A well-known quote from Hamlet is “Something is rotten in the state of Denmark.” This, of course, refers to the illegitimate and immoral reign of the fictional King Claudius, Hamlet’s uncle. So, while there is plenty of current relevance related to the political and social turmoil hinted at by this line, instead let’s talk about another aspect that I find particularly fascinating — the connection of scent and odor to ideas of morality, good, and evil.
In an odd turn of events, I recently found myself trying to explain to some chemistry students why a quote saying that someone “smells of sulfur” means that they are diabolical, hellish, or somehow antichrist-like. Why sulfur? No, there is really no connection to sulfur’s having an identical number of valence electrons to oxygen, though that would make an interesting story. Some explanation of the history of sulphurous scent as diabolical can be found here: The Smell of Hell: Does Satan Smell of Rotten Eggs? Connections between scent and good and evil actually abound. Fragrantica has a number of excellent articles about the historical and cultural meanings of scent, including Elena Vosnaki’s A Diabolical Whiff: Scents of Hell:
It was sorcerers during the Middle Ages who, suspected to be in cahoots with the devil, were considered to be sulphurous smelling themselves. Given that these were often “wise women” dealing in pharmacopoeia, of which sulphurous materials did make a part, wouldn’t it be evident that handling them would lend them that odor? Try to prove it to the ecclesiastical courts!
And the counterpart, A Saintly Aroma: Scents of Heaven:
In Biblical times, the link between germs and diseases hadn’t been made (it had to wait till the 19th century), so the logical leap that foul smells, entering the body at once with one’s breath, could carry disease isn’t far fetched… Using incense materials, resins and gums high in purifying molecules such as Verbenone (a ketone) or Trans-verbenol (an alcohol), which they collected spending much time and effort, they fought foul odors with pleasant, “clean” ones… Since these aromatic resins burn without residue, symbolizing the heavenly spirits to whom they ascend to when burnt, and since essential oils represent the very spirit of a plant, could they not be the answer to a prayer against the inavoidability of corruption?
These associations of scent and danger have not disappeared with the advent of germ theory. An antiseptic scent has many associations of its own. Perceptions of morality are also marked by purity of scent, and immorality by malodor. As attributions of moral behavior are deeply cultural, it also makes sense that “When two people smell the same thing, they can have remarkably different reactions, depending on their cultural background” (Sniffing Out Cultural Differences). There are also theories that our senses of disgust, perhaps forged in the evolutionary times of high microbial pathogenesis, have now become embedded as an internalized form of social control: “Our ancestors reacted to parasites with overwhelming revulsion, wiring the brain for morals, manners, politics and laws” (Disgust made us human). So, it may be that humanity is a creature of disgust, and that our social institutions are vestiges of our co-evolution with microbial parasites. (I can’t help but wonder, if the web had an odor, what would it be?)
Additional miscellanea of potential interest:
- Scent related:
- Meet the Woman Who Is Preserving the Smell of History (Atlas Obscura)
- Scientists search for death’s aroma and Zombie Apocalypse Survival Chemistry: Death Cologne. (Both from the American Chemical Society.)
- An interesting piece on the meanings of evidence, expertise, and flossing one’s teeth: Flossing and the Art of Scientific Investigation
- Is Physical Law an Alien Intelligence? Because, why wouldn’t it be?
- “The ancient Japanese art of flower arranging was the inspiration for a groundbreaking technique to create tiny “artificial brains” that could be used to develop personalized cancer treatments.”
- And, for a few additional thoughts about science, medicine, and magic in all their intertwined and uncleanly complexity: Found in the Eyes of Rams: The Bezoar and its Powers. “A bezoar is a mass of undigested or inedible material found in the GI tract…Whatever the origins of the belief in curing poison, bezoars were popular in the Middle Ages and into the 17th century as antidotes. They were carried as charms, included as decor or attached to drinking and eating vessels to protect the diner, and tests were even designed to detect fakes –the selling of which was a punishable offense.”
by David S. Jones
The Johns Hopkins University Press, 2013, 336 pages.
My first encounter with David S. Jones’ Broken Hearts was in April of 2016. I had packed it in my carry-on luggage as on-plane entertainment while traveling to Minneapolis, MN for the eighty-ninth annual meeting of the American Association for the History of Medicine (AAHM). How fitting, I thought, to read about the history of heart disease in the “cradle of cardiac care,” a city that transformed America’s medical enterprise by developing many innovative inventions and techniques in the field of cardiology.
And fitting it was. The conference was teeming with allusions to the University of Minnesota’s cardiac legacy. Not only was there an exhibition on the history of cardiac disease epidemiology developed by the university’s School of Public Health, but there was also a guided tour of the Visible Heart Project, a research laboratory dedicated to reanimating mammalian hearts to gain insight into the organ’s physiology. The overarching theme of both the exhibit and tour was one of progress, as both of these special presentations emphasized how far we have come in terms of gathering accurate information about the human heart. Whereas the exhibit referenced the “exponential growth” that the field of cardiac epidemiology has made in terms of understanding the risk and protective factors associated with heart disease, members of the Visible Heart Laboratory claimed that their research had provided unprecedented insight into the functional anatomy of the beating heart. Over half a century after University of Minnesota surgeon Dr. C. Walton Lillehei preformed the first open heart surgery, and, with the help of Earl Bakken, developed the first battery-powered wearable pacemaker, I left Minneapolis thinking that the city continued to be at the forefront of cardiac care. Within the walls of the University of Minnesota, researchers were still developing innovative inventions and techniques that were transforming medical practice and saving lives.
The idea that unprecedented progress in cardiology has been made over the course of the last sixty years is not unique to researchers at the University of Minnesota. Many medical professionals believe that we now know more about the human heart than ever before, and that research conducted over the past sixty years has given us a deeper understanding of cardiac diseases and their causes. However, this black-and-white picture of medical progress is not as straightforward as these AAHM special presentations would have us believe. In spite of the mantra that health science researchers are “conquering cardiovascular disease,” physicians still face many challenges in developing theoretical frameworks for heart attacks, and producing definitive knowledge about the safety and efficacy of cardiac treatments.
One of the first scholars to draw attention to some of these challenges is David S. Jones. His new work, Broken Hearts: The Tangled History of Cardiac Care, unpacks the complex history of how medical professionals have understood ischemic heart disease over time. By examining how American cardiologists have interpreted and responded to heart disease during the mid-late twentieth century (and beyond), Jones reveals the ambiguities and inconsistencies that persist at the core of cardiac surgery, and traces how these uncertainties underpin the development and evaluation of modern medical interventions. Using the history of heart disease as a lens through which to examine the challenges associated with making health choices, Jones presents a fascinating analysis of how the complexities associated with medical decision making influence the way that cardiac care is administered in the twenty-first century.
In order to explore this tangled history of medical knowledge production, Jones divides his book into three sections. In his first section, Jones examines how heart disease has been conceptualized by medical professionals from the early twentieth century to the present day. He starts the section off with the brief and simple statement: “while the heart, at a basic level, is one of the easiest organs to describe, it has been one of the hardest to understand, especially when it comes to coronary artery disease.” The omnipresence of ischemic heart disease, and physicians’ willingness to perform medical interventions like coronary angioplasty, bypass surgery, or prescribe pharmaceuticals like statins and platelet inhibitors (even on a preventative level) suggests the medical establishment’s unwavering confidence in how cardiac care should be administered. However, Jones points out that there has been ambiguity about heart diseases’ underlying etiology since the early twentieth century, and that this uncertainty raises questions about the efficacy and safety of modern methods of treatment.
Providing archival evidence from thousands of medical journal articles, Broken Hearts reveals that, from 1910 onwards, medical professionals have debated the cause of heart attacks. Although most pathologists agreed that arteriosclerosis underpinned coronary thrombosis, many disagreed on the finer details of this process. Whereas some pathologists argued that thrombosis was the result of the rupture of an unstable plaque in the coronary artery (thus triggering a dangerous blood clot), others believed that myocardial infarctions stem from the progressive obstruction of the coronary arteries, which ultimately prevents blood from flowing through the vessel. Uncertainty over the diseases’ etiology has continued to circulate in medical communities up until the early twenty-first century. In fact, the inability of researchers to establish a stable evidence base for and reaching consensus on a particular theory of heart disease is one of the reasons why the ISCHEMIA trial was launched by the U.S. National Heart, Lung, and Blood Institute of the National Institutes of Health in 2011. By assessing whether revascularization reduces the risk of heart disease or death in patients with angina, this trial hopes to resolve whether the theory of progressive obstruction or unstable plaques underpins ischemic heart disease “once and for all”.
After tracing the history of debates surrounding the underlying causes of cardiac disease, Broken Hearts moves on to consider how this theoretical ambivalence on the underlying cause of coronary thrombosis has influenced how cardiac interventions have been developed and assessed. In the book’s second section, Jones looks at the historical development of coronary angioplasty, bypass surgery, statins and platelet inhibitors, and chronicles medical discussions over which one of these methods provides the best treatment for patients. By showing that the popularity and use of medical treatments is predicated on a multitude of factors besides disease etiology, including ideas about cost, convenience, and effectiveness Jones challenges the popular and professional belief that the benefits of cardiac intervention always outweigh its risks. By arguing that doctors devote more energy to proving that treatments work than they do ascertaining complications—thus producing an asymmetrical knowledge base more focused on efficacy than patient safety. This can be seen in the example of bypass surgery as, in their attempt to demonstrate the validity of this revascularization technique in the face of theoretical ambivalence, cardiac surgeons neglected the cerebral complications that often arose as a result of the procedure.
In his last section, Jones raises the issue of geographic and racial variations in medical practice by showing how cardiac care is not practiced in a uniform way across cities, states or populations.
Through looking at how factors like race and place influence how a doctor will identify and respond to cases of ischemic heart disease, Broken Hearts illustrates the often-equivocal nature of cardiac care and the messiness of medical decision making more general. Although Jones doesn’t offer any hard and fast solutions to these problems, he highlights the need to integrate patient and physician priorities, values and preferences into account when developing new models of medical decision making. He also emphasizes the importance of acknowledging the complex social dynamics that underpin “the diseases we suffer, the treatments we can access, the outcomes of those treatments, and our knowledge of those processes.”
All in all, Broken Hearts is a captivating study of the history of cardiology. By moving away from the longstanding tendency to frame the history of cardiology as a progress-narrative, this book makes a great addition to the emerging body of literature that adopts a critical stance towards cardiac care, including Anne Pollock’s Medicating Race , and Janet Shim’s Heart-Sick.  Although this book is definitely geared to an academic audience, because it unsettles contemporary ideas about the coherence of cardiac care, the soundness of medical treatments, and the logic underpinning medical decision-making, I think that Broken Hearts has important lessons for the lay reader as well. Especially for people who are currently undergoing treatment for coronary artery disease.
Jennifer Fraser is a fourth year PhD student studying the history of medicine at the University of Toronto. Her dissertation charts the history of Canadian cancer epidemiology, focusing specifically on how cancer control campaigns were advertised and applied to Indigenous communities during the mid-twentieth century.
“About.” Heart Attack Prevention: A History of Cardiac Disease Epidemiology, Department of Epidemiology; University of Minnesota. 1 May 2016. http://www.epi.umn.edu/cvdepi/about/
“About the Lab.” The Visible Heart Laboratory, Department of Surgery; University of Minnesota. 1 May 2016. http://www.vhlab.umn.edu/about.html
“Conquering Cardiovascular Disease.” National Heart, Lung and Blood Institute. 27 October 2016. https://www.nhlbi.nih.gov/news/spotlight/success/conquering-cardiovascular-disease
Pollock, Anne. Medicating Race: Heart Disease and Durable Preoccupations with Difference. Durham: Duke University Press, 2012.
Shim, Janet K. Heart-Sick: The Politics of Risk, Inequality an Heart Disease. New York: New York University Press, 2014.
Smith, Monica M. “Medical Alley: Tight-Knight Community of Tinkerers Keeps Hearts Ticking, Minnesota (1950s).” In Places of Invention, edited by Arthur P. Molella and Anna Karvellas, 86-110. Washington: Smithsonian Institution Scholarly Press, 2015.
 Monica M. Smith, “Medical Alley: Tight-Knight Community of Tinkerers Keeps Hearts Ticking, Minnesota (1950s),” in Places of Invention, eds. Arthur P. Molella and Anna Karvellas, 86-110 (Washington: Smithsonian Institution Scholarly Press, 2015), 86.
 “Conquering Cardiovascular Disease,” National Heart, Lung and Blood Institute, 27 October 2016. https://www.nhlbi.nih.gov/news/spotlight/success/conquering-cardiovascular-disease
 David S. Jones, Broken Hearts: The Tangled History of Cardiac Care (Baltimore: Johns Hopkins University Press, 2013), 3.
 Jones, Broken Hearts, 96
 Jones, Broken Hearts, 228.
 Anne Pollock, Medicating Race: Heart Disease and Durable Preoccupations with Difference (Durham: Duke University Press, 2012).
 Janet K. Shim, Heart-Sick: The Politics of Risk, Inequality an Heart Disease (New York: New York University Press, 2014).
Somatosphere invites readers to submit to “Aftermath,” a new series examining the consequences of recent nationalist political turns throughout the world, including the US election. We are particularly interested in pieces which reflect on how these events intersect with the thematic concerns of the site – health, medicine and science, broadly construed. We especially welcome pieces which draw on original empirical materials or which bring conceptual materials from anthropology, history, sociology, STS, public health, cultural psychiatry and related disciplines to bear on the current situation. In the interest of cultivating vital discussion and circulating ideas quickly in response to a rapidly changing political environment, we encourage submissions that may seem sketchy, drafty, or unpolished. Potential topics might include but are in no way limited to:
- Possible effects of the 2016 election on the Affordable Care Act
- Mental health and the aftermath of the election
- Health-related dimensions of the Brexit vote and the upswing in nationalist political movements throughout Europe
- The changing politics and science of:
- abortion and reproductive technologies
- climate science
- evidentiary practices surrounding racial and ethnic categories
- threats to disabilities policies
- Resources for teaching about the current political condition, particularly as it affects health, medicine and science
- Strategies for activist academics in the current political climate
Please send your suggestions for pieces, completed pieces, or inquiries to email@example.com
A quarter-century after it was written, Hervé Guibert’s Cytomegalovirus reads both as a vital document of a particular moment in the history of the HIV/AIDS epidemic and as a wonderfully spare account of the banal humiliations and little triumphs of hospitalization in the shadow of a then-terminal illness. Republished with a luminous Introduction by David Caron and a wide-ranging and erudite Afterword by Todd Meyers, this slim volume is by turns poignant, humorous, and startling. We are very pleased to bring you a set of commentaries on Cytomegalovirus.
Northwestern University, Feinberg School of Medicine
Download it on Scribd (pdf):
Hello trusty readers. Check out November’s haul for “In The Journals,” and be sure to check out the special issue of Science, Technology, and Human Values: Feminist Postcolonial Technosciences.
Patty A. Gray
The Moscow street demonstrations of 2011–12 were the largest public gatherings in Russia since the collapse of the Soviet Union. They were also the largest-ever gathering of Russians on social media. While using the Internet to follow such large-scale social movements remotely, researchers experience social media as a context in which anthropology happens. They may think about “being there” in new ways that shift their focus to their own processes of memory making and sense of bodily presence. Experiencing and remembering social media in the body challenges the distinctions we might otherwise make between virtual and physical encounters.
The translation of international biogenetic resource rights to a former apartheid homeland is fostering business partnerships between South African traditional leaders and multinational pharmaceutical companies. In the case of one contentious resource, these partnerships are entrenching, and in some instances expanding, apartheid-associated boundaries and configurations of power. The state and corporate task of producing communities amenable to biodiversity commercialization and conservation is entangled with segregationist laws and spatial planning. Rather than exclusion and the closure of ethnic boundaries, resource rights in this context foreground forced enrollment and the expansion of indigenous group-membership as modes of capitalist accumulation in an extractive economy.
Since the 1950s, views of Earth from above have been critiqued for provoking detachment from and decontextualization of human, terrestrial concerns. These critiques thus establish Earth’s enveloping atmosphere as the ultimate context for meaningful and grounded accounts of humanness, and outer space as a site for abstract, generalizable knowledge. But in outer space, the explanatory work done by “context” is put in question, because spacefaring humans must attend to basic and constantly shifting conditions for life that lie beyond “context” on Earth, including breathing. Attention to humans in real and speculative space environments reveals context as a naturalizing device that establishes universal nature/culture distinctions through recourse to grounding terrestrial ontologies.
This article engages with the animal bodies that haunt the transnational pet-cloning industry: the “used-up” surrogate-mother dogs said to be returned to dog-farms and slaughtered for human consumption in South Korea. I explore how “Western” criticisms that reduce the problem to Korea’s dog-eating culture and lack of bioethics—interlocking with nationalist and cultural relativist responses among Koreans—reiterate postcolonial relations within transnational bioethics, further pushing these animals into the shadows. I trace shame and disgust (as affective remainders of canine bodies) as a way to critically examine the bioethicalization of animal welfare as an operation of the biopolitical order of things among human and nonhuman bodies in the field of transnational biotechnology, in an effort to remind us of the canine others within us.
In this article, I examine the scenario-based exercise as a central technology within Israel’s preparedness apparatus. Drawing on my ethnographic research in NEMA and the Turning Point administration, I analyze how the scenario event works as a technology-based uncertainty, both in its conceptualization of the future and, especially, in its enactment. As Barak argued, the exercise narrative is a chosen event, one that does not replicate the past or attempt to predict the future. Though designed to challenge responders, the scenario represents not a worst-case event but a plausible one. Moreover, although the scenario is based on a preselected, well-designed event, I argue that once practiced, it is actualized as a multiplicity of subevents, or incidents, that the various participants sometimes enact with unexpected consequences. With this technology, the Israeli preparedness system is directed neither toward producing specific responses nor toward discovering the best solutions for an unknown future. Rather, the technology generates uncertainty through its execution, from which new problems are extracted.
Micah M. Trapp
In my work in the Buduburam Liberian refugee camp, located forty kilometers west of Accra, Ghana, I have sought to understand how refugees’ demand for food with what they consider to be good taste is configured in equations of who is deserving, or in need of, humanitarian aid. My questions have centered on how the politics of necessity shape food provision as humanitarian aid. Central to these inquiries are the critical opportunities afforded to refugee subjects by the aesthetics of taste—how cooking and taste reveal forms of refugee subjectivities that counter the humanitarian politics of necessity.
Candice Oster, Julie Henderson, Sharon Lawn, Richard Reed, Suzanne Dawson, Eimear Muir-Cochrane, and Jeffrey Fuller
Mental health care for older people is a significant and growing issue in Australia and internationally. This article describes how older people’s mental health is governed through policy discourse by examining Australian Commonwealth and South Australian State government policy documents, and commentaries from professional groups, advocacy groups and non-governmental organisations. Documents published between 2009 and 2014 were analysed using a governmentality approach, informed by Foucault. Discourses of ‘risk’, ‘ageing as decline/dependence’ and ‘healthy ageing’ were identified. Through these discourses, different neo-liberal governmental strategies are applied to ‘target’ groups according to varying risk judgements. Three policy approaches were identified where older people are (1) absent from policy, (2) governed as responsible, active citizens or (3) governed as passive recipients of health care. This fragmented policy response to older people’s mental health reflects fragmentation in the Australian policy environment. It constructs an ambiguous place for older people within neo-liberal governmental rationality, with significant effects on the health system, older people and their carers.
Marit Haldar, Eivind Engebretsen, and Dag Album
Although the sociology of medicine has developed a rich body of research on patients’ experiences and how they handle their illnesses, few analyses have examined doctors’ concepts of disease. Building on previous research findings that doctors consider some diseases to be more worthy than others, this article focuses on how these differences in disease prestige are articulated and made logical. We presented a focus group panel of doctors a table of 38 diseases rank-ordered by prestige according to the results of a previous quantitative study of doctors. We prompted a lively discussion among the doctors by asking them whether they were familiar with this rank order. In analysing how they managed the prestige knowledge presented to them, we focused on how they handled the value conflict between this informal rank order and the formal value of equality of treatment. Using positioning theory as a theoretical premise and a methodological tool, we found that the focus group participants created positions in their conversations that allowed them to present and discuss views on disease prestige that would be considered illegitimate if they were declared directly. However, they were able to do so without being forced to take a personal stand. Thus, we demonstrate how informal disease rankings can be produced and reproduced.
Olaug S Lian and Frances Rapport
In this article, we explore the role of ‘place’ in shaping people’s illness experiences through a data-led inductive case-study based on experiential data from people living with myalgic encephalomyelitis (ME) in Norway. Our main aim is to understand how they experience, interpret and attach meaning to various places in which they reside, and how they construct the course of a life influenced by chronic illness. The study is based on stories containing photographs and written texts, received from 10 women and men. In their stories, they describe those places where they experience their illness in the least and most taxing ways. Through a narrative and photographic analysis of their stories, we explore how they perceive the relationship between place and illness as experienced, managed and endured. Our analysis is based on a place-sensitive sociology, in which we approach place both as physicality and a symbolic construction. The participants describe how a wide range of places are intimately linked to their illness experiences, and they interpret these links by referring to both physical and symbolic factors. They describe their lives in terms of a need for equilibrium between activity and rest. Risk is a strong underlying theme: whatever they do, they risk losing something. Most of all, the participants describe how they are looking for places to escape to and from. Places to escape to are those places where privacy and peace can be found, which primarily revolve around being at home. Places to escape from are those places that make their energy ‘slowly ebb away’.
