

Culture, Medicine, and Psychiatry

The Flexibility Hypothesis of Healing

Devon E. Hinton and Laurence J. Kirmayer

Theories of healing have attempted to identify general mechanisms that may work across different modalities. These include altering expectations, remoralization, and instilling hope. In this paper, we argue that many forms of healing and psychotherapy may work by inducing positive psychological states marked by flexibility or an enhanced ability to shift cognitive sets. Healing practices may induce these states of cognitive and emotional flexibility through specific symbolic interventions we term “flexibility primers” that can include images, metaphors, music, and other media. The flexibility hypothesis suggests that cognitive and emotional flexibility is represented, elicited, and enacted through multiple modalities in healing rituals. Identifying psychological processes and cultural forms that evoke and support cognitive and emotional flexibility provides a way to understand the cultural specificity and potential efficacy of particular healing practices and can guide the design of interventions that promote resilience and well-being.

Tension Among Women in North India: An Idiom of Distress and a Cultural Syndrome

Lesley Jo Weaver

The existing literature on Indian ethnopsychology has long asserted that somatization is a key aspect of experiences of distress. The study of idioms of distress arose out of work done in India (Nichter in Cult Med Psychiatry 5(4):379–408, 1981), but ironically, little subsequent work has systematically explored idioms of distress in this part of the world. This ethnographic study focused on the term tension (tenśan) and its relation to a cultural syndrome among women in urban North India. This syndrome appears to involve rapid-onset anger, irritation, rumination, and sleeplessness as key symptoms. It is often linked to specific circumstances such as domestic conflict and is associated with the stresses of modern urban life. People who report more symptoms of tension had consistently higher scores on the Hopkins Symptoms Checklist-25 for depression and anxiety. In this cultural context where psychiatric care is highly stigmatized, the language of tension can aid providers of mental healthcare (many of whom, in India, are not psychiatrists or psychologists) to identify and communicate effectively with potential patients whose mental healthcare needs might otherwise go unaddressed.

“You can’t choose these emotions… they simply jump up”: Ambiguities in Resilience-Building Interventions in Israel

Ariel Yankellevich and Yehuda C. Goodman

Following the growing critique of the use of Post-Traumatic Stress Disorder in post-disaster interventions, a new type of intervention aimed at building resilience in the face of traumatic events has been making its first steps in the social field. Drawing on fieldwork of a resilience-building program for pre-clinical populations in Israel, we analyze the paradoxes and ambiguities entailed in three inter-related aspects of this therapeutic project: The proposed clinical ideology aimed at immunizing against traumas; the discursive and non-discursive practices used by the mental-health professionals; and, participants’ difficulties to inhabit the new resilient subject. These contradictions revolve around the injunction to rationally handle emotions in response to disruptive traumatic events. Hence, the attempt to separate between a sovereign rational subject and a post-traumatic subject is troubled in the face of experiences of trauma and social suffering. Furthermore, we demonstrate how these difficulties reconstitute unresolved tensions between mimetic and anti-mimetic tendencies that have been pervading the understanding of trauma in the therapeutic professions. Finally, we discuss how the construction of the resilient subject challenges the expanding bio-medical and neoliberal self-management paradigm in mental health.

Cultivating Medical Intentionality: The Phenomenology of Diagnostic Virtuosity in East Asian Medicine

Taewoo Kim

This study examines the perceptual basis of diagnostic virtuosity in East Asian medicine, combining Merleau-Ponty’s phenomenology and an ethnographic investigation of Korean medicine in South Korea. A novice, being exposed to numerous clinical transactions during apprenticeship, organizes perceptual experience that occurs between him or herself and patients. In the process, the fledgling practitioner’s body begins to set up a medically-tinged “intentionality” interconnecting his or her consciousness and medically significant qualities in patients. Diagnostic virtuosity is gained when the practitioner embodies a cultivated medical intentionality. In the process of becoming a practitioner imbued with virtuosity, this study focuses on the East Asian notion of “Image” 象 that maximizes the body’s perceptual capacity, and minimizes possible reductions by linguistic re-presentation. “Image” enables the practitioner to somatically conceptualize the core notions of East Asian medicine, such as Yin-Yang, and to use them as an embodied litmus as the practitioner’s cultivated body instinctively conjures up medical notions at clinical encounters. In line with anthropological critiques of reductionist frameworks that congeal human existential and perceptual vitality within a “scientific” explanatory model, this article attempts to provide an example of various knowing and caring practices, institutionalized external to the culture of science.

Innocent or Intentional?: Interpreting Oppositional Defiant Disorder in a Preschool Mental Health Clinic

Christine N. El Ouardani

Based on 9 months of ethnographic fieldwork in a U.S. mental health clinic focused on the treatment of preschool-aged children who exhibited extremely disruptive behavior, this article examines the contradictions clinicians faced when trying to identify and attribute “intentionality” to very young children. Disruptive, aggressive behavior is one of the central symptoms involved in a wide-range of childhood psychopathology and the number one reason young children are referred to mental health clinics in the United States. In the clinic where I conducted my research, clinicians were especially interested in diagnosing these children with oppositional defiant disorder (ODD), in order to identify those at risk for more serious mental illness later in the lifecourse. In this article, I look at the different strategies clinicians used in interpreting whether aggressive, defiant behavior was a part of the child’s “self,” a biologically driven symptom of a disease, or a legitimate reaction to problematic social environments. I argue that conceptualizing intentionality as a developmental, interpersonal process may help to make sense of the multiple discourses and practices clinicians used to try to reconcile the contradictions inherent in diagnosing ODD.

“Hunger Hurts, but Starving Works”. The Moral Conversion to Eating Disorders

Gisella Orsini

This article aims to shed light on the self-perceptions of people with eating disorders in Malta and Italy through a deep understanding of their narratives. In contrast to the biomedical perception of the phenomenon and in opposition with the prevalent feminist theories on the subject, I consider eating disorders as the result of self-transformative processes. I suggest that anorexics, bulimics and binge eaters are actively and deliberately engaged in a project of moral self-transformation that is culturally defined. The moral transformations of women with eating disorders in Malta and Italy, the two considered contexts of this research, reflect the social expectations of women in these societies. The drastic changes in personal attitudes towards both food and the body that characterise eating disorders are the result of a complete dedication to the moral values embodied in thinness, namely the control of bodily needs and pleasure. The self-transformative process of people with eating disorders can be understood as a form of moral conversion along a continuum of increasing control over hunger: the higher the control, the higher the level of satisfaction and the degree of moral conversion achieved. Considering the general low recovery rates of people with eating disorders, this approach helps in the understanding of why people who are diagnosed with an eating disorder accept medical definitions and treatments to different extents.

“I Don’t Have Time for an Emotional Life”: Marginalization, Dependency and Melancholic Suspension in Disability

Brian Watermeyer

Social scientific analyses of inequality inform interventions ranging from the material and political to the personal and psychological. At the extremes of this continuum, Marxian militants view the exploration of the inner lives of oppressed people as irrelevant to liberation, while psychoanalysts bemoan the naïveté of “depsychologized” conceptions of the social subject. While both approaches have been applied to disability inequality, an historical materialist view has dominated the discipline of disability studies, where attention has only recently turned to psychological aspects of oppression. This article provides a brief introduction to some key aspects of the social and economic marginalization experienced globally by the disability minority. Thereafter, the complex debates around materialist and psychological accounts of, and interventions upon, racism and disablism are explored and compared, with particular reference to the place of grief and loss in disability discourse. The clinical fragment which forms the title of this paper introduces an engagement with Cheng’s model of racial melancholia, its conceptual origins and explanatory power. The balance of the paper considers how Cheng’s work may help illuminate how it is that disability inequality, like that of race, may remain an obstinate reality notwithstanding material interventions aimed at overturning it.

“They Treat you a Different Way:” Public Insurance, Stigma, and the Challenge to Quality Health Care

Anna C. Martinez-Hume, Allison M. Baker, Hannah S. Bell, Isabel Montemayor, Kristan Elwell, and Linda M. Hunt

Under the Affordable Care Act, Medicaid Expansion programs are extending Medicaid eligibility and increasing access to care. However, stigma associated with public insurance coverage may importantly affect the nature and content of the health care beneficiaries receive. In this paper, we examine the health care stigma experiences described by a group of low-income public insurance beneficiaries. They perceive stigma as manifest in poor quality care and negative interpersonal interactions in the health care setting. Using an intersectional approach, we found that the stigma of public insurance was compounded with other sources of stigma including socioeconomic status, race, gender, and illness status. Experiences of stigma had important implications for how subjects evaluated the quality of care, their decisions impacting continuity of care, and their reported ability to access health care. We argue that stigma challenges the quality of care provided under public insurance and is thus a public health issue that should be addressed in Medicaid policy.

Ethos

Citizens-in-Waiting, Deportees-in-Waiting: Power, Temporality, and Suffering in the U.S. Asylum System

Bridget M. Haas

This article explores how the interrelationship of power and temporality shapes the lived experiences and subjectivities of political asylum claimants in the United States. By lodging an asylum claim, migrants enter into a system that will, in effect, produce them as legitimate refugees deserving of protection or as illegitimate, “bogus” asylum seekers in need of expulsion. In this way, asylum claimants inhabit a dual positionality of citizen-in-waiting/deportee-in-waiting, as they often spend many years waiting for the adjudication of their cases. This article ethnographically analyzes how this dual positionality is inhabited by asylum claimants, producing novel forms of suffering and being-in-the-world. More specifically, I argue that the asylum process evokes a sense of “existential limbo”: a subjective and temporal state of being in which the asylum system, in the present moment, is understood as the locus of suffering and in which life and meaning making are defined by a sense of immobility.

“The Goal Is Not to Cheer You Up”: Empathetic Care in Israeli Life Coaching

Tamar Kaneh-Shalit

This article presents the controversial role of emotions in projects of self-realization through the particular practice of empathetic caring. Israeli life coaches claim to allow minimal space for trainees’ emotions: they teach them to master self-steering through a calculative reflexivity that also aims to limit affect. At the same time, they engage with their trainees’ feelings by invoking emotional reactions only to argue against their trainees’ subjective experiences. The article traces this mixture of “emotion-free” empathy and authoritative neoliberal technologies of the self to a culturally specific Israeli notion of care which is grounded in an egalitarian ethos. I therefore showed that Israeli coaching produces a unique vernacular version of neoliberal selfhood, one infused with tensions between seemingly incompatible attitudes: self-reflection and authoritarian assertions and a type of empathetic concern that is centered on the caregiver’s assessment rather than the feelings of those being cared for.

Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine

Personal health technologies, micropolitics and resistance: A new materialist analysis

Nick J Fox

Personal health technologies are near-body devices or applications designed for use by a single individual, principally outside healthcare facilities. They enable users to monitor physiological processes or body activity, are frequently communication-enabled and sometimes also intervene therapeutically. This article explores a range of personal health technologies, from blood pressure or blood glucose monitors purchased in pharmacies and fitness monitors such as Fitbit and Nike+ Fuelband to drug pumps and implantable medical devices. It applies a new materialist analysis, first reverse engineering a range of personal health technologies to explore their micropolitics and then forward engineering personal health technologies to meet, variously, public health, corporate, patient and resisting-citizen agendas. This article concludes with a critical discussion of personal health technologies and the possibilities of designing devices and apps that might foster subversive micropolitics and encourage collective and resisting ‘citizen health’.

Public health promotion of “local food”: Constituting the self-governing citizen-consumer

Colleen Derkatch and Philippa Spoel

This article explores how the recent and growing promotion of local foods by public health units in Ontario, Canada, rhetorically interpellates the “good” health citizen as someone who not only takes responsibility for personal health but, through the consumption and support of “local food,” also accepts and fulfills her responsibilities to care for the local economy, the community’s well-being, and the natural environment. Drawing on Charland’s concept of constitutive rhetoric, we analyze a selection of public health unit documents about local food to develop a textured account of the complex, multifaceted forms of health citizenship they constitute. Our analysis reveals that, despite their appeals to environmental sustainability and community well-being, these materials primarily characterize the ideal health citizen as an informed consumer who supports the interests of the neoliberal state through individualized lifestyle behaviors, consuming goods produced and distributed through private enterprise. By exhorting individuals to “buy local,” public health discourse therefore frames responsible health citizenship principally in consumerist terms that constrain the range of available options for citizens to engage in meaningful action vis-à-vis their food systems.

Resignifying the sickle cell gene: Narratives of genetic risk, impairment and repair

Maria Berghs, Simon M. Dyson, Karl Atkin

Connecting theoretical discussion with empirical qualitative work, this article examines how sickle cell became a site of public health intervention in terms of ‘racialised’ risks. Historically, sickle cell became socio-politically allied to ideas of repair, in terms of the state improving the health of a neglected ethnic minority population. Yet, we elucidate how partial improvements in care and education arose alongside preventative public health screening efforts. Using qualitative research based in the United Kingdom, we show how a focus on collective efforts of repair can lie in tension with how services and individuals understand and negotiate antenatal screening. We illustrate how screening for sickle cell disorder calls into question narrative identity, undoing paradigms in which ethnicity, disablement and genetic impairment become framed. Research participants noted that rather than ‘choices’, it is ‘risks’ and their negotiation that are a part of discourses of modernity and the new genetics. Furthermore, while biomedical paradigms are rationally and ethically (de)constructed by participants, this was never fully engaged with by professionals, contributing to overall perception of antenatal screening as disempowering and leading to disengagement.

When choice becomes limited: Women’s experiences of delay in labour

Natalie Armstrong and Sara Kenyon

Choice and patient involvement in decision-making are strong aspirations of contemporary healthcare. One of the most striking areas in which this is played out is maternity care where recent policy has focused on choice and supporting normal birth. However, birth is sometimes not straightforward and unanticipated complications can rapidly reduce choice. We draw on the accounts of women who experienced delay during labour with their first child. This occurs when progress is slow, and syntocinon is administered to strengthen and regulate contractions. Once delay has been recognized, the clinical circumstances limit choice. Drawing on Mol’s work on the logics of choice and care, we explore how, although often upsetting, women accepted that their choices and plans were no longer feasible. The majority were happy to defer to professionals who they regarded as having the necessary technical expertise, while some adopted a more traditional medical model and actively rejected involvement in decision-making altogether. Only a minority wanted to continue active involvement in decision-making, although the extent to which the possibility existed for them to do so was questionable. Women appeared to accept that their ideals of choice and involvement had to be abandoned, and that clinical circumstances legitimately changed events.

 

Health and Place

Between exposure, access and use: Reconsidering foodscape influences on dietary behaviours

Christelle Clary, Stephen Augustus Matthews, Yan Kestens

Good accessibility to both healthy and unhealthy food outlets is a greater reality than food deserts. Yet, there is a lack of conceptual insights on the contextual factors that push individuals to opt for healthy or unhealthy food outlets when both options are accessible. Our comprehension of foodscape influences on dietary behaviours would benefit from a better understanding of the decision-making process for food outlet choices. In this paper, we build on the fundamental position that outlet choices are conditioned by how much outlets’ attributes accommodate individuals’ constraints and preferences. We further argue that food outlets continuously experienced within individuals’ daily-path help people re-evaluate food acquisition possibilities, push them to form intentions, and shape their preferences for the choices they will subsequently make. Doing so, we suggest differentiating access, defined as the potential for the foodscape to be used at the time when individuals decide to do so, from exposure, which acts as a constant catalyst for knowledge, intention, preferences and routine tendency. We conclude with implications for future research, and discuss consequences for public policy.

 

Journal of the Royal Anthropological Institute

The (extra)ordinary ethics of being HIV-positive in rural Papua New Guinea

Holly Wardlow

HIV/AIDS continues to be intimately entwined with the moral domain, and thus a positive diagnosis can cast doubt on a person’s moral status. I draw on recent literature in the anthropology of ethics and morality, as well as feminist moral philosophy, to analyse the post-diagnosis practices of HIV-positive women in Papua New Guinea as they attempt to recuperate their moral personhood and make their ethical commitments visible to others. I argue that they carve out a repertoire of (extra)ordinary ethics from the ‘ordinary’ domain and that their practices tend towards a deontological ethics, rather than a virtue ethics, orientation.

Medical Anthropology Quarterly

Medical Cosmopolitanism in Global Dubai: A Twenty-first-century Transnational Intracytoplasmic Sperm Injection (ICSI) Depot

Marcia C. Inhorn

Dubai—one of the seven United Arab Emirates and the Middle East’s only “global city”—is gaining a reputation as a transnational medical tourism hub. Characterized by its “medical cosmopolitanism,” Dubai is now attracting medical travelers from around the world, some of whom are seeking assisted conception. Dubai is fast becoming known as a new transnational “reprohub” for intracytoplasmic sperm injection (ICSI), the variant of in vitro fertilization designed to overcome male infertility. Based on ethnographic research conducted in one of the country’s most cosmopolitan clinics, this article explores the ICSI treatment quests of infertile men coming to Dubai from scores of other nations. The case of an infertile British-Moroccan man is highlighted to demonstrate why ICSI is a particularly compelling “masculine hope technology” for infertile Muslim men. Thus, Muslim men who face barriers to ICSI access in their home countries may become “reprotravelers” to Dubai, an emergent ICSI depot.

Fertility Control: Reproductive Desires, Kin Work, and Women’s Status in Contemporary India

Holly Donahue Singh

This article reappraises the link between fertility and women’s status by examining changing means and meanings of reproduction in India. It is based on data gathered during and after 16 months of ethnographic fieldwork conducted between 2005 and 2007 in Lucknow, Uttar Pradesh, India, on social and cultural contexts of infertility. Lucknow is the capital city of Uttar Pradesh, India’s most populous state. Historical views of population and fertility control in India and perspectives on the contemporary use of assisted reproductive technologies (ARTs) for practices such as surrogacy situate the ethnographic perspectives. Analysis of ARTs in practice complicates ideas of autonomy and choice in reproduction. Results show that these technologies allow women to challenge power relations within their marital families and pursue stigmatized forms of reproduction. However, they also offer new ways for families to continue and extend an old pattern of exerting control over women’s reproductive potential.

The Erosion of Rights to Abortion Care in the United States: A Call for a Renewed Anthropological Engagement with the Politics of Abortion

Elise Andaya and Joanna Mishtal

Women’s rights to legal abortion in the United States are now facing their greatest social and legislative challenges since its 1973 legalization. Legislation restricting rights and access to abortion care has been passed at state and federal levels at an unprecedented rate. Given the renewed vigor of anti-abortion movements, we call on anthropologists to engage with this shifting landscape of reproductive politics. This article examines recent legislation that has severely limited abortion access and maps possible directions for future anthropological analysis. We argue that anthropology can provide unique contributions to broader abortion research. The study of abortion politics in the United States today is not only a rich opportunity for applied and policy-oriented ethnographic research. It also provides a sharply focused lens onto broader theoretical concerns in anthropology and new social formations across moral, medical, political, and scientific fields in 21st-century America.

Stress, Pregnancy, and Motherhood: Implications for Birth Weights in the Borderlands of Texas

Jill Fleuriet and T.S. Sunil

We argue that changes over time in how ideas of stress are incorporated into understandings of pregnancy and motherhood among Mexican immigrant women living in the United States may affect the documented increase of low birth weight infants born to those women. Stress has consistently been linked to low birth weight, and pregnant Mexican American and Mexican immigrant women differ in levels of perceived social stress. What is lacking is an explanation for these differences. We utilize a subset of 36 ethnographic interviews with pregnant immigrant women from northern Mexico and Mexican Americans living in south Texas to demonstrate how meanings of pregnancy and motherhood increasingly integrate notions of stress the longer immigrant Mexican women live in the United States. We situate our results within anthropological and sociological research on motherhood in the United States and Mexico, anthropological research in the U.S.–Mexico borderlands, and interdisciplinary research on Hispanic rates of low birth weight.

Caring for Strangers: Aging, Traditional Medicine, and Collective Self-care in Post-socialist Russia

Tatiana Chudakova

This article explores how aging patients in Russia assemble strategies of care in the face of commercialization of medical services and public health discourses and initiatives aimed at improving the population’s lifestyle habits. By focusing on how the formation of pensioner publics intersects with the health-seeking trajectories of elderly patients, it tracks an emerging ethic of collective self-care—a form of therapeutic collectivity that challenges articulations of good health as primarily an extension of personal responsibility or solely as a corollary of access to medical resources. By drawing on traditional medicine, these pensioners rely on and advocate for stranger intimacies that offer tactics for survival in the present through the care of (and for) a shared and embodied post-socialist condition of social, economic, and bodily precarity.

Gatekeepers as Care Providers: The Care Work of Patient-centered Medical Home Clerical Staff

Samantha L. Solimeo, Sarah S. Ono, Kenda R. Stewart, Michelle A. Lampman, Gary E. Rosenthal, and Greg L. Stewart

International implementation of the patient-centered medical home (PCMH) model for delivering primary care has dramatically increased in the last decade. A majority of research on PCMH’s impact has emphasized the care provided by clinically trained staff. In this article, we report our ethnographic analysis of data collected from Department of Veterans Affairs staff implementing PACT, the VA version of PCMH. Teams were trained to use within-team delegation, largely accomplished through attention to clinical licensure, to differentiate staff in providing efficient, patient-centered care. In doing so, PACT may reinforce a clinically defined culture of care that countermands PCMH ideals. Such competing rubrics for care are brought into relief through a focus on the care work performed by clerks. Ethnographic analysis identifies clerks’ care as a kind of emotional dirty work, signaling important areas for future anthropological study of the relationships among patient-centered care, stigma, and clinical authority.

