Skip directly to content

Somatosphere

Addthis

Subscribe to flux Somatosphere
Science, Medicine, and Anthropology
Mis à jour : il y a 6 heures 38 min

The Impossibility of the Inert: Placebo and the Essence of Healing by Thomas J. Csordas

23 Juin 2017 - 7:24pm

The concept of placebo is predicated on the opposition between active and inert, deploying this opposition to assert that an action or substance with no inherent active principle can have a paradoxical effect “as if” it were active.1 My thesis is that there is no such thing as the inert in human affairs, relationships, or experience. Think of the apparently simple retort of the bullied child that “sticks and stone may break my bones but names can never hurt me.” Contrary to this retort, names can indeed hurt. They are not inert, but carry an actual force identifiable as hate or disdain. And what of the retort itself? Is it a vain, desperate, and ultimately inert act of self-protection, effective only insofar as it taps into the “as if” logic of the placebo? I think not, though like any remedy it must be applied under the right conditions and with the understanding that it may not be uniformly effective in the degree to which it buffers the noxious influence of name-calling with an equivalent, self-confident force of self-esteem. There is also, however, an easily overlooked element of materiality in the retort. That is its rhythm: the fact that it is phrased in trochaic meter. It is not only that meter adds the force of incantation or song, but that it directly engages the embodied existential immediacy of the situation, contributing an element of jauntiness encompassing not only tone of voice but posture and gesture.

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

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

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

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

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

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

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

 

Notes

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

 

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

Book review: Traces of the Future: An Archaeology of Medical Science in Africa by Damien Droney

21 Juin 2017 - 5:12pm

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Stakes of Life: Science, states, policies, publics and ‘the first thousand days’ by Fiona C. Ross

19 Juin 2017 - 7:16pm

Welcome back to the “First Thousand Days of LifeSomatosphere series. Here we continue to explore the ways that a global health initiative driven by new findings in epigenetics and neuroscience and by a reframing of theories about health and disease in terms of developmental origins shape ideas about (global) health and population futures, invigorate campaigns, and take form and settle in localized contexts. Understanding the links between science, biomedicine, policy, population, well-being and relationship as simultaneously both meshed and contingent, our series posits questions about what affordances and limitations lie in new modalities of understanding human illness and well-being. It examines how policy is made and with what effects for its recipients, how states are implicated in health and its others, what forms of the everyday materialize under the lens of new findings in epigenetics and epidemiology, what modalities of knowing emerge and how they settle with older forms, and how ethnography might contribute.

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

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

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

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

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

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

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

The First Thousand Days: A South African Example

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

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

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

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

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

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

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

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

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

 

References

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

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

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

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

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

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

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

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

 

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

Making the theoretical practical: Engaging undergraduate students in research methods by Hannah Mohammad

14 Juin 2017 - 7:09pm

I am currently an undergraduate student in the Department of Global Health & Social Medicine at King’s College London. The Department’s UG program offers students the opportunity to study social aspects of health and medicine in a multi-disciplinary context with close collaboration between the social sciences, life sciences and biomedicine. In addition, a great emphasis is put on methods training to equip students to carry out their own empirical research projects.

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

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

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

 

Planning the Research Showcase

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

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

 

The Research Showcase

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

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

 

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

 

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

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

 

Acknowledgements

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

 

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

Book Forum–Elizabeth A. Wilson’s Gut Feminism by Alexandra Sarkozy

12 Juin 2017 - 7:08pm

Elizabeth Wilson’s Gut Feminism revisits feminism’s traditionally antagonistic engagement with biology with a call to reposition the body in feminist thought. As Wilson critically explores relationships between guts and melancholia, pharmacokinetics and bile, psyche and soma, she generates tools and insights for a new feminist reading of biology, and articulates the role of aggression as a necessary condition for feminist politics. These commentaries tease apart and extend aspects of Wilson’s arguments, each one metabolizing the pill to produce transformed understandings. We hope you enjoy!

 

Comment on Gut Feminism
Des Fitzgerald
Cardiff University

Incisive Gutting – and Tolerating a Capacity for Harm
Megan Warin
University of Adelaide

A Strange Kind of Sad
Harris Solomon
Duke University

Stomachaches
Amber Benezra
New York University

A reply
Elizabeth A. Wilson
Emory University

 

Download pdf of book forum

In the Journals – May 2017 by Livia Garofalo

1 Juin 2017 - 8:02pm

Please enjoy the article round-up for the month of May! This post was put together in collaboration with Ann Marie Thornburg.

American Ethnologist

Plant matters: Buddhist medicine and economies of attention in postsocialist Siberia

Tatiana Chudakova

Buddhist medicine (sowa rigpa) in Siberia frames the natural world as overflowing with therapeutic potencies: “There is nothing in the world that isn’t a medicine,” goes a common refrain. An exploration of sowa rigpa practitioners’ committed relations with the plants they make into medicines challenges human-centric notions of efficacy in anthropological discussions of healing. Their work of making things medicinal—or pharmacopoiesis—centers on plants’ vital materialities and requires attention to the entanglements among vegetal and human communities and bodies. Potency is thus not the fixed property of substances in a closed therapeutic encounter but the result of a socially and ecologically distributed practice of guided transformations, a practice that is managed through the attentive labor of multiple actors, human and otherwise. In Siberia, pharmacopoiesis makes explicit the layered relations among postsocialist deindustrialization, Buddhist cosmologies, ailing human bodies, and botanical life.

Annals of Anthropological Practice

Special Issue: Continuity and Change in the Applied Anthropology of Risk, Hazards, and Disasters

Disaster vulnerability in anthropological perspective 

A.J. Faas

In the study of disasters, the concept of vulnerability has been primarily employed as a cumulative indicator of the unequal distributions of certain populations in proximity to environmental and technological hazards and an individual or group ability to “anticipate, cope with, resist and recover” from disaster (Wisner et al. 2004). This concept has influenced disaster research as a means to question how natural, temporary, and random disasters are and focused analysis on the human-environmental processes that produce disasters and subject some populations more than others to risk and hazards. Critics also point out that vulnerability frameworks elude measure, strip people of agency, and reify stereotypes of the Global South. In light of both the historical importance and the sustained critiques of the concept, this chapter looks to anthropological and related literature to explore several questions: is it possible that vulnerability has outlived its usefulness? Is it still analytically meaningful for anthropologists currently working in the area of risk, hazards, and disasters? And what are the potential consequences or benefits that could come with conveying the concept of vulnerability to policy and decision makers?

 

Resilience: A commentary from the vantage point of anthropology

Roberto Barrios 

In recent years, the concept of resilience has gained popularity as a means to describe the qualities and capacities that enable a community to recovery from a catastrophic event. Definitions of resilience make a number of assumptions about the nature of communities and the practices that enable their ability to cope or weather a disaster’s impact. In this article, I provide a brief history of the ways disaster researchers have defined resilience and provide an analysis of the fundamental assumptions upon which such definitions are based. Furthermore, I provide a critical analysis of such assumptions in light of anthropological knowledge about the relationships and processes that put communities on the map, shape the ways they are exposed to hazards, and their possibilities for recovery. In conclude by providing four recommendations for practice which stress 1) the recognition of disaster has a historically shaped process involving development practice and human-environment relations, 2) the recognition of the broader political ecological relationships that shape resilience, 3) an emphasis on systemic transformation rather than locality specific interventions as a means of resilience-building, and 4) a prioritization of subaltern voices in operationalizations of “rebuilding better” as a mechanism for addressing the practices of environmental injustice that routinely give form to disaster vulnerability and those conditions that are branded “low resilience.”

 

Cultural Anthropology  (open access)

Special issue on Affect

A Clinical Economy of Speculation: Financial Trading and Gambling Disorder in Spain

Jorge Núñez

This article concerns itself with financial traders in Spain who have been diagnosed with gambling disorder. It analyzes what I call the clinical economy of speculation, in which the category of problem gambler is repurposed to draw new lines around proper financial trading. In exploring the expansion of post–financial crisis regulatory mechanisms for credit and debt, as well as widening inequalities across the field of investment, I depict how both traders and clinicians become invested in medicalizing trading as gambling disorder. My theorizing interrogates whether and why common speculative practices are seen as sick and unsafe when everyday people, instead of banks and other financial institutions, perform them. I argue that the pathologized trader is an attempt to regulate, at the individual level, the increasing use of borrowed capital to make financial profits. The commodification of debt, however, is not a gender-neutral development. Female traders pay a greater price for venturing into the heights of finance. This focus on gender brings into view the redefinition of credit and debt within the domain of trading, and shows the role of debt-fueled financial speculation in the expansion of financial markets. These ethnographic findings are particularly relevant in a country like Spain, where the Great Recession has bred more new millionaires than ever before, even as the smaller fish of the economy are being medicalized and sometimes even incarcerated.

 

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

‘Am I really gonna go sixty years without getting cancer again?’ Uncertainty and liminality in young women’s accounts of living with a history of breast cancer

Sophie Rees

Although much research has examined the experience of breast cancer, the distinctive perspectives and lives of young women have been relatively neglected. Women diagnosed with breast cancer under the age of 45, and who had completed their initial treatment, were interviewed, and social constructionist grounded theory methods were used to analyse the data. The end of initial treatment was accompanied by a sense of unease and uncertainty in relation to recurrence and survival, and also fertility and menopausal status. The young women’s perceptions about the future were altered, and their fears about recurrence were magnified by the possibility of many decades ahead during which breast cancer could recur. The implications for the young women’s life course, in terms of whether they would be able to have children, would not become clear for several years after initial treatment. This resulted in a liminal state, in which young women found themselves neither cancer-free nor cancer patients, neither pre- nor post-menopausal, neither definitively fertile nor infertile. This liminal state had a profound impact on young women’s identities and sense of agency. This extends previous understanding of life after cancer, exploring the age-related dimensions of liminality.

 

‘Why worry about something you can’t control?’ Negotiated risk, longevity and health behaviours

Rebecca Llewellyn, Wayne Cunningham, Chrystal Jaye, Jessica Young, Richard Egan, Peter Radue

While we know about lay attitudes towards death and dying, we understand little about the ways people estimate their overall personal risk of life-limiting disease and/or death. This study contributes to the limited literature on lay longevity reckonings, with a particular focus on how these reckonings may influence health behaviours. Semi-structured interviews were held with 21 young older adults (54–65 years), addressing the core questions of ‘What do you think you will die from, and how long do you expect to live?’ Participants indicated their longevity estimation was guided by three key frameworks: family history, environment and lifestyle factors and lived experience. The reckoning process was also moderated by assumptions about loci of control and self-efficacy and the information available to participants. A tripartite model of death risk assessment is proposed, extending the idea of ‘negotiated risk’ beyond the scope of family history where it has received most attention. We argue that by drawing on the three risk-assessment frameworks, determining patients’ predisposition for external/internal attributions of control and perceptions of self-efficacy, clinicians will be better equipped to understand – and thus guide – patients’ reckonings of longevity and health behaviours that are influenced by it.

 

‘Naloxone works’: The politics of knowledge in ‘evidence-based’ drug policy

Kari Lancaster, Carla Treloar, Alison Ritter

For over 20 years, drug policy experts have been calling for the wider availability of naloxone, to enable lay overdose witnesses to respond to opioid overdose events. However, the ‘evidence base’ for peer-administered naloxone has become a key point of contention. This contention opens up critical questions about how knowledge (‘evidence’) is constituted and validated in drug policy processes, which voices may be heard, and how knowledge producers secure privileged positions of influence. Taking the debate surrounding peer-administered naloxone as a case study, and drawing on qualitative interviews with individuals (n = 19) involved in the development of naloxone policy in Australia, we examine how particular kinds of knowledge are rendered ‘useful’ in drug policy debates. Applying Bacchi’s poststructuralist approach to policy analysis, we argue that taken-for-granted ‘truths’ implicit within evidence-based policy discourse privilege particular kinds of ‘objective’ and ‘rational’ knowledge and, in so doing, legitimate the voices of researchers and clinicians to the exclusion of others. What appears to be a simple requirement for methodological rigour in the evidence-based policy paradigm actually rests on deeper assumptions which place limits around not only what can be said (in terms of what kind of knowledge is relevant for policy debate) but also who may legitimately speak. However, the accounts offered by participants reveal the ways in which a larger number of ways of knowing are already co-habiting within drug policy. Despite these opportunities for re-problematisation and resistance, the continued mobilisation of ‘evidence-based’ discourse obscures these contesting positions and continues to privilege particular speakers.

 

‘You feel like your whole world is caving in’: A qualitative study of primary care patients’ conceptualisations of emotional distress

Adam WA Geraghty, Miriam Santer, Samantha Williams, Jennifer Mc Sharry, Paul Little, Ricardo F Muñoz, Tony Kendrick, Michael Moore.