Simon M Dyson, Waqar IU Ahmad, and Karl Atkin
The moral turn within sociology suggests that we need to be attentive to values and have a rapprochement with philosophy. The study of illness narratives is one area of sociology that has consistently addressed itself to moral domains but has tended to focus on stories of living with genetic or chronic illness per se rather than liminal states such as genetic traits. This article takes the case of genetic carriers within racialized minority groups, namely, those with sickle cell or thalassaemia trait, and takes seriously the notion that their narratives are ethical practices. In line with the work of Paul Ricoeur, such storied practices are found to link embodiment, social relationships with significant others and wider socio-cultural and socio-political relations. At the same time, such practices are about embodying values. These narratives may be considered as practices that re-fuse what genetic counselling has de-fused, in order to make sense of a life in its entirety and to strive ethically and collectively towards preferred social realities.
Dalit Simchai and Yael Keshet
This article presents a critical analysis of New Age culture. We draw on two empirical studies conducted in Israel and show that the lofty notions about freedom from the shackles of socially structured identities and the unifying potential this holds, as well as the claim regarding the basic equality of human beings, are utopian. Blindness toward ethno-national identity reinforces identification with a self-evident hegemonic perception, thereby leading to the exclusion of peripheral groups such as indigenous populations. This exclusion is manifested in the discourse symbolically as well as in the praxis of complementary and alternative medicine, which is one of the main fields in which New Age culture is involved. Thus, the unifying ethos in the New Age culture becomes an illusionary paradise. This article contributes to the study of power relationships between New Age culture in diverse Western countries and the native and peripheral populations of these countries, and to the sociological study of complementary and alternative medicine incorporated into health organizations.
Alex Broom, Emma Kirby, Phillip Good, and Zarnie Lwin
The shift from life-prolonging and palliative care can be fraught with interpersonal complexities as patients face dilemmas around mortality and the dying process. Nurses can play a central role in managing these moments, often with a focus on promoting and enhancing communication around: the meaning of palliative care, the nature of futility and the dying process more broadly. These sites of nurse–patient communication can be highly charged and pose unique challenges to nurses including how to balance nursing perspectives versus those of other stakeholders including doctors. Here, drawing on interviews with nurses, we explore their accounts of communication about futility and the process of transitioning to palliative care. The interviews reveal nurses’ perspectives on the following: the art of conversing around futility and managing patient resistance, the influence of guilt and individual biographies in shaping communication, the importance of non-verbal and the informal in communication, the impact of conflicting organisational expectations on nurses and the process of learning to effectively communicate. We argue that these transitional moments articulate important, and at times problematic, aspects of contemporary nursing and nurse–medical relations.
Peiling Zhou, Sue C. Grady
- Hospitals are described per spaces, decorations, doctor-patient power relations and discourse between medical encounters.
- Spatial and temporal arrangements of these environments shape doctor-patient relationship to enhance or reduce conflicts.
- Adaptations to improve hospital therapeutic environments for patients and doctors are provided.
Andrea Krüsi, Ryan McNeil, David Moore & 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.
Philosophy, Ethics, and Humanities in Medicine (open access):
Sayani Mitra and Silke Schicktanz
During a commercial surrogacy arrangement, the event of embryo transfer can be seen as the formal starting point of the arrangement. However, it is common for surrogates to undergo a failed attempt at pregnancy conception or missed conception after an embryo transfer. This paper attempts to argue that such failed attempts can be understood as a loss. It aims to reconstruct the experiences of loss and grief of the surrogates and the intended parents as a consequence of their collective failure to conceive a surrogate pregnancy.
Shahaduz Zaman, Hamilton Inbadas, Alexander Whitelaw, David Clark
Around the world there is growing interest in the manner in which care is delivered to people at the end of life. However, there is little unanimity on what constitutes a ‘good death’ and the appropriate societal responses to the issue of delivering culturally relevant and sustainable forms of end of life care in different settings are not subjects of broad agreement. In this critical conceptual paper we focus on the emerging narratives of global palliative care and offer an assessment of their implications. We relate this to calls to improve end of life care across jurisdictions and settings, attempts to map and grade the development of palliative care provision, and to the emergence of a widely recognised global ‘quality of death index’. We consider an alternative approach to framing this debate, drawn from a subaltern and post-colonial studies perspective and suggest that adopting a truly global perspective will require acceptance of the plurality of past and present local problems and issues relating to end of life care, as well as the plural possibilities of how they might be overcome. In that context, we would not aim to universalise or privilege one particular global future for end of life care. Instead of homogenising end of life interventions, we seek to be open to multiple futures for the care of the dying.
Karen Lowton, Chris Hiley, Paul Higgs
Medical innovations have created a future of survivorship for many groups of people with a variety of conditions that were previously untreatable or untreated. This has led not only to an expansion of medical activity in a whole variety of new areas but also to the emergence of new groups of individuals defined or defining themselves through their experiences, diagnosis and treatment. Through analysis of in-depth interviews with 27 of the now-adult survivors of the pioneer cohort of children receiving liver transplants in Britain in the early 1980s and 1990s, this paper presents how this group not only illustrate the capacities of modern medicine and healthcare to transform the survival prospects of a more diversified population, but also create new narratives of embodied identity. Specifically, we examine how childhood identities were shaped in three settings; home, hospital and school. At home, parents appeared to shape their child’s identity through controlling tightly a daily medical regime focused on the concept of ‘body as machine’, celebrating their survival as a transplant recipient, yet at the same time socialising their child as a ‘normal’ child, albeit one who had a serious illness. The hospital appeared instrumental in shaping parents’ focus on their child’s body, and offered a way, through other patients with liver disease, for children to feel ‘normal’ in their difference. It was in school, through interaction with ‘healthy’ children and teachers, that corporeality and embodiment appeared most salient, and where social identity was negotiated and more often held in contention. Adult survivors of childhood liver transplant straddle the different discourses of normality and difference as their embodied experiences shape their narratives of identity and shed light on an underexplored aspect of the relationship between medicine and society.
Melody E. Morton Ninomiya, Nathaniel J. Pollock
Historically, Indigenous health research in Canada has failed to engage Indigenous peoples and communities as primary stakeholders of research evidence. Increasingly, research ethics and methodologies are being positioned as tools for Indigenous self-determination. In response, mainstream institutions have developed new ethical principles for research involving Indigenous people. While these transformations are necessary steps towards re-orienting research practices, they are not prescriptive. In this paper, we make visible three dilemmas from a case study in which Indigenous health research frameworks provided limited guidance or were unclear about how to balance community priorities with Indigenous research principles. We also discuss the strategies used to resolve each of these dilemmas.
We draw examples from a project that examined the lived experiences of children and youth living with FASD and their caregivers. This project was conducted in collaboration with Sheshatshiu Innu First Nation, an Indigenous community in Labrador, Canada. In doing so, we argue that knowing the key guiding principles in Indigenous health research is not always enough, and that the ‘real-world’ context of practices and relationships can lead to conflicts that are not easily resolved with adherence to these principles.
Sarah M. Frank, T. Elizabeth Durden
The emerging epidemic of obesity and type II diabetes in Mexico has recently propelled the nation into the public health spotlight. In the state of Yucatán, the experience of diabetes is greatly impacted by two cultural constructions of disease. In this setting, elements of Yucatec Mayan health practices as well as the biomedical model affect the approach to type II diabetes. Both frameworks offer unique understandings of the etiology of diabetes and recommend different ways to manage the condition. Based on in-depth and semi-structured interviews with both community members and clinicians, the present study seeks to understand how diabetes is understood and treated in indigenous settings in rural Yucatán. We explore the context in which community members navigate between locally available healthcare options, choose one over the other, or incorporate strategies from both into their diabetes care regimens. The tension between indigenous community members and their biomedical healthcare providers, the changing food environment of this community, and the persistence of traditional gender constructions affect the management of type II diabetes and its associated symptoms.
Tom Douglass, Michael Calnan
Sociological research offers crucial understanding of the salience of trust for patients in mediating a plurality of healthcare activities and settings. Whilst insights generated surrounding the salience of trust for patients are important, other trusting relations within healthcare have largely been neglected. This paper focuses on the significance of trust for doctors, arguing that trust is salient for doctors in facilitating their professional role, in the management of complexity and uncertainty in contemporary medical practice, and is a key mechanism underpinning professional identity. As such, the paper develops a preliminary conceptual framework for researching trust by doctors built upon the idea of a ‘lattice’ of doctor trust relations in various entities and at various levels that may be interconnected. The lattice of doctor trust comprises four primary conceptualisations – trust in patients, self-trust, workplace trust and system trust. The paper explores the notions of doctors’ need to trust patients to provide accurate information and to commit to certain treatment pathways; the relationship between the self-trust of the doctor, clinical activity and trust in others; the need for doctors to trust their professional colleagues and the broader organisational setting to ensure the smooth running of services and integration of care; and notions surrounding the complexity of the broader systems of modern (bio)medicine and the role of trust by doctors to facilitate system functioning.
Jeremiah C. Morelock
Mental health treatment providers today are subject to insurance company regulation. Using grounded theory to analyze 33 interviews of treatment providers, I portray this regulation as a form of surveillance that operates through discourse, and ask how treatment providers communicate with and through this system. My findings reveal that mental health treatment providers are required to deliver information to insurers within a rationalized medical discourse that is supposed to represent treatment, but is inadequate for the task. I argue this bureaucratic system demands that providers communicate with insurers in a distorted way. These findings are theorized in dialogue with Habermas’ communication typology and his theory of lifeworld colonization. I argue that the case of managed mental health care presents an arena of communication and colonization which is best suited by building from the Habermasian framework. Colonization occurs, yet on within a specific channel of communication, despite pretensions of thoroughgoing colonization. Systematically generated communicative distortions occur, but often without necessarily involving self-deceptions or strategic private agendas. This paper contributes to Habermasian theory by suggesting it could be further elaborated upon to account in for forms of colonization and distorted communication that occur in varied social contexts.
Rik Peeters, Marc Schuilenburg
This article addresses the question: ‘In what ways have nudging and other behavioural techniques entered the realm of policymaking for public health and what does that mean for the way contemporary society is governed?’ In our genealogy of Dutch public health policy, we have identified four periods: ‘rational persuasion/individual responsibility’ (‘70s), ‘welfarist emancipation’ (‘80s), ‘neo-liberal regulation’ (‘90s), and ‘management of choice’ (now). We show how a different type of technique, which we call ‘mindpolitics’, has slowly complemented the biopolitics of public hygiene and health care. We argue that to think in terms of biopolitics today means to think of its relation to a world in which public health is managed through architecture of choice and the way individuals are nudged into making better decisions.
Cindy K. Malachowski, Katherine Boydell, Peter Sawchuk, and Bonnie Kirsh
This article employs institutional ethnography (IE) inclusive of its distinctive epistemological stance to elucidate the institutional organization of the everyday work experience of the employee living with self-reported depression. The study was conducted within a large industrial manufacturing plant in Ontario, Canada. We discuss three institutionally organized processes that play a dominant role in coordinating the experiences of employees with self-reported depression: (1) employees’ work of managing and negotiating episodes of depression, (2) managers’ administrative work of maintaining privacy and confidentiality, and (3) the administrative work of authorizing illness. We shed light on how confidential medicalized disability management programs render managers ill prepared and inadequately trained to provide mental health support to their employees. Our findings inform advocacy efforts and facilitate both organizational and policy change to enhance services and supports for employees.
Celeste Campos-Castillo, Daniel J. Bartholomay, Elisabeth F. Callahan, and Denise L. Anthony
Recent health policies encourage electronic messaging with providers to potentially improve health care. It is unclear whether the same potential exists for individuals with mental health symptoms. Whereas these individuals appear interested in such technologies, they may also be concerned about privacy and security risks. To clarify this ambiguity, we conceptualize electronic messaging as an impression management tool for individuals with depressive symptoms, who risk devaluation from others. Consequently, factors that increase the perceived risk of devaluation in face-to-face clinical encounters may increase the likelihood of electronically messaging providers. We empirically examined two factors: depressive symptom severity and trust in physician confidentiality, which is the expectation that one’s regular physician uses personal health information appropriately. We found that reporting severe depressive symptoms increased the likelihood of electronically messaging providers but only among respondents who lacked trust in physician confidentiality. Electronic messaging is potentially a means to reach this underserved population.
Rachel Rowe and Niamh Stephenson
Where modern public health developed techniques to calculate probability, potentiality, risk and uncertainty, contemporary finance introduces instruments that redeploy these. This article traces possibilities for interrogating the connection between health and financialisation as it is arising in one particular example – the health impact bond. It locates the development of this very recent financial innovation in an account of public health’s role within governance strategies over the 20th century to the present. We examine how social impact bonds for chronic disease prevention programmes bring two previously distinct ways of thinking about and addressing risk into the same domain. Exploring the derivative-type properties of health impact bonds elucidates the financial processes of exchange, hedging, bundling and leveraging. As tools for speculation, the functions of health impact bonds can be delinked from any particular outcome for participants in health interventions. How public health techniques for knowing and acting on risks to population health will contest, rework or be subsumed within finance’s speculative response to risk, is to be seen.
Chloe Shaw, Elizabeth Stokoe, Katie Gallagher, Narendra Aladangady and Neil Marlow
The article analyses the decision-making process between doctors and parents of babies in neonatal intensive care. In particular, it focuses on cases in which the decision concerns the redirection of care from full intensive care to palliative care at the end of life. Thirty one families were recruited from a neonatal intensive care unit in England and their formal interactions with the doctor recorded. The conversations were transcribed and analysed using conversation analysis. Analysis focused on sequences in which decisions about the redirection of care were initiated and progressed. Two distinct communicative approaches to decision-making were used by doctors: ‘making recommendations’ and ‘providing options’. Different trajectories for parental involvement in decision-making were afforded by each design, as well as differences in terms of the alignments, or conflicts, between doctors and parents. ‘Making recommendations’ led to misalignment and reduced opportunities for questions and collaboration; ‘providing options’ led to an aligned approach with opportunities for questions and fuller participation in the decision-making process. The findings are discussed in the context of clinical uncertainty, moral responsibility and the implications for medical communication training and guidance.
Lorna Rouse and W.M.L. Finlay
The limited existing research on diabetes management and intellectual disabilities (ID) highlights the need for further exploration of the concept of responsibility. This study explored repertoires of responsibility in accounts of managing diabetes for adults with ID. Fourteen semi-structured interviews were conducted in the UK with seven adults with mild/moderate ID and type 1 or 2 diabetes and seven people who they nominated as supporting their diabetes management. A discursive psychological analysis found that interpretative repertoires relating to competence, independence and accountability were drawn on to construct multiple and sometimes conflicting versions of responsibility. Within these repertoires people with ID were positioned in conflicting ways; as competent, personally responsible, and entitled to independence and choice, but as also lacking competence, dependent on others and incapable of overall accountability. People with ID often took up empowering positions defending against an incompetent identity. Supporters built accounts which negotiated dilemmatic repertoires on the dual responsibilities of empowering adults with ID to self-manage and managing risk to support good and safe care. The implications of available discursive resources and the ways in which they are mobilised are considered.
Teresa S. Puvimanasinghe and Ian R. Price
Sri Lanka has recently emerged from a three decade long civil war between government forces and the Liberation Tigers of Tamil Eelam. Behind the actual arena of conflict, forms of organised violence were often perpetrated on ordinary Sri Lankans who came into contact with law enforcement officials and other state authorities. The effects of these encounters on mental health, well-being, and community participation can be severe and long-lasting. Considering the generally poor availability of mental health services in many low-income countries, brief efficient interventions are required to enhance the lives of individuals and their families affected by torture, trauma, or displacement. In this context, the present study evaluated the effectiveness of testimonial therapy in ameliorating the distress of Sri Lankan survivors of torture and ill-treatment. The results indicated that over a 2- to 3-month period, psychosocial functioning was significantly enhanced in the therapy group compared to the waitlist control group. The general benefits of testimonial therapy, the ease with which it can be incorporated into ongoing human rights activities, and its application by trained nonprofessionals encourage greater use of the approach.
Kimberly Matheson, Amy Bombay, S. Alexander Haslam, and Hymie Anisman
Embracing a shared social identity typically serves to protect group members in the face of threats. However, under some conditions, intragroup dynamics are diverted so that instead, they contribute to disturbances in collective well-being. The present analysis applies a social identity framework to understand how intragroup processes elicited in Indian Residential Schools (IRS) altered the capacity of Indigenous peoples to overcome damage to their identity and collective functioning. With the alleged goal of assimilating the Indigenous population, residential schools in Canada entailed the forced removal of Indigenous children from their communities. A Truth and Reconciliation Commission established in 2008 confirmed the extensive abuse perpetrated by IRS staff, but also raised awareness of the pervasiveness of student-to-student abuse. Supported by qualitative analyses of the reports of social service providers working with IRS survivors (N = 43), it is argued that a key part of the dynamics in the IRSs was the subversion of intragroup processes among Indigenous children in attendance. Understanding intragroup dynamics provides a basis for recognizing the persistent effects of IRSs, and for identifying strategies to heal and reclaim a positive collective identity.
Nicholas J. Carson, Arlene M. Katz, and Margarita Alegría
Clinicians in community mental health settings frequently evaluate individuals suffering from physical health problems. How patients make meaning of such “comorbidity” can affect mental health in ways that may be influenced by cultural expectations and by the responses of clinicians, with implications for delivering culturally sensitive care. A sample of 30 adult mental health intakes exemplifying physical illness assessment was identified from a larger study of patient–provider communication. The recordings of patient–provider interactions were coded using an information checklist containing 21 physical illness items. Intakes were analyzed for themes of meaning making by patients and responses by clinicians. Post-diagnostic interviews with these patients and clinicians were analyzed in similar fashion. Clinicians facilitated disclosures of physical suffering to varying degrees and formulated them in the context of the culture of mental health services. Patients discussed their perceptions of what was at stake in their experience of physical illness: existential loss, embodiment, and limits on the capacity to work and on their sense of agency. The experiences of physical illness, mental health difficulties, and social stressors were described as mutually reinforcing. In mental health intakes, patients attributed meaning to the negative effects of physical health problems in relation to mental health functioning and social stressors. Decreased capacity to work was a particularly salient concern. The complexity of these patient–provider interactions may best be captured by a sociosomatic formulation that addresses the meaning of physical and mental illness in relation to social stressors.
This article examines contemporary Ukrainian psychiatry through the voices of patients, practitioners, and advocates, focusing on shifting objects of knowledge, interventions, and institutional transitions. Currently, we are witnessing the reconfiguration of psychiatry on a global scale through neoliberal rhetoric combined with the call for global mental health. The goal of the movement for global mental health is to scale up psychiatric treatments through greater access to psychiatric drugs, justified through the framing of distress as an illness. Neoliberal rhetoric suggests that cutting social service expenditure through the privatization and decentralization of the health care system will stimulate economic growth and, in the long term, combat poverty. This paper traces how these dynamics are playing out in Ukraine, drawing on ethnographic fieldwork conducted at a psychiatric hospital in south-central Ukraine from 2008–2010, while working with a non-governmental organization
Qais Alemi, Sigrid James, and Susanne Montgomery
This qualitative study explored how Afghan refugees conceptualize frames of mind that may reflect depression in general and as it relates to trauma they experienced. We performed in-depth interviews with 18 Afghans residing in the San Diego area. Views regarding the causes, symptoms, and perceived treatments of depression were gathered through free-listing techniques, and supplemented with narratives relating to pre- and post-resettlement stressors and coping mechanisms. Data were analyzed with standard qualitative content analysis methods. Items endorsed with relation to depression causality included pre-migration war traumas, notably separation from family, and post-migration stressors including status dissonance and cultural conflicts that ranged from linguistic challenges to intergenerational problems. Depressive symptoms were viewed as highly debilitating, and included changes in temperament, altered cognitions, avoidance and dissociative behaviors, and somatic complaints. Relief was sought through family reunification and community support, reliance on prayer, and the academic success of their children in the US. The findings underscore the need for practitioners to take into account situational stressors, cultural aspects of mourning and symptomatology, and existing coping mechanisms in developing interventions that are based on refugees’ articulated needs.
Ayesha Ahmad and Simon Dein
Multicultural societies such as the United Kingdom are host to people with diverse belief systems and behavioral norms. Whilst a country requires that all members of society conform to standardized legal requirements, cases arise that involve certain complexities related to the cultural or religious context in which a certain action was committed. This paper addresses the impact of culture on notions of criminal responsibility and action. Through a case study of a recent event in the United Kingdom, we explore whether a cultural defense is relevant for contextualizing incidents in which an individual commits a criminal action during an alleged period of spirit possession From this analysis, we suggest that using a cultural defense can aid understanding of an individual’s relationship to the society that he or she identifies with and facilitate the practice of justice in a multicultural society.
Special Issue! Resisting Power, Retooling Justice: Promises of Feminist Postcolonial Technosciences by Anna Zogas
In advance of our regular In the Journals post, I want to highlight a Special Issue. Anne Pollock and Banu Subramaniam have guest edited “Resisting Power, Retooling Justice: Promises of Feminist Postcolonial Technosciences,” in Science, Technology & Human Values. Here are the abstracts!
Resisting Power, Retooling Justice: Promises of Feminist Postcolonial Technosciences
Anne Pollock, Banu Subramaniam
This special issue explores intersections of feminism, postcolonialism, and technoscience. The papers emerged out of a 2014 research seminar on Feminist Postcolonial Science and Technology Studies (STS) at the Institute for Research on Women and Gender, University of Michigan. Through innovative engagement with rich empirical cases and theoretical trends in postcolonial theory, feminist theory, and STS, the papers trace local and global circulations of technoscience. They illuminate ways in which science and technology are imbricated in circuits of state power and global inequality and in social movements resisting the state and neocolonial orders. The collection foregrounds the importance of feminist postcolonial STS to our understandings of technoscience, especially how power matters for epistemology and justice.