Medical Research Participation as “Ethical Intercorporeality”: Caring for Bio–Social Bodies in a Mexican Human Papillomavirus (HPV) Study

Emily Wentzell

While medical research ethics guidelines frame participants as individual and autonomous, anthropologists emphasize the relational nature of health research participation. I analyze interviews with Mexican male HPV study participants and their wives to examine how research participants themselves focus on relationships when imagining research-related benefits. I argue that couples incorporated the local trope of the Mexican citizenry as a biologically homogeneous national body, which individual members help or harm through their gendered health behavior to understand these benefits. I use the concept of “ethical intercorporeality” to discuss spouses’ understandings of themselves as parts of bio–social wholes—the couple, family, and society—that they believed men’s research participation could aid both physically and socially. This finding extends the insight that focusing on relationships rather than individuals is necessary for understanding the consequences of medical research by showing how participants themselves might apply this perspective in context-specific ways.

The Effects of Water Insecurity and Emotional Distress on Civic Action for Improved Water Infrastructure in Rural South Africa

Nicola Bulled

The South African constitution ratifies water as a human right. Yet millions of citizens remain disconnected from the national water infrastructure. Drawing on data collected in 2013–2014 from women in northern South Africa, this study explores “water citizenship”—individual civic engagement related to improving water service provision. Literature indicates that water insecurity is associated with emotional distress and that water-related emotional distress influences citizen engagement. I extend these lines of research by assessing the connection that water insecurity and emotional distress may collectively have with civic engagement to improve access to water infrastructure.

Medical Humanities

When doctors are patients: a narrative study of help-seeking behaviour among addicted physicians

Jonatan Wistrand

In recent decades studies based on questionnaires and interviews have concluded that when doctors become ill they face significant barriers to seeking help. Several reasons have been proposed, primarily the notion that doctors’ work environment predisposes them to an inappropriate help-seeking behaviour. In this article, the idea of the ill physician as a paradox in a medical drama is examined. Through a text-interpretive and comparative approach to historical illness narratives written by doctors suffering from one specific diagnosis, namely opioid addiction, the complex set of considerations guiding their behaviour as patients are to some extent revealed. The article concludes that, in the identity transition necessary to become a patient, doctors are held back by their professional status and that every step to assist them needs to take shape based on an awareness of the underlying principles of the medical drama. Written illness narratives by doctors, such as those highlighted in this article, might serve as a tool to increase such awareness.

Suicide voices: testimonies of trauma in the French workplace

Sarah Waters

Workplace suicide has become an urgent social concern internationally with rising numbers of employees choosing to kill themselves in the face of extreme pressures at work. Yet, research on this phenomenon is hampered by fragmentary statistical data and the sheer contentiousness of this issue. This paper presents the preliminary findings of a research project on workplace suicides in France, where there has been a ‘suicide epidemic’ across a wide range of companies. I draw on an analysis of suicide letters linked to 23 suicide cases across three French companies during the period 2005–2015. My methodological approach is informed by the work of suicide sociologist, Jack D Douglas, who emphasised the importance of narrative, testimony and voice to our understanding of the causes of suicide. Douglas argued that an analysis of the ‘social meanings’ of suicide should start with a consideration of the motivations attributed to self-killing by suicidal individuals themselves and those close to them. Why does work or conditions of work push some individuals to take their own lives? What can the ‘suicide voices’ articulated in recent testimonies tell us about the causes of workplace suicide? In this paper, I treat suicide letters as a unique mode of testimony that can reveal some of the profound effects of workplace transformations on subjective, intimate and lived experiences of work. By examining French suicide testimonies, my aim is to deepen our understanding of the nature and causes of suicide in today’s globalised workplaces.

‘There was no great ceremony’: patient narratives and the diagnostic encounter in the context of Parkinson’s

Jane Peek

This paper draws on stories of diagnosis that emerged from a broader narrative study exploring the lived experience of Parkinson’s (n.37). Despite the life-changing nature of their diagnosis, participants’ narratives highlighted considerable shortcomings in the way in which their diagnostic encounter was handled, echoing the findings of previous research in which it has been noted that ‘the human significance’ of diagnosis was passed over. Building on the literature, this paper provides empirical material that reveals the sensitivities involved at the moment of diagnosis. By examining both the structure and content of participants’ narratives, this article discusses the diagnostic encounter in relation to three key concepts that connected many participants’ stories: a ‘bareness’ or lack of ‘ceremony’, a sense of emotional and physical ‘abandonment’ and the impact on a person’s illness story when faced with a ‘hierarchy’ of illness. This paper aims to raise awareness of contemporary issues related to the diagnosis of Parkinson’s, and invites reflection on how diagnosis might be undertaken in a way that truly acknowledges its human significance.

Who cares? The lost legacy of Archie Cochrane

Clemet Askheim, Tony Sandset, and Eivind Engebretsen

Over the last 20 years, the evidence-based medicine (EBM) movement has sought to develop standardised approaches to patient treatment by drawing on research results from randomised controlled trials (RCTs). The Cochrane Collaboration and its eponym, Archie Cochrane, have become symbols of this development, and Cochrane’s book Effectiveness and Efficiency from 1972 is often referred to as the first sketch of what was to become EBM. In this article, we claim that this construction of EBM’s historical roots is based on a selective reading of Cochrane’s text. Through a close reading of this text, we show that the principal aim of modern EBM, namely to warrant clinical decisions based on evidence drawn from RCTs, is not part of Cochrane’s original project. He had more modest ambitions for what RCTs can accomplish, and, more importantly, he was more concerned with care and equality than are his followers in the EBM movement. We try to reconstruct some of Cochrane’s lost legacy and to articulate some of the important silences in Effectiveness and Efficiency. From these clues it might be possible, we argue, to remodel EBM in a broader, more pluralistic, more democratic and less authoritarian manner.

Opposed to the being of Henrietta: bioslavery, pop culture and the third life of HeLa cells

Marlon Rachquel Moore

Operating at the intersecion of thanatopolitics and African-American cultural studies, this essay argues that the commercial sale of HeLa-themed art and other bioproducts perpetuates the bioslavery of HeLa cells, a circumstance created by legal and medical discourses tracing back to US racial slavery. Racial slavery normalised economic, social and legal inequities that the nation continues to struggle with and, the article posits, laid foundation for the dynamics that currently exist between Henrietta Lacks’ genealogical family, the HeLa cell line, and the medical-pharmaceutical establishment. The author turns to fashion ethics discourse and trademark law as potential sites for reparations.

Web Roundup: Moral enhancement by Jane Roberts

31 Mars 2017 - 11:25pm

This month’s web round up focuses on notions of treatment as enhancement…or vice versa? I’ve recently come off a stretch of spending quite a lot of time reading up on debates surrounding behavioral disorders in children. One issue that seems to crop up repeatedly is whether the use of medications in these young populations, particularly those living with ADHD, is merely treatment for the problem, or increasing the normalization of enhancement in an era where, for many, being ‘enough’ just isn’t enough anymore .

A recent article proposed that the millennial generation is more concerned with self- improvement and holds higher self-expectations than any generation before. Academic and social pressures, especially in those who have spent more of their formative years on social media, play into a wider societal expectation that one should be the best that they can possibly be using whatever means are available. The use of medications like Adderall for treatment of ADHD has long been indicated, but in this era of striving for self- improvement, such medications have moved from the realm of treatment to that of performance enhancer. The rise of the good grade pill is how the New York Times characterized a trend in high school students taking Adderall to gain an academic edge, while a growing percentage of doctors are willing prescribe Adderall to help in school, especially to those kids who are at an economic disadvantage.

This idea of academic performance enhancement via pharmaceutical means has been with us for a while, but what seems to be having its moment now is the notion of moral enhancement- the very sci-fi sounding possibility that behavior can be changed to something more morally acceptable through the use of a pill. Think ‘A Clockwork Orange’ style aversion therapy in a tablet. The scene in Kubrick’s film is referenced in this analysis of moral enhancement and moral freedom in which the we are asked to imagine witnessing an instance of road rage in which an angry driver stuck in a traffic jam inflicts abuse on the driver behind him. Such behavior violates behavioral, and many would argue moral, norms. The question asked of moral enhancement is if there was a technology that could affect the brain in a way that would halt that behavior, should we use it? Is moral conformity something we should strive for?

Its true that there are already medications out there, such as Prozac and Oxytocin, that affect our behavior, through making us less anxious, or increasing feeling of love an empathy, but we don’t necessarily view them as drugs designed to affect our moral thinking. As this article notes, scientists are increasingly targeting drugs that improve ethical behavior, but the question asked here is salient: does something desirable, such as altruism, empathy, or ‘treatment’ for racism, count as genuine moral behavior? Will there come a point, as the authors suggest, that morality drugs end up in the water supply, or as some sort of future substitute for prison? This piece on the CBC discusses the difficulties inherent in the idea of a ‘morality pill’ noting that moral intuition, and the decision made by a person  to act on that intuition or not, is an essential part of being human. Anything that interferes with that is in a sense messing with what it means to be human.

On the flip side, this article in Slate questions whether humanity as a whole is equipped to deal with 21st century challenges. The article cites Oxford University academics Julian Savulescu and Ingmar Persson arguing that as humans, we possess a moral psychology evolved for life in smaller communities with much less basic technologies than what we now have access to. They believe a “morality pill” could make self-control, empathy, and altruism more commonplace while discouraging violence and racism making humanity better able to address the worlds biggest problems.

This critique of the whole idea of morality in pill form lies in the argument that moral conformity comes at the cost of moral freedom. If pharmaceutical interventions can tweak our brains so that we become incapable of wrongdoing, we lose what John Danaher refers to as the ‘freedom to fall’ in which the freedom to do the wrong thing is central to what it means to be human. The subject of the discussion, the philosopher Michael Hauskeller  sees pro-enhancement arguments as failing to grasp fundamental aspects of the human condition, suggesting that these potential future technologies will not necessarily be improvements at all; rather will leave us as empty shells, bereft of any sense of an authentic self. Perhaps as Hauskeller and others suggest, in order to do good, we actually need to have the freedom to do bad. It becomes a choice that we make. Interesting food for thought to close out the month of March…

Janis H. Jenkins’ “Extraordinary Conditions: Culture and Experience in Mental Illness” by Katie Barron

28 Mars 2017 - 9:59pm

Extraordinary Conditions: Culture and Experience in Mental Illness

Janis H. Jenkins

University of California Press, 2015, 343 pages

It has been a privilege, through reading Extraordinary Conditions, to come into contact with a writer and practitioner of extraordinary compassion. The book bears witness to a process of open-ended interviewing that contributed to presenting the lives and experiences of Jenkins’ interlocutors with a deep concern for their dignity and self-esteem.

Part One of Extraordinary Conditions focuses on experiences of schizophrenia among different ethnic groups within the US, while Part Two focuses on trauma among Salvadoran refugees also living in the US. In all the interviews, Jenkins has been especially struck with the “centrality of struggle” which entail the wide variety of difficulties, including, losing jobs and relationships, weight gain as a result of medication, cognitive and logical incoherencies in experience, family criticism, and so forth. To describe the traditionally-named “patient” as an agent struggling to define and attain positive outcomes has political implications, implied in the text though not stated at length, viz. that the psychiatrist and the struggler are placed on an equal footing, as co-workers, along with helpers from other disciplines, working to accomplish negotiated goals.

The contention of the book is that psychiatry and anthropology have much to teach each other. For the anthropologist, studying mental illness within a given group sheds light on the whole group. The “extraordinary” illuminates the “ordinary”. In fact, Jenkins believes that those suffering diagnosed mental illness can be viewed not as different and separate from their community but as typical examples: “those with mental illness are just like everyone else – only more so.” A simple example of this comes in Chapter 3, where we meet the Spanish noun “nervios”. “Nervios” describes some kind of common and “normal” emotional and physiological state experienced from time to time by most Mexican Americans, similar, possibly, to the old-fashioned British “It’s me nerves”; yet Mexican Americans also tend to choose “nervios” to describe a state medically diagnosed as schizophrenia.

For the psychiatrist, on the other side, the anthropologist’s work of interviewing the “ill” one at home, in a domestic context, using the interviewee’s native language, interviewing other family members, with plenty of time and a flexible agenda, brings masses of socio-cultural information that can help both in diagnosing problems and in managing everyone’s expectations of the treatment. In particular, Jenkins’ research among the recipients of the “miracle drug” Clozapine (1998-2004) pointed up serious effects of the drug beyond a pharmacist’s predictions: unsatisfactory sexual relationships between fellow users of the clinic; stigma; disappointment at the lack of a final cure; the need for therapy to help adjust to and develop an altered self.

While Extraordinary Conditions advocates a multi-disciplinary approach, it is certainly weighted far more to present anthropological viewpoints than to take in contributions from other disciplines, such as medicine and psychotherapy. For instance, in Chapter 4, women who have experienced violence in El Salvador describe “el calor”, a state that comes on them at crisis moments, such as when directly faced with violence, and at other moments subsequently. ‘El calor’ includes fear, anger, heat, chills, sweating, hackles rising and numbing out. While physiology may provide other explanations such as a surge in adrenalin, the local, cultural explanation receives the most attention. Jenkins draws on literature that suggests that not only our words but also our bodies can intentionally communicate in culturally comprehensible ways. While this is an important contribution, readers from a biocultural background may also look for explanations grounded in the processes of the body. With “el calor”, Jenkins skips over possible medical explanations to revel in “the indeterminate flux of bodily existence”, “the indeterminacy of these tropes”, and “fleeting, evanescent disclosures of inexhaustible bodily plenitude.” Does she do this because she feels that vagueness leaves us more human?

Extraordinary Conditions is impressive for the breadth of data collected, the depth of understanding garnered from interviews, and for the kaleidoscope of ideas and concepts around what it is to be, and to be human, worthy of philosophy or poetry. If the work has a weakness, it is that there is so much material readers may be overwhelmed. For instance it is useful and fascinating to learn that magic among Jenkins’ interviewees contributed to sanity and not insanity; that what a “WASP” might consider “parental over involvement” is simply the cultural norm among Mexican Americans; that the body in a specific culture may be able to adjust its physiology to communicate within a culture; that schizophrenia presents different sorts of difficulties to relatives of different cultures; that communities or cultures may seek to manifest extreme versions of themselves. These separate contributions could be treated in later publications.

Katie Barron is a writer and educator in the UK in the fields of immigrant education and specific learning difficulties.

Speculative Health by Matthew Wolf-Meyer

8 Mars 2017 - 8:17pm

The last thirty years have seen an intensification in ways of thinking about our health and disease in the future tense. Risk, precarity, subjunctivity — all three point to the ways that temporality shape human experience, subjectively, interpersonally, and institutionally. But what if we turn our attention away from the clinic and its therapeutic technologies — which focus on the unfolding everyday futures of therapy and the modest gains and losses experienced through aging, debilitation, and disease progression — and attend, instead, to the speculative futures of health and disease in science fiction, futurism, and other genres that creatively attempt to think through, conceptualize, and bring into being particular futures? These futures might operate at the level of the individual — different conceptions of the self and subjectivity — and they might operate at the level of society and its institutions, entailing new social orders as well as innovations in current institutions.

In this series we invite contributors to consider how speculation makes particular kinds of persons and social forms possible; to think though other models and modes of speculation about the body, health, and disease — in film, literature, and mass media; to consider how particular technologies and techniques create futures.

Possible topics might include:

–Fictional descriptions of novel social orders and institutions that produce new forms of health and wellness – or create new forms of disease, disability, and disorder

–Ethnographic engagement with emerging technologies of care, attending to the future-making of technologists, medical professionals, and the technology itself

–Historical descriptions of earlier forms of speculations, whether they be in the context of fiction in the strict sense or speculative policy making

–Considerations of how speculative genres come to influence the ways individuals conceptualize the future of health and disease

–Other explorations of how speculation operates, specifically in the contexts of health, wellness, disease, disability, and death

Contributions of 2,000-4,000 words are sought by June 1st, to begin publication by mid-June. Please send all contributions to the series editor, Matthew Wolf-Meyer, at mwolfmey@binghamton.edu.

 

#SoComplicatedSyllabus – Check it out and please contribute! by Deborah Levine

7 Mars 2017 - 8:42pm

“I have to tell you, it’s an unbelievably complex subject…Nobody knew that health care could be so complicated,” said Donald J. Trump on Monday, February 27, at a press conference. This was his answer to a question about the then-seemingly stalled, but as of now reinvigorated, plans to repeal the Affordable Care Act, the 2010 health care law that is—both derisively and affectionately, depending on your political affiliations—known as Obamacare.

Pundits and journalists weighed in quickly with snarky jokes; it seemed they couldn’t help themselves. “Nobody? Nobody! Of course, everybody knows that health care reform is complicated,” said Jordan Weissman at Slate.com. On Twitter, thousands tried their hands at memes and quips, many of which paired pictures of Hillary Clinton or Bernie Sanders laughing next to Donald Trump’s quote. Others remarked that they themselves must be “nobodies,” since they knew well that health care was complicated.

Perhaps unintentionally, the President actually made a really important point. If you aren’t someone who spends much time thinking about or studying the U.S. health care system, it can be stunning just how complex every aspect of the system is. I trained as a historian of medicine, and I teach undergraduate courses on the workings of the American health care system in a policy program. My students are continually surprised by the contradictory inequalities and complexities of our so-called “system.” In the fall of 2015, after participating at a conference with an international audience of scholars in Dublin, Ireland, the overarching question I got over dinner, from a highly educated audience of peer academics, was one of incredulous dismay, and amounted to: Is this really how the health care system in the US works? And perhaps like many of you, every time I start a new research project, I am bewildered afresh by the nuances of the injustice and contorted logics of the system I thought I had already confronted.

Over the last few years, scholars have been taking to twitter to compile and disseminate important academic works with valuable contributions to make to our most pressing political, social, and cultural debates. I have been following the fantastic #ImmigrationSyllabus, which began as a collaborative syllabus project on twitter, and that I have been using for my own teaching and research over the last several months. The Ferguson Syllabus, organized by Sociologists for Justice, first introduced many of us to the power of collaborative syllabus design and is a phenomenal resource. The #PulseOrlandoSyllabus “compiled by librarians and teachers,” intends to be a “living document [which] exists as a resource to understand our pain and grief, sadness and healing in the wake of the shooting at Pulse Night Club on June 12, 2016.”

Following Trump’s remarks, and thinking of these efforts, I tweeted, “Colleagues, perhaps it is time for a #SoComplicatedSyllabus?”

We who study medicine and health care in the US from humanities or social science standpoints have an opportunity, and a responsibility, to expose and challenge the complexities of our health care system among wide audiences. We are more familiar than most with the deep problems that have plagued the American approach to health care since the first years of colonization and slavery.

Tracking the submissions on twitter has been inspiring, and exciting. Bloggers and editors from vitally important group blogs like Nursing Clio and Remedia contributed their favorites. Friends and colleagues from within the history of medicine and health policy added their own go-to authors and scholarships for working through the complexity of the US healthcare system, and a number of practitioners weighed in as well. The result is a growing list of works, ranging in subjects from across the social studies of medicine.

Some works have come up repeatedly, like Alondra Nelson’s brilliant 2013 book Body and Soul: The Black Panther Party and the Fight against Medical Discrimination, Seth Holmes’ 2013 Fresh Fruit, Broken Bodies: Migrant Farmworkers in the United States and Beatrix Hoffman’s excellent 2012 history, Health Care for Some: Rights and Rationing in the United States since 1930. Others, like Cornelia Dayton’s 1991 article, “Taking the Trade: Abortion and Gender Relations in an Eighteenth Century New England Village,” were only suggested once but with the note that they were particularly useful for reaching students and engaging with difficult but essential materials. Forthcoming works suggested by eager future readers, like Deirdre Cooper Owens’ Mothers of Gynecology: Slavery, Race, and the Birth of American Women’s Professional Medicine and Andrew Ruis’ Eating to Learn, Learning to Eat: The Origins of School Lunch in the United States show that there is much good reading to look forward to on our #SoComplicatedSyllabus.

The list is growing thanks to dedicated contributors, but it is much too light in many areas—especially anthropology, drug policy, sociology, and literature—I hope you will contribute too.

Deborah Levine is a historian of medicine and assistant professor in the program on Health Policy and Management at Providence College. Her most recent article, “Mere Mortals: Over selling the Young Invincibles,” co-authored with Jessica Mulligan, is coming out next month in the Journal of Health Politics, Policy and Law.

Lenore Manderson, Elizabeth Cartwright and Anita Hardon’s The Routledge Handbook of Medical Anthropology by Casey Golomski

6 Mars 2017 - 5:06pm

The Routledge Handbook of Medical Anthropology

Edited by Lenore Manderson, Elizabeth Cartwright and Anita Hardon

Routledge, 2016, 393 pages.

 

This is not a run-of-the-mill medical anthropology reader. Thank Routledge, its editors, and contributors for it. As someone who regularly convenes intermediate-advanced courses in medical anthropology, I’m grateful for its readability, teachable qualities, and particular theoretical angles. I’m going to trace four areas where I think the new Routledge Handbook of Medical Anthropology is innovative among the current offerings of similar edited volumes on the market for our discipline.