General practitioners are tasked with determining the nature of patients’ emotional distress and providing appropriate care. For patients whose symptoms appear to fall near the ‘boundaries’ of psychiatric disorder, this can be difficult with important implications for treatment. There is a lack of qualitative research among patients with symptoms severe enough to warrant consultation, but where general practitioners have refrained from diagnosis. We aimed to explore how patients in this potentially large group conceptualise their symptoms and consequently investigate lay understandings of complex distinctions between emotional distress and psychiatric disorder. Interviews were conducted with 20 primary care patients whom general practitioners had identified as experiencing emotional distress, but had not diagnosed with major depressive disorder. Participants described severe emotional experiences with substantial impact on their lives. The term ‘depression’ was used in many different ways; however, despite severity, they often considered their emotional experience to be different to their perceived notions of ‘actual’ depression or mental illness. Where anxiety was mentioned, use appeared to refer to an underlying generalised state. Participants drew on complex, sometimes fluid and often theoretically coherent conceptualisations of their emotional distress, as related to, but distinct from, mental disorder. These conceptualisations differ from those frequently drawn on in research and treatment guidelines, compounding the difficulty for general practitioners. Developing models of psychological symptoms that draw on patient experience and integrate psychological/psychiatric theory may help patients understand the nature of their experience and, critically, provide the basis for a broader range of primary care interventions.

 

A qualitative investigation of lay perspectives of diagnosis and self-management strategies employed by people with progressive multiple sclerosis

Julia Frost, Jane Grose, Nicky Britten

This article explores how people with progressive multiple sclerosis give meaning to their experiences. It builds upon the self-management literature, which has captured the tension between the desire for retaining normalcy and the increasing burden of self-management associated with chronic disease progression. This repeat interview study is empirically grounded in 28 interviews with 14 people with progressive multiple sclerosis. We identified gender differences in diagnosis-seeking which impacted subsequent sense-making. Male respondents found a diagnosis of multiple sclerosis difficult to come to terms with, and an enduring sense of loss or anger could inhibit further sense-making. A diagnosis of multiple sclerosis was more difficult to obtain for women respondents, and any sense of certainty that diagnosis provided framed their subsequent sense-making strategies. The complex sequelae of multiple sclerosis require that self-management strategies are both contextual and timely, although even the most accomplished self-managers can lose their sense of self with neurodegeneration. Disease progression can be associated with suicidal ideation, suggesting the need for greater dialogue to ensure that people with multiple sclerosis are adequately supported to fulfil their quality of life at all stages of neurodegeneration. These lay perspectives emphasise the articulation of affect rather than the rendering of a medical diagnosis, although diagnosis may provide a degree of certainty in the short term. The ethos of self-management ensures people attempt to retain their sense of ‘normality’ and existent social roles for as long as possible, but this ethos can negate both one’s ability to self-manage and the management of self.

 

An exploratory study of the experience of fibromyalgia diagnosis in South Africa

Silvie Cooper and Leah Gilbert

Within the conceptual framework of ‘medically-ill-defined’ conditions, this article focuses on the experiences of ‘diagnosis’ through a narrative analysis of fibromyalgia (a chronic musculoskeletal pain disorder) in South Africa. In-depth interviews were used to collect narratives from 15 participants. The findings show how the contested and confusing experience of fibromyalgia diagnosis can be understood, by viewing the interactions that patients have with their practitioners, families, peers and colleagues. The currency of fibromyalgia as a diagnosis and the inequalities present in the South African health care system characterise the experiences of symptom recognition, diagnosis and treatment. The analysis reveals how those living with fibromyalgia search for diagnosis, and struggle to maintain legitimacy for their experience in the complex constellation of porous symptoms that appear infrequently. The findings of this study confirm the existing evidence that shows fibromyalgia to be a challenging illness experience, which is attributed to the lack of clarity and legitimacy, and high contestation that surrounds the condition. Additionally, this study presents the ways that limited access to diagnosis and treatment for fibromyalgia in the South African context shapes this specific illness experience, and the value of using narrative approaches to gain insight into how people live with hidden and poorly understood conditions in this environment.

 

Health and Place

The embodied spaces of children with complex care needs: Effects on the social realities and power negotiations of families

Roberta L. Woodgate, Melanie Zurba , Marie Edwards , Jacquie D. Ripat and Gina Rempel

This paper presents research findings that advance knowledge around the power and agency families with children with complex care needs (CCN). Our conceptual framework uses concepts from geography towards situating the experiences and social realities of family carers within the ‘embodied space of care’. The data originate from a longitudinal qualitative study of Canadian families with children with CCN. Findings reveal that interactions and decision-making processes relating to health and everyday life were complex and socially interconnected, and emphasize the need for provisions for family-based decision-making and enhanced social inclusion of families and the importance of the renegotiation of power.

 

The ward as emotional ecology: Adolescent experiences of managing mental health and distress in psychiatric inpatient settings

Paula Reavey, Jason Poole, Richard Corrigall, Tony Zundel, Daniel Byford, Sarah Sarhane, Mandy Taylor, Eric Taylor, John Ivens, Dennis Ougrin

Previous research on young people’s satisfaction of inpatient services has often relied on the responses of carers and relevant practitioners. It is difficult to ascertain to what extent such reporting accurately represents the satisfaction levels of young people, with emerging research suggesting wide discrepancies. As part of a wider study evaluating the effectiveness of a Supported Discharge Service (SDS) operating within South London & Maudsley NHS Foundation Trust, this paper examines how young people experience inpatient services, on a social and emotional level. Twenty young people, (10 SDS and 10 TAU) participated in a semi-structured visual-interview study to examine their experiences of admission, ward-life and treatment. A thematic decomposition analysis was conducted on the data and specific themes relevant to satisfaction and engagement with inpatient services was examined in-depth. These include a) Behavioural surveillance as care surrogate and b) Managing the delicate emotional ecology of the ward: openness, triggering, sterility and relational engagements. Finally, we explore some of the implications of these inpatient experiences for supported discharge services.

 

“They treat us like we’re not there”: Queer bodies and the social production of healthcare spaces

Talia Meer and Alex Müller

There is significant literature demonstrating the interpenetrability of identity and space, yet there is almost no work that explores the co-production of queer identities and healthcare spaces. We use Lefebvre’s triad of (social) space to explore how the social spaces of South African healthcare facilities shape and are shaped by queer service-users, drawing on data from interviews and focus group discussions with 29 queer service-users and 14 representatives of organisations. Findings reveal that healthcare spaces are produced by the spatial ordering of health policy inattentive to queer health needs; the enduring symbolic representations of queerness as pathological or ‘un-African’; and various identity assertions and practices of individuals, including queer service-users and healthcare providers. As a result, healthcare spaces are overwhelmingly heteronormative, although queer service-users’ subversive practices suggest alternative spatial configurations. However, such resistance relies on individual empowered action and risks disciplining responses. Wider efforts are needed to transform the material and ideological space of healthcare facilities through law and policy reform and continuing professional training for healthcare providers.

 

A place for the heart: A journey in the post-asylum landscape. Metaphors and materiality

Inger Beate Larsen and Alain Topor

The downsizing of psychiatric hospitals has created a new institutional landscape in the local community to support people with severe mental problems in their daily living. This study explores meeting places in Norway from the users’ perspectives. The users used four metaphors to describe these meeting places: “like a home”, “like a family”, “like a landing ground” and “like a trampoline”. The users have decorated the interiors of the meeting places with hearts made from various materials, and these could be considered as symbols of the places. The metaphors used: the hearts and the rooms and interiors, reflect old ideas about calmness and dignity rather than new ideas based on New Public Management.

 

The strategic geographies of global health partnerships

Clare Harrick

Global health partnerships have been hailed as a means of addressing the global health worker shortage, bringing forth health systems strengthening and, therefore, the universal health coverage aspirations of the Sustainable Development Goals. In contrast to other critical engagements with partnerships which have tended to focus on experiences and effects of these partnerships in situ; this paper draws on the example of the UK to explore how partnership working and development agendas have become entwined. Moreover, this entwinement has ensured that GHPs are far from the “global” endeavour that might be expected of global health and instead exhibit geographies that are far more representative of the geopolitics of overseas development assistance than biomedical need.

 

Navigating ‘riskscapes’: The experiences of international health care workers responding to the Ebola outbreak in West Africa

Stephanie Gee and Morten Skovdal

This paper draws on interview data to examine how international health care workers navigated risk during the unprecedented Ebola outbreak in West Africa. It identifies the importance of place in risk perception, including how different spatial localities give rise to different feelings of threat or safety, some from the construction of physical boundaries, and others mediated through aspects of social relations, such as trust, communication and team dynamics. Referring to these spatial localities as ‘riskscapes’, the paper calls for greater recognition of the role of place in understanding risk perception, and how people navigate risk.

 

Science, Technology, and Human Values

Shi (勢), STS, and Theory: Or What Can We Learn from Chinese Medicine?

Wen-Yuan Lin

How might science and technology studies and science, technology and society studies (STS) learn from its studies of other knowledge traditions? This article explores this question by looking at Chinese medicine (CM). The latter has been under pressure from modernization and “scientization” for a century, and the dynamics of these pressures have been explored “symmetrically” within STS and related disciplines. But in this work, CM has been the “the case” and STS theory has held stable. This article uses a CM term, reasoning-as-propensity (shi, 勢), to look at contemporary practices of cancer care in a hospital in Taiwan. It describes how shi (勢) informed the design of a new decoction, Kuan Sin Yin, while also relating to the production of scientific knowledge, biomedical interventions, Buddhist practices, and the patients living with cancer themselves. Does CM’s use of shi (勢) simply confirm the essential and incompatible otherness of CM? Looked at from outside the answer seems to be yes. However, this article explores how STS might change itself—and the theory–practice division in STS—by thinking through shi (勢) in dialogue with its othered object. This opens the possibility of an STS for CM.

 

Ethics Policies and Ethics Work in Cross-national Genetic Research and Data Sharing
Flows, Nonflows, and Overflows

 Klaus Hoeyer, Aaro Tupasela, Malene Bøgehus Rasmussen

In recent years, cross-national collaboration in medical research has gained increased policy attention. Policies are developed to enhance data sharing, ensure open-access, and harmonize international standards and ethics rules in order to promote access to existing resources and increase scientific output. In tandem with this promotion of data sharing, numerous ethics policies are developed to control data flows and protect privacy and confidentiality. Both sets of policy making, however, pay limited attention to the moral decisions and social ties enacted in the everyday routines of scientific work. This paper takes its point of departure in the practices of a Danish laboratory with great experience in international collaboration regarding genetic research. We focus on a simple query, what makes genetic material and health data flow, and which hopes and concerns travel along with them? We explore what we call the flows, the nonflows, and the overflows of material and information, and we document the work producing the flows of health data and biomaterial. We call this work “ethics work” and argue that it is crucial for data sharing though it is rarely articulated in ethics policies, remains inadequately funded, and lacks acknowledgment in policies promoting international data sharing.

 

Social Science & Medicine

The social logic of naloxone: Peer administration, harm reduction, and the transformation of social policy

Rachel Faulkner-Gurstein

This paper examines overdose prevention programs based on peer administration of the opioid antagonist naloxone. The data for this study consist of 40 interviews and participant observation of 10 overdose prevention training sessions at harm reduction agencies in the Bronx, New York, conducted between 2010 and 2012. This paper contends that the social logic of peer administration is as central to the success of overdose prevention as is naloxone’s pharmacological potency. Whereas prohibitionist drug policies seek to isolate drug users from the spaces and cultures of drug use, harm reduction strategies like peer-administered naloxone treat the social contexts of drug use as crucial resources for intervention. Such programs utilize the expertise, experience, and social connections gained by users in their careers as users. In revaluing the experience of drug users, naloxone facilitates a number of harm reduction goals. But it also raises complex questions about responsibility and risk. This paper concludes with a discussion of how naloxone’s social logic illustrates the contradictions within broader neoliberal trends in social policy.

 

The intimate relationship as a site of social protection: Partnerships between people who inject drugs

Tim Rhodes, Jake Rance, Suzanne Fraser, Carla Treloar

Public health research treats intimate partnerships as sites of risk management, including in the management of HIV and hepatitis C transmission. This risk-infused biomedical approach tends to undermine appreciation of the emotional and socially situated meanings of care in intimate partnerships. In this article we explore qualitative interview accounts of the care enacted in partnerships between people who inject drugs, drawing on a 2014 study of 34 couples and 12 individuals living in two locations of Australia. A thematic analysis highlights ‘best friend relationships’, ‘doing everything together’, ‘co-dependency’, and ‘doing normalcy’ as core to narratives of care. As we will argue, the accounts position the care undertaken by couples as at once shaped by day-to-day practices of drug use and by social situation, with the partnership enacting care as a form of social protection, including protection from stigma and other environmental hostilities. The intimacy of doing everything together offers insulation against stigma, yet also reproduces its isolating effects. While the care produced in drug-using partnerships is presented as double-edged, we note how interview accounts are used to deflect the charge that these relationships represent harmful co-dependency. Taken together, the interview accounts negotiate a ‘counter-care’ in relation to normalcy, presenting the intimate partnership between people who use drugs as a legitimate embodiment of care.