Informed Refusal: Toward a Justice-based Bioethics
“Informed consent” implicitly links the transmission of information to the granting of permission on the part of patients, tissue donors, and research subjects. But what of the corollary, informed refusal? Drawing together insights from three moments of refusal, this article explores the rights and obligations of biological citizenship from the vantage point of biodefectors—those who attempt to resist technoscientific conscription. Taken together, the cases expose the limits of individual autonomy as one of the bedrocks of bioethics and suggest the need for a justice-oriented approach to science, medicine, and technology that reclaims the epistemological and political value of refusal.
Research often characterized as “new materialist” has staged a return/turn to nature in social and critical theory by bringing “matter” into the purview of our research. While this growing impetus to take nature seriously fosters new types of interdisciplinarity and thus new resources for knowing our nature-cultural worlds, its capacity to deal with power’s imbrication in how we understand “nature” is curtailed by its failures to engage substantively with the epistemological interventions of postcolonial feminist science studies. The citational practices of many new materialist thinkers eschew the existence of what Sandra Harding has called “a world of sciences.” I argue that the “science” privileged and often conflated with matter in new materialist storytelling is the same science destabilized by postcolonial feminist science studies. This does not mean that new materialist feminisms and postcolonial feminist science studies are necessarily at odds, as new materialist storytelling and prevailing conceptualizations of the postcolonial seem to suggest. On the contrary, I suggest that thinking creatively, capaciously, pluralistically, and thus irreverently with respect to the rules of science––about the boundaries and meanings of matter, “life,” and “humanness”––could be understood as a central project for a postcolonial feminist science studies.
This article examines a genetic ancestry testing program called the Living History Project (LHP) that was jointly organized by a nonprofit educational institute and a for-profit genealogy company in South Africa. It charts the precise mechanisms by which the LHP sought to shape a postapartheid genome through antiracist commitments aimed at contesting histories of colonial and apartheid rule in varied ways. In particular, it focuses on several tensions that emerged within three modes of material-discursive practice within the production of the LHP: subject recruitment, informed consent, and participant reflections. In the end, it argues that several contradictory tensions were central to the making of the LHP’s postapartheid genome and that it should be understood as nonracial rather than antiracist.
In 1984, eight-year-old Paula Logares was called into a judge’s chambers and was told the man and woman she lived with were not her parents. Her parents had been disappeared during the dirty war, and now, through her blood, scientists would be able to return her to her birth family. Paula, thus, became the first “stolen” child in Argentina to be identified via the incipient technology of DNA identification. With this forensic first, DNA identification has emerged as a central tool of good governance the world round. From routine crime fighting to international criminal tribunals, DNA plays a crucial role in attempts to reckon with crimes of the body. As an alternative origin for forensic DNA, Argentina offers an early example of science emerging from social movements in the Global South. Drawing on twenty-seven months of fieldwork with family members, activists, and scientists, this article documents the ways in which DNA has emerged as a core site of subject formation for individuals and families affected by the terror of the dictatorship and for the Argentine nation-state, as it reckons with the legacies of repression. Through a feminist, postcolonial frame, I offer the concept of re(con)stitution as a way of attending to the forms of biocitizenship that emerge during times of humanitarian crisis and transitional justice. As a tool of reproductive governance, forensic DNA acts not only as a powerful disciplinary site of biocitizenship but also as a potential space to reimagine the social contract between the body, the public, and the state.
A distinctive form of anticolonial analysis has been emerging from Latin America (LA) in recent decades. This decolonial theory argues that important new insights about modernity, its politics, and epistemology become visible if one starts off thinking about them from the experiences of those colonized by the Spanish and Portuguese in the Americas. For the decolonial theorists, European colonialism in the Americas, on the one hand, and modernity and capitalism (and their sciences) in Europe, on the other hand, coproduced and coconstituted each other. The effects of that history persist today. Starting thought from these LA histories and current realities enables envisioning new resources for social transformations. These decolonial insights seem to receive only a passing recognition in the Latin American social studies of science and technology projects that have begun cosponsoring events and publications with northern equivalents. My focus will be primarily on the decolonial theory and on just two of its themes. One is the critical resources it offers for creating more accurate and progressive northern philosophies and histories of science as well as social studies of science. The second is insights from Latin American feminists that carry different impacts in the context of the decolonial accounts.
Last fall, a group of researchers – mostly biological anthropologists and sleep researchers – published a study of three ‘pre-industrial’ communities, one in Latin America, two in Africa, and claimed that based on their data, consolidated nightly sleep is a human norm, inferring that it is the product of natural selection. The media picked up the research findings, and I read write ups of it in a number of outlets, which led me to the original article and sparked conversations with me and other sleep-interested scholars about the validity of the research. A couple of months later, I was asked by the editor of Sleep Health if I would like to respond to the findings of the article (which you can find here), in part because the researchers made an argument against a claim that I have made – corroborating Roger Ekirch – that human sleep has only recently consolidated, largely as a result of industrial capitalism in the 19th century. But I was primarily motivated by the anthropology-informed opportunity to point out that no contemporary society offers us a window to some pre-industrial past or earlier evolutionary moment. To suggest otherwise – and here I’m quoting myself – ‘verges on scientific racism.’
So what was the assumption that the researchers were working off of that would lead them to such a claim and why would I find it controversial? They took a form of social organization – namely hunter-gatherer foraging – as indicating that the people who practice that form of subsistence share qualities with a stage of human history when that social organization was predominant. Put another way, they assumed that modern hunter-gatherers are fundamentally the same as hunter-gatherers from earlier periods in human history. With that assumption in place, one can infer that beyond their subsistence pattern are other shared practices, including sleep. That these three communities each slept in consolidated, nightly fashion was then taken as a window onto our shared human evolutionary past, and led the researchers to make the further inference that humans have always been consolidated sleepers. Where there is variance from that pattern, we might be seeing something like social preference or ‘culture’ interfering with basic human biological patterns.
This idea that a modern society could stand in for a pre-industrial society is akin to what sociocultural anthropologists refer to as ‘unilineal evolution.’ This understanding of social development arose in the 19th century, at the very beginnings of modern social science, including sociology and anthropology, which were foundational in elaborating the theory. Although there were various theories of unilineal evolution, the overriding assumption shared by its proponents was that Western civilization (in which they meant Western Europe, Canada, and the U.S.) was the most advanced form of social organization, and that all other societies were developing towards this pinnacle of scientific rationality, freedom from violence, objectivity, orderly laws, aesthetics, and economy. So, parts of Eastern Europe might be construed as close to the Western ideal – as might Japan – and Central America, Africa, interior Asia, and the island Pacific were seen as pre-modern. As anthropology developed as a discipline, unilineal evolution was quickly debunked, first by Franz Boas at the turn of the 20th century, and even more profoundly, and through a variety of sociological, historical, and philosophical means, by Johannes Fabian, Eric Wolf, Michel-Rolphe Trouillot, Faye Harrison, and their colleagues in the 1970s and 1980s. By the turn of the 21st century, one would be hard pressed to find a sociocultural anthropologist – or anyone in the social sciences – who believed that any modern society could offer a window onto our evolutionary past.
Where does scientific racism come into the equation? It was no mistake that the early proponents of unilineal evolution were all white men in Europe and the U.S. By building the theory of unilineal evolution in the way that they did, they rationalized Western civilization as the endpoint of social development. In so doing, they justified the civilizing missions of settler colonialism and global imperialism, suggesting that it was ‘the white man’s burden’ to uplift the savage societies of the colonies and American frontier. Race, for these early thinkers, was synonymous with earlier stages of social development, and distinctions were also made among white communities – between the urban elites and rural poor and working classes. White elites were the outcome of the civilizing process. Everyone else was in need of civilizational intervention. To support the theory of unilineal evolution, evidence about ‘modern’ societies needed to be disregarded or ignored, including ideas about superstition, religion, irrational orderings of society, gender bias, and legal and domestic violence. White elites, everyone came to agree by the turn of the 21st century, were just as subject to bias and irrationality and everyone else.
Unilineal evolution leant itself directly to early 20th century eugenics movements, providing ammunition for American and European political organizations that sought the promotion of some races over others. In The Mismeasure of Man, noted biologist Stephen Jay Gould thoroughly critiqued these early 20th century scientists and the implicit biases built into their science that led them to see some people and societies as more advanced and worthy than others. In the present, we continue to see inferences between race and behavior – despite the thorough debunking of the genetic reality of race. Whenever someone claims that a person or society behaves a particular way because of their race, they are participating in a kind of scientific racism that relies on a baseless understanding of race and conflates that with a faulty notion of social development. Similarly, when subsistence patterns – like hunter-gatherer foraging – are mapped onto particular places because of their evolutionary import, the people who practice those lifeways become conflated with earlier stages of human social – and potentially, evolutionary – development.
The debate I had stepped into by commenting on that sleep research is really at the heart of anthropology’s inability to communicate across the subdisciplines as they are currently configured, and emblematic of how anthropologists have a hard time communicating with people outside of the discipline. Biological and sociocultural anthropologists have moved further and further apart over the last century – and especially over the last 20 years – to the point that a whole department’s worth of biological anthropologists can subscribe to forms of biological reductionism that sociocultural anthropologists in the same department actively work to debunk. Medical anthropology, as a subfield, is particularly gripped by this inability to communicate, as we can have positivist, treatment-focused, lab-based scientists publishing in the same journal as deeply constructivist, interpretivist social scientists who conceptualize disease as largely a social byproduct. Moreover, as biological sciences outside of anthropology move further away from the social as an explanatory possibility, when a critique of biological sciences comes out of a society-focused discipline, like sociocultural anthropology, it seems to come as a broadside, spurious, or out of school. Consulting a sociocultural anthropologist at the beginning of a study might have led to the development of a very different research design – and one that stayed away from any controversial assumptions about race, society, and human evolution. Developing those kinds of consultancies and partnerships is important not only to produce socially-aware science, but science that produces valid knowledge.
Now, it has been several months since my response appeared in print, and I wonder if ‘verges on scientific racism’ was untoward. Does suggesting that the interpretation of a set of data might harbor racist or otherwise prejudicial assumptions thwart the goals of critique? Does it shut down the possibility for an interdisciplinary conversation, or are we just at a point where interdisciplinary conversations are impossible, at least between particular disciplines, and especially those interested in human evolution, biology, and history?
In an earlier version of my response, I hovered over the phrase ‘verges on scientific racism,’ wondering if it was the right wording. My concern wasn’t so much for the authors of the piece – my assumption was that they were unknowingly reproducing assumptions that social scientists and humanists had long debunked – but for people who might read the piece and take its findings at face value. My audience wasn’t the authors of the original piece, but, hopefully, other scientists who might forward a research agenda that would help get away from such assumptions about people, places, and history. I hoped that my critique might be taken as a teachable moment, since there was clearly a point of theoretical contact between the assumptions of the scientists and longstanding bodies of anthropological evidence. My assumption was also that ‘verges on scientific racism’ put enough rhetorical distance between actual racism and the authors of the piece that they might not see themselves reflected in my language – but rather see some of the assumptions in the science as part of the problem and work towards fixing them in the future. In fact, shortly after my response appeared, a group of scientists made a very similar critique.
I fully believe that it’s possible to have racist, or sexist, or classist, or any number of other prejudices buried in science and that you can have well-meaning, non-biased scientists practicing that science – that’s one of the basic assumptions of science studies. And it’s also the basis of critiques originating from science studies: pointing to the unmarked assumptions of knowledge production helps to expose implicit biases and helps to forge new ways forward that will – hopefully – lead us to better scientific understandings of the world and the things that inhabit it. The problem with prejudice, especially in the context of a scientific ideology, is that it rarely names itself (unless it’s The Bell Curve). Individuals can be indoctrinated into scientific practices and unknowingly reproduce findings that have implicit assumptions and biases (for example, the scientists in Emily Martin’s ‘The Egg & the Sperm’ and a recent Wellcome Trust-funded video game about fertilization).
At the end of the day, I chose the wording that I wrote, ‘verging on scientific racism,’ because I fundamentally believe in the advancement of science, and drawing attention to prejudicial assumptions should help us collectively forward a scientific agenda that sheds more light than darkness. I found it distressing that media outlets accepted the assumptions of that particular scientific paper — as if any science should be uncritically accepted. Scientific knowledge production is an ongoing project and no one should be afraid of being proven wrong – in findings or assumptions. Sometimes critique can be difficult to hear – and ‘verging on scientific racism’ might be especially harsh given the contemporary U.S. political climate – but only through honest critique can we begin to unfetter ourselves from the restraints that limit our scientific imaginations and build truly interdisciplinary research agendas that overcome assumptions in the social and biological sciences, especially about race and history.
Matthew Wolf-Meyer is Associate Professor of Anthropology at Binghamton University, in the State University of New York system. His work focuses on medicine, science and media in the United States, and draws on history, contemporary experiences and popular representations of health and illness. Wolf-Meyer is a contributing editor to Somatosphere.
This article first appeared on Anthropology News.
I have had the honor many times to present together with Triqui Mexican migrant farmworkers who have shaped my thinking and writing. These presentations have been planned collaboratively. Sometimes they involved my presenting a formal paper followed by a response from farmworkers. Other times they took the form of a conversation during which I interviewed my farmworker co-presenters, they interviewed me, the audience asked us questions and then we asked the audience questions. These presentations attempted to destabilize the producer and object of knowledge, the expert, the informant, and the respondent (while, in other ways of course, these positions were solidified).
During preparations for our presentation for the 2016 Association of American Geographers meeting, several Triqui farmworkers and I discussed the recent anthropological debates on suffering. In 2013, Joel Robbins, called for an end to what he terms, borrowing from Michel Trouillot, “suffering slot anthropology” and a move toward what he calls an “anthropology of the good.” Joseph Hankins posits a different, yet related dichotomy, suggesting anthropologists should utilize a framework he denotes “ecology” to elucidate connections instead of a representation of suffering that he sees as engaged to build an empathic bridge between the reader and the other in hopes for social change. More recently, Sherry Ortner attempts to patch together this dichotomy she frames as “dark anthropology and its others.”
In our conversations about such dichotomies and their critiques of anthropological attention to suffering, Francisco Ventura Martinez, a Triqui Mexican migrant farmworker and father living in Central California, stated in Spanish, “We suffer a lot [sufrimos mucho]. We suffer crossing the border from Mexico. We suffer bent over picking strawberries or cutting asparagus so people can have food. We suffer being treated badly because of the color of our skin and our language.” Armando Celestino Ventura, his nephew, added, “Children suffer moving between schools when we migrate.”
Of course, these conversations on suffering were interspersed with others attending to joy—giving birth, graduating from school—and resistance, such as recent policy changes won by farmworker organizations. As Leslie Butt and others deftly remind us, it is important to represent people not as mere “suffering strangers” but rather in their full, multi-faceted experiences making sense of, at times legitimizing, and at times resisting and disrupting the systems in which they are positioned and position themselves. Life in many parts of the globe includes suffering, violence, resistance, hope and care, often difficult to avoid as well as often intermingled and difficult to separate. My co-presenters ask that we should not flatten the multi-faceted nature of life by leaving out any of these realities, including those experienced as suffering.
Preparing for a presentation to Sonoma State University, Francisco explained, “it is important for gabachos [white Americans] to hear that we suffer a lot to raise and harvest their food” (see also Carney). Later, during the AAG presentation, Francisco explained to the audience, “I hope that in hearing about our lives and our suffering, hearts will be touched and the ways we are treated will slowly change.” He asked those present to tell others what they heard. At the end of the presentation, Francisco, Armando and Elio Santos, Binational Coordinator of Youth for the Frente Indigena de Organizaciones Binacionales, encouraged the audience to consider how such academic meetings could support immigrants and farmworkers. In these ways, my Triqui and Mixtec co-presenters explicate the sharing of their experiences of suffering as one way in which they exercise precisely what anthropologists conceptualize as moral action, resistance, agency, working toward more livable lives and better futures.
Ethnographic Refusal, Experiences of Suffering and Resistance
In 1995, Sherry Ortner called anthropologists to avoid “ethnographic refusal,” sanitizing through the erasure of uncomfortable realities. I worry that conjectured dichotomies separating attention to suffering from attention to “the good” or elucidation of connections foster a specific ethnographic refusal in which anthropology students are counseled or ridiculed away from theorizing and representing realities their research participants may experience and narrate as suffering and violence.
In the midst of racialized hyperincarceration, urban and rural police, state, and para-military violence, as well as growing social and economic inequalities in the context of multinational corporate exploitation and free trade agreements, many people in the world experience and articulate important aspects of their lives in terms of suffering and violence. Some of these people, like Francisco, Armando, and other Triqui and Mixteco farmworkers I have come to know, ask anthropologists to analyze, theorize, and write about these experiences. They share their stories of suffering both in a frame of interconnected ecology (“we suffer a lot to raise and harvest their food”) and in hope for affective response (“hearts touched”) that may lead to a different future. A refusal to acknowledge and seek to understand the effects of these realities pushes anthropology away from an ethical “passion for society” (Wilkinson and Kleinman) and risks (further) irrelevance to many outside academia. Francisco, Armando, Elio and others have asked academic audiences, rather, to do the opposite.
Who Suffers and Who Cares? Destabilizing Dichotomies
At Cosumnes River College, a student asked Francisco what he thought when his family first met me. Francisco replied, “[Seth] was alone in the labor camp and we worried about him. Everyone else was there with family. We didn’t want him to be sad.” I had not realized this was the perception I gave off (or reality I was unable to hide). And I had not realized that Triqui people had shared with me not so much because of my anthropological skills or even simply my friendliness, but rather because they saw me as vulnerable and sad and they engaged in care.
Such multi-vocal presentations remind me that social positions are neither unidimensional nor stable. Rather, Francisco and Armando articulate suffering and care response as important both for anthropologists to understand their experiences and for farmworkers as caring subjects responding to the anthropologist who is vulnerable and suffers.
In ongoing conversation and relationship with those who contribute to our scholarship, we may learn a great deal about ourselves, difference, representations of knowledge, suffering, violence, hope, morality and care. Engaging with, listening to, theorizing, writing about, and attempting to respond to the realities, understandings, and requests of our research participants —including those experiencing and articulating violence and suffering—seem to me the central roles of anthropology into the future.
Seth Holmes is Associate Professor of Medical Anthropology & Public Health at U.C. Berkeley. His work focuses broadly on social hierarchies, health inequalities, and the ways in which perceptions of social difference may naturalize, normalize, or challenge these inequalities.
Now drowned in the torrent of post-election analysis, on October 26, 2016, the journal Nature published a study which traced genomic data in an effort to map the spread of HIV in North America. The newsworthy conclusion of the study was a full-throated scientific vindication of Gaetan Dugas, the man erroneously dubbed “Patient Zero” in Randy Shilts’ And the Band Played On, a popular depiction of the spread of HIV in the United States during the early 1980s. Dugas was a French-Canadian flight attendant who became a person of interest in the epidemiological detection of HIV in its early days, since he had had sexual contact with so many of the early cases on the West Coast. The original researchers dubbed him “patient ‘O’” (for “outside”); Shilts and others translated this as “patient ‘0’”, or the index case. Shilts also portrayed Dugas as willingly careless and negligent. The study published in Nature concluded that Dugas was not the index case in North America; his demonization by Shilts and other media has been corrected.
The fervor over this vindication — garnering editorials and spots in The New York Times (here and here), NPR, the Chicago Tribune, New York Magazine, and Science magazine, among others — led me to reflect on the spectacle of disease narratives, not only what they emphasize, but what they tend to obscure. Epidemics are both disease events and media events. The spectacle of disease — the “literary” construction of a disease event in media, especially visual media — constitutes the social and political force of epidemics.
As someone interested in literature and its cultural stakes, I turn to Priscilla Wald who has written arguably the definitive statement of what an epidemiological narrative is and how it takes shape. In her book Contagious: Cultures, Carriers, and the Outbreak Narrative, Wald argues that disease outbreaks are in large part constructed through the crafting of a narrative, usually involving an index case or a “patient zero” such as Typhoid Mary or Gaetan Dugas (Wald 2008). The production of these narratives is typically bound up with literary concerns, such as the assignment of “hero” and “villain” status to a person or group. These narratives have tangible effects on policy and public health administration. In typical outbreak narratives, the hero is the scientist or doctor, the villain is the disease and its human carriers. “Typhoid Mary,” a woman named Mary Mallon, spent decades in quarantine, and died in custody: she was widely demonized, and public health officials enjoyed the glory of containing such a scourge. Mallon’s nom de criminel is still a euphemism for a person with dangerous influence. For example, a character named “Typhoid Mary”, also known as “Mutant Zero”, appears as a supervillain in Marvel comic books — not as a typhoid carrier but as a lustful, murderous mentally ill criminal.