 

Visual innovation :: contextualized photographic figures

Recently, there’s been hot and necessary discussion about the images used for anthropology book covers: Tunstall and Esperanza (2016) over at Savage Minds provide interesting practical guidelines for book cover image selection as a way to decolonize anthropology. Ethnographies of medicine, suffering, and war with nuanced photographic figures of belabored people arguably make these books more compelling and help them win awards (De Leòn with Wells 2015, Biehl with Eskerod 2007, 2013), and also raise ethical questions about the images we choose to give life to our writing. The Routledge Handbook contains 16 photographic figures, taken by both contributors and others selected from a global Internet-based call-for-submissions in 2015, each placed as a ‘prelude’ (xii) to its respective chapter. A thoughtful, roughly 150-175 word description by the photographer accompanies each figure, giving it fuller context beyond the usual one sentence caption.

I appreciate projects that aim to decolonize higher education, the academy and our respective discipline, and find Tunstall and Esperanza’s approach insightful. Some might criticize the Handbook for its use of a conventional anthropological image for the cover—it features a photograph by Cartwright of an indigenous Oaxacan mother and her daughters waiting to see an herbalist for a sore throat. Despite this, the volume as a whole embodies other critical approaches that align with the decolonizing project: its images’ lengthier descriptions help eschew would could be misread in a single caption; it uses images that exemplify health and life’s ‘mundanity’ (xii) for chapters that also discuss white populations in North America, Australia and Europe; and it includes an explanation of the overall process of image selection as one of knowledge production (xii-xiii). Figures that were illustrative in these regards were Mary Anne Funk’s image and description (Fig. 12, p. 260-261) of homeless Oregonians using a shelter’s mobile shower facility to open the Handbook’s chapter on “Global Quests for Care”; Jerome Crowder’s image and description (Fig. 10, p. 206-207) of medicines for sale like Vicks Formula 44 at the mercado negro (“black market”) in La Paz, Bolivia to open the chapter on “Marketing Medicine”; and Athena Madan’s image and description (Fig. 13, pp. 280-281) of an earnest, young professional woman named Fatimah leading a peace-building workshop in a well-lit office in Kabul, Afghanistan to open the chapter on “War, Violence and Social Repair.”

 

Organizational innovation :: an edited volume that is not quite an edited volume

By saying the Routledge Handbook is organizationally innovative, I mean that the textual structure and narrative delivery of the content is above par. This is an edited volume that is not quite an edited volume. Each chapter is co-authored by Manderson, Cartwright and Hardon, but each takes lead authorship on different chapters. In total, including the three main authors, there are 67 contributors. Each chapter contains between 3 and 5 case studies written by the other contributors, which are embedded in the main co-authors’ narrative to make up the chapter’s thematic whole. For example, chapter 5, with Hardon as the lead author, is titled “Stress in Everyday Life” and explores “the ways in which people live with and talk about stress in a variety of sociocultural and economic settings” and “the diverse ways people strive to manage or cope with stress” (94). As it moves through sub-sections on “Diverse Idioms of Distress”, “Managing Stress”, “Talking Therapy”, and “Escape”, the chapter slips narratively into embedded case studies on Japanese depression by Junko Kitanaka, Argentinean psychoanalysis by P. Sean Brotherton, and Indonesian promotions of smoking by Mark and Mimi Nichter. Still, the chapters function well even if one chooses to excise or focus on a single particular case study for classroom assignments.

The book as a whole is not limited to a chronological-historical linearity. The first half of the book focuses on phenomena related to the life course and kinship, and the second half on globalized movements of people, goods and institutions in the contemporary world as they affect health and quality of life, although these two themes are by no means hard or fast. It does not start with classic articles by W.H. Rivers or Irving Hallowell. It does end though with a future-oriented chapter titled “Vital Signs: Medical Anthropology in the Twenty-first Century” that points to topics for the discipline to start exploring anew or invest itself in further. These include: the epigenetics of structural violence; ecohealth, ecobiopolitics and ecorisk as concepts to describe relations amongst “humans, other living things, and the environment” (372); populations’ adaptation and resilience in the face of climate change; governmentality and the global environment; revisiting cultural competency models and practice; the reshaping of medical practice through big data; relations between humans, bodies, and microbial entities: “an Anthropology of Us” (374); and health and wellbeing for asylum seekers—this section uncannily references the rise of (then U.S. presidential-candidate and now president-elect) Donald Trump.

I also like the broadly accessible language of the Routledge Handbook. To me, chapters in comparable edited volumes like Wiley-Blackwell’s (2010) A Reader in Medical Anthropology have a gloss of prestige, are prosaic, and complex in theory, but are often too in-accessible to be instructional, not only to the majority of undergraduate students but colleagues in allied fields to whom we want to recommend demonstrable examples of our work. Singer and Erickson’s (2015) A Companion to Medical Anthropology, to me, is more usefully instructionally-oriented, or in the case of Inhorn and Wentzell’s (2012) Medical Anthropology at the Intersections, more practically-oriented. Both are heavy with works by familiar senior researchers. Perhaps this is an issue of sales and circulation—having likely already read and reread a recognizable canon of theory offered in other edited volumes like these, the reader kind of knows what he’s going to get when he buys it, and that’s low risk. There’s comfort in familiarity, and that itself is cultural (Mahler 2013). With the Routledge Handbook, I think readers can ably get outside of the canonical comfort zone for a while.

 

Intergenerational innovation :: fresh contact between junior and senior scholars

This comment about canonical versus new research represents one of the best things about the Routledge Handbook: it is intergenerationally innovative. It includes a substantial number of works by postdoctoral and doctoral fellows, assistant professors, and academics, who are working in fields of public health and development. The embedded, yet still independent form of the case studies produce a realistic conversation between current theory and current research projects unfolding the world over. This synergy is exciting compared to other volumes where only a small number of emerging researchers and their ethnographies make the cut. Graduate students who did not train with the handful of key theorists at particular institutions represented in other volumes should find the Routledge Handbook refreshing for this reason. When editors take chances on young research, there’s great intellectual payoff.

To be sure, there is still a good number of senior contributors, who I define as having (had) full Professorships: Redfield, Leibing, Adams, Georges, Nichter, McLaughlin, Obrist, Pool, Pols, Reis, Sleeboom-Faulkner, Davis-Floyd, Herr Harthorn, Boonmongkon, Desclaux, and Allen. Several of the younger researchers are associated with Manderson and Hardon’s research hubs at the University of the Witwatersrand and University of Amsterdam, respectively. Some of the young research really stood out and strengthened their particular chapters: Arianna Huhn’s ethnophysiological research in a small Mozambican town gives ethnographic weight to the often heard but rarely analyzed metaphor linking food and eating to sex. Rachel Carmen Ceasar’s account of mass grave exhumations related to twent;eth-century histories of political violence in Spain; and Roberta Raffaetà’s description of two women’s allergies in Verona, Italy using theories of ecological relationality. These and other contributors works evidence a wonderful intellectual “interplay” (5-6) between ideas and institutions across generations, a term I borrow from the authors’ description of conceptual frameworks that support the volume’s objectives and emphasize a multiplicity of forces that shape our understanding of health.

 

Theoretical innovation :: current approaches to un-conventional topics

Finally, I think the Routledge Handbook offers what I read as theoretical or topical innovations in the discipline, or at least as the discipline is depicted in comparable edited volumes or readers. HIV/AIDS, gender, globalization, and ecology all trend well and are foregrounded as topics meant to reshape the theories we construct to explain the phenomena we document ethnographically. This also goes into the authors’ account of the discipline in the introduction, tracing medical anthropology’s practical and conceptual history via the Alma Ata Declaration, French critical philosophies, Kleinman’s explanatory models, second wave feminism’s work on gender and health, and the HIV/AIDS pandemic. Boldly, they write, “it was HIV and its lethal consequence as AIDS, however, that most powerfully stimulated medical anthropology” (5) as a discipline in the late twentieth century.

Several chapters focus on somewhat unconventional topics for medical anthropology edited volumes, among them childhood, chronicities, and medical travel. On childhood, for example, rather than simply reproduction, the authors stress children and adolescents’ own experiences and perspectives on health and agency to underscore how these young people are active participants in their illnesses—taking them on “with insight and fear, humor and anger, and, ultimately, quite often, with grace” (18). They include this topic too as a way to make us question presumptions about research ethics with children and other “vulnerable populations.” The Handbook also takes interesting theoretical spins on conventional topics: cross-cultural accounts of the body are framed through theories of resistance, and the relationship between health and environment is considered through the lens of the Anthropocene. Chapter 3 specifically pairs sexuality with theoretical approaches using language and concepts of “technology” in a wide sense, ranging from contraceptives and surgeries to embodied and aesthetic practices. The growing literature on care and caregiving is discussed in chapter 8 on ways of caring through information-communication technologies, discussing patients and caregivers’ use of the Internet, smart phones, and web cams to address health and socio-emotional concerns. The specificity of the authors’ theoretical angles highlights the strength of a particular interpretive approach and allows instructors to compare it with others not as strongly represented in the chapter.

Lastly, the international scope of its authorship, both of editors and contributors, is something else that sets this book apart from others. It represents intellectual institutional homes in Western Europe, Australia, North America, and Southern Africa. Theories emanating from the University of Amsterdam and other Western European schools are well represented throughout, like Annemarie Mol’s writings on ontology and technology. Manderson’s vast professional archive on gender, health and the environment supports the volume as a whole, as does Hardon’s work on pharmaceuticals and HIV/AIDS and Cartwright’s on structural vulnerabilities, indigeneity, and immigration. Their far reaching geographic and disciplinary scope nicely embodies what medical anthropology can do and be as part of growing discussions of world anthropologies (see the now regular “World Anthropology” section of American Anthropologist), as well as how anthropology can further engage a rapidly changing world.

References

Biehl, João, with Torben Eskerod. 2007. Will to Live. Princeton: Princeton University Press.

—. 2013. Vita. Berkeley: University of California Press.

De Leòn, Jason, with Michael Wells. 2015. The Land of Open Graves. Berkeley: University of California Press.

Good, Byron, Michael M.J. Fischer, Sarah S. Willen, and Mary-Jo DelVecchio Good, eds. 2010. A Reader in Medical Anthropology: Theoretical Trajectories, Emergent Realities. Malden, MA: Wiley-Blackwell.

Inhorn, Marcia C. and Emily Wentzell, eds. 2012. Medical Anthropology at the Intersections: Histories, Activism, and Futures. Durham, NC: Duke University Press.

Mahler, Sarah J. 2013. Culture as Comfort. Boston: Pearson.

Singer, Merrill and Pamela I. Erickson, eds. 2015. A Companion to Medical Anthropology. Malden, MA: Wiley-Blackwell.

 

Casey Golomski is a cultural and medical anthropologist working in Southern Africa and an Assistant Professor at the University of New Hampshire. Find out more about his research and writings at his ResearchGate.net profile.

In the Journals: February 2017 by Christine Sargent

2 Mars 2017 - 3:13am

American Ethnologist

Good ramps, bad ramps: Centralized design standards and disability access in urban Russian infrastructure

Cassandra Hartblay

Accessible design seeks to reconfigure the social by restructuring the material. As the idea moves globally, it becomes entwined in local logics of moral obligations between citizens and the state. Wheelchair users in the city of Petrozavodsk, in northwestern Russia, talk about inaccessible infrastructure as being embedded in moral relationships. In their stories, hierarchies of expertise diffuse responsibility for outcomes and devalue user knowledge. When accessible design elements are installed to meet minimum standards, they are “just for the check mark” and often do not “work.” Wheelchair ramps produce value for businesses or governments by representing an idea of access that circulates as a commodity. Failed accessible design draws attention to a moral field governing the responsibilities of actors to produce a “good” built environment, imbricated in teleologies of progress. [disability, design, infrastructure, access, ramps, postsocialism, Russia]

Self-governance, psychotherapy, and the subject of managed care: Internal Family Systems therapy and the multiple self in a US eating-disorders treatment center

Rebecca J. Lester

“The self” has seen a surprising resurgence in recent anthropological theorizing, revitalizing interest in whether and how it can be studied ethnographically. These issues are brought to the fore by a newly popular psychotherapy technique, Internal Family Systems therapy (IFS), as practiced in a US eating-disorders clinic. There, clinicians and clients negotiate tensions between this model’s understanding of a multiple, refracted self and managed-care companies’ insistence on personal responsibility. In considering the moral and pragmatic work of IFS in the clinic, a new critical anthropology of selfhood illuminates the vectors through which economic and political commitments become imbricated in the self. They do so in ways that resist both psychologism and subjectivism while holding them in productive—albeit sometimes troubling—tension.

Psicoeducación in the land of magical thoughts: Culture and mental-health practice in a changing Oaxaca

Whitney L. Duncan

At a time of uncertainty and change in Oaxaca, Mexico, mental-health practice dovetails with political-economic projects to reflect and produce tensions around “culture.” Promoting mental health is linked to goals for economic development, and notions of culture and modernity are co-constructed in ways that cast culture as a barrier to mental health. “Psychological modernization” efforts therefore seek to flatten cultural difference in the interests of national advancement. Not only do psy-services in Oaxaca provide means of self-understanding and technologies for self-cultivation in the context of modernity, but they also actively seek to produce the psychological conditions for modernity. Yet many professionals attribute Mexico’s mental-health problems to the very processes of modernization, development, and globalization that their projects seek to facilitate.

Resonant worlds: Cultivating proximal encounters in planetary science

Lisa Messeri

Planetary scientists are adept at producing knowledge about objects that are far removed from their lived experience of place and time. Sometimes, they overcome this distance by positioning Earth as a planet that can stand for other worlds. Encountering Earth becomes an encounter with another planet. When scientists experience the Earthly as otherworldly, they sometimes feel an excitement here described as “resonance.” Fully felt resonance is rare, but scientists devote much time and effort to preparing for it so as not to miss its fleeting instances. Just as resonance affords scientists the possibility of experiencing the distant, it also describes moments when the anthropologist is in harmony with what had previously been strange. Thus, resonance is a mode of cognitive and affective reasoning that collapses distance and transforms the similar into the same.

 

Critical Public Health

Special Section: Anthropological Interrogations of Evidence-Based Global Health

In search of results: anthropological interrogations of evidence-based global health

Elsa L. Fan & Elanah Uretsky

This special section brings together a collection of papers that interrogate evidence itself as an object of inquiry and examines how different forms of evidence are produced, negotiated, and valued across a range of health contexts. In unpacking evidence and the practices implicated in its production, these papers explore the health interventions mobilized in global health from within the positivist methods that dominate its discourse, attending specifically to the blind spots that sometimes emerge from the limited purview of what is recognized as evidence. In particular, all the papers foreground the business rationalities, measurement technologies, funding structures, and regime of actors and agendas that distinguish global health from its predecessor international health (see Brown, Cueto, & Fee, 2006) and its counterpart public health, both of which are bound by national governance and financing. Our papers thus aim to unravel that ‘obscure object of global health’ (Fassin, 2012) that seems to be less about the spatial and geographic boundaries that determine health and more about the financial and political arrangements through which health practices (and inequalities) are configured. The primary concern is often who is setting the standards for measuring health and how these forms of knowledge circulate in ways that shape the health outcomes themselves.

“Guilty until proven innocent”: the contested use of maternal mortality indicators in global health open access

Katerini T. Storeng & Dominique P. Béhague

Making global health knowledge: documents, standards, and evidentiary sovereignty in HIV interventions in South India

Robert Lorway

Multiple accountabilities: development cooperation, transparency, and the politics of unknowing in Tanzania’s health sector

Noelle Sullivan

‘We can’t do that here’: negotiating evidence in HIV prevention campaigns in southwest China

Elanah Uretsky

Counting results: performance-based financing and HIV testing among MSM in China

Elsa L. Fan

Critical Public Health, Cont.:

University students’ drinking as a social practice and the challenge for public health

Sian Supski, Jo Lindsay & Claire Tanner

In this paper, we explore the relational dynamics of alcohol consumption by university students, drawing on qualitative interviews with fifty undergraduates in Victoria, Australia. We argue that university drinking is a social practice comprised of a bundle of activities that operate together to reinforce excessive consumption. Drawing on a distinct version of social practice theory, we conceptualise drinking as an organising principle of university social life with interacting elements – meanings, materials and competences. The meanings of drinking include cultural conventions, expectations and socially shared meanings that alcohol is central to student life. Materials of drinking include objects and infrastructures such as, beverage choice, drinking venues and mobile phones. Drinking competences include managing bodily effects of alcohol but also social relationships while consuming alcohol. The distinct social practice perspective we utilise can assist public health to address the interrelated dynamics of alcohol consumption as a social practice, with its own trajectory into which students are recruited and become carriers of the practice while at university.

 

Cultural Anthropology open access

Openings and Retrospectives – Speed: An Introduction

Vincent Duclos, Tomás Sánchez Criado, Vinh-Kim Nguyen

On every front, life is being mobilized. Connected and put in motion, activated and fast-forwarded, life is sped up in unprecedented ways. This Openings collection is premised on the conviction that the world is accelerating, and that anthropology needs to catch up. We do not make a claim for a faster anthropology, but rather for the crafting of concepts capable of creatively engaging with forces and intensities—technological, but also economic, political, and geological—that constitute and spoil the worlds we are attached to. We aim to open anthropological practice to temporalities that are immanent to both the congealment of life—for instance, of responsive capacities—and to potential deviations and overflows.

Speed Crash Course

Carlo Caduff

Inhabiting Media: An Anthropology of Life in Digital Speed

Vincent Duclos

Viral Speed: Infrastructure, Connectivity, Ontogeny; or, Notes on the Molecular Epidemiology of Epidemics

Vinh-Kim Nguyen

An Idiotic Catalyst: Accelerating the Slowing Down of Thinking and Action

Ignacio Farías

Cultural Anthropology, Cont.

Humanitarian Care and the Ends of Life: The Politics of Aging and Dying in a Palestinian Refugee Camp

Ilana Feldman

What [does it mean] to live as a refugee over the long term? One thing that it can mean—and in the Palestinian case of decades of displacement, what it necessarily has meant for many people—is to die as a refugee. How do humanitarian actors respond to the inevitability of death? Ordinary deaths are not easily incorporated into a field of intervention whose primary purpose is to save lives: to stop people from dying from “stupid things” (Redfield 2013, 31). This aim helps delimit the activities within the scope of humanitarian concern. Humanitarianism is a “regime of life,” in the sense that Lisa Stevenson (2014, 68) describes, a system “in which keeping people alive has become the primary goal.” Practitioners do not, of course, imagine immortality for aid recipients, but their orientation toward life-saving has limited their attention to servicing dying. A second characteristic of most humanitarian work is that it is intended to be short-term: to respond to crisis and conclude when normal conditions reemerge. In the Palestinian case, and in many other instances around the globe, this intention cannot be realized. Instead, humanitarian work has been compelled to respond to chronic conditions and to confront people’s needs across the whole life cycle. Long-term refugee status means that not only life, but also the end of life must become a humanitarian concern.

Scenes of Commitment

Bharat Jayram Venkat

On a late spring morning in 2011, a middle-aged man with a respectable head of gray waited patiently in the hallway of a private clinic in Chennai, the capital city of the South Indian state of Tamil Nadu. This man, whom I will call Vasudevan, had for many years been committed to therapy, unfailingly consuming the medications that made it possible for him to live with HIV.1 For many of the clinic’s staff, Vasudevan had been an ideal patient, in stark contrast to those who came to the hospital only in moments of desperation, long after their drug supplies had been exhausted. That morning, he had been among the first to arrive at the clinic, so he would be among the first to be seen by the doctors. His appointments tended to run like clockwork. On this particular morning, however, things did not go as expected. He no longer wished to take his medication. To the contrary, Vasudevan asked to die

To Revive an Abundant Life: Catholic Science and Neoextractivist Politics in Peru’s Mantaro Valley

Stefanie Graeter

I did not expect to see a scientific laboratory in the highland city of Huancayo, let alone at the offices of its archbishop. In the crisp morning air of a mid-September day in 2010, I awaited the sight of more desks, file cabinets, binders, and manila envelopes (the stuff of NGOs) as my guide deftly unfastened the three stiff locks of an iron-wrought door. Yet when the door swung open, the room revealed an entirely different menagerie of objects. In the entranceway lay bulky pieces of air-monitoring equipment, scattered among coolers chock-full of plastic bottles. On top of black countertops, boxed rubber gloves neighbored bottles of ethanol, their red nozzles poised at right angles awaiting surfaces to disinfect. In my line of sight stood a heat-sanitizing drying rack, a vacuum-hooded counter space, and the cascading pages of safety warnings fastened to the wall. In a corner, a few too many lab coats overwhelmed a standing hanger, unfit for its task. Although no one thing makes a lab a lab, at that moment I knew I knew a lab when I saw one. This article analyzes the integration of religious and scientific practitioners and practices within a Catholic knowledge-making project called El Proyecto Mantaro Revive (Revive the Mantaro Project).

Living the Laughscream: Human Technology and Affective Maneuvers in the Iraq War

Nomi Stone

Drawing on twenty-six months of ethnographic fieldwork in the extended Iraq warscape—from predeployment exercises in mock Middle Eastern villages across the United States to Iraqi refugee neighborhoods in Amman, Jordan—I examine the contours of the wartime work outsourced to populations I call human technologies: individuals construed by the U.S. military as embodied repositories of cultural/regional knowledge. These individuals act as local mediators, translators, advisors, and proxies for U.S. military personnel and produce soldiers as insiders in the war zone: they are hired to augment both U.S. military access within the war zone and soldiers’ understanding of the so-called human terrain. I examine in this article how an ironic disjuncture between military prescriptions for authenticity and role-players’ experiences of inauthenticity generates moments of charged incongruency for those hired to embody constricted versions of their cultures. I argue that a charged tension manifests itself in the training apparatus: on the epistemological level, even as they experience excess, role-players work to make the simulations “look good” to retain their jobs; meanwhile, that excess manifests affective overflow—in particular, one form that a role-player called “the laughscream.” I contend that such moments of affective excess create a momentary reprieve for role-players while typically not disturbing the military structure.