 

The problem of choice: From the voluntary way to Affordable Care Act health insurance exchanges

Jessica Mulligan

This article takes a genealogical and ethnographic approach to the problem of choice, arguing that what choice means has been reworked several times since health insurance first figured prominently in national debates about health reform. Whereas voluntary choice of doctor and hospital used to be framed as an American right, contemporary choice rhetoric includes consumer choice of insurance plan. Understanding who has deployed choice rhetoric and to what ends helps explain how offering choices has become the common sense justification for defending and preserving the exclusionary health care system in the United States. Four case studies derived from 180 enrollment observations at the Rhode Island health insurance exchange conducted from March 2014–January 2017 and interviews with enrollees show how choice is experienced in this latest iteration of health reform. The Affordable Care Act (ACA) of 2010 created new pathways to insurance coverage in the United States. Insurance exchanges were supposed to unleash the power of consumer decision-making through marketplaces where health plans compete on quality, coverage, and price. Consumers, however, contended with confusing insurance terminology and difficult to navigate websites. The ethnography shows that consumers experienced choice as confusing and overwhelming and did not feel “in charge” of their decisions. Instead, unstable employment, changes in income, existing health needs, and bureaucratic barriers shaped their “choices.”

 

“Even my sister says I’m acting like a crazy to get a check”: Race, gender, and moral boundary-work in women’s claims of disabling chronic pain

Jane Pryma

Recent research examines how women claim chronic pain in response to gendered moral discourses. However, extant research does not explore how race shapes the moral boundary-work performed by women suffering from disabling chronic pain. Through the qualitative analysis of twenty-four semi-structured interviews with women fibromyalgia sufferers conducted between October 2014 and August 2016 in the U.S.A., I demonstrate how women with fibromyalgia claim chronic pain by doing moral boundary-work, referencing gendered and racialized moral discourses that structure how claims of chronic pain as disability are and are not read as legitimate by doctors, disability bureaucrats and personal networks. Extending Hansen et al.’s work on stigma and the “pathologization of poverty,” I suggest that, per my sample, the different moral discourses deployed in white and Black women’s claims of chronic pain can be explained by the racialized and gendered boundaries of citizenship that structure U.S. welfare and disability politics. Finally, I argue for intersectionality’s relevance to research on moral boundary-work and the medicalization of poverty.

 

Accomplishing professional jurisdiction in intensive care: An ethnographic study of three units

Andreas Xyrichis, Karen Lowton, Anne Marie Rafferty

This paper reports an ethnographic study examining health professional jurisdictions within three intensive care units (ICUs) in order to draw out the social processes through which ICU clinicians organised and delivered life-saving care to critically ill patients. Data collection consisted of 240 h observation of actual practice and 27 interviews with health professionals. The research was conducted against a backdrop of international political and public pressure for national healthcare systems to deliver safe, quality and efficient healthcare. As in many Western health systems, for the English Department of Health the key to containing these challenges was a reconfiguration of responsibilities for clinicians in order to break down professional boundaries and encourage greater interprofessional working under the guise of workforce modernisation. In this paper, through the analysis of health professional interaction, we examine the properties and conditions under which professional jurisdiction was negotiated and accomplished in day-to-day ICU practice. We discuss how staff seniority influenced the nature of professional interaction and how jurisdictional boundaries were reproduced and reconfigured under conditions of routine and urgent work. Consequently, we question theorisation that treats individual professions as homogenous groups and overlooks fluctuation in the flow and intensity of work; and conclude that in ICU, urgency and seniority have a part to play in shaping jurisdictional boundaries at the level of day-to-day practice.

 

Sociology of Health and Illness

Ageing, masculinity and Parkinson’s disease: embodied perspectives

Grant Gibson, Ciara Kierans

Parkinson’s disease (PD) presents as an illness which predominantly affects older men. However older men’s lived experiences of PD, including how they are influenced by age and gender relations has seen little empirical study. Drawing on Watson’s male body schema, this paper explores how men engage with masculinities and ageing in order to make sense and meaning from PD. Data is presented from 30 narrative and semi structured interviews with 15 men of various ages who were living with PD. Findings suggest that PD threatens a visceral embodiment located in the body’s basic movements and intimate functions; a pragmatic embodiment expressed through men’s everyday occupations and an experiential embodiment concerned with emotions and sensations felt within and through the body. In addition, each dimension of men’s embodiment also intersected with the ageing process, a process also shaped in turn by broader social and cultural concerns regarding the positions and possibilities of men’s lives as they move through the life course. This paper concludes by discussing the implications of gender and ageing in understanding men’s experiences of PD.

 

At the margins of biomedicine: the ambiguous position of ‘Registered Medical Practitioners’ in rural Indian healthcare

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

This analysis challenges a tendency in public health and the social sciences to associate India’s medical pluralism with a distinction between biomedicine, as a homogeneous entity, and its non-biomedical ‘others’. We argue that this overdrawn dichotomy obscures the important part played by ‘informal’ biomedical practice, an issue with salience well beyond India. Based on a qualitative study in rural Andhra Pradesh, South India, we focus on a figure little discussed in the academic literature – the Registered Medical Practitioner (RMP) – who occupies a niche in the medical market-place as an informal exponent of biomedical treatment. We explore the significance of these practitioners by tracking diagnosis and treatment of one increasingly prominent medical ‘condition’, namely diabetes. The RMP, who despite the title is rarely registered, sheds light on the supposed formal-informal sector divide in India’s healthcare system, and its permeability in practice. We develop our analysis by contrasting two distinctive conceptualisations of ‘informality’ in relation to the state in India – one Sarah Pinto’s, the other Ananya Roy’s.

 

Theory, Culture, and Society 

Special Issue: Geosocial Formations in the Anthropocene

An Interview with Elizabeth Povinelli: Geontopower, Biopolitics and the Anthropocene

Elizabeth A. Povinelli, Mathew Coleman, Kathryn Yusoff

This article is an interview with Elizabeth Povinelli, by Mathew Coleman and Kathryn Yusoff. It addresses Povinelli’s approaches to ‘geontologies’ and ‘geontopower’, and the discussion encompasses an exploration of her ideas on biopolitics, her retheorization of power in the current conditions of late liberalism, and the situation of the inhuman within philosophical and anthropological economies. Povinelli describes a mode of power that she calls geontopower, which operates through the governance of Life and Nonlife. The interview is accompanied by a brief contextualizing introduction.

 

Configurations

Gut Ecology: Meat Science, Modernity, and Carrion Aversion in Gandhi’s India

Lucinda Cole

This essay examines debates about carrion eating in late nineteenth- and early twentieth-century India. Although proscriptions against carrion eating among the noncaste Hindus were entangled in Indian anticolonial, nationalist, and cow-protection movements, “Gut Ecology” places the subject in the material contexts of bacteriology, the study of zoonotic disease, and the emergence of meat science. The essay focuses on an exchange of letters (1933) between M. K. Gandhi and Dr. G. V. Deshmukh, the first president of the Indian Medical Association, in order to explore historical and theoretical relationships among affective, political, and scientific culture.

 

 

 

Web Roundup: A Hack By Any Other Name by Emily Goldsher-Diamond

31 Mai 2017 - 5:00pm

Hacking has been on our minds for months now, namely due to the American (and now French) presidential election. But hacking has been of interest to scholars for decades, and in many iterations. Hacking has been analyzed as a craft, an aesthetic, a historical practice, a subculture, a form of activism, a mode of resistance, and more. Scholars such as Gabriella Coleman have made it their life’s work to study hacking. Hacking has inspired powerful works of fiction and art. But here we are: hacking in public discourse is largely distilled down into its relationship to the 2016 presidential election (perhaps aside from the large-scale Wannacry hack this month). But there is so much more to hacking, broadly and at this moment in time. Hacking is polysemic, as evidenced by what follows here this month.

What do you think of when you think of a hacker? Probably not one Liverpool billboard that was changed by hackers this week to say, “we suggest you improve your security.” Hackers, in some regard, are a helping profession. Over at The Conversation, you can read about how ethical hacking may help point out otherwise unknown system vulnerabilities. Maybe, as Motherboard suggests, young women who hack will shape the worldHacking can also by legitimized by those in power. Noted in a piece about piracy and the pirate at The American Interest, hackers can have both criminal and political motives. This isn’t new: hackers have been political for as long as there’s been hacking. But it continues to be worth asking: Are they still hackers if they are supported and deployed by the state? Or, maybe, when does a hacker simply become a bug chaser?

Living with the Internet of Things also means that (most) things may also get hacked. What is the Internet of Things? It is partially self explanatory: things now joined with the internet are animated and made lively by their connectivity to the web and to us. It is also, say, a kind of material culture enabled, perpetuated, and created by computing.  At Forbes, Stuart Madnick argues that the Internet of Things has made us vulnerable from nearly every which way, and so what is required is a broad cultural adjustment. Similarly, Keith Waddell argues at The Atlantic that the Internet of Things requires its own code of ethics. This month, we saw hacks on robots (remotely), a soup can, Chipotle, a teddy bear, pacemakers, and even a toy doll (to rob you, of course).

Marketers want to hack our unconscious. What’s next? We can hack our brains. We can hack our biology. We can hack the Anthropocene. What does it mean, today, to hack? What does it mean to be a hack? To do a hack? These are all questions worthy of examination. In an age of increased (in)security and surveillance, both the meaning and reach of hacking continues to expand. These breaches of literal and figurative boundaries stretch the bounds of the imagination and our understanding of the world around us. What will be hacked next? Perhaps it must be our tools for inquiry.

More links of interest:

The history of the quantified self – Cyborgology

“An Interview with Patricia Leavy about Research Design in Contemporary Times” – The Sociological Imagination

“Twitter and Tear Gas: How Social Media Changed Protest Forever” [Excerpt] – Wired

“Designers on Acid: The tripping Californians who paved the way to our touchscreen world” – The Guardian

Bending the Odds: Pedagogy and Dialogue in Large Lecture Courses by Sandra Hyde

8 Mai 2017 - 3:50pm

As academics in large public research universities, I am always amazed that when we speak of an ideal pedagogy, we speak about our small intimate seminars where we have the time and resources to experiment with 25 students or less. In my 13 years of teaching, I look forward to those settings when I get to teach one small undergraduate seminar a year. Over the years, I have also tried to make my large lecture hall shrink by trying to utilize different techniques to foster student based learning and most important, to create more interactive group problem solving and reduce the teacher as lord model of education. While this often works in small seminars, those wonderful nuggets of intimate interactive learning, I find it a challenge to accomplish this when I am in large lecture halls (over 200 students) with limited to graduate student teaching support.

In a large Introduction to Medical Anthropology course (what is called Anthropology 227 at McGill), I have worked over the years to integrate more student-interactive learning. I often compare teaching this course to managing a large ocean-liner with staff of different standing and students who are extremely eclectic as they are drawn from across campus from multiple faculties. For example, students in engineering and medicine will take the course as their one social science requirement and for others they find introduction to medical anthropology intriguing. Students in the humanities are also looking to take their one social science course. There are also medical practitioners and their allied health colleagues often nursing students returning to university to complete their BS. Then there are a few PhD students who want a basic course in medical anthropology as a background for their work in medicine. Finally we have the undergraduate students that run the gamut from those majoring in religion to philosophy to political science to sociology and anthropology. It’s a wonderful mix although a bit daunting to teach. Since coming to Canada and McGill, I made it my goal to share this course with my other two colleagues in medical anthropology, thus we rotate it every two years and I teach it twice every six years. This also helps keep the course fresh and allows me to revise it when it is my turn.

 

Interactive learning in the large classroom.

Like many contemporary research universities, McGill places a lot of emphasis on the technical tools of teaching, such as laser pointers, clickers (a local company offers free MAC tablets to faculty that require them, at a cost to students), video-taping lectures, and video-Skyping guest lectures to name but a few of these techniques. Over time, I find myself like a Buddhist monk where each time I teach the course, I taper down my reliance on these techniques – finding them more like what my former undergraduate advisor Langdon Winner called techniques run out of control. Instead, I try to focus on research that shows students learn better when they use pen and paper to take notes – meaning they can only write down what they remember and know and thus absorb.[i] I create a classroom that allows for both the large lecture format but accompany it with small conference sections that follow the outline of my course that has six content modules. In my undergraduate years, we had weekly discussion sections lead by a graduate student with a small group of 15 students. However, at McGill we do not have the resources or labour to provide weekly conferences with such small numbers. What is a professor to do? I found a way around this by providing 7 small discussion sections a term, or roughly one every other week, where students register for these sections for consistency, collaboration and building group dynamics. The class is organized around 6 modules and for every module there are 5 events – 4 lectures (2 given by me and 1 by a guest lecturer) and 1 small discussion section (between 20 to 25 students) that is run by our graduate teaching assistants who manage 3 of these every five classes, or roughly every two and quarter weeks. I also organize a final review session for the final exam in these small conferences run by the graduate teaching assistants.