Mary Mallon’s story is a tragedy, not only because of the people who contracted typhoid from her, but because of the sense we get that all of her “villainous” qualities seemed out of her control: she was an asymptomatic typhoid carrier, but also she insisted that the authorities had no right to imprison her and perform medical tests on her body. Her very resistance was considered criminal — she was putting the public at risk, after all, so her incarceration and forced testing were considered justified in the name of social security. Wald argues that Mallon’s predicament played out in the media as a matter of defense of class and race: “Mallon’s ethnicity, class, and occupation, combined with her condition, ensured her transformation into an object of disgust and reprobation in the public health and medical literature of the period” (Wald 1997, 195). She was criminalized and systematically represented as a threat to social and cultural norms. As with Mallon, since the study in Nature, Dugas’s story has been recast as a tragedy, again not only for the role he played in transmitting a fatal disease, but because we are faced with a case in which the “perpetrator” is also a “victim.” The irony, of course, is that the “truth” of the Dugas story was well known by the CDC investigators who originally interviewed him, and that it took a scientific study — DNA evidence, as in a criminal investigation — to exonerate him.
Charles Rosenberg also highlights the apparent similarities between epidemics and literary narratives. For example, in a 1989 essay “What is an epidemic? AIDS in historical perspective”, Rosenberg outlines the “dramaturgic model” of epidemics in which
Epidemics start at a moment in time, proceed on a stage limited in space and duration, following a plot line of increasing and revelatory tension, move to a crisis of individual and collective character, then drift toward closure. (Rosenberg 1989, 2)
His focus on the tension of an epidemic being “revelatory” — that is, revealing some underlying truth of the demos among which the outbreak has occurred — and the “crisis of individual and collective character” places emphasis on the self-reflective questioning that arises in the heat of epidemic virulence. Suddenly, all the uncertainties, anxieties, and fears that had been kept hidden by the social mores of civilian life bubble to the surface. Neighbors reject one another’s company, government authorities assume strict controls over movement and treatment, and newspapers publish editorials wondering how many civil liberties must be surrendered in order to establish safety and security. In the case of the AIDS crisis, the script may have been flipped: government authorities didn’t do enough to stop the disease or manage its treatment given a (well-documented) moral fear of homosexuality, which had been unscientifically and unfairly tethered to the disease as part of the construction of an “outbreak narrative.”
This leads me away from the sound and fury of the spectacle of epidemics toward the ending of Rosenberg’s drama: the closure, the moment when the curtain drops and the house lights come up, when the narrator falls silent. This is what is “troubling” about the vindication of Gaetan Dugas. He was the closure, he satisfied the need for an “ending,” which is really the hunger for meaning, to impute straight-forward sense onto a brutal, irreducibly complex socio-biological “imbroglio,” to borrow a term from Bruno Latour. The study in Nature, in “setting the record straight” on Dugas, in doing some belated and posthumous justice by de-vilifying him, pulls back the curtain on the HIV spectacle. A spectacular crisis tends to be all-encompassing, such that when the crisis abates and the key to the mystery is unveiled — it was the flight attendant, in the bath house, with the virus — the audience can feel as though it needn’t bother with critical consciousness any longer. With Dugas in his role as villain, the event is given meaning, even if that meaning is false and only serves to perpetuate fear of the Other.
I wonder if the vindication of Gaetan Dugas should highlight the less dramatic and more structural “realities” that give rise to or even facilitate crises at the outset. Perhaps we can be reminded to pay attention to the price of the tickets and the plushness of the seats and the ornateness of the proscenium arch — that is, what is not on stage may be as important and compelling as the main action. When the drama begins, the lights dim, and we cannot see ourselves, or the person sitting next to us. We quiet down; during the intensity of the performance it would be wrong to speak out against what we see. Under the spell of a spectacular outbreak narrative, we are seduced by the immediacy of the crisis and perhaps lose sight of the ongoing social and political inequalities that are difficult or impossible to narrate, either because they are quiet, or invisible, or so slow they do not fit into a news cycle or a sound bite. But we need to remain vigilant.
I am reminded of what is already a classic work of social and environmental criticism, Rob Nixon’s Slow Violence and the environmentalism of the poor. Nixon, a literary scholar who takes aim at social and environmental concerns, analyzes the deep connection between the way we tell stories and the way we act politically. Slow Violence focuses on environmental violence that occurs over long time spans, the urgency of which is undervalued, and that most often affects populations with less power and less privilege. His work resituates catastrophic events like global warming — or for our purposes, global health crises and disease outbreaks — in light of the value we place on the shape of the narrative, its ability to proliferate across contemporary media and to compete with other spectacles vying for our attention. Giving meaning to what happens slowly, unspectacularly, is a real and important challenge. Nixon wonders,
In an age when the media venerate the spectacular, when public policy is shaped primarily around perceived immediate need, a central question is strategic and representational: how can we convert into image and narrative the disasters that are slow moving and long in the making, disasters that are anonymous and that star nobody, disasters that are attritional and of indifferent interest to the sensation-driven technologies of our image-world? (Nixon 2011, 3)
This question haunts me and motivates me as a scholar and as a person, one among many contemplating uncertain political, economic, and environmental futures. How do we more effectively push back against the spectacular narratives that continually recast heroes and villains, the glorious and the unacceptable, the righteous and the deplorable? And how do we craft new narratives that leave the solutions unsettled and that never collapse in a moment of closure?
The public, media-driven morality play of AIDS in America, featuring Dugas as a seductive demon, took shape and ossified rapidly, despite the best efforts of activists and gay rights groups to tell a different story with human rights at its center. The “final” vindication of Gaetan Dugas almost thirty years later undermines the power of the outbreak narrative since it exposes the monster as a lover, a friend, a flawed person caught in the matrix of an “image-world”. It should also help us look askance at the spectacle, to question its purpose, and to wonder about the complex, subtle events off stage-left, in the dark pool created by the spotlight.
Greg Clinton is a PhD candidate in Cultural Studies at Stony Brook University. He is writing a dissertation titled “The Architecture of Safety: Bunkers, Shelters, and Clean Rooms” that analyzes the practices and production of “safe space” in the context of toxic, risky, violent, and porous environments. Greg is managing editor of Somatosphere.
Nixon, Rob. 2011. Slow Violence and the Environmentalism of the Poor. Cambridge, Mass.: Harvard University Press.
Rosenberg, Charles E. 1989. “What Is an Epidemic? AIDS in Historical Perspective.” Daedalus 118 (2): 1–17.
Wald, Priscilla. 1997. “Cultures and Carriers: ‘Typhoid Mary’ and the Science of Social Control.” Social Text, no. 52/53 (October): 181–214. doi:10.2307/466739.
———. 2008. Contagious: Cultures, Carriers, and the Outbreak Narrative. 1 edition. Durham: Duke University Press Books.
Commentary and speculation after this election have focused on voters’ motives and emotional states, and, especially in the day or two after the result, why experts didn’t know in advance how this would turn out. Why did public opinion polling skew the way it did? What does this teach us about voting and its psychological and social dimensions? These questions touch upon areas of interest and practice among Somatosphere readers—intention, the plastic brain, political subjectivity, and biosocial and neurosocial collaborations have all been addressed in these pages in ways relevant to understanding politics. Still, we readers and contributors may not usually be professionally involved in the political arena; we may feel less than personally addressed by questions about prediction and public opinion, and the popular debate about “media responsibility” that ensues. I’m not going to suggest that we change either of those things and “get involved.” But with all our varied expertise, at the interface of the mind, the body, and the social, we may have more tools handy than we might think to help in understanding—really understanding—current events. While we might want to continue cultivating our gardens, as it were, I think that just working over our own specialist knowledge and theories at a time like this can itself contribute something of importance to the public sphere, and in fact provides a basis on which we can know more about what just happened. The historian and New Yorker writer Jill Lepore said, on the “Politics and More” podcast on November 11, that when it comes to historical models and political science predictions, “what we thought we knew we don’t know anymore.” Other kinds of knowledge about politics are urgently needed.
After the election, for myself, I started to think about psychoanalytic theory and what it tells us about the results and their consequences. For example, Freud observed long ago that the kinds of persons who occupy high political office matter, and not only because of the power they wield; the events (both public and personal) that touch those offices and their incumbents affect people’s psychic lives (I’m thinking of the “Mass Psychology” and “Fetishism” essays). Freudian theory indicates that how we identify with politicians and even abstract institutions can determine what within ourselves we are able to find valuable, what parts of our own character we can cultivate. On this understanding, political results have deep implications for the culture we live in.
But Freud was not the most immediate source, for me, of insights of value and use. I wanted to think more concretely about what certain psychoanalytic (and anthropological) theories offer by way of a widened understanding of technical issues of democracy. I wanted to think about how public opinion is forged and democracy is done. An essay by D. W. Winnicott, “Some Thoughts on the Word ‘Democracy’” came to mind, and upon re-reading it seemed to have tangible lessons to offer. In what follows, I will discuss what Winnicott had to say about what he called “democratic machinery”—voting, opinion, and leadership. The broader lesson I want to take away from this reading is that our interpretive disciplines, forms of personal knowledge, and ethnographic work may in fact offer a robust basis for critical engagement with how our legal and political institutions work, as well as offering insights into how they work upon, with, and also within us. Understanding these latter dimensions of politics—for which we don’t even have a common vocabulary—is one prerequisite for better institutions.
* * *
In 1950, the psychoanalyst D. W. Winnicott tread upon the specialist terrain of political science, with apologies for his ignorance of their technical vocabularies, to offer “Some Thoughts on the Word ‘Democracy’” (this essay was originally published in Human Relations and has been reprinted twice, in The Family and Individual Development and the collection Home is Where we Start From; page numbers here are from the latter). He stipulated that democracy is a psychological and a social achievement of a healthy and mature society, a matter of “democratic machinery” which allows for “the expression of feelings, apart from conscious thoughts” (241, italics his). Specifically, he argued that unconscious feelings and identifications are uniquely expressed through the secret ballot, and by this means become integral to democratic functioning. Moreover, in order for an election to really express a collective judgment of what is to be done, the secret ballot is not enough: there must be persons for whom to vote, not ideas or principles, because only a person can make promises, respond to unconscious demands, and change if necessary to meet new situations (249). Only a person can bear the delegated responsibility which is equally important to democracy.
Through such democratic machinery, the voter’s inner world is “turned into a political arena for a limited time,” while psychological struggles play out—in intensified, dramatic forms—in the external world of political competition (241). Winnicott was careful to add that because it implicates the unconscious and personal psychic realities, democratic machinery has to work in ways that allow for irrational results—as the legitimate expression of real unconscious feelings—but also to provide means of fixing them.
As for public opinion polling, Winnicott cautioned that, without the anonymity and secrecy of the voting booth, polling can only solicit reiterations of abstract party-principles or slogans. It cannot measure the underlying feelings they tap into, and hence, opinion polls can provide only limited indications of actual ballots. He of course was aware of the highly technical nature of polling and opinion research, and noted that “a great deal of trouble is taken to avoid exactly this pitfall” (250), but in his view the problems remained (as, perhaps, we have just learned again).
Winnicott’s thoughts on gender and the role of women in politics seem less timely, even particularly limited and limiting (we need to read psychoanalytic theory with a healthy dose of feminism and even melancholy, insofar as both can widen our sense of what kind of identifications are possible within and across genders). He noted that, at the time of his writing, men occupied almost all the high political offices in the world, but he grounded this political (in a deep sense) fact in a psychological complex, a fear of dependency that he traced back to the infant’s ambivalent love and hate for its mother who both cares for it and controls it. This verges on a parody of psychoanalytic speculation. But Winnicott’s argument is not about actual men and women and their relative fitness for command of the political unconscious (as Margaret Thatcher’s much later political success indicated, among other late twentieth century women leaders). Rather, Winnicott notes that whosoever successfully appeals to unconscious fantasy—fearful and unmasterable ideas buried in our psyche—will by this means be gifted with the group’s power, in compensation for the unthought debt which emerges from our bodily dependence on each other, as a condition of our very social being. In his own words:
“The tendency of groups to accept or even seek actual domination is derived from a fear of domination by a fantasy Woman. This fear leads them to seek, and even welcome, domination by a known human being, especially one who has taken on himself [or herself] the burden of personifying and therefore limiting the magical qualities of the all-powerful Woman of fantasy, to whom is owed the great debt” (253).
Read today, these thoughts about unconscious domination offer much more than just a psychoanalytic theory of charisma, and indeed say something beyond their immediate reference to dictatorship. Winnicott seems to be addressing here the potential within democratic machinery for its own subversion, when its users fail to understand the wellsprings of the power it provides. He draws our attention to unacknowledged debt, felt (but not thought) resentment, and unsatisfied yearnings for solidarity (misconceived as “greatness”), as elements of that machinery that must be reckoned with if the machinery itself is not to break down. Progressive politicians may have something to think about, in these terms.
Understanding and anticipating the outlook of voters is perhaps the most challenging task of any democracy, and it is both a technical craft and a political art. But there is a real danger, internal to democracy, when the search for understanding becomes too technicized, too demographic and instrumental. That is what Winnicott was talking about when he emphasized the need for, the positive value of, a machinery that can deal with unconscious identifications while not manipulating or directing them. In a sense, he was pointing to the moral importance of core democratic values of letting each individual decide for him and herself (though not in a vacuum or absent other considerations that may shape the alternatives presented).
Most importantly, reading Winnicott helps highlight the danger of political words, messages, and slogans that mean too little as much as too much. Winnicott helps us see how democratic machinery can be affected not only by the charismatic leader who sways the passions, but also by the small-bore demagogue who only speaks to the conscious, distorted, “split off” level of thoughts. This kind of politician produces only narrow reactions rather than truly personal actions of the voter as a whole person, with her complex and individual history. On this understanding, and at this moment of crisis, we might then recall that recovering persons and their history is the special task of psychoanalysis and ethnography, and this can also be their political vocation.
Leo Coleman is Associate Professor of Anthropology at Hunter College, City University of New York. His book A Moral Technology: Electrification as Political Ritual in New Delhi is forthcoming from Cornell University Press. firstname.lastname@example.org
Book Forum — Emily Yates-Doerr’s “The Weight of Obesity: Hunger and Global Health in Postwar Guatemala” by Rebeca Ibáñez Martín
It is a pleasure to convene this forum for The Weight of Obesity: Hunger and Global Health in Postwar Guatemala. Marianne de Laet, Simon Cohn, and Jeannette Pols, have provided spirited commentaries on Emily Yates-Doerr’s ethnography of metrics, weight, and care in highland Guatemala. The author’s talent to illustrate the complex choreographies that produce the problem of obesity makes this a truly delightful piece of work to collectively unpack. We hope you enjoy the discussion.
Rebeca Ibáñez Martín
University of Amsterdam
Marianne de Laet
Harvey Mudd College
London School of Hygiene and Tropical Medicine
Academic Medical Centre of Amsterdam
A reply by
University of Amsterdam
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Configurations of diagnostic processes, practices, and evidence: a conference report by Natassia Brenman
Every two years the Medical Anthropology at Home network organises a conference to present and discuss recent work. The ninth conference, held in June 2016 in Northern Norway, was organized by Mette Bech Risør from The Arctic University of Norway and Nina Nissen from the University of Southern Denmark. To address the theme of Configurations of diagnostic processes, practices and evidence, the conference placed diagnosis and diagnostic processes centre-stage — as classification and practices in-the-making, exploring a wide variety of actors, and organizational and discursive levels.
Thirty-two people presented papers in eight sessions broken up by two stirring keynote lectures, one delivered by Simon Cohn — from the London School of Hygiene and Tropical Medicine, UK — and the other by Annemarie Jutel — from the Victoria University of Wellington, NZ. The papers, grounded in rich ethnographic material, offered critical reflections on new developments and transformations of socio-medical realities in Europe, the United States, Canada and Brazil. As medical anthropologists critically engaging with diagnostic practices in our respective projects, we (Natassia Brenman and Anna Witeska-Młynarczyk) each presented papers and participated in the lively discussions that took place over the four days. In the following reflections, we seek to capture the key themes that emerged from the sessions, and to consider how the overarching aim of advancing anthropological debates on diagnosis was pursued throughout the conference.
Diagnosis as containment: an opening thought
Simon Cohn’s opening keynote reflected on how we, as medical anthropologists, might maintain a focus on local practices in a world where it is increasingly hard to represent single bounded locations. Drawing our attention to this struggle to preserve spatial distinctions, he argued that diagnostic practices are as much about ‘containing’ as they are about ‘identifying’. In a series of vignettes on non-communicable disease experiences, we saw how stretched and strained diagnostic categories are becoming: from a doctor’s confrontation with the unsettling relatedness of her patient’s Type II diabetes and clinical depression, to a patient’s perplexing task of dealing with multiple chronic conditions at once. The work of maintaining such eroding boundaries demands a constant splitting and re-defining of disease categories; something we were to see in many forms over the course of the conference. And so we were invited to think about how, paradoxically, current practices of ‘containment’ pose a challenge to the grand narrative of a single, universal classification system.
The diagnostic pronouncement in popular culture
In her keynote, Annemarie Jutel discussed the topic of a diagnosis as a speech act, a performative pronouncement of a physician vis-à-vis her/his patient. As she argued, the visual representations of a diagnosis taken from American pop culture evoked an aura of medical authority, a sense of inevitability of a medical verdict and its potential to irritate emotional worlds of the sick and their relatives. Yet, many ethnographic examples presented during this conference upset this image of a diagnostic pronouncement, demonstrating how diagnoses are settled in a relational negotiation in diverse clinical and non-clinical settings defined by particular styles of reasoning, organisational frameworks, normative and affective formations. Annemarie Jutel’s keynote served as an inspiring and thought-provoking reference for nuanced explorations of multifaceted diagnostic practices.
Chronicity and the layering of multiple conditions
The theme of suffering from various illness conditions, raised in the first keynote, proved to be pertinent to the work of several presenters. The ethnographic attention given to the bodily experiences of patients — often over long periods of time — demonstrated that illnesses rarely materialise as a series of singular entities. Lina Masana brought this to life in her work on the experiences of people living with chronic illness, attending to the ways in which people made sense of and (re)named their accumulating conditions. She highlighted the irony of experiencing multiple, unexplained symptoms, which in themselves foreclose any legitimate diagnosis, as well as the humour that comes with trying to capture hybrid or manifold conditions in personalised disease nicknames. Sylvie Fainzang’s case of the ‘deviant diagnosis’ also explored the emergence of a diagnosis out of chronic illness but this time as a (contested) response to a patient’s medication. Deviance, then, defines the diagnosis that fails to contain the disease in a medicalized framework. It is not just the passage of time that produces this kind of disruption of what might once have fitted into a singular diagnostic category. Camilla Hoffmann deployed the notion of ‘noisy bodies’ to acknowledge how, in a context of low social class and deprivation, it can be hard to differentiate the raft of bodily symptoms associated with physical and mental illnesses experienced in parallel.
Patient narratives and the ‘pushing back’ of conventional nosologies
Patient narratives such as those described above were always considered in relation (and at times in opposition) to those of healthcare professionals and the nosologies that guide their practice. The mutual dependency between patient narratives and the biomedical management of disease was made explicit when diagnoses are contested or withheld. Fainzang’s case study of a patient and his ‘lay’ diagnosis demonstrated how such a narrative can at once be accepted and rejected by medical authority when a doctor is disbelieving but feels too much is at stake to ignore the patient’s story. Alessandra Fiorencis used the experience of pelvic pain — often invisible and ambiguous in its pathological status — to illustrate how diagnoses are necessary to legitimate female pain in the Italian cultural context. However, delays in diagnosis keep women waiting for up to 12 years for such legitimisation. Shedding light on the historical context of how medical anthropologists and clinicians have come to understand such ‘lay’ and ‘culture bound’ experiences of health and illness, Josep Comelles deftly traversed medical texts from across Europe to illustrate how medical concerns have become the new folk medicine categories that push back against conventional nosology. But despite this new incarnation of ‘pushing back’, many of the papers that followed demonstrated how biomedicine continues to maintain and create new boundaries within its own nosology.
Capturing the ‘grey zones’ before and beyond illness categories
Where the focus of research lay with the biomedical gaze, we were shown how diagnostic boundaries are enacted in clinical settings. In these papers, and the discussions that ensued, it became clear that with such boundaries come spaces outside of, and between, the illnesses they seek to demarcate. These liminal, or to use Stefan Reinsch’s term, ‘grey zones’ were the focus of several papers. One such zone was defined temporally: the ever more important pre-diagnosis, or ‘at risk’ state, reminding us of what Robert Aronowitz (2009) calls “diagnosis creep”. Reinsch (co-authoring with Nicolas Henckes) observed the emergence of the ‘at risk mental state’ in French and German psychiatry, arguing that this process is made possible by scientific facts imbued with affect. Echoing how affect was shown to drive the maintenance of this fragile pre-diagnostic category, Rikke Sand Anderson captured the hope and fear that surrounds experiences of ‘not-yet cancer’: the newest addition to the cancer story in her field sites, which is emerging out of the Danish trend of inviting ever more bodily sensations into the cancer symptom ménage. Bernhard Hadolt also construed the generative role of affect and emotions within the field of ‘pre-symptomatic genetic testing’ through his close observations of genetic counselling. All three conjured the notion put forward by Timmermans and Buchbinder (2010) of “patients in waiting” in a world of screening and (self) monitoring for future illnesses.
While the above papers considered the temporal expansion of diagnostic boundaries to pre-diagnostic states, others presented a spatial expansion of diagnostic boundaries. As such, diagnostic work was seen to move the boundaries of illness categories into new, less medical territories: the classroom, the private world of a childless couple, and the grieving family. The expanding use of psychostimulants (usually prescribed for ADHD) to the ‘social sphere’ of educational settings was the focus of Johanne Collin’s paper, which highlighted the implications of medicating conditions with an uncertain diagnostic status. Anna Krawczak shed light on couples’ experiences of patienthood after being ‘diagnosed’ with infertility, and questioned whether childlessness coupled with sexual activity can, or should, be considered a medical condition. And drawing our attention to an experience not (yet) considered a diagnostic category, Ellen Kristvik told the stories of eight parents who had lost a child in stillbirth, arguing that medicalizing their grief would not address their needs. Here, it is perhaps worth turning our attention to the ‘needs’ of the biomedical and bureaucratic systems, which work so hard to seize these grey areas in order to improve precision and manage the uncertainty they bring.