 

Current Anthropology

Animal Autonomy and Intermittent Coexistences: North Asian Modes of Herding

Charles Stépanoff, Charlotte Marchina, Camille Fossier, and Nicolas Bureau

Leading anthropological theories characterize pastoralism as a relation of protective domination in which humans drive, protect, and feed their livestock and dispose of its life. On the basis of ethnographic fieldwork performed among six different husbandry systems throughout North Asia, we challenge this interpretation by showing that indigenous techniques tend to rely preferentially on animal autonomy and a herd’s capacity to feed and protect itself. In defining five modes of herding, in each of which the proportions of human and animal agencies differ, we explore the issue of the stability of the herder-livestock bond in a nomadic context with loose human intervention. Our argument is that the shared nomadic landscape is the common ground that enables a balance between animal autonomy and human-animal engagement in cooperative activities. We propose the notion of intermittent coexistence to describe the particular kind of human-animal relationship built and maintained in North Asian husbandry systems.

 

International Journal of Social Psychiatry

Community Families: Bridging the gap between mental health services and civil society – A qualitative study from users’ perspective

Ulla Væggemose, Stina Lou, Michal Frumer, Nanna Limskov Stærk Christiansen, Jørgen Aagaard, Lisbeth Ørtenblad

Social interventions to support people with severe mental illness are important to improving the quality of life. The perspectives of users are essential in this process. This article explores users’ experiences, investments and concerns of a befriending programme.

 

Social Science and Medicine

Tinkering toward departure: The limits of improvisation in rural Ethiopian biomedical practices

Stephanie Rieder

This paper explores Ethiopian physicians’ responses to tensions produced by gaps between ideals of biomedicine and realities of clinical practice in two rural Ethiopian hospitals. Physicians engage in creativity and improvisation, including relying on informal networks and practices and tinkering within diagnoses and procedures, to overcome constraints of lack of resources and limited opportunities to engage in “good medicine.” These courageous, but often unsuccessful attempts to mitigate professional and personal conflicts within their medical practices represent improvisation in impossible circumstances. This paper results from ethnographic research conducted in 2013–2014 and includes participant observations and qualitative interviews in two hospitals within the same community. The inherent conflicts among globalized standards, unpredictable transnational medical networks, and innovative practices produce tenuous clinical spaces and practices that rely on a mosaic of techniques and ad hoc connections. Tinkering and improvisation often fail to mediate these conflicts, contributing to physician disenchantment and departure from the community.

Water insecurity in a syndemic context: Understanding the psycho-emotional stress of water insecurity in Lesotho, Africa

Cassandra L. Workman, Heather Ureksoy

This paper is a response to the call for a renewed focus on measuring the psycho-emotional and psychosocial effects of food insecurity and water insecurity. Using a mixed-method approach of qualitative interviews and quantitative assessment, including a household demographic, illness, and water insecurity scale, the Household Food Insecurity Access Scale, and the Hopkins Symptoms Checklist-25, this research explored the psycho-emotional effects of water insecurity, food insecurity, and household illness on women and men residing in three low-land districts in Lesotho (n = 75). Conducted between February and November of 2011, this exploratory study first examined the complicated interaction of water insecurity, food insecurity and illness to understand and quantify the relationship between these co-occurring stresses in the context of HIV/AIDS. Second, it sought to separate the role of water insecurity in predicting psycho-emotional stress from other factors, such as food insecurity and household illness. When asked directly about water, qualitative research revealed water availability, access, usage amount, and perceived water cleanliness as important dimensions of water insecurity, creating stress in respondents’ daily lives. Qualitative and quantitative data show that water insecurity, food insecurity and changing household demographics, likely resulting from the HIV/AIDS epidemic, are all associated with increased anxiety and depression, and support the conclusion that water insecurity is a critical syndemic dimension in Lesotho. Together, these data provide compelling evidence of the psycho-emotional burden of water insecurity.

 

Social Studies of Science

The problem of epistemic jurisdiction in global governance: The case of sustainability standards for biofuels

David E Winickoff, Matthieu Mondou

While there is ample scholarly work on regulatory science within the state, or single-sited global institutions, there is less on its operation within complex modes of global governance that are decentered, overlapping, multi-sectorial and multi-leveled. Using a co-productionist framework, this study identifies ‘epistemic jurisdiction’ – the power to produce or warrant technical knowledge for a given political community, topical arena or geographical territory – as a central problem for regulatory science in complex governance. We explore these dynamics in the arena of global sustainability standards for biofuels. We select three institutional fora as sites of inquiry: the European Union’s Renewable Energy Directive, the Roundtable on Sustainable Biomaterials, and the International Organization for Standardization. These cases allow us to analyze how the co-production of sustainability science responds to problems of epistemic jurisdiction in the global regulatory order. First, different problems of epistemic jurisdiction beset different standard-setting bodies, and these problems shape both the content of regulatory science and the procedures designed to make it authoritative. Second, in order to produce global regulatory science, technical bodies must manage an array of conflicting imperatives – including scientific virtue, due process and the need to recruit adoptees to perpetuate the standard. At different levels of governance, standard drafters struggle to balance loyalties to country, to company or constituency and to the larger project of internationalization. Confronted with these sometimes conflicting pressures, actors across the standards system quite self-consciously maneuver to build or retain authority for their forum through a combination of scientific adjustment and political negotiation. Third, the evidentiary demands of regulatory science in global administrative spaces are deeply affected by 1) a market for standards, in which firms and states can choose the cheapest sustainability certification, and 2) the international trade regime, in which the long shadow of WTO law exerts a powerful disciplining function.

From academic laboratory to the market: Disclosed and undisclosed narratives of commercialization

Adi Sapir, Amalya L Oliver

This paper examines how the Weizmann Institute of Science has been telling the story of the successful commercialization of a scientific invention, through its corporate communication channels, from the early 1970s to today. The paper aims to shed light on the transformation processes by which intellectual-property-based commercialization activities have become widely institutionalized in universities all over the world, and on the complexities, ambiguities and tensions surrounding this transition. We look at the story of the scientific invention of Copolymer-1 at the Weizmann Institute of Science and its licensing to Teva Pharmaceutical Industries, which subsequently developed the highly successful drug Copaxone for the treatment of multiple sclerosis. We argue that, in its tellings and retellings of the story of Copolymer-1, the Weizmann Institute has created narratives that serve to legitimize the institution of academic patenting in Israel.

Extra-terra incognita: Martian maps in the digital age

Lisa Messeri

Science and technology studies (STS) and critical cartography are both asking questions about the ontological fixity of maps and other scientific objects. This paper examines how a group of NASA computer scientists who call themselves The Mapmakers conceptualizes and creates maps in service of different commitments. The maps under construction are those of alien Mars, produced through partnerships that NASA has established with Google and Microsoft. With the goal of bringing an experience of Mars to as many people as possible, these maps influence how we imagine our neighbouring planet. This paper analyzes two attributes of the map, evident in both its representation and the attending cartographic practices: a sense of Mars as dynamic and a desire for a democratic experience of Mars in which up-to-date Mars data can be intuitively accessed not only by scientists but by lay users as well. Whereas a democratic Mars promises users the ability to decide how to interact with the map and understand Mars, dynamic Mars imposes a more singular sense of Mars as a target of continued robotic and maybe even human exploration. Because maps of Mars have a different (and arguably less complex) set of social and political commitments than those of Earth, they help us see how different goals contradict and complement each other in matters of exploration and state-craft relevant both to other worlds and our own.

The Anthropo-scene: A guide for the perplexed

Jamie Lorimer

The scientific proposal that the Earth has entered a new epoch as a result of human activities – the Anthropocene – has catalysed a flurry of intellectual activity. I introduce and review the rich, inchoate and multi-disciplinary diversity of this Anthropo-scene. I identify five ways in which the concept of the Anthropocene has been mobilized: scientific question, intellectual zeitgeist, ideological provocation, new ontologies and science fiction. This typology offers an analytical framework for parsing this diversity, for understanding the interactions between different ways of thinking in the Anthropo-scene, and thus for comprehending elements of its particular and peculiar sociabilities. Here I deploy this framework to situate Earth Systems Science within the Anthropo-scene, exploring both the status afforded science in discussions of this new epoch, and the various ways in which the other means of engaging with the concept come to shape the conduct, content and politics of this scientific enquiry. In conclusion the paper reflects on the potential of the Anthropocene for new modes of academic praxis.

 

Social Theory & Health

Diagnosing dementia: Ethnography, interactional ethics and everyday moral reasoning

Alexandra Hillman

This article highlights the contribution of ethnography and qualitative sociology to the ethical challenges that frame the diagnosis of dementia. To illustrate this contribution, the paper draws on an ethnographic study of UK memory clinics carried out between 2012 and 2014. The ethnographic data, set alongside other studies and sociological theory, contest the promotion of a traditional view of autonomy; the limiting of the point of ethical interest to a distinct moment of diagnosis disclosure; and the failure to recognise risk and uncertainty in the building of clinical ‘facts’ and their communication. In addressing these specific concerns, this article contributes to the wider debate over the relationship between sociology and bioethics (medical ethics). At the heart of these debates lies more fundamental questions: how can we best understand and shape moral decision-making and ethics that guide behaviour in medical practice, and what should be the guiding ideas, concepts and methods to inform ethics in the clinic? Using the case of dementia diagnosis, this article illustrates the benefits of an ethnographic approach, not just for understanding this ethical problem but also for exploring if and how a more empirically informed ethics can help shape healthcare practices for the better.

 

Sociology of Health & Illness

Special Issue: Ageing, dementia and the social mind: past, present and future perspectives

Paul Higgs, Chris Gilleard

Accompanying the ageing of contemporary ageing societies is an increase in age associated morbidity, with dementia having an important impact. Mental frailty in later life is a source of fear for many and a major policy concern to all those concerned with health and welfare services. This introduction to the special issue on ‘Ageing, dementia and the social mind’ situates the selected papers within the context of debates about dementia and its social relations. In particular it draws attention to the importance of the social imaginary of the fourth age and what this means for the issue of personhood, care, social representations of dementia and its social contextualisation. The papers illuminating these themes draw on a variety of disciplines and approaches; from the social sciences to the humanities and from the theoretical to the empirical in order to help orientate future researchers to the complexities of dementia and the social and cultural matrix in which it exists. This paper provides an introduction to the potential for a more extended sociology of dementia; one which could combine the insights from medical sociology with the concerns of social gerontology.

Relational citizenship: supporting embodied selfhood and relationality in dementia care

Pia Kontos, Karen-Lee Miller, Alexis P. Kontos

Shifting dementia discourses from deficit to active citizenship

Linda Birt, Fiona Poland, Emese Csipke, Georgina Charlesworth

Narrative collisions, sociocultural pressures and dementia: the relational basis of personhood reconsidered

Edward Tolhurst, Bernhard Weicht, Paul Kingston

Power, empowerment, and person-centred care: using ethnography to examine the everyday practice of unregistered dementia care staff

Kezia Scales, Simon Bailey, Joanne Middleton, Justine Schneider

Institutionalising senile dementia in 19th-century Britain

Emily Stella Andrews

Dichotomising dementia: is there another way?

Patricia McParland, Fiona Kelly, Anthea Innes

When walking becomes wandering: representing the fear of the fourth age

Katherine Brittain, Cathrine Degnen, Grant Gibson, Claire Dickinson, Louise Robinson

 

Transcultural Psychiatry

“It comes down to just how human someone can be”: A Qualitative study with young people from refugee backgrounds about their experiences of Australian mental health services

Madeline C. Valibhoy, Ida Kaplan, Joseg Szwarc

While much literature documents the mental health needs of young people from refugee backgrounds, and the barriers they face in accessing mental health services, researchers have yet to document the perspectives of service users from this population about their contacts with clinicians and services. We therefore individually interviewed 16 young people (aged 18–25 years) who were refugees about their experiences of seeing mental health professionals. Participants were born in 9 different countries and had lived in Australia for an average of 5.2 years. They placed most emphasis on in-session factors, and particularly on interpersonal considerations. Among the main themes identified via thematic analysis were the practitioner’s sensitivity to the young person’s cultural background and to the stressors affecting him or her, including traumatic refugee experiences, and the therapeutic relationship—especially the qualities of trust, understanding, respect, and a caring connection. The participants had diverse reactions to treatment strategies. They emphasised the role of their preconceptions around mental health services, and called for systematic mental health awareness-raising for young people from refugee backgrounds. Implications for research, policy, and practice are discussed with a focus on findings that may guide efforts to improve service acceptability, accessibility, and effectiveness. In particular, there is a need for practitioners to attend to their clients’ experiences of sessions, to adopt an attuned, contextualised, systemic approach, and especially to take a nuanced approach to cultural sensitivity.

Local terms and understandings of mental health problems in Burundi

Pacifique Irankunda, Laurie Heatherington, Jessica Fitts

A pilot study and two intensive studies were conducted to document the local vocabularies used by Burundians to describe mental health problems and their understandings about the causes. The pilot study—in which 14 different large groups of community members awaiting appointments at a village health clinic were engaged in open-ended discussions of the local terminology and causal beliefs about mental health problems—suggested three key syndromes: akabonge (a set of depression-like symptoms), guhahamuka (a set of trauma-related symptoms), and ibisigo (a set of psychosis-like symptoms). In Study 1 (N = 542), individual interviews or surveys presented participants with the names of these syndromes and asked what they considered to be the symptoms and causes of them. Study 2 (N = 143) cross-validated these terms with a different sample (also in individual interviews/surveys), by presenting the symptom clusters and asking what each would be called and about their causes. Findings of both studies validated this set of terms and yielded a rich body of data about causal beliefs. The influence of education level and gender on familiarity with these terms was also assessed. Implications for the development of mental health services and directions for future research are discussed.

Pastoral care of mental illness and the accommodation of African Christian beliefs and practices by UK clergy

Gerard Leavey Kate Loewenthal Michael King

Faith-based organisations, especially those related to specific ethnic or migrant groups, are increasingly viewed by secular Western government agencies as potential collaborators in community health and welfare programmes. Although clergy are often called upon to provide mental health pastoral care, their response to such problems remains relatively unexamined. This paper examines how clergy working in multiethnic settings do not always have the answers that people want, or perhaps need, to problems of misfortune and suffering. In the UK these barriers can be attributed, generally, to a lack of training on mental health problems and minimal collaboration with health services. The current paper attempts to highlight the dilemmas of the established churches’ involvement in mental health care in the context of diversity. We explore the inability of established churches to accommodate African and other spiritual beliefs and practices related to the etiology and treatment of mental health problems.

The lived experience of paroled offenders with fetal alcohol spectrum disorder and comorbid psychiatric disorder

Caroline L. Tait Mansfield Mela Garth Boothman Melissa A. Stoops

This case study presents the life history and postincarceration experiences of two forensic psychiatric patients diagnosed with comorbid mental illness and fetal alcohol spectrum disorder (FASD). The men first met in prison and a few years after their release became roommates at the suggestion of their community support worker and parole officer. With shared and coordinated clinical and mentorship supports, the men were able to establish stability in their lives and manage their mental illness. However, changes in support and gaps within the continuum of care contributed to a sudden breakdown in their stability. The life history and experiences of the two men illustrate the importance in establishing and maintaining positive social networks and coordinated supports for the postincarceration success of offenders living with FASD and comorbid mental illness. The findings highlight areas of patient and system vulnerability that should be addressed to reduce recidivism and strengthen the stability in the lives of these individuals.

Web Roundup: If it Ledes, it Bleeds by Emily Goldsher-Diamond

28 février 2017 - 3:13pm

This contemporary moment begs the question: what is a fact? And how do facts circulate? These questions are historical cornerstones in the study of the production of knowledge, and scaffold work in disciplines from philosophy to anthropology; however, in a post-truth climate asking after the genesis and dissemination of facts takes on a new and curious significance. The production and transmission of facts also engages new questions: where and how do people discover facts? What is the relationship between a fact and its reader? What is a fact’s effect?

The following will briefly think on the complexities of the fact as it has been thrown about in the past month, with special attention to the media (as a vector for transmission, a group of people and an object of study) that specializes in the production and dissemination of certain kinds of facts. These are stories about stories, about knowledge and power, and about the particular leakiness of information–if it ledes (a word for the opening text of an article) it is safe to say that it will likely bleed far from its initial and intended context. It is worth reflecting on what happens when a fact–a category already up for grabs–bleeds?

Harvard recently hosted an event entitled, “The Future of News: Journalism in a Post-Truth Era.” Earlier this month, the Harvard Gazette posted a comprehensive report on the meeting that convened reporters and thinkers from major outlets to weigh in on truth, facts and the media. The talks on “post-factualism” bridge the erosion of public trust in the media, what it means to be a reliable source, the notion of coastal elites and thinking carefully about language. Does being post-fact necessarily mean fake? At NPR, George Lakoff seems to be drawing some important distinctions while pointing out what is at stake when we say news is fake.  It is also worth asking, of course, whether the unity of the fact as a category is a human issue or a data issue. 

Some specific and likely dire consequences of the shakeup of facts and their circulation can be seen in the realm of ecology and health. If we are post-truth, the LA Times asks, what will happen to the environment? In her op-ed, Barnett writes: “Regardless of alternative facts, fake news or scientific censorship, nature tells the truth.”  The Atlantic has an illuminating interview with climate scientist Andrew Weaver on turning to politics. As a member of Canadian parliament, he has some choice words about the importance of bridging science and politics in the face of climate change. Weaver says, “in science, the person with the best evidence wins. I think the public is ready for a more bottom-up, evidence-based approach to decision-making.” If climate deniers are indeed here to stay, how will the future take shape? Maybe the Lake Oroville near-disaster is a case study in what happens “when we manage society for how things were, not how things are.”

Over at The Hill, writers explore some troubling reporting from the International Agency for Research on Cancer. What does it mean when a tangle of private and government interest and public health communication goes haywire? And how do our standards for truth in risk reporting take shape? What if our demand for a certain kind of factual narrative gets in the way of actual facts? At Vice, Leyla Mei cuts down the Patient Zero myth. Perhaps sounding the alarm isn’t always the best strategy either–what if a lede bleeds out? These are debates to watch. 

There are grave human costs to the shifting ontology of facts and truth that we must continue to track. Over at Savage Minds, Nadia El-Shaarawi breaks down some of what it means when we talk about “extreme vetting” and refugees. Her piece takes on the threatening figure of the refugee that continues to persist despite (or even because of) contradictory evidence.

More links of interest:

“What We’re Fighting For” – The New York Times

“Sara Hendren: The Body Adaptive” – Guernica

“3D-Printed Prosthetic Limbs: the Next Revolution in Medicine” – The Guardian

“Do Cyborgs Have Politics?” – PaxSolaria

“Engagements with Ethnographic Care” – AnthropologyNews

“The (Anthropological) Truth About Walls” – Scientific American

Biofinance: Speculation, Risk, Debt, and Value from Bios: A conference report by Danya Glabau

27 février 2017 - 5:00pm

How does the financialization of life itself figure as a new means of producing value in modern technoscience? That is the question that motivated Kirk Fiereck to convene the panel “Biofinance: Speculation, Risk, Debt, and Value from Bios” at the 2016 American Anthropological Association meeting in Minneapolis, Minnesota this November. Fiereck, panelists Melina Sherman, Danya Glabau, and Emily Xi Lin, discussant Kristin Peterson, and chair David Pederson, offered new ways to think about how financialized life is a source of value, and what this means for the ethics and practice of biomedicine in sites throughout the globe.

In writing this conference report, Fiereck, Sherman, and Glabau each contributed short comments about their talks, which were edited together in the unified first half of this report. The second half includes further reflections that we have attributed to each scholar individually as a way to illustrate the diverse, possibly divergent, uses of “biofinance” as a concept.

 

The Papers

Melina Sherman opened the panel with, “Biofinancial Investments and Disinvestments: Examining the U.S. Opioid Epidemic,” which focused on the cultural and institutional construction of pharmaceutical markets – in particular, the market for prescription painkillers. Markets, especially those situated within the bioeconomy – an economic space in which capital is organized through life (bios) in its various forms – constitute the broader context in which biofinancial practices are situated. Her paper explored the ways in which the selective investments and divestments of federal regulators and opioid consumers condition the growth of this market. The market for prescription opioids is a good example of what Sherman calls an “addiction market” (see also Lovell, 2006), where addiction (understood as a destructive attachment – in this case, of a person to a prescription drug) is built-in to the cultural and economic processes that drive market formation and growth.

Biofinance plays a crucial role in shaping the dynamics of addiction markets – namely through the biofinancial practice of investing in domains where life is valued, manufactured, bought, and sold. The ongoing opioid epidemic, as Sherman showed, is framed by biofinancial investments. These include the U.S. Food and Drug Administration’s investment in new pharmaceutical technologies as a means of regulatory intervention and the risk-hedging practices of opioid consumers that continually reinforce their relationship to the prescription opioid market. These activities contribute to the expansion of the market for prescription opioids and condition the formation (and perhaps also the prolongation) of the ongoing opioid “epidemic.”