The discussion sections are built into the course, where every lecture I conclude with what I call Wiz questions – meaning the questions that I want students ideally to answer after listening to lectures and doing the readings. The Wiz questions are where the teaching assistants begin their bi-weekly discussion sections. I do encourage TAs (graduate students in Anthropology, Medical Anthropology, Transcultural Psychiatry and Public Health) to draw on designs that work for them to experiment with interactive learning styles. Each lecture then builds toward an interactive discussion section and assignments that allow students to play with the material, with the exception of a multiple-choice final exam (thus making time for small discussion sections instead of more grading). I design each assignment around a different learning style so that every student has at least one assignment that speaks to their strengths, including science students who excel at the final multiple-choice test. A caveat is in order: to provide small discussion sections, the only solution for the final assignment is to resort to a multiple-choice test because I have limited teaching assistant hours that preclude another labour intensive graded assignment. I realize this is not ideal; however, I draw on the Wiz questions that we address each week and it is worth no more than 35% of their final grade.

As for integrating interaction in the large lecture hall, I also structure events like debates over controversial medical issues. One year, we took up the question of the right to die and drew on two current cases, one in Oakland California where Right to Life groups were pressuring a local hospital not to take a brain-dead adolescent off life support, and one in Texas, where the laws would not permit a husband to take his wife off life support because she was pregnant. Conveniently, the physical layout of my classroom is divided into three sections where I organize three different positions on a topic and create in-class time for students to discuss their positions with students sitting next to them and also in front and behind them. Having provided three roughly equal positions, I then open of the entire classroom for a debate. In the beginning this means some students are much more loquacious and open, more likely to speak up to a large audience, but usually by the end of the term, a large percentage of the class engages with either those directly sitting next to them and many more speak up as a whole.

For those of you looking to add more interactive learning styles, I hope these suggestions: 1) bi-weekly discussion sections, 2) building Wiz questions into the end of each lecture, 3) providing support to the teaching assistants who run conference sections, and, 4) creating large lecture debates, collectively structure a more low-tech interactive large-lecture classroom.

Download the syllabus here


Sandra Hyde is Associate Professor of Anthropology at McGill University and author of Eating Spring Rice: The Cultural Politics of AIDS in Southwest China (U California Press, 2007).

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

[i] Pam A. Mueller and Daniel M. Oppenheimer (2014). “The Pen is Mightier Than the Keyboard: Advantages of Longhand Over Laptop Note Taking,” Psychological Science, Vol. 25 (6): 1159-1168.

 

From Harry Potter to Jesus – A transfigurative conference report by Laura Perler

4 Mai 2017 - 3:12pm

 

Credit: Transcultural Studies, University of St. Gallen

Conference report on the anniversary conference: ‘Transfigurationen: Medizin macht Gesellschaft macht Medizin’, 17-18 February 2017, organised by the working group Medical Anthropology Switzerland of the Swiss Anthropological Association (SEG), Wiener Dialoge der Medizinanthropologie (Vienna Dialogues on Medical Anthropology) and the Work Group Medical Anthropology of the German Anthropological Association (GAA).

As medical anthropologists, we expect to learn about diverse places and people, and topics ranging from birth to death. We might not, however, anticipate hearing repeatedly about Harry Potter and Jesus. Both were named by multiple panellists at the tri-national conference on ‘Transfigurations’ in Basel as key figures in their quest to grasp the conference’s topic. Transfigurations?! Is it the kind of magical transformation from rat to tea cup as described in JK Rowling’s novels, or does it reference the pivotal moment when Jesus was transfigured and became radiant in glory upon a mountain? If it be either of these, what is the connection to medical anthropology? Transfigurations?! Is it just an intellectual phantasm of the conference organisers, bored by transformations and figurations, and inspired by the widely used trans– prefix? Transfigurations?! Or is it in the end just another word for assemblages? Read this conference report and you might be inspired by the diverse interpretations and applications of the term, and perhaps even feel yourself transfigured by transfigurations…

 

Panels

The first panel, ‘Therapeutic landscapes: Pharmaceuticals, commodification and epistemologies’, was chaired by Angelika Wolf (Freie Universität Berlin). Stephan Kloos (Austrian Academy of Sciences) began with his talk on the transfigurations of traditional Asiatic medicine. Kloos suggested that we replace Charles Leslie’s older term ‘Asian medical systems’ with a new one, ‘Asian medicine industry’, in order to account for the new assemblages of globalised medical processes and elements that bring together the objects, people, knowledge and pharmaceuticals involved in the dissemination of Asian medicine. Sandra Bärnreuther (University of Zurich) presented a historical overview of one specific pharmaceutical and its production process in the context of (post)colonialism. Focusing on the practices of a Dutch company that extracts HCG[1] from the urine of pregnant Indian women in order to produce their pharmaceutical products, Bärnreuther highlighted the entanglements of politics, economy and technology. Mirko Uhlig (Johannes Gutenberg University Mainz) shed light on the self-perceptions and perceived boundaries between psychotherapists and spiritual healers in Germany, arguing that the multiple ascriptions, demarcations and entanglements concerning spirituality form a new set of transfigured therapeutic techniques. Finally, Márcio da C. Vilar (Leipzig University) asked how scientific innovation, established biomedicine and informal health care co-exist and are linked in contemporary Brazil. Negotiations over immunostimulant drugs in institutions and on social media served as an example for current ‘life assemblages’ and an expression of an ongoing transfiguration of established biomedicine for autoimmunity. A key message in this panel was the crucial point of (geo)political and technological change, which might constrict established transfigurations or even lead to new transfigured relations.

The second panel entitled ‘Good aging, dignified dying: Bureaucracy, biopolitics and the value of life’, chaired by Piet van Eeuwijk (University of Basel), focused on transfigurational processes at the end of the life course. The first two papers reflected on palliative care. In her talk ‘Grace under pressure’, Martine Verwey (unaffiliated academic, Zurich) presented thoughts on the palliative care of a terminally ill person with ALS and questioned whether transfiguration can be a useful concept to think about the dying body. Andrea Buhl (University of Basel) presented extracts from her PhD study on palliative care in a Tanzanian cancer hospital. Multi-levelled influences transfigure the practice of care giving at the end of life, from the emotional involvement of care givers to more widely used material care such as pain medication. The next paper also reflected on the transfiguration of care in urban Tanzania. Andrea Kaiser-Grolimund (University of Basel) engaged the audience with a narrative about elderly persons in Dar es Salaam and their practices of care for the self, and asked the following question: If we understand transfiguration as a fundamental change, are we as anthropologists able to explore it at a local level? Finally, Marcos Freire de Andrade Neves (Universidade Federal do Rio Grande do Sul, UFRGS and Freie Universität Berlin) analysed the complexities of dealing and engaging with bureaucratic interventions when it comes to receiving the ‘green light’ for assisted suicide in a multinational European setting.

Hilde Schäffler (Public Health Services, Bern) chaired the third panel entitled ‘Between precarisation and empowerment: Marginality, participation and economisation in health care provision’, which paid attention to health care provision and the transfigurations of (economic) values and bodies. In the first presentation, Mustafa Abdalla (Freie Universität Berlin) talked about the professionalization of patients in Egypt. With poverty on the rise and medical resources scarce, patients offer their sick bodies in exchange for money, medical care and knowledge, transforming their afflictions into economic value on disease markets. Maria Lidola (Freie Universität Berlin) discussed the transfiguration of health care provision through family clinics in Rio de Janeiro’s favelas. Once more, the concept of transfiguration allowed for the incorporation of different scales and controversial local conceptions and provided for a rich analysis. The same applied to the paper by Melina Rutishauser (University of Basel) on participation and financialisation in Tanzania’s health sector. In her paper, Rutishauser discussed the transfiguration of participatory approaches in the funding of health insurance and related daily practices by patients.

In the panel entitled “Good care?”: Ideologies of reproduction and aging’ chaired by Claudia Lang (CERMES3, Paris), three different presentations were given. Sandra Staudacher (University of Basel) presented her project on ‘Aging, agency and health in Tanzania’. She argued that sudden shifts and moments of crisis in health transfigure local care arrangements and social structures. Transfigurations were thus not only presented as a form of socioeconomic process, but also as manifold interdependencies between people and (transnational) social and geographical places that trigger change. In her presentation ‘Evidence versus eminence – Transfigurations of the “good birth”’, Cecilia Colosseus (University of Mainz) focused on the theological meaning of transfiguration as a kind of romanticisation. Presenting the discourses from both advocates of clinical birth as well as defenders of a non-clinical birth regarding what a ‘good birth’ means, Colosseus demonstrated how the female body is the central locus in which rationality and naturalness are transfigured through their entanglement. Laura Perler and Carolin Schurr (University of St. Gallen) presented the transfigurations of liberal eugenics and state biopolitics in the Mexican bioeconomy. Through a focus on the reproductive biographies of egg donors, the entanglements of discourses on reproduction that are infused with race and class became tangible. This panel highlighted transfiguration as a multidimensional interweaving process that includes specifically temporal and spatial dimensions.

Dominik Mattes (Freie Universität Berlin) chaired the panel Repositioning: Bio-social identities between self-positioning and external ascriptions’, which was centred on conflicting and transfigured biosocial identities positioned between local and global areas of influence and understanding. In the first presentation, Elena Jirovsky (Medical University of Vienna) talked about female circumcision/female genital mutilation in Burkina Faso and the transfiguration of meaning that the circumcised female body has undergone as this contested practice is morally and politically challenged at the global level. The second and third papers analysed various effects of the changing understanding of albinism in Tanzania, once the global outcry over the trade in body parts of people with albinism had ebbed away. Giorgio Brocco (Freie Universität Berlin) related a story of such changing understandings of ‘glocally’ defined bodies. His paper on the understanding of albinism as a disability in Tanzania explored existing social classifications and the ways in which individuals with albinism find themselves caught between discourses on victimhood and deservingness and disability activism. In her presentation, Susanne Kathrin Hoff (Johannes Gutenberg University Mainz) elaborated on the issue further by extending her analysis to strategies of traditional Tanzanian healers and their need to reconfigure their practices in the wake of the transfigured understanding of albinism. The final presentation by Francesca Rickli (University of Zurich) brought the audience back to Switzerland with an analysis of senior citizens with mobility disabilities who deal with their bodies’ transfigured meaning in everyday practice in a context of changing aging paradigms. This panel showed that at a specific moment of analysis, transfigurations can be ‘incomplete’ and may lead to the absence of a corresponding change in terms of infrastructure.

In the panel ‘Professional aspirations in the health care sector: Mobility and translation processes’, chaired by Eva-Maria Knoll (Austrian Academy of Sciences), Christiane Falge (Hochschule für Gesundheit, Bochum) and Magdalena Stülb (Hochschule Koblenz) offered an insight into an ongoing research project on the transnational mobility of doctors in Germany, and the strategies of foreign doctors with the experience of professional exclusion and ascription. Judith Schühle (Freie Universität Berlin) discussed transfigurations in the Nigerian biomedical landscape. Through the narrations of health care professionals who have migrated abroad, but have later become involved again as health care professionals in their country of origin, Schühle examined the consequences and multiple frictions of such ‘medical remittances’. Johanna Gonçalves Martín (University of Cambridge and Universitätsklinik Dresden) analysed transformations of knowledge and practices in clinical spaces between Yanomami health workers and doctors as ‘partial translations’. Translations were presented as intentionally incomplete, sustaining rather than erasing differences and resulting in enhanced health. This assessment made clear that translations are always perspectivist and result in real bodily transformations. Lisa Peppler (University of Göttingen) illustrated the discursive process of ethnic attributions to doctors from Turkey as intertwined with the discovery of ‘the Turkish patient’. This so-called Turkish patient was presented as part of a broader discursively produced social figure, through which people formerly categorised as guest workers were assigned particular ethnic traits. Subsequently, migrant doctors were transfigured through these processes into ‘Turkish doctors for Turkish patients’.

25/10/5 years of Medical Anthropology

Photo credit: Rebekah Hoeks

 

Following the first two rounds of parallel panels on Friday, the halls of the main building of the University of Basel were buzzing with ideas and new conceptions about what transfiguration as a concept might have in store for analyses in medical anthropology and beyond. Sociologist Elisio Macamo (University of Basel) kept the discussants as well as the audience on edge with his engaging and witty guidance through the round table on the structure, relevance and visions of medical anthropology in Germany, Austria and Switzerland. Hansjörg Dilger (Freie Universität Berlin), Bernhard Hadolt (University of Vienna) and Brigit Obrist (University of Basel) represented the guild of the founding members of the three national medical anthropology associations, and Mira Menzfeld (University of Cologne), Elena Jirovsky (Medical University Vienna) and Constanze Pfeiffer (Swiss Tropical and Public Health Institute Basel) spoke for junior scientists within and beyond academic medical anthropology.

Throughout the discussion, the audience received a history lesson of sorts about how medical anthropology has evolved in the three German-speaking countries, from being the interest of a handful of engaged students who decided to read Arthur Kleinman in the early 1990s up till today. Medical anthropology in Austria, Germany and Switzerland has become a sub-discipline with broad radiant power. From engaging with practitioners and applying knowledge gained in fieldwork to practice, and as a source of new and cutting-edge theoretical approaches, as a field it has never stopped re-inventing and transfiguring itself. It has also become clear that the sub-discipline, despite its growing global relevance, needs to be anchored in national academic communities (Saillant and Genest, 2005; Dilger and Hadolt 2015) and gain momentum locally in order to become academically and politically relevant.