The productivity of diagnostic uncertainty
The relevance of Renée Fox’s work on medical uncertainty (1980) endured in our discussion of diagnostic practice and what underlies it. Our focus, however, shifted from the nature of diagnostic uncertainty (the limits of physicians and of medical science itself) to what it might generate or produce. Stina Lou’s work with sonographers’ screening for Down’s syndrome revealed that much of their work was about doing the “best good” with highly ambiguous ultrasound images. These partial representations were often actively managed in order to produce trustworthy images and morally sound narratives. For Sylvie Fortin too, uncertainty was the starting point for her explorations of responses to children’s functional gastrointestinal disorders. The space this uncertainty gave for different narrativizations of pain meant that some non-migrants families in a Canadian cosmopolitan milieu were better ‘heard’ in clinical settings than their migrant counterparts, setting off divergent care pathways for their children. In the high-profile American memory clinic where Laurence Tessier carried out fieldwork, diagnostic uncertainty was not simply negotiated, but relished by the experts at work there. Such disquiet, or “worry”, provided the conditions for the feelings of connoisseurship, which she argued work side by side with contemporary neuroscientific knowledge in the production of diagnoses.
Diagnosis as an intersubjective enactment
By revisiting the Azande classics of Edward Evans-Prichard and George Foster’s dyadic concepts of naturalisation and personalisation, Sjaak van der Geest reminded us of a long-lasting interest of medical anthropologists in the intersubjective aspect of healing practices. Intersubjectivity emerged as a focusing lens used by several authors to reflect upon the social dynamics behind the medical processes, such as presentations that highlighted numerous contemporary developments reconfiguring the intersubjective experience of a diagnosis. Recent changes in social realities of patients imply, among others, their increasing participation in the decision-making process. Natasia Hamarat discussed the case in which the patient’s autonomy lies in the request for euthanasia. The intimate and captivating exchange between a patient who officially requested for a procedure and a doctor available for a consultation about the end-of-life options in a Belgian non-secular hospital revealed an emergence of a diagnosis understood as the “work of mutual elaboration of subjectivities” conditioned by different normative orders. The process of enactment was also central to Fredrik Nyman’s critical analysis of AIDS/HIV in “not so liberal” contemporary Sweden. In exploring what the syndrome is becoming, he highlighted a duality: how, on the one hand, advocates create a body with HIV as normal, and, on the other, prevention programmes engender an othering of this same body. Another portrayal of a diagnosis as a collaborative doing was given by Jane Roberts, who spoke about the Pediatric Bipolar Disorder (PBD) diagnosis in the United States. In a condition of unstable biomedical evidence concerning the PBD, parents conversant in biomedical knowledge present themselves as experts on their children’s behaviors and become a driving force in the making of a diagnosis. They help manage the uncertainties felt by the clinicians and hence stabilize the controversial diagnostic category. Another vignette of an intersubjective, extended beyond the clinic, collaborative ‘doing of a disease’ also concerned psychiatrization of contemporary childhoods. Anna Witeska-Młynarczyk demonstrated how an ADHD label authoritatively given to a child in a psychiatric office in Poland, turned into a contested label in a familial setting. The author talked about the fading power of the diagnostic pronouncement in the aftermath of the clinical encounter and the necessary involvements of one of the care-givers to keep it alive.
Another set of papers provided a ‘thick description’ of the present-day realities of health providers. As Annemarie Mol remarked, today’s doctoring means “tinkering with bodies, technologies and knowledge — and with people, too” (Mol 2008:12) in a world of “complex ambivalence and shifting tensions” (Mol, Moser, Pols 2010:14). The papers devoted to the contemporary practices of diagnosis from the doctors’ point of view contrasted with the diagnostic pronouncement represented in popular culture. The authors evidenced the fluidity and temporality of diagnostic practices and portrayed the unsteady aggregates of actors, bodies, bureaucracies, organisational solutions, technologies and systems of belief. Claudie Haxaire (with Carole Noumbissi-Nana and Philippe Bail) examined the ways in which general practitioners in western Brittany (France) care for their “psych-patients” who report signs of depression. In this account, the naming practice and a choice of remedies emerged from within a warm relationship developed with the long-term patients and a knowledge of their life circumstances. Rikke Aarhus, who followed ethnographically the standardized diagnostic cancer pathways in Denmark, attended to the ways in which the two trends — that of empowering the patients and the encroachment of the scientific bureaucratic medicine — complicated the clinical encounter by generating new affective spaces of decision-making. She meticulously portrayed the ways in which the doctor solves the resulting ambivalences. Torsten Risør added to the analysis of the diagnostic decision-making process yet another element — the logics of organization — to argue that historically developed local organizational solutions may also put serious constrains on decisions made by the doctors. From a dynamic picture of a young health-professional in a Danish hospital, we learned how proper care was enacted in an everyday struggle with the organisational constrains and professional hierarchies. Hubert Wierciński presented the Polish primary care doctors as annoyed “victims” of “bio-bureaucratization”, forced to accept the imposed bureaucratic standards. The author followed their acts of opposition hidden in minute practices meant to help patients (e.g. prescribing cheaper drugs coded for a different diagnostic category than the one the patient suffers from). Drawing on her personal experience of doctoring, Ana Lucia de Moura Pontes (co-authoring with Luiza Garnelo) reflected on the implications of being a representative of a hegemonic national project that brings standardized biomedical care to an indigenous population in Brazil. Having worked among the Baniwa ethnic group, she attested to the complexity of cultural forms of care and treatment available to the local population, giving an account of how a diagnosis is being born in this multifaceted terrain.
Uncertainties of age and self, and a desire to stabilise
A number of medical anthropologists conducting research at home turn their attention to previously unmedicalized sites, tracking the ways in which the biomedicalization of public health, through increased use of pharmaceuticals and diagnostic technologies, has impacted upon the performances of medical practice. David Armstrong pointed at pediatrics, psychiatry, basic medicine and geriatrics as those medical arenas in which a contemporary desire for stabilisation is voiced most clearly (1983). From the papers discussing psychiatrization of childhood we could see how the techniques of surveillance medicine used in pediatric psychiatry address the question of instability among others by offering anticipatory care. Three other papers presented novel ways in which old bodies and their social surroundings are managed and stabilised. Leila Jylhänkanga’s paper on the everyday experience of dementia in Finland revealed a process of transforming home into a place of care. The author showed how through minute practices the outside institutionalized forces, also in a form of a diagnosis, came into people’s intimate lives as new challenges. Marian Krawczyk conducted research in a Canadian hospital-based palliative care ward. She approached the longing for a “coherent dying process” by attending ethnographically to the “emotional labour” undertaken by palliative clinicians in order to facilitate a “good” death of their patients. These papers point to the anxiety around end-of-life care, with experiences of ambivalence and emotional unrest being common among patients and clinical providers alike (see also Natasia Hamarat).
The final set of papers served as a broad commentary on the contemporary reconfigurations in the field of “therapeutic culture”. Natassia Brenman’s paper followed the process of repositioning in mental healthcare. She explored the services in the voluntary and community sector of mental health in England, arguing for a growing relevance of new social contexts of care for the theory and practice in medical anthropology. In these decentralized sites diagnostic practice is not reproduced but appropriated anew in order to meet the service-users’ needs in given historical and political conditions. This raises questions about the ways in which a shifting politics of place will transform situated traditions of care, the practice of doctoring and the patients’ worlds. Other papers provided critical remarks on these questions, yet most of all they challenged the boundary between normalcy and madness as set by psychiatric categorizations. Three authors — Susanne Ådahl, Elisa Alegre Agís and Angel Martínez-Hernáez — represented the lived reality of mental illness as a bodily commentary on the social condition. Susanne Ådahl’s account of voice-hearing is a historically grounded reflection on the political process of contestation of a medical paradigm of schizophrenia understood as a single disease model. Elisa Alegre Agís offered an insightful look into a diagnosis of a severe mental disorder in Spain, highlighting a subjective hermeneutic labour performed by the female patients. These accounts illuminated various trajectories that the individual meaning-making processes may take depending on the social networks and resources available. Lastly, Angel Martínez-Hernáez created a moving portrayal of an anthropologist who listened and observed the ways in which madness was managed by the expert system and how it became frozen in nosological categories. This raises questions about the ways in which this type of otherness can be approached, and the social mechanisms explained through which people are moved into the “realm of the ob-scene”.
Shared by all presenters was a profound recognition of the on-going efforts by the actors involved in the multifaceted diagnostic processes and practices explored throughout the conference to tame the unruly and uncertain, which, after all, are inscribed not only into medical practice but into the human condition as such. Accordingly, we were repeatedly brought up close to the affective work of a multitude of actors (although an absence of auto-ethnography can be noted) both inside and outside clinical settings. This affective work was shown to be highly generative: from enabling the emergence or contestation of new conditions, to producing diagnostic knowledge and expertise, to stabilising that which is incoherent and disorderly. Perhaps this would be a useful point of departure for thinking about where this productivity is most powerful. Indeed, the lack of explicit discussion around power was a key concern raised in the closing reflections of the conference. We might ask: whose emotions hold generative power, and why? Why is it that in some cases, the enactment of new or pre-diagnostic conditions gains traction, whilst in others, contestations loaded with affect and emotion fail to engender change in the way disease experiences are understood and named? Finding a place for considerations of power, in amongst our sensitivity to dispersed networks of actors, and the complexities of affective practice, is one challenge we might set ourselves for future anthropological explorations of diagnosis.
Other new directions inspired by the conference papers may be to address issues of gender and social difference/inequality more specifically, illuminating contestations of diagnoses embedded in hierarchies of clinical practices, systems and social structures. An explicitly critical approach to diagnosis per se, its construction and rationale from within both biomedicine and non-conventional medicine, could be valuable in showing its intrinsic relationship with disease, evidence and experience. Following this, we challenge future research to develop methodologically and theoretically rich representations of multi-layered diagnostic processes, taking into account varied contexts of configurations, such as technology, organisation, discursive structures, and not least, multiple agents with different interests.
Armstrong, David. 1983. Political Anatomy of the Body. Medical Knowledge in Britain in 20th Century. Cambridge, Cambridge University press.
Aronowitz, R. A. 2009. “The Converged Experience of Risk and Disease.” The Milbank Quarterly 87(2): 417–442
Fox, Renée, C. 1980. “The evolution of medical uncertainty.” The Milbank Memorial Fund Quarterly. Health and Society 1–49.
Mol Annemarie., Ingunn Moser, and Jeanette Pols (eds.). 2010. Care in Practice: On Tinkering in Clinics, Homes and Farms. Bielefeld: transcript Verlag.
Mol, Annemarie. 2008. The Logic of Care. Health and the Problem of Patient Choice. London: Routledge.
Timmermans, Stefan., and Mara Buchbinder. 2010. “Patients-in-waiting: Living between sickness and Health in the Genomics era.” Journal of Health and Social Behavior 51: 408–423.
Natassia Brenman is a PhD student at the London School of Hygiene and Tropical Medicine, currently exploring issues around access to mental health care in the UK through an ethnographic project based in the voluntary sector. She has worked in a global health context as a research consortium collaborator for PRIME (Programme for Improving Mental Health Care), and her ongoing interest in psychiatric diagnosis stemmed from her master’s research in Medical Anthropology and Sociology, completed at the University of Amsterdam.
Anna Witeska-Młynarczyk received her PhD from the University College London. Her doctoral project was an ethnographic study on memory of communist time in Poland. Currently, she works at the Anthropology Departments at the University of Warsaw and at the Adam Mickiewicz University in Poland. She is also a part of the Childhood Studies Interdisciplinary Research Team. Her recent ethnographic project focuses on the experiences of Polish children in an early school age (6-13 years old) who were diagnosed with ADHD. Her interests lay at the intersection of medical anthropology, psychiatry, childhood studies.
Nina Nissen, PhD, is an associate professor at the Department of Public Health, University of Southern Denmark. Her research focuses on the diversity/diversification of medical knowledge and therapeutic practices, and the interplay between health care, gender (and other social differences), and personal and social change processes. Much of her research is carried out in interdisciplinary contexts. Her methodological interests include the creation of synergies between medical and visual anthropologies.
Mette Bech Risør is a professor in medical anthropology, at the General Practice Research Unit, UiT The Arctic University of Norway. Her research interests cover illness experiences, diagnostic processes, body-sensation-symptom relations and healthcare-seeking practices with a specific view to both medical and everyday life knowledge production. She has gained long-term experience in interdisciplinary research working with and in medical settings on e.g. contested illness, e-health and life after cancer.
NB and AW were joint lead authors; the conference report was jointly initiated by NN and MBR, who both supported and contributed to the writing. To reflect these different inputs, the two lead authors and the two co-authors are each listed in alphabetical order.
Here is our “In the Journals” roundup for October. In addition to a rich selection of abstracts, also of interest this month are a Special Issue of Osiris on the “History of Science and Emotions” and two recent articles by Fernando Vidal on brains in literature and cinema (linked below). Enjoy!
Even before the brain’s deterioration became a health problem of pandemic proportions, literature and film rehearsed the fiction of brain transplantations that would allow an aging person to inhabit a younger body, so that successive surgeries may result in that person’s immortality. Such fiction makes the brain operate like an immaterial soul that does not undergo physical decline. This article examines that fiction as elaborated in Hanif Kureishi’s The Body and several films in connection with older fantasies that articulate desire, eternal youth, and personal immortality, with philosophical discussions about brain and personhood, and with people’s assimilation of neuroscientific idioms into their views and practices of personal identity. In conclusion it discusses how, in contrast to philosophical approaches that tend to focus on self-consciousness, first-person perspectives, and individual autonomy, fiction may contribute to direct attention to relationality as constitutive of personhood.
Jean Shoveller, Sarah Viehbeck, Erica Di Ruggiero, Devon Greyson, Kim Thomson and Rodney Knight
Research that fulsomely characterizes context improves our understanding of the processes of implementation and the effectiveness of interventions to improve the health of populations and reduce health inequalities. Context could be a key aspect to understanding what population health interventions best address underlying conditions that contribute to systematic differences in health status at the population level. Here, we present a ‘snapshot’ of representations of context in population health intervention research published recently in some influential journals in the field of public health. In general, we found that context was treated as a ‘black box’, or as something that needs to be ‘controlled for’. Context also was used to help explain intervention ‘failure’. There were few in-depth descriptions of the hypothesized pathways or mechanisms through which context and intervention (in combination or separately) influence population health. Recognizing that research on population health interventions can be less straightforward than research conducted under more ‘controlled’ (i.e. de-contextualized) conditions, we suggest that there is a great need for new theoretical and methodological work in this area.
Sara Paparini and Tim Rhodes
The ‘cascade of care’ construct is increasingly used in public health to map the trajectory of local HIV epidemics and of different HIV populations. The notion of ‘patient engagement’ is key to the progress of people living with HIV through the various ‘steps’ of the cascade as currently conceptualised. The public health literature on the definition, measurement and interpretation of cascade of care frameworks is growing in parallel with critical social science literature analysing patient engagement through the lenses of ‘patient citizenship’ theories. In this paper, we review qualitative literature on HIV treatment, adherence to antiretroviral therapy and care engagement that draws upon the interlinked concepts of therapeutic and biological citizenship. We aim to offer a critique of the cascade of care construct using empirical data from research studies published since 2005 that were influenced by these two concepts. In so doing, the paper places public health literature on the cascade of care in dialogue with in-depth qualitative and ethnographic approaches, to unpack the understandings and processes shaping patient engagement in HIV treatment and care in different settings. The paper also examines the contributions and limitations of the concepts of biological and therapeutic citizenship as argued by a number of scholars here reviewed.
Treena Orchard, Kate Salters, Warren Michelow, Katherine Lepik, Alexis Palmer, and Robert Hogg
People with drug addictions have among the lowest rates of adherence to HIV medications (i.e. HAART) of any infected population, which is often explained through reference to the instability associated with problematic drug use and the ‘chaos’ that is assumed to characterize the lives of people with addictions. Many studies examine the links between addiction and adherence from the perspective of HIV-positive populations, but few explore how HIV care providers think about addictions, their impact on adherence, and how to incorporate the complex health needs of drug-using populations into comprehensive HIV care practices. Using qualitative data from a pilot study on adherence to HAART among people with drug addictions in Vancouver, British Columbia, this paper examines how eight HIV care providers (i.e. physicians, pharmacists, and community-based service providers) approach these interconnected issues. Our findings illustrate that while addictions often complicate adherence to HAART, this is not a universal reality, and the kinds of drugs used as well as the individual capacities of these patients also factor significantly in their adherence success. The organization of the HIV care environment, which is highly stratified and provides certain professionals with more resources and structural capabilities to deliver comprehensive care than others, also plays a large role in our participants’ abilities to address the health needs of their clients with addictions. We recommend that the current HIV care delivery system be adapted to ensure more integrated care and greater equity across the different groups of providers working in the field of HIV care.
Naomi Nichols, Micheal Fridman, Khaled Ramadan, Lee Ford Jones, and Niraj Mistry
This article reports findings from focus group conversations and in-depth interviews about the things that parents do to take care of their children’s health in Toronto, Canada. Our data demonstrate that within a single urban setting, parents are differently positioned to effectively find and engage existing healthcare resources. Parents’ ‘family health work’ is shaped by systemic expectations for health and institutional literacy and inter-institutional navigation skills that not all parents possess in equal measure. The intensive focus in Ontario paediatric healthcare settings on patient and parent education suggests increased interest in cultivating autonomous health information seeking and use strategies among parents. But the degree to which parents’ health-information seeking and use strategies are deemed effective depends on whether they are able to construct coherence between what they know about their child’s health and how to take care of it, and the knowledge the medical system requires to support diagnosis and treatment. Our research suggests that the healthcare system is only interested in information-seeking autonomy insofar as it supports patients’ engagement with the systems’ existing practices, frames of validity and service pathways. People who are unable to demonstrate health knowledge and work that support existing systemic processes cannot effectively use what they know and do to support their children’s health and wellness.
Allison A. Parsons, Katrina M. Walsemann, Sonya J. Jones, Herman Knopf, and Christine E. Blake
The medicalization of obesity encourages the structural and interpersonal regulation and monitoring of people who appear to be overweight or obese, with particular attention paid to low-income and minority populations; these dynamics serve to perpetuate contemporary social inequalities. The purpose of this study was to gain a better understanding of the perceptions of health and obesity among mostly Black parents and mostly White school personnel at a US elementary school serving low-income Black children, compare these perceptions to the dominant obesity discourse, and explore possible differences in child health narratives and obesity discourse based on race. In-depth qualitative interviews were conducted with 20 parents and 20 school personnel, which were part of a larger ethnographic study. Three main themes around dominant obesity discourse were identified from the in-depth interviews with parents and school personnel: (1) reflections of obesity discourse in child health narratives, (2) identifying ‘deviant others’, and (3) challenging obesity discourse. By engaging in dominant obesity discourse, school community members create an environment where children are taught possibly damaging ways to view their bodies and health. The findings from this study are evidence of the need for health messaging within the school environment that recognizes the complexities of child health.
Ola Söderström, Lilith Abrahamyan Empson, Zoé Codeluppi, Dag Söderström, Philipp S. Baumann, and Philippe Conus
Primarily on the basis of epidemiological studies, recent research in psychiatry has established a robust link between urban living and psychosis. This paper argues first, that an experienced-based approach, moving beyond epidemiology, is needed in order to enable more fine-grained understandings of the city/psychosis nexus. The second part of the paper presents preliminary fieldwork results based on video-elicitation sessions with first-episode patients with psychotic disorders. These results lead to the generation of a series of hypotheses for further research on the role of density, sensory overload and social interaction as factors in the onset of non-affective psychoses. The conclusion discusses the insights gained from viewing the city as an experiential milieu rather than as a set of substances. We argue that such insights enable, on the one hand, observation of the role of specific places and situations – and thus to unpack ‘the city’; and, on the other, to envisage the urban milieu as a nexus of possible sites of recovery.
Susan F. Murraya, Ramila Bishtb, and Emma Pitchforth
Plans for ‘medicities’, announced in the Indian press from 2007 onwards, were to provide large scale ‘one-stop-shops’ of super-speciality medical services supplemented by diagnostics, education, research facilities, and other aspects of healthcare and lifestyle consumption. Placing this phenomenon within the recent domestic and global political economy of health, we then draw on recent research literatures on place and health to offer an analysis of the narration of these new healthcare places given in promotional texts from press media, official documents and marketing materials. We consider the implications of such analytic undertakings for the understanding of the evolving landscapes of contemporary health care in middle-income countries, and end with some reflections on the tensions now appearing in the medicity model.