Danya Glabau’s talk, titled “Pricing the EpiPen: Financial Returns and the Care Thesis of Biomedicine,” offered an example of how pharmaceutical company pricing strategies support the valuation of pharmaceutical companies while potentially limiting access to necessary medications in the United States. In the third week of August this year, news broke in the American media that the EpiPen epinephrine auto-injector, branded and sold by Mylan Pharmaceuticals, had increased over 400% in price since 2007. Patients with insurance found themselves on the hook for growing out of pocket costs as insurers covered smaller portions of the cost and limited refills, and patients without insurance made do with fewer or no devices based on their budgets. The news brought long-simmering discontent in the food allergy community about the price of this device – considered a necessary, life-saving treatment by patients, caretakers, doctors, and policy makers alike – into the public eye. This episode is a crucial moment in what Glabau (2016) has called “the moral life of epinephrine”. It highlights the trade-offs people with food allergies must make between the moral obligation to do whatever is necessary to protect the at-risk lives of people with food allergies and the financially exploitive arrangements that govern who does and does not have access to biomedical care in the contemporary United States.

At stake in this controversy, as well as in other recent pricing controversies involving Turing Pharmaceuticals and Theranos, Inc., are questions about who deserves care, what counts as affordable care, and the possibilities for or limits of a pharmaceutical company’s responsibility to provide life-saving medications to its customers. The extending reach of financial actors, models, techniques, and practices – such as those that optimize pricing to optimize revenue – into the pharmaceutical industry have added new variables to the moral calculus of biomedical care.

Emily Xi Lin presented “Bio-financial Economy of Love and Risks: Examining Autism Care in China”, which opened up more intimate aspects of biofinance. Her paper demonstrated how the liberalization of the Chinese economy touches down in the lives of mothers raising autistic children. Paradoxically, as the economy booms, state investment in rural health services lags behind, requiring the mothers she observed to invest more time and affective labor into caring for their children. This dynamic of de- and hyper-investment appears to be part of a broader movement toward market-based healthcare, which individualizes health and sorts access to care infrastructures along the lines of gender, class, and region.

Kirk Fiereck closed the panel with his talk, titled “Pharmaceutical Derivatives: Hedging Risk, Producing Connectivity, Redistributing Debt.” He explored the curious kinships between two risk-hedging technologies: pharmaceutical prophylaxis and financial derivatives. These entities are not just commodities. Rather they are contract-commodities and are the most fundamental building blocks of emergent and increasingly dominant forms of circulation-based (as opposed to production-based) economies in late capitalist societies (on financial derivatives and capitalist cultures of circulation see, LiPuma and Lee 2004). Put more simply, these two special vehicles of exchange are similar to Marx’s commodity. Yet, as contract-commodities they radically differ from the commodity as they are a degree further abstracted from and abstracting of the social relations that commodities themselves express. Unlike commodities, which are produced through labor within cultures of capitalist production, these social forms are produced through calculations of abstract risk linked to certain commodities, not labor, within cultures of capitalist circulation.

To ground this exploration of pharmaceutical derivatives, Fiereck focused on the experiences and narratives of black gay South African men who were taking part in the Cape Town arm of a global clinical trial, which operated across four continents, six countries and eleven cities. The trial successfully determined the efficacy of repurposing HIV antiretroviral treatments as HIV prevention, which has become known as pre-exposure prophylaxis, or PrEP. He also compared the distributions of risk and health surpluses that have been produced in the wake of the PrEP rollouts that have resulted in uneven access through public health systems globally. Ultimately the analysis showed that biofinancial practices are much more widely distributed than previously imagined and that race and sexuality are being reinscribed as radically new forms of social difference in the context of biofinancial cultures. In particular, He traced the emergence of biofinancial logics were among some of the world’s most marginalized populations: namely black gay South African men who were taking part of the trial. This was compared to the racialized distribution of the PrEP intervention to affluent, and primarily white, populations through private health insurance schemes while the black gay men whose bodies authorized the efficacy data in South Africa still lacked access to PrEP in the national public health system.

 

Reflections

Melina Sherman: Each of the presentations that made up this panel attended to the ways in which bio-capital undergirds and hails the domain of public health. As theorized by Kaushik Sunder Rajan, biocapital “asks the question of how life gets redefined through the contradictory processes of commodification” (2006: 47). As a commodity, life is reconstituted as something that can be manufactured, distributed, purchased and consumed. Thus, we are encouraged to ask, borrowing from Nikolas Rose (2007), what are the effects of such a transformation of “life itself?”

In my work, the creation of “addiction markets” is one consequence of life’s commoditization within the bioeconomy. These markets, which form the context of biofinance, also frame the ongoing “opioid epidemic” and provide a lens for understanding the forces at work behind the skyrocketing rates of overdose deaths in the United States. For Lin, the commoditization of life itself means that some human relations – in particular, relations of love and care – become tethered to economic practices and market dynamics. In the case of autism care in China, the financialization of care-giving practices goes hand-in-hand with the social policing of certain parents and families, in particular those who may not be as financially equipped to invest in China’s increasingly costly economy of care. For Kirk, the commoditization of life prompts a reconsideration of the meaning of preventive interventions for HIV/AIDS, drugs which now take on the quality of risk-hedging instruments rather than merely medical treatments for disease. And finally, for Danya, bio-capital is what undergirds many of the practices and logics of pharmaceutical executives and thereby conditions the process of pharmaceutical drug development. In this context, the financialization of life includes not only investing in health but also creating health surpluses such that companies’ long-term investments continually ensure returns and secure their biofinancial futures.

Danya Glabau: The work of this panel as a whole extends existing analysis and critique of the complicity between finance, the state, and the pharmaceutical industry, questions central to the work of medical anthropologists Adriana Petryna (2004, 2009) Joseph Dumit (2012), Stefan Ecks (2008), Sharon Kaufman (2015), and Kristin Peterson (2014), among many others in anthropology and in sociology, STS, and history. Collectively, this constitutes an emphatic case that a fuller ethnographic understanding of biomedicine today and in the near future demands that medical anthropologists attend to the Wall Street-style financial logics that increasingly power its productivity. This is, of course, no simple task. I believe it requires, as Janet Roitman (2014) asserts, self-reflection within our field about the kinds of expertise that anthropologists must acquire as part of our scholarly practice. We might all need to become investment bankers or CEOs or entrepreneurs for a time to be able to apprehend the full meaning of “risk” as a financial object, practice, and concept that shapes which medical interventions do or do not make it into clinical trials, what forces map out their lives as marketed products, and how they do or do not reinforce patterns of uneven access to care.

Since the panel, I have also been thinking about the three words scholars now have to describe closely related ways of understanding the relationship between capital and biotechnoscience: biocapital (Sunder Rajan 2006), bioeconomy (Cooper and Waldby 2014, Birch 2016), and, now, biofinance. Out of these three, biofinance is the most verb-y, as “finance” on its own is both a noun and a verb. That excites my ethnographic instincts because it suggests a focus on material-semiotic practices and techniques, rather than on idealized schematics and structures. If biofinance is something we can conceive of as always-in-practice and always-in-formation, up and down scales of space, volume, and complexity, it suggests to me that ethics and politics can remain central to the program. Where people do things, they also think about doing things and do things in relation with and to other actors. In action and relation are opportunities for the economies and dependencies of the bioeconomy, or of biocapital, to be reconfigured otherwise.

Understanding the investment practices of pharmaceutical companies, for example, might give better leverage on regulating the financial industry or on professional organizations’ codes of ethics. Detailed stories about the conflicts inherent in doing medical research at a university today make a strong case for beefing up public funding of medical research. The speculative practices of opioid users, mothers of autistic children, or “MSM” suggest better ways to arrange public health interventions. My hope for biofinance research, then, is the hope that it can be a platform for informed intervention in the ethics and practices of biotechnoscience where it affects the lives of real patients – a tall order indeed.

Kirk Fiereck: In organizing this panel, a primary goal was to juxtapose a diverse set of ethnographic dispatches that were documenting global trends in pharmaceutical prophylaxis in conceptually, materially, geographically, temporally and affectively far-flung locales. In retrospect, the richness of the ethnographic accounts were both fortuitous as well as formidable test cases for the elasticity of a paradigm I refer to as biofinance. Moreover, the papers demonstrated the irreducibility of biofinancial cultures to existing sociocultural paradigms of biocapital, which have been narrowly limited to contexts of industrial biocapital. When such analyses have focused on the financial aspects of biocaptial, they have limited their focus on elite actors, thus producing accounts of biofinancial cultures from only the most privileged of perspectives. What is more, these analyses have inadvertently fetishized biofinancial social forms of contract-commodity, property (risk profile), and value (risk data) as merely industrial social forms of commodity, property (in things, or rights to things), and value (capital).

The context of both Sherman’s “addiction markets” and my exploration of “pharmaceutical derivatives” departs from, yet compliments, existing sociocultural analyses of biocapital (Sunder Rajan 2006) and the bioeconomy (Cooper and Waldby 2014, Birch 2016). More to the point, our analyses, “question the relevance of placing the large, manufacturing firm at the center of analysis” (van der Zwan 2014: 120). It is clearly the aggregation of smaller scale, democratized, and decentralized social actors who are best thought of as human capital that have heretofore been ignored in the bioeconomy literature. Put simply, pharmaceutical derivatives are increasingly used like financial derivatives, by a vast range of actors across various social hierarchies (e.g., class, race, gender, sexuality, nationality, etc), when they are used to treat abstract biomedical risks and not disease. Such democratization disrupts the traditional industrial (bio)capitalist antinomies of class that pit labor and capital against one another. Across all of the presentations, such polar distinctions implode when biofinancial subjects are clearly both, particularly given the figure of human capital that is a central subjective player in cultures of biofinance.

 

Works Cited

Birch, Kean. 2016. “Rethinking Value in the Bio-Economy: Finance, Assetization, and the Management of Value.” Science, Technology, & Human Values: 1–31. doi:10.1177/0162243916661633.

Cooper, Melinda, and Catherine Waldby. 2014. Clinical Labor: Tissue Donors and Research Subjects in the Global Bioeconomy. Durham and London: Duke University Press.

Dumit, Joseph. 2012. Drugs for Life: How Pharmaceutical Companies Define Our Health. Durham: Duke University Press.

Ecks, Stefan. 2008. “Global Pharmaceutical Markets and Corporate Citizenship: The Case of Novartis’ Anti-Cancer Drug Glivec.” BioSocieties 3 (2): 165–181. doi:10.1017/S1745855208006091.

Glabau, Danya. 2016. “The Moral Life of Epinephrine in the United States.” Medicine Anthropology Theory 3 (3): 1–22.

Kaufman, Sharon. 2015. Ordinary Medicine: Extraordinary Treatments, Longer Lives, and Where to Draw the Line. Durham, NC: Duke University Press.

LiPuma, Edward and Benjamin Lee. 2004. Financial Derivatives and the Globalization of Risk. Durham and London: Duke University Press

Lovell, A. M. (2006). Addiction markets: The case of high-dose buprenorphine in France. In Global pharmaceuticals: Ethics, markets, practices (pp. 136–170). Durham, NC: Duke University Press.

Peterson, Kristin. 2014. Speculative Markets: Drug Circuits and Derivative Life in Nigeria. Durham: Duke University Press.

Petryna, Adriana. 2004. “Biological Citizenship: The Science and Politics of Chernobyl-Exposed Populations.” Osiris 19 (January): 250–65.

Petryna, Adriana. 2009. When Experiments Travel: Clinical Trials and the Global Search for Human Subjects. Princeton: Princeton University Press.

Roitman, Janet. 2014. Anti-Crisis. Durham and London: Duke University Press.

Rose, Nikolas. 2006. The Politics of Life Itself: Biomedicine, Power, and Subjectivity in the Twenty-First Century. Princeton, NJ: Princeton University Press.

Sunder Rajan, Kaushik. 2006. Biocapital: The Constitution of Postgenomic Life. Durham: Duke University Press.

van der Zwan. 2014. “Making Sense of Financialization.” Socio-Economic Review 12: 99-129.

 

Kirk Fiereck is a medical anthropologist specializing in economic and queer anthropology in South Africa. He is currently working on two ethnographic projects. The first is on “Ethnointimacies.” It explores the entwinement of ethnicity and sexuality when LGBTQ and gender nonconforming South Africans draw upon customary, constitutional, as well as biomedical sex/gender ideologies to enact hybrid forms of queer personhood. They do so by juxtaposing multiple sexual and gender identities across overlapping cultural contexts. The second project is on “Biofinance,” and explores how these experiences are largely effaced by biomedical interventions based on new sexual risk-hedging technologies, such as pre-exposure prophylaxis (PrEP), hormone therapies, and plan-B. These pharmaceuticals enable practices that mirror the trading of financial derivatives whereby subjects are compelled to speculatively treat (or hedge) risk instead of disease. This second project aims to understand how categories of social difference such as class, race, ethnicity, gender, and sexuality are being reinscribed in the face of changing forms of value production, property, wealth, and risk. It also concentrates on new global forms of sociality that are being produced through biofinancialized calculations of abstract risk in the context of global experimental apparatuses, such as the global clinical trial. These trials are supra-national and work to subsume and efface local cultural forms within the circulation of cosmopolitical categories such as “MSM” and “transgender.”

Melina Sherman is a doctoral candidate at the Annenberg School for Communication and Journalism at the University of Southern California. She is currently writing her dissertation about the cultural and institutional conditions underpinning the ongoing ‘opioid epidemic’ in the United States. Her research areas of interest include medical anthropology, STS, biopolitics, risk, pharmaceutical markets, and the reciprocal relationship between culture and economics.

Danya Glabau is Core Faculty at the Brooklyn Institute for Social Research, where she teaches courses on STS and anthropology. She received her PhD in Science and Technology Studies (STS) and a B.A. in Biological Sciences from Cornell University. Her work on medicine in the United States blends STS and Medical Anthropology to investigate how morality, political economy, and patient experience influences what counts as “good” health care in the United States. Her dissertation and first book project examines these issues in the context of the politics of food allergy in the United States. She is now pursuing new research on the financialization of biomedical research and collaborating on PIP (Practically In Person), an exhibition that explores how women artists and feminist theory can shape the development of virtual reality technologies.

Book Forum — Nayanika Mookherjee’s The Spectral Wound: Sexual Violence, Public Memories, and the Bangladesh War of 1971 by Todd Meyers

11 février 2017 - 12:00pm

 

Andrew Brandel has organized an extraordinary and diverse set of commentaries on Nayanika Mookherjee’s The Spectral Wound: Sexual Violence, Public Memories, and the Bangladesh War of 1971 (Duke University Press, 2015). Each intervention is a path that moves outward from Mookherjee’s remarkable study, finding ways through the brambles of memory and history. We hope you enjoy. — Todd Meyers, Associate Editor

 

Introduction: The Violence of Life and Its Images
Andrew Brandel (editor)
Institute for Human Sciences, Vienna

Interiorities of Memory
Swayam Bagaria
Johns Hopkins University

Communicating Violence: Reviewing The Spectral Wound
Jennifer L. Culbert
Johns Hopkins University

The Performance of Public Secrets in The Spectral Wound
Amrita Ibrahim
Georgetown University

On Counting
Naveeda Khan
Johns Hopkins University 

Time of the Writing, the Hour of Reading
Naeem Mohaiemen
Columbia University

The Grains of Experience
Veena Das
Johns Hopkins University

 

The Spectral Wound and its fine grains of experiences: A Reply

Nayanika Mookherjee
Durham University 

 

For more, Nayanika Mookherjee recently talked with BBC Radio 4. The link can be found here

Download the PDF of this book forum:

Special Issues! The Publics of Public Health in Africa | Anthropological Interrogations of Evidence-Based Global Health by Anna Zogas

3 février 2017 - 3:00pm

I’d like to highlight a pair of Special Sections in the early 2017 issues of Critical Public Health. The first is “The Publics of Public Health in Africa,” guest edited by Ann H. Kelly, Hayley MacGregor, and Catherine M. Montgomery. The second is “Anthropological Interrogations of Evidence-Based Global Health,” guest edited by Elsa L. Fan and Elanah Uretsky. Here are the abstracts for the articles in both sections!

 

The Publics of Public Health in Africa 

The publics of public health in Africa (open access)
Ann H. Kelly, Hayley MacGregor & Catherine M. Montgomery

Excerpt: How do we understand the public character of public health in contemporary Africa? What are the parameters of community engagement in health care delivery, medical research and disease control programmes? To what extent is public health in Africa a project led by African Governments? Through what political processes and deliberative practices can African publics influence the priorities of research in health sciences and interventions which aim in broad terms to improve the health of such publics? Drawing insight from empirical research conducted with African scientists, nurses, community members, clinical trialists and policy-makers, this special section examines the multiple ways in which the publiccomes into being around public health provisioning and investigation in sub-Saharan Africa, its role and political reach. Collectively, these papers show how contestation and negotiation around different ideas about who the public is and what being public means can lead to the emergence of conflicting understandings, with implications for who and what is seen to represent the public interest, and for the acceptance of research and other interventions.

Communitarian societies and public engagement in public health
Morenike Oluwatoyin Folayan & Bridget Haire

For effective public health interventions in communitarian societies, public engagement must reflect cultural values that focus on preserving collectives, rather than individuals. The case of the Ebola epidemic in West Africa is used to reflect on the drivers and consequences of failure to incorporate local knowledge, local leaders and local ethical values in the adaption of programmes from elsewhere.

Comparison of social resistance to Ebola response in Sierra Leone and Guinea suggests explanations lie in political configurations not culture (open access)
Annie Wilkinson & James Fairhead

Sierra Leone and Guinea share broadly similar cultural worlds, straddling the societies of the Upper Guinea Coast with Islamic West Africa. There was, however, a notable difference in their reactions to the Ebola epidemic. As the epidemic spread in Guinea, acts of violent or everyday resistance to outbreak control measures repeatedly followed, undermining public health attempts to contain the crisis. In Sierra Leone, defiant resistance was rarer. Instead of looking to ‘culture’ to explain patterns of social resistance (as was common in the media and in the discourse of responding public health authorities) a comparison between Sierra Leone and Guinea suggests that explanations lie in divergent political practice and lived experiences of the state. In particular the structures of state authority through which the national epidemic response were organised integrated very differently with trusted institutions in each country. Predicting and addressing social responses to epidemic control measures should assess such political-trust configurations when planning interventions.

Nurses’ perceptions of universal health coverage and its implications for the Kenyan health sector
Adam D. Koon, Lahra Smith, David Ndetei, Victoria Mutiso & Emily Mendenhall

Universal health coverage, comprehensive access to affordable and quality health services, is a key component of the newly adopted 2015 Sustainable Development Goals. Prior to the UN resolution, several countries began incorporating elements of universal health coverage into their domestic policy arenas. In 2013, the newly elected President of Kenya announced initiatives aimed at moving towards universal health coverage, which have proven to be controversial. Little is known about how frontline workers, increasingly politically active and responsible for executing these mandates, view these changes. To understand more about how actors make sense of universal health coverage policies, we conducted an interpretive policy analysis using well-established methods from critical policy studies. This study utilized in-depth semi-structured interviews from a cross section of 60 nurses in three health facilities (public and private) in Kenya. Nurses were found to be largely unfamiliar with universal health coverage and interpreted it in myriad ways. One policy in particular, free maternal health care, was interpreted positively in theory and negatively in practice. Nurses often relied on symbolic language to express powerlessness in the wake of significant health systems reform. Study participants linked many of these frustrations to disorganization in the health sector as well as the changing political landscape in Kenya. These interpretations provide insight into charged policy positions held by frontline workers that threaten to interrupt service delivery and undermine the movement towards universal health coverage in Kenya.

‘$100 Is Not Much To You’: Open Science and neglected accessibilities for scientific research in Africa
Louise Bezuidenhout, Ann H. Kelly, Sabina Leonelli & Brian Rappert

The Open Science (OS) movement promises nothing less than a revolution in the availability of scientific knowledge around the globe. By removing barriers to online data and encouraging publication in Open Access formats and Open Data archives, OS seeks to expand the role, reach and value of research. The promises of OS imply a set of expectations about what different publics hope to gain from research, how accountability and participation can be enhanced, and what makes science public in the first place. This paper presents empirical material from fieldwork undertaken in (bio)chemistry laboratories in Kenya and South Africa to examine the extent to which these ideals can be realized in a sub-Saharan context. To analyse the challenges African researchers face in making use of freely available data, we draw from Amartya Sen’s Capabilities Approach. His theorisations of ‘conversion factors’ helps to understand how seemingly minor economic and social contingencies can hamper the production and (re-)use of online data. In contrast to initiatives that seek to make more data available, we suggest the need to facilitate a more egalitarian engagement with online data resources.

From ‘trial community’ to ‘experimental publics’: how clinical research shapes public participation
Catherine M. Montgomery & Robert Pool

In relation to clinical trials, it is far more usual to speak of the community (singular, static) than of publics (multiple, emergent). Rarely defined, the community is commonly taken to be the existing people in a given area, which the trial will engage, mobilise or sensitise to facilitate successful recruitment and retention. Communities are assumed to pre-exist the research, to be timeless, and to be a whole (sometimes consisting of different parts, referred to as stakeholder groups). In this paper, we suggest a conceptual shift from ‘trial community’ to ‘experimental publics’. Using an empirical case study of an HIV prevention trial in Zambia, we draw out the following key points: firstly, publics do not pre-exist research activities but are enacted in concert with them. Secondly, publics are dynamic and transient. And thirdly, experimental publics are situated at the intersection of various forms of inclusion and exclusion, both locally and globally. Our findings emphasise the need to create long-term forms of participation in science, which transcend both the instrumental goals and the individual timelines of specific trials.