Medical anthropology ‘in practice’

Photo credit: Rebekah Hoeks

 

In the World Café section entitled ‘Medical anthropology in different fields: Possibilities and limits, we were invited to reflect in a collective process on our role as medical anthropologists in different spheres outside of the classic academic context and the conditions needed for such a successful transfer of anthropological knowledge into more applied realms. The group discussions focused on four different fields (NGOs, the public health sector, contract research and education), yet the outcomes were surprisingly similar: the main strength of medical anthropologists was seen as the ability to reflect upon complex situations and, no less important, to be reflexive about our own position. Other points that were often named as strengths were medical anthropologists’ sensitivity to difference, opposition to culturalisation, and the innate linking of micro and macro levels. Profound knowledge of qualitative methods and a sensibility for people ‘in the field’ complete these skills.

There was a general call for a more solid understanding of quantitative methods on the part of anthropologists. While our ability to reduce complexities without being banal and our skills in translating between different social worlds were barely questioned, we need to rethink our use of language to make our message understood. Bridging the gap to our conference, transfiguration may be a fruitful topic for a meeting of medical anthropologists, but might not be the most comprehensible term when communicating with the outside world. Finally, there was not only a stated need to have more of an influence on practice, but also to prepare students for professional engagement outside the realm of the university.

 

Suicido economico: A keynote by Andrea Muehlebach

In her fascinating keynote lecture, Andrea Muehlebach (University of Toronto) presented an analysis of the phenomenon of ‘economic suicide’ in contemporary Italy. Since the onset of the global financial crisis, death by self-immolation has garnered huge media attention and is estimated to account for about 6% of all Italian suicides. Muehlebach’s sharp analysis illustrated the nexus of individual suffering, politics and economics in the act of self-immolation. Following Durkheim, she stated that it is not poverty per se, but the drifting apart of a social system, that can serve as a reason for suicide. Referencing Emily Martin’s (2007) work on manic behaviour and its connection to financial markets, which highlights the bipolar tendency of the financial sector, Muehlebach’s lecture related this analysis to the situation of people at the bottom of the economic scale who have to deal with the unforeseeable outcomes of the ‘bipolar system’ that neoliberal economies have become. Self-immolation, or other suicidal acts, which may at first sight seem to be a sign of individual insanity, turn out to be symptoms of an insane economic system. In concluding, her analysis pointed to a troubling finding: these suicides are the embodiment of the economic crisis; the transfiguration of individual suffering into an outrageous accusation and a last radical revolt against a failed system. We fully agree with Janina Kehr (University of Zurich), who emphasised the groundbreaking potential of Muehlebach’s work for medical anthropology in her introduction to the keynote lecture.

Ready for transfiguration?

Are you convinced yet? We must admit that we were sceptical at the beginning, too. In some of the papers, transfiguration was used as a description of processes that changed a subject or object. In these instances, the distinction from ‘transformation’ is not necessarily persuasive. During the course of the conference, however, we learnt to appreciate the manifold possibilities and avenues of creativity that this new concept can initiate, and to recognise that the term ‘transfiguration’ entails potential analytical advantages over other terms such as ‘transformation’. There is no doubt that a more structured approach is needed to develop transfigurations further and to present it as a valuable conceptual tool.

In the final discussion of the conference, a first step towards this goal was taken: Hansjörg Dilger (Freie Universität Berlin), Bernhard Hadolt (University of Vienna) and Brigit Obrist (University of Basel) convincingly summarised the collective brain power of the conference participants and presented transfiguration as a useful concept to analyse the complexities that medical anthropology deals with. In a nutshell, transfiguration combines assemblage (cf. Deleuze 1987, Mbembe, 2003), transformation and formation (cf. Elias 2000), but the trans adds a processual nature and references the open-ended but also intertwined nature of many of the cases we study.

To say that we were completely transfigured by these two days spent in Basel might therefore be premature. Yet inspiration was definitely sparked by the mixture of different formats and the space to appreciate the rich facets of our engaged, applied and theoretical sub-discipline, and the possibility to share ideas and collaborate in this 48-hour long think tank.

 

Co-published by Somatosphere and the Collaborative Blog Medizinethnologie: Body, Health and Healing in an Interconnected World.

 

Laura Perler is a PhD candidate at the University of St. Gallen, currently exploring issues around egg donation arrangements between Switzerland and Spain through a multi-local ethnographic research project.

Francesca Rickli is a PhD candidate at the University of Zurich and a member of the research group Disability & Technology. Her study analyses how senior citizens with mobility disabilities in Switzerland negotiate positive aging paradigms and bureaucratic structures in order to live independent lives at home.

 

References

Deleuze, Gilles. 1987. A Thousand Plateaus: Capitalism and Schizophrenia. Minneapolis: University of Minnesota Press.

Dilger, Hansjörg, and Bernhard Hadolt. 2015. Medicine in Context. Towards a Social and Cultural Anthropology of Medicine(s) in an Interconnected World. In: Medicine, Anthropology, Theory 2 (3), 128-153.

Elias, Norbert. 2000. The Civilizing Process: Sociogenetic and Psychogenetic Investigations. Revised edition. Oxford; Malden, Mass: Blackwell Publishing.

Martin, Emily. 2007. Bipolar Expeditions: Mania and Depression in American Culture. Princeton: Princeton University Press.

Mbembe, Achille. 2003. “Necropolitics.” Public Culture 15 (1): 11–40.

Saillant, Francine, and Serge Genest (eds.). 2005. Anthropologie médicale: ancrages locaux, défis globaux. Québec: Les Presses de l’Université Laval.

 

[1] HCG is short for human chorionic gonadotropin, produced by the placenta after conception. It can be extracted from the urine of pregnant women or can be produced from cultures of genetically modified cells.

In the Journals – April 2017 by Danya Glabau

2 Mai 2017 - 7:09pm

Critical Public Health

On difference and doubt as tools for critical engagement with public health

Catherine M. Will

This paper argues that critical public health should reengage with public health as practice by drawing on versions of Science and Technology Studies (STS) that ‘de-centre the human’ and by seeking alternative forms of critique to work inspired by Foucault. Based on close reading of work by Annemarie Mol, John Law, Vicky Singleton and others, I demonstrate that these authors pursue a conversation with Foucault but suggest new approaches to studying contemporary public health work in different settings. Proposing that we ‘doubt’ both the unity of public health and its effects, I argue that this version of STS opens up a space to recognise multiplicity; to avoid idealising what is being criticised; and to celebrate or care for public health practices as part of critique. Finally I oppose the view that considering technologies, materials and microbes leads to micro-level analysis or political neutrality, and suggest that it allows us to reframe studies of public health to account for inequalities and to draw attention to weak or retreating states, active markets and the entangled relations of humans and non-humans across the world.

 

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 and 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.

 

Medical Anthropology

Narrating the Future: Population Aging and the Demographic Imaginary in Thailand

Felicity Aulino

Middle-aged, working- and middle-class people in urban Northern Thailand are using demographic categories to imagine their future identities as ‘senior citizens’. I here introduce the term demographic imaginary to provide a conceptual framework for understanding how characterizations of the population at large are constructed, take hold, and shape group identification. More than simply justification for study and action, demographic categories and prognoses are key components of the social world made visible in narratives at the micro- and macro-social levels. With careful ethnographic attention to the stories people tell and those they refuse, I argue a synchronic future is at play in the present, underscoring the importance of narratives about the future for the lived experience of today


Markets and Molecules: A Pharmaceutical Primer from the South

Dwaipayan Banerjee

The Indian pharmaceutical industry has historically manufactured low-cost drugs for the global poor. Activist mobilizations at the height of the HIV/AIDS epidemic revealed a vast cost gap between global brands and Indian generics, much to the embarrassment of Euro-American corporations that were in the habit of pricing drugs for only the wealthy or well insured. As new drug access controversies focus on anticancer therapies, they reveal new flows of international capital, emergent genetic technologies, and increasingly coercive trade regimes. Together these favor multinational corporate oligopolies, which imperil the legacy of HIV/AIDS activism and the future availability of essential life-saving drugs for the work of global public health. In this essay, I describe how the future of the right to drug access rests uneasily, and potentially calamitously, on a shifting balance of power between global south interests and Euro-American pharmaceutical capital.



Neoliberal Optimism: Applying Market Techniques to Global Health

Yuyang Mei

Global health and neoliberalism are becoming increasingly intertwined as organizations utilize markets and profit motives to solve the traditional problems of poverty and population health. I use field work conducted over 14 months in a global health technology company to explore how the promise of neoliberalism re-envisions humanitarian efforts. In this company’s vaccine refrigerator project, staff members expect their investors and their market to allow them to achieve scale and develop accountability to their users in developing countries. However, the translation of neoliberal techniques to the global health sphere falls short of the ideal, as profits are meager and purchasing power remains with donor organizations. The continued optimism in market principles amidst such a non-ideal market reveals the tenacious ideological commitment to neoliberalism in these global health projects.

 

Pathogenic Policy: Immigrant Policing, Fear, and Parallel Medical Systems in the US South

Nolan Kline

Medical anthropology has a vital role in identifying health-related impacts of policy. In the United States, increasingly harsh immigration policies have formed a multilayered immigrant policing regime comprising state and federal laws and local police practices, the effects of which demand ethnographic attention. In this article, I draw from ethnographic fieldwork in Atlanta, Georgia, to examine the biopolitics of immigrant policing. I underscore how immigrant policing directly impacts undocumented immigrants’ health by producing a type of fear based governance that alters immigrants’ health behaviors and sites for seeking health services. Ethnographic data further point to how immigrant policing sustains a need for an unequal, parallel medical system, reflecting broader social inequalities impacting vulnerable populations. Moreover, by focusing on immigrant policing, I demonstrate the analytical utility in examining the biopolitics of fear, which can reveal individual experiences and structural influents of health-related vulnerability.

 

“A Body Like a Baby”: Social Self-Care among Older People with Chronic HIV in Mombasa

Josien de Klerk and Eileen Moyer

As part of the chronic disease paradigm now widely used for HIV in sub-Saharan Africa, antiretroviral treatment programs emphasize self-care. In the informal settlements of Mombasa, Kenya, the management of stress—associated with economic precariousness—plays a significant role in self-care practices and ideologies. Based on ethnographic fieldwork, we examine how local narratives of stress and self-care intertwine with social responsibilities of older HIV-positive people. For older Mombassans, living with ‘chronic’ HIV means living with an unpredictable body, which affects how they are able to care for their kin. The physical reality of living with HIV thus shapes relational networks, making self-care a social practice. While, for some self-care entails managing the body so that its needs are hidden from loved ones, a kind of ‘protective secrecy,’ others enlist the support of their children and grandchildren in managing their body, and in that process subtly redefine generational expectations and responsibilities.

 

Assisted Suicide as a Remedy for Suffering? The End-of-Life Preferences of British “Suicide Tourists”

Naomi Richards

The highly charged debate about the moral status of assisted suicide features regularly in the news media in medically advanced countries. In the United Kingdom, the debate has been dominated in recent years by a new mode of death: assisted suicide in Switzerland, so-called suicide tourism. Drawing on in-depth interviews with people who were actively planning on ‘going to Switzerland,’ alongside participant-observation at a do-it-yourself self-deliverance workshop, I discuss how participants arrived at their decision to seek professionalized assistance. In doing so, I explore the constituent elements of people’s suffering, examining how participants justified, rationalized, or sought authentication from a doctor for their decision to die in light of their own belief systems and aesthetic preferences for a good death.

 

Sensing the Airs: The Cultural Context for Breathing and Breathlessness in Uruguay

Megan Wainwright

The sensory experience of breathing, particularly the sensation of breathlessness in the case of chronic obstructive pulmonary disease (COPD), is a rich though understudied topic in medical anthropology. Fieldwork in Uruguay made it clear to me that to study the sensorial experience of breathlessness, I would also have to study the widely shared cultural conceptualizations and practices surrounding air, breath, and health. In this article, I illustrate ethnographically how the experience of breathing and breathlessness is closely tied to perceptions of air outside the body – in particular humidity, temperature change, wind, and contamination. In conceptualizing breath as the mechanism and air the medium for environmental embodiment, I bring together sensorial medical anthropology, anthropology of the body, and the anthropology of wind and climate. My findings, in light of similar findings across contexts, suggest that a body transformed by COPD is hyperperceptive and hypersensitive to changes in air.