Grace Spencer, Anita Bundy, Shirley Wyver, Michelle Villeneuve, Paul Tranter, and Kassia Beetham
Recent theoretical debates highlight the competing risk logics and varying rationalities mobilised in response to dangers and approaches to risk management. Yet the concept of uncertainty, and how it informs perceived risks, is relatively less well understood. Debates of this kind are illuminated in contexts where risks are managed as part of everyday practice. The school setting provides an example of a context in which risks are continuously negotiated amidst dominant protectionist concerns about children’s well-being and safety. Such protectionist concerns are particularly pronounced for children with disabilities, as assumptions about limited capabilities complicate and structure the everyday play experiences for children. Drawing on findings from the Sydney Playground Project, in this article we aim to unpack the felt discomfort experienced by school staff in their responses to uncertain moments in children’s play. We report qualitative data collected from two schools between October 2014 and September 2015 using video observations of children’s play and teachers’ responses to an online Tolerance of Risk in Play Scale. Our findings point to the competing logics and forms of sense-making operationalised by teachers to manage the unknown. Our analysis explored the ways in which risk strategies were (re)framed by school staff and such reframing explained their action (or inaction) in the playground and how these were underpinned by concerns about professional accountabilities. Their responses located risks within the child with disabilities, rather than the play activity itself. Another approach to uncertainty can be achieved by mobilising a discourse of trust in which ‘letting-go’ offers children opportunities to reflexively engage in risk-taking.
Rusi Jaspal and Brigitte Nerlich
Post-exposure prophylaxis (PEP) is a biomedical approach to HIV prevention that is administered after a potential exposure to the virus. Although it was originally approved in the UK for occupational exposure to HIV among healthcare workers, PEP has remained a controversial method of preventing HIV infection following sexual exposure. To examine emerging social representations of PEP, we undertook a qualitative thematic analysis of 72 articles published in UK newspapers between 1997 and 2015. We focused on print media, as they still reflect broader societal debates, set the agenda for wider discussions in other media and contribute to shaping public perceptions and policy priorities. Our findings show that there were two major social representations of the use of PEP for HIV prevention amongst gay and bisexual men: a positive social representation of PEP as a relatively straightforward solution, where PEP is metaphorically framed as the ‘morning-after pill’, and a more negative social representation of PEP as posing risks and yielding uncertain outcomes. We also found a third social representation for the use of PEP amongst public health care workers, where PEP is represented as needed and deserved. The positive representation generally consisted of anecdotal statements, while the negative representation was substantiated by ‘expert’ and layperson voices, rendering the latter more akin to a hegemonic representation of PEP. We generally found a lack of technical information in all newspapers, and an information gap that might inhibit informed discussion and lead to entrenching polarised social representations and to the stigmatisation of some users of PEP.
Juanne N. Clarke
In this article, I examine the changing representation of medical error in high circulating North American popular magazines in three time periods 1980–1989, 1990–1999 and 2000–2014. Although there were stories of medical error in all the time periods they differed both in their frequency and in the dominant discourses. In the first decade, medical error was represented as an occasional, unique and unusual event. In the next two and a half decades and progressively over time, medical error was represented as commonplace in all parts of the health care system, at all stages of life and from pre-diagnosis to death. Readers are increasingly expected to take responsibility for managing the risk of such errors by continuous, assiduous monitoring of the possible dangers of mistakes made by doctors, in hospitals, in laboratories, that is everywhere in the medical care system. This changing representation of medical error can be linked to the changes in the health care associated with the medicalisation of everyday life, the implementation of neo-liberal ideology and the expansion of the risk society. The individualisation of citizens as isolated, separate units is a bedrock value and assumption of all three of these major discourses. Medicalisation is based on the assumption that health problems develop in the individual body and the individual should follow medical advice to prevent them and should seek medical treatment if such prevention fails. Neo-liberalism devalues the role of the state in ensuring social welfare, emphasising the importance of individual initiative and self-responsibility for health and well-being. In the risk society, the individual is responsible for identifying and managing the risks of everyday life.
In this article, I draw on data from a qualitative study of a group of bodybuilding youth in Poland to examine how these young men form a distinctive subculture in an environment of conflicting influences of a post-communist, lower class environment and those of capitalism, and social advancement. In the study, conducted in 2014 in a small town in north-east of Poland still dealing with aftermath of the collapse of communism, I undertook 26 in-depth interviews with young bodybuilders and, in this article, focus on five cases that highlight the group’s norms, activities, and overall functioning. In this article, I argue that bodybuilding was the foundation of a subcultural style, a means by which individuals could achieve peer respect and a method for them to channel emotions. I found that the activities associated with bodybuilding provided instant gratification. Such activities enabled individuals to see the immediate effect of working out. However, while these activities provided individuals with a way of developing a desirable sculpted body, they also resulted in distortions of self-image and their daily life, which, in turn, cause a deferral in engaging in typical mandated adult roles and, instead, focusing on the individual’s role and position in their group of peers. However, I found that the dynamics and norms of the bodybuilding group did not condone or facilitate, risky behaviours associated with the use of illegal pharmaceuticals that carry significant health risks.
Ellie Lee, Robbie M. Sutton, and Bonny L. Hartley
In this article, we follow the approach taken by Riesch and Spiegalhalter in “Careless pork costs lives’: Risk stories from science to press release to media’ published in this journal, and offer an assessment of one example of a ‘risk story’. Using content and thematic qualitative analysis, we consider how the findings of an article ‘Fetal Alcohol Exposure and IQ at Age 8: Evidence from a Population-Based Birth-Cohort Study’ were framed in the article itself, the associated press release, and the subsequent extensive media coverage. We contextualise this consideration of a risk story by discussing a body of work that critically engages with the development and global proliferation of efforts to advocate for alcohol abstinence to pregnant (and pre-pregnant) women. This work considers the ‘democratisation’ of risk, a term used to draw attention to the expansion of the definition of the problem of drinking in pregnancy to include any drinking and all women. We show here how this risk story contributed a new dimension to the democratisation of risk through claims that were made about uncertainty and certainty. A central argument we make concerns the contribution of the researchers themselves (not just lobby groups or journalists) to this outcome. We conclude that the democratisation of risk was advanced in this case not simply through journalists exaggerating and misrepresenting research findings, but that communication to the press and the initial interpretation of findings played their part. We suggest that this risk story raises concerns about the accuracy of reporting of research findings, and about the communication of unwarrantedly worrying messages to pregnant women about drinking alcohol.
While the majority of colonial public health officials in Africa intermittently used measures for mosquito containment, the government of French West Africa made the creation of what were called mosquito brigades into a vital element of urban sanitary policy. The project seemed to offer a chance to curb the impact of mosquito-borne disease on the colonial economy. Yet, despite the full support of sanitary policy on the federal, colonial, and local levels, the government found that conducting a “War on Mosquitoes” was far more difficult than they originally envisioned. The colonial government’s mosquito brigades were understaffed and often ran into resistance from both the African and European populations. Above all, the government’s urban mosquito control programs failed because their goal of controlling the breeding of mosquitoes lay beyond the limited capabilities of the both local government and the Federation’s health and sanitation services. This paper will examine the origins and fate of the French West African mosquito brigades and provide a context for analyzing their atypical place among colonial efforts at malaria prevention.
This article examines online exchanges of advice and knowledge among patients. It draws a distinction between explicit healthcare knowledge (i.e., facts about symptoms and treatments) and tacit healthcare knowledge (i.e., know-how about navigating the healthcare system). Based on analysis of message board interactions at a prominent online illness community, I find that patients routinely encourage one another to exercise agency strategically in clinical encounters by honing specific interactional skills. I isolate three major techniques that are advocated within the community (affect regulation, information management, and treatment persistence) and frame them as discrete examples of tacit healthcare knowledge. I argue that tacit healthcare knowledge constitutes a potentially potent source of empowerment for patients that can help them to receive their desired form of care from the health system and to negotiate relationships with medical professionals and institutions. I conclude by discussing how the concept of tacit healthcare knowledge further clarifies the wide variety of lay knowledge exchanged among patients online.
Commensuration – the comparison of entities according to a common quantitative metric – is a key process in efforts to rationalize medicine. The push toward evidence-based medicine and quantitative assessment has led to the proliferation of metrics in healthcare. While social scientific attention has revealed the effects of these metrics once institutionalized – on clinical practice, on medical expertise, on outcome assessment, on valuations of medical services, and on experiences of illness – less attention has been paid to the process of developing metrics. This article examines the attempt to create severity scales during the revision to the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) as a case of failed commensuration. Using data from interviews with participants in the DSM-5 revision (n = 30), I reconstruct the problems that emerged in the DSM-5 Task Force’s effort to develop viable psychometric instruments to measure severity. Framed as a part of a “paradigm shift” in psychiatry, the revision produced ad hoc, heterogeneous severity scales with divergent logics. I focus on two significant issues of metric construction in this case – diagnostic validity and clinical utility. Typically perceived as technical and conceptual challenges of design, I show how these issues were infused with, and undermined by, professional political dynamics, specifically tensions between medical researchers and clinicians. This case reveals that, despite its association with objectivity and transparency, commensuration encompasses more than identifying, operationalizing, and measuring an entity; it demands the negotiation of extra-scientific, non-empirical concerns that get written into medical metrics themselves.
Patricia Kingoria and René Gerretsb
Data fabrication, incorrect collection strategies and poor data management, are considered detrimental to high-quality scientific research. While poor data management have been occasionally excused, fabrication constitutes a cardinal sin – scientific misconduct. Scholarly examinations of fabrication usually seek to expose and capture its prevalence and, less frequently, its consequences and causes. Most accounts centre on high-income countries, individual senior researchers and scientists who are portrayed as irrational, immoral or deceptive.
We argue that such accounts contain limitations in overlooking data collected in ‘the field’, in low-income countries, by junior researchers and non-scientists. Furthermore, the processes and motivations for fabrication and subversive practices are under-examined. Drawing on two separate ethnographies, conducted in 2004–2009 in medical research projects in sub-Saharan Africa, this paper investigates fabrication among fieldworkers using data from observations and informal conversations, 68 interviews and 7 Focus Group Discussions involving diverse stakeholders. Based on an interpretative approach, we examined fieldworkers’ accounts that fabrications were motivated by irreconcilable moral concerns, faltering morale resulting from poor management, and inadequate institutional support. To fieldworkers, data fabrication constituted a ‘tool’ for managing their quotidian challenges. Fabrications ranged from active to passive acts, to subvert, resist and readdress tensions deriving from employment inequalities and challenging socio-economic conditions.
We show that geographical and hierarchical distance between high-ranking research actors and fieldworkers in contemporary configurations of international medical research can compartmentalise, and ultimately undermine, the relationships necessary to produce high-quality data. In focusing on fieldworkers, we argue for the inclusion of wide-ranging perspectives in examinations of data fabrication.
Stephanie L. Smith and Jeremy Shiffman
This study investigates a puzzle concerning global health priorities—why do comparable issues receive differential levels of attention and resources? It considers maternal and neonatal mortality, two high-burden issues that pertain to groups at risk at birth and whose lives could be saved with effective intrapartum care. Why did maternal survival gain status as a global health priority earlier and to a greater degree than newborn survival? Higher mortality and morbidity burdens among newborns and the cost-effectiveness of interventions would seem to predict that issue’s earlier and higher prioritization. Yet maternal survival emerged as a priority two decades earlier and had attracted considerably more attention and resources by the close of the Millennium Development Goals era. This study uses replicative process-tracing case studies to examine the emergence and growth of political priority for these two issues, probing reasons for unexpected variance. The study finds that maternal survival’s grounding as a social justice issue spurred growth of a strong and diverse advocacy network and aligned the issue with powerful international norms (e.g. expectations to advance women’s rights and the Millennium Development Goals), drawing attention and resources to the issue over three decades. Newborn survival’s disadvantage stems from its long status as an issue falling under the umbrellas of maternal and child survival but not fully adopted by these networks, and with limited appeal as a public health issue advanced by a small and technically focused network; network expansion and alignment with child survival norms have improved the issue’s status in the past few years.
Sarah L. Bella, Jessica Tyrrella, and Cassandra Phoenix
People’s lived experiences of chronic illness have garnered increasing research interest over the last 30–40 years, with studies recognising the disruptive influence of illness onset and progression, both to people’s everyday lives and to their biographical selves. We extend this body of work, drawing on the experiences of people living with Ménière’s disease; a long-term progressive vestibular disorder characterised by unpredictable episodes of debilitating vertigo, tinnitus and permanent sensorineural hearing loss. In response to calls for more critical examination of the wider biographical contexts in which chronic illnesses are encountered, we draw on 28 in-depth narrative interviews with Ménière’s patients and their family members to discuss how personal chronic illness experiences may be closely entwined with, and deeply shaped by, the life transitions (illness-related and otherwise) of ‘linked others’. Interviews were conducted in south west England from January to June 2015. Focusing on intersecting transitions of parenthood, caregiving and retirement, we explore how and why familial relationships can both facilitate and hinder adaptation to a lifetime of chronically disrupted normalities, contributing to fluctuating experiences of ‘cherished time’, ‘anomalous time’ and ‘turbulent time’. In so doing, we suggest that the onset and progression of chronic illness could usefully be re-conceptualised as one of many ‘biographical oscillations’ encountered during the life course that serve to re-route us between continually shifting life trajectories. In recognising life’s dynamism and challenging the identity-limiting and self-damaging nature of entrenched cultural life course constructions, we suggest value in recognising alternative ways of ‘living well’ when negotiating the wide-ranging biographical maps that life can follow.
Andrea E. Bombaka, Deborah McPhailb, and Pamela Ward
Amidst a barrage of policy documents, bio-medical research, and press items concerned with the “crisis” of obesity, a growing scholarship is concerned with what has come to be known as “obesity stigma.” This scholarship hails from a range of sources including critical obesity scholars who problematize the idea of obesity as a health concern, as well as from “mainstream” organizations and researchers who, while maintaining obesity is a world-wide health problem, also argue that “obese” people are the targets of discrimination. In this paper, we analyze both interpretations of obesity stigma, particularly as that stigma applies to obese women’s experiences of accessing and receiving reproductive care. We describe a qualitative study conducted with 24 overweight and obese women in 2 Canadian cities. Participants related overt and covert experiences of stigma when accessing reproductive care founded in healthcare practitioners’ focus on fetal risk and “mother-blame” which, though partially evidence-based, was interpreted by participants as discriminatory. As such, we maintain that any true interruption of obesity stigma in the reproductive healthcare interaction requires a bridge between critical and mainstream scholarship, and careful attention to the risk-based foci in clinical settings which can be interpreted by clients as moralizing.
Amy Kalera, Nicole Angottib, and Astha Ramaiya
Research on the social impact of ART pivots on questions of individual adherence and community acceptability of treatment programmes. In this paper we examine unexpected and unintended consequences of the scale-up of treatment in rural Malawi, using a unique dataset of more than 150 observational journals from three sites, spanning 2010 to 2013, focusing on men’s everyday conversations. Through thematic content analysis, we explore the emerging perception that the widespread availability of ART constitutes a form of social danger, as treatment makes it difficult to tell who does or does not have AIDS. This ambiguity introduced through ART is interpreted as putting individuals at risk, because it is no longer possible to tell who might be infected – indeed, the sick now look healthier and “plumper” than the well. This ambivalence over the social impact of ART co-exists with individual demand for and appreciation of the benefits of treatment.
Joan H Robinson
This paper explores the settlement process of one of the most common home diagnostic tools currently in use, the home pregnancy test. The controversial new device appeared to threaten the jurisdiction of both doctors and Food and Drug Administration regulations, while it aligned with the women’s health movement’s goals. But this study finds a more nuanced narrative: one of boundaries and positions that at once were blurry, later shifted, and were ultimately aligned without compromising the credibility of doctors or the legal system. To understand this process, the roles of court decisions and regulations are explained by stages of juris-technical accordance. In this case, rather than restricting technological innovation, legal innovation provided pathways for widespread acceptance of the home pregnancy test by various groups. As more tools move from expert users to layperson users, this paper demonstrates the utility of examining existing juris-technical assemblages as we consider the future of self-monitoring and self-diagnosis.
Research on autism and environmental risk factors has expanded substantially in recent years. My analysis draws attention to the regimes of perceptibility that shape how the environment is materialized in post-genomic science. I focus on how more complex narratives of autism’s causes and social anxieties surrounding child development have helped situate autism risk in women’s bodies before and during pregnancy. This has resulted in what I call the maternal body as environment in autism science. I show that this figure involves three characteristics: the molecularization of the environment, an individualization of risk, and the internalization of responsibility. I argue that these three features point to a new spatial and temporal politics of risk and responsibility that may heighten social and medical surveillance of women’s bodies and decisions, eclipsing larger questions about the uneven distribution of exposures in society and more holistic understandings of health that include neurodiversity. I conclude by considering what the maternal body as environment signals for women, social justice, and the politics of environmental health in the post-genomic era.
Nature Culture Now!, an upper division anthropology lecture course at the University of Michigan, traces the trajectory of nature/culture debates in American anthropology through modules on race, sex, and health and disease. The course is co-taught by a biological anthropologist, and myself, a cultural/medical anthropologist. The impetus for Nature/Culture Now! came from a formative experience I had as an undergraduate anthropology major at UC Berkeley in the early 1990s. One of the major course requirements was the blandly titled “Current Issues in Anthropological Thought”. Nancy Scheper-Hughes, a cultural and critical medical anthropologist, and Vince Sarich, a biological anthropologist, co-taught “Current Issues” the semester I enrolled. Both professors relished intellectual combat and battled the whole semester about the cultural construction versus the biological essentialness of topics ranging from race, mother love, intelligence and schizophrenia. The arguments were fierce; students took sides and the stakes were extremely high. I learned a tremendous amount watching and participating in these heated and often extremely painful debates.
Almost twenty years later, I wanted to develop a similar course that incorporated recent shifts in theories of nature/culture, building on the four fields strength of the anthropology department at the University of Michigan, especially the dynamism of the biological anthropology subfield. At least from my vantage point as a critical medical anthropologist of the life sciences, cultural constructionism and biological essentialism were no longer useful distinctions for knowing the world, except in tracing how thoroughly the divide continues to shape how we ask questions. Instead, cultural and medical anthropologists, using a situated and constructionist (not cultural constructionist) approaches tend to work to document how historically contingent biological processes are very much part of what shapes lived, expressive worlds, and biological anthropologists, deploying approaches like epigenetics and evolutionary developmental biology, are increasingly focused on how bodies are shaped within particular histories and environments. Nature/Culture Now! is designed around these current approaches, and as we guide students through the course, perhaps the key take away is that biological processes are real, and also constructed.
So far Nature/Culture Now! has gone through three iterations. I have taught it twice with Abigail Bigham, whose research investigates human genetic adaptation to environmental pressures, and once with Jacinta Beehner who investigates sexual conflict among primates through a comparative lens. While we don’t engage in pitched battle, part of the course’s success has come from class-wide debates built into the end of each course module. Throughout these debates we do in fact argue about how what counts as knowledge production for cultural and biological anthropologists, is in fact different, which in turn produces different accounts of the world. Students say these debates are invaluable because they have never before seen faculty members describe the underpinnings of knowledge production in regards to race, sex and disease, all issues that they care about deeply.
I assume everyone is, like me, tired of (and stressed out about) the US election, so let’s take a break from that to take a quick look around at some interesting recent public health stories.
According to data released last month by the Institute for Health Metrics and Evaluation at the University of Washington, the maternal mortality rate in the US is rising, “defying global trends.” In a related article, Newsweek has a long piece on the ways that racism disproportionately disadvantages women of color in terms of maternal health care, exposing them to riskier pregnancies and deliveries; “even when controlling for age, socioeconomic status and education, the U.S. Centers for Disease Control and Prevention (CDC) reports that African-American women…face a nearly four times higher risk of death from pregnancy complications than white women.”
New research published in Radiology shows that playing football can affect the brains of children as young as 8. And, CMV Is a Greater Threat to Infants Than Zika, but Far Less Often Discussed.
Many of you perhaps heard about the fact that Médecins Sans Frontières this month turned down a donation of one million Prevnar13 vaccines from Pfizer. Prevnar13 is a vaccine which protects against a particular bacteria that causes pneumonia, the leading cause of death of children under 5 (1.4 million deaths per year), and is recommended for all infants. Pfizer makes USD 6.245 billion in revenue per year from this drug alone, but it is too expensive for MSF to purchase regularly. This article in The Atlantic details the problems with donations of this kind, the reasons for which MSF turned it down, and the opacity of vaccine prices on the global market.
Paul Farmer was interviewed by NPR’s Goats and Soda blog on the aftermath of the Hurricane Matthew in Haiti; he discusses the status of aid in the country, in what ways the hurricane is different from/worse than the 2010 earthquake, and the role of “resilience”: “I heard last week, well, the Haitians are resilient. That 12-year-old boy seemed bright and resilient but he needed to be on a breathing machine to survive. In Sierra Leone during Ebola, I knew three doctors and two were dead of Ebola by November and, let me tell you, they were plenty resilient. That’s why I worry about the term ‘resilient.’ Resilience is not the same as survival.”
This is an interesting story about a doctor in Lynn, Massachusetts who was diagnosed with an active Tuberculosis infection, the public health response that followed, and the state of TB resources in the US.
Anthropologist Wendy Orent published a piece in Aeon about the Black Death and the controversies surrounding its causes, which she claims were the combination of four “dark stars,” namely “germ, host, Empire, and flea.”
A project in India called WHP-Sky aiming to set up kiosks in rural places where patients can consult electronically with a doctor has garnered accolades and millions of dollars in funding (including USD 23 million from the Gates Foundation); however, an evaluation study has shown the program to have been largely ineffective, both in reaching people in the first place, and in providing better care than the uncertified medical workers to whom people in rural areas usually turn for care.
A trial of an apparently-effective birth control shot for men was cut short because of side effects, including mood disorders and depression which, as many women have since pointed out, have been part and parcel of female hormonal contraception since its invention.
A review in The Guardian of a new graphic book co-authored by a French psychiatrist and an illustrator called The Story of Sex: From Apes to Robots.