 

Anthropological Interrogations of Evidence-Based Global Health

In search of results: anthropological interrogations of evidence-based global health (open access)
Elsa L. Fan & Elanah Uretsky

Excerpt: This special section brings together a collection of papers that interrogate evidence itself as an object of inquiry and examines how different forms of evidence are produced, negotiated, and valued across a range of health contexts. In unpacking evidence and the practices implicated in its production, these papers explore the health interventions mobilized in global health from within the positivist methods that dominate its discourse, attending specifically to the blind spots that sometimes emerge from the limited purview of what is recognized as evidence. In particular, all the papers foreground the business rationalities, measurement technologies, funding structures, and regime of actors and agendas that distinguish global health from its predecessor international health (see Brown, Cueto, & Fee, 2006) and its counterpart public health, both of which are bound by national governance and financing. Our papers thus aim to unravel that ‘obscure object of global health’ (Fassin, 2012) that seems to be less about the spatial and geographic boundaries that determine health and more about the financial and political arrangements through which health practices (and inequalities) are configured. The primary concern is often who is setting the standards for measuring health and how these forms of knowledge circulate in ways that shape the health outcomes themselves.

Our papers aim to interrogate the processes that guide this new practice of global health, thus highlighting the ‘perceptual deficits’ (Biehl & Petryna, 2013, p. 5) of paradigms that tend to occlude the complexities and contradictions of health issues in favor of standardized models that seek proof in the language of metrics. Collectively, these papers suggest that a view beyond the evidence reveals programs that struggle to reach their intended beneficiaries and goals, despite the fact that they find ways to demonstrate success.

“Guilty until proven innocent”: the contested use of maternal mortality indicators in global health (open access)
Katerini T. Storeng & Dominique P. Béhague

The MMR – maternal mortality ratio – has risen from obscurity to become a major global health indicator, even appearing as an indicator of progress towards the global Sustainable Development Goals. This has happened despite intractable challenges relating to the measurement of maternal mortality. Even after three decades of measurement innovation, maternal mortality data are widely presumed to be of poor quality, or, as one leading measurement expert has put it, ‘guilty until proven innocent’. This paper explores how and why leading epidemiologists, demographers and statisticians have devoted the better part of the last three decades to producing ever more sophisticated and expensive surveys and mathematical models of globally comparable MMR estimates. The development of better metrics is publicly justified by the need to know which interventions save lives and at what cost. We show, however, that measurement experts’ work has also been driven by the need to secure political priority for safe motherhood and by donors’ need to justify and monitor the results of investment flows. We explore the many effects and consequences of this measurement work, including the eclipsing of attention to strengthening much-needed national health information systems. We analyse this measurement work in relation to broader political and economic changes affecting the global health field, not least the incursion of neoliberal, business-oriented donors such as the World Bank and the Bill and Melinda Gates Foundation whose institutional structures have introduced new forms of administrative oversight and accountability that depend on indicators.

Making global health knowledge: documents, standards, and evidentiary sovereignty in HIV interventions in South India
Robert Lorway

This paper explores how an array of HIV epidemic responders became embroiled in producing quantitative evidence for HIV interventions in India. Based upon extensive ethnographic fieldwork in Karnataka State, I examine the life history of the Gates-funded AIDS initiative in India known as Avahan as a case study to consider the social and political implications of large-scale, standardizing knowledge regimes enacted in the era of global health. Specifically, I analyze a sample of the key material artifacts that are implicated in the production of standardized knowledge in an attempt to illuminate the workings of what I refer to as ‘evidentiary sovereignty’. I argue that documents, forms, and other paperwork used to generate evidence in global health interventions neither merely reflect expert knowledge nor convey information about scientific standards but, rather, are integral to the re-instantiation of sovereignty. The effects of evidentiary sovereignty not only narrow the aperture of global health interventions to overlook the on-the-ground realities that shape health problems, but they also transform the very ground upon which communities responding to HIV epidemics conceive of and enact politics. As highly HIV-affected communities struggle with the bureaucratic demands of intensive form-filling and query agreed upon standards and systems of classification, a form of politicization of knowledge unfurls that pertains to the documents themselves.

Multiple accountabilities: development cooperation, transparency, and the politics of unknowing in Tanzania’s health sector
Noelle Sullivan

Accountability and transparency are considered best practices within development cooperation frameworks characteristic of global health practice today. In this article, I ask: How do accountability and transparency work, and for whom? I develop three main arguments. Drawing on Geissler’s concept ‘unknowing,’ I first demonstrate that global health actors are aware, yet strategically obscure, the instabilities and problematics of data and indicators in Tanzania. Second, I suggest that multiple and contradictory forms of accountability are pursued by global health actors, while this multiplicity is often unspoken in order to render accountability frameworks legitimate to sustain the existing development cooperation system. Third, I argue that foreign and Tanzanian actors within the health sector perpetuate accountability and development cooperation frameworks which are neither cooperative, nor accountable to citizens and purported beneficiaries of aid, because doing so allows actors to pursue interests often unrelated to formal policy goals.

‘We can’t do that here’: negotiating evidence in HIV prevention campaigns in southwest China
Elanah Uretsky

Disease prevention and health care delivery, areas traditionally governed by the nation state and local communities, are increasingly being inhabited by ‘mobile sovereigns’ who carry a global currency of prevention strategies and treatments grounded in the universal standards of scientific evidence. Drawing on ethnographic evidence from research conducted on HIV in southwest China, this paper examines the impact of evidence-based science on the effectiveness of global health programming. It interrogates the intentions of global health partnerships and how the balance of power waged between those with money, science, and technical expertise, and those seeking assistance and resources, influences global health programming. Ultimately, the paper demonstrates the disconnect between the demand for a system of universal standards developed on the basis of scientific evidence and an appreciation for the local context, which shapes the way these standards should be modified for effective implementation of global health programs.

Counting results: performance-based financing and HIV testing among MSM in China
Elsa L. Fan 

In this paper, I examine the use of performance-based financing to scale-up HIV testing in men who have sex with men, or MSM, by global health initiatives in China. This mechanism, which ties financing directly to the achievement of targets and indicators, assures that measurable results are produced from health interventions and accounts for financial spending. On the one hand, its adoption into HIV programming in China articulates with broader shifts in global health that place currency on particular forms of evidence. At the same time, performance-based financing reshapes how HIV interventions are carried out and what counts in these programmes. The suturing of financing to outputs directs what gets counted and how, and as a consequence leads to the production of measurable results as an end in and of themselves. Based on 22 months of ethnographic research carried out in China, I explore the effects of this mechanism and, in doing so, ask what gets left out in the pursuit of evidence. In particular, I demonstrate how the demand for outputs undermines HIV prevention in MSM, thus risking the very lives these interventions are intended to save.

Web Roundup: Water by Lily Shapiro

1 février 2017 - 12:19pm

Before I began graduate school, I worked in water-related public health, and have continued to follow the news around water. This month, some stories (mostly) about water.

Trump signed an order last week to “expedite” the construction of the Dakota Access Pipeline, which jeopardizes the water source for the Standing Rock Sioux Reservation, and for many others who drink water from the Missouri River. Opponents of the pipeline are not surprised, and are gearing up for a fight. Although most of Silicon Valley has come out against Trump (though perhaps in somewhat tepid terms), particularly in light of his recent executive order on immigration, Peter Thiel has been tapped to help Trump pick someone to lead the FDA, with the goal of decreasing its regulations around drug approval process. Vox goes into detail about why that’s a bad idea. (And, before we move away from the topic of Trump’s horrifying first week in office, if you haven’t read CultAnth’s interview with prof of anthropology and lawyer Darryl Li on the travel ban, I recommend it).

California has recently gotten some much-needed rain (and snow) this month. Researchers and farmers there are experimenting with methods, which include flooding fields during the winter, to use this rain to recharge the depleted groundwater aquifers. Also, check out this time lapse of the California drought from 2011-present. The storms also toppled an iconic, if controversial, “drive-through” Sequoia tree, one of the last still standing in a public park.

Meanwhile, the state of Tamil Nadu, in South India, is experiencing its worst monsoon in nearly 150 years, a crisis worsened by the demonetization on November 9 (in which the Rupees 500 and 1000 notes were declared invalid), resulting in the deaths of numerous farmers and recent agitations by farmer’s groups. The state government has recently declared the state officially “drought-hit,” seeking assistance from the central government and offering aid to farmers, and compensation to the families of farmers who have died or committed suicide. Also off the coast of Tamil Nadu, two ships collided, causing an oil spill which is now washing up on Chennai’s Marina Beach.

A project out of Melbourne’s Monash University recently received USD 27 million in funding for a controlled trial testing innovative water infrastructure delivery in urban slum areas in Indonesia and Fiji. And The Guardian has an article about the complications of providing water to thousands of elephants in Hwange National Park in Zimbabwe, which has been hit by a drought.

Lead levels in water tested in Flint, Michigan, have now fallen below federal limits; however, because lead-tainted pipes have yet to be replaced, it is still not safe for residents to drink. 1700 residents have filed suit against the US Environmental Protection Agency for more than USD 722 million for its failure to protect residents from the toxic water. And, here’s an interesting, longish article about the unelected emergency managers who were running Flint at the time of the crisis, and how they contributed to it: Flint, Michigan’s water crisis: what the national media got wrong.

The NY Times has a piece on private equity firms taking over the water management of American municipalities, questioning the fairness in residents seeing their water rates rise while equity firms make returns. And yet, as the article also points out, the US water infrastructure is woefully in need of updating (something Trump has said he’ll address). Updates and improvements to infrastructure, along with other expenditures are to lead to an average increase of a substantial $49 over the next five years in monthly water bills in American households, according to new research out of Michigan State.

For some completely banal news, Vox has a piece on why La Croix sparkling water has suddenly became so trendy, which was probably only interesting for me, as a Wisconsinite who remembers my brother in California calling to excitedly tell me his grocery store now stocks it.

Speaking of Wisconsin, A2 milk (an older, supposedly healthier strain of milk which falls somewhere between health trend and health fad) will soon be available in the US. It is popular in Australia, and interestingly ties into debates and protests in Tamil Nadu about the recent ban (and its subsequent overturning) of a bull-taming sport called jallikattu, and its impact on indigenous cattle breeds.

 

 

Also check out this video by Tobias Gremmier “visualizing motion and music” with the London Symphony Orchestra, kind of like Fantasia for the 21st century.

The Internet is Mostly Bots – The Atlantic

The Moon May Be Covered With Oxygen Beamed From Earth – The Atlantic

A Lawyer Rewrote Instagram’s Privacy Policy in Plain English – Quartz

In the Journals – January 2017 by Anna Zogas

31 Janvier 2017 - 1:00pm

Welcome to a new year of Somatosphere’s In the Journals section! Here are some of the articles available in January 2017. Enjoy!

Medical Anthropology

Chronic Subjunctivity, or, How Physicians Use Diabetes and Insomnia to Manage Futures in the United States
Matthew Wolf-Meyer & Celina Callahan-Kapoor

Prognostication has become central to medical practice, offering clinicians and patients views of particular futures enabled by biomedical expertise and technologies. Drawing on research on diabetes care and sleep medicine in the United States, in this article we suggest that subjectivity is increasingly modeled on medical understandings of chronic illness. These chronic conceptions of the self and society instill in individuals an anxiety about future health outcomes that, in turn, motivate practices oriented at self-care to avoid negative health outcomes and particular medical futures. At its most extreme, these anxieties of self-care trouble conceptions of self and social belonging, particularly in the future tense, leading patients and clinicians to consider intergenerational and public health based on the threats that individual patients pose for others.

Decoding the Type 2 Diabetes Epidemic in Rural India (open access)
Matthew Little, Sally Humphries, Kirit Patel & Cate Dewey

Type 2 diabetes mellitus is an escalating public health problem in India, associated with genetic susceptibility, dietary shift, and rapid lifestyle changes. Historically a disease of the urban elite, quantitative studies have recently confirmed rising prevalence rates among marginalized populations in rural India. To analyze the role of cultural and sociopolitical factors in diabetes onset and management, we employed in-depth interviews and focus groups within a rural community of Tamil Nadu. The objectives of the study were to understand sources and extent of health knowledge, diabetes explanatory models, and the impact of illness on individual, social, and familial roles. Several cultural, socioeconomic, and political factors appear to contribute to diabetes in rural regions of India, highlighting the need to address structural inequities and empower individuals to pursue health and well-being on their own terms.

Indigenous Healing Knowledge and Infertility in Indonesia: Learning about Cultural Safety from Sasak Midwives
Linda Rae Bennett

In this article I demonstrate what can be learned from the indigenous healing knowledge and practices of traditional Sasak midwives on Lombok island in eastern Indonesia. I focus on the treatment of infertility, contrasting the differential experiences of Sasak women when they consult traditional midwives and biomedical doctors. Women’s and midwives’ perspectives provide critical insight into how cultural safety is both constituted and compromised in the context of reproductive health care. Core components of cultural safety embedded in the practices of traditional midwives include the treatment of women as embodied subjects rather than objectified bodies, and privileging physical contact as a healing modality. Cultural safety also encompasses respect for women’s privacy and bodily dignity, as well as two-way and narrative communication styles. Local understandings of cultural safety have great potential to improve the routine practices of doctors, particularly in relation to doctor–patient communication and protocols for conducting pelvic exams.

Local Biologies, Leaky Things, and the Chemical Infrastructure of Global Health
Alex M. Nading

This article examines how two chemical substances are woven into the infrastructure of global health as well as into the social lives of health workers in urban Nicaragua. One chemical is temephos, an organophosphate used to control mosquitoes. The other is chlorine-based products, which are used to disinfect surfaces and water. While global health projects tend to treat these substances as stable objects, there are three ways in which they might be understood as leaky things, implicated in fluid social interactions. First, global health chemicals are tracked through rigid accounting, but because of numerical leakages, they become vehicles for fashioning new forms of concern. Second, chemicals leak structurally: They can be dissolved and reproduced at a molecular level, although that dissolution is never absolute, and that reproduction is not everywhere the same. Third, chemicals leak in a sensory fashion. Sensory interactions with chemicals produce an entanglement of knowledge about bodies and environments.

Discourses on the Toxic Effects of Internal Chemical Contamination in Catalonia, Spain
Cristina Larrea-Killinger, Araceli Muñoz, Jaume Mascaró, Eva Zafra & Miquel Porta

Human exposure to and contamination by environmental toxic compounds generates discourses and practices that merit greater attention. In this article, we assess internal chemical contamination and the risk of toxic effects as an experience related to the production of meaning in everyday life. Drawing on the analysis of semantic networks of narratives from semi-structured interviews conducted with 43 informants in Catalonia, Spain, we consider participants’ perceptions of the health risks of toxic compounds, including social discourses on exposure, toxicity, and internal chemical contamination, and on responsibilities, consequences, and proposed strategies for controlling toxic compounds. Informants’ narratives on the relationships between nature and nurture suggest that they no longer perceive rigid boundaries separating the human body from the external environment and its chemical pollutants.

Blaming Machismo: How the Social Imaginary is Failing Men with HIV in Santa Cruz, Bolivia
Carina Heckert

Drawing from an ethnography of HIV care in Santa Cruz, Bolivia, in this article I explore how the social imaginary surrounding gender relations shapes men’s experiences of seeking care for and living with HIV. Popular understandings of gender relations, which draw heavily on the machismo concept, intersect with a global health master narrative that frames women as victims in the AIDS epidemic in a way that generates a strong sentiment of blaming machismo within local HIV/AIDS-related services. Statements such as, “it’s because of machismo” are used to explain away epidemiological trends. Participant observation in the context of HIV care, coupled with illness narrative interviews, illuminate how blaming machismo shapes men’s experiences of care and the ways that they feel excluded from various forms of support. Thus, the illness experiences of men with HIV problematize the machismo concept and how it is drawn upon in the context of care.

There is also a themed section of Medical Anthropology titled “Between Biopolitical Governance and Care: Rethinking Health, Self, and Social Welfare in East Asia.” See the abstracts here.

Health and Place

Negotiating and valuing spaces: The discourse of space and ‘home’ in care homes
Andrea Kenkmann, Fiona Poland, Diane Burns, Paula Hyde, Anne Killett 

This paper examines how space in care homes is experienced and negotiated by people who live and work in them. The analysis of qualitative data of five in-depth case studies of care homes in England revealed three key ways in which space is negotiated: a) the way in which values affect interactions inside versus outside the care home environment, b) the negotiation of boundaries and domains within the homes, and c) the sense of being at ‘home’. The paper illuminates how the design of the buildings and organisational factors can reinforce or bridge dichotomies between inside and outside spaces. Residents’ abilities to re-negotiate boundaries, domains and communal spaces within homes are shown to be affected by organisational factors such as priorities of staff members. Despite ‘home’ being a common discourse, the spaces within care homes were often organised, ordered and experienced as two distinct, co-present worlds: the dwelling place of residents and the workplace of staff.

Managing mosquito spaces: Citizen self-governance of disease vectors in a desert landscape
Nicolena vonHedemann, Paul Robbins, Melinda K. Butterworth, Katheryn Landau, Cory W. Morin

Public health agencies’ strategies to control disease vectors have increasingly included “soft” mosquito management programs that depend on citizen education and changing homeowner behaviors. In an effort to understand public responses to such campaigns, this research assesses the case of Tucson, Arizona, where West Nile virus presents a serious health risk and where management efforts have focused on public responsibility for mosquito control. Using surveys, interviews, and focus groups, we conclude that citizens have internalized responsibilities for mosquito management but also expect public management of parks and waterways while tending to reject the state’s interference with privately owned parcels. Resident preferences for individualized mosquito management hinge on the belief that mosquito-borne diseases are not a large threat, a pervasive distrust of state management, and a fear of the assumed use of aerial pesticides by state managers. Opinions on who is responsible for mosquitoes hinge on both perceptions of mosquito ecology and territorial boundaries, with implications for future disease outbreaks.

Health

The uses and implications of standards in general practice consultations (open access)
Maria Laura Lippert, Susanne Reventlow, Marius Brostrøm Kousgaard

Quality standards play an increasingly important role in primary care through their inscription in various technologies for improving professional practice. While ‘hard’ biomedical standards have been the most common and debated, current quality development initiatives increasingly seek to include standards for the ‘softer’ aspects of care. This article explores the consequences of both kinds of quality standards for chronic care consultations. The article presents findings from an explorative qualitative field study in Danish general practice where a standardized technology for quality development has been introduced. Data from semi-structured interviews and observations among 17 general practitioners were analysed using an iterative analytical approach, which served to identify important variations in the uses and impacts of the technology. The most pronounced impact of the technology was observed among general practitioners who strictly adhered to the procedural standards on the interactional aspects of care. Thus, when allowed to function as an overall frame for consultations, those standards supported adherence to general recommendations regarding which elements to be included in chronic disease consultations. However, at the same time, adherence to those standards was observed to narrow the focus of doctor–patient dialogues and to divert general practitioners’ attention from patients’ personal concerns. Similar consequences of quality standards have previously been framed as manifestations of an inherent conflict between principles of patient-centredness and formal biomedical quality standards. However, this study suggests that standards on the ‘softer’ aspects of care may just as well interfere with a clinical approach relying on situated and attentive interactions with patients.

Treating the binge or the (fat) body? Representations of fatness in a gold standard psychological treatment manual for binge eating disorder (open access)
Amy Brown-Bowers, Ashley Ward, Nicole Cormier

This article reports the results of a Foucauldian-informed discourse analysis exploring representations of fatness embedded within an empirically based psychological treatment manual for binge eating disorder, a condition characterized by overvaluation of weight and shape. Analyses indicate that the manual prioritizes weight loss with relatively less emphasis placed on treating the diagnostic symptoms and underlying mechanisms of binge eating disorder. We raise critical concerns about these observations and link our findings to mainstream psychology’s adoption of the medical framing of fatness as obesity within the “gold standard” approach to intervention. We recommend that psychology as a discipline abandons the weight loss imperative associated with binge eating disorder and fat bodies. We recommend that practitioners locate the problem of fat shame in society as opposed to the individual person’s body and provide individuals with tools to identify and resist fat stigma and oppression, rather than provide them with tools to reshape their bodies.

Understanding the health of lorry drivers in context: A critical discourse analysis (open access)
Nick Caddick, Veronica Varela-Mato, Myra A Nimmo, Stacey Clemes, Tom Yates, James A King

This article moves beyond previous attempts to understand health problems in the lives of professional lorry drivers by placing the study of drivers’ health in a wider social and cultural context. A combination of methods including focus groups, interviews and observations were used to collect data from a group of 24 lorry drivers working at a large transport company in the United Kingdom. Employing a critical discourse analysis, we identified the dominant discourses and subject positions shaping the formation of drivers’ health and lifestyle choices. This analysis was systematically combined with an exploration of the gendered ways in which an almost exclusively male workforce talked about health. Findings revealed that drivers were constituted within a neoliberal economic discourse, which is reflective of the broader social structure, and which partly restricted drivers’ opportunities for healthy living. Concurrently, drivers adopted the subject position of ‘average man’ as a way of defending their personal and masculine status in regards to health and to justify jettisoning approaches to healthy living that were deemed too extreme or irrational in the face of the constraints of their working lives. Suggestions for driver health promotion include refocusing on the social and cultural – rather than individual – underpinnings of driver health issues and a move away from moralistic approaches to health promotion.