 

Medicine Anthropology Theory (open access)

Lost in translation?: On collaboration between anthropology and epidemiology

Denielle Elliott and Timothy K. Thomas

This rather unorthodox essay is a dialogue between an anthropologist and an epidemiologist, both of whom were involved with a large-scale collaborative ethnographic project exploring medical field studies, or ‘trial communities’, in western Kenya. Reflecting on their involvement with this project, the authors consider the pragmatics of what ‘collaboration’ represents in different disciplines and how it is enacted. The dialogue, which included a follow-up interview after the research was completed, highlights the expectations and tensions in such collaborative projects and offers the epidemiologist an opportunity to highlight the ideas, methods, and possibilities that he perceived as being ‘lost in translation’ between sociocultural anthropology and experimental medicine. We raise critical issues regarding the disjuncture between epidemiological and anthropological practices in research design, methods, epistemology, and collaboration, with the hopes of provoking more discussions regarding best practices in collaborative research projects.

 

A research alliance: Tracking the politics of HIV-prevention trials in Africa

Kristin Peterson and Morenike Folayan

This article explores a research alliance across fields and continents in the wake of the early and controversial HIV-prevention clinical trials of pre-exposure prophylaxis (PrEP). Our research set out to understand why three trial arms prematurely closed while another was refused approval from the relevant institutional review board. We conducted ethnographic research on ‘what happened’ at two of the sites. Over time our research strategy cohered around unearthing and exploring rapidly disappearing knowledge. We analyze insider/outsider politics, the power of global public-private partnerships, and the forms of scientific knowledge (located in African countries) that get left behind in the process.

 

Philosophy, Ethics, and Humanities in Medicine

The wizard behind the curtain: programmers as providers (open access)

Mark A. Graber and Olivia Bailey

It is almost universally accepted that traditional provider-patient relationships should be governed, at least in part, by the ethical principles set forth by Beauchamp and Childress (Beauchamp and Childress, Principles of biomedical ethics, 1979). These principles include autonomy, beneficence, non-maleficence and justice (Beauchamp and Childress, Principles of biomedical ethics, 1979). Recently, however, the nature of medial practice has changed. The pervasive presence of computer technology in medicine raises interesting ethical questions. In this paper we argue that some software designers should be considered health care providers and thus be subject the ethical principles incumbent upon “traditional” providers. We argue that these ethical responsibilities should be applied explicitly rather than as a passive, implicit, set of guidelines.

 

Science, Technology and Society

Humanitarian Innovations and Material Returns: Valuation, Bio-financialisation and Radical Politics

Anna M. Agathangelou

This article critically examines the global humanitarian innovation movement by conjuncting it with the stem cell biotech sector to trace how in the assemblage of matter and code conflicts emerge about notions of suffering, pain, enhancement as well as markets that alter the very material forms of life and economy. In the first section, I look at two things simultaneously: a bio-humanitarian project—the Cypriot search for and DNA identification of the post-war missing—and clinical trials performed by the biotech corporate sector. I trace their respective methods of value and valuation as not only dependent social molecuralised practices but also as translation technologies of kinship, creation of new notions of life and death and governance. In the second section, I take a close look at the emergence of humanitarian and clinical labour as a global assemblage to show how humanitarian organisations and transnational corporations orient themselves towards certain labour assemblages in the search ‘anywhere’ to learn about, borrow and translate technologies supporting the ‘business’ of empire. I finish with broader theoretical implications of the humanitarian work post war and the clinical labour of patients in stem cell therapies.

 

Biopolitical Excess: Techno-Legal Assemblage of Stem Cell Research in India

Amit Prasad

Stem cell research on cardiac patients at the All India Institute of Medical Sciences (AIIMS), which was disclosed through the media in 2005, created a storm. On the one hand, it was celebrated as a ‘global first in pioneering stem cell medicine’. On the other hand, not only the AIIMS study, but, more broadly, stem cell research and therapy in India was criticised for ‘tall claims [and] questionable ethics’. The responses of the policymakers and regulators in India were equally divergent. How are we to understand the contingency and unpredictability of the regulatory regime in India? The answers to this and other related questions are often presented through a regulatory fix—countries such as India need to tighten their regulatory regime. The need for a legally binding regulatory regime is undeniable; nevertheless, a narrow focus on a regulatory fix fails to explain several issues. In this article, I analyse the stem cell research on cardiac patients at AIIMS. Through a focus on epistemic, ethical and juridical assemblage of stem cell research, I highlight the inescapable contingency in the translation between ‘governmental rationality’ and ‘the practice of government’ and show how this reflects biopolitical excess.

 

Social Science & Medicine

Changing the navigator’s course: How the increasing rationalization of healthcare influences access for undocumented immigrants under the Affordable Care Act

Laura López-Sanders

A number of researchers have shown that brokers (e.g., navigators and street-level bureaucrats) bridge access to healthcare services and information for immigrant patients through rich personal relationships and a mission of ethical care. An open question remains concerning how the increasing rationalization of healthcare over the past few decades influences brokerage for undocumented immigrant patients. Drawing from fieldwork and interviews conducted in California, as the Affordable Care Act (ACA) was implemented, I develop the concept of the “double-embedded-liaison.” While other studies treat brokers as acting either as gatekeepers or patient representatives, this study explains how brokers simultaneously operate on multiple planes when new roles are added. I argue that with more formalization and scrutiny at health centers, the impact of brokerage is destabilized and, subsequently, diminished. Two consequences of the double-embedded-liaison brokerage form are: (1) some brokers become disillusioned and exit –resulting in the loss of valuable resources at the health centers, and (2) immigrants move away from the health centers that historically served them. In looking at brokers’ simultaneous performance as gatekeepers and representatives, this research extends brokerage typologies and street-level bureaucracy arguments that largely treat brokerage in a mono-planar rather than in a bi-planar mode. Furthermore, in examining the risks and opportunities brokerage brings to addressing health disparities, the study provides insights into the effects of replacing the ACA or repealing it all together in the Post-Obama era.

 

Where biomedicalisation and magic meet: Therapeutic innovations of elite sports injury in British professional football and cycling

Alex Faulkner, Michael McNamee, Catherine Coveney, and Jonathan Gabe

Injury is a conspicuous feature of the practice and public spectacle of contemporary elite sports. The paper argues that the ‘biomedicalisation’ thesis (medico-industrial nexus, techno-scientific drivers, medical optimisation, biologisation, the rise of evidence and health surveillance) goes some way to capturing the use in elite sports injury of some highly specialised mainstream therapies and some highly maverick biological therapies, which are described. Nevertheless, these main strands of biomedicalisation do not capture the full range of these phenomena in the contexts of sports medicine and athletes’ practices in accessing innovative, controversial therapies. Drawing on multi-method qualitative research on top-level professional football and cycling in the UK, 2014–2016, we argue that concepts of ‘magic’ and faith-based healing, mediated by notions of networking behaviour and referral systems, furnish a fuller explanation. We touch on the concept of ‘medical pluralism’, concluding that this should be revised in order to take account of belief-based access to innovative bio-therapies amongst elite sportspeople and organisations.

 

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 and Heather Ureksoyb

Syndemics occur when populations experience synergistic and multiplicative effects of co-occurring epidemics. Proponents of syndemic theory highlight the importance of understanding the social context in which diseases spread and cogently argue that there are biocultural effects of external stresses such as food insecurity and water insecurity. Thus, a holistic understanding of disease or social vulnerability must incorporate an examination of the emotional and social effects of these phenomena. 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.

 

Feeding premature neonates: Kinship and species in translational neonatology

Mie S. Dam, Sandra M. Juhl, Per T. Sangild, and Mette N. Svendsen

Kinship, understood as biogenetic proximity, between a chosen animal model and a human patient counterpart, is considered essential to the process of ‘translating’ research from the experimental animal laboratory to the human clinic. In the Danish research centre, NEOMUNE, premature piglets are fed a novel milk diet (bovine colostrum) to model the effects of this new diet in premature infants. Our ethnographic fieldwork in an experimental pig laboratory and a neonatal intensive care unit (NICU) in 2013–2014 shows that regardless of biogenetics, daily practices of feeding, housing, and clinical care hold the potential for stimulating and eroding kinship relations between human and nonhuman actors. In the laboratory, piglets and researchers form ‘interspecies-milk-kinships’ that entail the intimate care crucial to keeping the compromised piglets alive during the experiments, thereby enhancing what the researchers refer to as the ‘translatability’ of the results. In the NICU, parents of premature infants likewise imagine a kind of interspecies kinship when presented with the option to supplement mother’s own milk with bovine colostrum for the first weeks after birth. However, in this setting the NICU parents may perceive the animality of bovine colostrum, and the background information obtained in piglets, as a threat to the infants’ connection to their biological parents as well as the larger human collective. Our study argues that the ‘species flexibility’ of premature beings profoundly shapes the translational processes in the field of neonatology research.

 

Social Studies of Science

Controlling new knowledge: Genomic science, governance and the politics of bioinformatics

Brian Salter and Charlotte Salter

The rise of bioinformatics is a direct response to the political difficulties faced by genomics in its quest to be a new biomedical innovation, and the value of bioinformatics lies in its role as the bridge between the promise of genomics and its realization in the form of health benefits. Western scientific elites are able to use their close relationship with the state to control and facilitate the emergence of new domains compatible with the existing distribution of epistemic power – all within the embrace of public trust. The incorporation of bioinformatics as the saviour of genomics had to be integrated with the operation of two key aspects of governance in this field: the definition and ownership of the new knowledge. This was achieved mainly by the development of common standards and by the promotion of the values of communality, open access and the public ownership of data to legitimize and maintain the governance power of publicly funded genomic science. Opposition from industry advocating the private ownership of knowledge has been largely neutered through the institutions supporting the science-state concordat. However, in order for translation into health benefits to occur and public trust to be assured, genomic and clinical data have to be integrated and knowledge ownership agreed upon across the separate and distinct governance territories of scientist, clinical medicine and society. Tensions abound as science seeks ways of maintaining its control of knowledge production through the negotiation of new forms of governance with the institutions and values of clinicians and patients.

 

Clinical prediction and the idea of a population

David Armstrong

Using an analysis of the British Medical Journal over the past 170 years, this article describes how changes in the idea of a population have informed new technologies of medical prediction. These approaches have largely replaced older ideas of clinical prognosis based on understanding the natural histories of the underlying pathologies. The 19th-century idea of a population, which provided a denominator for medical events such as births and deaths, was constrained in its predictive power by its method of enumerating individual bodies. During the 20th century, populations were increasingly constructed through inferential techniques based on patient groups and samples seen to possess variable characteristics. The emergence of these new virtual populations created the conditions for the emergence of predictive algorithms that are used to foretell our medical futures.

 

Transcultural Psychiatry

Mass fainting in garment factories in Cambodia

Maurice Eisenbruch

This paper reports an ethnographic study of mass fainting among garment factory workers in Cambodia. Research was undertaken in 2010–2015 in 48 factories in Phnom Penh and 8 provinces. Data were collected in Khmer using nonprobability sampling. In participant observation with monks, factory managers, health workers, and affected women, cultural understandings were explored. One or more episodes of mass fainting occurred at 34 factories, of which 9 were triggered by spirit possession. Informants viewed the causes in the domains of ill-health/toxins and supernatural activities. These included “haunting” ghosts at factory sites in the wake of Khmer Rouge atrocities or recent fatal accidents and retaliating guardian spirits at sites violated by foreign owners. Prefigurative dreams, industrial accidents, or possession of a coworker heralded the episodes. Workers witnessing a coworker fainting felt afraid and fainted. When taken to clinics, some showed signs of continued spirit influence. Afterwards, monks performed ritual ceremonies to appease spirits, extinguish bonds with ghosts, and prevent recurrence. Decoded through its cultural motifs of fear and protest, contagion, forebodings, the bloody Khmer Rouge legacy, and trespass, mass fainting in Cambodia becomes less enigmatic.

‘Malignant: How Cancer Becomes Us’ / a conversation with Lochlann Jain by Tara Mahfoud

2 Mai 2017 - 3:28pm

In the Stanford Hospital car park, there is a sign that reads “WARNING: This garage contains gasoline and diesel engine exhaust which is known to the State of California to cause cancer and/or reproductive toxicity.” The paradox is deadly – one runs the risk of developing cancer on their way to cancer treatment. The sign blatantly highlights the starting point of Lochlann Jain’s analysis of cancer in her 2014 award-winning book Malignant: How Cancer Becomes Us, which is to understand “the ways that key aspects of the economy involve both causing and treating cancer” (p. 12). Jain showed the image of that sign, taken from her book, during her talk at the Department of Global Health and Social Medicine’s 2015 Public Lecture at King’s College London. Malignant is an ethnographic investigation into how cancer, despite the millions spent to cure and prevent it, remains deeply entrenched in so many aspects of American life and culture. Jain uses her own cancer experience to reflect on prognosis and treatment, time and lifespans, screening and preventative treatment, misdiagnosis and malpractice, IVF and hormones, the war-loaded history of cancer and its treatments, and cancer objects like prostheses, wigs, and make-up. Malignant forces the reader to acknowledge the paradoxical, ugly, and inevitable reality of cancer today.