And, a few more non-public health bits:
An investigation by ProPublica revealed that Facebook allows advertisers to target users of certain “Ethnic Affinities” (which Facebook claims is not the same as race) while excluding others from seeing their ads. In the course of this investigation, ProPublica bought an ad in Facebook’s housing section, and “when [they] showed Facebook’s racial exclusion options to a prominent civil rights lawyer John Relman, he gasped and said, ‘This is horrifying. This is massively illegal. This is about as blatant a violation of the federal Fair Housing Act as one can find.’ ” In other Facebook news, Pacific Standard has a piece about how Zuckerberg and Chan’s pledge of USD 3 billion to control “all diseases” won’t work: Facebook Can’t Rescue Our Underfunded Science.
One of my favorite authors, Amitav Ghosh, wrote a piece in the Guardian about why climate change is absent from modern realist fiction writing. “Here, then, is the irony of the ‘realist’ novel: the very gestures with which it conjures up reality are actually a concealment of the real.”
And, the Ross Sea in Antarctica is now a protected area, making it the world’s largest marine reserve at nearly 600,000 square miles.
The Atlantic’s Future of Work Summit was this past week in Chicago.
Anthropologists like to tell their stories of ‘entering the field,’ whether they are left alone on a tropical beach as their dinghy sails away (Malinowski 1922) or run away from the police into a local’s courtyard (Geertz 1973). These stories are often told to show us, their readers, the distance anthropologists must travel from their own worlds into those of their research subjects. If stories traditionally fall within the thriller or adventure genres, my own is rather more Kafkaesque. And much like the stories from The Trial and The Castle, it is more about the system in which my interlocutors and I live than our own personal stories.
It took me more than six months to get my research with Palestinian physicians approved in two large Israeli hospitals. In a third hospital my access was denied. My ‘entry story’ is thus about my repeated attempts to obtain the approval of three Helsinki Committees (HCs, Israeli hospitals’ research ethics committees) to conduct ethnographic research with Palestinian physicians in Israeli public hospitals. While my research was eventually approved in two of these institutions, correspondence with HC representatives, as well as evidence of their informal moves with institutions’ management, reflect their perceptions of the risk my study posed.
I had already passed the University of North Carolina’s meticulous ethical approval process, and so the very different response of Israeli committees left me bewildered. Had the UNC’s committee overlooked important risks? In fact, the discrepancies between these committees calls into question the very idea of a universal ethical code of research conduct, as the 1964 Declaration of Helsinki aimed to establish. This post-World War II cornerstone declaration was meant to set ethical standards for human experimentation. It has since undergone seven revisions but remains a universal guideline for research ethics. The worldwide emergence of Institutional Review Boards (IRBs) is a result of the 1975 Helsinki Declaration II affirmed in Tokyo[i].
But pointing, once again, to the non-universality of self-proclaimed universal values (cf. Heimer and Petty 2010) is not what is interesting about this story. It is the specificity of local ethical standards, enforced by local commissars who draw on the idea of the universal, to promote local political agendas. In Israel, the Helsinki Declaration’s ethical standards became legally instantiated in the 1980 Takanot Briut Ha’am – the People’s (or Nation’s) Health Regulations. Traveling from Finland to Japan to Israel, research ethics thus turned from a human issue into a national concern. The informal and formal feedback I received on my research topic, as well as the numerous revisions the Israeli committees required to approve my research proposal, show that it was not the safety of research subjects that was at stake for the Israeli HCs. It was the integrity of the ideals of medical neutrality and Jewish ethnocracy.
Consider the following short anecdotes from my experiences in the three institutions:
After six months of submissions and resubmissions of my research proposal to Hospital X’s HC, I was desperate and ready to rethink my whole dissertation project. I called the secretary on the phone. Maybe she noticed my dismayed tone and felt sorry for me; perhaps she just could not bring herself to process my resubmissions endlessly. This is how the phone conversation went:
Secretary: Do you remember that we changed the title so it will be Arab physicians and not Palestinian physicians?
S: So… that word is still there… many times in the research protocol…
G: What do you mean that word?
S: You know… just make sure your research proposal stays in line with the new title…
I then used the word processor’s ‘find and replace’ function to replace all references to ‘Palestinians’ with ‘Arabs,’ quite literally erasing my interlocutors’ national identity.
It was less than two weeks later that I received the long-awaited approval.
I was sitting in the chief physician’s office, hoping to get my research approved on his ward. On Professor H’s office wall hung a ‘thank you’ plaque given to him for his military service in the occupied Gaza Strip. The hospital’s deputy CEO was the one who recommended that I do my research in Professor H’s ward. The question of my military service in the IDF was an issue of concern in my earlier meeting with the deputy CEO and once again with Professor H. They both had long military careers, and were suspicious about the national loyalty of an anthropologist coming to study Palestinian physicians. Social scientists have a reputation of being ‘lefties’ and this was a test I clearly had to pass before I was granted access.
After the ritualized brief exchange about the timing, location, and nature of military service by which Israeli men size each other up, the chief physician wanted to know more about my research. I told him that I am interested in the experience of Arab physicians in the Israeli public health system. He immediately shared some anecdotes and amateurish social analysis about “our cousins” (Bnei Dodenu, “euphemism” for Arabs). The conversation was very open and friendly. He then said that he approves of my request to conduct research in this department; I will only need the “Helsinki approval.” He then called the head of the hospital’s Helsinki Committee:
“Hi, how are you? I have here a PhD student who wants to conduct research on minorities…” (Bnei Miutim, yet another “euphemism” for Arabs).
His friendly face immediately became serious and worrisome.
“I see… well he is right here… I’ll ask him straight to his face …”
He hung up and said: “The person who heads the Helsinki Committee… well… he is a religious person… but also very experienced… I don’t have a problem telling you what he said… well… he said: ‘Read my lips [in English] – nothing good is going to come out of this! If you ask me… don’t do it. They’ll just say that we are racists. And if they find that we aren’t, then they’ll not publish it.’”
I faced six months of politically whitewashing “revisions” before successfully meeting with Hospital Y’s HC approval.
At first, entering the field in Hospital Z was the smoothest of all. I interviewed a few physicians from the hospital and found Professor A, the chief physician of the ward I chose as the site for participant observation, to be friendly and welcoming. He approved my research and even appointed a research administrator to help with my Helsinki application to expedite the process.
I then received an email, notifying me that the HC finds my proposed research “not included in the committee’s jurisdiction” and that if I wish to proceed with my study, I will have to get “the management’s approval.” Trying to probe with the HC chair what sort of approval it was that I needed to obtain, and what, precisely, was the managerial unit that could grant it, I was rebuffed rather rudely, and referred to the chief physician who sponsored my research for answers. Quite disappointed and upset, I contacted Professor A, recalling his friendly attitude to my project. This time, he responded with a very short and cutting message, stating that he “will not be able to handle this project” and referring me to Professor R, the hospital’s deputy CEO, whom he also copied on the message. More than a year after this correspondence, I ran into Professor A at a conference. I asked him about these events and he said that the HC contacted the executive management “over his head” and that it was taken “out of his hands.”
But most telling was the communication with Professor R that followed. In his first response to my request to conduct the research in the hospital he said: “We have only 13 Palestinian physicians (all from the West Bank) and to the best of my knowledge they are outstandingly integrated.” At length, I explained that my research is with Palestinian citizens, what he would call “Israeli Arabs,[ii]” and that there are hundreds of them employed in the hospital. To that he interestingly replied “we treat all our Israeli citizen physicians as totally equal without regard to their religion” – as if being Palestinian is a religion. After further explanations on my part, he wrote: “I have to admit that I have a principled disagreement with the definitions in your research proposal. According to my world view, physicians with Israeli citizenship, from the Arab nation, of any religion, are Israeli physicians for all purposes.” He continued: “I will share this dilemma with senior members of management here in hospital Z and will get back to you.” The following day, it seems that “the dilemma” was solved and he wrote “after consultations with a number of management members we prefer that the research not be conducted in hospital Z.” He later agreed to meet me but in that meeting he stood fast in his opinion, saying: “I am proud to be blind in these matters and see everyone as equal Israelis.”
Protecting the (Jewish) Nation’s Health
Palestinian citizens of Israel, approximately one fifth of Israel’s population of eight million, are an ethnic and national minority within the “Jewish State,” but also part of yet another national body, the Palestinian people struggling for their own independent state – in the West Bank under Israeli occupation, in the besieged Gaza Strip, and in the diaspora. These communities that remained under Israel’s rule following the Israeli independence and the Palestinian Nakba (catastrophe) of 1948 were put first under military rule and have since been treated as second class citizens, holding what has been termed a “hollow citizenship,” devoid of national-cultural recognition (Jamal 2007). Palestinian citizens’ marginality in Israeli political, economic and social reality is the outcome of processes of Judaization which has turned the Israeli state, under a democratic façade, into a Jewish ethnocracy (Yiftachel 2006). While Palestinian citizens struggle for equal civil rights as Israeli citizens, they see themselves as Palestinian nationals. This stance, in the context of a prolonged bloody national conflict, is often viewed by Jewish Israeli hegemony as straightforward treachery (Kimmerling and Migdal 2003).
Nevertheless, asserting Palestinian national identity has become more prevalent among Palestinian citizens in the past decades (Rabinowitz and Abu-Baker 2005). In the recent 2015 national elections, a vast majority (more than 80%)[iii] of Palestinian citizens voted for the non-Zionist, outspokenly Palestinian Joint List, gaining some 11% of the seats and becoming the third largest party in the Israeli Parliament. Hence, there was yet another source of anxiety that made these administrators and ethics committee censors find my research ‘risky.’ That is the risk it posed to ideals of political neutrality within the medical sphere.
While educational, residential and occupational segregation draw physical as well as social boundaries between Palestinian and Jewish citizens of Israel (Khattab and Miaari 2013), with Palestinian citizens comprising about 12% of physicians working in Israel (Reznik 2011), the country’s public health system is one of the few arenas in which Arab and Jewish citizens work side-by-side. Many Palestinians and Israelis frequently depict Israel’s predominantly public healthcare system as a “world unto itself, transcending the two worlds” (Abuelaish 2011:91). Anthropologist Dan Rabinowitz (1997:137) asserts that “where personal wellbeing is at stake, distrust of Palestinians’ intentions is subordinated to the basic faith in the professional integrity of physicians, whatever their national affiliation.” Such views render the health sphere as an exceptional space of professional integration and opportunity for Palestinians (Reznik 2011). This allegedly successful integration is often presented as evidence of the potential for coexistence, as the late Israeli president Shimon Peres noted: “Given all the discomfort that could arise among Jews due to having an Arab doctor, it’s noteworthy that it has succeeded. And if this happens with people who are ill, why not when they’re healthy?”
Making the case for a neutral medical sphere is a staple of Jewish-Israeli hegemony, and in particular, for health administrators and professionals (Shalev 2016). Although overt expressions of ethnic hostility are rare in medical settings, Palestinian doctors frequently encounter assertions of difference, social exclusion and tacit hostility by Jewish patients and professionals that challenge the frail façade of political neutrality.
Most Palestinian physicians I have been talking to during fieldwork make it clear that talking about national politics in the hospital or clinic is not recommended and they make a great effort to avoid such discussions. Many of them acknowledge the fact that, as Palestinians, their politics are just too radical for mainstream Jewish-Israelis and best be kept private, lest personal conflicts erupt. In these contexts, the basic stance of not being a Zionist is enough for one to be considered a radical and for some, even an extremist. Thus, Palestinians who cannot accept the Zionist core principle of Israel as a Jewish state (therefore accepting their own status as second class citizens), are immediately considered as holding illegitimate political positions. Like other public spaces in Israel (and in somewhat contrast to US public spaces), the health sphere is very much an appropriate setting for political discussions, debates and sometimes even heated arguments. But only among Jews. As one physician told me in an interview: “sometimes I join [my colleagues’] table in the cafeteria and there is silence. I know they were talking about politics. But that’s fine with me.”
The sort of medical neutrality that is manifested in the Israeli health system is thus, in a sense, ‘selective neutrality.’ It is an ideal selectively enforced on Palestinians, acting to neutralize their national belonging and political dissent. Facing my proposal to do research with Palestinian physicians in the hospital, HCs were confronted with a double risk: acknowledging Palestinian nationalism and breaching their institution’s political neutrality, which they consider very real and pragmatically crucial. None of these risks was, however, posed to the research subjects whose wellbeing they are appointed to protect. While HCs cannot deny research altogether, but request revisions and resubmissions, the committees in hospitals X and Y were using everything in their power to postpone and, one might guess, dissuade me from conducting it in their institutions. Hospital Z’s HC, however, made the extra effort of directly involving the institutions’ executive management, getting it to explicitly deny my access.
Thus, a secretary’s suggestion that I erase the “P word,” a professor’s rich use of “euphemisms” referring to Palestinians as “cousins” or “minorities,” and a senior manager’s ‘voluntary blindness’ are all practices of national erasure, assertions that only one national identity is possible within the Israeli state. But being Palestinian in the hospital is considered a double offense. It risks the hegemony of Jewish nationalism and contaminates the allegedly neutral, politically sterilized medical sphere. While HCs’ mandate is to monitor and enforce ethical standards in research with human subjects, all three committees were practicing political gatekeeping. Through endless requests for revisions, an insistent warning to a professor colleague that “nothing good is going to come out of this,” the outright overriding of a chief physician’s authority and having the research refused by the institution’s senior management, HCs acted as political censors. Ostensibly mechanisms for the protection of human rights, these committees are embedded in local social hierarchies and power struggles. More importantly, when ethics committees practice such erasure and political gatekeeping, they not only limit academic inquiry but also redefine, in political terms, the realm of the moral. In practice, this amounts to defining counter-hegemonic narratives as ‘unethical.’ In this sense, they are, quite literally, fulfilling the Israeli state’s interpretation of the Helsinki declaration, and its local aim to protect the (Jewish) nation’s health.
Guy Shalev is a PhD candidate at The University of North Carolina at Chapel Hill. His research with Palestinian physicians in the Israeli public health system was funded by the NSF (#BCS-1424100). Guy’s dissertation examines how ideals of ‘medical neutrality’ (re)produce social hierarchies and exclusion, but also how they serve as a ground for social mobility and political action for Palestinian citizens of Israel. His article A Doctor’s Testimony: Medical Neutrality and the Visibility of Palestinian Grievances in Jewish-Israeli Publics was recently published in Culture, Medicine, and Psychiatry.
Abuelaish, Izzeldin. 2011. I Shall Not Hate: A Gaza Doctor’s Journey on the Road to Peace and Human Dignity. New York: Walker and Company.
Geertz, Clifford. 1973. The Interpretation of Cultures: Selected Essays. Basic Books.
Heimer, Carol A., and JuLeigh Petty. 2010. Bureaucratic Ethics: IRBs and the Legal Regulation of Human Subjects Research. Annual Review of Law and Social Science 6: 601-626.
Jamal, Amal. 2007. Nationalizing States and the Constitution of ‘Hollow Citizenship’: Israel and its Palestinian Citizens. Ethnopolitics 6.4: 471-493
Khattab, Nabil, and Sami Miaari, eds. 2013. Palestinians in the Israeli Labor Market: A Multi-Disciplinary Approach. Palgrave Macmillan.
Kimmerling, Baruch S., and Joel Samuel Migdal. 2003. The Palestinian People: A History. Harvard University Press.
Malinowski, Bronislaw. 2002 . Argonauts of the Western Pacific: An Account of Native Enterprise and Adventure in the Archipelagoes of Melanesian New Guinea. Routledge.
Rabinowitz, Dan. 1997. Overlooking Nazareth: The Ethnography of Exclusion in Galilee. Cambridge University Press.
Rabinowitz, Dan, and Khawla Abu-Baker. 2005. Coffins on our Shoulders: The Experience of the Palestinian Citizens of Israel. Berkeley: University of California Press.
Reznik, Ran. 2011. The Integration of Arab Citizens of Israel in the Health System. The Abraham Fund Initiatives, Accessed October 19, 2016.
Shalev, Guy. 2016. A Doctor’s Testimony: Medical Neutrality and the Visibility of Palestinian Grievances in Jewish-Israeli Publics. Culture, Medicine, and Psychiatry 40.2: 242-262.
Yiftachel, Oren. 2006. Ethnocracy: Land and Identity Politics in Israel/Palestine. University of Pennsylvania Press.
[i] In the US it was the infamous Tuskegee Syphilis Study (1932–1972) on black rural communities in Alabama that brought about the National Research Act, which set federal regulation of human subjects research.
[ii] See Rabinowitz and Abu-Baker 2005:43-44 for more about the politics of this terminology.
Editor’s note: We asked several scholars which readings they would recommend to students or colleagues interested in familiarizing themselves with the anthropology of ethics and morality. This is response we received from Webb Keane, George Herbert Mead Collegiate Professor of Anthropology at the University of Michigan. Reading lists from other scholars will be forthcoming in this series.
The anthropology of ethics and morality is as old or as new as you’d like to make it. After all, ethics and morality were motivating questions from the very start of the discipline, evident for instance in Tylor’s call for a reformer’s science, Durkheim’s worries about anomie, Weber’s account of the Protestant ethic, Benedict’s patterns of culture, and Mauss’s total social fact. Looking at the field from this angle, one might be tempted to echo the dry remark with which one of my teachers used to greet any new and exciting idea: “But that has been known since Aristotle.” To overemphasize continuity, however, can blind us to emergent possibilities; we shouldn’t let genealogy blind us to the freshness and specificity of what we can call “the ethical turn.” So why an ethical turn now? Here are two factors, among others. First, after a generation, the turn to power critique in anthropology, important though it has been, seems to have reached a certain limit. Once “power” (or, say, “neo-liberalism”) became the answer to all questions, it started to lose both its explanatory and critical force. The turn to ethics opens up new ways of looking at political commitment. If politics is not always a struggle for survival or domination, then what is it about? Much politics involves conflict about harm suffered by others or fighting for ideals that go beyond one’s own well-being. If you yourself have not suffered harm, why should you be concerned to the harm that others suffer? To answer “the political” risks circularity; ethics seems to offer one way out. It brings into view the pervasively evaluative dimension of human actions, to the extent that it is not shaped by instrumental reason and utilitarian goals alone. The second factor is, in a sense, a variation on the first. It’s apparent, for instance, in the later writings of Foucault. Pushing back against the portrayal of “power/knowledge” in totalizing, deterministic, and constraining terms, the turn to ethics provides a way to bring into focus the productive dimensions of power. For some (but not all) participants in the ethical turn, this focus militates against any assumption that ethical worlds are, or even could be, self-consistent and coherent systems of the sort familiar in the older anthropological traditions I invoked above.
Two definitional problems immediately present themselves. The first, and one of the sources of dispute within the ethical turn, concerns the boundedness of the field. Some of our authors worry that the definition of ethics threatens to expand to the point that it encompasses everything. If ethics is everywhere, then, goes the criticism, the concept fails to offer us any explanatory purchase. On the other hand, if it’s defined too narrowly, then it becomes hard to account for the compelling nature of ethics, its pervasive and subliminal influence, and the wide range of ethnographic situations that the ethical turn might illuminate. The second problem concerns the difference between “ethics” and “morality.” When I was writing my own book in the subject, I looked over the field to see how these terms had been used. It became clear that virtually every anthropologist who has written on the subject assumes there is a distinction between the two, but almost no one actually defines them, and when they do, there is no consensus: in fact, I found that when authors wanted to place the two terms in opposition to one another, one would define as “ethics” precisely what another would dub “morality,” and vice versa. In response to this confusion, several of us have found useful the distinction laid out by the philosopher Bernard Williams. Williams was critical of the abstractness, rationalism, and ahistorical nature of mainstream moral philosophy since Kant. What he criticized under the name “the morality system” had a juridical quality to it, often involving explicit prohibitions, obligations, and sanctions, applied regardless of person or context. Typically discussions of the morality system took the central problem to be decisions about right and wrong, understood as constraining one’s actions, viewed sub specie aeternitatis. As an alternative, Williams looked to virtue ethics. Viewed in this light, ethics invites us to see people as oriented toward historically specific visions of human flourishing—of what a life should and could be, something that is less constraining than enabling, not abstract but embodied and concrete. It emphasizes growth, practical disciplines, and active self-cultivation, the role of guides and exemplars, and variability over space and time: there is more than one way to flourish. If morality systems often propose general principles available to any rational individual, ethics is embedded in the specificity of social life within communities, where people have claims on one another and support, or undermine, one another’s efforts. Now, as I argue in Ethical Life, this view of ethics shouldn’t eliminate our interest in morality systems. Rather, it should put them in context: for participants in many religious and political reform movements, adherence to a morality system is what human flourishing consists of. But viewed comparatively, such systems (which include professional ethics, a topic that has loomed large in anthropology more widely) are special categories within the more encompassing sphere of ethics, historical phenomena whose existence shouldn’t be taken for granted.