Using liminality to understand mothers’ experiences of long-term breastfeeding: ‘Betwixt and between’, and ‘matter out of place’ (open access)
Sally Dowling, David Pontin

Breastmilk is widely considered as the optimum nutrition source for babies and an important factor in both improving public health and reducing health inequalities. Current international/national policy supports long-term breastfeeding. UK breastfeeding initiation rates are high but rapidly decline, and the numbers breastfeeding in the second year and beyond are unknown. This study used the concept of liminality to explore the experiences of a group of women breastfeeding long-term in the United Kingdom, building on Mahon-Daly and Andrews. Over 80 breastfeeding women were included within the study, which used micro-ethnographic methods (participant observation in breastfeeding support groups, face-to-face interviews and online asynchronous interviews via email). Findings about women’s experiences are congruent with the existing literature, although it is mostly dated and from outside the United Kingdom. Liminality was found to be useful in providing insight into women’s experiences of long-term breastfeeding in relation to both time and place. Understanding women’s experience of breastfeeding beyond current usual norms can be used to inform work with breastfeeding mothers and to encourage more women to breastfeed for longer.

What led health professionals to study and practise acupuncture in Spain? (open access)
Esther García-Escamilla, Beatriz Rodríguez-Martín Vicente Martínez-Vizcaíno

Acupuncture is the most widespread practice of Traditional Chinese Medicine in the Western world. This confers special relevance to the experiences and circumstances of life to explain the health-illness process. Recent research has reported an increasing interest of Western health professionals in its practice. The aim of this study was to map and understand the motivation of health professionals to study and practise acupuncture in Spain. A total of 27 in-depth interviews were conducted with Spanish health professionals trained in acupuncture. Participants were selected following a theoretical sampling. Grounded theory dimensional analysis guided this research in order to obtain a theoretical explanation of the motivations of health professionals to study and practise acupuncture. Their motivations were focused on six categories: humanisation of medicine, acquiring additional therapeutic resources, efficacy and far-reaching healing potential of acupuncture, attraction to acupuncture philosophy, external influences (other professionals and relevant sources of information) and work-related motivation. Our results show that health professionals were attracted to acupuncture because of the Traditional Chinese Medicine worldview (a philosophical approach) and therapeutic benefits of acupuncture (a practical approach). Acupuncture offers the possibility to improve the healthcare assistance by transcending the reification of human beings resulting from the pre-eminence of the biomedical paradigm and facilitating cooperation between disciplines. Participants consider acupuncture as a complete medicine, not merely as a technique, and highlight the importance of traditional Chinese concepts to practise it.

Critical Public Health 

Embodied, clinical and pharmaceutical uncertainty: people with HIV anticipate the feasibility of HIV treatment as prevention (TasP)
Peter Keogh

Evidence of the efficacy of HIV treatment as prevention (TasP) precipitated a highly optimistic global response and a radical redesign of HIV policy. Sociologists and others have framed TasP within promissory or enterprising discourses which require HIV prevention planners and people with HIV to engage in anticipatory assessments of risk and uncertainty. In 2013, I conducted focus groups with people with HIV in London, UK, to explore their understandings and anticipations of TasP. An environment of economic constraint obliged participants to triage clinical need and presentation, and they expressed scepticism about the sustainability of pharmaceutical investment in treatment innovation. These perceptions were informed by an embodied knowledge of HIV which implies a construction of health as a form of capital that is finite and must be conserved. This is contrasted with a biomedical construction of health as a form of capital that can be exponentially generated through investment. The imperative of conservation entailed by people with HIV’s anticipations contrasts with the speculative economy of biomedical production entailed in planners’ anticipations of TasP. Rather than researching ‘TasP acceptability’ and considering whether people with HIV’s behaviours constitute an obstacle to TasP’s effectiveness, we should recognise that people with HIV are already involved in shaping what TasP is, what it will be and ultimately how it ‘works’.

Young bisexual women’s perspectives on the relationship between bisexual stigma, mental health, and sexual health: a qualitative study
Corey E. Flanders, Cheryl Dobinson & Carmen Logie

Young bisexual women experience worse mental and sexual health outcomes in comparison to their heterosexual and lesbian peers. These disparities are associated with stigma and devaluation of bisexual identities. The current paper addresses a community-based focus group project in which participants discussed bisexual stigma in regard to bisexual erasure and other stereotypes. Specifically, participants detailed experiences of feeling pressured to provide evidence of their bisexual identity, modifying their relationship or sexual behavior to conform to these expectations, as well as feeling excluded from queer community. Further, participants discussed how these experiences were related to decreased mental and sexual health. Future research should further investigate the relationship between bisexual stigma, pressure to provide evidence of bisexual identity, and negative mental and sexual health outcomes.

‘I’m not sure if they speak to everyone about this option’: analyzing disparate access to and use of genetic health services in the US from the perspective of genetic counselors
Susan Markens

Much research has documented disparities in access to and uses of health care services in the US. With the rise of genomic medicine and its use of complex technology, some scholars are concerned that such inequalities of health care will not only continue but also grow. Drawing on 27 semi-structured interviews with front-line genetic workers – master’s-level genetic counselors – this qualitative study explores the factors they view as contributing to variable uptake of genetic health services among US population groups. Patient-centered factors such as attitudes, norms, and education were perceived by some genetic counselors as explanations for disparities in uptake of genetic services. However, genetic counselors more frequently discussed structural and institutional factors (e.g. cost, insurance, type and location of hospital/clinic, and/or staffing issues) when accounting for different rates of usage of genetic services among populations. The prominence of structural impediments to access found in genetic counselors’ narratives about population differences in the uptake of genetic services suggests that genetic medicine could exacerbate rather than ameliorate health disparities in the US.

A Feminist Quality Appraisal Tool: exposing gender bias and gender inequities in health research
Tessa Morgan, Lisa Ann Williams & Merryn Gott

Quality appraisal tools used in systematic reviews to evaluate health literature do not adequately address issues related to gender. This oversight is significant because disparities between genders have been identified as a major health equity concern, and systematic reviews are regarded as a powerful means for informing policy that could redress gender inequities. In this paper, we present our Feminist Quality Appraisal Tool that offers researchers a template to undertake a comprehensive gendered analysis of studies they review. Informed by a feminist perspective, the tool addresses issues of power, gender and inequity, thereby giving researchers the means to interrogate the scientific rigour of systematic reviews that focus on gender. Specifically, our tool outlines ways gender can be critically examined in terms of study design, data collection, analysis, discussion and recommendations. We argue that this tool has the potential to improve the provision of public health by providing solid understandings and critical reflections on the reasons why women continue to face barriers in their access to optimal health care.

Social Science & Medicine

Reconciling community-based Indigenous research and academic practices: Knowing principles is not always enough
Melody E. Morton Ninomiya, Nathaniel J. Pollock

Historically, Indigenous health research in Canada has failed to engage Indigenous peoples and communities as primary stakeholders of research evidence. Increasingly, research ethics and methodologies are being positioned as tools for Indigenous self-determination. In response, mainstream institutions have developed new ethical principles for research involving Indigenous people. While these transformations are necessary steps towards re-orienting research practices, they are not prescriptive. In this paper, we make visible three dilemmas from a case study in which Indigenous health research frameworks provided limited guidance or were unclear about how to balance community priorities with Indigenous research principles. We also discuss the strategies used to resolve each of these dilemmas. We draw examples from a project that examined the lived experiences of children and youth living with FASD and their caregivers. This project was conducted in collaboration with Sheshatshiu Innu First Nation, an Indigenous community in Labrador, Canada. In doing so, we argue that knowing the key guiding principles in Indigenous health research is not always enough, and that the ‘real-world’ context of practices and relationships can lead to conflicts that are not easily resolved with adherence to these principles.

Two approaches, one problem: Cultural constructions of type II diabetes in an indigenous community in Yucatán, Mexico
Sarah M. Frank, T. Elizabeth Durden

The emerging epidemic of obesity and type II diabetes in Mexico has recently propelled the nation into the public health spotlight. In the state of Yucatán, the experience of diabetes is greatly impacted by two cultural constructions of disease. In this setting, elements of Yucatec Mayan health practices as well as the biomedical model affect the approach to type II diabetes. Both frameworks offer unique understandings of the etiology of diabetes and recommend different ways to manage the condition. Based on in-depth and semi-structured interviews with both community members and clinicians, the present study seeks to understand how diabetes is understood and treated in indigenous settings in rural Yucatán. We explore the context in which community members navigate between locally available healthcare options, choose one over the other, or incorporate strategies from both into their diabetes care regimens. The tension between indigenous community members and their biomedical healthcare providers, the changing food environment of this community, and the persistence of traditional gender constructions affect the management of type II diabetes and its associated symptoms.

Public health and public trust: Survey evidence from the Ebola Virus Disease epidemic in Liberia
Robert A. Blair, Benjamin S. Morse, Lily L. Tsai

Trust in government has long been viewed as an important determinant of citizens’ compliance with public health policies, especially in times of crisis. Yet evidence on this relationship remains scarce, particularly in the developing world. We use results from a representative survey conducted during the 2014–15 Ebola Virus Disease (EVD) epidemic in Monrovia, Liberia to assess the relationship between trust in government and compliance with EVD control interventions. We find that respondents who expressed low trust in government were much less likely to take precautions against EVD in their homes, or to abide by government-mandated social distancing mechanisms designed to contain the spread of the virus. They were also much less likely to support potentially contentious control policies, such as “safe burial” of EVD-infected bodies. Contrary to stereotypes, we find no evidence that respondents who distrusted government were any more or less likely to understand EVD’s symptoms and transmission pathways. While only correlational, these results suggest that respondents who refused to comply may have done so not because they failed to understand how EVD is transmitted, but rather because they did not trust the capacity or integrity of government institutions to recommend precautions and implement policies to slow EVD’s spread. We also find that respondents who experienced hardships during the epidemic expressed less trust in government than those who did not, suggesting the possibility of a vicious cycle between distrust, non-compliance, hardships and further distrust. Finally, we find that respondents who trusted international non-governmental organizations (INGOs) were no more or less likely to support or comply with EVD control policies, suggesting that while INGOs can contribute in indispensable ways to crisis response, they cannot substitute for government institutions in the eyes of citizens. We conclude by discussing the implications of our findings for future public health crises.

Separating, replacing, intersecting: The influence of context on the construction of the medical-nursing boundary
Elisa Giulia Liberati

The distribution of work, knowledge, and responsibilities between doctors and nurses is a longstanding object of interest for medical sociologists. Whereas the strategies through which nurses and doctors construct their professional boundary have been thoroughly examined, little is known about why the regulation of the medical-nursing boundary varies across care settings. In the article, I argue that this gap in knowledge can be attributed to insufficient examination of the ‘negotiation context’, namely the features of the social and organisational environment that directly affect doctor-nurse boundary negotiations. Adopting a negotiated order perspective, and drawing data from a hospital ethnography, the article describes the different ways of constructing the medical-nursing boundary (separating, replacing, and intersecting) which were observed in three different care settings (a neurology ward, a neurosurgical ward, and an intensive care unit). Constant comparison of the observed interactional patterns led to the identification of three factors that significantly affected the construction of the medical-nursing boundary, specifically: patients’ state of awareness, the type of clinical approach adopted by nurses and doctors, and the level of acuity on the ward. The article advances our knowledge of the medical-nursing boundary by shedding light on its flexible and contextual nature and by adding further nuance to the boundary-blurring/boundary-reinforcing dichotomy. New features of the ‘negotiation context’ are identified that enable more convincing explanations of why the medical-nursing boundary varies across care settings. Finally, the study advances the negotiated order theory by offering a framework for considering the structural differences that shape local negotiations.

Gifts and influence: Conflict of interest policies and prescribing of psychotropic medications in the United States
Marissa King, Peter S. Bearman

The pharmaceutical industry spends roughly 15 billion dollars annually on detailing – providing gifts, information, samples, trips, honoraria and other inducements – to physicians in order to encourage them to prescribe their drugs. In response, several states in the United States adopted policies that restrict detailing. Some states banned gifts from pharmaceutical companies to doctors, other states simply required physicians to disclose the gifts they receive, while most states allowed unrestricted detailing. We exploit this geographic variation to examine the relationship between gift regulation and the diffusion of four newly marketed medications. Using a dataset that captures 189 million psychotropic prescriptions written between 2005 and 2009, we find that uptake of new costly medications was significantly lower in states with marketing regulation than in areas that allowed unrestricted pharmaceutical marketing. In states with gift bans, we observed reductions in market shares ranging from 39% to 83%. Policies banning or restricting gifts were associated with the largest reductions in uptake. Disclosure policies were associated with a significantly smaller reduction in prescribing than gift bans and gift restrictions. In states that ban gift-giving, peer influence substituted for pharmaceutical detailing when a relatively beneficial drug came to market and provided a less biased channel for physicians to learn about new medications. Our work suggests that policies banning or limiting gifts from pharmaceutical representatives to doctors are likely to be more effective than disclosure policies alone.

Requests for cesarean deliveries: The politics of labor pain and pain relief in Shanghai, China
Eileen Wang

Cesarean section rates have risen dramatically in China within the past 25 years, particularly driven by non-medical factors and maternal requests. One major reason women request cesareans is the fear of labor pain, in a country where a minority of women are given any form of pain relief during labor. Drawing upon ethnographic fieldwork and in-depth interviews with 26 postpartum women and 8 providers at a Shanghai district hospital in June and July of 2015, this article elucidates how perceptions of labor pain and the environment of pain relief constructs the cesarean on maternal request. In particular, many women feared labor pain and, in a context without effective pharmacological pain relief or social support during labor, they came to view cesarean sections as a way to negotiate their labor pain. In some cases, women would request cesarean sections during labor as an expression of their pain and a call for a response to their suffering. However, physicians, under recent state policy, deny such requests, particularly as they do not view pain as a reasonable indication for a cesarean birth. This disconnect leads to a mismatch in goals for the experience of birth. To reduce unnecessary C-sections, policy makers should instead address the lack of pain relief during childbirth and develop other means of improving the childbirth experience that may relieve maternal anxiety, such as allowing family members to support the laboring woman and integrating a midwifery model for low-risk births within China’s maternal-services system.

“Not there yet”: Examining community support from the perspective of people with dementia and their partners in care
R.V. Herron, M.W. Rosenberg

People with dementia can live meaningful and engaged lives with the appropriate social and physical supports in place. There has been relatively little research, however, on the experiences and desires of people with dementia themselves as they negotiate informal and formal support in rural and small town settings. In this article, we draw on semi-structured interviews with 46 community-dwelling people with dementia and 43 partners in care in rural Ontario, Canada to examine how people with dementia relate to and within their communities as well as their perceptions of community support services. We identify the continued contributions of people with dementia to their own care and the care of others as well as common social, cultural, and organizational factors related to delayed service use and refusal to use particular services. We argue that care is “not there yet” for people in the earlier stages of dementia and that more attention needs to be paid to what people with dementia can offer their communities as well as the role of culture and gender in developing support. Our findings make an important contribution to understanding the experience of dementia in rural and small town Canada, which is relevant to rural healthcare and community support in other industrialized countries.

Sociology of Health & Illness

Family social capital and health – a systematic review and redirection (open access)
Elena Carrillo Alvarez, Ichiro Kawachi, Jordi Riera Romani

The level (or scale) at which social capital can be conceptualised and measured ranges potentially from the macro-level (regional or country level), to the meso-level (neighbourhoods, workplaces, schools), down to the individual level. However, one glaring gap in the conceptualisation of social capital within the empirical literature has been the level of the family. Our aim in this review is to examine the family as the ‘missing level’ in studies on social capital and health. To do so, we conducted a systematic review on the use and measurement of this notion in the health literature, with the final intention of articulating a direction for future research in the field. Our findings are consistent with the notion that family social capital is multidimensional and that its components have distinct effects on health outcomes. Further investigation is needed to understand the mechanisms through which family social capital is related to health, as well as determining the most valid ways to measure family social capital.

Among friends: a qualitative exploration of the role of peers in young people’s alcohol use using Bourdieu’s concepts of habitus, field and capital (open access)
Georgie J. MacArthur, Nina Jacob, Pandora Pound, Matthew Hickman, Rona Campbell

Drinking is viewed by young people as a predominantly social activity which provides an opportunity for entertainment and bonding with friends. Using Bourdieu’s concepts of habitus, field and capital, this article explores young people’s attitudes and beliefs around alcohol use, influences on behaviour, and the role of peers, with a view to informing the development of preventive interventions. Semi-structured interviews were conducted with 28 young people aged 18–20 in the south west of England. We describe how friends were integral in drinking experiences, and drinking with friends was equated with fun and enjoyment. In this way, the desire for social and symbolic capital appeared to be a key motivator for adolescent drinking. Critically, however, wider cultural norms played the predominant role in shaping behaviour, via the internalisation of widely accepted practice and the subsequent externalisation of norms through the habitus. Applying Bourdieu’s theory suggests that population-level interventions that regulate alcohol consumption, and thus disrupt the field, are likely to facilitate behaviour change among young people by driving a response in habitus.

Determinants of dietary compliance among Italian children: disentangling the effect of social origins using Bourdieu’s cultural capital theory (open access)
Filippo Oncini, Raffaele Guetto

Making use of Bourdieu’s threefold conceptualisation of cultural capital, this paper examines and disentangles the association between social origins and children’s food consumption. The aim of the work is twofold. Using data from the Multipurpose survey on daily life conducted by Istat (2009–2012), we first show that children’s compliance with dietary advice is indeed influenced by their social origins, but more so in terms of familial cultural resources than economic ones. All types of cultural capital enhance the quality of children’s nutrition. Second, we concentrate on the role of the school canteen as a child-centred investment strategy intended to reduce health inequalities by providing a wholesome lunch for all children. Although the school meal effectively improves the degree of dietary compliance, the results indicate that this public service is less often used by children from lower social origins. Moreover, we do not find any equalising effect of the school meal on the diets of disadvantaged children. These findings are discussed in light of future research on sociology of health stratification and health promotion programmes.

‘Good’ patient/‘bad’ patient: clinical learning and the entrenching of inequality (open access)
Eeva Sointu

This article develops sociological understanding of the reproduction of inequality in medicine. The material is drawn from a longitudinal study of student experiences of clinical learning that entailed 72 qualitative in-depth interviews with 27 medical students from five medical schools in the USA. To highlight the subtle, yet powerful, ways in which inequality gets entrenched, this article analyses ideas of the ‘good’ and the ‘bad’ patient. Bad patients question not only biomedical knowledge but also medical students’ commitment to helping people. Good patients engage with medical students in a manner that upholds biomedical knowledge and enables students to assume the role of the healer and the expert. At the same time, good patients possess cultural skills that align with those of medical practitioners. This alignment is, furthermore, central to definitions of the good patient. Distinctions drawn between good and bad patients thus both embody as well as enforce social inequality. The subtle reproduction of inequality is, however, difficult to discern because judgements about patients entwine with emotion.

The changing body work of abortion: a qualitative study of the experiences of health professionals (open access)
Carrie Purcell, Sharon Cameron, Julia Lawton, Anna Glasier, Jeni Harden

‘Body work’ has emerged at the nexus of sociologies of work and bodies as a means of conceptualising work focusing on the bodies of others. This article utilises this analytical tool in the context of contemporary abortion work. Abortion provision in Britain has seen significant change in the last 25 years, paralleling developments in medical methods, and the option for women under nine weeks’ gestation to complete the abortion at home. These shifts raise questions around how abortion work is experienced by those who do it. We apply the conceptual lens of body work to data drawn from in-depth interviews with 37 health professionals involved in abortion provision, to draw out the character, constraints and challenges of contemporary abortion work. We explore three key themes: the instrumental role of emotional labour in facilitating body work; the temporality of abortion work; and bodily proximity, co-presence and changes in provision. By drawing on the conceptual frame of body work, we illuminate the dynamics of contemporary abortion work in Britain and, by introducing the idea of ‘body work-by-proxy’, highlight ways in which this context can be used to expand the conceptual boundaries of body work.

Disentangling patient and public involvement in healthcare decisions: why the difference matters (open access)
Mio Fredriksson, Jonathan Q. Tritter

Patient and public involvement has become an integral aspect of many developed health systems and is judged to be an essential driver for reform. However, little attention has been paid to the distinctions between patients and the public, and the views of patients are often seen to encompass those of the general public. Using an ideal-type approach, we analyse crucial distinctions between patient involvement and public involvement using examples from Sweden and England. We highlight that patients have sectional interests as health service users in contrast to citizens who engage as a public policy agent reflecting societal interests. Patients draw on experiential knowledge and focus on output legitimacy and performance accountability, aim at typical representativeness, and a direct responsiveness to individual needs and preferences. In contrast, the public contributes with collective perspectives generated from diversity, centres on input legitimacy achieved through statistical representativeness, democratic accountability and indirect responsiveness to general citizen preferences. Thus, using patients as proxies for the public fails to achieve intended goals and benefits of involvement. We conclude that understanding and measuring the impact of patient and public involvement can only develop with the application of a clearer comprehension of the differences.