I am a teaching assistant on the Introduction to Social Medicine course at the Department of Global Health and Social Medicine at King’s College London, which is taught by Carlo Caduff. The course is offered as part of an interdisciplinary BA/BSc programme in Global Health and Social Medicine that combines social science and biomedical science courses. Many of the students have a background in the natural sciences, and some are study abroad students taking the course as part of their pre-medical degree. We read Malignant to introduce students to why and how the ‘subjective’ is a powerful and necessary voice in medicine, to show that illness and disease need to be understood as more than medical matters, and how studying illnesses can serve as a lens and a way to study the state and its apparatuses.

I talked with Jain about what it was like to teach Malignant as part of an undergraduate course, and about the implications of her arguments about the inevitability of cancer within our current political and economic landscape.

 

The ‘Underbelly of American Culture’

TM: In the seminar discussion session following the class lecture, one of the students, said: ‘I think it’s unfair to single out America’. On the one hand, what is significant about this study is that it is about America – a country with a mostly privatized (and expensive) healthcare system, and a highly profitable healthcare industry that includes medical research, medical training, pharmaceutical development, and health insurance, amongst others. We discussed in class how a study of cancer in the UK would perhaps have been very different, which was a great entry point to understanding how local context affects how illnesses are dealt with and treated. The aim of your book, and you describe it this way on your webpage, is to “better understand life through cancer”. So it’s not just about cancer, it’s about what studying cancer can tell you about life in the contemporary US.

LJ: Yes – and I think that is very much a strength of anthropology and other areas of social theory that begin from a nearly microscopic reading and work out from there. In the case of Malignant, the kinds of microscopic data I took extremely seriously in my “reading out,” as it were, ranged from the strange feeling of reading cancer trial results and trying to fit oneself into them, to looking at an overlooked, or taken for granted term, such as “loss of change,” in a legal trial. I reversed the usual way of looking at things. Rather than thinking (in the first example) about how the trial arranges and accounts for the individuals in it, I started from an individual response to a stack of trial reports to figure out what that had to say about the structure of randomized control trials and the culture that rendered these structures so utterly transparent. In a way it is an intuitive method, but in many cases it led to unexpected findings.

In terms of the goals and research questions of Malignant, yes, I could have looked at any other country because in one sense my question was: how can you see the nation’s values through the way it understands illness and health? But because I did focus on the US, and a little bit on Canada, I was able to look at some very specific struggles we have there, such as the fact that illness is, as much as anything, a means of structuring capital accumulation and dispersal. This is especially true for cancer in considering the role of industry in causing it, and then the massive profits made in treating it – and of course, losses in being treated. My goal in the book was not to pick on America by noting this fact, but rather to suggest that by analyzing many of the structures that try to address, redress, and obscure cancer, we would be able to develop richer languages with which to understand it as a cultural phenomenon that is central to so many aspects of American life.

I’m American too. I want a better system. I think we deserve better treatments and a more accurate vocabulary to understand the contradictions inherent to cancer.

TM: In the lecture you gave at KCL, in the discussion afterwards, you said that cancer is ‘the underbelly of American culture’. Maybe you could talk a little about what you mean by that?

LJ: When I say it’s the underbelly of American culture, in part I mean to indicate that Americans have been able to do so much. We’ve been able to cure, you know, malaria and polio, and an incredible range of diseases. We have been able to feed everybody, at least create enough food to feed everyone, if not feed everyone. We have the best weapons you could imagine. We have this scientific and industrial success after success, right?

And then there’s this thing we just can’t get rid of. Not only we can’t get rid of it, but we can’t really understand it. We can’t grasp it well enough to even have the conversation. Yeah, we’re creating lots of food, but we’re doing it using these awful chemicals that we haven’t mostly tested but when we do, it looks like a lot of farm workers are dying from these diseases, a lot of people who live in agricultural or nuclear regions are dying of these diseases. Cancer rates are not going down anywhere near what we would expect by early detection. And nobody wants to link that to the increasingly profitable, increasingly brutal, increasingly expensive projects of cancer treatment where doctors are making reputations, they’re making tons of money, manufacturers are making tons of money. If you want to invest in anything in the US, you invest in healthcare because that’s where the returns are going to be. But noting that is not to make the story of cancer a simple one, for it is anything but.

One of the strategies, then, in the book is to understand cancer as a fluid, tentacular term that is shored up in different ways by different people with scattered and often conflicting interests. Because we don’t have a good way of understanding how this term travels as if it were mutually comprehensible in medical, legal, regulatory and other infrastructures, we tend to think of it as a thing that everybody understands. And as I wrote:

“Not only does it work through the metaphors of metastasis, recurrence, and remission, but it is also at one moment a paper trail and at another an identity, at one place a statistic and at another a bankruptcy; here a scientific quandary, there, a transcendent image of a cell. One person’s losses offer another a chance to leave a mark on humanity. A body image taken offers another to be found. The project of making cancer – as plural as it is singular, as vast as it is microscopic, as diffuse and discrepant as it is descriptive – resonates under one word. The simple noun cancer consolidates this collective achievement.” (14)

Throughout the book I deconstruct the consequences closing off, rather than opening, cancers meanings.

 

Defining and locating cancer

TM: Something I also found really helpful in your book is your method. Throughout the book you keep showing how cancer escapes any attempts to bound it, or to be bound as an object of study. Even if you wanted the book to be about cancer it couldn’t be.

LJ: Right, that’s exactly right. I don’t want the book to be pigeon-holed as a book about cancer, because for me cancer is simply a window onto a cultural reading of the political-economy of the US.

TM: So if you can’t locate cancer, if you can’t turn it into an object, then what does a study of cancer become?

LJ: My hope is that there is a lot of material in my book that will resonate differently for different readers, and one of the most rewarding comments I get is from folks who have read the book and found it useful to think with cancer in their own lives.

By rethinking cancer as a word that was not a noun, but as a phenomenon that was a practice and constantly in motion, I wanted to bring to the fore the fundamental mystery, uncertainty, and ignorance about it and argue that we need to recognize and reckon with that, rather than pretending we know what we don’t. Too often our numbers – trial results, prognosis, statistics – pose as accurate knowledge. To think of it as such is to miss the boat on nearly everything, and each of my chapters is dedicated to illustrating how that is so. In a weird way those numbers lead us to think there is clarity at exactly the moments there is least clarity: selecting a treatment plan, deciding whether to join a trial, voting on whether to allow a carcinogen to be used in food packaging.

For me this project has been a multi-decade project in the sense that I was trained by Donna Haraway at the History of Consciousness Department at the University of California, Santa Cruz. Professor Haraway was attentive to teaching us how to think and write about objects that circulate in complex and octopal ways in different contexts. She taught us a facility with theory and how to read different kinds of documents for how they were defining their terms, as it were. An EPA document is going to think about cancer differently than a medical complaint, right? So then, you can take cancer – the one thing we assumed we agreed on — in each of those documents and think about what does he mean by cancer and what does she mean by cancer. When one opens that term, that black box, of cancer, things really start to both fall apart, but also come together.

One of the chapters where I had to do this really carefully is that chapter on egg donor-ship and IVF where not only didn’t we know what cancers might be caused, but there was no data on- or the kinds of data that we had were so different than any scientific study, right? And because we didn’t have those kinds of specific data, it was very easy for IVF clinics to continue to say ‘well there’s no link, there’s no proven link’. But that doesn’t mean there’s nothing there. So what I had to do was collect what we had and make it into an argument that made sense in the context of not only cancer being open-ended, but the ways we were studying it being not the full, nothing full there. So what do we do with that lack of fullness? Do we just give up? And I was arguing, well, no. We can do this other thing. We can look at how the answer is produced. We can look at why it is OK that these women aren’t being tracked? And it’s OK for these other cultural reasons that may seem completely unrelated, like the history of the American family, but they’re not. They’re absolutely central I think. So I don’t know if that answers the question but those are a few of my strategies of how to do it.

 

Complicity and Blame

TM: In David Napier’s review of your book, he says: “if a direct cause cannot be identified, no one needs to be accountable”. This reminds me of what a student said in our class, “if everyone is complicit, then no one is to blame”. With him, and with other students taking the course, complicity is perhaps the most difficult thing to come to terms with – in relation to this and other texts. There is a deep discomfort with the idea that there is no one actor to blame, one cause of something.

LJ: Complicity, of course, has levels to it. People are complicit in different ways, and this also relates to the sort of everywhere and nowhereness of cancer. Take for example a warning sign that lets you know that you could, in theory avoid certain cancer causing elements. In some cases, one may have some choice about how much exposure one will take on, such as, arguably, cigarettes. In other cases, the sign might appear in places that you might not have any choice about, say, asbestos in a school or home, or for folks who grew up along the nuclear testing fallout routes. Even cancer treatments risk causing other cancers.

That’s exactly why cancer is the underbelly of contemporary American life: there’s no easy cure, there’s no easy solution, there’s no easy identification of what causes it. It’s a side-effect and consequence of our political-economic way of life. So in that sense, your student is absolutely right – there is no one to blame. But then there’s the complicity of those of us who just want to put a certain thing on our hair that happens to have carcinogens that we may or may not be aware of, and then how might we compare that to the chemical company who knowingly uses those carcinogenic ingredients and lobbies to keep them as proprietary knowledge, and the regulatory agents who agree to do that? Personally, I think that chemical company should be forced both to disclose and to use alternative ingredients.

But what I take the student to be saying is that, if we’re all complicit in some way, and there is no one to blame, then what do we do, how do we force or provoke any kind of change? And that is right – that is precisely the issue, there are no simple answers, no one to sue, which is why I am aiming to come up with an analysis that isn’t just in terms of complicity and blame and choice. But I’m still interested in this kind of promise; I understand “cure” to offer a similar sort of ethereal promise. The promises of cure have been given for over a century, while the few cures that have actually materialized have served to structure cancer and cancer research in a regime of futurity that also shaped many other dimensions of how we understand it.

So in some sense, what the student is saying is exactly the kind of frustration that I’m trying to explain in this book. How did we end up at this point when we have celebratory cancer marches rather that the sorts of angry actions that pervaded AIDS activism?

TM: What does this say about the US and this ‘culture’ of blame? And how is this related to your previous book on injury?

LJ: It is really interesting that Americans have this reputation of suing each other both at home and abroad. I actually don’t think it’s true that Americans over-litigate (I’m talking here about physical injuries, not about other areas, which I haven’t studied in detail), and I wrote about this in my first book, Injury. My first book traced the origins of this idea about a culture of blame, which as far as I can tell, came from a litigation system that grew up around people suing big companies when they’d been injured. I don’t know how much you want to get into this but I’ll just give you a very brief outline of my conclusions. First of all, because there’s virtually no product regulation in this country, even for medical products, stuff gets on the market here that is so incredibly dangerous, and people do injure themselves. Then you have a system where there’s virtually no medical care for many people. Anybody injured would have a very hard time – they wouldn’t be able to work for 6 months, they may lose their job, they may not have anything to fall back on, and if they didn’t have health insurance, they would really be in trouble. Even with health insurance, the expenses such as co-pays can be astronomical.

This leaves litigation as a sort of last ditch way they could help themselves and their families. Third, actually suing these companies is extremely difficult. Only 2% of people who are seriously injured in a way that could legitimately lead to a lawsuit ever sue – 2%. And of that 2%, fewer than 50% actually win because judges in this country are elected; and even then, in many states there are caps on the awards you get, making it very difficult to even find a lawyer who will take on a case. So the actual reality does not bare out the myth that there is a culture of blame in this country; this myth is the result of tort reform movements and the insurance industry.

Nikolas Rose introduced me at King’s, he said something about a case that he discussed with me about a woman who burned herself with hot coffee. That case was taken up everywhere – by comedians, in advertising. She became the absolute joke of this country. It was tragic because you can really easily make a very tight little argument like, ‘she had a cup of coffee, she tipped it over while she was driving, she burned herself and now she’s suing and that’s ridiculous’. That took me 30 seconds to say that. The other side takes a good 2 and a half minutes to say, which is that she was an old woman, she wasn’t driving, she had pulled over to have a sip of coffee. McDonalds coffee had had hundreds of complaints about burns before because they keep their coffee at 2 or 3 times the heat of normal coffee so it’s scalding hot. She spilled a little bit on her groin and went to the hospital. She ended up with 3rd and 4th degree burns. She couldn’t walk for weeks. So yes, she sued McDonalds, but it wasn’t anything like the way that it was displayed in the news.

So when Americans and others talk about a US culture of blame, what they mean is a culture that has had its terms taken over by insurers and people who make a lot of money ensuring that there’s no product regulation in this country so people who are injured are absolutely powerless. One way to make them even more powerless is to blame them for their injuries and blame them for anything they can try and do about it.

The first book and the second book are similar in terms of the basic question of how one gages a psyche, a national psyche, through sites of injury and disease.

 

Contingency and Inevitability

TM: At the KCL lecture someone asked you if you have an ideal world in your mind for cancer treatment, and how far away we are from it. You said ‘ideally cancer doesn’t exist’ but you didn’t think that world was possible. I want to talk about the implication of your argument – that cancer is inevitable within the kind of context that you describe. I read this insistence on the inevitability of cancer as a critique of anthropology’s insistence on contingency – that things could be other than they are. Because it’s that exact same realization (the counter-factual as you put it), that ‘things could have been different if’ that makes the experience of cancer so painful.