So what’s new about the current ethical turn? For many of the authors I list below, at least three things are at issue (although in any given case, these authors may disagree vehemently with one another). First is the relative absence of any totalizing model of “culture” from the discussion; where it exists, it must at least be defended. If the Durkheimians risked identifying ethics with society, and the Boasians with culture, most contemporary ethnographers of ethics are wary of doing either. Moreover, many of them also tend to assume that any given ethical world is not going to be self-consistent and coherent—when we do encounter something like a morality system empirically, for instance in a religious piety movement or revolutionary cell, it calls out for explanation. Second is the emphasis that at least some anthropologists have placed on freedom. This is a controversial move within the field, but it follows from the previous point: if your values or your sense of right and wrong turn out to be determined by cultural norms, cognitive proclivities, or fear of punishment, then (in this view) they don’t really amount to “ethics.” As some philosophers might say, either you haven’t had a choice in the matter, or if you chose but only under compulsion, in either case you aren’t adhering to them for ethical reasons (no doubt there are ethnographic challenges to this position but this is where the current discussions have tended to work). A third follows from this, that ethics entails notions of responsibility that are predicated on local concepts of action, agency, and their ontological preconditions. To understand these, however, is not simply to reconstruct some pre-existing normative system or script that people are playing out, nor does it require we unearth a fixed ontological model. Rather it takes us into the nature of social interaction and the kinds of reflexivity that involves. The ethical turn invites the ethnographer to tease out the ways in which people, finding themselves accountable to one another, come—in ways that are ongoing and likely to be inconsistent—to understand what they are up to, and why.
Das, Veena. 2010. Moral and spiritual striving in the everyday: To be a Muslim in contemporary India. In Ethical life in South Asia, edited by Anand Pandian and Daud Ali. Bloomington: Indiana University Press.
Dave, Naisargi N. 2012. Queer activism in India: A story in the anthropology of ethics. Durham: Duke University Press.
Fassin, Didier, editor. 2012. A companion to moral anthropology. Malden: Wiley-Blackwell.
Fassin, Didier. 2012. Humanitarian reason: A moral history of the present. Berkeley: California.
Faubion, James. 2001. Toward an anthropology of ethics: Foucault and the pedagogies of autopoiesis. Representations 74: 83-104.
Foucault, Michel. 1985. The use of pleasure: The history of sexuality, volume 2. Translated by Robert Hurley. New York: Pantheon.
__________. 1997. Ethics, subjectivity, and truth: Essential works of Michel Foucault 1954-1980. Volume 1. Edited by Paul Rabinow. New York: New Press.
Hirschkind, Charles. 2006. The ethical soundscape: Cassette sermons and Islamic counterpublics. New York: Columbia University Press.
Humphrey, Caroline. 1997. Exemplars and rules: Aspects of the discourse of moralities in Mongolia. In The ethnography of moralities, edited by Signe Howell. London: Routledge
Keane, Webb. 2008. Market, materiality, and moral metalanguage. Anthropological Theory, 8 (1): 27-42.
__________. Rotting bodies: The clash of stances toward materiality and its ethical affordances. Current Anthropology, 55: S312-S321.
__________. 2016. Ethical life: Its natural and social histories. Princeton: Princeton University Press.
__________. 2016. Book Symposium. Ethical life: Its natural and social histories (Webb Keane). Hau: Journal of ethnographic theory 6 (1): 433-492.
Laidlaw, James. 2010. For an anthropology of ethics and freedom. Journal of the Royal Anthropological Institute. 8: 311-332.
__________. 2014. The subject of virtue: An anthropology of ethics and freedom. Cambridge: Cambridge University Press.
__________. 2014. Book symposium. The subject of virtue: An anthropology of ethics and freedom (James Laidlaw). Hau: Journal of ethnographic theory 4 (1): 429-506.
Lambek, Michael, editor. 2010. Ordinary ethics: Anthropology, language, and action. New York: Fordham University Press.
Lambek, Michael, Veena Das, Didier Fassin, and Webb Keane. 2015. Four lectures on ethics: Anthropological perspectives. HAU Books/University of Chicago Press
Lambek, Michael. 2015. The ethical condition: Essays on action, person, and value. Chicago: University of Chicago Press.
Lempert, Michael. 2013. No ordinary ethics. Anthropological Theory 13(4): 370-393.
Mahmood, Saba. 2005. Politics of piety: The Islamic revival and the feminist subject. Princeton: Princeton University Press.
Mattingly, Cheryl. 2012. Two virtue ethics and the anthropology of morality. Anthropological Theory 12(2): 161-184.
__________. 2016. Moral laboratories: Family peril and the struggle for a good life. Berkeley: University of California Press.
Pandian, Anand. 2009. Crooked stalks: Cultivating virtue in South India. Durham: Duke University Press.
Rogers, Douglas. 2009. The old faith and the Russian land: A historical ethnography of ethics in the Urals. Ithaca: Cornell University Press.
Robbins, Joel. 2004. Becoming sinners: Christianity and moral torment in a Papua New Guinea society. California.
__________. 2007. Between reproduction and freedom: Morality, value, and radical cultural change. Ethnos 72(3): 293-314
Williams, Bernard. 1985. Ethics and the limits of philosophy. Harvard.
Zigon, Jarrett. 2007. Moral breakdown and the ethical demand: A theoretical framework for an anthropology of moralities. Anthropological Theory 7(2): 131-150.
Webb Keane is the George Herbert Mead Collegiate Professor of Anthropology at the University of Michigan. He is the author of Ethical Life: Its Natural and Social Histories (Princeton 2016), Christian Moderns: Freedom and Fetish on the Mission Frontier (2007), and Signs of Recognition: Powers and Hazards of Representation in an Indonesian Society (1997), and co-editor of the Handbook of Material Culture (Sage 2006).
Book Forum––Harris Solomon’s Metabolic Living: Food, Fat and The Absorption of Illness in India by Todd Meyers
Harris Solomon’s Metabolic Living traces patterns of consumption, calories, and chronic disease to tell a story about the enfolding––the absorption and regulation––of food in and about the body in Mumbai. Solomon’s book is a powerful ethnographic reflection on how factors held as exterior (local and global cuisine, evolving and competing norms regarding eating and body image) are wholly interiorized. We are happy to present a lively set of commentaries.
Meta-Metabolism, or Governing from the Inside Out
Mumbi Metabolism Mysteries
University of Edinburgh
More Mango Madness
Metabolic Living with Madhur Jaffrey
University of Oregon
No Recipes: A Reply
Metabolic Living Book Forum on Scribd
Sonya E. Pritzker’s Living Translation: Language and the Search for Resonance in U.S. Chinese Medicine by Miao Jenny Hua
Berghahn Books, 2014, 228 pages
Chinese medicine names at least five components to the spiritual part of the embodied self, corresponding to each of the five organ-systems. The shen-spirit is associated with the heart, the yi-spirit with the spleen, po with the lungs, zhi with the kidneys and hun with the liver. These are not just technical jargon; each “spirit” has distinct connotations in everyday life. But how does one capture such subtle variations with actionable precision in the context of clinical Chinese medicine in the United States?
This is the kind of daunting question that Sonya Pritzker’s Living Translation addresses with exquisite ethnographic detail. Denying from the start that she is providing a how-to guide on translating Chinese medicine, Pritzker instead portrays the variable ways in which translations are enacted (2). With an eye to the world-making effects of practice inspired by Annemarie Mol (2002), “enact” is a capacious enough verb for Pritzker to capture translation as multiple modes of making lived equivalences. An ongoing process from monographs to conferences, classrooms to clinics, theoretical arguments over translation are never fully settled and clinical remedies in translation are rarely neatly reductive.
In the early twentieth-century, “Chinese medicine” was constituted as a defensive response to the discrediting advances of modern science and biomedicine in China (25). In the 1960s and 1970s, Chinese medicine was swept up as part of the New Age Movement in the United States, eventually achieving widespread institutional recognition as a form of Complementary and Alternative Medicine (CAM). Rather than having to constantly demonstrate its compatibility with scientific medicine in the modern Chinese context, U.S. Chinese medicine has engaged in a broader countercultural critique against the professional power and dehumanizing technologies of biomedicine. Translating specific Chinese medical terms is situated within a moral landscape of medical pluralism that take on different articulations on two sides of the pacific, where science is pitted against spirituality and authenticity in different terms. Chapter One of the book provides a cogent overview of the moral struggles and conundrums that translators and practitioners of Chinese medicine face in the United States.
Pritzker then devotes the next two chapters to review the textbooks and monographs that have most crucially influenced Chinese medical education in the United States, interspersed with interviews with translators. Chapter Two surveys different ideologies of language and translation surely familiar to translators and linguistic anthropologists while making for a good introduction for non-initiates. A dip into the literatures on Chinese medical translations readily shows how vociferously translational decisions are contested. One translator Pritzker cites, based in China, panned the erudite work of an Anglophone translator as perpetuating “Oriental folklore” in the guise of fidelity to tradition (Xie et al. 2005). Such controversies pivot around the social imaginaries through which Chinese medicine has been constituted and daily practiced, drawing on different moral landscapes of science and spirituality.
The second half of the book are based on 24 months of fieldwork at a school of Chinese Medicine in Southern California, where, having undergone similar training, Pritzker considers herself often in the position of a native ethnographer (5). She recorded interviews and classroom conversations, which were painstakingly transcribed using Jefferson system of notation in an effort to preserve real-time pauses, dialogic interjections, laughs and intonations. Drawing on linguistic anthropological theories, the ethnographer analyzed the transcripts for instances of competing ideologies of language and translation. The result is that there is an evidential rigor to the way in which Pritzker portrays translational practices in ethnographic text. Following a relatively consistent cohort of students throughout her fieldwork and asking them to revisit some of the conversations they’ve had about translation along the way, Pritzker’s fieldwork is exemplary for its consistency and detail.
One conversation Pritzker recorded with a student named “Julia” makes repeated appearances throughout the book. Earlier in her career, Julia expressed exasperation after a lecture about “qi,” complaining that trying to translate key concepts seems to inexorably descend into rabbit holes only to ultimately concede, “qi is qi” (128). What’s the point in delving further or providing more precise glosses? For Pritzker, this sort of statement is iconic of a whole network of ideologies about the arbitrariness of language as opposed to the universality of medical knowledge. Words are abstractions of ideas at best, a distraction from the truth at worst (58-59). Who cares what you call it: “qi is qi.”
Ambivalence about translation, denial being one extreme, is pervasive not only at the school for Chinese medicine, but also among those who translate Chinese medical ideas as a literary vocation. Returning to engage with textual translations in Chapter Three, Pritzker juxtaposes several keystone English-language monographs on Chinese medicine to discuss how qi has been translated as “life force”, “vigor of motion,” “energy,” “the very basis of the universe’s infinite manifestations of life,” or “a pictogram of steam rising from rice as it cooks” (123). Most author-translators leave qi untranslated, instantiating an ideology of linguistic incommensurability. Even still, they differ as to how to render qi in print – capitalized or not, italicized or not.
These chapters draw upon a rich literary and philosophical tradition to expound on how “living translation” takes place at the intersection of hermeneutics and embodiment – as an intertextual and interactional event – whereby linguistic alignments figuratively and pragmatically weave together a complex itinerary within the horizons of social life (147). That is to say, definitions are not ever simply equated as terms with abstract references in practice, although dictionaries often perform such ideologies of linguistic unity and commensurability. In Pritzker’s view, inscriptions in books are but one stop in a larger conversation that does not get transcribed. Dictionaries are the distillations of extended phone or epistolary conversations, lifelong disagreements, and standardization movements toward achieving greater political recognition for Chinese medicine. Even so, books can disclose these larger conversations of which they serve as accessible tips.
So in what larger conversations is Living Translation embedded? Pritzker’s extended ethnographic consideration lends to a distinct theory of translation – with layovers along the way in continental phenomenology and hermeneutics. This brings us to the book’s central theme: embodying evidence, equivalence, and especially resonance as highly valued moral goods of translation. “Resonance” is also a translated term; Pritkzer defines it early on as ganyin, or “the connection between practitioner and patient” (8). There are other translations of ganyin and circumlocutions of “resonance,” but the gloss Pritzker provides,“embodied equivalence,” is I think felicitous for accentuating the performative dimensions of its concrete constitution. This turn to “resonance” as the valuable outcome of translation marks a significant departure from literatures in science studies, which tend to emphasize consensus as translation’s primary end.
Resonance is highly sought after precisely because it promises to bring about mutual understanding. Far from conclusive, living translation intensifies “a search for the self, a search for wholeness, spirituality, for authentic, effective practice, and for a language that addresses the real needs of patients” (7). Pritzker specifically thematizes the search for resonance as a mode of clinical action in Chapter Six, describing a clinical encounter students partake in alongside one of their most compelling instructors. A sequence of translational deciphering and extended discussion between teacher and students produce a complex clinical picture of a patient seen in the clinic for “anxiety” (181-4). The group deemed that the patient could be afflicted with PTSD as her pulse manifested a dispersion of po-spirit and shock to lung-qi, all of which is consistent with an autonomic reflex gone awry. Rendering diagnostic decisions in translation weaves together initially discordant medical theories through local negotiations and revisions. Tentative equivalences are made with the force of embodied commitment. Anything but arbitrary, embodied resonance is the stuff that composes therapeutics.
Appropriately, Pritzker concludes the book on an appeal to further the search for a more resonant language: “it is my hope that the ethnographic story of living translation presented here can further contribute something toward healing the divide between ‘scholarship’ and ‘practice’ at the level of language in the translation of Chinese medicine in the United States” (191). In the end, the “search” that precedes “resonance” remains most resonant.
Mol, A. (2002). The Body Multiple: Ontology in Medical Practice. Durham, NC: Duke University Press.
Zhu-Fan, X., & White, P. (2006). “Comments on Nigel Wiseman’s A Practical Dictionary of Chinese Medicine (II)—On the use of Western medical terms to express the concepts of traditional Chinese medicine.” Chinese Journal of Integrative Medicine, 12(1), 61-65.
Miao Jenny Hua is a doctoral student of anthropology at the University of Chicago. She is three years into completing a doctorate in allopathic medicine. Her project explores the connections between traditional Chinese medicine and biomedicine in Chinese clinical contexts.
The Graphic Anthropology Field School (GrAFs) is a project launched by Expeditions, an independent network of scholars in the human sciences. For 11 years, we have been holding in Gozo (Malta) a summer school for anthropologists and social scientists, focused on the practice of fieldwork. Far away from sleepy lectures in gloomy classrooms, our aim has always been to keep our feet on the ground and experiment with tools and tricks for fieldwork practice.
The idea of offering a separated program entirely dedicated to graphic anthropology grew during the past two years. The project started quite randomly as a colleague saw me sketching a scenery. His interest was piqued and he suggested that we take some students to grab a coffee and sketch at a terrace as a group. Of course, the ulterior motive was to figure out if drawing could serve as observation and analysis in the field. But we quickly acknowledged it was more than that: drawings present numerous advantages at different stages of the research process. More importantly, sketching appeared as a handy activity for young and sometimes inexperienced researchers to access the field more easily. Also, it did not require any expensive gear nor specific skill: everyone can trace lines on paper.
GrAFs views drawing as a practice of “making” more than “taking” (Taussig 2011). Drawings are far less intrusive than photography, and encourage the necessity to take time, observe, wait, and get lost with fieldwork. In the field, the utility of sketches appears from a low-brow but most useful kind: sketching a scene gives one “a reason to be there” in situations where even senior researchers might struggle with a feeling of being “out of place.” It also helps to fight boredom in the field, serves as an opportunity to take the notebook out of the pocket and often provokes new and unexpected interactions. Something intriguing about sketches, especially when compared to standard field notes, is indeed their capacity to amuse people and arouse curiosity: sketches truly have the ability to get conversations flowing. As an observation tool, graphics may also help to explore different and perhaps more relaxed mindsets, push to look at things from multiple angles and help the researcher to realize — more than textual notes do — how subjective and biased his perceptions are.
As one among many other projects (http://www.anthropologyfieldschool.org/), our experiment with graphics quickly turned into a full-grown graphic anthropology workshop, and some of the participants used sketching in ways that did not originally occur to us. For example, in studying migration, one student turned drawing into a tool for icebreaking and reciprocal observation by having she and her informants sketch each other. Thus, this activity balanced the ethnographic relation in a more equal way. Another student found reflexive sketches useful for getting rid of fieldwork’s anxieties and traumatic experiences. Finally, a staff member let the process of drawing carry her through music played in a Gozitan village festa, experiencing sketching as a way to record sounds and senses.
Boosted by these early achievements, developing GrAFs was a way to give us more time to explore the potential and limits of graphic anthropology, something our academic lives do not always leave room for. The program, which took place in March and April 2016, was set up as a mixture of collective field trips, individual research and technical exercises (such as live model, portraying or perspective sessions). It was tailored to give us a grasp on the uses of graphics for both fieldwork and results communication, as well as to confront us with artistic drawing techniques from an anthropological point of view. Among other themes, we explored the practicalities and ethics of drawing and, for example, its potential to record social memories, gestures and techniques. In order to train in keeping visual field notes and organizing graphic narratives, some specific assignments included the production of ethnographic postcards, a daily comic report and a collective storyboarding session of a paper on Gozitan food culture. But, most importantly, participants were asked to draw all the time and never erase their lines. After a few days, drawing really became addictive for most of us.
Unfortunately, getting into each of these rich experiments would outstrip the scope of this post. In the next paragraphs, I will rather try to sketch out two general observations which, I hope, will be of some interest for other graphic anthropologists. Of course, it is clear that I do not speak here for all participants who gathered in Gozo, but rather from my personal point of view (you can find another report of the school here).
The first observation I want to bring in this discussion is about the possibility of using drawings as a form of performance in the field. What I am personally more enthusiastic about here is the transformative effect ethnographic drawings can have on the notebook itself and, accordingly, on the people who come to handle it. While writing always feels so secretive, drawings are “an invitation to watch and ask questions” (Hendrickson 2010: 34) as well as to make comments and edits. Because of their accessible nature, drawings have the potential to demystify the notebook by making its content public and consequently open to discussion and negotiation. Passing from hand to hand, the notebook becomes a mobile and participative museum which allows space for dialogue, collaboration and the expression of multiple levels of reflexivity. In the field, “one is constantly testing one’s interpretations and understanding by finding ways to play them back to informants” (Calzadilla and Marcus : 98); and this is exactly one of the reasons why drawings are useful. Of course, to reach this asks for some willingness, try-outs and also mistakes from the part of the ethnographer. And mistakes do happen. For example, one of the preoccupations that arose during the program concerned the iconicity of our drawings: what if we make a drawing of someone which looks negatively different from the way this person perceives herself? Drawings are not innocent. Sometimes, they can even be deadly serious.
Nevertheless, was it conscious or not, some of us developed clear techniques to foster people’s curiosity and comments. Echoing Ballard’s (2013: 139) depiction of portraiture as a “powerful plastic form of social interaction”, one participant made a point in using sketches of storefronts to trigger dialogue with bartenders and shop owners. As for myself, drawing with two hands or with watercolors proved being a solid trick to get other people’s interest. In the same vein, I cannot help but notice that I have progressively abandoned inconspicuous notebooks over the past two years. If one’s goal is to attract attention, draw bigger.
In this sense, drawing in ethnographic notebooks may best be described as an act of performance. A “theater anthropology” (Calzadilla and Marcus : 99), where the notebook itself becomes the stage on which the ethnographer and the interlocutors meet, discuss and debate both the script and the decor. In this mise-en-scène, the distinction between ethnographic drawings, participative drawings and what I would call “exposition drawings” (i.e. drawings that are intentionally made to communicate research results, like ethnographic expositions or anthropological comics) often tend to get blurry. The distinction, thereof, might not be heuristically fruitful.
The second observation concerns drawing style. As days passed, intimacy and trust grew among participants of the program and I felt the need to move away from a realistic style to more sketchy, conceptual and overtly subjective drawings. Drawings which, thanks to obvious distortions of apparent reality allowed me to stick closer to the lived experience of the moment. “In pointing away from the real, they [these drawings] capture something invisible and auratic that makes the thing depicted worth depicting” (Taussig 2011: 14-15).
Somehow, this process recapitulates the evolution of visuals in the history of anthropology itself. As David Macdougall (2004) points out, anthropologists slowly neglected realistic drawing, photography and film as they moved away from an ethnology mainly based on visually apparent aspects of human societies (dimensions of the body, skin color, masks and haircuts, material culture, architecture, formal rituals, etc.); to later rediscover film, but also a more figurative and conceptual form of drawing as an alternative to the limits of text in research topics such as, among others, memory, emotions, senses, sexuality, time or space.
Moving away from a superficial observation through drawing was, for me, a slow process. This difficulty might reflect a limit posed by a mode of inscription which does not automatically step away from the visual paradigm predominant in Western societies and academia (Ong quoted by Clifford 1986: 11). Some refer to ‘seeing through drawing’ as a haptic practice (see Ingold 2013: 139, Taussig 2011), and in many ways they are right to do so. But we do need to stay aware of this pitfall of visual thinking, especially for untrained artist-anthropologists : the eye first leads to what is visible. Thereof, the lack of training anthropologists show in both the history, the making and the interpretation of visuals is a risk at stake here. It did take Kandinsky his whole life to find his way into — and out of — figurative painting, did it not?
In our experience, learning to draw continuously — while talking, eating, walking or even standing in the middle of a busy bakery — helped growing confidence in our practice, develop a deeper intimacy with it and, in return, with the field. If field researchers want to avoid rigidifying cultures behind technical or organic drawings, artists-anthropologists really need to grasp lines of movements and actions, lines of life (Ingold 2011: 1-21). To do so, they need to be part of the flow, to move in it and, why not, to sketch with it. At least, this is what we will intend to do in the 2017 edition of our graphic anthropology program!
Kim Tondeur is a researcher and trainer at Expeditions. Research in Applied Anthropology. In Gozo (Malta), Kim carries ethnographic research in a small rural community, focusing on perceptions of change, Europe and globalization. His main research interests lie in the anthropology of neoliberalism, ecological systems and social inequalities. One of Kim‘s specialities is graphic anthropology. Through his fieldwork and workshops, he explores and studies the possibilities offered by sketches and drawings as a tool for ethnographic research and social sciences.