From medicalisation to riskisation: governing early childhood development (open access)
Fan-Tzu Tseng

This study investigates the transformation of the regime of governing child developmental conditions in Taiwan. With the shift from a medicalised regime of disabilities to a riskised regime of developmental delays, early childhood development has become the primary focus of governance. Drawing upon a multi-sited ethnography to follow the process by which the ideas and practices of early intervention are imported and adapted to local conditions, I elucidate how and why the new subject, that is, children with developmental risks and their families, emerged with the concomitant re-configuration of governance. By using three riskisation strategies, namely, the truth claim of prevalence rate of developmental delays, mass screening with standardised instruments, and identification of risky families, child development is problematised collectively and surveilled individually. Within this new regime, every young child is no longer considered either normal or disabled but is rather located within a developmental risk continuum and subject to relentless medical and social interventions. While ‘returning to normal’ becomes the predominant goal of early intervention for developmentally delayed children, disabilities are increasingly enacted negatively and considered embodying an undesirable state of being. These changing delimitations and subsequent interventions have profoundly reshaped our understanding of the child, normality and disability.

How differences matter: tracing diversity practices in obesity treatment and health promotion (open access)
Ulrike Felt, Kay Felder, Michael Penkler

Diversity has become a buzzword in medical care, denoting a re-evaluation of what it means to attend to differences among human bodies and lives. Questions about what types of differences matter and how they should be defined have become important normative and analytical challenges. Drawing on two case studies, we show how differences between patients and patient-collectives are not simply waiting to be recognised and addressed but also enacted within situated healthcare practices. Although concerns with diversity are present in both cases, they take different forms. In a Viennese health–promotion project for obese clients, care practices are both based on and reproduce large-scale categories that divide the population into distinct subgroups with specific needs. Conversely, in an outpatient clinic for bariatric surgery patients, a technical fix-oriented procedure leads to concerns over diversity becoming an add-on realised by tending to each patient’s idiosyncrasies and personal stories. By tracing the practices of diversity and the tensions they produce, we show how classifications and understandings of human difference are based on infrastructures that enable and constrain them. Furthermore, we discuss how they become consequential in healthcare, thereby indicating the importance of remaining reflexive about the political implications of diversity discourse and practice.

Stratified, precision or personalised medicine? Cancer services in the ‘real world’ of a London hospital (open access)
Sophie Day, R Charles Coombes, Louise McGrath-Lone, Claudia Schoenborn, Helen Ward

We conducted ethnographic research in collaboration with a large, research-intensive London breast cancer service in 2013–2014 so as to understand the practices and potential effects of stratified medicine. Stratified medicine is often seen as a synonym for both personalised and precision medicine but these three terms, we found, also related to distinct facets of treatment and care. Personalised medicine is the term adopted for the developing 2016 NHS England Strategy, in which breast cancer care is considered a prime example of improved biological precision and better patient outcomes. We asked how this biologically stratified medicine affected wider relations of care and treatment. We interviewed formally 33 patients and 23 of their carers, including healthcare workers; attended meetings associated with service improvements, medical decision-making, public engagement, and scientific developments as well as following patients through waiting rooms, clinical consultations and other settings. We found that the translation of new protocols based on biological research introduced further complications into an already-complex patient pathway. Combinations of new and historic forms of stratification had an impact on almost all patients, carers and staff, resulting in care that often felt less rather than more personal.

Theory, Culture and Society

Danger, Crime and Rights: A Conversation between Michel Foucault and Jonathan Simon (open access)
Michel Foucault, Jonathan Simon, Stuart Elden

This article is a transcript of a conversation between Michel Foucault and Jonathan Simon in San Francisco in October 1983. It has never previously been published and is transcribed on the basis of a tape recording made at the time. Foucault and Simon begin with a discussion of Foucault’s 1977 lecture ‘About the Concept of the “Dangerous Individual” in 19th-Century Legal Psychiatry’, and move to a discussion of notions of danger, psychiatric expertise in the prosecution cases, crime, responsibility and rights in the US and French legal systems. The transcription is accompanied by a brief contextualizing introduction and a retrospective comment by Simon.

Biopolitics, Thanatopolitics and the Right to Life (open access)
Muhammad Ali Nasir

This article focuses on the interrelationship of law and life in human rights. It does this in order to theorize the normative status of contemporary biopower. To do this, the case law of Article 2 on the right to life of the European Convention on Human Rights is analysed. It argues that the juridical interpretation and application of the right to life produces a differentiated governmental management of life. It is established that: 1) Article 2 orients governmental techniques to lives in order to ensure that both deprivation and protection of lives is lawful; 2) A proper application of Article 2 grounds itself on a proper discrimination of lives which causes Article 2 to be applied universally but not uniformly to all juridical subjects; 3) The jurisprudence of Article 2 is theoretically appreciable only in a ‘politics of life’. Finally, the article ends with a plea to analyse other fundamental human rights in the context of ‘biopolitical governmentality’.

Social Justice has put together an open access collection of blogs-articles on the social justice impact of Trump, which includes a brief review of Trump’s health care agenda.

Trump’s Health Care Agenda (open access)
Thomas Bodenheimer

The nomination of Tom Price to be Secretary of Health and Human Services and of Seema Verma to run the Medicare and Medicaid programs ensures a major attack on health services for the people of the United States. On health care, there is agreement between the Steve Bannon/Tea Party faction of the Trump pre-administration and the Paul Ryan/traditional Republican faction: they both want to repeal the Affordable Care Act (ACA). This agreement will affect both the individual mandate and the Medicaid expansion portions of the ACA. On the other major healthcare issue, the future of Medicare, the Trump factions disagree. The Paul Ryan faction and Tom Price hope to convert Medicaid into a privatized voucher system, whereas Trump’s pre-election statements—supported by much of his base—suggest that Trump wants to leave Medicare alone. This review of Trump’s health care agenda looks at the ACA’s individual mandate, the ACA’s Medicaid expansion, and the future of Medicare.

Alice Street’s “Biomedicine in an Unstable Place: Infrastructure and Personhood in a Papua New Guinean Hospital” by Mackenzie Cramblit

30 Janvier 2017 - 12:00pm

Biomedicine in an Unstable Place: Infrastructure and Personhood in a Papua New Guinean Hospital

by Alice Street

Duke University Press, 2014, 204 pages

Social anthropologist Alice Street’s first book is an ambitious ethnography of personhood and recognition in Madang Hospital, an under-resourced provincial hospital in Papua New Guinea. The book shows how doctors, nurses, and patients endeavor to make themselves “visible” to others in order to initiate relations of care at multiple scales, while also emphasizing the uncertainties of diagnosis and treatment within an institution subject to perennial shortages of staff and supplies.

The book’s main section explores the treatment and experience of disease within the public ward of Madang Hospital. Street introduces the concept of “biomedical uncertainty” to describe how doctors must forego conclusive diagnosis and embrace a pragmatic approach to treating patients in an under-resourced setting. That this kitchen-sink method is the one best suited to the circumstances at Madang Hospital seems reasonable – after all, the doctors themselves say so. But Street’s optimistic claim that this “uncertainty…is another productive form that biomedical knowledge can take” and her apparent endorsement of what she terms “technologies of not knowing” feels out of step with the real ways doctors in this environment struggle to produce care amidst difficult constraints (111). What should be commended is the Madang doctors’ commitment to take action in spite of the prevailing biomedical uncertainty in their ward, not the uncertainty itself ­– the unenviable result of chronic resource shortages. It would seem essential to distinguish between this kind of uncertainty on the one hand and a positive strategy of diagnostic suppleness or nonclosure on the other. When, in other words, is biomedical uncertainty a stance that doctors actively choose, and when is it an unwelcome imposition?

The book is most compelling when it combines insights from the fields of New Melanesian Ethnography and medical anthropology to show how social inequalities present as differential possibilities of care within the hospital. The elusiveness of recovery in this space contributes to patients’ profound anxieties about being properly recognized and acted upon by other actors within and outside the hospital. In a Melanesian context, visibility prompts social action, and being properly “seen” by others is the basis of relational and physical wellbeing. Thus, patients at Madang Hospital are more concerned about making themselves the subjects of others’ care than they are about understanding the cause of their disease. Paradoxically, getting well in Madang Hospital presupposes the social viability it takes to make oneself appear as a person worth caring for. Street explains that patients attempt to “make themselves visible as socially viable and well persons” in order to initiate the relations of care (with doctors, nurses, and family members) through which they will actually be healed (118). Patients in the Madang public ward therefore suffer doubly: languishing in their beds due to inadequate attention and medical resources, while also blaming themselves for failing to appear deserving of care. If the doctors at Madang are often unsure how to diagnose patients because their symptoms are indeterminate, the patients actually appear to be doing much of this work themselves, though they often invoke so-called “cultural” explanations to rationalize their inability to get well rather than biomedical ones. It might have been interesting for Street to explore in greater depth how the burden of diagnosis in Madang Hospital is shared both between doctors and patients and across “cultural” and “biomedical” epistemologies.

The book’s final section further develops the theme of social recognition to show how institutional and collective entities – nurses’ unions, hospital administrators, clinicians, and researchers – engage strategies of visibility to attract the attention of other bodies and multiply the resources at their disposal. Street’s analysis of a partnership between Madang Hospital and an Australian research hospital shows how the production of reputable global health research depends on and reinforces an unequal geography of place. While Australian researchers need to use Madang Hospital to collect samples from the local population, they are not willing to use its unreliable lab facilities to analyze them. But instead of investing in the improvement of these facilities – one lasting way that local hospital staff and patients might benefit from international research agreements – the researchers elect to ship samples back to Australia for analysis. Local hospital staff grumble because they are not engaged meaningfully in the partnership, and the Australian team’s ceremonious gift of a single copy of a medical textbook feels tokenistic because it is incommensurate with the value generated by the research. These stories dramatize the inequalities that result when partnership is pursued without reciprocity. The question implicitly raised by these stories is a powerful one: What kind of exchange relationship is possible when one party is only a visitor within the transactional field?

Every anthropologist who has done fieldwork is familiar with the ethical concerns motivating this question, and Street is no exception. In the course of her research, she realizes that she has been drawn into the same world that she is studying, but that her powers have been inaccurately assessed. Patients believe she holds the key to unlocking white people’s medicine, evidently viewing her “as another ‘hospital technology’” they can leverage in the course of their treatment (32). Street (not a trained physician) notes with measured disappointment that she was unable to provide the care that patients sought from her, even if her attentiveness was soothing in other respects. But this problem of incommensurability, which is central not only to the modes of partnership and exchange that this book examines, but also to the enterprise of ethnography itself, deserves more expansive commentary from the author – indeed, from all of us. Is it enough for anthropologists to continually intone that “[g]ood description is not inert”? (33) Or do we also bear the responsibility of asking more precisely how the ethnographies we write participate in reality? I would suggest that our capacity to really see each other – that is, to attend to each other in real and lasting ways – depends on it.

 

Mackenzie Cramblit is a PhD Candidate at Duke University motivated by questions of intimacy, care and value in relation to rural places. She is interested in understanding what constitutes an “environment,” how environments are made livable, and how we become attached to each other in their midst. Her dissertation approaches these ideas through a study of a remote community and “wild” landscape on the West Coast of Scotland.

Special Issue! Between Biopolitical Governance and Care: Rethinking Health, Self, and Social Welfare in East Asia by Anna Zogas

30 Janvier 2017 - 6:01am

The first issue of Medical Anthropology in 2017 is a special issue, “Between Biopolitical Governance and Care: Rethinking Health, Self, and Social Welfare in East Asia.” Enjoy!

Between Biopolitical Governance and Care: Rethinking Health, Selfhood, and Social Welfare in East Asia (open access)
Amy Borovoy & Li Zhang

(There is a video abstract, too.)

In East Asia, health has historically been entwined with notions of morality and broader social ideals. But can the state and other institutions legitimate their involvement in everyday life habits that contribute to poor health outcomes? For example, food consumption, smoking, or cancer—issues that can be conceived as a matter of
‘individual choice’ and personal responsibility. In this issue, we explore the fine lines between exercises of social power that are repressive and controlling, and those that are productive, caring, or supportive. We examine intersections of individual desires and self-work with statism and the public good—for instance, drug addiction care and the use of psychological counseling in China, understanding cancer and stress in South Korea, and the containment of harmful behavior in Japan.

The Rise of Therapeutic Governing in Postsocialist China
Li Zhang

In this article, I explore how and why psychological intervention, often in the name of guanai (care), has gradually become a critical tool of managing the population and governing society in postsocialist China. Psychological counselors and experts are becoming a new form of authority, an indispensable part of creating and managing knowable, stable, and governable subjects for the military, the police, schools, and enterprises. ‘Therapeutic governing’ refers to the adoption of the therapeutic ethos, techniques, and care to improve the management of the work force and to help individuals cope with life in a rapidly changing society. I examine what drives local authorities to pursue this change, and how therapeutic governing takes on a different character and significance given China’s unique path. I suggest that incorporating psychotherapeutic intervention into postsocialist governing can simultaneously produce disciplining and nurturing, repressive and unfettering effects in everyday life.

Cancer, Stress, and Ironies of Cancer Understanding in South Korea
Laura C. Nelson

Cancer incidence has been rising in South Korea, coincident with industrialization and with increased longevity. This has opened the way to a presentation of cancer as a symptom of prosperity and social advancement. Cancer care for older South Koreans is marketed widely as a way of giving back to the older generation, and is often portrayed as an opportunity to mobilize technological achievement alongside family care work to honor aging parents. Because breast cancer tends to affect a younger cohort, however, breast cancer patients seek more specific explanations for their illness in order to prevent recurrence. Many breast cancer patients identify ‘stress’ as the cause of their cancer, reflecting endemic stress in the lives of ordinary South Korean women. While this implies a critique of society and, specifically, of gender constructs, the emphasis on interpersonal ‘stress’ situates cancer causality in family relationships rather than in social, political, or environmental contexts. Cancer management and stress explanations together mute inquiry into causality.

Japan’s Public Health Paradigm: Governmentality and the Containment of Harmful Behavior
Amy Borovoy

In this essay, I revisit the politics of social control in the context of contemporary public health discussions, touching on the management of obesity and chronic illness. Foucault’s cautionary observations regarding the infiltration of normative social values into the terrain of healing offer a productive framework for considering the politics of public health in the industrialized world. I explore Japan’s public health paradigm and its key features of bureaucratic reform and health interventions through screening, socialization, education, and aggressive lifestyle training, and I consider the close proximity between health and socio-cultural values in the management of chronic conditions in Japan.

Curating Employee Ethics: Self-Glory Amidst Slow Violence at The China Tobacco Museum
Matthew Kohrman

Seen through the prism of public health, the cigarette industry is an apparatus of death. To those who run it, however, it is something more prosaic: a workplace comprised of people whose morale is to be shepherded. Provisioning employees of the cigarette industry with psychic scaffolding to carry out effective daily work is a prime purpose of the China Tobacco Museum. This multistoried exhibition space in Shanghai is a technology of self, offering a carefully curated history of cigarette production thematized around tropes such as employee exaltation. Designed to anchor and vitalize the ethical outlook of those working for the world’s most prolific cigarette conglomerate, the museum is a striking illustration that industrial strongholds of ‘slow violence’ produce their own forms of self-care.

‘Spending My Own Money, Harming My Own Body’: Addiction Care in a Chinese Therapeutic Community
Sandra Teresa Hyde

In this article, I explore a Chinese residential therapeutic community I call Sunlight in order to understand its quotidian therapies, its fraught nature binding China’s past with its future, and the to care for the self under postsocialism. Reviewing Sunlight ethnographically allows for broader theoretical exploration into how China’s economic transition created tensions between capitalism, socialism, and communism; between individual and community, care and coercion, and discipline and freedom. Sunlight blended democratic, communal, and communist values that in several ways transition drug addicts into a market-socialist society. In focusing on the socialist transition to capitalism much work concentrates on the neoliberal transition as the only path out of communism rather than exploring its exceptions. In exploring China as an exception, I ask: What do the residents, peer-educators and administrators reveal in their stories and reactions to community-based therapeutics of care and what happens when their notions of care clash?

Technologies of the Self and Ethnographic Praxis
Paul Brodwin

The authors contributing to this special issue draw on Foucault’s notion of technologies of the self: the means by which people operate on their own bodies and souls in pursuit of self-transformation, always according to particular regimes of value. Foucault’s notion remains attractive to anthropology: the technologies are ethnographically visible, and they illustrate how power affects the intimate realms of social life. The authors in this issue take up three problems: (1) the process by which people craft new subjectivities, (2) the genealogy of the new technologies of the self now circulating in East Asia, and (3) the forms of governance and political rationality that they justify. The articles as a whole testify to the fruitful encounter between ethnographic praxis and Foucault’s philosophical project. They also show how transnational movement and hybrid cultural forms inflect the strategies of governance associated with modern technologies of the self, especially those allied with biomedicine.

Who Cares? A Discussion on Care from Edinburgh’s Centre for Medical Anthropology by Bridget Bradley

24 Janvier 2017 - 5:19pm

On 11th May 2016 the Students of Medical Anthropology (SoMA) at University of Edinburgh, the student group within Edinburgh’s Centre for Medical Anthropology (EdCMA) held their inaugural event, a symposium entitled ‘Who Cares?’

As early career scholars in medical anthropology working across a variety of health-related contexts, we (SoMA) realised that care as a theme was present in all our work. This prevalence pointed to the anthropological significance of the concept and spurred discussions about ‘how care is different’ within and across our fields. However, it also highlighted that the concept of ‘care’ seemed to lack clarity and definable parameters within larger anthropological discussions. These concerns inspired  SoMA’s first student-led symposium.  Reflecting on some ideas within the published debate on ‘Care in Practice,’ within this symposium, we similarly “…sought to ask a how-question: how is “care” being done? Which modes and modalities of “caring” may we trace in various practices? How can each of these, different as they are, shed light on and help to specify the others” (Mol 2010: 84). We sought to do this by focusing on fieldwork experiences and considering how people within our sites are using the term care, and importantly, how they are performing care and for which reasons.

But why should anthropologists care about care? What does the term offer? What do we really know about care and caregivers? In answer, these papers are presentations of our understandings of care within our fields and statements arguing for the importance of examining care.  They also aimed to instigate collective discussion about care as a concept and its role within society to “shed light on and help to specify” its parameters. In our papers and in the discussions that followed, this symposium addressed the role of care in social relationships: how care shapes power and dependency; the extent and limits of care; the relationship between harm, violence, and care; and the question of care and morality.

With support and resources supplied by the EdCMA, the aim for this event was to build on the experiences of students of medical anthropology and to launch SoMA as a group, while creating a fruitful discussion on care among EdCMA colleagues and guests. The SoMA event organisers and speakers were: Bridget Bradley, Sandalia Genus, Lilian Kennedy and Hannah Lesshafft . A roundtable discussion with EdCMA members Alex Nading, Stefan Ecks, Lucy Lowe, Koreen Reece and Alice Street, and chaired by Hannah Lesshafft, explored the ways that care might be a useful theme in medical anthropology and beyond. What follows here are abridged versions of these original presentations, a discussion paper by Alice Street, and a summary of the conversations that stemmed from the roundtable.

 

Care and Community in Experiences of Trichotillomania

Bridget Bradley

What Does Care Do? Reflections on Care in Medical Research

Sandalia Genus

Who is the ‘Who’ in ‘Who Cares?’: Finding the Person in Dementia

Lilian Kennedy

Care as Self-care: Healing Practices in a Brazilian Candomblé House

Hannah Lesshafft

Discussant Notes

Alice Street

Discussion: Why should we care?

Bridget Bradley and Lilian Kennedy

 

Co-organised by: Bridget Bradley, Sandalia Genus, Lilian Kennedy, Hannah Lesshafft and Alice Street

 

Who we are

Students of Medical Anthropology (SoMA) at Edinburgh’s Centre for Medical Anthropology (EdCMA)

As part of the Centre for Medical Anthropology at Edinburgh University, the research students of Medical Anthropology (SoMA) have established a group to organise student-led events and facilitate research collaboration. SoMA allows early-career scholars to develop their work in dialogue with fellow researchers in the growing field of medical anthropology.

Bridget Bradley is a third year PhD student of social anthropology at The University of Edinburgh. Her doctorate research focuses on the experiences of people living with body-focused repetitive behaviours (compulsive hair pulling and skin picking) in the United Kingdom and United States. Bridget is currently the student representative for SoMA, the Students of Medical Anthropology group associated with the Edinburgh Centre for Medical Anthropology (EdCMA).

Sandalia Genus is currently a PhD candidate in Social Anthropology at the University of Edinburgh.  From 2012 to 2015 she conducted 17 months of fieldwork among the various stakeholders of malaria control and malaria vaccine development in Tanzania and Belgium.  Her research examines the intersection of global health and international development, with a focus on medical research, medical technologies and global health interventions.

Lilian Kennedy is a social anthropologist PhD candidate at the University of Edinburgh. Her research investigates practices of care, kinship, memory, and subjectivity as they relate to dementia. Her research is based on fieldwork conducted in London, working with people with dementia and the family members who help care for them.

Hannah Lesshafft is a social anthropologist and medical doctor. Her PhD research on Candomblé healing practices is based on 12 months fieldwork in Northeast Brazil. She currently works as a research fellow and teaching fellow at the Edinburgh Medical School.

Alice Street is Senior Lecturer and Chancellors Fellow in the School of Social and Political Science at the University of Edinburgh. Her research focuses on the material politics of global health, with a focus on Papua New Guinea and South India. Her book, Biomedicine in an Unstable Place: Infrastructure and Personhood in a Papua New Guinean Hospital was published by Duke University Press in October, 2014.

 

Upcoming Events

MAYS/SoMA Collaborative Conference, 15 -16 June 2017: ‘Medical Anthropology Beyond Academic Borders’

 

Follow us – Twitter: @SoMA_EdCMA

Become a Member of EdCMA – Email: Ian.Harper@ed.ac.uk

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