LJ: Yes, that’s a really great point. This counterfactual paradox, set up by prognosis, for example, as well as several other painful but logical aspects surrounding our understandings of cancer does raise this more global question of both contingency and inevitability that has haunted a lot of the intellectual questions I’m drawn to.

I don’t have a ready answer to whether I intentionally wrote the conclusion as a critique of anthropology, or even whether I have much of a stake in defining the discipline as such. Some of my colleagues at Stanford and elsewhere seem to be obsessed with defining it and then excluding people from it on the basis of their research questions and geographic areas. But as somebody trained in History of Consciousness and interdisciplinary humanities and social sciences, my interest is less in anthropology as a discipline and more in how to use these incredible methods we have of incisive reading and analytic approaches to try to figure out how to understand the agonizing predicaments within which people live. I believe we have a certain responsibility to do that, and to do it as accessibly as possible.

TM: When we describe something as being everywhere, distributed, which is I think what anthropology tends to do a lot of the time, then there’s also a tendency to say things could be different and there is hope in that.

LJ: Oh, you mean and I’m saying that they couldn’t?

TM: Yeah.

LJ: Yes, yes, you are right, and in fact I struggled a lot with this in the writing. I suppose that ultimately I believe that in actuality, they couldn’t be different. Where we can (and I mean we as academics) ameliorate the situation, in some way, maybe, is by having a richer vocabulary to understand and describe those paradoxes that otherwise can eat away at you. Some of the paradoxes I discuss in the book are ones that confronted the people struggling to understand their experiences in the many cancer retreats I attended. It was absolutely heart-breaking and even disgusting to see how people were left to make sense of this confusion when they are at their most vulnerable.

Americans expect ill and old people to bear the brunt of a lot of things that simply don’t make sense. The most obvious example of this is the drive for cancer patients to become “survivors”: to choose the best treatments (as if there were many options) or the best hospital (as if insurance didn’t limit where you can go, or as if it makes much of a difference), to paste a pink ribbon on your forehead and have a cheery attitude. It’s ridiculous and witnessing the depth of the torture and anguish suffered by people trying to make sense of it (over and above the usual nonsense of working out which treatments to get and battling health insurance) was what started and kept me writing. The injustice is nearly unbearable and it’s virtually invisible.

That’s exactly why this book is not your classic activist book. I see an activist book as saying ‘here’s the thing, this is messed up, we need to do it differently and here’s how we could: we could regulate chemicals, we pour money into treatment, we could do this and that’. And I’m thinking, well no, we can’t. If you look at the logic of the regulation or the legal system, if you look at he reasons for the dearth of research in certain areas, and so on, you start to see that the question is hugely intractable. We can’t just turn that all around. If we could, it would have happened decades ago, it would have happened with the ‘war on cancer’. It’s not like we don’t know that 80,000 chemicals are poured into our environment need to be tested, of course we know that, but we don’t do it. Why not? And not only why not, but what does that leave us with – politically, emotionally, medically. It’s this last aspect that I was most interested in seeing more clearly. So you’re right, it is very much a critique of that style of liberal, what I consider a liberal, anthropology.

 

A Conclusion

The hope that things could be other than they are is part of what makes a cancer experience painful. In Chapter 1, Living in prognosis, Lochlann Jain shows how patients she met throughout her treatment considered the other futures they could have had ‘if’ they had been diagnosed earlier (and all the other ‘ifs’). “The past tends to be a preoccupation of patients and of lawyers who wonder how and when things could have gone differently” (p. 88). Malignant instead shows how cancer is made inevitable in the US and calls for “an elegiac politics – a stance that admits to the inevitability of these debates given the environmental and economic landscape.” By acknowledging the inevitability of cancer and pointing out the problematic emotional engagement that comes with thinking about the counterfactual and pasts that could have been, Malignant also serves as a critique of activist arguments that insist on alternative, hopeful futures. Malignant is a different kind of activist book in the sense that it forces an acknowledgement of harsh realities and the political and economic landscapes that allow something like cancer to become inevitable.

Many of our students say that they have learned a different way of thinking on the Introduction to Social Medicine course – and it is because of readings like Jain’s Malignant. This different way of thinking is recognition that eliminating cancer will take much more than another drug in development, a better definition of what cancer is, or another fundraiser. Students begin to understand that it will take overhauling entire economic and political systems, revising many of the assumptions underlying biomedicine, changing so many aspects of the ways we choose (or don’t choose) to live our lives, and much more. Reading Malignant demonstrates how and why illnesses continue to exist – not despite, but precisely because of the massive investments made to eliminate them.

 

Tara Mahfoud is a Research Associate and final year PhD candidate at the Department of Global Health and Social Medicine, King’s College London. Her dissertation is an ethnography of brain modelling and simulation in the European Union’s Human Brain Project.

 

Web Roundup: Marching for Science, which is what, exactly? by Lily Shapiro

30 Avril 2017 - 8:42am

Many of you may have marched (or chosen not to march) at last week’s March for Science. I marched with my partner and young son here in Coimbatore, India.

It’s fair to say that confusion, controversy, and disagreement plagued the Science March from early on, for two important reasons: The first, from a group of scientists who believe the politicizing science (as if it is not already always political) will dilute its power (its “objectivity”). On the blog addgene, one scientist, Stephanie Hays, explains why, amidst some controversy, she intended to march. While many anthropologists I know would take issue with her first sentence, “Science is an apolitical process for seeking knowledge,” she goes on to detail why some are wary of the politicization of science but defends the need to establish that words like fact and truth mean something in the current political climate. Her post also contains a good reference list of other articles and posts on the march for science at the bottom.

An op-ed by Robert S. Young in The New York Times “A Scientists’ March on Washington is a Bad Idea,” makes a similar argument. While Vox points out that “Science is already political. So scientists might as well march.”

The second (and, to my view, more interesting) set of controversies around the march have to do with pushback especially from scientists of color and allies who wanted to centralize concerns about the lack of diversity in science and STEM fields. Sociologist Zuleyka Zevallos has a long blog post on the various and contradictory statements from Science March leadership on diversity and inclusion. Her Twitter feed also has discussions on the status of diversity and inclusion in science in general and the organization of the science march more particularly. Jacquelyn Gill was an organizer who, dissatisfied with the leadership left the march and posted about her experience on Twitter. Many of these issues are covered in Inverse, “Why the March for Science is in Turmoil”. Caroline Weinberg, one of the organizers, responds to some of these controversies in an interview in The Chronicle of Higher Education.

Sean Carroll in The Atlantic writes that we are “Marching for the Right to be Wrong”, which is a take I find compelling. And yet given that various fields (see for example psychology, oncology, stem cell research) have gone through “reproducibility crises” in the past 10 years, in which it turns out that a large percentage of experiments published in elite journals turn out not to be reproducible, are we sure that science is really that good at proving itself wrong? Several initiatives have come out in response to this, including the Reproducibility Project. An offshoot of this project dealing specifically with cancer research has just released its first results, which are “confusing.”

Speaking of ways that supposedly objective results are biased, an article in The Guardian summarizes findings published in Science that complex machine learning tools (including neural networks) show gender and racial bias, or rather, that these tools learn this bias because of the ways in which it is already encoded in human language. For example, these “findings suggest that algorithms have acquired the same biases that lead people (in the UK and US, at least) to match pleasant words and white faces in implicit association tests.”

In thinking through how to respond to these and other ethical issues raised by computer science, Emma Pierson writes in Wired, “Hey Computer Scientists, Stop Hating on the Humanities,” in which she argues that the complex ethical questions raised by new technology and its capabilities are not answerable by a training that focuses only on technical skills. “There are few things scarier than a scientist who can give an academic talk on how to shoot a human being but can’t reason about whether you should be shooting them at all.”

Lastly and only tangentially related, The Atlantic has a nice long article, “Torching the Modern-Day Library of Alexandria” on Google’s Google Book Search project, their attempt to scan every book in existence and upload them to the net. The article details the story of the germination of this project, how it became embroiled in litigation over obvious copyright infringements, how a settlement was nearly reached but then scrapped in large part by the efforts of academics, librarians, researchers and other book aficionados who were in favor of the project in principle (the principle of increasing access to mostly out-of-print and difficult to access books), but objected to Google being the sole holder of the keys. I understand their objection, but, like the author, think it’s a shame that, as he writes, “People have been trying to build a library like this for ages—to do so, they’ve said, would be to erect one of the great humanitarian artifacts of all time—and here we’ve done the work to make it real and we were about to give it to the world and now, instead, it’s 50 or 60 petabytes on disk, and the only people who can see it are half a dozen engineers on the project who happen to have access because they’re the ones responsible for locking it up.”

 

 

Other snippets from the web that you shouldn’t miss this month:

The Heart of Whiteness: Ijeoma Oluo Interviews Rachel Dolezal, the White Woman Who Identifies as Black in The Stranger

An article in The New York Times shows that subsidizing early childcare, especially for poor families, has enormous impacts on the income of mothers and the success of their children (and their children’s children)—this effect is particularly evident in sons.

The United States of Work” in New Republic reviews two recent books on wage labor in America.

Subjectivity After the Subject by Sadeq Rahimi

27 Avril 2017 - 5:05pm

One: Whither The Subject?

It has been exactly 8 years since I wrote the introductory installment of a mini-series on political subjectivity for Somatosphere. When I wrote on political subjectivity at the time, aside from exploring and communicating ideas, a good part of my agenda was to help propagate the concept of political subjectivity in cultural and medical anthropology –the notion that politicality is not something that some people do, but something that is intertwined with meaning and meaning making, and hence defines the very experience of subjectivity that makes us human beings.  As I write this here to initiate what I am hoping to become a follow up set of posts on subjectivity and its future, ‘political subjectivity’ is no longer a new construct nor in need of propagation.  There are numerous books and articles on the topic, and the discussion has moved forward to create intriguing inquiries such as hauntology, and the relationship between intergenerational transmission of affective patterns and political subjectivity.

For me, this has been a satisfying development to see, despite an acute awareness of the fact that this progression is by no means simply a fruit and consequence of intellectual desire and efforts of individuals like myself, but in some eerie sense, the inevitable outcome of much larger historical, technological and geopolitical movements.  Satisfaction aside, in other words, these years have given me the fascinating opportunity of witnessing the incredible ways in which these broad global patterns of movement have given rise to specific intellectual trends, and have pushed specific philosophical, anthropological and psychological questions to the forefront.

I am aware that what I have just described amounts in many respects to nothing more than an ordinary account of change, insofar as history of ideas is concerned.  But, in addition to the fact that the velocity of change in our day has made for much more fascinating and tangible observations of such developments, the point I want to pull out of this account is the significant implications of both this unavoidable velocity of change and, as a result of it, the explicit fashion in which we see sociocultural events and phenomena, discipline-wide intellectual trends and theories, and all the way down to individual experiences, desires and urgencies, are practically immediately forged by global-level trends and processes that often seem to have no direct or apparent ties to these registers of experience.

In other words, not simply the fact of the speeding change, but also the clarity of the type of impact these changes are exerting on our very human-ness has brought us to a point that requires us to start making sense of these processes from a diachronic, or in fact a pantemporal point of view.  I have written on this topic of pantemporality elsewhere, and I may have to come back to it in more detail at a later point here as well.  But for now, what I mean is the fact that human temporality (or ‘historical time,’ as Hegel termed it), and hence the genealogy of ideas, does not work in the basic linear fashion we tend to think it does, it seems to have an underlying logical structure that moves in a circular fashion (starts from future, goes on to past, and ends in present, and moves on to future and so on), and at the same time it is also structurally disjointed, making for experience that is present to various temporalities at any given moment.  Bringing this observation to the question of transformations in human subjectivity would in some sense amount to asking the question of whether there is a broader, more comprehensive framework in which we could understand and conceptualize “subjectivity” –a framework that immediately and inevitably transcends the substantialist understanding of human subject en-soi, and the anthropocentric sense in which we have always perceived it.  The alternative framework desists from locating a subject at the center of subjectivity, and opens the doors to models of understanding human experience and human subjectivity that may offer us the option of conceptualizing human subjectivity liberated from the human subject.

I have said a number of things here that may require more elaboration, and I am committed to coming back to do so in near future.  The reason I have brought these up was in fact to set this post up as an introduction to what I am hoping will become another mini-series, dedicated to examining the future of the human subject, from a theoretical point of view and in the context of real-life observations such as the accelerating trends of change.  The discussion will move through various lines of thought, but central to it all will be the question of where subjectivity (not the debate, but the experience itself) is heading, and what, if anything, we might need to do in order to make sense of this moving (and disappearing) target.  In some sense then, the real question might be whether it is reasonable to expect the human subject as we understand it to transcend the fast and vast transition that is taking place. And what would this all mean in terms of the ‘nature’ of the human subject.

I look forward to working through these intriguing themes, and will be very grateful for receiving your positive and critical input from both intellectual and experiential points of view.

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.

Pages